Feminism & Bioethics: Beyond Reproduction

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Feminism & Bioethics

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FEMINISM & BIOETHICS Beyond Reproduction

EDITED BY

Susan M. Wolf

New York Oxford OXFORD UNIVERSITY PRESS 1996

Oxford University Press Oxford New York Athens Auckland Bangkok Bombay Calcutta Cape Town Dar es Salaam Delhi Florence Hong Kong Istanbul Karachi Kuala Lumpur Madras Madrid Melbourne Mexico City Nairobi Paris Singapore Taipei Tokyo Toronto and associated companies in Berlin Ibadan

Copyright © 1996 by The Hastings Center Published by Oxford University Press, Inc., 198 Madison Avenue, New York, New York 10016 Oxford is a registered trademark of Oxford University Press All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Oxford University Press. Library of Congress Cataloging-in-Publication Data Feminism & bioethics : beyond reproduction / edited by Susan M. Wolf. p. cm. Includes bibliographical references and index. ISBN 0-19-508568-X; ISBN 0-19-509556-1 (pbk.) 1. Medical ethics. 2. Feminist ethics. 3. Feminism. I. Wolf, Susan M. [DNLM: 1. Bioethics. 2. Women's Rights. QH 332 F329 1995] R724.F395 1995 174'.2—DC20 DNLM/DLC 94-28186

135798642 Printed in the United States of America on acid-free paper

To the memory of my great-grandmother Miriam— poet, suffragist


Acknowledgments

This book was born of my interest in exploring what feminist work could bring to bioethics. It took shape through collaboration with the contributing authors whose work appears within and a host of others in bioethics, law, philosophy, and feminist theory. It was sustained by supportive colleagues at the three institutions that served as home during the book's preparation: The Hastings Center, Harvard, and the University of Minnesota. The book grew out of a desire to bring feminist perspectives to bear on problems in bioethics beyond human reproduction. The burgeoning literature on feminist ethics, jurisprudence, and psychology seemed to have much to say about the full range of issues in bioethics, from euthanasia to problems posed by the HIV epidemic, to research ethics, to resource allocation, and beyond. Yet there was virtually nothing investigating the relationship of feminist work to this broader range of problems. In 1990 I set to work, together with colleagues at The Hastings Center, to explore that terrain and help fill the gap. We convened a project group to meet for discussion and to generate papers. The group met twice, in November 1990 and again in November 1991, with much dialogue and exchange of manuscripts in between. Some of the chapters in this book were presented at our initial meeting; some took shape at the meeting that followed. A few grew out of exchanges afterward. All were reworked as our thinking evolved and new developments occurred.

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Acknowledgments

The project would not have flourished without the blessing and support of Daniel Callahan, Director of The Hastings Center. Indeed, Dan agreed to make this the first Hastings Center project I know to reimburse child care expenses that participants incurred in order to attend our meetings. He and Dr. Willard Gaylin, President of the Center, have managed to found a unique institution, in which free inquiry into the ethics of health care and the life sciences has continued for over twenty-five years. In my eight years there, first as a National Endowment for the Humanities Fellow and then as Associate for Law, I found full freedom to investigate new ideas. This book bears witness. As on every issue, colleagues held differing views on what feminist perspectives could offer to bioethics. It is a glory of The Hastings Center that we were always free to disagree, and that the collegiality continued. Certain people at the Center were closely involved in this project from the start: James Lindemann Nelson, Hilde Lindemann Nelson, and Bette-Jane Crigger. Important additional participants at the Center included Bruce Jennings, Joseph Fins, Philip Boyle, Strachan Donnelley, and Julie Rothstein. Marna Howarth supplied critical research support. DeLona Norton provided administrative assistance. We were joined at project meetings by collaborators from other institutions who gave generously of their insights, talents, and energy. Many of these project members went on to write chapters for this book. Their hard work and commitment to this project are obvious in the pages that follow. Others who participated in our meetings and made substantial contributions include John Arras, Allison August, Sidney Callahan, James Childress, Ellen Wright Clayton, Irene Crowe, Margaret Farley, Elizabeth Gee, and Sara Swenson. Irene Crowe played a pivotal role. As a scholar, President of The Pettus-Crowe Foundation, and member of the Hastings Center Board of Directors, she nurtured this project from its inception. She attended the project meetings and conferred with us afterward. A grant from the foundation provided critical financial support. Most important, Irene has been a friend and advisor. Elizabeth Gee was another scholar and Hastings Center board member whose involvement was important to this project. Her death during the course of our work was a great loss. It is a comfort that she surely would have been gratified to see the project come to fruition. In addition to The Pettus-Crowe Foundation, two other sources provided essential financial support to this project at The Hastings Center. The Greenwall Foundation courageously provided funds for the risky and difficult task of breaking new ground. Greenwall has been in the forefront of foundations interested in bioethics and has supported my own work with great generosity. The foundation's faith in this project and the special interest of the foundation's President, William Stubing,

Acknowledgments

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has been a cornerstone of this effort. The Donnelley Trust, through funds donated to The Hastings Center to support intellectual investigation that otherwise might have difficulty finding adequate resources, also contributed critically to this project. This book aims to fulfill the trust's visionary mission. Midway through preparation of this book I moved to Harvard, having the good fortune to be awarded a 1992-93 Fellowship in the Program in Ethics and the Professions. As all who have held that fellowship know, and as their many publications attest, there are few environments as supportive of scholarly work. Professor Dennis Thompson, Director of the Program, responded to all of the work I inflicted upon him with the ideal mixture of encouragement and critique. Jean McVeigh, Helen Hawkins, and Ted Aaberg did everything possible to facilitate my labors. The other program fellows were a source of ready collegiality and intellectual aid. Larry Blum, Norman Daniels, Jorge Garcia, and Elizabeth Kiss were especially helpful. Rebecca Dresser served as both a contributor to this volume and a close colleague during the fellowship year; it was into her office that I bounded in celebration and crawled in frustration. Certain faculty members in the broader university also played a vital role, offering encouragement and suggestions. Martha Minow welcomed me into a Femcrits group in Cambridge as this book was just starting to take shape, urged me to consider the fellowship, and offered her insights at many junctures. Linda Emanuel was also instrumental in my coming to Harvard, opened the world of her research and the Medical School's Division of Medical Ethics, pondered the complexities of gender, and became a trusted co-author and friend. In 1993 my labors found a new home at the University of Minnesota. As Associate Professor of Law and Medicine in the Law School and a Faculty Associate in the Center for Biomedical Ethics, I found wellsprings of support on both sides of the Mississippi River. Dean Robert Stein in the Law School and Professor Arthur Caplan, Director of the Center, were unflagging in their enthusiasm. As a fellow laborer in the fields of bioethics, Arthur gave the special gift of complete confidence in the importance of this effort. Steven Miles and other colleagues at the Center also lent significant support. Professor Shirley Garner, Director of the University's Center for Advanced Feminist Studies, kindly asked me to present the project for discussion and helped build important intellectual connections for me in my new home. Law students Kent Spies and Terrence J. Dwyer provided able research assistance. Many people outside of the three institutions that have been my homes have aided this book along the way, reading drafts, talking through the issues, leading to the next source, and providing moral support. Each chapter acknowledges those who assisted in its prepara-

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tion. Others who helped with the book as a whole, some in large ways and some in small, include Lori Andrews, Tom Beauchamp, Allan Brandt, Claudia Card, Alta Charo, Larry Churchill, Annette Dula, Barry Hoffmaster, Helen Bequaert Holmes, Ruth Hubbard, Eric Juengst, Patricia King, Abby Lippman, Ruth Macklin, Kathleen Nolan, Patricia Peppin, Karen Rothenberg, and Zipporah Wiseman. Jay Katz demonstrated once again that he is the most gifted of mentors, as a generation of scholars in law and medicine knows. Alison Wetherfield offered a community of spirit even from half a globe away. Judy Shaw provided camaraderie and perspective as we wandered over Martha's Vineyard and points west. My father, William B. Wolf, Jr., remained true counselor and ally. I am most indebted, of course, to the fifteen scholars who contributed to this volume. They met my queries and concerns, more black ink than I think any expected, and the tyranny of the flow chart on my wall with creativity and determination. I kept waiting for armed revolt. It never came. Friendship flowered instead. The fifteen-minute phone call on footnotes became an hour on feminist theory, how the writing process was going, jobs, children, life. We have discussed chapters while playing with a daughter by the Charles River, on an expedition to a play on genetics at the Kennedy Center, at a meeting on women's health in Texas, by the conference center pool in Taos, at lunches, at dinners, and always on the phone. These are voices that will never again have to tell me who's calling. I am grateful for the chance to engage with them deeply on what we wrote, and fully on how we lived. At critical junctures in my work, presentations that I was invited to make at the Association of American Law Schools' Health Law Workshop, the American Public Health Association's annual meeting, the University of Texas Law School, and the Kennedy Institute of Ethics at Georgetown University, as well as The Hastings Center, Harvard, and the University of Minnesota, were immensely helpful. Participants in the workshop that Rosemarie Tong and I led on feminism and bioethics at the 1993 Bioethics Summer Retreat provided important impetus. Such opportunities for exchange and debate are only growing, as more and more people recognize the significance of work on feminism and bioethics. Now, as always, I am indebted as much to those who offer me challenge, as to those who agree.

Contents

CONTRIBUTORS,

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Introduction: Gender and Feminism in Bioethics, 3 Susan M. Wolf

I: The Relationship of Feminism and Bioethics 1. Feminism and Bioethics, 47 Susan Sherwin 2. Feminist Approaches to Bioethics, 67 Rosemarie Tong 3. On Treatment of Myopia: Feminist Standpoint Theory and Bioethics, 95 Mary B. Mahowald 4. Reconstructing the Patient: Starting with Women of Color, 116 Dorothy E. Roberts 5. What Bioethics Can Learn from the Women's Health Movement, 144 Rebecca Dresser

II: Feminist Perspectives on Specific Problems in Bioethics 6. A Feminist View of Health, 163 Laura M. Purdy 7. Communicative Ethics in Medicine: The Physician-Patient Relationship, 184 Janet Farrell Smith 8. Ethical Obstacles to the Participation of Women in Biomedical Research, 216 Vanessa Merton 9. Women as Vessels and Vectors: Lessons from the HIV Epidemic, 252 Ruth Faden, Nancy Kass, and Deven McGraw

xii 10. Gender, Feminism, and Death: Physician-Assisted Suicide and Euthanasia, 282 Susan M. Wolf 11. Feminism, Bioethics, and Genetics, 318 Adrienne Asch and Gail Geller 12. Justice in the Allocation of Health Care Resources: A Feminist Account, 351 Hilde Lindemann Nelson and James Lindemann Nelson INDEX, 371

Contents

Contributors

Adrienne Asch is the Henry R. Luce Professor in Biology, Ethics and the Politics of Human Reproduction at Wellesley College. She received her Ph.D. in social psychology from Columbia University. From 1987 to 1990 she served as Associate in Social Science and Policy with the New Jersey Bioethics Commission, and in 1993 was a member of the Bioethics Working Group of the federal Task Force on Health Care Reform. With Michelle Fine she coedited Women with Disabilities: Essays in Psychology, Culture, and Politics (Philadelphia, PA: Temple University Press, 1988), which won the Distinguished Publication Award of the Association for Women in Psychology in 1989. Her publications also include "Reproductive Technology and Disability," in Sherrill Cohen and Nadine Taub, eds., Reproductive Laws for the 1990s (Clifton, NJ: Humana Press, 1989), and "Surrogacy and the Family: Social and Value Considerations," in Dianne M. Bartels, Reinhard Priester, Dorothy E. Vawter, and Arthur L. Caplan, eds., Beyond Baby M: Ethical Issues in New Reproductive Techniques (Clifton, NJ: Humana Press, 1990). Rebecca Dresser is a Professor at Case Western University School of Law, with a joint appointment at the Center for Biomedical Ethics in the School of Medicine. She received her J.D. from Harvard Law School. She was the legal consultant for the American Academy of Pediatrics Committee on Bioethics from 1987 to 1994, and has participated in numerous other national projects. Among her previous publications are "Wanted: Single, White Male for Medical Research," Hastings Center Report 22 (Jan.-Feb. 1992): 24-29, and "Feeding the Hunger Artists: Legal Issues in Treating Anorexia Nervosa," Wisconsin Law Review 1984: 297-374. Ruth R. Faden is the Philip Franklin Wagley Professor of Biomedical Ethics and the Director of the Bioethics Institute at Johns Hopkins University. She is also a Senior Research Scholar at the Kennedy Institute of Ethics at Georgetown University, and Chair of the President's Advisory Committee on Human Radiation Experiments. She received her M.A. in the humanities from the University of Chicago, and her M.P.H. and Ph.D. in attitudes and behavior from the University of California, Berkeley. She is coeditor with Nancy Kass of the forthcoming book HIV, AIDS, and Childbearing: Public Policy, Private Lives (New

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Contributors

York, NY: Oxford University Press). Other publications include AIDS, Women, and the Next Generation: Towards a Morally Acceptable Public Policy for HIV Testing of Pregnant Women and Newborns (New York, NY: Oxford University Press, 1991), which she coedited with Gail Geller and Madison Powers, and A History and Theory of Informed Consent (New York, NY: Oxford University Press, 1986), co-authored with Tom L. Beauchamp, with the collaboration of Nancy M. P. King. Gail Geller is an Assistant Professor in the School of Medicine at Johns Hopkins University, with a joint appointment in the School of Public Health. Her primary affiliation is with the Genetics and Public Policy Studies research unit. She received her Sc.D. from the Program in Law, Ethics, and Health at the School of Public Health at Johns Hopkins University. She chaired the American Public Health Association Forum on Bioethics in 1989-90; served as consultant to the National Academy of Sciences, Institute of Medicine Committee on Prenatal and Newborn Screening for HIV Infection in 1990; and was a Chateaubriand Fellow in Paris in 1991. With Ruth Faden and Madison Powers she coedited AIDS, Women, and the Next Generation: Towards a Morally Acceptable Public Policy for HIV Testing of Pregnant Women and Newborns (New York, NY: Oxford University Press, 1991). Her other publications include "Incorporation of Genetics into Primary Care Practice: Will Physicians Do the Counseling and Will They Be Directive?" Archives of Family Medicine 2 (1993): 1119-25. Nancy E. Kass is an Assistant Professor in the Program in Law, Ethics, and Health in the School of Public Health at Johns Hopkins University. She received her Sc.D. in health policy from Johns Hopkins and completed a postdoctoral fellowship in bioethics at the Kennedy Institute of Ethics, Georgetown University. She served as consultant to the President's Advisory Committee on Human Radiation Experiments in 199495. With Ruth Faden she is coeditor of the forthcoming book HIV, AIDS, and Childbearing: Public Policy, Private Lives (New York, NY: Oxford University Press). Other publications include "Policy Options for Prenatal Screening Programs for HIV: The Preferences of Inner-City Pregnant Women," AIDS and Public Policy Journal 7 (1992): 224-33, and "Counseling in the Context of Prenatal HIV Testing," in Ruth R. Faden, Gail Geller, and Madison Powers, eds., AIDS, Women, and the Next Generation: Towards a Morally Acceptable Public Policy for HIV Testing of Pregnant Women and Newborns (New York, NY: Oxford University Press, 1991). Mary B. Mahowald is a Professor in the Department of Obstetrics and Gynecology and The College, and Assistant Director of the Center for

Contributors

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Clinical Medical Ethics at the University of Chicago. She received her Ph.D. in philosophy from Marquette University. She is the principal investigator on projects supported by the National Center for Human Genome Research to examine the impact of the Human Genome Project on Women, and its implications for primary caregivers. She also serves on the Breast Cancer Research Integration Panel for the Department of Defense. Her books include Philosophy of Woman: An Anthology of Classic and Current Concepts, 3d ed. (Indianapolis, IN: Hackett, 1994), and Women and Children in Health Care: An Unequal Majority (New York, NY: Oxford University Press, 1993). Deven C. McGraw received her J.D. from Georgetown University Law Center and her M.P.H. from the School of Public Health at Johns Hopkins University in 1995. She served as Executive Editor of the Georgetown Law Journal. She has published "Financial Incentives to Limit Services: Should Physicians be Required to Disclose these to Patients?"Georgetown Law Journal 83: 1821-47 (1995), and "Trades, AIDS, and the Public's Health: The Limits of Economic Analysis," Georgetown Law Journal 83: 79-107 (1994) (reviewing Tomas J. Philipson and Richard A. Posner, Private Choices and Public Health: The AIDS Epidemic in an Economic Perspective (1993)) with Ronald Bayer and Lawerence O. Gostin. Vanessa Merton is the Associate Dean for Clinical Education and a Professor at Pace University School of Law. She was the first Chairperson of the Institutional Review Board of the New York Community Research Initiative, the community-based research arm of the People with AIDS Coalition. She received her J.D. from New York University. Her previous articles include "The Exclusion of Pregnant, Pregnable, and Once-Pregnable People (a.k.a. Women) from Biomedical Reseach," American Journal of Law & Medicine 19 (1993): 369-451; "Communitybased AIDS Research," Evaluation Review 14 (1990): 502-37; and "Confidentiality and the 'Dangerous' Patient: Implications of Tarasoff for Psychiatrists and Lawyers," Emory Law Journal 31 (1982): 263-343. Hilde Lindemann Nelson is the Director of the Center for Applied and Professional Ethics at the University of Tennessee, Knoxville. From 1990 to 1995 she was a research associate at The Hastings Center and Associate Editor of the Hastings Center Report, having previously taught at Michigan State University and St. John's University in Minnesota. Among her publications are "Against Caring," Journal of Clinical Ethics 3 (Spring 1992): 8-15; "The Architect and the Bee," Bioethics 8 (July 1994): 247-67; "Resistance and Insubordination," Hypatia 10 (Spring 1995): 23-40; and, with James Lindemann Nelson, The Patient in the Family (New York, NY: Routledge, 1995).

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Contributors

James Lindemann Nelson is Professor of Philosophy at the University of Tennessee at Knoxville. Formerly Associate for Ethical Studies at The Hastings Center, he has also held faculty appointments at Vassar College, Michigan State University, and St. John's University in Minnesota, where he codirected a federally funded project to integrate feminist perspectives into the curriculum. His publications include "Making Peace in Gestational Conflicts," Theoretical Medicine 13 (1992): 319-28; and, with Hilde Lindemann Nelson, "Feminism, Social Policy, and Long-Acting Contraception," Hastings Center Report 25 (Jan.-Feb. 1995): S30-32; and The Patient in the Family (New York, NY: Routledge, 1995). Laura M. Purdy is a Professor of Philosophy at Wells College. She received her Ph.D. in philosophy from Stanford University. She is currently on the editorial boards of Hypatia and Bioethics. She was the Guest Editor of a special issue of Hypatia, "Ethics & Reproduction" (Fall 1989). A volume based on that issue and the prior one was subsequently published as Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992). Her book In Their Best Interest? The Case Against Equal Rights for Children was published in 1992 by Cornell University Press. Cornell will publish a collection of her essays, Reproducing Persons, in 1996. Dorothy E. Roberts is a Professor at Rutgers University Law School, Newark. She received her J.D. from Harvard Law School. She has served as a consultant to the Center for Women Policy Studies and the New Jersey Women and AIDS Network. Her previous publications include "The Genetic Tie," University of Chicago Law Review 62 (1995): 209-73, and "Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right of Privacy," Harvard Law Review 104 (1991): 1419-82. She is working on a book tentatively titled Race, Reproduction, and the Meaning of Liberty. Susan Sherwin is Professor of Philosophy and Women's Studies at Dalhousie University in Halifax, Canada. She received her Ph.D. in philosophy from Stanford University. She is the author of No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), and coeditor of Moral Problems in Medicine, 2d ed. (Englewood Cliffs, NJ: Prentice-Hall, 1983) with Samuel Gorovitz and others. Janet Farrell Smith is Associate Professor of Philosophy at the University of Massachusetts, Boston. She earned her M.A. and Ph.D. in philosophy from Columbia University. She has received a number of fel-

Contributors

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lowships and grants, including from the National Endowment for the Humanities, Harvard University, and the Mellon Foundation. Her previous publications include "A Critique of Adversarial Discourse: Gender as an Aspect of Cultural Diversity," in Lawrence Foster and Patricia Susan Herzog, eds., Defending Diversity: Philosophical Perspectives on Pluralism and Multiculturalism (Amherst, MA: University of Massachusetts Press, 1994); "Plato, Irony and Equality," reprinted in Nancy Tuana, ed., Re-Reading the Canon: Essays in Plato's Philosophy (Philadelphia, PA: University of Pennsylvania Press, 1993); and "Rights-Conflict, Pregnancy and Abortion," in Carol C. Gould, ed., Beyond Domination: New Perspectives on Women and Philosophy (Totowa, NJ: Rowman & Allanheld, 1983). Rosemarie Tong is Thatcher Professor in Philosophy and Medical Humanities at Davidson College. She received her Ph.D. in philosophy from Temple University. Her publications include Feminine and Feminist Ethics (Belmont, CA: Wadsworth, 1993); Feminist Thought: A Comprehensive Introduction (Boulder, CO: Westview Press, 1989); and Controlling Our Reproductive Destiny (Boston, MA: MIT Press, 1994), co-authored with Larry Kaplan. Susan M. Wolf is Associate Professor of Law and Medicine at the University of Minnesota Law School, and a Faculty Associate at the University's Center for Biomedical Ethics. She received her J.D. from Yale Law School. In 1992-93 she was a Fellow in the Program in Ethics and the Professions at Harvard University. Previously, she was a National Endowment for the Humanities Fellow and then Associate for Law at The Hastings Center, where she directed the project that produced Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, IN: Indiana University Press & The Hastings Center, 1987). Her previous publications include "Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism," American Journal of Law & Medicine 20 (1994): 395-415, and "Ethics Committees and Due Process: Nesting Rights in a Community of Caring," Maryland Law Review 50 (1991): 798-858.


Feminism & Bioethics


Introduction: Gender and Feminism in Bioethics Susan M. Wolf

I was too young—I had never heard of Lou Gehrig's disease until my grandmother Ruth returned from Minnesota with the diagnosis. Her hand already cramped and frozen, she explained that "the Mayo" predicted the rest of her would follow, in a neuromuscular degeneration called amyotrophic lateral sclerosis. I remember thinking that a trip so far from Washington, D.C., must mean they were right. And so they were. The family watched for four more years as our matriarch, source of comfort, of Thanksgiving dinners, of calming words, became paralyzed and gradually slid toward death. I had never been part of this before and something triggered. I wrote her letters saying how much particular acts of love had mattered. I asked her whether in my generation she would have chosen a career instead of devoting all to the family. (No, she would not.) Near the end, as she lay fully paralyzed on a ventilator, unable to communicate, I voiced the rage I saw in her eyes, an emotion I'd never seen her express. I guess that is when the shift started, toward wondering about gender and death, woman-ness and all sorts of choices about illness and the body. No one elicited my grandmother's preferences about whether to use a ventilator. Once she became speechless, family members speculated about what she would want, but seemed to project their own feelings about what a woman of such "fastidiousness" (I remember the word) would choose.

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Introduction: Gender and Feminism in Bioethics

My grandmother died in 1976. Just three weeks later the New Jersey Supreme Court brought these choices about life-sustaining treatment to national attention by issuing the Quinlan decision. Her disease would come to afflict many of the plaintiffs in subsequent court cases. At the time she died, I was just out of college. Nearly twenty years later I had found a career in bioethics. But I stood almost as helpless at my grandfather's deathbed. Emaciated from emphysema and multi-organ systems failure, he lay in a darkened room in Baltimore. Only this time the grandparent in the bed articulated his own preferences about treatment, his own rage and finally resignation. The connection and contrast were clear: his voice versus her silence; his efforts to control his care, while her care was guided by others' sense of her feminine "fastidiousness" and role. He was buried by her side. These stories are far from unique. All families (by which I mean not just traditional families, but people committed to sharing their lives) face death and more—choices about childbearing and often reproductive technologies, anxieties about genetic disorders (even in families without blood ties), efforts to cope with disability, and inevitably illnesses minor and devastating. At the same time, families are both shaping and learning each member's sense of what gender means. I suspect that the link I saw in my family between these two domains is commonplace. Both are arenas in which we face choices about the body, the deep structure of our lives, and what we value. Yet bioethics—a field devoted to analyzing choices about dying, reproduction, genetics, disability, and disease—has until recently ignored the link to gender and the illumination that feminist analyses might offer. This is a puzzle. Most of the quandaries that occupy modern bioethics, from reproductive technologies and genetic screening to the HIV epidemic and the allocation of health care resources, have distinct implications for women and for men.1 Studies indicate that when it comes to getting health care, women and men seem to be treated differently as well.2 Among health professionals and scientists, gender differences in treatment and research have thus become a significant concern. Even governmental efforts to combat gender bias have begun.3 Meanwhile, in the individual disciplines that contribute to form the interdisciplinary field of bioethics, feminist work is well under way. Feminist ethics and jurisprudence have both come of age; the literature in each is substantial.4 Feminist criticism and theory outside those domains have flourished as well. 5 Indeed, there has been considerable feminist work on science and medicine. 6 Against this background, it becomes truly perplexing why bioethics has paid so little attention to gender and feminist work. To be sure,


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in some areas such work was unavoidable, especially in the ethics of reproduction7 and nursing. 8 There have also been isolated feminist analyses of other topics.9 But until recently there have been few attempts to examine the full range of bioethical problems with systematic attention to gender and feminist work. 10 This book is an attempt to fill that gap, to explore what feminist perspectives can bring to bioethics. The five chapters in Part I investigate the relationship that can be forged between feminism and bioethics. As is now clear, no one theory or perspective constitutes feminism; there are a number of feminisms, which some feminist writers have classified. 11 Thus there is no one correct view on the relationship between feminism and bioethics. All five chapters argue for the necessity of feminist analysis in bioethics, but each in a different way. They urge the importance of liberal feminism, the advantages of feminist over feminine analysis, the use of feminist standpoint theory, analysis that starts with the experiences of women of color, and a bioethics that learns from the women's self-help health movement. The seven chapters in Part II then apply feminist perspectives to specific problems in bioethics: the definition of health, the patientphysician relationship, the exclusion of women from research, the HIV epidemic, physician-assisted suicide and euthanasia, genetics, and the allocation of scarce health care resources. These chapters add to the roster of feminist methodologies offered in Part I by presenting a feminist communicative ethics, an attempted reconciliation of the ethics of principle and of care, and feminist interpretations of the demands of justice, among others. These chapters demonstrate the advantages of paying attention to gender and feminism in bioethics. Yet before we make the case for this new turn in bioethics, we have to ask where bioethics has been. We must return to the puzzle: why has bioethics paid so little attention to gender and to feminist work? In this Introduction I want to argue that it is no accident that bioethics has largely ignored gender and feminism, long after the rest of the humanities and law have found such work to be important. Nor is the explanation to be found in the demography of modern bioethics, for women have played an important part in the field from the start. 12 Instead, the answer is to be found in the deep structure of bioethics— in its early embrace of a liberal individualism largely inattentive to social context; in its emphasis on deduction from ethical principles rather than induction from concrete cases; in its tendency to view ethical problems either dyadically as problems between individuals, or nationally as problems for the entire society, but rarely at an intermediate level attentive to the moral significance of groups; and in the failure of bioethics to be sufficiently self-critical by examining whom the field serves and how.

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This analysis of the deeper reasons why there has been a wall between bioethics and feminism has implications. First, it means that the neglect of gender and feminism in bioethics has not been a product of an intent to harm. In fact, bioethicists have fought to protect vulnerable patients and research subjects from harm and to establish their moral and legal rights. But the analysis also means that forging a relationship between bioethics and feminism requires a critique of bioethics itself. Thus this book's message is more than "me too," more than a call to expand bioethical concerns and methods to include women and feminism. This book offers a critique of bioethics and calls for its reconstruction. The reconstruction we attempt to inaugurate here should, in fact, reach beyond gender and feminist work. Until quite recently, bioethics has been even less attentive to questions of race and ethnicity. This is at least peculiar, given the fact that the Nuremberg trials of Nazi physicians for atrocities committed against Jews and others, and the Tuskegee Syphilis Study performed by the U.S. Public Health Service on African Americans are foundational events for bioethics and scandals in which race and ethnicity played a large part. The demographics of bioethics may be important here—although some scholars of color have been quite important to the development of bioethics, U.S. bioethicists have overwhelmingly been white. Yet here again, a deeper dynamic seems at work. Some of the same features of bioethics that account for a reluctance to focus on gender and feminist perspectives—a failure to recognize the moral significance of groups, to pay attention to the particularity of experience, and to analyze differences among individuals—also come into play here. Although bioethicists have attempted something progressive, the unseating of traditional physician paternalism, we may have been slow to recognize the limits of our progressiveness and our perspective. We have seen ourselves as agents of change arguing for patients' and subjects' rights, rather than recognizing that in some respects we represented the status quo and the dominant culture. Bioethics is now challenged by an emerging literature on African American perspectives. 13 Other ethnic and racial groups may join the fray as well. 14 Thus after years in which modern bioethics seemed static, with little room for genuine breakthroughs, we now see a period of deep challenge and growth. This book aims to be part of that, by trying to show what a bioethics truly attentive to gender and feminism might look like. But twelve chapters cannot exhaust the possibilities. We hope to help engender a new discourse, not finish it. The task of this Introduction is to begin at the beginning. It is to explore why bioethics has largely ignored gender and feminism, what


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steps are required to reconstruct bioethics, and how the individual chapters in this book can help.

Feminism and Bioethics: Definitions No work on feminism and bioethics can begin without defining both. Defining bioethics is the easier of the two tasks. It is the study and formulation of the ethics of health care and the biological sciences. I do not dwell on the distinction between ethics and morals; "bioethics" usually is used to encompass both. However, I prefer "bioethics" to "biomedical ethics." The dictionary defines "medical" as relating to physicians. But bioethics takes on ethical problems raised by health and health care, whether the relevant healer is a physician, nurse, or other person, and whether the individuals experiencing health problems are already patients in the health care system or not. Finally, ethical problems in the biological sciences include all problems relating to research on human subjects, as well as debates about more basic research in its future application to human beings. Some have begun to use the term "bioethics" even more broadly; we now see bioethical analysis of animal use and the environment.15 The focus of this book, however, is on human beings. That has been the heart of modern bioethics. That is where work on gender dynamics and feminist analysis of human problems will have its greatest implications. So far I have defined "bioethics" by specifying the objects of its concern. But it can also be described sociologically as the activity of a recognizable group of people. Modern bioethics is a collaboration of several disciplines, with their relative importance shifting over time. Philosophers, lawyers, physicians, and scientists have played major roles from the beginning. Theologians were significant players early, but more recently have worried about a loss of influence. 16 Meanwhile, nurses have come to play a larger role.17 Social scientists such as medical sociologists and anthropologists are increasingly important, both as critics and contributors. 18 A few economists, too, have joined in this interdisciplinary work. 19 There remain the ambiguities and disputes that plague most interdisciplinary fields. There are no hard rules about who may label herself or himself a "bioethicist." Like any academic field, however, participants are most recognizable by their contributions to a burgeoning bioethics literature. And in recent years bioethics has developed subdivisions. "Clinical ethics," for example, focuses on handling ethical problems in patient care. 20 Some participants in that (though by no means all) concentrate on clinical service rather than academic

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scholarship. This book speaks to bioethics both as an academic discipline and as an area of clinical practice and consultation. Defining "feminism" is considerably harder. Alison Jaggar traces the origins of the term from the French and from nineteenth century U.S. usage, concluding that it is "[n]ow . . . commonly used to refer to all who seek ... to end women's subordination." 21 Susan Sherwin, in a consistent but more epistemological vein, sees feminism as "the perception of the power relations that structure gender relations." 22 Yet many who seek to define "feminism" have noted the difficulty: there are different sorts of feminism, and conflicts between different orientations within the overall category.23 Attempting a short definition usually becomes a search for the broadest and most inclusive rubric. Thus it can be safely said that feminist work takes gender and sex as centrally important analytic categories, seeks to understand their operation in the world, and strives to change the distribution and use of power to stop the oppression of women. There are significant implications of this general description. First, not all work done by women is feminist. One can be female and yet ignore issues of gender and oppression; indeed, one can support the domination of women. Second, one need not be of the female gender to do feminist work. A number of men have published substantial contributions. A feminist bioethics is not a separate bioethics for women. It is a bioethics that sees oppression based on gender as a serious wrong and critically investigates the workings of power and gender. Moreover, a literature now challenges the notion that there are only two dichotomous genders, arguing that biologically, behaviorally, and culturally there is more fluidity. 24 People struggling with the very notion of gender may be well armed to do ground-breaking feminist work. Third, merely paying attention to the category of "women," as important as it is, does not make work feminist. One can attend to the category yet abstain from analyzing and challenging oppression. There is a difference between asking the "woman question"—Where are the women in this picture?—and going on to perform feminist analysis. Finally, feminist work is not synonymous with the ethics of care. The ethics of care has been developed starting with the work of Carol Gilligan.25 She challenged the notion that there was one superior way to think about moral problems, a way that emphasized abstract and general notions of justice and rights. She suggested that there was another way, which emphasized particularities, relationships, and continued connection. Gilligan did not claim that all men thought in the first way and all women in the second, but she did suggest that men and women tended in those directions. She also insisted that maturity was marked by the capacity to think in both ways and to inte-


9

grate the two. Scholars since have debated different ways that integration might be forged.26 They have also pressed forward empirically to test the notion that these different ways of thinking have a correlation with gender.27 The ethics of care is an important domain of work to which I return below, but it is only one variety of feminist work. Indeed, its merits and demerits are hotly debated by feminists themselves. Some object to what they see as its valorization of negative traits born of subordination and the need to please. Others object that the ethics of care should not go so far as to jettison rights and justice. A further complaint is that the ethics of care offers too little analytic rigor in facing moral problems. Indeed, some classify the ethics of care as "feminine" ethics rather than "feminist." 28 My point here is not to attack the ethics of care. Instead, it is to debunk the notion that feminist ethics equals the ethics of care. The two are not synonymous. The shape and scope of feminist work vary by discipline. In law, central tasks of feminist work have been to uncover gender bias in the law as written and as applied; to show how gender bias is a means of domination; to debate the preferability of equal treatment versus special treatment for women; to discover the way gender and gender bias are manifested in the language and constructs of law; to challenge the traditional distinction between the public and private spheres and reconceptualize the role of the state; to critique the sufficiency and even the desirability of rights concepts; and to show how gender bias interlocks with other forms of bias and domination based on race, class, and sexual orientation. In moral philosophy there have been other tasks: to uncover gender bias in traditional philosophical approaches; to challenge some of the linchpins of those approaches, such as impartiality and universalizability; to question the adequacy of a morality built on deduction from abstract principles with too little attention to particulars, context, and relationships; to describe different ways of analyzing and responding to moral problems and debate their connection to gender; to articulate and debate an ethics of care specifically and show what relationship it might have to an ethics of justice or rights; to challenge the traditional centrality of a liberal individualism that prizes autonomy and devalues interdependency; and to revive attention to the role of the emotions and virtues in moral life. Finally, feminists who work in the philosophy of science have challenged the notion that science can be done neutrally, unaffected by one's standpoint; have scrutinized the language and constructs of science, uncovering gendered notions; have suggested there may be different ways of doing science and relating to one's subject, which in turn may be correlated with gender; have uncovered gender bias in the

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observational sciences and the theories built on those observations; and have challenged the uses of science and technology. As should be clear, feminism is not some pre-set agenda imposed in a regimented way on each discipline that happens to land in its path. Feminists who work in the disciplines that have contributed to modern bioethics are scholars working to reconceptualize their disciplines' questions, answers, methods, and boundaries. They have found ample cause for concern in their home disciplines, including a legal tradition that has treated women as property and been exceedingly slow to condemn domestic violence, acquaintance rape, and sexual harassment; plus a long and famous history of explicitly misogynist statements from many of the great philosophers comprising the dominant Western moral tradition. One still sometimes hears the objection that feminist work is somehow not part of these disciplines, that it is fundamentally antiintellectual, "merely" an agenda for social change. In some ways this is a compliment. It acknowledges that feminists stand outside the old order in some sense, seek fundamental change, and usually care not just about theoretical shifts but real change for real people. Indeed, some feminists would be delighted to hear such an accusation, because of concern that their academic work may be too removed from worldly change. Yet in other ways the accusation is an attempt to marginalize feminist work, to treat it as outside the primary work of a discipline. Ultimately, that attempt fails on any serious reading of the important feminist literature, certainly in the disciplines that prominently contribute to bioethics. The texts themselves and the contributions they make, large and small, are the final answer. In fact, feminist work is so widely considered an important part of jurisprudence and philosophy, among other fields, that the complaint itself seems to be withering away.

Bioethics in Isolation from Feminism Modern bioethics is a creature of the late 1960s and early 1970s.29 It has concerned itself preeminently with the protection of vulnerable patients and research subjects, the relationship between medical and scientific fact and social meaning, and the ethics that should guide physicians and scientists. All of this should have led bioethics to an intimate engagement with feminist work. After all, feminist work has focused on historical patterns of dominance and subordination. It has also focused on the relationship between the biological fact of one's sex and the social meaning of gender. And feminism has offered a critique of social hierarchy and the power of professionals. Thus feminists have analyzed some of the same phenomena as bioethicists. Moreover, feminist work has offered intellectual tools and


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models that bioethicists might have found useful. Yet even this understates the reasons why one might have expected modern bioethics to pay close attention to feminist writing. Gender itself has cried out for analysis in bioethics. Women are more often patients in the United States and have more physician contacts.30 Even when women are not themselves patients, they frequently have to make the decisions about when others should go to a health professional.31 They have made those decisions as mothers, as wives, and in other intimate roles. If the users of medical care have mostly been women, the physicians providing care have mostly been men.32 Thus the paradigmatic medical encounter has involved a woman needing care going to a professional man. When bioethics has complained of physician "paternalism," the term could have been construed in its literal, gendered sense: the physician dominating and deciding as a father would. Of course, there were even more stories of gender lurking. Healers have not always been predominantly men. The male physicians who have dominated in modern times displaced female healers. Paul Starr writes, "In colonial America, . . . most medical care was routinely provided by women in the home. Women were also prominent as lay practitioners. . . . [M]edical practice in New Jersey as late as 1818 belonged almost entirely to women." 33 Those female healers, including midwives, practiced a very different kind of medicine. Their relationships with patients were less hierarchical and dominating. Their claims to knowledge also were based more on mastery of information accessible to lay people and less on assertions of esoteric insight available only to the professionally initiated.34 Here too, then, there was a historical gender dynamic behind the role carved out by physicians. Yet bioethics largely ignored it. Even the choice of bioethics to focus mainly on physicians in the health care arena was a choice to attend to men and ignore women. While men dominated among physicians, the idea that most caregivers were physicians was an illusion. In acute care settings such as hospitals, nurses have outnumbered physicians and delivered far more hands-on care.35 In long-term care settings such as nursing homes, nurses and nurses' aides have been the primary caregivers to an even greater extent, usually only punctuated by the occasional physician visit.36 In the home, caregiving has overwhelmingly been done by women.37 Yet bioethics has viewed all these women as marginal and the physician as central. Turning from the gender of the actors to the nature of the illness and disabilities that bioethics has analyzed, again gender seems to have been largely overlooked. Some of the largest controversies in bioethics have been about reproductive issues, issues in which women have a

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fundamentally different stake. To many people it now seems almost unimaginable that one could debate abortion, surrogate (or contract) motherhood, maternal-fetal relations, and the use of fetal tissue while ignoring the fact that the adult whose body is at stake is a woman. Ethical and legal rules on all of these problems will affect women first and most, and analysis of such rules must attend to the gender inequalities they may reinforce or create. Yet bioethics has largely ignored this. Even more profoundly, our societal definitions of what constitutes illness and thus merits medical attention have been influenced by gender. Historians have argued that defining women's psychological reactions as madness and women's usual physical functioning as pathological have reflected the biases and misogyny of the day. 38 Thus the medical sphere has been a major arena in which gender bias and conceptualizations of the female body as somehow defective have been played out. At the same time, women have indeed experienced a higher frequency of some illnesses and conditions. Clinical depression, migraine headaches, and osteoporosis, for example, do affect women more often than men.39 Investigating why demands attention to gender. Gender must also come to the fore when examining why some conditions affecting women have historically been ignored. For example, only recently has the medical community appreciated the incidence of cardiac illness among women. Instead, heart attacks and cardiac disease have inaccurately been viewed as predominantly men's problems.40 Again, understanding why some conditions wrongly come to be stereotyped by gender requires attention to gender's role. Until recently gender has played a large but unexamined role in the research sphere as well. Modern bioethics has differentiated research and treatment, creating distinct ethical rules with heightened consent requirements and greater restrictions when human beings are acting as research subjects rather than simply receiving treatment.41 But bioethics has not paid sufficient attention to the release of drugs without adequate testing for safety and efficacy in women. Nor has bioethics focused enough on the systematic exclusion of women, particularly women of childbearing age, from AIDS research protocols that may be the only means of access to a promising drug. Indeed, until recently there has been little attention to gender in the literature on research ethics. There has been little analysis of gender equity in the selection of subjects. And again, until recently, we see inadequate scrutiny of how research moneys are allocated, whether women's health problems are receiving adequate research support, and whether women and their health professionals are getting the data they need to make sound treatment choices. Gender has also been largely ignored in bioethical analysis of health


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policy. As bioethicists have debated the care of the poor and the aged, we have devoted too little attention to the fact that the poor are disproportionately women and children, and the aged disproportionately female.42 Thus any health policy differentially affecting the poor and the elderly cries out for analysis by gender. 43 When health care reimbursement schemes are debated that involve releasing patients from hospitals earlier and sicker, we need to acknowledge that the need for care does not vanish. The burden of care is shifted, usually to a woman in the home.44 Over and over, gender seems to be playing an important role, now and historically. And the fact is finally being acknowledged in high places. The National Institutes of Health (NIH) under the directorship of Dr. Bernadine Healy created an Office of Research on Women's Health in 1990. The NIH has also initiated and funded a multi-center study of women's health called the Women's Health Initiative. There have been calls for the establishment of a new medical specialty of women's health, born of frustration with the current disorganized approach.45 Yet almost none of this new attention to women's health issues is a product of work in bioethics. Bioethics has similarly failed to pay much attention to the women's movement's vigorous critique of medicine and health care. The women's movement has criticized medical inattention to incest, rape, and domestic violence; to women's health matters such as breast cancer and cystitis; and to the special effects in women of cardiac illness and other conditions affecting both men and women. It has challenged medical definitions of depression and other conditions, as well as medical responses to childbirth and menopause, arguing that the medical community has embraced sexist presumptions and medicalized normal parts of women's lives. It has decried harm caused to women by interventions such as diethylstilbestrol (DES), intrauterine devices (lUDs), and breast implants. It has objected to paternalistic and infantalizing patient-physician relations, and instead has sought new models of therapeutic relationships in the work of nurse-practitioners, midwives, feminist clinics, and the women's self-help health movement. It has focused attention on physician sexual abuse of patients, psychotherapists who engage in sexual behavior with their patients, and the question of whether sex with patients should also be forbidden after the termination of psychotherapy. Yet there has been surprisingly little bioethical response. So why has bioethics not embraced gender as analytically central and feminist critique as important? After all, modern bioethics has been a passionate plea for patients' and research subjects' moral and legal rights. It grew up alongside other rights movements—for civil rights and, in fact, women's rights. Many of the issues bioethics has deemed central should have thrust gender onto center stage: surrogate mother-

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hood, abortion, the use of fetal tissue, maternal-fetal relations. The cases that have played a big role in the development of bioethics could have done the same, for we find Mrs. Schloendorff, Karen Ann Quinlan, Claire Conroy, Elizabeth Bouvia, Mary Beth Whitehead, Nancy Beth Cruzan, Debbie, Diane, Baby Fae, Baby Jane Doe, 46 and many others. There have surely been important cases featuring men; the point is not a statistical predominance of women's cases, but rather that a deep analysis of any of these cases might have provoked serious attention to gender. Finally, the experience of women health care professionals might have spurred concern with gender and feminist work. Nurses have long struggled with hierarchy and subordination, competing conceptions of their role, the question of how to handle unethical orders from physicians, and even abuse. We now discover that not only medical students but physicians at all levels, including the very senior, experience sexual harassment.47 Women also suffer from additional obstacles to their advancement in academic medicine and so remain underrepresented in the highest ranks.48 Yet bioethics until quite recently has largely failed to respond to any of this with attention to gender and feminist work. Explaining why is critical. Until we know why, the wall between bioethics and feminism is likely to remain. Moreover, the blocks of that wall may be built into the very structure of bioethics. If so, a full-scale reexamination of that structure is in order.

Explaining the Wall of Separation I have already rejected the demographic analysis that would explain inattention to feminism as a product of too few women in bioethics. Instead, the inattention seems grounded in the nature of the field itself. Four features in particular seem responsible: a historical preference for abstract rules and principles that disregarded individual differences and context; an embrace of liberal individualism that obscured the importance of groups; the structure of bioethics as a field frequently serving government, medical schools, hospitals, and health professionals in a way that may have discouraged attention to the views of people lacking power inside and outside those institutions; and the frequent isolation of bioethics from major trends within the academy, including feminism, Critical Race Theory, and postmodernism.

The Dominance of Principles The historical preference for reasoning from abstract rules and principles has recently become a target of widespread critique within the


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field of bioethics itself. Most of these critics have nothing to do with feminist work. They ground their rejection of a relatively top-down or deductivist approach on the view that a more bottom-up or inductive alternative is superior. Thus some advocate casuistry, others a rich ethnography as the starting point, and still others a specified principlism that involves increasing specification of norms as the moral judge travels between the particulars of cases and more global norms. Feminists, too, have struggled with these issues for quite a while. Feminist work contributes the specific concern that universal moral rules or principles posited for the abstract, generic person erase that person's gender (not to mention race, class, and other characteristics).49 This makes it difficult to query the significance of gender in the moral situation. It is only when a situation is appreciated in its particulars that the full moral problem and plausible tools for its resolution appear. Defenders of a top-down ethics driven by principles or rules might respond that this criticism requires merely a corrective attention to gender in applying the rules or principles. Thus justice, to cite one of the principles usually held central in bioethics, could be understood to require justice between genders. Yet this does not fully respond to the problem. Feminist standpoint theorists have shown that there is no neutral standpoint from which to impose the moral principles and rules, even if they include a requirement of gender justice. One's standpoint (including one's gender) can affect what is perceived as a problem in the first place, and then each step of the analysis. Is the exclusion of women of childbearing age from research protocols out of fear of adverse effects on a fetus morally wrong? It depends on one's standpoint. A mere insistence on justice between genders will not tell you. Feminist work adds yet another piece to this puzzle. Reasoning from abstract rules and principles governed by requirements of universality and impartiality overlooks the importance of partiality, context, and relational bonds in moral life. A substantial feminist literature argues the positive moral value of partiality and even its inescapability. 50 Another somewhat overlapping feminist literature argues the value of reasoning from a full or "thick" appreciation of context using what has come to be called an ethics of care. 51 Modern bioethics has been largely deaf to these feminist perspectives. An early commitment to the universals, impartiality, and systems building exemplified by Kant made hearing these different perspectives difficult. Tom Beauchamp and James Childress in the fourth edition of their Principles of Biomedical Ethics indicate as much: "The care ethic provides a needed corrective."52 The Principles book itself has been blamed by many of the nonfeminist inductivists for rigidifying an early deductivism in bioethics.

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As Beauchamp and Childress have rejoined, the indictment is not entirely warranted; they never proposed a completely deductive system whose principles were merely to be applied to specific cases. The fourth edition of their book goes further than before to demonstrate that moral reasoning is two-way—bottom-up as well as top-down. Thus we have an argument not over alternative models that are purely deductive or inductive, but alternative admixtures of deductivism and inductivism. Some might say this moots the debate, that we all now agree on some form of reflective equilibrium, as Rawls would call it, even if the admixtures vary from camp to camp. Yet as someone trained in the law, I find the debate not mooted, merely more realistic. Much debate in law and jurisprudence is precisely on the question of how to travel between cases and higher-order generalizations. The debate starts, not ends with the recognition that you must travel both ways; the question is exactly how.

Liberal Individualism In keeping with an early allegiance not only to Kant but to John Stuart Mill, bioethics has embraced a liberal individualism with more vigor than it has embraced anything else. The bioethics revolution to establish patients' and research subjects' rights has been an effort to unseat both traditional physician paternalism and a societal willingness to sacrifice the individual. The central tool has been the esteem of the individual as an end not a means and as someone entitled to self-rule or autonomy. This attempted shift in ethical perspective has provoked considerable ambivalence. The clinic has been the site of greatest reluctance as physicians manifest uncertainty, mixed feelings, and outright resistance. Even within bioethics itself, devotion to patient and subject autonomy has been criticized.53 Some have emphasized that it stands on par with, not above, principles of beneficence, nonmaleficence, and justice and must sometimes yield in the event of conflict. Others go further, insisting that communal interests take precedence. Still others offer an intermediate view that autonomy cannot become an obsession, lest we find ourselves with no guidance on how to use it. They complain that we risk holding such a thin theory of the good—one that merely values allowing whatever agents choose—that there is little good we can collectively celebrate. Feminists too have criticized liberal individualism on several scores. By depicting the moral community as a set of atomistic and self-serving individuals, it strips away relationships that are morally central. This not only is impoverished, but may also be harmful, because it encourages disregard of those bonds. It is also inaccurate; developing children as well as full-grown adults are profoundly interdependent. Indeed, we are


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so interdependent that we cannot even understand the terms of moral debate without some community process and shared understanding. In the face of this, feminists have been split on the utility of individual rights and rights rhetoric. Yet many would maintain that rights have played a vital historical role and remain necessary, though not sufficient. Rights of self-determination, bodily self-rule, and freedom from coercion remain critical, including in the clinical sphere. Thus there is some overlap between non-feminist communitarian critiques of autonomy in bioethics and feminist cautions against mistaking autonomy's sufficiency. Yet feminism would introduce a further distinct concern. Until recently, the key concerns in bioethics have been mainly dyadic—the relationship between a doctor and patient, between a researcher and subject, or between a nurse and the physician giving orders, for example. This has obscured the importance of groups to which actors may belong, including groups based on gender. Yes, bioethics has recognized that Jehovah's Witnesses or other religious groups have distinct views, because those groups have asserted them forcefully. But bioethics has rarely considered that a patient or subject or nurse may experience a problem because she is a woman or a person of color or a lesbian. There is need for caution here. I am not saying that all women or all people of color or all lesbians experience the same thing. That would fall into the trap of essentialism that many feminists, especially feminists of color, have decried.54 But one can remain alert to difference and seek to be schooled by the varieties of experience, and still investigate the significance of being identified with a certain group. Indeed, as data emerge showing correlations between health care and gender, as well as race and insurance status, it becomes all the more important to consider an individual's membership or perceived membership in a group. Moreover, there are some harms that only achieve the status of a moral wrong when one considers groups. An individual woman, for example, may have no right to participate in an experimental drug protocol. But if that protocol or all protocols systematically exclude a group of people on account of their gender, that may well be an ethical wrong. Bioethics has not been totally blind to the moral significance of groups. Part of the outrage precipitated by the Tuskegee debacle was due to the fact that the Public Health Service was preying on African American men, and men who were poor. Later concern over genetic screening for sickle-cell disease before a useful intervention was recognized was fueled in part by the fact that the population targeted was again African American. Bioethics has also worried about age groups such as the elderly and newborns, about people who share a medical

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condition such as the persistent vegetative state, and about people of compromised decisional capacity. Yet what moral attention bioethics has devoted to groups has largely excluded women, at least until recent data made clear disparities in treatment and research by gender. Before that, the many studies and analyses from outside bioethics of how women were treated differently by doctors made little apparent impression within the bioethics community. Perhaps this was because gender was too often combined with other characteristics, such as having to decide whether to carry a fetus to term or whether to accept a cesarean section. Thus we could talk about the seemingly genderless person having to make these decisions without focusing on what importance gender itself might have. Perhaps, too, the salience of gender has been obscured by the fact that women have no lock on suffering as patients and research subjects. Plenty of men have suffered as well. The first order of business in bioethics was to champion "the patient" and "the research subject" apart from questions of gender. Yet that agenda has probably delayed attention to significant differences among patients and subjects—differences of gender, race, and insurance status. The safeguards and principles we have developed in bioethics do not seem to apply equally to all. We have developed a bioethics primarily for the person with access to health care and with a doctor likely to listen to, understand, and respect that person. It is a bioethics for the privileged. Feminism would insist we ask who has been left out of this enterprise. If bioethics assumes a patient of the dominant gender and race and a patient of resources in its writings and reasoning, feminists would object. If bioethics as applied in the clinic fails to achieve much for certain members of society, feminists would ask why.

Who Is the Client? Bioethics is not practiced in a vacuum. The field tends to serve certain clients. Thus we bioethicists respond to questions presented by physicians, other health professionals, administrators of health care institutions, and governmental bodies. When bioethicists sit on hospital ethics committees or Institutional Review Boards (IRBs), when we go on rounds through a hospital ward or deliver Grand Rounds, and when we sit on the ethics committees of medical professional societies, we are usually responding to concerns presented not by patients and families but by professionals.55 And when bioethicists sit on bodies such as the President's Commission on Biomedical Ethics,56 or state analogues such as the New York State Task Force on Life and the Law,57 we are responding to questions put by government on matters such as declaring death, protecting human subjects in research, and regulating surrogate motherhood.


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This raises the question of whom bioethics serves. The question is made all the more important when you consider the structural context within which bioethics is done. There are actually a variety of contexts, from free-standing research institutes, to medical schools and other university faculties, to health care institutions and systems, as well as governmental bodies. The overarching question is whether we bioethicists retain enough independence and distance from the very institutions that often employ and house us to do genuinely critical work. This is not a new concern in bioethics. It surfaces periodically. A lively debate has continued over whom hospital ethics committees serve, for example—patients or the institution.58 A related debate has persisted over whether IRBs housed in the very institution whose research they are reviewing have too great a conflict of interest and should be supplemented or replaced by more independent bodies or perhaps a national IRB.59 Individual bioethicists have also grappled with the question of whom they serve in consulting on clinical cases— the health care institution, the health professionals, or the patient and the patient's loved ones. 60 A few bioethicists have expressed more general fears that bioethics may have lost its critical capacity. They worry that bioethics has stopped asking the big questions; instead of debating whether a technology such as human cloning should be used at all, we end up debating merely how it should be used.61 The concern is that bioethics has become a facilitator of science and medicine rather than a genuine critic. This concern has been most pronounced in relation to the Human Genome Project. A portion of that project's enormous budget is earmarked for the study of ethical, legal, and social issues (the ELSI program).62 This represents the largest single pot of funds set aside for bioethics to date. But the question is whether we bioethicists can compete for and use this support while retaining a sufficiently independent and critical perspective on the project funding us. These questions on the structure of bioethics itself have not yet received adequate attention within bioethics. For the moment bioethics remains largely a discussion among those in power—experts, professionals, and governmental authorities.63 Thus it is not at all surprising that bioethics has mainly turned a deaf ear to feminist work. That work, after all, is a critique of current power arrangements and hierarchy. Bioethics itself has been a partial critique—a demand that physicians and scientists inform their patients and subjects, and then abide by the choices those laypeople make. As ambitious as this demand is, the demand of feminists is even more so. While bioethics has urged doctors and scientists to share information and respect patients' and subjects' decisions, feminists would seek more—that we ask whether non-physicians should be delivering more care, whether communities

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should be controlling the medical and scientific enterprises, whether women should be determining the degree to which normal life events such as childbirth and menopause should be medicalized, whether medicine and science should be held accountable for their historical effects on women, and so on. While bioethics has entered into collaborative relationships with the powers that be, feminists have criticized and sought to unseat the powers that be, because of practices that penalize and subordinate on the basis of gender. Feminists would claim that the powers that be in medicine, science, and government are likely to be those with the greatest stake in retaining some version of the status quo. When bioethics enters into partnership with those experts and authorities, it is allying itself with those least interested in feminist challenges to traditional hierarchies. Thus when bioethics focuses on hospitals, professional societies, and physician-patient relations and ignores feminist clinics, the Black Women's Health Project, and nurse-practitioner-patient relations, bioethics is ensuring its isolation from feminist thought.

Distance from Major Academic Developments Feminist work is only one of several intellectual currents widely valued and debated in the humanities and law, yet largely overlooked by bioethics. Critical theory generally, Critical Race Theory and other forms of race-attentive analysis, and postmodern scholarship, to name three more, have scarcely been found in bioethics to date. One might conclude that bioethics has managed a sort of isolation from major trends in the academy. But the picture is more complex. The upsurge of academic interest in narrative has spawned attention to narrative and narrative ethics in bioethics, 64 so the isolation seems selective. One clue to this pattern may lie in the relation of work ignored and work embraced to medicine and science. The appeal of narrative ethics is probably based on the traditional importance of cases in medicine and in the scientific study of human beings. Cases, after all, are mininarratives. Indeed, there is a substantial advocacy within bioethics for case-based casuistry as a mode of ethical reasoning.65 Bioethicists intrigued with narrative and narrative ethics have called for richer and more complete case narratives.66 Thus the enthusiasm for narrative among bioethicists meshes nicely with a long tradition in medicine and science. The ignored domains do not. Critical Race Theory and postmodernism, for instance, have no obvious correlates in the traditions of medicine and science. They should, of course. Analysis of the role of race in medicine could have taught us much. And Foucault's early Birth of the Clinic67 could have forged the way for a rich deconstructive and postmodern look at medical and scientific practices and texts. But bio-


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ethics, despite its claims to be a source of critique, may have been most ready to embrace those intellectual currents least threatening and foreign to medicine and science.

Feminist Possibilities in Bioethics Then what might a bioethics attentive to gender and feminist analysis look like? Others beginning to write about feminist bioethics have examined this question as well. We agree that a feminist bioethics would recognize that moral analysis requires attention to gender; there is too long a history of harm, inequality, and disadvantage based on gender to ignore the category. Indeed, ignoring it merely helps to keep such oppression invisible and alive. A feminist bioethics would do more than use gender as an analytic category; it would oppose harm to women. This claim is more complex than it might appear. It requires bioethics to take a moral and political stand, at least a broad one, opposing some kinds of harm. Requiring this is based on the insight that there is no such thing as a neutral bioethics, one that views problems from a vantage point unsituated in the moral and political universe. This claim is familiar to feminists, who recognize theorizing as an activity with consequences in the world.68 But it may be more unfamiliar to some bioethicists. Yet even traditional and mainstream bioethics takes a perspective that is situated. Modern bioethics is committed to protecting the patient and research subject from harms by the physician and researcher. The four a priori principles so common in bioethics are the statement of the vantage point from which bioethical analysis then proceeds. Those principles highlight certain harms: failures of patient autonomy, of caregiver beneficence and nonmaleficence, and of justice. They are less successful in highlighting others, including failures based specifically on gender, race, and insurance status. Although some have argued that the four principles, and particularly justice, can be reunderstood to condemn harm perpetrated on the basis of gender, 69 the principles have not yet been notably successful in accomplishing this shift of perspective. The principles leave out other things as well: the failure to delimit the proper boundaries of medicine and what should be medicalized, the failure to view the medical enterprise from the standpoint of patients, the failure to recognize the particular vantage point and needs of different individual patients. In other words, the principles overlook the importance of boundaries, standpoint, and particularity. The point is that bioethics is already situated, and unavoidably so. Even those who would show us how far the four principles and dominant analytic paradigm can be stretched to oppose harm based on gen-

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der are not disputing that bioethics has a vantage point. They are merely arguing that its vantage point should be further specified. Beyond attending to gender and opposing harm to women, in what way would a bioethics that took feminism seriously be different from what we have now? Its subjects, epistemology, and analysis would all be different.

Subjects Susan Sherwin has been articulate about the subjects that a feminist bioethics would discover.70 Women's experience of health care and science would give one set of problems a new prominence. For example, most bioethicists would surely regard physician sex with patients as a serious wrong, and psychotherapist sex with patients after termination of therapy at least problematic. Yet bioethics tends to regard sex with patients as a hideous aberration. A feminist bioethics would regard such events not so much as isolated transgressions, but as extreme events that tell us something fundamental about the problems that pervade patient-physician relations. By analogy, feminist analysis has seen father-daughter incest not in isolation, but as the furthest point along a spectrum of seductiveness and abuse of power, whose prevention lies in part in restructuring familial relations so that fathers share with mothers a real parenting role.71 Similarly, physician and scientist transgressions can lead to a thoroughgoing analysis of their relations with patients and subjects. Indeed, such analysis will suggest that comparisons with the family are more than analogies. When bioethics uses the familial language of "paternalism" to talk about physician behavior, we implicitly acknowledge a connection with the family. In fact, historians will tell us that most health care was traditionally provided within the family, only later yielding to health care delivered mostly by strangers.72 A psychoanalytic observer of the patient-physician relationship will tell us that patients still project on their physicians the sorts of wishes and expectations one has of a family member.73 Legal scholars will tell us that analysis of the patient-physician relationship has been hampered by mistaking it as something private (and thus on the traditionally domestic side of the private/public distinction74) rather than fully subject to the demands we place on something public. 75 A feminist bioethics will thus give new prominence and understanding to harmful behavior by physicians and scientists. It will also focus on specific medical and scientific practices that have harmed women. It will examine the problematic history of DES, lUDs, breast implants, unnecessary and forced cesareans, not to demonize medicine and science but for the broader lessons such events teach. Some of those lessons will be about the need to reexamine the role of medicine and


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science. The historical medicalization of childbirth, menstruation, and menopause; the debate over medical collaboration in cultural practices of female genital mutilation; and the question of what duties physicians have in responding to domestic violence are all matters that invite us to reshape that role. But it is a task that cannot be done without understanding what the role has been and what gender dynamics helped shape it in the first place. Certainly a feminist bioethics will analyze the practices of excluding women and women's health problems from research. In the treatment arena too, such a bioethics will analyze the data correlating gender with reduced access to cardiac, renal, and other forms of therapy. Both analyses will be complex. They will require distinguishing correlation from causation, evaluating justifications given for disparate treatment (such as differences in biology by gender, the possibility of harm to a fetus, or the lesser prevalence of a disease in women), and developing criteria for determining when differences - in research and treatment cannot be adequately justified and are morally wrong. A feminist bioethics will pay special attention to subjects that emerge from the experiences of women who bear added burdens in dealing with the health care and scientific enterprises. For example, poor, African American women have disproportionately been the targets of attempted criminal prosecutions of drug-using pregnant women.76 African American and Hispanic women are also disproportionately the women diagnosed with AIDS in this country. 77 A feminist bioethics would insist on concentrated analysis of these problems. Feminists have struggled among themselves to uproot assumptions that all women share the same experiences, exposing the arrogance and essentialism behind that assumption. Now built into feminist method is the insistence that analysis start with attention to the individual, particularity, and context. I say more about method in the discussion that follows. Here the claim is that a feminist bioethics would not group all females under the rubric "woman" and proceed with a monolithic analysis, but would deliberately attend to differences. In examining health care and science, a feminist bioethics should begin with attention to those historically least served and most harmed. A feminist bioethics will have much to say about disability. A hallmark of feminist work has been its differentiation of the biological fact of sex from the cultural construction of gender, and from an understanding of how gender operates as a category in the world.78 Thus feminists turn to the supposed biological fact of disability skeptically. Martha Minow, for example, shows how disability and its effects are a function of societal choice. 79 For example, a work place built to enable people of different abilities and limits to function will render fewer of them "disabled" than a work place built for only one nodal type. Thus

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the category of "disability" is plastic and reveals underlying social dynamics in ways analogous to sex and gender. A feminist bioethics would be able to apply some of these same analytic tools to other areas in bioethics as well. Genetics is an obvious domain. The explosion of genetic knowledge and an international commitment to the Human Genome Project raise again the risks of biological reductionism. There is danger of mistaking the biological fact of genotype to be the essence of a person and a justified occasion for differences in treatment. Non-feminists and feminists are worried about this already, but the latter bring a history of debunking notions that biological sex by itself determines gender, that culture matters little, and that biology alone is reason for different treatment. Feminists also bring special tools to debates about sexual orientation. Bioethics has paid attention to sexual orientation fitfully. The psychiatric profession's declassification of homosexuality as a disorder, debates on whether same-sex couples should have free access to reproductive technologies, and the early eruption of the HIV epidemic in the United States in part within the gay community have all occasioned some analysis by bioethicists.80 Yet for the most part sexual orientation has not been a focus. Feminist work would encourage more sustained analysis of the assumptions about sexual orientation underlying medical and scientific practices and policy. 81 A feminist bioethics would, of course, analyze the role of women not just as patients and research subjects, but also as family caregivers and as professional or lay healers. A feminist literature on women in medicine, nursing, and science has already emerged.82 In part it explores gender-related problems, such as sexual harassment in medical training and barriers to advancement. The feminist literature, however, also explores differences in method and outlook that may be associated with gender. This means not only asking whether women may sometimes think differently about health care and science, but also asking whether they may treat patients and research subjects differently. 83 Thus the role of gender in structuring the healing and research enterprises, and new possibilities produced by the influx of women, would both be important concerns for a feminist bioethics.

Epistemology It is not clear that bioethics has an explicit epistemology, a theory of how bioethical knowledge is produced. One widely held, although not universal, notion within bioethics is that generating bioethical insight does not require agreement at the level of fundamental theory. Thus Beauchamp and Childress reject the notion that one must choose a single theory from among the competitors. They claim that "[f ]ar more social consensus exists about principles and rules drawn from the common morality . . . than about theories." 84


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But if generating bioethics knowledge starts from "common morality" or is usually approached as a matter of achieving reasoned agreement, the relevant community and rules of agreement are rarely stated. Observing bioethics in action, however, sheds some light. As the discussion of whom bioethics tends to serve reveals, bioethics appears to be a conversation among experts, especially bioethicists, physicians, scientists, and governmental authorities. There has been great concern with patients' and research subjects' rights, but those people tend to be the objects of concern rather than full members of the ethical conversation. Feminists would find this immediately suspect. A number have developed feminist epistemologies.85 It is important to clarify that these are theories of the practices that produce knowledge (to paraphrase Helen Longino),86 not restatements of the idea first popularized by Carol Gilligan that women may tend to see moral problems differently. Feminist epistemologies investigate the relationship between power, gender, and the means of generating authoritative knowledge. Their general goal is "the expansion of democracy in the production of knowledge." 87 There are different proposals for how to achieve this goal. Longino emphasizes the importance of a diverse community including alternative viewpoints. There should be publicly recognized forums for exchange, change over time in response to critical discourse, publicly recognized standards of evaluation, and agreement produced by dialogue rather than the exercise of power or exclusion.88 Applying this to bioethics would highlight two problems. First, a "diverse community" might be construed simply to require diverse experts, not the inclusion of laypeople. But this suggests that bioethical expertise belongs only to experts. While surely training in bioethics confers some kind of expertise, few would argue that only bioethicists, medical and scientific experts, and governmental authorities should deliberate over questions such as whether a patient receives further lifesustaining treatment, who receives an organ transplant, whether physician-assisted suicide should be allowed, or how scarce medical resources should be allocated. There is also a strong moral argument for including in the deliberation those who will be most affected and potentially disadvantaged by its outcome. Consequently, in bioethics the "diverse community" ought to include laypeople, and specifically those laypeople at risk of disadvantage including women, people of color, and the uninsured. This epistemological view of how bioethics knowledge should be generated thus requires a restructuring of practices within the field to make them inclusive. The second issue Longino's standards raise is the lack of public standards for agreement in bioethics. Indeed, studies show substantial disagreement among IRBs considering whether to approve research

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Introduction: Gender and Feminism in Bioethics 89

proposals and among bioethics consultants who advise on cases.90 Yet if part of the task facing bioethics is to generate such standards, then the same people currently underrepresented in discussion of specific bioethics problems have even more reason to be involved in this meta-dialogue about standards. This, too, would mandate a restructuring of bioethics practice. Another prominent version of feminist epistemology is standpoint theory. This approach is born of a general skepticism that there is any such thing as insight and theory unaffected by standpoint. Sandra Harding, for example, has written on the application of standpoint theory to science.91 Feminist standpoint theorists have argued that the most disadvantaged in society have special insight into what is wrong and needs to be fixed in current arrangements. Gender has a substantial influence on who is advantaged and disadvantaged in our society and thus on standpoint. One need not decide between different feminist epistemologies to understand that bioethics would be changed by addressing the questions these epistemologists ask. It would not remain a dialogue of experts. Instead of persistently analyzing bioethics problems from the physician's or scientist's vantage point by asking what the doctor or scientist should do, we would at least as energetically view bioethics problems from the standpoint of the patient, subject, or citizenry. We would ensure their participation in the disciplinary dialogue. This would be a substantial change in bioethics. It would immediately bring to the fore problems that the traditional bioethics perspective—one that is physician- and scientist-centered—has made it difficult to highlight: how do patients get into the health care system in the first place; when is an alternative preferable; when should someone see a physician; how can scientists be induced to study a particular problem; and how can physicians and scientists be held accountable to patients, subjects, and citizens. It would render lay accounts and social science analyses at least as important as the professional medical and scientific accounts. It would force bioethics to take a close look at caregiving and research options outside of traditional medicine and science. This kind of bioethics would require us to learn from patients, subjects, families, and communities. All would have a place at the ethics committee table, the IRB meeting, and the ethics conference podium, to name only three forums. No longer would a token community member be sufficient.

Analytic Method I have already suggested that the extensive feminist literature on the importance of context and particularity in moral and legal reasoning, and the feminist challenge to universality and impartiality, would have


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much to say in the ongoing bioethics debates over method. Largely absent so far from the bioethics discussions of principlism, specified principlism, casuistry, ethnography, and other alternatives is serious attention to the feminist work that is directly relevant. Again, there is room for a variety of feminist viewpoints. Yet certain commonalities are likely. Feminist writers on analytic method in bioethics will demand a rich empiricism and attention to lived experience as the starting point for identifying those problems in need of analysis. They will recognize that even the process of identifying and then describing problems is driven by one's perspective and agenda. Thus here, too, they will require broad participation in this process, including by women and others actually experiencing these problems. The tools these writers will use in describing problems will be a larger set than usual. There is a substantial feminist literature on the role of partiality, empathy, relational caring, and affect in moral understanding. Bioethicists will have to pay greater attention to these dimensions of moral reasoning and the moral life. Yet the task will not stop there. As already noted, Carol Gilligan and others writing on the ethics of care have argued that partiality or caring will not suffice in moral decision making; Gilligan argues for both relational caring and reasoning from justice. Many have written since on how the two might be combined. The point is that feminist writers would insist on the importance of the ongoing debate in bioethics over how to travel back and forth between specific cases and higher-order normative generalizations, and over what tools are required for moral analysis. They would not dismiss the debate by claiming that there is already general agreement on an overarching coherentism or Rawls's reflective equilibrium. The trend in bioethics toward greater inductivism would undoubtedly be in line with much feminist writing. Feminist work on method would make far richer our sense of the "case" in bioethics, and force attention to power and disadvantage in every aspect of bioethics. But many feminists would simultaneously voice skepticism about even the richest ethnography or empiricism as a fully adequate source of norms. In addition to contributing to the debates about how we should travel between the case and normative generalizations, feminist writers would have much to say about the content of those generalizations. The most prominent set thus far in bioethics is the set of four principles explicated by Beauchamp and Childress: autonomy, beneficence, nonmaleficence, and justice. Clearly all four of these could be applied in a way that ignored or a way that paid attention to gender. Recently, some authors have explored how these principles might attend to gender.92 Even more fundamentally, feminist work could be brought to bear on how these prin-

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ciples might be revised. Work by Jennifer Nedelsky and Martha Minow on autonomy, for example, and by Iris Marion Young and Susan Moller Okin on justice could fuel just such a revision.93 Yet feminist work can go even further and challenge the adequacy of these four principles as criteria for moral evaluation. Missing from the list, for example, is attentiveness to the particularity of the moral situation, something a number of feminists see as fundamental to moral perception and analysis.94 One might also want to require attention to the impact of an action on relationships and the community, even if ultimately the impact on the individual most affected were given priority. And perhaps we should not pack into the single principle of justice our various concerns about the acceptability of societal structures for delivering health care; the distribution of benefits and harms within the framework of those structures; 95 the fairness of that distribution over time; 96 and how this all relates to gender, race, and other characteristics. We might be better served by disaggregating some of these elements and recognizing different types of justice concerns.

Moving Forward The contributors to this volume explore the many changes that feminist work can bring to bioethics—in subject matter, epistemology, and moral analysis. The chapters of Part I explore the relationship between feminism and bioethics. Susan Sherwin starts by observing that bioethics has been largely neutral toward oppression on the basis of gender. Feminist ethics offers tools for changing this. It recommends conducting moral deliberations not just by calculating utilities or applying principles, but by asking who is advantaged and what effect an action will have on those currently disadvantaged. Feminist challenges to central concepts in traditional ethics, such as autonomy, can also fruitfully be brought to bear in bioethics. Feminism both adds new topics for bioethics to examine and changes the analysis of familiar ones. Rosemarie Tong presents a feminist approach to the current bioethics ferment over principlism and its alternatives. She focuses on the potential of liberal, radical, and cultural feminist perspectives to orient a feminist bioethics. Each offers a specific critique of the autonomous self intent on maximizing self-interest, a concept of the self that is at the heart of traditional ethics. Tong then demonstrates how feminist perspectives can enrich bioethics, by analyzing a specific case. She concludes by defending feminist approaches from two possible lines of criticism: that they are not properly theoretical but instead sexist and relativist, or that they are too theoretical and ignore differences of race and class.


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Next, Mary Mahowald proposes feminist standpoint theory as a corrective in health care and in bioethics. She identifies a blindness in both fields to the ethical problems of racism, classism, sexism, and heterosexism, and a simultaneous assumption that "point-ofviewlessness" and universals are possible. Mahowald finds untenable the notion of unsituated knowledge. Thus she turns to feminist standpoint theory and finds a recognition not only that knowledge is situated, but also that some perspectives are privileged—the perspective of those who are dominated. Mahowald then shows how the notion of standpoint can be reformulated so that it does not assume that all women have the same standpoint. After discussing an illustrative case, she proposes proportionate representation in health care and bioethics as a corrective strategy. Dorothy Roberts argues that medical ethics has neglected the experiences of women of color and the effects of receiving care in publicly supported institutions. Instead, it has discussed generic patients and doctors, and has mistakenly viewed medical care as something "private" and removed from the public context. Focusing on the experience of poor women of color shows the fallacies here. These women have endured a long history of dehumanizing treatment. Yet poor women of color do not experience the same problems as other patients in worsened form; they experience different problems that offer special insights into what is wrong with health care. Roberts explores in depth three problems affecting these women: the denial of confidentiality to those who use drugs during pregnancy, the suspension of the obligation of truth-telling condoned by the U.S. Supreme Court in Rust v. Sullivan, and the disregard for the autonomy of these women shown by cases in which medical treatment is compelled during pregnancy. These problems reveal that core requirements of medical ethics are discarded for these patients. But Roberts argues that remedying this will not just add to medical ethics and health care; it will transform them. She explains how reconstructing the patient as a woman of color changes the methods and goals of medical ethics, as well as its critique of the health care system. In the last chapter of Part I, Rebecca Dresser investigates the lessons of the women's self-help health movement for bioethics. Using the publications of the Boston Women's Health Book Collective as a guide, she discovers an important critique of medicine as well as new directions for bioethics. She finds great disaffection with U.S. health care, an identification of specific barriers to good care, and a call to reduce dependence on medical experts. Bioethics shares a number of goals with the women's health movement, yet has paid little attention to it. Dresser argues that the movement's most basic message to bioethics is that gender bias is an ethical problem. Taking this message seriously

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means changing the way bioethicists teach: using our authority in hospitals and medical schools progressively, challenging stereotypes and sexism in case consultations, speaking out on gender bias, and using women's health movement literature and participants. It also means changing our scholarship: paying attention to women's experiences and the particular before proceeding to generalizations, analyzing systemic problems in health care delivery, and resisting the temptation to claim the same kind of neutral and objective expertise we have challenged in physicians. Indeed, Dresser calls for a searching selfappraisal by bioethicists to examine the extent to which we have become part of the very medical system we criticize. Part II brings feminist perspectives to bear on specific problems in bioethics. Laura Purdy begins by examining a fundamental question in bioethics, the definition of health. This question has been much debated, yet not from a feminist perspective. Purdy argues for a broader definition of health that would require not only lack of physical ailments, but also positive well-being. But the evaluation of women's bodies as well or sick is usually conducted not by women themselves but by those in authority. Sexism and other abuses of power can infect the process. Stereotypes of femininity and beauty work their harm here, with eating disorders a common response. Women thus cannot rely on external social standards to tell them what well-being is. Yet women are only beginning to develop their own standards. Purdy argues that these standards must come from a sense of our bodies, but must also be schooled by scientific data through an approach such as reflective equilibrium to combine theory and intuition. Janet Farrell Smith then examines the physician—patient relationship, another central topic in bioethics. She applies a communicative ethics derived from the writings of Jurgen Habermas. Habermas's work is not itself feminist, but modification of that work, prominently by Seyla Benhabib, has made clear the feminist possibilities. Farrell Smith argues that the core insight of communicative ethics is that norms should be derived through a process of conversation that includes those most affected, rather than by the solitary reflection of individual thinkers. This view of the proper origin of norms forces us to consider what conditions must obtain for the conversation to do this work, especially conditions of communicative equality and attention to the specific circumstances of the concrete other. Farrell Smith then applies these insights to the physician-patient relationship. The result is a different view of how to derive norms than is usually seen in bioethics, which typically derives norms through detached reflection without discussion with patients. Using concrete cases Farrell Smith shows how physicianpatient communication should work, and derives "equality principles" and "substantive principles" to guide it.


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Vanessa Merton shifts the focus to the world of biomedical research by considering obstacles that have prevented women from participating as research subjects. She finds a familiar problem—mistaking the male for the generic "human" while the female is ignored. Merton first rejects the notion that exclusion from research is no injustice, by showing that access to new drugs and high quality health care often depends on being included. Exclusion further results in harm to all women through the marketing of untested drugs, through inferior care especially for pregnant women, and through reinforcement of the notion that women are the "other." Merton then considers and rejects four rationales for excluding women: the need to produce supposedly good data by studying only men, the notion that governmental requirements mandate exclusion, concern over exposure to liability, and the idea that including women who may be pregnant is a moral wrong. She finally offers a proposal to ensure full participation and attention to women's health needs, by requiring that eligibility criteria not differentiate by gender and by evaluating all research to determine whether it will illuminate gender-based differences. Ruth Faden, Nancy Kass, and Deven McGraw then investigate the neglect of women in the U.S. response to the HIV epidemic. They argue that both bioethics and biomedical research have largely confined their interest to women's roles as vectors for the infection of others, mainly newborns or sexual partners. Little attention has been paid to women's own health concerns. In support of this they examine the research portfolio of the U.S. Public Health Service, the conduct of AIDS-related clinical trials, and the published literature. They find neglect of women's health concerns and then go on to show that this has caused women harm. Finally, they argue that this pattern constitutes an injustice to women. They do this by beginning with traditional definitions of distributive justice, but then proceeding to consider broader feminist definitions, including in the work of Iris Marion Young. While finding no malevolent intent, they find in the neglect of women's concerns a reflection of biases in biomedical science and in the society at large. My own chapter brings feminist analysis to bear on the debate about whether to legitimate physician-assisted suicide and active euthanasia. First, I examine the role of gender in these practices. Given the traditional condemnation of both practices in the United States, we lack good data. But established gender differences in health care (including the adequacy of pain relief), in health care insurance, in suicidal behavior, and in societal expectations about who should be self-sacrificing give reason to think that gender may play an important role. That role may be complex, and I explore the possibilities. Guided by these concerns about gender differences, I turn to the arguments in favor of

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legitimating these practices. Using feminist approaches, I challenge the notions of autonomy, rights, and physician beneficence usually relied on in those arguments. Ultimately, I turn to the task of reconciling physician obligations to care for the individual patient with a necessary set of normative limits. I advance a notion of "principled caring," arguing that it militates against legitimating these practices. Adrienne Asch and Gail Geller examine what feminist analysis brings to ongoing debate over the Human Genome Project and the growing body of genetic knowledge. They argue that feminist analysis of the relationship between biological sex and the social construction of gender can act as a model for understanding the relationship between genes and the social understanding of inheritance, disease, and disability. Feminist exploration of the meaning of difference can similarly guide the exploration of genetic difference and our construal of what is meant by "normalcy." Third, feminist critiques of technology and science can help locate the limits of genetics as the answer to health and social problems. Asch and Geller detail feminist analyses particularly relevant to genetic testing and then apply these to specific topics: presymptomatic testing for breast cancer, prenatal diagnosis to determine sex among other possible traits, and lastly the role of gender in genetic counseling. Finally, Hilde Lindemann Nelson and James Lindemann Nelson take on a problem of immense concern, justice in the allocation of health care resources. Bioethicists, especially Daniel Callahan and Norman Daniels, have produced important analyses of what justice should require in allocation. Yet the Lindemann Nelsons argue that neither really grapples with gender or feminist analysis. Feminism helps illuminate otherwise hidden injustices toward women and other groups, highlighting, for example, the fact that women over forty are less likely than men to have health insurance, and that tying insurance to employment systematically disadvantages women. Feminism also contributes theoretically. Many feminists are working to reunderstand justice in a way that reconciles individual and communitarian approaches. The authors cite the work of Marilyn Friedman, Seyla Benhabib, and especially Iris Marion Young. Based on this work, the authors formulate guides for just allocation. They show how this can yield a theory of justice. They then proceed to offer concrete proposals for allocation. The chapters in this volume thus tackle not only central problems in bioethics, but the theoretical issues involved in trying to forge a relationship between bioethics and feminist work. They show that feminist critique can play an important part in reshaping the theory and practice of bioethics as we know it now. Bioethics cannot afford to overlook half the world, to ignore the pervasive effects of gender, and to avoid the feminist literature transforming the disciplines that make up this


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field. The task ahead is too great—to make health care, biomedical research, new genetic capabilities, the response to HIV, and decisionsisions about life and death fit for women and men.

Notes 1. Gender-attentive analyses of reproductive technologies include Karen H. Rothenberg and Elizabeth J. Thomson, eds., Women and Prenatal Testing: Facing the Challenges of Genetic Technology (Columbus, OH: Ohio State University Press, 1994); Christine Overall, Ethics and Human Reproduction: A Feminist Analysis (Boston, MA: Allen & Unwin, 1987); Barbara Katz Rothman, The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood (New York, NY: Viking, 1986); Gena Corea, The Mother Machine: Reproductive Technologies from Artificial Insemination to Artificial Wombs (New York, NY: Harper & Row, 1985). Genderattentive analysis of allocation follows in chapter 12 in this volume. 2. On gender in patient-physician relations, see, for example, Alexandra Dundas Todd, Intimate Adversaries: Cultural Conflict between Doctors and Women Patients (Philadelphia, PA: University of Pennsylvania Press, 1989); Sue Fisher, In the Patient's Best Interest: Women and the Politics of Medical Decisions (New Brunswick, NJ: Rutgers University Press, 1986). A number of studies have shown gender disparities in medical treatment. See, for example, Leslee J. Shaw et al., "Gender Differences in the Noninvasive Evaluation and Management of Patients with Suspected Coronary Artery Disease," Annals of Internal Medicine 120 (1994): 559-66; Nicole Lurie et al., "Preventive Care for Women: Does the Sex of the Physician Matter?" New England Journal of Medicine 329 (1993): 478-82; Nanette K. Wenger et al., "Cardiovascular Health and Disease in Women," New England Journal of Medicine 329 (1993): 247-56; Richard M. Steingart et al., "Sex Difference in the Management of Coronary Heart Disease," New England Journal of Medicine 325 (1991): 226-30; John Z. Ayanian and Arnold M. Epstein, "Differences in the Use of Procedures Between Women and Men Hospitalized for Coronary Heart Disease," New England Journal of Medicine 325 (1991): 221-25; Carl M. Kjellstrand, "Age, Sex, and Race Inequality in Renal Transplantation," Archives of Internal Medicine 148 (1988): 1305-09; Carolyn K. Wells and Alvan R. Feinstein, "Detection Bias in the Diagnostic Pursuit of Lung Cancer," American Journal of Epidemiology 128 (1988): 1016-26; Jonathan N. Tobin et al., "Sex Bias in Considering Coronary Bypass Surgery," Annals of Internal Medicine 107 (1987): 19-25; Carl M. Kjellstrand and George M. Logan, "Racial, Sexual and Age Inequalities in Chronic Dialysis," Nephron 45 (1987): 257-63; Stephen Colameco, Lome Becker, and Michael Simpson, "Sex Bias in the Assessment of Patient Complaints," Journal of Family Practice 16 (1983): 1117-21; Paul D. Cleary, David Mechanic, and James R. Greenley, "Sex Differences in Medical Care Utilization: An Empirical Investigation, Journal of Health and Social Behavior 23 (1982): 106-19; Lois M. Verbrugge and Richard P. Steiner, "Physician Treatment of Men and Women Patients: Sex Bias or Appropriate Care?" Medical Care 19 (1981): 609-32. See generally Eileen Nechas and Denise Foley, Unequal Treatment: What You Don't Know About How Women Are Mistreated by the Medical Community (New York, NY: Simon & Schuster, 1994). Articles finding a lack of sex bias, however, include Daniel B. Mark et al., "Absence of Sex Bias in the Referral of Patients for Cardiac Catheterization," New England Journal of Medicine 330 (1994): 110106; Sherine E. Gabriel et al., "Lack of Evidence for Gender Bias in the Utiliza-

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tion of Total Hip Arthroplasty Among Olmstead County, Minnesota Residents with Osteoarthritis," Arthritis and Rheumatology 37 (1994): 1171-76; Patricia K. McGann et al., "Absences of Sex Differences in the Evaluation of Patients Hospitalized for Transient Ischemic Attacks," Journal of Family Practice 39 (1994): 134-39. On the effect of different analytic models on conclusions about sex bias, see Lee A. Green and Mark T. Ruffin IV, "A Closer Examination of Sex Bias in the Treatment of Ischemic Cardiac Disease," Journal of Family Practice 39 (1994): 331-36. In light of the data, some have advocated treating women's health as a new specialty in medicine. See Andrew A. Skolnick, "Women's Health Specialty, Other Issues on Agenda of 'Refraining' Conference," Journal of the American Medical Association 268 (1992): 1813-14; Karen Johnson, "Women's Health: Developing a New Interdisciplinary Specialty," Journal of Women's Health 1 (1992): 95-99; Elisabeth Rosenthal, "Does Fragmented Medicine Harm the Health of Women?" New York Times, Oct. 13, 1993, Al. But see Michelle Harrison, "Women's Health as a Specialty: A Deceptive Solution," Journal of Women's Health 1 (1992): 102-05. In 1991 the American Medical Association's Council on Ethical and Judicial Affairs published a report on "Gender Disparities in Clinical Decision Making," Journal of the American Medical Association 266 (1991): 559-62, discussing "data that suggest that a patient's gender plays an inappropriate role in medical decision making" (p. 561), though also noting the difficulty of designing a study to prove a connection between gender disparities and gender bias by controlling for all other factors that might affect clinical decisions. Accompanying that report, Dr. Bernadine Healy, the first woman director of the National Institutes of Health (NIH), published an editorial proclaiming NIH's commitment to addressing women's health issues, and JAMA called for papers for a theme issue on women's health. Bernadine Healy, "Women's Health, Public Welfare," Journal of the American Medical Association 266 (1991): 566-68; Helene M. Cole, Annette F. Flanagin, and Anne Colston Wentz, "A JAMA Theme Issue on Women's Health: Call for Papers," Journal of the American Medical Association 266 (1991): 568. In 1992, both JAMA and the American Journal of Public Health published such theme issues, as have other journals since. Also in 1992 the Journal of Women's Health began publication. 3. In 1985 the U.S. Public Health Service's Task Force on Women's Health Issues bemoaned a lack of research on women. See U.S. Public Health Service, Women's Health: Report of the Public Health Service Task Force on Women's Health Issues (Washington, DC: U.S. Department of Health and Human Services, 1985). In 1989 the Congressional Caucus for Women's Issues began to consider remedies for the neglect of women's health and requested a General Accounting Office (GAO) study of NIH action on this score. The GAO study was not encouraging. The Caucus then introduced the Women's Health Equity Act (WHEA) of 1990, an omnibus package that was reintroduced in 1991. See Rep. Patricia Schroeder, "Women's Health: A Focus for the 1990s," WHI 2 (Spring 1992): 1-2. Portions were enacted. See Keelyn Friesen, "Non-Passage of the Women's Health Equity Act: Inaction May Lead to Cancerous Results," Hamline Journal of Public Law and Policy 14 (1993): 243-58. Significant provisions were included in the NIH Revitalization Act of 1993, Pub. L. No. 103-43, 107 Stat. 122 (1993). As Dr. Healy noted in her 1991 editorial cited above, the NIH established the Office of Research on Women's Health in 1990. See also Ruth L. Kirschstein, "Research on Women's Health," American Journal of Public Health 81 (1991): 291-93. The head of the Public Health Service (PHS) of the NIH


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announced a PHS Action Plan for Women's Health. James O. Mason, "From the Assistant Secretary of Health, US Public Health Service: A National Agenda for Women's Health," Journal of the American Medical Association 267 (1992): 482. In that same issue, JAMA noted that "[a]ttempts to redress inattention to women as subjects of medical research are shifting into high gear," with the beginning of a 10-year $500 million study called the "Women's Health Initiative." Paul Cotton, "Women's Health Initiative Leads Way as Research Begins to Fill Gender Gaps," Journal of the American Medical Association 267 (1992): 46970, 473, 469. The Women's Health Initiative has subsequently come under criticism. See Susan Thaul and Dana Hotra, eds., Institute of Medicine, An Assessment of the NIH Women's Health Initiative (Washington, DC: National Academy Press, 1993). In response, the NIH will reassess the trial every three years and modify it if necessary. See Sarah Glazer, "Women's Health Initiative: Is it too ambitious?" CQ Researcher 4 (18) (1994): 416. 4. On feminist ethics, see, for example, Annette C. Baier, Moral Prejudices: Essays on Ethics (Cambridge, MA: Harvard University Press, 1994); Joan C. Tronto, Moral Boundaries: A Political Argument for An Ethic of Care (New York, NY: Routledge, 1993); Rosemarie Tong, Feminine and Feminist Ethics (Belmont, CA: Wadsworth, 1993); Alison M. Jaggar, "Feminist Ethics," in Lawrence Becker with Charlotte Becker, eds., Encyclopedia of Ethics (New York, NY: Garland, 1992); Eve Browning Cole and Susan Coultrap-McQuin, eds., Exploration in Feminist Ethics (Bloomington, IN: Indiana University Press, 1992); Claudia Card, ed., Feminist Ethics (Lawrence, KS: University Press of Kansas, 1991); Sarah Lucia Hoagland, Lesbian Ethics (Palo Alto, CA: Institute of Lesbian Studies, 1989); Carol Gilligan, Janie Victoria Ward, and Jill McLean Taylor, eds., Mapping the Moral Domain: A Contribution of Women's Thinking to Psychologcal Theory and Education (Cambridge, MA: Harvard University Press, 1988); Lorraine Code, Sheila Mullett, and Christine Overall, eds., Feminist Perspectives: Philosophical Essays on Method and Morals (Toronto, Canada: University of Toronto Press, 1988); Eva Feder Kittay and Diana Meyers, eds., Women and Moral Theory (Savage, MD: Rowman & Littlefield, 1987); Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley, CA: University of California Press, 1984). The journal Hypatia is devoted to feminist philosophy and publishes much on ethics. On feminist jurisprudence, see, for example, D. Kelly Weisberg, Feminist Legal Theory: Foundations (Philadelphia, PA: Temple University Press, 1993); Mary Joe Frug, Postmodern Legal Feminism (New York, NY: Routledge, 1992); Katharine T. Bartlett and Rosanne Kennedy, Feminist Legal Theory: Readings in Law and Gender (Boulder, CO: Westview Press, 1991); Deborah L. Rhode, ed., Theoretical Perspectives on Sexual Difference (New Haven, CT: Yale University Press, 1990); Catharine A. MacKinnon, Toward a Feminist Theory of the State (Cambridge, MA: Harvard University Press, 1989); Deborah L. Rhode, Justice and Gender: Sex Discrimination and the Law (Cambridge, MA: Harvard University Press, 1989); and numerous articles. Journals devoted to law and feminism include the Berkeley Women's Law Journal, the Harvard Women's Law Journal, the Wisconsin Women's Law Journal, the Women's Rights Law Reporter, and the Yale Journal of Law and Feminism. 5. Such works frequently cited within feminist ethics and jurisprudence include Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990); Linda J. Nicholson, ed., Feminism/Postmodernism (New York, NY: Routledge, 1990); Susan Moller Okin, Justice, Gender, and the Family (New York, NY: Basic Books, 1989); Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (Boston, MA: Beacon

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Press, 1988); Seyla Benhabib and Drucilla Cornell, eds., Feminism as Critique: On the Politics of Gender (Minneapolis, MN: University of Minnesota Press, 1987); Mary Field Belenky et al., Women's Ways of Knowing: The Development of Self, Voice, and Mind (New York, NY: Basic Books, 1986); bell hooks, Feminist Theory: from margin to center (Boston, MA: South End Press, 1984); Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982). A number of feminist journals cut across disciplinary lines, including Signs: Journal of Women in Culture and Society. 6. On science, see, for example, Helen E. Longino, "Subjects, Power, and Knowledge: Description and Prescription in Feminist Philosophies of Science," in Linda Alcoff and Elizabeth Potter, eds., Feminist Epistemologies (New York, NY: Routledge, 1993), 101-20; Sandra Harding, Whose Science? Whose Knowledge? Thinking from Women's Lives (Ithaca, NY: Cornell University Press, 1991); Mary Jacobus, Evelyn Fox Keller, and Sally Shuttleworth, Body/Politics: Women and the Discourses of Science (New York, NY: Routledge, 1990); Ruth Hubbard, The Politics of Women's Biology (New Brunswick, NJ: Rutgers University Press, 1990); Helen Longino, Science as Social Knowledge: Values and Objectivity in Scientific Inquiry (Princeton, NJ: Princeton University Press, 1990); Nancy Tuana, ed., Feminism & Science (Bloomington, IN: Indiana University Press, 1989); Marsha Hanen and Kai Nielsen, eds., Science, Morality and Feminist Theory (Calgary, Canada: University of Calgary Press, 1987); Sandra Harding, The Science Question in Feminism (Ithaca, NY: Cornell University Press, 1986); Ruth Bleier, ed., Feminist Approaches to Science (New York, NY: Pergamon Press, 1986); Evelyn Fox Keller, Reflections on Gender and Science (New Haven, CT: Yale University Press, 1985); Ruth Bleier, Science and Gender: A Critique of Biology and Its Theories (New York, NY: Pergamon Press, 1984); Sandra Harding and Merrill B. Hintikka, eds., Discovering Reality: Feminist Perspectives on Epistemology, Metaphysics, Methodology, and Philosophy of Science (Dordrecht, Netherlands: D. Reidel, 1983). On medicine, the other healing professions, and healing outside the professions, see, for example, The Boston Women's Health Book Collective, The New Our Bodies, Ourselves: A Book By and For Women (New York, NY: Simon & Schuster, 1992); Evelyn C. White, ed., The Black Women's Health Book: Speaking for Ourselves (Seattle, WA: Seal Press, 1990); Rima D. Apple, Women, Health, and Medicine in America: A Historical Handbook (New Brunswick, NJ: Rutgers University Press, 1990); Charlotte F. Muller, Health Care and Gender (New York, NY: Russell Sage Foundation, 1990); Darlene Clark Hine, Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890-1950 (Bloomington, IN: Indiana University Press, 1989); Sue V. Rosser, Feminism within the Science and Health Care Professions: Overcoming Resistance (Oxford, England: Pergamon Press, 1988); Regina Markell Morantz-Sanchez, Sympathy and Science: Women Physicians in American Medicine (New York, NY: Oxford University Press, 1985); Gena Corea, The Hidden Malpractice: How American Medicine Mistreats Women (New York, NY: Harper Colophon Books, 1985); Diana Scully, Men Who Control Women's Health: The Miseducation of Obstetrician-Gynecologists (Boston, MA: Houghton-Mifflin, 1980); Elizabeth Fee, ed., Women and Health: The Politics of Sex in Medicine (Farmingdale, NY: Baywood, 1983); Janice Raymond, "Medicine as Patriarchal Religion," Journal of Medicine and Philosophy 7 (1982): 197-216; Barbara Ehrenreich and Deidre English, For Her Own Good: 150 Years of Experts' Advice to Women (Garden City, NY: Anchor Books, 1979). 7. See, for example, Janice Raymond, "Reproductive Gifts and Gift Giving: The Altruistic Woman," Hastings Center Report 20 (Nov./Dec. 1990): 7-11;


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Maura A. Ryan, "The Argument for Unlimited Procreative Liberty: A Feminist Critique," Hastings Center Report 20 (July/Aug. 1990): 6-12; Overall, Ethics and Human Reproduction; Rothman, The Tentative Pregnancy. The overlapping domain of genetics has also spawned some gender-attentive work. See, for example, Rothenberg and Thomson, eds., Women and Prenatal Testing; Dorothy C. Wertz, "Providers' Gender and Moral Reasoning: A Proposed Agenda for Research on Providers and Patients," Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 81-89 (on genetic counseling); R. Alta Charo, "Effect of the Human Genome Initiative on Women's Rights and Reproductive Decisions," Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 148-59. 8. See, for example, Joan Liaschenko, "Feminist ethics and cultural ethos: Revisiting a nursing debate," ANS: Advances in Nursing Science 15 (1993): 71-81; Sara T. Fry, "The Role of Caring in a Theory of Nursing Ethics," in Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992), 93-106 and citations therein; Martin Benjamin and Joy Curtis, Ethics in Nursing, 3d ed. (New York, NY: Oxford University Press, 1992), 96-97 & n.25; Anne J. Davis and Mila A. Aroskar, Ethical Dilemmas and Nursing Practice, 2d ed. (Norwalk, CT: AppletonCentury-Crofts, 1983). 9. See, for example, Jocelyn Downie and Susan Sherwin, "Feminist Health Care Ethics Consultation," H E C Forum 5 (1993): 165-75; Leslie Bender, "A Feminist Analysis of Physician-Assisted Dying and Voluntary Active Euthanasia," Tennessee Law Review 59 (1992): 519-46; Rebecca Dresser, "Wanted: Single, White Male for Medical Research," Hastings Center Report 22 (Jan.-Feb. 1992): 24-29; Dena S. Davis, "Rich Cases: The Ethics of Thick Description," Hastings Center Report 21 (July-Aug. 1991): 12-17; Steven H. Miles and Allison August, "Courts, Gender, and 'the Right to Die,' " Law, Medicine & Health Care 18 (1990): 85-95; Susan M. Wolf, "Nancy Beth Cruzan: In No Voice At All," Hastings Center Report 20 (Jan./Feb. 1990): 38-41; Daniel O. Dugan, "Masculine and Feminine Voices: Making Ethical Decisions in the Care of the Dying," Journal of Medical Humanities and Bioethics 8 (1987): 129-40. 10. The recent exceptions include Mary Briody Mahowald, Women and Children in Health Care: An Unequal Majority (New York, NY: Oxford University Press, 1993); Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992); and Holmes and Purdy, eds., Feminist Perspectives in Medical Ethics. The last is based on two special issues of Hypatia in 1989, "Feminist Ethics & Medicine" (Summer) and "Ethics & Reproduction" (Fall). Shorter treatments include Rebecca J. Cook, "Feminism and the Four Principles," in Raanan Gillon and Ann Lloyd, eds., Principles of Health Care Ethics (New York, NY: Wiley, 1994), 193-206; Ruth Macklin, "Women's Health: An Ethical Perspective," Journal of Law, Medicine & Ethics 21 (1993): 23-29; and Karen Lebacqz, "Feminism and Bioethics: An Overview," Second Opinion 17 (Oct. 1991): 11-25. Published prior to these articles, however, is Margaret Farley, "Feminist Theology and Bioethics," in Earl E. Shelp, ed., Theology and Bioethics: Exploring the Foundation and Frontiers (Boston, MA: D. Reidel, 1985). The fourth edition of Tom L. Beauchamp and James F. Childress's Principles of Biomedical Ethics, 4th ed. (New York, NY: Oxford University Press, 1994), 85-92 incorporates attention to feminist work for the first time. 11. See Rosemarie Tong, Feminist Thought: A Comprehensive Introduction (Boulder, CO: Westview Press, 1989) (liberal, Marxist, radical, psychoanalytic, socialist, existential, and postmodern feminism); Alison M. Jaggar, Feminist Poli-

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tics and Human Nature (Totowa, NJ: Rowman & Littlefield, 1988) (liberal, Marxist, radical, and socialist feminism). 12. For example, the first six years of the Hastings Center Report included articles by Sissela Bok, Lisa Cahill, Ren e C. Fox and Judith P. Swazey, Angela R. Holder, Karen A. Lebacqz, Carol Levine, Ruth Macklin, Dorothy Nelkin, Tabitha Powledge, Ruth Sidel (with Victor Sidel), Margaret O'Brien Steinfels, and other women, although publications by men predominated. See Institute of Science, Ethics and the Life Sciences, the hastings center Report: Index for 19711976, and Hastings Center Studies 1973-74. 13. See, for example, Annette Dula and Sara Goering, eds., "It Just Ain't Fair:" The Ethics of Health Care for African Americans (Westport, CT: Praeger, 1994); John Conyers, Jr., "Principles of Health Care Reform: An African-American Perspective," Journal of Health Care for the Poor and Underserved 4 (1993): 242-49; Harley E. Flack and Edmund D. Pellegrino, eds., African-American Perspectives on Biomedical Ethics (Washington, DC: Georgetown University Press, 1992). 14. Certainly the data cry out for race- and ethnicity-attentive analysis. See, for example, Eli Ginzberg, "Access to Health Care for Hispanics," Journal of the American Medical Association 265 (1991): 238-41, part of a special issue on Hispanic health. 15. See, for example, Mark Sagoff, "Zuckerman's Dilemma: A Plea for Environmental Ethics," Hastings Center Report 21 (Sept.-Oct. 1991): 32-40; Strachan Donnelley, "Speculative Philosophy, the Troubled Middle, and the Ethics of Animal Experimentation," Hastings Center Report 19 (Mar./Apr. 1989): 15-21. Feminist writers have also tackled environmental ethics and issues in animal use. See, for example, Special Issue on Ecological Feminism, Hypatia 6 (Spring 1991), including articles on both topics. 16. See Daniel Callahan and Courtney S. Campbell, eds., Special Supplement on "Theology, Religious Traditions, and Bioethics," Hastings Center Report 20 (July/Aug. 1990): 1-24; Richard A. McCormick, "Theology and Bioethics," Hastings Center Report 19 (Mar./Apr. 1989): 5-10; Shelp, ed., Theology and Bioethics. 17. See citations in note 8 above. 18. See, for example, Renee C. Fox, Spare Parts: Organ Replacement in American Society (New York, NY: Oxford University Press, 1992); Renee C. Fox and Judith P. Swazey, "Medical Morality is Not Bioethics: Medical Ethics in China and the United States," in Renee C. Fox, ed., Essays in Medical Sociology (New Brunswick, NJ: Transaction Books, 1988), 645-70; Barbara Koenig, "The Technological Imperative in Medical Practice: The Social Creation of 'Routine' Treatment," in Margaret Lock and Deborah R. Gordon, eds., Biomedicine Examined (Boston, MA: Kluwer Academic Publishers, 1988). 19. See, for example, Anne A. Scitovsky and Alexander M. Capron, "Medical Care at the End of Life: The Interaction of Economics and Ethics," Annual Review of Public Health 7 (1986): 71-75. 20. See, for example, the Journal of Clinical Ethics. 21. Jaggar, Feminist Politics and Human Nature, 5. 22. Sherwin, No Longer Patient, 19. 23. See, for example, note 11 supra; Marianne Hirsch and Evelyn Fox Keller, Conflicts in Feminism (New York, NY: Routledge, 1990). 24. See, for example, Judith Butler, Gender Trouble: Feminism and the Subversion of Identity (New York, NY: Routledge, 1990). 25. See Gilligan, In a Different Voice. 26. See, for example, Lawrence Blum, "Gilligan and Kohlberg: Implications for Moral Theory," Ethics 98 (1988): 472-91.


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27. See, for example, the five chapters presented under "Checking the Data" in Mary Jeanne Larrabee, ed., An Ethic of Care: Feminist and Interdisciplinary Perspectives (New York, NY: Routledge, 1993), 143-203. But see also Carol Gilligan's "Reply to Critics," in Larrabee, ed., An Ethic of Care, 207-14, reprinted from Signs. 28. For reservations about the ethics of care see, for example, Tronto, Moral Boundaries; Tong, Feminine and Feminist Ethics; Sherwin, No Longer Patient, 4257; Hilde Lindemann Nelson, "Against Caring," Journal of Clinical Ethics 3 (1992): 8-15. 29. David J. Rothman gives a history of modern bioethics in Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York, NY: Basic Books, 1991). 30. See Veronica Benson and Marie A. Marano, "Current Estimates from the National Health Interview Survey, 1993," Vital and Health Statistics, series 10 (190) (1994): 114,120; Jacqueline A. Horton, ed., The Women's Health Data Book: A Profile of Women's Health in the United States (Washington, DC: Elsevier, 1992), 93-94. 31. See Horton, ed., The Women's Health Data Book, 93, 136; Carol S. Weisman, "Communication Between Women and their Health Care Providers: Research Findings and Unanswered Questions," Public Health Reports 102 (1987 Supp.): 147-51, 147; Judith H. Hibbard and Clyde R. Pope, "Another Look at Sex Differences in the Use of Medical Care: Illness Orientation and the Types of Morbidities for which Services are Used," Women and Health 11 (Summer 1986): 21-36, 22. 32. See U.S. Bureau of the Census, Statistical Abstract of the United States: 1994, 114th ed. (Washington, DC: U.S. Government Printing Office, 1994), 121; Arnold S. Relman, "The Changing Demography of the Medical Profession," New England Journal of Medicine 321 (1989): 1540-42. 33. Paul Starr, The Social Transformation of American Medicine (New York, NY: Basic Books, 1982), 49 (footnote with citation to Joseph Kett omitted). 34. Ibid., 32-51. 35. In 1992 active nurses in the United States outnumbered active physicians by 1.85 million to 568,000 excluding federally employed persons. U.S. Bureau of the Census, Statistical Abstract of the United States: 1994, 122. 36. The majority of workers in long-term care are women. Marilyn Moon, "Women and Long-Term Care," The American Woman (1994-95): 223-50, 226. 37. See Dorothy Malone-Rising, "The Changing Face of Long-Term Care," Nursing Clinics of North America 29 (1994): 417-29, 423; Amanda S. Barusch and Wanda M. Spaid, "Gender Differences in Caregiving: Why Do Wives Report Greater Burden?" Gerontologist 29 (1989): 667-76. A survey of New York City home care workers found that 98 percent were women. Rebecca Donovan, " 'We Care for the Most Important People in Your Life:' Home Care Workers in New York City," Women's Studies Quarterly 17 (1-2) (1989): 56-65, 61. 38. See, for example, Judith M. Roy, "Surgical Gynecology," in Apple, ed., Women, Health, and Medicine in America, 173-95; Elaine Showalter, The Female Malady: Women, Madness, and English Culture, 1830-1980 (New York, NY: Penguin Books, 1985); Ehrenreich and English, For Her Own Good; Barbara Ehrenreich and Diedre English, Complaints and Disorders: The Sexual Politics of Sickness (Old Westbury, NY: Feminist Press, 1973). 39. See, for example, William Coryell, Jean Endicott, and Martin Keller, "Major Depression in a Nonclinical Sample: Demographic and Clinical Risk Factors for First Onset," Archives of General Psychiatry 49 (1992): 117-25; B. Lawrence Riggs, "Overview of Osteoporosis," Western Journal of Medicine 154 (1991):

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63-77, 63; James L. Bernat et al., "The Changing Picture in Migraine," Patient Care 22 (5) (1988): 39-48. See generally Horton, ed., The Women's Health Data Book, 56-58, 63-69. 40. See Anna C. Mastroianni, Ruth Faden, and Daniel Federman, eds., Institute of Medicine, Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Vol. I (Washington, DC: National Academy Press, 1994), 64. 41. See Robert J. Levine, Ethics and Regulation of Clinical Research, 2d ed. (New Haven, CT: Yale University Press, 1986). 42. See U.S. Bureau of the Census, Statistical Abstract of the United States: 1994, 475-78; Mahowald, Women and Children in Health Care, 217-35; Robyn I. Stone, "The Feminization of Poverty Among the Elderly," Women's Studies Quarterly 17 (1-2) (1989): 20-34; National Center for Health Statistics, Health, United States, 1992 (Hyattsville, MD: Public Health Service, 1993), 42. 43. For such analysis see, for example, Nancy S. Jecker, "Age-Based Rationing and Women," Journal of the American Medical Association 266 (1991): 3012-15, and chapter 12 in this volume. 44. See Phyllis Moen, Julie Robinson, and Vivian Fields, "Women's Work and Caregiving Roles: A Life Course Approach," Journals of Gerontology 49 (1994): S176-86; Debbie H. Ward and Patricia A. Carney, "Caregiving Women and the U.S. Welfare State: The Case of Elder Kin Care by Low-Income Women," Holistic Nursing Practice 8 (1994): 44-58. See also Muller, Health Care and Gender, 126-27. 45. On each of these developments see notes 2 and 3 supra. 46. Many of these cases can be found in texts such as Barry R. Furrow et al., Health Law: Cases, Materials and Problems, 2d ed. (St. Paul, MN: West, 1991 & Supp. 1994). 47. See Council on Ethical and Judicial Affairs, American Medical Association, "Gender Discrimination in the Medical Profession," Women's Health Issues 4 (Spring 1994): 1-11; Frances K. Conley, "Toward a More Perfect World— Eliminating Sexual Discrimination in Academic Medicine," New England Journal of Medicine 328 (1993): 351-52; Miriam Komaromy et al., "Sexual Harassment in Medical Training," New England Journal of Medicine 328 (1993): 322-26. 48. See Flora Johnson Skelly, "Poised for Flight: Women Are on the Threshold of Power in Medicine," American Medical News, September 19, 1994, pp. 14-18; Wendy Levinson, Susan W. Tolle, and Charles Lewis, "Women in Academic Medicine: Combining Career and Family," New England Journal of Medicine 321 (1989): 1511-17. 49. See, for example, Martha Minow and Elizabeth V. Spelman, "In Context," University of Southern California Law Review 63 (1990): 1597-652. 50. See, for example, Lawrence A. Blum, Moral Perception and Particularity (New York, NY: Cambridge University Press, 1994); Marilyn Friedman, "The Social Self and the Partiality Debates," in Card, ed., Feminist Ethics, 161-79; Lawrence Blum, Friendship, Altruism, and Morality (London, England: Routledge and Kegan Paul, 1980). 51. See, for example, Marilyn Friedman, "Care and Context in Moral Reasoning," in Kittay and Meyers, eds., Women and Moral Theory, 190-204. 52. Beauchamp and Childress, Principles of Biomedical Ethics, 85-92. 53. See, for example, Roger B. Dworkin, "Medical Law and Ethics in the Post-Autonomy Age," Indiana Law Journal 68 (1993): 727-42; Daniel Callahan, "Autonomy: A Moral Good, Not a Moral Obsession," Hastings Center Report 14 (Oct. 1984): 40-42.


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54. See, for example, Spelman, Inessential Woman. 55. I have written on this problem in the context of hospital ethics committees in Susan M. Wolf, "Ethics Committees and Due Process: Nesting Rights in a Community of Care," Maryland Law Review 50 (1991): 798-858. More broadly, I have written on this in Susan M. Wolf, "Toward a Theory of Process," Law, Medicine & Health Care 20 (1992): 278-90. 56. This is the usual short name for the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. An example of the commission's work is Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, Vol. One: Report (Washington, DC: U.S. Government Printing Office, 1982). 57. Among the works of this body is New York State Task Force on Life and the Law, Surrogate Parenting: Analysis and Recommendations for Public Policy (1988). 58. See Wolf, "Ethics Committees and Due Process." 59. See, for example, Carol Levine and Arthur L. Caplan, "Beyond Localism: A Proposal for a National Research Review Board," IRB: A Review of Human Subjects Research 8 (Mar./Apr. 1986): 7-9. 60. See generally Robert M. Veatch, "Clinical Ethics, Applied Ethics, and Theory," in Barry Hoffmaster, Benjamin Freedman, and Gwen Fraser, eds., Clinical Ethics: Theory and Practice (Clifton, NJ: Humana Press, 1989), 7-25, 1620; Ruth Macklin, "Consultative Roles and Responsibilities," in Ronald E. Cranford and A. Edward Doudera, eds., Institutional Ethics Committees and Health Care Decision Making (Ann Arbor, MI: Health Administration Press, 1984), 157-68, 158-59. 61. See, for example, Leon R. Kass, "Practicing Ethics: Where's the Action?" Hastings Center Report 20 (Jan.-Feb. 1990): 5-12; Peter Steinfels, "Beliefs," New York Times, October 30, 1993, sec. 1, p. 9. 62. National Center for Human Genome Research, Progress Report: Fiscal Years 1991 and 1992 (Washington, DC: U.S. Dept. of Health and Human Services, NIH Pub. No. 93-3550, Mar. 1993), 37-49. 63. I am grateful to Helen Longino for suggesting the notion of a discourse of experts. 64. On narrative ethics see, for example, Howard Brody, Stories of Sickness (New Haven, CT: Yale University Press, 1987). 65. See Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry (Berkeley, CA: University of California Press, 1988); John Arras, "Getting Down to Cases: The Revival of Casuistry in Bioethics," Journal of Medicine and Philosophy 16 (1991): 29-51. 66. See, for example, Dena S. Davis, "Rich Cases: The Ethics of Thick Description," Hastings Center Report 21 (July-Aug. 1991): 12-17. 67. Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York, NY: Vintage Books, 1975). 68. See Maria C. Lugones and Elizabeth V. Spelman, "Have We Got a Theory for You! Feminist Theory, Cultural Imperialism and the Demand for 'The Woman's Voice,' " Women's Studies International Forum 6 (1983): 573-81. 69. See Cook, "Feminism and the Four Principles;" Macklin, "Women's Health." 70. Sherwin, No Longer Patient, 179-240. 71. See Judith Herman, Father-Daughter Incest (Cambridge, MA: Harvard University Press, 1981).

42


72. See Starr, The Transformation of American Medicine, 32, 49-50; Charles E. Rosenberg, The Care of Strangers: The Rise of America's Hospital System (New York, NY: Basic Books, 1987), 342. 73. See, for example, Katz, The Silent World of Doctor and Patient, 100-01. 74. The public/private distinction has been much criticized by feminists and others for insulating the private, domestic sphere from scrutiny and the requirements of justice. See, for example, Okin, Justice, Gender, and the Family. 75. See Troyen Brennan, Just Doctoring: Medical Ethics in the Liberal State (Berkeley, CA: University of California Press, 1991). 76. See Dorothy E. Roberts, "Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right of Privacy," Harvard Law Review 104 (1991): 1419-82, 1432-36. 77. Compare U.S. Bureau of the Census, Statistical Abstract of the United States: 1994, 8, 20-21 with Centers for Disease Control, HIV / AIDS Surveillance Report (Oct. 1992): 12. 78. See Evelyn Fox Keller, Secrets of Life, Secrets of Death: Essays on Language, Gender and Science (New York, NY: Routledge, 1992), 17. 79. Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990). 80. See, for example, Daniel Wikler and Norma J. Wikler, "Turkey-baster Babies: The Demedicalization of Artificial Insemination," Milbank Quarterly 69 (Spring 1991): 5-40; Ronald Bayer, Private Acts, Social Consequences: AIDS and the Politics of Public Health (New York, NY: Free Press, 1989); Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (New York, NY: Basic Books, 1981). 81. See, for example, the special issue of Hypatia on "Lesbian Ethics" edited by Claudia Card. It includes Claudia Card, "Bibliography of Lesbian Philosophy and Selected Related Works," Hypatia 7 (Fall 1992): 212-22. See also Tong, Feminine and Feminist Ethics, 188-219. 82. See, for example, Rosser, Biology and Feminism; Hine, Black Women in White; Rosser, Feminism within the Science and Health Care Professions; Carol Gilligan and Susan Pollak, "The Vulnerable and Invulnerable Physician," in Gilligan, Ward, and Taylor, eds., Mapping the Moral Domain, 245-62; Morantz-Sanchez, Sympathy and Science; Evelyn Fox Keller, A Feeling for the Organism: The Life and Work of Barbara McClintock (New York, NY: W. H. Freeman, 1983). 83. See, for example, Lurie et al., "Preventive Care for Women: Does the Sex of the Physician Matter?" answering yes. 84. See Beauchamp and Childress, Principles of Biomedical Ethics, 102, 111. 85. See, for example, Alcoff and Potter, eds., Feminist Epistemologies. 86. Helen E. Longino, "Subjects, Power, and Knowledge: Description and Prescription in Feminist Philosophies of Science," in Alcoff and Potter, eds., Feminist Epistemologies, 101-20, 103. 87. Linda Alcoff and Elizabeth Potter, "Introduction: When Feminisms Intersect Epistemology," in ibid., 1-14, 13. 88. Longino, "Subjects, Power, and Knowledge," 112-13. 89. See, for example, Jerry Goldman and Martin D. Katz, "Inconsistency and Institutional Review Boards," Journal of the American Medical Association 248 (1982): 197-202. 90. See Ellen Fox and Carol Stocking, "Ethics Consultants' Recommendations for Life-Prolonging Treatment of Patients in a Persistent Vegetative State," Journal of the American Medical Association 270 (1993): 2578-82. 91. See, for example, Harding, The Science Question in Feminism.


43

92. See Cook, "Feminism and the Four Principles;" Macklin, "Women's Health." 93. See Jennifer Nedelsky, "Reconceiving Autonomy: Sources, Thoughts and Possibilities," Yale Journal of Law and Feminism 1 (1989): 7-36; Minow, Making All the Difference; Young, Justice and the Politics of Difference; Okin, Justice, Gender, and the Family. 94. See, for example, Blum, Moral Perception and Particularity; Seyla Benhabib, Situating the Self: Gender, Community and Postmodernism in Contemporary Ethics (New York, NY: Routledge, 1992); Iris Murdoch, The Sovereignty of the Good (London, England: Routledge & Kegan Paul, 1970). 95. Iris Marion Young usefully separates these two in Justice and the Politics of Difference. 96. See Daniel Callahan, Setting Limits: Medical Goals in an Aging Society (New York, NY: Simon and Schuster, 1987); Norman Daniels, Just Health Care (New York, NY: Cambridge University Press, 1985).


I THE RELATIONSHIP OF FEMINISM AND BIOETHICS


1 Feminism and Bioethics Susan Sherwin

About Feminism The class of people who consider themselves feminists is large and diverse, representing a broad range of different opinions and perspectives.1 Despite this rich multiplicity of views, it is possible to identify some common themes. Generally, feminists share a recognition that women are oppressed in our society and an understanding that their oppression takes many different forms, compounded often by other forms of oppression based on features such as race, ethnicity, sexual orientation, and economic class. Because feminists believe that oppression is objectionable on both moral and political grounds, most are committed to transforming society in ways that will ensure the elimination of oppression in all its forms.2 Much of the harm of sexism is obvious and thus can be readily challenged. For example, the evidence is overwhelming that women are disproportionately subjected to domestic violence and sexual assault, resulting in undeniable physical and psychological damage to many women and a sense of insecurity and vulnerability in all women.3 In addition, the economic disadvantage women experience in the work place, where their average earnings are less than two-thirds of the average wages paid to men,4 is widely condemned as unjust. Further, the predominance of men, especially white, middle-class men, in positions of influence in virtually all segments of society (legal, political, financial, cultural, and military) is inescapable.

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The Relationship of Feminism and Bioethics

Other dimensions of sexism are more subtle, however, and can easily be overlooked unless one makes a conscious effort to identify them. For example, the implicit male bias of ordinary language, such as the tendency to confuse explicitly gendered male forms of expression with supposedly gender-neutral generic forms (such as "chairman," "manpower," and even "mankind"), perpetuates culturally embedded notions of male-defined norms and assumptions of female deviance. The difference in adjectives customarily used to describe men and women (for instance, behavior that is called forceful or aggressive in men is likely to be described as strident or hysterical in women) reflects a rigid, dichotomized view of the world in which gender stereotyping is systematically reinforced. In a different dimension, the prevalence of sexual harassment of women by men and the fact that many people often have difficulty in distinguishing it from ordinary male sexual aggression are evidence of the unbalanced power relations in our society. As well, the degree to which the work and ideas of men dominate the curricula in our schools and universities reveals a culturally widespread dismissal of the accomplishments of women. Feminists have learned that women are devalued and endangered in many complex ways. They understand that unconscious sexism is at least as common and dangerous as the conscious variety. The roots of sexism are intertwined and deeply embedded in the fabric of our culture. Hence, sexism is unlikely to be eradicated without extensive investigation of the various institutions that shape society. Feminists pursue numerous strategies to identify and uproot the many forms of sexism, including the project of examining the effects of diverse social practices and institutions on the established patterns of oppression in society. They try to evaluate the overall influence of each social practice or institution to determine whether the practice in question helps to perpetuate the dominance of one group over another, is neutral with respect to oppression, or helps to undermine the existing oppressive forces. When feminists have approached the established academic disciplines with this question in mind, they have found that there are ways in which almost all have helped to maintain existing dominance structures. Most disciplines have/for example, largely ignored or silenced the voices of women and other oppressed groups and have pursued projects that are supportive of oppressive patterns. Feminist critiques of the life, physical, and social sciences find a pervasive anti-female bias in the conceptions and practices of each.5 In addition, feminist scholars who have examined the particular disciplines categorized under the heading of the "humanities" have found each to be maledominated and supportive of social structures that are oppressive to

Feminism and Bioethics

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women.6 To date, though, bioethics has largely escaped such feminist scrutiny.7 For the most part, bioethicists proceed as if bioethics is simply neutral in its effects on oppression, pursuing questions that seem to be separate from those that occupy feminists. With the exception of a few topics that clearly affect women differently from men (particularly abortion and the new reproductive technologies), most bioethicists assume that their work has no impact on questions of gender oppression. Of course, many bioethicists personally oppose sexism and are motivated to try to reverse some of its effects; many make conscious efforts to use gender-neutral language and to challenge traditional gender stereotypes in their examples and case studies, such as by using female pronouns to refer to doctors. These bioethicists likely think of themselves as involved in an activity that helps to undermine some of the subtle effects of sexism. But even among these sympathetic bioethicists, gender is seldom raised as a relevant consideration in the topics explored, or viewed as significant in the contexts addressed. Feminists, however, are unlikely to be comforted by these omissions, having learned elsewhere that invisibility is no assurance of irrelevance in matters of oppression. The question of whether bioethics has a positive, negative, or neutral effect on existing patterns of oppression becomes especially troublesome when we recognize that philosophy, theology, medicine, and law—the disciplines from which bioethics draws most of its practices and practitioners—have all been shown to be deeply infected with patriarchal values and assumptions. Of particular concern to bioethicists is the fact that several recent feminist critiques suggest that rather than being an instrument for challenging oppression, ethics as it is usually pursued may actually be supportive of the oppressive status quo.8 Thus, when feminists approach the field of bioethics they have reason to consider carefully what role this newly defined discipline plays in the existing structures of oppression. In this essay, I shall outline some of my explicitly feminist concerns about bioethics and offer some suggestions as to how bioethical practices might be changed to be more compatible with the moral objectives of feminism.

Feminist Ethics Although many bioethicists balk at the label "applied ethics" and resist the suggestion that their work consists simply of some mechanical application of abstract ethical principles, virtually all believe that a clear understanding of the central principles, values, and debates within the field of philosophical or religious ethics is essential to adequate analysis

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of the issues that arise in the domain of bioethics. Also, despite the commonplace grumbling among bioethicists about the impracticality of theoretical ethics, most bioethical arguments reflect a belief that the insights of theoretical ethics can be effectively supplemented and modified in the light of actual experience and circumstances. In addition, many of the debates and disagreements that occupy theoretical ethicists carry over to bioethics. Bioethicists are divided, for instance, about whether the central criteria of ethical analysis are best captured by a finite set of principles or by a broader, more open-ended range of values. They also worry about such classical questions as whether moral claims can be said to be ultimately true or false in any meaningful sense, whether happiness or freedom should be seen as the more fundamental value, and whether ethics should focus on establishing norms for action or for character. Finally, most bioethicists are highly dependent on the work of their colleagues in the realm of theoretical ethics in spelling out the meaning of many key concepts they rely on, especially "autonomy," "welfare," and "justice." Thus, it is appropriate to begin a feminist evaluation of bioethics by reviewing some of the criticisms that feminist theorists have brought to bear on the dominant theories of traditional ethics. Several feminist critics take their lead from Carol Gilligan's proposal that there exist two distinct patterns of moral decision making.9 They note that most ethical theory reflects only one of the two important approaches to ethical deliberation that Gilligan found practiced in our culture. Traditional ethics is rooted in the approach Gilligan characterized as the ethic of justice, an ethic defined by its commitment to abstract, universal principles. The alternative approach, which she identified as an ethic of care or responsibility, involves a form of person-specific caring in which contextual details take prominence.10 The ethic of care differs from the ethic of justice in that it is particular and concrete and it directs agents to place a premium on the avoidance of hurting people. It does not pursue general rules independently of their specific effects, and it permits the modification of existing circumstances or rules when that is necessary to circumvent painful choices. While the ethic of justice focuses on persons only generically and abstractly, the ethic of care is occupied with actual persons and the particularities of their circumstances. An ethic of care is readily adaptable to bioethics, where the importance of considering the particular needs of patients and attending to health professionals' special relationship toward them is already well entrenched in moral deliberations. In her empirical studies, Gilligan found that women were far more likely than men to adopt an ethic of care, and men were more likely than women to adopt an ethic of justice, but she believed that moral agents should be skilled in pursuing both kinds of ethics, since each is


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appropriate to specific sorts of problems. Many feminists have observed that most male-defined ethical theories (including virtually all of traditional philosophical ethics) address only the concerns of an ethic of justice.11 Moreover, most of the familiar ethical theories either dismiss women from consideration altogether or assign to them a subordinate role. For obvious reasons, feminists consider it important to develop a moral theory that speaks to women in ways that do not reflect the dominant group's interests in perpetuating their subordination. Therefore, many feminists welcome the fact that Gilligan offers recognition and validity for the sort of moral reasoning that is commonly associated with women.12 Most feminists also appreciate her recognition that more than one legitimate approach to ethical reasoning is possible. There is no obvious justification for restricting the definition of "ethics" to the sort of deliberation that is most commonly practiced by men. Many feminists are, however, wary of uncritically valorizing apparently female approaches to moral reasoning and have expressed reservations about establishing too quickly a caring-based conception of feminist ethics. They recognize the dangers inherent in accepting or legitimating gender patterns that have been established within a sexist society. Therefore, some feminists have argued that if we are to recommend a place for caring in ethics, we do so only in conjunction with a political evaluation of the role of caring in our moral deliberations, and others have rejected caring outright as the central element of feminist ethics.13 In light of the dangers and complications that have been associated with attempts to endorse stereotypically feminine patterns as the basis of ethics, I do not believe it is appropriate to characterize the ethics of care as specifically feminist. It does not capture the dimensions that I regard as distinctively feminist. Nevertheless, 'I do share with many other feminist ethicists an appreciation of Gilligan's emphasis on the importance of attention to concrete narrative details in moral decision making.14 Interestingly, many bioethicists also agree about the value of the concrete. They understand that contextual details are morally relevant to ethical evaluation and that purely abstract considerations are often inadequate for resolving moral concerns.15 The question that must be considered, then, is what sorts of contextual details are to be deemed relevant for moral judgments; feminists and bioethicists often differ significantly on this point. I believe feminism's answer derives from its understanding that oppression is a pervasive and insidious moral wrong, and that conscious attention must be directed to its place in the practices that are being ethically evaluated. Therefore, from a feminist perspective, the relevant concrete details to be considered in our ethical deliberations include

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the political or power relations of the persons who are involved in or who are affected by the practice or policy being evaluated. Questions about dominance and oppression are essential dimensions of feminist ethical analysis. Thus, when approaching moral dilemmas in feminist ethics, and by extension in feminist bioethics, it is important to understand the actual particulars of the encompassing dominance structures. In other words, feminist ethics proposes that when we engage in moral deliberation, it is not sufficient just to calculate utilities or to follow a set of moral principles. We must also ask whose happiness is increased, or how the principles in question affect those who are now oppressed in the circumstances at hand. Practices that increase the happiness or protect the rights of the dominant group at the expense of an oppressed group cannot count as morally acceptable. Positive moral value attaches to actions or principles that help relieve oppression, and negative value attaches to those that fail to reduce oppression or actually help to strengthen it. Therefore, when we ethically evaluate a practice, whether it is contractual pregnancy or abortion, or even euthanasia or truth-telling, it is important that our analysis attend to the effects of the practice on existing patterns of oppression. There are further aspects of feminist ethics that should be carried over into bioethics, including feminist challenges to some of the key concepts of traditional ethics. For example, feminists have questioned the usefulness of the concept of the abstract individual as the fundamental social and moral unit. They have argued that this concept masks particular details about persons that are often relevant to ethical evaluations, such as each individual's actual social and political location.16 Feminism teaches that moral theories are partial and defective when they speak of the interests, values, and rational choices of individuals as abstract entities, as if the personal histories and social contexts of persons are irrelevant. Feminists are very aware that persons are not all situated so as to be independent and equal; many are disadvantaged, dependent, exploited, responsible for the care of others, or otherwise limited in their ability to assert their rights in competition with the claims of other persons. Feminists recognize that these characteristics are of moral significance. For related reasons, some feminists object to the privileging that is customarily afforded to the concept of autonomy.17 Although "autonomy" is a term whose meaning is notoriously hard to fix, it retains a place of prominence in most bioethical writings. In most autonomybased discussions, individuals are envisioned as being fundamentally independent and self-directed, at least ideally. They are seen as somehow prior to and independent of their social circumstances. Many feminists, however, are critical of moral theory's usual treatment of persons as autonomous self-asserters.18 As Annette Baier has stressed,


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persons do not emerge fully grown and complete into the world, ready to perform actions and form social contracts as autonomous, selfsufficient beings.19 Rather, she suggests, persons are better described as "second persons," the product of the physical and emotional labor of other persons who socialize them. In asserting the theoretical primacy of the individual, autonomybased theories characterize social and moral obligations as essentially secondary to considerations of self-interest. They treat communities and the ties that bind them as a problem that must be accounted for, while proceeding as if the concept of an individual apart from community were coherent. And they ignore the fact that our sense of ourselves and our preferences is very much a product of our social history and current circumstances. In addition, many feminists perceive that the concept of autonomy, rather than working to empower the oppressed and exploited among us, in practice often serves to protect the privileges of the most powerful.20 It is taken as an analytic truth among political theorists that individual autonomy cannot be fully reconciled with the needs of the community. Indeed, autonomy provides the most convincing rationale for resisting the intrusion of claims of equality on the privileges of advantaged individuals. Yet greater equality is a precondition for any meaningful exercise of autonomy by seriously disadvantaged members of society. Therefore, theories that place priority on autonomy—at least as the concept is commonly interpreted—must be understood as primarily protecting the autonomy of those who are already well situated, while sacrificing the necessary prerequisites for autonomy for others. The concept of autonomy is also exclusionary, in that it is generally ascribed only to those persons who are recognized as rational. As Genevieve Lloyd and others have shown, however, rationality has historically been constructed in ways that exclude not only children, but also women and members of other oppressed groups.21 Those who are declared or perceived to be nonrational are simply beyond the scope and protection of autonomy talk. Many feminists favor a more community-based conception of the self as the basis for moral value than what is assumed in traditional ethical theorizing. They seek a conception of self in which individuals strive to determine norms for themselves within their communities.22 In feminist theories, it is usually explicitly acknowledged and made a subject of direct moral interest that all persons do not have equal power or opportunity to do so. Feminist ethicists also raise problems about traditional treatments of the concept of justice. A basic idea of justice is fundamental to feminist arguments, but the actual definition of the concept requires careful feminist attention. Susan Moller Okin, for instance, has shown how

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Rawlsian proposals to develop the principles of justice in abstraction from the real details of political life are inadequate.23 She demonstrates that it has been all too easy for privileged white males to fail to account for the demands of child care in the hypothetical conception of Rawls's "original position." Thus, gender-based differences in the demands of reproduction are not even considered in most social contract theories. Philosophers have traditionally presumed that justice belongs wholly in the public realm, and have paid no attention at all to the injustice that characterizes the private lives of most families. Feminists are very much aware that domestic injustice is a serious problem, and indeed that this injustice is generally carried over into the public realm. Failure to acknowledge gender injustice in the family permits it to be perpetuated and extended. Pursuing a somewhat different tack, Iris Marion Young has argued persuasively that philosophical conceptions of justice have been too heavily preoccupied with the distributive model.24 They have ignored the question of whether the system within which goods are to be distributed is itself oppressive. She has proposed an alternate conception of justice in which considerations of dominance relations are made central to our investigations. Feminism suggests that any appeals to justice that are made in bioethics should rely on just such a conception of justice, that is, one explicitly sensitive to the injustice of oppression in its various concrete forms. Thus, feminist critiques of both the methodology and tools of ethics suggest that an underlying gender bias is implicit in the existing ethical theories. Insofar as bioethics is built on the foundations offered by various ethical theories, its own validity and credibility are also suspect. We must, then, be careful in developing bioethics to try to ensure that we do not build into our theoretical framework the sorts of assumptions that may foster continued oppression under the legitimizing label of "ethics."

Global versus Local Critiques Distinctively feminist bioethics is just beginning to emerge as a defined approach. A principal characteristic of feminist bioethics is the critical interest it takes in the oppressive aspects of medical organization and practice. Feminist historians and sociologists of medicine have collected a great deal of data showing that medical authority has frequently been invoked to support discriminatory programs against women and to deny women's credibility in both medical and nonmedical contexts.25 In fact, a vast feminist literature exists on the role of medicine in the oppression of women and its contributions to the multiple oppression of minority and poor women.26 Nonfeminist bioethicists have, how-


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ever, shown little interest in this evidence and have not made it a matter for serious ethical evaluation. Feminist bioethicists have strong motivation to investigate and interpret these findings. Feminists object, for example, to the fact that over time physicians have succeeded in medicalizing and thereby seizing control over all aspects of women's reproductive lives, from menstruation and contraception, through pregnancy and delivery, to lactation and menopause.27 They recognize that the effect of this monopoly is to thwart woman-directed health services and to discredit and drive out alternative forms of care that women historically offered in their roles as midwives and homeopathic healers. Another effect is to alter women's attitudes toward their own bodies, transforming them into objects to be constantly monitored and regulated, rather than experienced directly as aspects of the self.28 Feminists also object to the gender stereotypes portraying women as immature, ignorant, nervous, and dependent that permeate medicine and influence physicians' unconscious attitudes in their dealings with women patients. Despite well-documented evidence of deeply entrenched patterns of questionable medical behavior, most bioethicists choose to define their role locally: they evaluate or criticize very specific aspects of health care practices and refrain from analyzing the overall social effects of the organization of health care in society. They present their examination of particular features of health practitioner behavior within an implicit acceptance of the basic organization of health services, avoiding the sorts of evaluations of the health care system as a whole that feminist and other social critics present.29 When we admit investigations of broad, structural questions into the domain of bioethics, as feminism encourages us to do, we can start to pursue such important concerns as the legitimacy of the hierarchical organization of the health care system. The existing structure concentrates power in the hands of a privileged white, male elite, while relying on the obedient service of a vast body of subordinate female (mostly white) nursing staff who, in turn, retain authority over a large, mostly minority, nonprofessional support staff.30 Not only is this structure and distribution of roles inherently unfair, it also bears on medicine's own contribution to existing oppressive social structures. For instance, the health problems that attain prominence within research and treatment are largely the sorts of health risks that threaten privileged white males.31 Medical research and resources are directed at treating and reducing the risks of diseases such as heart disease, cancer, and strokes, but are not so easily available for many of the conditions that sap the strength and energy from black and native populations.32 As well, many of the efforts in the area of new reproductive technologies have been directed at developing means that allow affluent men to

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father genetically related children by applying risky technology to women; fewer resources have been directed at identifying strategies that would protect women's reproductive health and reduce the incidence of infertility in people from all economic classes.33 Moreover, much of the discussion in bioethics on the allocation of health care resources has proceeded on the assumption that such resources are a good to be maximized. But feminists join with other social critics in questioning this premise. Health care often carries iatrogenic effects in its wake; clearly, it does not always benefit its recipients, and more is not always better. In addition, patients receiving health care are often encouraged to place more trust in health care providers than is merited. Further, if the goal is to improve the health of the population and to ensure that good health is more fairly distributed, concentration on the distribution of health care services is probably not the most effective means of achieving it. Health is a product not only of health care, but also of social and economic position, and protection from violent attack and environmental toxins. Homelessness, addictions, violence, and lack of adequate food and clothing are increasing problems in the United States and they carry with them extraordinary costs in terms of illness and death. Yet while highly expensive technological health care services are being expanded to meet the needs of the privileged, resources to meet basic human needs for the most disadvantaged segments of the population are being withdrawn. Even in Canada, which has a more equitable system than the United States for allocating health care resources, basic human needs for food, shelter, and safety—all of which are essential to health—may not be adequately met. While physicians, health administrators, and bioethicists occupy themselves with questions about who should get the last bed in the ICU or a new experimental drug for AIDS, they allow themselves to be distracted from the health pleas of those who have different, but equally urgent needs. Feminist bioethics identifies reasons to question the priorities of society in setting policies that view medical services as the measure of its responsibility to the health needs of its population. Feminism directs us to examine the role of medicine in our society and to ask why it has assumed dominance in health matters.

Rethinking Topics in Bioethics Although broadly based evaluations of the health care system are a major dimension of feminist bioethics, they are not the whole story. It is also important to evaluate specific health care practices and policies from a feminist perspective. Most of the work in bioethics to date has been carried out by nonfeminists who have failed to observe or object


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to the sexism that surrounds them. Hence, most have not explored the significance of gender in the practices they examine. They have assumed that they can investigate moral questions about patient care as if patients were interchangeable—as if the gender, race, and class of patients were irrelevant. Only in matters of reproduction has gender been acknowledged as a significant variable, and often, not even there. Feminist approaches to bioethics, in contrast, demand that we attend to the role that gender and other categories of oppression play in each of the various practices examined. When the traditional issues of bioethics are explored from the perspective of feminism, the familiar questions of bioethics are raised, but so too are additional questions. Feminist bioethics requires us to consider how each practice contributes to the existing power relations in society. Therefore, when we examine such practices as confidentiality, paternalism, or the termination of life-sustaining treatment, we should ask how this practice fits into the general patterns of oppression in our society.34 For example, feminism argues that we should not discuss abortion purely in terms of the interests or rights of fetuses without observing that fetuses are universally housed in women's bodies. Similarly, discussions of the institutionalization of patients diagnosed as mentally ill should take into account that women may be especially vulnerable to such policies, since they are diagnosed as mentally ill more often than men, perhaps because they are subject to incoherent standards of mental health.35 And debate about meeting the health needs of the poor should take into account that almost 80 percent of the poor in the United States are women and children, and a disproportionate number are members of racial minorities.36 Policies in all of these areas are likely to have serious effects on the lives and status of many women. Consider, too, the many discussions in the bioethics literature of the patient-physician relationship. Feminist discussions of this topic would surely share many of the oft-cited concerns about paternalism in medical contexts. Yet in addition, a feminist perspective would encourage us to analyze the social and political consequences of paternalism in light of the fact that the majority of physicians are male and the majority of patients are female.37 In that context, paternalism builds on and reinforces gender differentials in power and authority. Feminists might also point out that this problem arises within a culture that regularly grants authoritarian power on the basis of scientific expertise, while dismissing experiential, subjective knowledge; not coincidentally, scientific knowledge is generally considered "masculine," while subjective and experiential knowledge is often associated with the "feminine."38 Medicine actively encourages deferential respect to its own particular forms of knowledge and training, in a society that un-

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dermines the claims of many women to other forms of knowledge and authority. Further, many feminists are inclined to think of persons as beings in a community, rather than as entirely independent individuals. Such thinking encourages us to perceive both patient and practitioner as embedded in complex social and political contexts, instead of treating them as an isolated dyad. Although feminists will thus join many other bioethicists in opposing paternalism, they have some unique reasons for their position. Furthermore, in contrast to their nonfeminist colleagues in bioethics, feminists are less likely to turn to the traditional alternative of autonomy as the preferred solution. In addition to the problems with autonomy already cited, there is the further difficulty that people who are oppressed face systemic barriers to their freedom, so the choices they are offered in medical contexts are likely to be seriously restricted by the limited choices available to them in their lives generally. It is deceptive to suggest that we are protecting autonomy when we allow patients to choose between unhappy alternatives, and the choice is already severely limited. To speak of autonomy in the narrow context of individual decision making, within an alien environment that is unresponsive to the patient's basic values and interests, is to distort the reality of her dilemma. Although feminists challenge the dominance and paternalism that often structure patient-physician interactions and seek means to grant greater authority to patients, many see reason to reformulate the problem rather than simply accept a dichotomy that presents autonomy as the only alternative to paternalism. Richer conceptions and more careful analysis are required, instead of ritually translating objections to paternalism into the politically loaded terminology of autonomy theory. It is therefore important that we enrich our vision of possible ways to conceive of relationships, before choosing the norms for medical interactions. Feminist bioethicists might investigate some of the alternative models that feminist theorists have proposed for ethics, such as the relationship between mothers and their children, or the sort of relationship that exists between friends, as alternatives to the more common father—child model of paternalism.39 We might also explore the relationships that can occur between teachers and students or between midwives and their clients, rather than accepting the vendor-consumer model that is so often generated by autonomy metaphors. Other familiar topics in bioethics also take on new dimensions when evaluated from the perspective of feminism. Consideration of the treatment owed to the elderly and discussions about withholding some treatments by age to conserve limited resources should be sensitive to the facts that women make up a significant majority of the elderly and that women beyond childbearing age are consistently devalued in our


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society.40 Discussions that encourage controlling costs by caring for more patients at home rather than in the hospital must acknowledge that at-home care is almost always provided by women and generally imposes a very large burden on caregivers. And when bioethicists address the ethics of research with human subjects, they should keep in mind that in addition to illness, youth, mental incapacity, and institutionalization, oppression is a factor that makes people vulnerable to exploitation, abuse, or neglect in research protocols. Feminism also expands the agenda of topics to be addressed in bioethics. For example, cosmetic surgery is becoming an increasingly common surgical procedure; it constitutes a multibillion dollar industry and it is directed, overwhelmingly, at female clients.41 It is virtually unregulated, and often poses significant risk to clients who invest years of savings for these dangerous procedures, motivated by a culture that demands female bodies and faces to conform to a limited range of stereotypes. This practice clearly poses some substantial moral questions. Yet there is no mention of the ethical problems associated with this widespread practice in the nonfeminist bioethics literature. Feminists have begun to turn their attention to this topic and have discovered that the traditional bioethical categories and concerns do not begin to encompass the issues posed by this well-entrenched practice.42 Feminism also encourages us to investigate the now emerging evidence of significant patterns of sexual abuse and sexual harassment experienced by many female patients in their encounters with physicians. While most nonfeminist bioethicists are willing to condemn such practices as unethical, few have shared with feminists a sense of urgency in trying to determine what features of the patient-physician relationship make it especially vulnerable to such abuses of power.43 It seems that a feminist analysis of sexual harassment and abuse is necessary if we hope not only to condemn such features of medical encounters, but actually to eradicate them.

The Makeup of the Bioethics Field The prevailing silence about feminist concerns in much of the existing literature of bioethics may well be a product of the patterns of representation and influence within the field. So this, too, should be a subject for feminist examination. Clearly, bioethics is a discipline that includes women's voices; most of its leading journals and institutes include a significant female presence, even if women are often still in the minority.44 Nevertheless, most of the best known, most frequently cited (and invited) bioethicists are male. This indicates that here, too, the views of male contributors receive more attention and respect than do those of women. Also, participants and especially speakers at most

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bioethics conferences are almost exclusively white, middle-class, and (relatively) healthy.45 In other words, bioethics is a discipline that is structured much like most other academic and professional organizations; its agenda and methodology have been largely defined by a white, middle-class, male elite with minority input from their female counterparts (like myself). Although we cannot conclude from this fact alone that bioethics is biased, we ought to be suspicious about the fact that the population of bioethicists diverges so greatly from the makeup of the population at large. Such imbalance is potentially dangerous because it restricts the perspectives from which problems in the field are identified and analyzed. Bioethicists interested in resisting oppression should ask themselves why the field seems to be so inhospitable to the voices of people who experience oppression and what changes might bring a more representative group into the dialogue. Are oppressed people being consciously or unconsciously ignored, or do many oppressed people refrain from participation because they find the questions that bioethicists pursue to be largely irrelevant to their central concerns? Either reason would be grounds for concern and change. Homogeneity among participants in debates has consequences in any field. One important effect is that it allows most practitioners to remain oblivious to the significance of their own location and perspective for their work. As in other disciplines that are dominated by a well-educated, white, male elite, the fact that most of their colleagues share the same perspective makes it easy for bioethicists to lapse into false generalizations from their own experience. It is all too easy to mistake oneself for a neutral "ideal observer" when no one is present to point out the specificity of one's actual stance by countering with direct experience from a different vantage point. In exploring ethical dilemmas that arise in the area of health care, bioethicists most often assume the perspective of physicians in their analyses, focusing their work on the questions that arise in the course of practicing medicine. The moral deliberations of nurses and other health professionals, such as social workers, dieticians, and physiotherapists are also addressed, but not nearly as frequently. It is rare, however, to find bioethicists taking an interest in the moral dilemmas that confront patients and their family caregivers—for example, when and how to obtain reliable advice if they do not feel well served by their current providers, how to make their own treatment decisions, or how truthful to be to the physician. And there are virtually no discussions of the dilemmas that may confront nonprofessionals who work in the health care system. A principal reason for this bias in focus is that physicians retain most of the power and are responsible for much of the difficult decision making in health care. A second reason, how-


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ever, may be that bioethicists closely match physicians in their socioeconomic, educational, racial, and gender makeup and so identify most readily with physicians' concerns. Moreover, the relatively privileged social status of most bioethicists may distort the agenda of the discipline in additional ways. For example, it probably accounts for the centrality of questions of consent in the bioethics literature. As individuals, most bioethicists are accustomed to being treated with dignity and respect and having control over matters concerning their own lives and well-being. Because illness is likely to be perceived as posing a serious threat to the exercise of their usual control, maintaining that control under the unfamiliar and frightening condition of illness-induced vulnerability is seen as an important objective. From the perspective of less privileged health care consumers who normally have little control over their lives, however, maintaining control when ill may not be of paramount concern, since control is not theirs to lose. Patients who are not used to being cared for or respected in the rest of their lives may have a different ordering of values and different priorities in their dealings with health professionals than do those who now occupy center stage in the bioethics arena.46 Some severely oppressed and socially marginalized people have absorbed the social message that their devalued status is a reflection of their lack of worth, or at least they perceive that many of the people with power and authority believe as much. As a result, they may see no reason even to bring their problems to health professionals, who may too often respond with barely disguised contempt. For them, the fundamental question of when and how to risk seeking health care services at all may be an urgent question. Many of society's marginalized peoples distrust the medical establishment far more than do concerned bioethicists, and so their moral critiques would likely be far more radical than what is usually found in the literature. The moral demands of those speaking from the position of extreme oppression might begin with a requirement for more responsiveness on the part of health practitioners to the distinct health needs of oppressed groups.47 A more diverse population of bioethicists might also lead to a different and more intensive discussion of the question of how "health care services" should be defined. There might be greater interest in really grappling with prominent health concerns of the underclass. Those concerns would include poor nutrition, inadequate shelter, unsafe work and living conditions, abuse, addictions, and lack of prenatal services. Many feminists believe that the way ethics is done has a great deal to do with the context in which it is carried out, and that both context and method affect the results produced.48 Bioethicists need to keep in mind

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the important sociological truth that the ability to recognize certain moral problems, to understand the position of those holding divergent views, and to respond to conflicting values is inevitably influenced by one's own values and experiences. Carrying out discussions and analysis with a more heterogeneous collection of colleagues would enhance those abilities. It would also provide more opportunities to learn of the values and experiences of those with different perspectives.49

Further Directions Finally, it is important to stress that feminism is interested not solely in identifying and analyzing oppression. Its principal concern is finding ways of reducing and, ultimately, eliminating oppression. Toward this end, feminists seek greater understanding of how women and other oppressed persons can escape the harms of oppression and empower themselves despite the constraining structures they face. Thus feminists focus on ways in which patients and subordinate workers in the health care field can transform their positions of vulnerability, and become more engaged in the deliberations that shape their lives. Feminists are, therefore, especially eager to shift the focus of bioethics from the perspective of physicians to that of patients, to consider how patients can exercise agency in the circumstances of illness and institutionalization. Feminism encourages us to develop and investigate new models for restructuring the power relations associated with healing, such as by distributing specialized knowledge on health matters in ways that allow individuals greater control over their own health. Thus many feminists speak of the need to help patients educate themselves about health care decisions; they recognize the importance of developing supportive structures in which patients can investigate the consequences of their choices.50 More generally, feminism raises the question of how we might try to change society's organization and thinking about health and health care in order to allow patients a more active role in defining and pursuing their own conceptions of health. Any bioethics that shares in this agenda, and understands the barriers that oppressive practices and institutions create on the basis of gender and other categories, might well describe itself as feminist.

Notes 1. There are so many different definitions of feminism to choose from, each suggesting its own particular approach to theory and practice, that many writers have taken to speaking of feminisms in the plural to avoid the suggestion that their own view represents any monolithic, unified single theory. While it


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is often important to distinguish between different conceptions of feminism, I believe it is still possible and appropriate to speak, as I do here, of a generic version of feminism, loosely defined to incorporate as much as possible of the diverse work that has been produced under the heading "feminism." 2. Various feminist accounts of oppression exist. The one offered by Iris Marion Young in Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990) is especially well spelled out and helpful. 3. Figures on the extent of domestic violence and sexual assault women experience in many countries are reported in Robin Morgan, ed., Sisterhood is Global: The International Women's Movement Anthology (Harmondsworth, England: Penguin Books, 1984). See also Joni Seager and Ann Olson, Women in the World: An International Atlas (London, England: Pan Books, 1986), 3. 4. These figures apply in North America. In many other parts of the world the wage gap is even worse. See Seager and Olson, Women in the World, 19. 5. For a bibliography of this literature, see Alison Wylie, Kathleen Okruhlik, Sandra Morton, and Leslie Thielen-Wilson, "Philosophical Feminism: A Bibliographic Guide to Critiques of Science," Resources for Feminist Research/Documentation sur la Recherche Feministe (RFR/DRF) 19 (1990): 2-36. 6. See, for example, Susan Aiken, Karen Anderson, Myra Dinnerstein, Judy Note Lensink, and Patricia MacCorquodale, eds., Changing Our Minds: Feminist Transformations of Knowledge (Albany, NY: State University of New York Press, 1988). 7. Feminists have not entirely ignored bioethics, however. One notable example is the journal Hypatia, which devoted two issues to feminist ethics and medicine, Hypatia 4, nos. 2 and 3 (1989). These were subsequently published as Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992). 8. For example, see Marsha Hanen and Kai Nielsen, eds., Science, Morality and Feminist Theory, Canadian Journal of Philosophy supp. vol. 13 (1987); Eva Feder Kittay and Diana T. Meyers, eds., Women and Moral Theory (Totowa, NJ: Rowman & Littlefield, 1987); Sarah Lucia Hoagland, Lesbian Ethics: Toward New Value (Palo Alto, CA: Institute of Lesbian Studies, 1988); and Claudia Card, ed., Feminist Ethics (Lawrence, KS: University Press of Kansas, 1991). 9. Carol Gilligan, In a Different Voice: Psychological Theory and Women's Moral Development (Cambridge, MA: Harvard University Press, 1982). 10. An example of such an ethic is provided by Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley, CA: University of California Press, 1984). 11. See, for example, the Introduction in Kittay and Meyers, eds., Women and Moral Theory, 3-16. 12. Many male theorists, such as Aristotle and Freud, also observed women's inclination to pursue particularity when faced with moral problems, but, unlike Gilligan, they considered this tendency to be a serious moral deficiency in women. 13. See, for example, Barbara Houston, "Rescuing Womanly Virtues: Some Dangers of Moral Reclamation," in Hanen and Nielsen, eds., Science, Morality and Feminist Theory, 237-62; Hoagland, Lesbian Ethics; Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992). 14. See, for example, Seyla Benhabib, "The Generalized and The Concrete Other: The Kohlberg-Gilligan Controversy and Moral Theory," in Kittay and Meyers, eds., Women and Moral Theory, 154-77.

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15. See, for example, Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning (Berkeley, CA: University of California Press, 1988); Arthur Caplan, "Ethical Engineers Need Not Apply: The State of Applied Ethics Today," Science, Technology, and Human Values 6 (1980): 24-32; or H. Tristram Englehardt, Jr., The Foundations of Bioethics (Oxford, England: Oxford University Press, 1986). 16. See, for example, Young, Justice and the Politics of Difference. 17. See, for example, Hoagland, Lesbian Ethics, and Lorraine Code, What Can She Know? Feminist Theory and the Construction of Knowledge (Ithaca, NY: Cornell University Press, 1991). 18. For example, Virginia Held, "Feminism and Moral Theory," in Kittay and Meters, eds., Women and Moral Theory, 111-28. 19. Annette C. Baier, Postures of the Mind: Essays on Mind and Morals (Minneapolis, MN: University of Minnesota Press, 1985). 20. See, for example, Young, Justice and the Politics of Difference, and Hoagland, Lesbian Ethics. 21. Genevieve Lloyd, The Man of Reason: "Male" and "Female" in Western Philosophy (Minneapolis, MN: University of Minnesota Press, 1984). 22. See, for example, Hoagland, Lesbian Ethics. Communitarians also oppose the primacy liberalism grants to individuals, but communitarians seem willing to value communities as such while feminists demand critical evaluation of them. Feminists perceive the need to weigh the injustices perpetuated by a community in their evaluations of it. See, for example, Marilyn Friedman, "Feminism and Modern Friendship: Dislocating the Community," Ethics 99 (1989): 275-90, and Young, Justice and the Politics of Difference, ch. 8. 23. Susan Moller Okin, Justice, Gender, and the Family (New York, NY: Basic Books, 1989). 24. Young, Justice and the Politics of Difference. 25. See, for example, Barbara Ehrenreich and Deirdre English, For Her Own Good: 150 Years of the Experts' Advice to Women (New York, NY: Anchor Books, 1979); Sue Fisher, In the Patient's Best Interest: Women and the Politics of Medical Decisions (New Brunswick, NJ: Rutgers University Press, 1986); Alexandra Dundas Todd, Intimate Adversaries: Cultural Conflict between Doctors and Women Patients (Philadelphia, PA: University of Pennsylvania Press, 1989); and Evelyn C. White, ed., Black Women's Health Book: Speaking for Ourselves (Seattle, WA: Seal Press, 1990). 26. A good summary of materials addressing American medicine's treatment of women can be found in Rima D. Apple, ed., Women, Health, and Medicine in America: A Historical Handbook (New York, NY: Garland, 1990). For a historical picture of medicine's treatment of women in Canada, see Wendy Mitchinson, The Nature of Their Bodies: Women and Their Doctors in Victorian Canada (Toronto, Canada: University of Toronto Press, 1991). 27. See, for example, Barbara Ehrenreich and Deirdre English, Complaints and Disorders: The Sexual Politics of Sickness (Old Westbury, NY: Feminist Press, 1973), or Todd, Intimate Adversaries. 28. Women are encouraged to check constantly on the normality of their procreative system events—onset of menstruation, birth control, pregnancy, abortion and miscarriage, labor, childbirth, postpartum conditions, and so on. . . . We [women] are acutely aware that something might go wrong and typically feel we need medical expertise to assess normality and to accomplish care. Janet Carlisle Bogdon, "Childbirth in America 1650 to 1990," in Apple, ed., Women, Health, and Medicine, 101-20, 103.


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29. For a collection of some critiques that are not explicitly feminist, see John Ehrenreich, ed., The Cultural Crisis in Modern Medicine (New York, NY: Monthly Review Press, 1978). 30. Changes are beginning to be felt in these demographic patterns, but 84.8 percent of physicians practicing in the United States were still male in 1986 (Todd, Intimate Adversaries), and until very recently, minorities faced systematic barriers to admission to medical practice (White, ed., Black Women's Health Book). The dominance of white nurses over racial minorities, both as nurses and as nurses' aides and support staff is documented by Darlene Clark Hine, Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890-1950 (Bloomington, IN: Indiana University Press, 1989). 31. Sue V. Rosser, "Re-visioning Clinical Research: Gender and the Ethics of Experimental Design," Hypatia 4 (Summer 1989): 125-39. 32. See White, ed., Black Women's Health Book, and Edward H. Beardsley, "Race as a Factor in Health," in Apple, ed., Women, Health, and Medicine, 12140. 33. See Michelle Stanworth, ed., Reproductive Technologies: Gender, Motherhood and Medicine (Minneapolis, MN: University of Minnesota Press, 1987), and Renate D. Klein, ed., Infertility: Women Speak Out about Their Experiences of Reproductive Medicine (London, England: Pandora Press, 1989). 34. For an article bringing a feminist perspective to bear on the termination of life-sustaining treatments, see Steven H. Miles and Alison August, "Courts, Gender and 'the Right to Die,' " Law, Medicine & Health Care 18 (1990): 85-95. 35. Inge Broverman, Donald Broverman, Frank Clarkson, Paul Rosenkrantz, and Susan Vogel, "Sex-Role Stereotypes and Clinical Judgments of Mental Health," in Elizabeth Howell and Marjorie Bayes, eds., Women and Mental Health (New York, NY: Basic Books, 1981). 36. Seager and Olson, Women in the World, 28. 37. For an empirical and theoretical analysis of this imbalance and some of its effects, see Fisher, In the Patient's Best Interest. 38. See, for example, Evelyn Fox Keller, Reflections on Gender and Science (New Haven, CT: Yale University Press, 1985). 39. Despite many feminists' hope for more symmetrical parenting arrangements, different styles of interaction are still suggested by the concepts of "mothering" and "fathering." See Held, "Feminism and Moral Theory," and Sara Ruddick, "Maternal Thinking," Feminist Studies 6 (1980): 342-67, for discussion of the richness that the mother-child relationship offers to ethical discussion. See Code, What Can She Know? and Hoagland, Lesbian Ethics, for proposals of friendship as a model for human relationships. I have toyed with the prospect of developing a concept of "amicalism" as a preferable alternative to paternalistic decision making in medicine in Sherwin, No Longer Patient, 157. 40. See, for example, Nora K. Bell, "What Setting Limits May Mean: A Feminist Critique of Daniel Callahan's Setting Limits," Hypatia 4 (Summer 1989): 169-78. 41. See Kathryn Pauly Morgan, "Women and the Knife: Cosmetic Surgery and the Colonization of Women's Bodies," Hypatia 6 (Fall 1991): 25-53. 42. Ibid. 43. Kathryn Morgan has begun such an analysis in "Part III: The Gender Lens" of "Philosophical Analysis: Permissibility of Sexual Contact Between Physicians and Patients," presented to The College of Physicians and Surgeons of Ontario.

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44. For example, in early 1992, women constituted four out of nineteen members of the board of directors of The Hastings Center, and two out of six of its officers. These lists appear inside the cover of the Hastings Center Report. 45. We are beginning to see some change in this. Some recent conferences have addressed African American perspectives on bioethics and women's health issues, with speakers from the key groups. See Harley E. Flack and Edmund D. Pellegrino, eds., African-American Perspectives on Biomedical Ethics (Washington, DC: Georgetown University Press, 1992), and the Hastings Center Project that initiated this collection. 46. I have seen no data on this subject and hence am not making any strong empirical claim about established differences in concerns. Research may well establish that nonprivileged patients rank autonomy as highly as do most moral theorists, though I tend to doubt it. My point is that autonomy is important to a relatively privileged group in society whose members have benefited from a social system that customarily respects their autonomy. Those who have had little opportunity to exercise autonomy may assign it a different value. Until we find ways to include more diverse voices in the debates of bioethics, we have little reason to assume that the value rankings of other groups are the same as those of the group from which current practitioners in the field are drawn. 47. For example, aboriginal representatives might seek alternative community-centered health services, run by paraprofessionals from within their own communities who are able to wed traditional values and healing practices with some of the innovations of modern medicine. Such health workers would probably be far more understanding and respectful of traditional remedies than the average health care professional. 48. See, for example, Virginia L. Warren, "Feminist Directions in Medical Ethics," Hypatia 4 (Summer 1989): 73-87. 49. Some of the leading bioethics institutions and journals have made deliberate efforts to present international perspectives on bioethics; they have recognized the value of enriching American discussions with the insights of other cultures. It is important, though, that we seek out a diverse range of contributors from these nations as well as our own. Too often, the tendency is to rely on the articulate privileged classes to speak on behalf of their whole culture, without attending to the needs and values of more disadvantaged members of their/our societies. 50. See Rebecca Dresser, "What Bioethics Can Learn from the Women's Health Movement," in this volume.

2 Feminist Approaches to Bioethics Rosemarie Tong

Debate and dialogue, controversy and consensus, criticism and construction: these signal that bioethicists are in the process of reinterpreting the relationship between ethical theories, principles, rules, and particular moral judgments. In a thirty-year retrospective article for the Journal of the American Medical Association, Edmund Pellegrino claims that medical ethics is undergoing a transition equal to the one it made when it shifted from the "Hippocratic ethic" to so-called "principlism."1 As he sees it, medical ethics is now living through a period of "anti-principlism," the outcome of which is uncertain.2 Most of what Pellegrino notes about the "metamorphosis" 3 of medical ethics also applies to the evolution of broader bioethics. At present, the bioethics community is in ferment as representatives of various schools of thought engage in serious negotiations and accommodations with each other,4 aimed at shaping a bioethics resilient enough to meet the moral challenges of the twenty-first century. According to Pellegrino, principlism replaced the Hippocratic tradition's emphasis on duty, virtue, and gentlemanly conduct after the fragmentation of this ancient medical ethics' world view.5 The Hippocratic tradition flourished largely because it functioned in relatively homogeneous societies. Individuals held their values in common, rarely disagreeing about the application of such terms as "right" and "wrong" or "good" and "evil." As societies became more heterogeneous, the Hippocratic tradition no longer spoke to all individuals, since their notions about fundamental values grew increasingly incompatible. A new

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foundation for medical ethics was needed, one that would serve modern societies as well as the Hippocratic tradition had served ancient ones. This foundation emerged in the form of principlism, an approach to moral decision making increasingly adopted by bioethicists, as well as medical ethicists, beginning in the 1970s.6 Perhaps attempting to strike a mean between deductivism and inductivism, bioethicists such as Tom Beauchamp and James Childress offered moral agents four prima facie principles—autonomy, beneficence, nonmaleficence, and justice—applicable to cases of informed consent, experimentation on human subjects, euthanasia, abortion, assisted reproduction, genetic screening, the allocation of scarce medical resources, and so on. Beauchamp and Childress signaled that these principles would play the major role in achieving a reflective equilibrium between the abstract norms of ethical theory and particular cases involving particular people.7 Because these principles were presumably ones that any rational moral agent, irrespective of his/her individual background, would accept as morally binding, they were to be followed unless, as Pellegrino puts it, "some strong countervailing reasons existed to justify overruling them."8 Possible conflicts between these principles, as well as possible overrulings of all of them troubled Beauchamp and Childress;9 but like W. D. Ross, who had originally developed the idea of prima facie duties,10 they seemed to accept the "vague formula of taking the action that gives the best balance of right over wrong"11 in contested cases. Despite its enormous appeal as a possible compromise between deductivism and inductivism, principlism (which might better be termed "coherentism") has come under increasing attack. For the most part, principlism's critics have been of two sorts: (1) those who claim that its principles are not moored in a single, stabilizing, and universal moral theory; and (2) those who claim that its principles are too removed from the concrete particularities of everyday human existence. Since these two kinds of critics are likely to challenge any approach to bioethics that attempts to accommodate human differences without losing sight of human similarities, each of them merits more than a polite hearing. Principlism's first set of critics fault it for lacking a unified moral theory and subsequently failing to provide moral agents with adequate action guides. In particular, K. Danner Clouser and Bernard Gert have objected that principlism's four core principles are no more than a collection of "suggestions and observations"12 relating to moral issues. In their estimation, principlists borrow beneficence from Mill, autonomy from Kant, justice from Rawls, and nonmaleficence from Gert, presenting the resultant blend as an integrated and unified theory when

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nothing could be further from the truth.13 Worse, principlists encourage moral agents to mix and match these bioethical principles willy-nilly, "as if one could sometimes be a Kantian and sometimes a Utilitarian and sometimes something else, without worrying whether the theory one is using is adequate or not."14 In sum, principlism should be rejected because it cannot provide moral agents with "a single, clear, coherent, and comprehensive decision procedure for arriving at answers"15—a bulwark against relativism. Another set of critics, mostly casuists16 and communitarians,17 fault principlists not because they lack a unified moral theory, or even because they cannot rank order their principles in cases of conflict,18 but because the critics perceive principlists as wanting to ground their entire ethics externally—in some sort of domain that transcends the variabilities and vicissitudes of space and time (for example, in Kant's pure reason). Although Beauchamp and Childress have stated that nothing could be further from their intention,19 that they regard not some Archimedean point but life as the source of ethics, most casuists and communitarians remain unconvinced.20 They doubt that principlists are really coherentists who "move from general levels of theory to particular rules, judgments, and policies that are in close proximity to everyday decisions in the moral life."21 As these critics see it, principlism is what its name implies: a prescription for bioethical reasoning that favors "top-down" reasoning (from theories to principles to rules to particular moral judgments), even if it is also capable of "bottom-up" reasoning (from particular moral judgments to rules to principles to ethical theories).22 According to casuists such as Albert R. Jonsen and Stephen Toulmin, bioethical decision making is guided not by universal and abstract theories and principles, but by particular and concrete paradigms and analogies.23 Casuists search for paradigm cases that embody a society's general rules or maxims of right conduct (for example, Hippocrates's "first, do no harm").24 Armed with "common sense,"25 they then try to fit morally unsettled cases into the contours of these morally settled paradigm cases. New paradigms emerge when large numbers of new cases with many features in common fit none of the old paradigms. Communitarians also have a highly contextual and historical approach to bioethical decision making, but grounded not so much in cases as in traditions and virtues. For them, ethics is largely about establishing and honoring the social rules and cultural ideals that motivate and regulate a group's practices. As defined by Alasdair MacIntyre, a practice is any coherent and complex form of socially established cooperative human activity through which goods internal to that form of activity are

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The Relationship of Feminism and Bioethics realized in the course of trying to achieve those standards of excellence which are appropriate to, and partially definitive of, that form of activity, with the result that human powers to achieve excellence, and human conceptions of the ends and goods involved, are systematically extended.26

Maclntyre claims that the range of human practices is very wide, including everything from the arts and sciences on the one hand, to games such as football and chess on the other. It certainly includes the major professions: law, education, business, and medicine. Thus, communitarians might argue that becoming a good physician, for example, is not a matter of improving the relation between one's actual decisions and some universal set of rules or principles, but a matter of submitting one's "own attitudes, choices, preferences, and tastes"27 to the historically situated standards that determine what counts as good medicine. Other critics of principlism (and, for that matter, deductivism) raise different concerns than casuists and communitarians. Instead of looking to the past—to settled cases or established practices—"conversationalists" (my generic term for proponents of communication, discourse, and narrative ethics)28 and pragmatists29 look to the future: to the creation of moral consensus through conversation and collaboration. Conversationalists argue that the ultimate aim of bioethical decision making is not to marshall the facts of a case around some grand theory, set of overarching principles, or even cluster of paradigm cases. Rather, the function of this process is to reveal to people the moral content and consequences of their family traditions, psychological characteristics, spiritual resources, socioeconomic status, personal experiences, and religious beliefs. Conversationalists maintain that if people listen to each other attentively, over time they will conclude their unique stories satisfactorily, that is, in a way that provides meaning to otherwise incomprehensible situations (after all, why is it that we human beings have to suffer and die?).30 Narratives are powerful action guides not because they rightly order principles, but because through them people with different moral perspectives can either achieve consensus or lapse into the kind of silence that invites others to join the conversation. Pragmatists are akin to conversationalists insofar as they affirm the validity of what Mary Mahowald refers to as the "classical pragmatist position that knowledge is perspectivally attained by individuals, whose collective perspective is improved through collaboration."31 In pragmatists' estimation, each moral agent's understanding of a case is partial; it is much more like belief than knowledge. Thus moral agents must bring their different perspectives together to achieve an under-


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standing that is less partial (in the sense both of less complete and less subjective). Through this type of collaborative or team effort, moral agents have the best chance of discerning what they ought to do in any given situation. Pessimists might view the present ferment in bioethics as a crisis and prepare to press the panic button. Admittedly, change is unsettling, uncomfortable, and unpredictable. Yet precisely because it is all of these things, change is full of opportunities for growth. There could not be a better time, then, for feminist approaches to bioethics to make their debut. My aim in this chapter is to discuss the overall value of these new approaches to bioethics. First, I distinguish among feminist approaches to bioethics, noting their diversity and their relationship to feminist approaches to ethics in general. Second, I show how a cluster of these feminist approaches—specifically, liberal, radical, and cultural ones—illuminate important issues of choice, control, and caring in bioethical decision making. Third, I use this cluster of feminist approaches to analyze and interpret a bioethical case that goes beyond women and reproduction. Fourth, I sketch some of the general criticisms that have been raised against feminist approaches to bioethics, arguing that they are largely answerable. Finally, I conclude that emerging feminist approaches to bioethics offer to traditional bioethics the opportunity not only to check its operating assumptions, methodologies, and goals for "sexist" assumptions (a project to which some critics might wrongly confine feminist bioethics), but also to reconsider what kind of moral guidance people actually want and need.

Feminist Approaches to Bioethics: Their Characteristics and Commitments Although the scope of feminist bioethics is more limited than that of feminist ethics, so far feminist ethicists and bioethicists have developed compatible approaches to moral theory and practice. Since the close working relationship between these two groups of thinkers is likely to continue, one of the best ways to predict future developments in feminist bioethics may simply be to understand past developments in feminist ethics. Like several other feminist thinkers,32 I originally regarded as accurate Betty A. Sichel's distinction between feminine and feminist approaches to ethics: "Feminine" at present refers to the search for women's unique voice and most often, the advocacy of an ethics of care that includes nurturance, care, compassion, and networks of communications. "Feminist" refers to those theorists, whether liberal or radical or other orientation, who argue

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The Relationship of Feminism and Bioethics against patriarchal dominations, for equal rights, a just and fair distribution of scarce resources, etc.33

Although I still believe that approaches seeking to contrast careoriented ethics of relationships and responsibilities with justiceoriented ethics of rules and rights do differ in emphasis and style from those aiming to identify, explain, and eliminate patterns of male domination and female subordination, I no longer believe that just because an approach to ethics is care-oriented means that it is inattentive to instances of gender inequity. To be sure, any approach to ethics so naive as to celebrate the value of caring without worrying about who cares for whom is not feminist. Caring can and has served as a trap for women—as a "virtue" that turns women into masochists, living only to serve other people's interests (particularly, men's and children's) while steadfastly neglecting or ignoring their own.34 Yet as Rita C. Manning has effectively argued, a genuine ethics of relationships, responsibilities, and nurturance is not based on the view that because women can and have cared they should continue to care no matter the cost to themselves.35 On the contrary, it is driven by the desire to motivate all human beings to take care of each other. Valorizing and promulgating the traditionally female values of caring, compassion, and community as human values goes hand in hand with liberating women from the structures, systems, and attitudes that oppress them. To the degree that they are concerned with issues of gender inequity, then, those developing so-called "feminine" approaches to ethics and bioethics may simply be termed "cultural feminists,"36 thus correcting the impression that their work is inherently nonfeminist or even antifeminist.37 Liberal, Marxist, radical, psychoanalytic, and socialist feminists—to name only some of the other major schools of feminist thought38— are also developing distinctive approaches to ethics and bioethics.39 Although all these feminist thinkers are committed to eliminating patterns of male domination and female subordination, they neither explain nor propose to end these pernicious patterns in the same way. Liberal feminists maintain that female subordination is rooted in a set of customary and legal restraints that block women's entrance into and success in the so-called "public" world. Excluded from such places as the academy, the forum, the marketplace, and the operating room, the true potential of many women goes unfulfilled. Only when society grants women the same educational and occupational opportunities that it grants men will women become men's equals.40 Marxist feminists argue that capitalism itself, not just the larger social rules that privilege men over women, causes women's oppression. If all women, not just the relatively privileged or exceptional ones, are


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ever to be liberated, the capitalist system must be replaced by a socialist system under which everyone is economically independent. Women must be men's economic, as well as political, equals before they can enjoy the same opportunities that men have.41 Radical feminists insist that neither women's economic position nor women's lack of equal educational and occupational opportunities provides an adequate explanation for female subordination. Rather, women's reproductive roles and responsibilities, as well as the "institution of compulsory heterosexuality,"42 are the fundamental causes of women's oppression by men. Unless women are truly free to have or not have children, to love or not love men, women will remain men's subordinates. Like radical feminists, psychoanalytic feminists also focus on gender and sexuality, but in a markedly different way. According to standard psychoanalytic accounts, in the pre-Oedipal stage all infants are symbiotically attached to their mothers. During the Oedipal stage, the mother-son symbiosis usually breaks once and for all. The boy gives up his mother in order to escape castration at the hands of his father. As a result of submitting his desires (the id) to the laws of society (the superego), the boy fully integrates into culture. In contrast to the boy, the girl, who has no penis to lose, separates slowly from her mother. As a result, the girl's integration into culture is incomplete.43 Psychoanalytic feminists argue that society needs to create systems of dual parenting and dual careers so that children will no longer absorb at an early age the gender stereotypes of public man and private woman: the authoritarian, working father and the nurturant, at-home mother.44 One reaction to the rich diversity of feminist thought has been socialist feminists' attempt to weave these separate strands of thought into a coherent whole. In Woman's Estate, Juliet Mitchell argues that four structures overdetermine woman's condition: production, reproduction, sexuality, and the socialization of children.45 Woman's status and function in all of these structures must change if she is to be man's equal. Furthermore, as Mitchell adds in Psychoanalysis and Feminism, woman's interior world, her psyche, must also be transformed; unless a woman is convinced of her own value, no change in her exterior world can ultimately liberate her.46

Liberal, Radical, and Cultural Feminist Approaches to Bioethics: Some Perspectives on Choice, Control, and Caring in Bioethical Decision Making Each of the feminisms I have described above, as well as several of the ones I have not described, has oriented or could orient a feminist ap-

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proach to bioethics. Nevertheless, when I discuss feminist approaches to bioethics in this chapter, I plan to focus on liberal, radical, and cultural feminist perspectives. It is not that these perspectives are somehow better than other feminist perspectives. Rather, my decision to use here only the lenses of liberal, radical, and cultural feminists is quite pragmatic. In the first place, it is simply too unwieldy to try on every pair of feminist lenses available in an effort to get yet a better focus on a particular bioethical issue. Perhaps we should heed Virginia Held's advice that in order to make better moral decisions, we must decide which of several moral perspectives is most likely to provide us with the insights needed to answer a given moral question. Comments Held: We need, I think, a division of moral labor. Different persons in different roles in different domains of society ought to develop and to experiment with different moral approaches. These approaches will include some very general and abstract moral principles together with intermediatelevel principles appropriate to the domains in question, such as principles about the justifiability of enforcing respect for rights to speak freely, or principles about the responsibilities of one generation for the environment of a future generation. The danger of fragmentation with a division of moral labor is, I think, much less than the danger of stagnation in moral inquiry if we refuse to accept a measure of differentiation.47

In the same way that we learn which tools in our garage are most likely to "do the job," and which spices in our kitchen are likely to produce an edible meal, we may be able to learn which moral perspective or combination of moral perspectives is most likely to solve a moral dilemma. Second, and more importantly, liberal, radical, and cultural feminist approaches serve as excellent foils for one another. Their different perspectives on the nature, form (embodied or disembodied), and value of the self's relationship to others explain liberal feminists' emphasis on issues of choice, radical feminists' emphasis on issues of control, and cultural feminists' emphasis on issues of caring. That this is the case requires some explanation, however. For quite some time, a variety of theorists have argued that lurking within the deep structure of traditional ethics (and, I would add, traditional bioethics) is a creature known as the autonomous self, generally pictured as a biological male, intent on maximizing his self-interest.48 This autonomous self has had a particularly difficult existence, according to legal theorist Robin West. At times his separation has led him to fear annihilation by others. The interests of separate individuals collide, and when they do so, conflict ensues. At other times, however,


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the autonomous self's separateness has caused him to feel alienation from others. He has not been able to find friends to ease his loneliness. In sum, separation, whether it results in annihilation or alienation, whether it is experienced as freedom or isolation, would seem to be man's tragic origin.49 The separation thesis is not the exclusive possession of biological males, however. In their desire to secure for women the same opportunities, occupations, rights, and privileges men have had, many liberal feminists have adopted the "male" ontology of the self's separation from others.50 Indeed, in their drive for sameness with men, these liberal feminists have sometimes denied their sameness with women.51 They have cautioned women against emphasizing their differences from men, viewing these biologically produced and/or culturally shaped "othernesses" as traps that limit women to reproductive and domestic tasks. Supposedly, it is for women to maintain the species, while men push it on to even greater heights. In contrast, most radical and cultural feminists have rejected "male" ontology. West notes that the central insight of these thinkers is "that women are 'essentially connected,' not 'essentially separate,' from the rest of human life, both materially, through pregnancy, intercourse, and breast-feeding, and existentially, through the moral and practical life."52 Yet as West also observes, cultural and radical feminists have reacted very differently to women's connectedness. Valorizing the traits and behaviors traditionally associated with women, cultural feminists have stressed the positive side of the connection thesis, praising women's capacities for sharing, giving, nurturing, sympathizing, empathizing, and above all, connecting. In their estimation, women value their relationships with others above everything else in life, viewing separation from others as the quintessential harm. Through their bodies women link one generation to the other. The fact that they menstruate, gestate, and lactate gives women a unique perspective on the meaning of human connection. For women, connection is not about separate individuals signing social contracts, but about life as most people experience it on a daily basis—within kinship groups in which they have nonvoluntary membership.53 Radical feminists have emphasized the negative side of the connection thesis, agreeing with cultural feminists that connection is women's fundamental reality, but lamenting this state of affairs. They believe connections set women up for exploitation and misery: "Invasion and intrusion, rather than intimacy, nurturance, and care, is the 'unofficial' story of women's subjective experience of connections."54 Women are connected to others, most especially through the experiences of heterosexual intercourse and pregnancy. But when the sugar-coating is licked off, these connecting experiences taste of women's violation. This harm

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is unique to women; men cannot understand. Women do not fear either annihilation by the other or alienation from the other, as much as they dread occupation by the other: the uninvited penis, the unwanted fetus.55 Provided with an explanation of the ontological differences and similarities that underlie liberal, radical, and cultural feminist thought, we can better appreciate how representatives of these various schools of thought have approached bioethical decision making in the past, and better predict how their lines of analysis may develop in the future. Where women's reproductive capacities are the focus of a bioethical analysis, liberal, radical, and cultural feminists have articulated distinctively different positions. Faced with a bioethical decision related to contraception, sterilization, abortion, in vitro fertilization, artificial insemination by donor, or maternal-fetal conflict, most liberal feminists ask questions about choice. Was the woman fully informed about her reproductive choices? Was she competent to assess them? If so, it is her own business to decide whether, with whom, or how she procreates, provided that she does not cause unjustifiable harm to others. In contrast, most radical feminists focus on issues of control. They observe that men—be they fathers, husbands, lovers, employers, or judges— often cause women to make reproductive "choices" they would not otherwise make. Finally, faced with the same kind of reproductive concerns, most cultural feminists suggest ways in which women can maintain their connections to others without being misused or abused. Not every pregnancy is an occupation, nor are all abortions liberations. Not every surrogate mother is a slave, nor are all contracting couples masters. In cultural feminists' estimation, throughout history a remarkable number of women have worked together (and with men and children also) to create and maintain caring communities under conditions of oppression, including that of male domination and female subordination.56 Clearly, when it comes to moral concerns about women and reproduction, liberal, radical, and cultural feminists offer traditional bioethics some new perspectives. Yet these same perspectives may also be applied to cases beyond women and reproduction, because issues of choice, control, and caring are omnipresent in bioethical decision making. Moreover, I believe that these (and other) feminist perspectives not only can but should be brought to traditional bioethics, because what feminists see about human relationships, especially malefemale relationships, others cannot easily see. This claim is a large one, and although I cannot thoroughly defend it here, I will try to illustrate it by interpreting a case voluntarily reported to Lisa Belkin by the involved parties and subsequently published in the New York Times Magazine.57 Entitled "The High Cost of Living," Belkin's case shows how


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male as well as female patients can lose their powers of choice, control, and caring before the power of authority, and suggests why a feminist analysis may be better suited than a traditional one to explore such issues of domination and subordination.

The Armando Dimas Case: Moving Beyond Women and Reproduction As told by Belkin, the night that twenty-four-year-old Armando Dimas was shot, the emergency room of Houston's Hermann Hospital was crowded to capacity, a fact that caused some of the hospital staff to speculate that Dimas was admitted largely because hospital authorities viewed him as a potential organ donor. After a preliminary examination of Dimas, David MacDougall, the neurosurgeon on call, concluded that "This guy should be dead."58 But he was not dead. The patient had been resuscitated, returned to consciousness, and put on a ventilator for life support. Gathered around his bed were his immediate family: a fourteen-member group of illegal Mexican immigrants who had recently applied for residency in the United States under a new amnesty law. Although most of the hospital staff believed that Dimas would want to die if he knew his actual condition, his mother, Victoria Dimas, refused to let anyone tell her son that he would never walk again. MacDougall finally broke the gridlock. He asked social worker Cindy Walker to convene a meeting between Dimas's major hospital caregivers and his family. Directing his attention primarily to Mrs. Dimas, and speaking through an interpreter, MacDougall told her that it was time to face reality: no one was going to perform a miracle on her son. Mrs. Dimas responded angrily to MacDougall, exploding in Spanish that it was wrong to lie to her son: "He can walk, he will walk. He can breathe; he will not need that machine."59 The meeting, to which the patient had not been invited, ended as abruptly as it had been convened. Informed about the unsuccessful confrontation, hospital authorities decided it was best to tell Dimas about his condition, his mother's protests notwithstanding. They selected nurse Norma McNair to tell him the awful truth. To everyone's surprise, Dimas did not opt for a donot-resuscitate order. Using two blinks of his eyes for "yes" and one for "no," he communicated a desire for full treatment. He wanted it all—cardiopulmonary resuscitation, antibiotics, ventilators, feeding tubes. The staff was speechless. Since patients in Dimas's condition should not want to live, they did not know what to do. As Dimas's drama unfolded, he became a problem for the hospital's cost controller, former nurse Hazel Mitchell. Because Dimas lacked insurance and his family was too poor to pay even a fraction of his bill,

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the hospital had to absorb the total cost. Dimas also became a major challenge for occupational therapist Mary Coffey. She soon realized that besides teaching Dimas how to speak and eat, she could accomplish little else for him until he had a custom-made wheelchair to support his back and head, thereby enabling him to use a "mouthstick." With this device, Dimas would have an opportunity to learn the kind of skills that could secure him future employment. Although Mitchell initially refused to pour more hospital resources into Dimas, she later relented and ordered the special chair (which turned out not to fit him). However, she also decided to move Dimas to Hermina Bartkowski's Total Life Care Center ("Bart's," for short). There the bills would be $300 a day instead of $890, largely because the staff consisted of Polish immigrant physicians plus nurses willing to work as nurses' aides for very low salaries. Dimas liked Bart's, where the standard of care was amazingly high due to the efforts of director Bartkowski, widely revered as a saint. Compared to the rough-and-tumble life in the streets Dimas once walked, Bart's was a safe and comfortable haven: "I see my family . . . my sister brings me food . . . . It's nice here . . . . In a lot of ways things are good . . . . If I hadn't been shot, I would have died."60 However, after four and one-half years and approximately $750,000 worth of treatment, Hermann Hospital was tired of paying Dimas's bills at Bart's and gave his family one month to learn how to care for him at home. Although the Dimas family objected to this turn of events, Dimas was sent home at the end of the thirty days, still without an adequate wheelchair. There he remains, with round-the-clock care provided by his family, but primarily by his ailing mother. Dimas seems to be happy, however, spending much time with his elementary-school-aged, illegitimate son, who visits frequently. He no longer complains that he was sent home, stating matter-of-factly, "Things changed. This is the way it is. That's all."61 But is that all? Is this the way it should be? Why did things change? Focusing on issues of choice, liberal feminists might initially be persuaded that Dimas's case was handled in an ethically appropriate manner. The principle of autonomy (liberalism's major playing card) seemed to appropriately trump the principle of beneficence. After all, the hospital staff honored Dimas's decision to go on living, despite their overall belief that he would be better off dead. What is more, the principle of justice seemed correctly to counter the principle of beneficence. Only after the hospital authorities weighed their general responsibilities to all their patients against their particular responsibilities to Dimas, did they decide it was time for Dimas to return home, where he could be cared for in a relatively inexpensive manner. On further reflection, however, liberal feminists might wonder just


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how autonomous Dimas's choices had really been. Communication gaps were numerous in his case, and since any lack of communication tends to empty the meaning of informed consent, it is more than conceivable that Dimas did not always understand his treatment options. To be sure, the staff eventually gave him the information he needed to decide to refuse a do-not-resuscitate order, but they may not have also given him enough information to decide to participate (or not participate) in his own rehabilitation program. The fact that Dimas never protested his not learning the mouthstick skills Coffey regarded as essential to his rehabilitation might signal to liberal feminists that he either did not want to learn these skills, deeming them a paternalistic intrusion into his life, or that he did not understand how limited his life opportunities would be without them. Similarly, liberal feminists might come to doubt that hospital authorities really treated Dimas as fairly as they should have. Had Dimas been insured, a properly-fitting wheelchair would probably have been found for him quickly, and every effort would have been made to teach him any learnable skills he wanted to acquire. Negative rights—the right to refuse unwanted treatment—are only half the story. Positive rights— the right to demand wanted treatment—may be the other.62 If the only choice poor patients have is the choice to say "no," their range of treatment options is limited indeed. Instead of focusing on what they perceive as beside-the-point issues of choice, most radical feminists would examine issues of control. They would emphasize how powerless patients are relative to the physicians, other health care professionals, and hospital administrators in charge of their treatment. Specifically, they might view as inappropriate the hospital staff's eagerness to get Dimas's consent to a do-notresuscitate order. In comparison to most of the people in charge of his fate—that is, the socially and economically privileged hospital physicians and administrators—Dimas, a poor, uneducated, Mexican American day laborer was always relatively powerless. His powerlessness became nearly absolute when MacDougall pronounced him "a head in a bed,"63 a thing to run from as quickly as possible. Articulating a variation on this same theme, radical feminists might also note that, like Dimas, his relatives were relatively powerless within the health care system and its structures. The Dimas family panicked when hospital authorities gave them one month to learn how to care for Dimas at home (home being a five-room trailer with an onagain, off-again electrical system, a dysfunctional heating system, and three times as many occupants as rooms). Indeed, Mrs. Dimas exclaimed, "We aren't educated enough to run that machine. Something will happen to him and we won't know what to do. We aren't educated, and it's too late for us to become educated. This is all we are."64

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In the end, the Dimas family adjusted to the rigors of home care for a quadriplegic. They had no other option, not if they wanted Dimas to go on living. In a similar vein, the nurses aides at Bart's adjusted to their new life in the United States. Lacking significant opportunities for meaningful work, these Polish-immigrant physicians and nurses chose to work at Bart's in an attempt to maintain their dignity. Made under conditions of severe constraint, such "choices" are not, in the view of radical feminists, true expressions of one's will. Rather they are coping mechanisms: strategies to make the best out of situations one has little or no power to change. Interested in all the uses, misuses, and abuses of power in Dimas's case, most radical feminists would be particularly interested in gender inequities. They might be quick to observe that the people with the least power in Dimas's case (the nurses, nurses' aides, occupational therapists, and social workers) occupy traditionally female-dominated positions. Indeed, almost all of the people doing the hard work in Dimas's case—cleaning his body, sticking him with needles, teaching him how to eat and talk, bearing the brunt of his home care—are women. In their concern that women sometimes care too much for others and not enough for themselves,65 radical feminists might even dare to ask some troubling questions about Dimas. He may be powerless relative to white men, educated men, propertied men, men who are United States citizens, able-bodied men, and even "exceptional women" such as Mitchell, the former nurse turned cost controller who succeeds in a male-dominated occupation. Yet Dimas is not powerless relative to most women, especially the women in his family who, like him, belong to an ethnic group in which the man rules the roost.66 Radical feminists might wonder how caring Dimas would be if his mother had been the injured one. They might also wonder whether Mrs. Dimas, knowing how difficult it is to care for a severely disabled person at home, would either expect or want her family to devote themselves totally to her care. Indeed, in reference to women who almost single-handedly provide home care for their family members, Barbara Logue has already asked: Will women who have done all this for others—voluntarily or not—want another woman (their daughter or daughter-in-law, perhaps) to do the same for them? Will memories of their own negative or ambivalent feelings, role conflict, or even a sense of altruism, increase their desire not to be a burden to others? . . . Will such considerations enhance their willingness to choose death instead?67

Responding to Logue's query, radical feminists would probably speculate that an injured Mrs. Dimas, not wishing to be a burden on her


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family, especially her daughters, would willingly refuse further medical treatment for herself. In contrast to radical feminists, cultural feminists would focus on issues of caring and connection rather than control and occupation. They would probably comment on the kind of relationships established between Dimas and the health care professionals assigned to his case. They might speculate that Mitchell and Walker, for example, really wanted to do more for Dimas, but could not. When Mitchell refers to an ancient Chinese saying—"if you save a life, you are responsible for it" 68— cultural feminists might hear Mitchell expressing a desire to do everything possible for Dimas, a desire frustrated by the nature of her job which requires her to view Dimas and all the patients at Hermann as statistics and costs. Similarly, in Walker's words, "We can't just buy him a custom-made wheelchair. . . . We have to face the fact that we can't afford him as it is,"69 cultural feminists might hear not the voice of a hardened social worker, fixed on the financial bottom line, but of a caring social worker, painfully aware of the scarce nature of medical resources. An ethics of justice was the only morality Walker's and Mitchell's jobs really permitted them, and within its constraints, they cared for Dimas and their other patients as best they could. In addition to interpreting Mitchell's and Walker's actions sympathetically, cultural feminists would probably single out Mary Coffey, Hermina Bartkowski, and Victoria Dimas for special praise, emphasizing their apparent decisions to move beyond the impartiality of an ethics of justice to the partiality of an ethics of care.70 They might note that Coffey fought to get Dimas connected to the world beyond his family, realizing full well that unless he could learn how to use a mouthstick, he would always remain the one cared for. Since he had no chance to acquire this skill without a properly-fitted wheelchair, Coffey made securing that wheelchair her main priority. Similarly, cultural feminists might observe that for Bartkowski each one of her patients was a unique individual, deserving of special attention. She viewed none of them as just a body. On the contrary, Bartkowski spoke to each of her patients, even the unresponsive ones, as if they understood her every word. Offensive phrases such as "headin-a-bed" never crossed her consciousness. Finally, cultural feminists might note that while the bulk of the hospital staff worried about getting a do-not-resuscitate order from Dimas and closing the "case," Mrs. Dimas felt what her son probably felt: fear and anger. Indeed, when MacDougall informed her "that this is all there will ever be"71 for a "head in a bed," Mrs. Dimas reacted with rage against what she probably perceived as an arrogant universalization. How could MacDougall possibly know the things she knew about her son—his singular strengths as well as hidden weaknesses? Indeed,

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how could anyone on the hospital staff know better than she what her son really needed? The whole time the staff was preoccupied with getting Dimas to consent to a do-not-resuscitate order, it never occurred to Mrs. Dimas or, for that matter, to anyone else in the Dimas family, to think that they could disconnect from Armando at will. Instead of viewing Mrs. Dimas as an irrational woman who made excessive demands on the health care system, cultural feminists would probably see her as a caring mother who in seeking treatment for her son relied on her "feelings, needs, impressions, and . . . sense of personal ideal"72 rather than on some set of moral axioms, theorems, or principles.

Critique of Feminist Approaches to Bioethics Liberal, radical, and cultural feminist approaches to cases like that of Armando Dimas are open to at least two kinds of criticism.73 Some critics might accuse them of not being properly theoretical. They might allege that choice, control, and caring are simply autonomy, beneficence, nonmaleficence, and justice dressed in women's garb. They might complain, in other words, that like Beauchamp and Childress's principles, feminists' concerns lack mooring in a bona fide ethical theory. In contrast, other critics might fault feminist approaches for being too theoretical; that is, for clinging to the category of gender as the ultimate reference point or foundation for women's diverse experiences, as if gender always mattered to each woman more than her race or class, for example.74 Feminist bioethicists might simply deny the first charge—that choice, control, and caring are an unfocused hodgepodge of moral concerns— noting that, on the contrary, these concerns are all grounded in one or more of the feminist theories discussed above. Additionally, feminist bioethicists might respond that, in what is still a "man's world," women's ability to make choices, to exercise control over their destinies, and to care in ways they find meaningful are more limited than men's. So long as gender inequities remain, there will be a need for feminist approaches to bioethics that emphasize women's ways of perceiving, thinking, and acting. If feminist bioethicists were to formulate such a response, however, their critics would probably accuse them of confusing political ideology with ethical theory and of substituting sexist and relativistic rhetoric for moral reasoning.75 Some feminists have already addressed versions of these possible allegations of "sexism" and "relativism." For example, Alison M. Jaggar has defended feminist ethics against the charge of sexism in ways that could be used to defend feminist bioethics from similar accusation. She has cautioned that it is a misrepresentation to believe feminist eth-

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ics is just a "simple inversion" of the five most frequently raised feminist challenges to traditional ethics: lack of concern for women's interests; neglect of "women's issues;" denial of women's moral agency; deprecation of "feminine" values; and devaluation of women's moral experience."77 Those developing feminist approaches to ethics, and I would add bioethics, do not intend to ignore men's concerns so that they can "get even" for what they regard as the tradition's past neglect of women's concerns. On the contrary, most feminists believe that morality is for and about everyone; 78 that if "male" interests, issues, agency, values, and experiences do not exhaust the full range of human values, neither do "female" ones. Nevertheless, just because most feminists wish to forge an inclusionary bioethics, for instance, does not mean that they lack a particular point of view. Indeed, Virginia L. Warren has observed that far from denying their "bias," feminists voluntarily open themselves to challenges by naming their bioethics "feminist." Feminists do not try to stonewall criticism by pretending to be disinterested, objective, impartial spectators whose very lack of interests, subjectivity, and partiality stops conversation before it can begin.79 Just because an approach to bioethics is gendered does not mean it is sexist. If feminists were intent on shaping a sexist bioethics, they would have to do more than proceed from a gynocentric perspective. They would also have to mask that gendered perspective as "human," doggedly excluding the interests, identities, issues, and values of men. Like the charge of sexism, the accusation of relativism is one that feminists have already attempted to address. For example, in her analysis of feminist positions on relativism versus absolutism, Susan Sherwin notes that feminists tend toward relativism—understood as the theory that moral judgments must be made relative to the existing "moral standards of a community."80 Because feminists are increasingly aware of the differences that exist among women (and men also), relativism seems more congenial to their ways of thinking than absolutism—understood as the theory that moral judgments must accord with universal standards that are applicable to all times and places. Nevertheless, Sherwin points out that feminists may also be accused of being absolutists. Feminists assert that gender oppression is wrong. They do not believe that the mere fact that a community happens to oppress women (or poor people, or people of color) necessarily morally justifies that oppression. 81 In her attempt to elucidate just how difficult it is for feminists to steer a course somewhere between absolutism and relativism, Sherwin discusses the widespread practice of female genital mutilation in many African and Middle Eastern countries. She considers that more than eighty-four million women now living have undergone this painful,

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frequently unsanitary, often harmful surgical procedure. Among the justifications for genital mutilation are "custom, religion, family honor, cleanliness, esthetics, initiation, assurance of virginity, promotion of social and political cohesion, enhancement of fertility, improvement of male sexual pleasure, and prevention of female promiscuity." 82 Despite the fact that large numbers of women as well as men endorse this practice, Sherwin still condemns it. In her estimation, some actions are so egregiously wrong—that is, so oppressive—that feminists must say with conviction "This action is wrong," even if some culture or another endorses it. Willing to name female genital mutilation wrong, but not wanting to be labeled a cultural chauvinist or imperialist, Sherwin struggles to distinguish what she terms "traditional relativism" from "feminist relativism." 83 Whereas traditional relativists are prepared to justify a practice such as genital mutilation if the majority of a population accepts it, feminist relativists are not. Sherwin agrees with traditional relativists "that we do not have access to anything more foundational than community standards in ethics,"84 but she also insists that some communities are morally worse than other communities. A community that structures its relations in terms of patterns of domination and subordination is simply morally worse than one that does not. In Sherwin's estimation, feminists are under no obligation to tolerate, let alone respect, a community that systematically exploits, manipulates, dominates, and otherwise harms women or any other group of human beings.85 As difficult as it is for feminists to answer the criticism that their approaches to bioethics are just forms of sexism and relativism hidden under appealing words such as "choice," "control," and "caring," it is even more challenging for them to respond to the charge that their perspectives on bioethical decision making remain beholden to the tradition from which they supposedly seek release. Postmodernist critics claim that in developing explanatory theories for women's status in society, feminists have often mimicked the kind of universalistic, absolutistic, deductivist "male thinking" that insists on telling as absolute truth one and only one story about reality. Because thinkers such as Luce Irigaray, Helene Cixous, and Julia Kristeva, for example, reject foundationalism in any of its forms,86 they guard against any reinstantiations of "phallogocentric" thought in their writing; for them, any thinking that is ordered (centric) around an absolute word (logos) that is "male" in style (phallic) is better not thought at all.87 Thus, Cixous has publicly stated that women seeking liberation from all types of oppression, including the oppression of binary or oppositional thought (such as man/woman, self/other, good/evil, reason/emotion, theory/ practice),88 should not deceive themselves. Just because a theory is la-


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beled a "feminist approach" does not mean it is not a theory akin to all other preceding theories. Indeed, as Cixous sees it, women should reject the label "feminist" as an "oppositional" one that connotes "deviation from a norm [that is, 'maleness']89 instead of a free sexual option or a place of solidarity with women."90 In response to Cixous's and other postmoderns' objections, feminists have pointed to their increasing rejection of "female" essentialism91 as a sign that they have abandoned the kind of theory that postmoderns decry, that is, theory meant to "discipline" difference, to keep "otherness" at bay, to privilege a particular point of view over other particular points of view, and to command most everyone to obey it. In other words, most feminists have rejected the notion that ethics is science, and the assumption that "morality is essentially knowledge; that moral knowledge is essentially 'theoretical,' of an explicitly statable, highly general, and systematically unified type; and that this pure, properly moral knowledge, when brought to bear on incidental 'nonmoral' information about a situation at hand, serves to tell us what to do." 92 In rejecting the notion that ethics is science, most feminists have also rejected the notion that ethics is power. Among other feminists,93 Marilyn Frye has noted the connections between foundationalism and authoritarianism in ethics. She claims that the need for the kind of ethics that has the same right answer for everyone tends to arise "among people occupying certain positions in certain social orders."94 She suggests that judges, teachers, preachers, directors, administrators, managers, and the like—people who make decisions about and for others—require ethics to reassure themselves and others that they actually know what is right.95 Ethics—in particular, the making of moral theory—becomes one of the best ways for those in power to control those without power, to bully and badger the latter into seeing things their way. Yet if feminist ethicists and bioethicists should refrain from moral theorizing for fear of becoming as oppressive as their former oppressors, what other function can and should they serve? Margaret Urban Walker offers feminist theorists what may be one of the best ways for them to escape presiding at their own funeral. She usefully distinguishes between a "theoretical-juridical" mode of theory on the one hand, and an "expressive-collaborative" one on the other.96 In contrast to the former mode of theory that pictures morality "as a compact, impersonally action-guiding code within an agent,"97 the latter one pictures morality "as a socially embodied medium of mutual understanding and adjustment between persons in certain terms, particularly those that define those persons' identities, relationships, and values." 98 Thus ethics changes from an abstract intellectual enterprise conducted in one's mind to a set of concrete cultural practices experi-

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enced in one's everyday existence. "Because persons and their relationships are not uniform and situations are not necessarily repeatable,"99 there is no final, universal answer to a question such as "What is in this patient's best interest?" Instead, there is just collaborative, changing exploration and understanding. Constructing a moral community, in which a wide variety of people can cooperate together even as they maintain their differences, requires much more than the abstract, analytical skills of traditional moral theorizing. It requires a highly developed set of emotional skills and exceptional powers of communication. Walker's description of "expressive-collaborative" theory should appeal to a wide variety of communitarians, conversationalists, and pragmatists as well as feminists. I myself find it enormously persuasive. Yet I worry that in highlighting what feminist thought may have in common with communitarian, conversationalist, and pragmatic thought, Walker may have downplayed what, in my estimation, remains unique to feminist thought, including feminist approaches to bioethics—some kind of feminist standpoint that credits women with being able to see things about reality that men do not typically see. Because the "master's position" in any set of dominating social relations—the general position of men vis-a-vis women—"tends to produce distorted visions of the real regularities and underlying causal tendencies in social relations,"100 men experience their power over women as normal, even beneficial. This is not women's experience, however. They see systems of male domination and female subordination for what they really are: abnormal, indeed harmful ways for men and women to relate. As I have just interpreted feminist standpoint theory, its proponents are subject to at least two lines of criticism. The first complaint is that feminist standpoint theorists make essentialistic claims about woman's nature, according to which all women are the same.101 Responding to this objection, my kind of feminist standpoint theorist might argue that just because she is committed to the view that women are like each other by virtue of their sex does not mean that she is inattentive to the many differences among women (class, race, ethnicity, sexual identity, and age), or to the fact that rich, educated, white women, for example, are more like their male counterparts than poor, uneducated, women of color. 102 On the contrary, my kind of feminist standpoint theorist might argue that not she, but the Tradition, created a unitary vision of "Woman" to serve as a foil for "Man"—a mirror to reflect him in his power and glory.103 Far from wanting to make essentialist claims about "Woman's" nature, my kind of feminist standpoint theorist wishes to deconstruct this abstraction. She thus seeks to free all sorts of women to articulate what they actually think, as opposed to what an androcentric tradition has told them to think about ethics and bioethics, for in-


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stance. As Mary Mahowald has suggested, feminist standpoint theory need not rely on the idea of women understood as a "collectivity" (who all think the same thought), but instead on the idea of women understood as a "plurality" (who think different thoughts).104 The second charge is that feminist standpoint theory is not a preferable vantage point from which to perceive reality, for it wrongly sees women's "oppression" everywhere. Whereas the Tradition offered objective truth and impartial knowledge, feminist standpoint theory offers women an opportunity to complain about "injustices" that exist only in their minds. To this objection, my kind of feminist standpoint theorist might respond, and has already responded, that what traditional theory passed off as objective and impartial knowledge was nothing of the sort. Like all knowledge, the Tradition's knowledge was the product of a set of experiences—in its case, the experiences of mostly white, privileged men. Because women's experiences were not encoded in traditional theory, that theory constituted itself in a very subjective, partial, "male" manner.105 Specifically, Alison Jaggar has argued that what one experiences is mediated through one's body; and what one experiences affects what one thinks and writes. Since women's bodily experiences (in production as well as reproduction) are quite different from those of men, women will tend to see, hear, and feel different things than men see, hear, and feel. 106 To be sure, to the extent that men are involved in women's work, they can see, hear, and feel what women typically do. Yet even then men cannot experience the meaning of having a female body. Both nature and culture burden and empower this female body in ways that they do not burden and empower the male body. Since the kind of feminist standpoint theory I have in mind is constituted through women's experiences, its analysis of gender oppression appears to be intimately related to the experience and meaning of having a female body.107 Thus, feminist approaches to ethics and bioethics, for example, do see, hear, and feel some things about reality that remain largely invisible, inaudible, and imperceptible in any ethics or bioethics constituted through men's experiences. Yet just because my kind of feminist standpoint theorists fault the Tradition for excluding women's experiences does not mean that they believe gender oppression is the worst form of oppression imaginable. On the contrary, they seek to identify and eliminate the kind of oppression that women have traditionally experienced, whether this oppression is directed against all women as women, or against some women and some men on account of their race, class, culture, sexual orientation or preference, or physical or mental challenges. 108 Whatever one thinks of Catharine MacKinnon and Andrea Dworkin's definition of pornography, for example, it invites feminists to broaden and

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deepen their analysis of gender oppression. Pornography, they say, is "the graphic sexually explicit subordination" not only of women but also of men, children, or transsexuals, who are used "in the place of women." 109 Thus, depictions of homosexual rape as well as heterosexual rape are pornographic. In broadening and deepening analyses of gender oppression, however, feminists should be careful not to forget what was stated above, namely, that women's experiences, and therefore their thoughts, are mediated through their female bodies. By focusing on the female body both as the foundation of human community and as the recipient of much abuse, feminists can learn and have learned much about bodies in general: their power to create, their will to live, their vulnerability, their limits. Since the practice of medicine is not about disembodied selves but about embodied selves with pressing physical and psychological needs that only other embodied selves can meet, what many feminist bioethicists (especially, though not exclusively radical and cultural feminists) may have to offer the practice of medicine is an ontology that actually illuminates that practice. It is an ontology not of separateness but of connectedness, understood both in its negative and positive senses. Thus, for example, from a radical feminist viewpoint, Dimas's case is about pornography—about some people trying to reduce a human person into a "head in a bed" 110—and from a cultural feminist viewpoint, it is about reconstitution—about other people trying to restore a twenty-four-year-old man to a meaningful life by reconnecting him with his family and the outside world. In addition to offering medicine an ontology of connectedness and embodiment revealing medicine's acts of occupation as well as connection, feminist bioethicists challenge traditional bioethicists to consider whether they contribute to the malfunction of their own theories and principles by interpreting them through lenses smeared with the grime of sexism, racism, and classism. Trapped within conceptual as well as institutional structures of domination and subordination, autonomy can become the exercise of unreasonable demands in the name of exaggerated and egocentric "needs," 111 nonmaleficence the undertreatment of patients in the name of "futility," 112 beneficence the overtreatment of patients in the name of scientific expertise, 113 and justice the disguise for undemocratic modes of rationing in the name of the greater good.114 Unless bioethicists work toward eliminating their own as well as others' abuses of power, they risk losing their ability to see what is right and good. Worse, bioethicists risk becoming merely hired brains the powerful use to justify whatever policies or procedures suit them or the institutions they control. In bioethics there is always more than meets any one set of eyes or any one moral perspective. If bioethicists insist on ordering, disciplin-


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ing, and regulating all bioethical decision making under the command of one united ethical theory; or under the four lieutenants of autonomy, nonmaleficence, beneficence, and justice; or even under a variety of venerable paradigm cases, morality may gradually be displaced by law, or something very much like it.115 If bioethics does not want to become just a subfield of law—another rule, regulation, and policy generating enterprise—if it wants to continue to help vulnerable people work through complex moral issues of choice, control, and caring, it must make some changes. What feminist bioethicists have to offer traditional bioethicists, then, is a prescription for change. Admitting that they proceed from a particular point of view, not a universal "God's eye" view, feminists challenge traditional bioethics to reveal its own perspective(s). Embracing the plurality of women's voices and vision, feminists challenge traditional bioethics to acknowledge and embrace the plurality of human voices, male and female. Revealing, for better or worse, the essential nature of human connection and embodiment, feminists call upon traditional bioethicists to accept and work with this fact of life. Denial of perspective does not achieve neutrality; denial of plurality does not bring unity; denial of connection and embodiment does not achieve self-sufficiency for the rational, autonomous self. On the contrary: all that these denials achieve is a bioethics unable to respond to concrete human problems in anything but a detached, abstract manner. We do not need more policies dealing with any "agent X," but more hands-on approaches for communicating and connecting with each particular patient. After all, does bioethics retain any meaning if it wanders too far astray from the human beings it was designed to help? Do we want to risk reducing bioethics to an almost automatic, computer-like status: insert any problem, activate abstract theory, and out comes the answer? Feminists do not offer bioethics just another approach, just another set of pretty frames for the traditional lenses. Rather, they offer both the tradition and themselves the chance to regrind each others' lenses, thus producing a new set of spectacles—one able to get the human condition into proper perspective by focusing on particularly vulnerable human bodies, capable of pain and suffering, of connection and healing.

Notes Although the ideas in this essay are still in progress, they are much improved as a result of some of Susan M. Wolf's helpful insights. Editors of her caliber are a rare treasure. 1. Edmund D. Pellegrino, "The Metamorphosis of Medical Ethics: A ThirtyYear Retrospective," Journal of the American Medical Association 269 (1993): 115862, 1158.

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2. Ibid., 1161. 3. Ibid., 1158. 4. David DeGrazia, "Moving Forward in Bioethical Theory," Journal of Medicine and Philosophy 17 (1992): 511-39, 520. 5. Pellegrino, "The Metamorphosis of Medical Ethics," 1159. 6. Ibid., 1160. 7. Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 4th ed. (New York, NY: Oxford University Press, 1994), 14-26. 8. Pellegrino, "The Metamorphosis of Medical Ethics," 1160. 9. Ibid. 10. W. D. Ross, The Right and the Good (Oxford, England: Clarendon Press, 1930), 19. 11. Pellegrino, "The Metamorphosis of Medical Ethics," 1160. 12. K. Danner Clouser and Bernard Gert, "A Critique of Principlism," Journal of Medicine and Philosophy 15 (1990): 219-36, 222-23. 13. Ibid., 223. 14. Ibid., 233. 15. Ibid. 16. See, for example, Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning (Berkeley, CA: University of California Press, 1988), and Christopher W. Gowans, ed., Moral Dilemmas (New York, NY: Oxford University Press, 1987). 17. See, for example, Alasdair Maclntyre, After Virtue: A Study in Moral Theory (Notre Dame, IN: University of Notre Dame Press, 1981); Michael Sandel, Liberalism and the Limits of Justice (Cambridge, England: Cambridge University Press, 1982); Charles Taylor, Philosophical Papers (Cambridge, England: Cambridge University Press, 1989); Roberto Mangabeira Unger, Knowledge and Politics (New York, NY: Free Press, 1975); and Michael Walzer, Spheres of Justice: A Defense of Pluralism and Equality (New York, NY: Basic Books, 1983). 18. Pellegrino, "The Metamorphosis of Medical Ethics," 1161. 19. Beauchamp and Childress, Principles of Biomedical Ethics, 23. 20. DeGrazia points out that in Beauchamp and Childress's book (the third edition) there is a "quiet statement in a footnote" on p. 24. The footnote reads: By proposing the need for an external basis for justification in ethics, we do not embrace foundationalism in moral justification, in the sense of holding that moral theories are rooted in some ahistorical domain rather than in history and tradition. To the contrary, we would support (if we could develop the argument here) a robust historicism in preference to foundationalism.

DeGrazia, "Moving Forward in Bioethical Theory," 522. 21. Beauchamp and Childress, Principles of Biomedical Ethics, 31. 22. John D. Arras, "Common Law Morality," Hastings Center Report 20 (July/ Aug. 1990): 35-37, 35. 23. Albert R. Jonsen, "Casuistry as Methodology in Clinical Ethics," Theoretical Medicine 12 (1991): 295-307, 297. 24. A. S. Duncan, G. R. Dunstan, and R. B. Welbourn, eds., Dictionary of Medical Ethics (London, England: Darton, Longman, and Todd, 1977), 157. 25. Jonsen, "Casuistry as Methodology in Clinical Ethics," 306. 26. Maclntyre, After Virtue, 175. 27. Ibid. 28. See, for example, Howard Brody, Stories of Sickness (New Haven, CT: Yale University Press, 1987); Jean Cohen, "Discourse Ethics and Civil Society,"


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Philosophy and Social Criticism 14 (1988): 315-37; and Sally Gadow, "Body and Self: A Dialectic," Journal of Medicine and Philosophy 5 (1980): 172-85. 29. See, for example, Mary Briody Mahowald, An Idealistic Pragmatism (The Hague, Netherlands: Nijhoff, 1972). 30. Sally Gadow, "Nurse and Patient: The Caring Relationship," in Anne H. Bishop and John R. Scudder, Jr., eds., Caring, Curing, Coping: Nurse, Physician, Patient Relationships (Birmingham, AL: University of Alabama Press, 1985). 31. Mary B. Mahowald, "On Treatment of Myopia: Feminist Standpoint Theory and Bioethics," in this volume. 32. See, for example, Alison Jaggar, "Feminist Ethics: Some Issues for the Nineties," Journal of Social Philosophy 20 (1989): 91-107. 33. Betty A. Sichel, "Different Strains and Strands: Feminist Contributions to Ethical Theory," Newsletters on Feminism and Philosophy 90 (Winter 1991): 8692, 90. 34. Sandra Lee Bartky, Femininity and Domination: Studies in the Phenomenology of Oppression (New York, NY: Routledge, 1990), 99-119. 35. Rita C. Manning, Speaking from the Heart: A Feminist Perspective on Ethics (Lanham, MD: Rowman & Littlefield, 1992), 137-66. 36. Robin C. West, "Jurisprudence and Gender," University of Chicago Law Review 55 (1988): 1-72, 13. Among the thinkers West classifies as cultural feminists are Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley, CA: University of California Press, 1984), and Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982). 37. Manning, Speaking from the Heart, 137-66. 38. For a full discussion of a variety of feminist schools of thought, including existentialist and postmodern feminism, see, for example, Rosemarie Tong, Feminist Thought: A Comprehensive Introduction (Boulder, CO: Westview Press, 1989), and Alison M. Jaggar, Feminist Politics and Human Nature (Totowa, NJ: Rowman and Allanheld, 1983). 39. For a useful summary of developments in feminist ethics, see, for example, Alison M. Jaggar, "Feminist Ethics," in Lawrence C. Becker and Charlotte B. Becker, eds., Encyclopedia of Ethics, vol. 1 (New York, NY: Garland, 1992), 361-70. Among the most recent works in feminist bioethics are Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992); Mary Briody Mahowald, Women and Children in Health Care: An Unequal Majority (New York, NY: Oxford University Press, 1993); and Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992). 40. See, for example, Mary Wollstonecraft, A Vindication of the Rights of Women, Carol H. Poston, ed. (New York, NY: W. W. Norton, 1975); John Stuart Mill, Utilitarianism, on Liberty, and Essay on Bentham, Mary Warnock, ed. (New York, NY: New American Library, 1974); and Betty Friedan, The Feminine Mystique (New York, NY: Dell, 1974). 41. See, for example, Richard Schmitt, Introduction to Marx and Engels (Boulder, CO: Westview Press, 1987), and Michele Barrett, Women's Oppression Today (London, England: Verso, 1980). 42. Adrienne Rich, "Compulsory Heterosexuality and Lesbian Existence," Signs 5 (1980): 631-60, 648-49. 43. Nandor Fodor and Frank Gaynor, eds., Freud: Dictionary of Psychoanalysis (New York, NY: Philosophical Library, 1950), 19-20, 130, 138-39. 44. Nancy Chodorow, The Reproduction of Mothering (Berkeley, CA: Univer-

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sity of California Press, 1978), and Dorothy Dinnerstein, The Mermaid and the Minotaur: Sexual Arrangements and Human Malaise (New York, NY: Harper & Row, 1977). 45. Juliet Mitchell, Woman's Estate (New York, NY: Pantheon, 1971), 101. 46. Juliet Mitchell, Psychoanalysis and Feminism (New York, NY: Pantheon, 1974), 433. 47. Virginia Held, Rights and Goods: Justifying Social Action (New York, NY: Free Press, 1984), 4. 48. See, for example, Caroline Whitbeck, "A Different Reality: Feminist Ontology," in Ann Garry and Marilyn Pearsall, eds., Women, Knowledge, and Reality: Explorations in Feminist Philosophy (Boston, MA: Unwin Hyman, 1989), 51-76. 49. West, "Jurisprudence and Gender," 5-12. 50. See, for example, Alison M. Jaggar's critique of liberal feminist in Jaggar, Feminist Politics and Human Nature, 39-47. 51. It is important to note that not all liberal feminists stress women's sameness with men. Some liberal feminists who specialize in legal theory, for example, have raised concerns about so-called "sameness feminism." See Mary Joe Frug, Postmodern Legal Feminism (New York, NY: Routledge, 1991), ix-xxxv, 3-52. 52. West, "Jurisprudence and Gender," 3. 53. See, for example, Virginia Held, "Non-contractual Society: A Feminist View," in Marsha Hanen and Kai Nielsen, eds., Science, Morality and Feminist Theory (Calgary, Canada: University of Calgary Press, 1987), 111-37, 127. 54. West, "Jurisprudence and Gender," 29. 55. Ibid., 29-36. 56. For a full discussion of these and other related analyses, see, for example, Larry Kaplan and Rosemarie Tong, Controlling our Reproductive Destiny: A Technological and Philosophical Perspective (Cambridge, MA: MIT Press, 1994). 57. Lisa Belkin, "The High Cost of Living," New York Times Magazine, January 31, 1993, pp. 30-33, 40-46, 56-58. 58. Ibid., 32. 59. Ibid., 44. 60. Ibid., 58. 61. Ibid. 62. For a discussion about the problems both with confining health care rights to negative rights and expanding them to include positive rights, see, respectively, Amy Guttman, "For and Against Equal Access to Health Care," Milbank Quarterly 59 (1981): 542-60, and Robert M. Sade, "Medical Care as a Right: A Refutation," New England Journal of Medicine 285 (1971): 128892. 63. Belkin, "The High Cost of Living," 32. 64. Ibid., 33. 65. See, for example, Bartky, Femininity and Domination: Studies in the Phenomenology of Oppression, 99-119. 66. For some probing reflections on the power differentials between White/ Anglo women and Hispanic women, see Maria C. Lugones and Elizabeth V. Spelman, "Have We Got a Theory for You! Feminist Theory, Cultural Imperialism and the Demand for The Woman's Voice,'" in Aziah Y. al-Hibri and Margaret A. Simons, Hypatia Reborn: Essays in Feminist Philosophy (Bloomington, IN: Indiana University Press, 1990), 18-33. 67. Barbara J. Logue, "Taking Charge: Death Control as an Emergent Women's Issue," Women and Health 17 (1991): 97-121, 105. 68. Belkin, "The High Cost of Living," 46.


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69. Ibid., 56. 70. For an excellent discussion of when it is or is not morally permissible to give an individual special consideration, see Marilyn Friedman, "The Social Self and the Partiality Debates," in Claudia Card, ed., Feminist Ethics (Lawrence, KS: University of Kansas Press, 1991), 161-79. 71. Belkin, "The High Cost of Living," 44. 72. Noddings, Caring, 3. 73. In making this observation, I do not mean to suggest that these two lines of criticism would be directed against liberal, radical, and cultural feminists only. On the contrary, my belief is that they would be directed against almost any school of feminist thought. 74. The anthology Feminism/Postmodernism, edited by Linda J. Nicholson (New York, NY: Routledge, 1990) explores the validity of using gender as a category of analysis. 75. In fact, some critics have already done this. Typical is Jonathan Imber's book review in Times Literary Supplement, June 19, 1992, p. 9C. 76. Jaggar, "Feminist Ethics," 364. 77. Ibid., 363-64. 78. Some approaches to lesbian ethics may be an exception to this generalization. See, for example, Sarah Lucia Hoagland, Lesbian Ethics (Palo Alto, CA: Institute of Lesbian Studies, 1989), 8. 79. Virginia L. Warren, "Feminist Directions in Medical Ethics," Health Care Ethics Committee Forum 4 (1992): 19-35, 20-22. 80. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 60. See generally ibid., 58-75. 81. Ibid., 59-62. 82. Ibid., 62 83. Ibid., 58-75. 84. Ibid., 67. 85. Ibid., 69. 86. Foundationalism asserts that a belief is rational when it relates to a particular "set of propositions which constitute the foundations of what we believe." Critics of foundationalism, including anti- or postfoundationalists or postmodernists, rebuke the practice of having a single, unwavering standard by which all beliefs are measured or justified. For example, when gender is the "criterion which justifies a whole body of beliefs" and these beliefs are neither subject to amendment nor analysis by a criterion other than gender, antifoundationalists (such as Richard Rorty) reject those "biased" beliefs and attest that all criteria must be viewed in historical context and always be subject to amendment. Evan Simpson, ed., Anti-Foundationalism and Practical Reasoning (Edmonton, Alberta, Canada: Academic Printing and Publishing, 1987), 35. 87. Tong, Feminist Thought, 217. 88. Helene Cixous, "Sorties," in Helene Cixous and Catherine Clement, eds., The Newly Born Woman (Minneapolis, MN: University of Minnesota Press, 1986), 63-132, 63, 65. 89. I have inserted "maleness" as a clarifier. 90. Cited in Helene Vivienne Wenzel, "The Text as Body/Politics: An Appreciation of Monique Wittig's Writings in Context," Feminist Studies 7 (1981): 264-87, 270-71. 91. For a better understanding of claims and counterclaims about "Woman's nature," see most of the essays in Nicholson, ed., Feminism/Postmodernism, especially Christine Di Stefano, "Dilemmas of Difference: Feminism, Modernity,

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and Postmodernism," 63-82, and Sandra Harding, "Feminism, Science, and the Anti-Enlightenment Critiques," 83-106. 92. Margaret Urban Walker, "Feminism, Ethics, and the Question of Theory," Hypatia 7 (Summer 1992): 23-38, 28. 93. Marilyn French, Beyond Power (New York, NY: Ballantine Books, 1985). 94. Marilyn Frye, "A Response to Lesbian Ethics: Why Ethics?" in Card, ed., Feminist Ethics, 52-59, 53. 95. Ibid., 55. 96. Walker, "Feminism, Ethics, and the Question of Theory," 32. 97. Ibid., 28. 98. Ibid., 32. 99. Ibid., 33. 100. Sandra Harding, The Science Question in Feminism (Ithaca, NY: Cornell University Press, 1986), 191. 101. See, for example, Jane Flax, "Postmodernism and Gender Relations in Feminist Theory," in Nicholson, ed., Feminism/Postmodernism, 39-62. 102. Di Stefano, "Dilemmas of Difference: Feminism, Modernity, and Postmodernism," 73-78. 103. Genevieve Lloyd, The Man of Reason: 'Male' and 'Female' in Western Philosophy (Minneapolis, MN: University of Minnesota Press, 1984), 105. 104. Mahowald, "On Treatment of Myopia: Feminist Standpoint Theory and Bioethics." 105. See, for example, Rosemarie Tong, Feminine and Feminist Ethics (Belmont, CA: Wadsworth, 1993), 49-79. 106. Jaggar, Feminist Politics and Human Nature, 40-42. 107. See, for example, Margaret A. Farley, "Feminist Theology and Bioethics," in Earl E. Shelp, ed., Theology and Bioethics: Exploring the Foundations and Frontiers (Boston, MA: D. Reidel, 1985), 163-85, 170-72. 108. See, for example, Sherwin, No Longer Patient, 13-34. 109. Catharine A. MacKinnon and Andrea Dworkin, Ordinance Amending Chapters 139 and 148, Minneapolis Code of Ordinances Relating to Civil Rights (Minneapolis, MN, December 30, 1983). 110. Belkin, "The High Cost of Living," 132. 111. John F. Kilner, Who Lives? Who Dies?: Ethical Criteria in Patient Selection (New Haven, CT: Yale University Press, 1990), 116. 112. Edward R. Grant, "Medical Futility: Legal and Ethical Aspects," Law, Medicine & Health Care 20 (1992): 330-35. 113. Larry R. Churchill, Rationing Health Care in America: Perceptions and Principles of Justice (Notre Dame, IN: University of Notre Dame Press, 1987), 16-17. 114. Whereas I consider "rationing at the bedside" largely undemocratic, I view more public participation in rationing decisions as very democratic. See Alexander Morgan Capron, "Oregon's Disability: Principles or Politics," Hastings Center Report 22 (Nov.-Dec. 1992): 18-20. 115. William Ruddick, "Medical Ethics," in Becker and Becker, eds., Encyclopedia of Ethics, vol. 2 (New York, NY: Garland, 1992), 778-81.

3 On Treatment of Myopia: Feminist Standpoint Theory and Bioethics Mary B. Mahowald

The insights of feminist standpoint theory provide a corrective to the nearsightedness, unselfconsciousness, and arrogance that arise in health care and in bioethics, as in other areas of life and work. A feminist standpoint is one that reflects the perspectives of women while challenging the social dominance of men's perspectives. Feminist standpoint theory refers to the rationale that supports that standpoint and strategies for implementing it.1 Although my account focuses on sexism, similar arguments apply to racism and classism, and there is obvious overlap in these applications. The common element is that the differences between groups are the grounds by which one group obtains or maintains advantages or power over another. In defense of inequality or injustice, irrelevant differences may be invoked or relevant differences overlooked. From a feminist standpoint, 2 the ethical criterion for determining the relevance of differences between women and men is gender justice or equality.3 In what follows I point out flaws in contemporary health care and bioethics that indicate the need for a feminist standpoint. After examining the meaning of this standpoint as related not only to women but to other nondominant groups, I argue that its underlying theory should be extended beyond groups to individuals. Next I consider

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ways in which attention to relationships and context in health care reinforce an expanded version of feminist standpoint theory. Since a care-based ethic supports this extension but may raise problems regarding gender justice, I argue further for a view of care and justice as compatible. The ethical and epistemological strengths of standpoint theory are illustrated through a case that reveals one physician's view of her relationship with patients. As a means of promoting gender justice in health care and bioethics, I conclude with a proposal for utilizing feminist standpoint theory on an ongoing basis.

Some Flaws in Contemporary Health Care and Bioethics Nearsightedness, unselfconsciousness, and arrogance are related flaws, each reinforcing a natural tendency to construe one's partial perspective as the full picture. By nearsightedness, I mean that none of us, as finite, situated individuals, can see all of the parameters of the decisions we make. This limitation says something positive as well as negative. It allows that we at least see what is near, even though we cannot see what is beyond our range of vision, including the longrange implications of our decisions. To some degree, nearsightedness is encouraged within health care. Medical specialization and hierarchical (usually patriarchal) distribution of roles increase the propensity to limited vision. Beyond the maximization of health expertise that specialization facilitates, the choice of specialties is often motivated by the higher status of those who focus narrowly on a particular area of medicine. Generalists tend to be less rewarded by income and prestige than their specialist counterparts. Nearsightedness is also encouraged whenever the practitioner's obligations are defined exclusively in terms of the patient or client, ignoring the ripple effect that such decisions have on others. Bioethicists are nearsighted too. Some view bioethical issues solely from their offices, classrooms, and lecture halls, maintaining their distance from the clinical settings in which the actual issues arise. While some are experts in areas on which their work relies, such as metaethics, ethical theory, medical science, clinical skills, and social science, they cannot be experts in all of these areas. Nearsightedness is also evident in the overall failure of bioethicists to attend to the ethical problems raised by racism, classism, and sexism, including heterosexism. Moreover, those who work in medical schools and hospitals may be co-opted by the values and priorities of the institutions that employ them. Such co-optation suggests the nearsightedness that William James referred to as "a certain blindness" regarding other values and priorities.4

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Unselfconsciousness is used here to mean the lack of a sense of one's limitations. Some unselfconscious persons assume themselves capable of "point-of-viewlessness," defining their particular views as universal.5 In contrast, a self-conscious person acknowledges her weaknesses as well as strengths, and acts accordingly. Like Socrates in the Apology,6 the self-conscious person is anxious to avoid having others falsely attribute expertise to her. Socratic wisdom, and the imparting of that wisdom, necessarily includes knowledge of one's own ignorance. In areas of health care that emphasize treating the whole person or even the entire family, such as primary care medicine, family practice, nursing, and social work, there is sometimes a tendency to ignore or forget one's limitations. The clinician may then attempt the god-like feat of single-handedly providing for all of her patient's needs, without drawing on the more focused expertise of others whose involvement might improve her care. Similarly, health care specialists sometimes pass judgment unselfconsciously on areas of health care about which they have relatively little knowledge in comparison with those practicing in those areas— for example, doctors vis-a-vis nurses, or surgeons vis-a-vis psychiatrists. One group may assert authority over the other, while ignoring the fact that they lack the experience and training of the other. This point applies also to clinicians who are ethicists. Although they may provide ethics consultations at the bedside, their clinical specialization limits the extent to which their clinical advice is appropriate for patients who require treatment by other specialists. Patient care, in all of its complex clinical, social, and ethical dimensions, cannot be optimized without the collaboration of those who are optimally qualified for different aspects of its provision. Titles, positions, social attitudes, and publicity often promote unselfconsciousness. The public sometimes associates leadership in any area of medicine or philosophy with expertise on ethical issues relevant to medicine. Accordingly, a leader in a particular area of medicine or philosophy may be invited to speak or write on ethical issues about which others have broader and more critical knowledge. If she is selfconscious about her limitation, she will defer to those others, or at least call on them and credit them for their input. If she is unselfconscious, she may accept such invitations under false pretenses regarding her expertise. A lack of self-consciousness is evident in bioethicists who critique clinical judgments without recognition that noninvolvment in the clinical setting may reduce the validity of their critique. It is also observable in philosophers who insist that practitioners are ill equipped to "do" ethics because ethics is philosophy, and only those trained in philosophy can philosophize. Conversely, the unselfconscious practitioner may argue that "these ivory tower types" don't know what it's like in

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the real world of clinical medicine, dismissing the critical insights and analyses of philosophy on that basis.7 While unselfconsciousness ignores limitations, arrogance exaggerates strengths. To some, medicine presents a context in which arrogance serves a useful purpose. Consider, for example, the routine behavior of surgeons. To cut into a human body, to manipulate and remove organs, to place other organs and devices into the body—possibly these procedures could only be done by someone who is arrogant. Moreover, just because invasiveness is overt does not mean that it is more drastic than covert interventions. Psychotherapy, for example, may be more invasive than surgery because it affects people's minds rather than their bodies.8 In both contexts, arrogance may be necessary for therapeutic effectiveness. Arrogance may also be both essential and problematic in nonmedical specialties or professions such as teaching and politics. Rightly or wrongly, bioethicists who are not clinicians may be just as arrogant as those who are. The dictionary offers "pride" as a synonym for "arrogance." Pride is sometimes construed as a good thing, and only bad if it constitutes a false assessment of the facts. When it is construed in the latter way, pride is purportedly the principal sin of humankind. As Valerie Saiving maintains, however, the principal sin of women is not pride but "underdevelopment or negation of the self."9 To be truthful about one's strengths along with one's weaknesses is a form of humility. The arrogance to be avoided involves denial of one's limitations, leading to expressions of power that place others at risk. It is not only possible but crucial for health care practitioners and bioethicists to avoid this kind of arrogance. To some extent, nearsightedness, unselfconsciousness, and arrogance are inevitable in human life. It is possible and desirable, however, to reduce their negative implications through standpoint theory. Standpoint theory is based on recognition that each one's point of view, expertise, and authority are situated and partial. It implies the need for attention to views that are often neglected, such as those of women. A feminist standpoint serves as a corrective to the overall neglect of women's interests, experience, and insights in contemporary health care and bioethics.

Standpoint Theory and a Feminist Standpoint The term "standpoint" has been broadly used to define any perspectival view of the world. Classical pragmatists such as William James insisted that human knowledge is unavoidably perspectival.10 In light of human "fallibilism," Charles Sanders Peirce argued for collaborative inquiry, based on scientific method, in order to maximize our potential

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for ascertaining truth. But what we actually achieve through this maximizing method is neither truth nor knowledge but "belief," defined by Peirce as a plan or habit of action.12 Like Thomas Aquinas, he distinguished between truth as reality and the "truth" that human beings discover in their search for knowledge.13 Truth as known and knowable is inevitably partial, but not relative. Although we cannot achieve omniscience, we can minimize our errors or mistakes through collaboration. In contrast to the pragmatists, most modern philosophers have maintained that universalizability and impartiality are not only achievable but essential to ethical judgment. Thomas Nagel, for example, distinguishes between a personal and impersonal standpoint, arguing that the latter is indispensable to ethics.14 "Ethics and political theory," he writes, "begin when from the impersonal standpoint we focus on the raw data provided by the individual desires, interests, projects, attachments, allegiances and plans of life that define the personal points of view of the multitude of distinct individuals, ourselves included." 15 For Nagel, an impersonal standpoint is achieved through a process of abstraction that critics such as Donna Haraway consider neither feasible nor desirable. Haraway affirms the "embodied nature of all vision" against the pretense of objectivity that denies the situatedness of human experience.16 Although the term "standpoint" generally refers to a particular position from which something is viewed, the concept of an impersonal standpoint suggests the "god trick of seeing everything from nowhere." 17 The proposal of an impersonal standpoint is ethically as well as epistemologically problematic because definers of the standpoint—usually the dominant group—attempt to impose their partial vision on others by proclaiming its universal applicability. Haraway's alternative is "a doctrine of embodied objectivity," which involves "partial, locatable, critical knowledges sustaining the possibility of webs of connections called solidarity in politics and shared conversations in epistemology."18 Only though such partial perspectives, she claims, can we approach objectivity. Haraway defends her proposal against the anticipated charge of relativism by pointing out that, like the concept of an impersonal standpoint, "relativism is a way of being nowhere while claiming to be everywhere equally." 19 Clearly, her concept of "situated knowledges" does not conform to this definition of relativism. The difference between partial knowledge and relativism supports the epistemological validity of standpoint theory. Feminism, in all of its diverse manifestations, has an even stronger refutation of relativism, namely, its insistence on gender equality as an objective, universalizable ethical norm. As Susan Sherwin puts it, even if feminists remain relativist on other moral matters, they remain "absolutist on the question of the moral wrong of oppression." 20

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Feminist standpoint theory is based not only on the notion that human knowledge derives from situated perspectives, but also on the realization that some perspectives are privileged in comparison with others. Because the dominant group generally defines and evaluates the world according to its own limited perspective, the only possibility for expanding and correcting that view is through the standpoints of those who are dominated. Accordingly, Sara Ruddick defines "standpoint" as "an engaged vision of the world opposed and superior to dominant ways of thinking."21 Positing the roots of a feminist standpoint in the experience and activity of mothering, she develops a concept of "maternal thinking" that is applicable to men as well as women. Maternal thinkers do "maternal work" through preservative love, nurturance, and training of others. This work necessarily involves resistance to the spirit and practice of militarism, which impedes the growth and development of oppressed or vulnerable people.22 Ruddick credits Nancy Hartsock with the development of her feminist standpoint. 23 For Hartsock, that standpoint consists of the following related claims: 1. Material life or social position "structures . . . [and] limits . . . [our] understanding of social relations." 2. When "material life is structured in fundamentally opposing ways for two different groups, . . . the vision of each . . . represent[s] an inversion of the other," and both visions are partial. 3. "The vision of the ruling . . . [group] structures the material relations in which all parties . . . participate. . . . " 4. "In consequence, the vision available to the . . . [dominated] group . . . represents an achievement that requires" the ability to see beneath the surface of the oppressive social relations and the education that derives from political struggle. 5. "As an engaged vision, the . . . [standpoint] of the oppressed exposes" the dehumanizing aspects of existing relations among human beings, "points beyond the present, and carries a historically liberatory role." 24 The fourth and fifth of Hartsock's claims explain why a standpoint vision of the world may be regarded as superior to the dominant view. Dominant ways of thinking inevitably restrict one's vision; standpoint makes possible a vision beyond the present, enabling the oppressed to liberate themselves. These claims are supported not only by Marxist or socialist versions of feminism, but also by radical feminism. As Haraway observes, "the standpoints of the subjugated are not 'innocent' positions. On the contrary, they are preferred because in principle they


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are least likely to allow denial of the critical and interpretive core of all knowledge." 25 The standpoints of subjugated groups thus provide a corrective lens for the myopia of the dominant group. While Hartsock's and Haraway's claims are valid and useful, they do not go far enough because they do not deal with the inevitable gap between the standpoint of a group and the standpoint of an individual. Hartsock acknowledges that her delineation of a feminist standpoint assumes commonalities among women despite their cultural, class, and racial differences. 26 Feminist standpoint theory thus construed cannot adequately reflect all of the standpoints of individual women, who, after all, are distinguishable also by size, age, politics, religion, sexual orientation, and multiple other factors. Like men, women are unique in the compilation of standpoints that each embodies.

Extending Feminist Standpoint Hartsock also acknowledges the difference between a feminist standpoint and women's standpoint, choosing the former term because "women's experience and activity as a dominated group contains both negative and positive aspects." She characterizes a feminist standpoint as one that "picks out and amplifies the liberatory possibilities contained in that experience." 27 But her account of a feminist standpoint need not exclude women's standpoint, if the former is amended to accommodate the diversity of women as individuals and as members of other groups besides those defined by sex or gender. This extension of feminist standpoint theory from groups to individuals is consistent with most versions of feminism because of their common emphasis on attention to context and relationships, and their critique of gender roles, stereotypically conceived. The emphasis on context and relationships necessarily involves attention to the variety of relationships that individual women bear to others and others to them, as well as the relationship between women and men as distinct social groups. While insisting on the importance of relationships that women alone have to others (e.g., pregnancy, motherhood), an expanded version of feminist standpoint theory maintains a critical attitude toward relationships and roles that support the subordination of women to men, whether as individuals or as a group. A sign that contemporary feminist scholarship is self-conscious (as I believe other areas of male-dominated scholarship are not) is its insistence on careful, critical consideration of the diversity of women's experience. There is broad recognition among feminists that major morally and politically relevant differences are present among women from different cultures, races, and classes. Maria Lugones and Elizabeth

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Spelman, among others, offer compelling arguments for paying attention to these differences. 28 But taking account of cultural, racial, and class differences can also involve generalizations that ignore significant differences among women belonging to the same culture, race, and class. Lesbian women, for example, are often overlooked by those who catalogue cultural, racial, and class differences. "Lesbians," as Marilyn Frye puts it, "are outside the conceptual scheme."29 On several occasions, when I have raised the issue of artificial insemination of lesbian women to health practitioners, I have seen what Frye means: an apparent inability to conceive of a lesbian woman as an infertility patient.30 Another example is the prevalent assumption that religious affiliation determines an individual's ethical stand on specific issues. How many times have I heard: "She's Catholic, so she doesn't want an abortion." The assumption belies data showing that Catholics are as likely to obtain an abortion as other women.31 Taking account of differences among women also means taking account of different versions of feminism. Alison Jaggar suggests that consideration of women's "standpoint" may provide a criterion for evaluating different feminist theories.32 For Jaggar, the "socialist feminist concept of the standpoint of women" is crucial to such evaluation.33 Among versions of feminism, however, postmodern feminism is most strongly supportive of an extension of feminist standpoint to individuals.34 For postmodern feminists, the privileged standpoint of women is borrowed from Simone de Beauvoir's category of otherness, which they extol rather than reject.35 As Rosemarie Tong puts it, The condition of otherness enables women to stand back and criticize the norms, values, and practices that the dominant culture (patriarchy) seeks to impose on everyone, including those who live on its periphery—in this case, women. Thus, Otherness, for all of its associations with oppression and inferiority, is much more than an oppressed, inferior condition. Rather, it is a way of being, thinking, and speaking that allows for openness, plurality, diversity, and difference. 36

For de Beauvoir, the category of otherness applies to women as a group. For postmodern feminists, it applies to individuals as well. Through its link with deconstruction, postmodern feminism is antiessentialist. This involves a rejection not only of universal definitions, but also of traditional male-defined boundaries between reason and emotion, beautiful and ugly, self and other, and between disciplines such as art, biology, and psychology. So radical a critique raises enormous epistemological and communicative problems. In their critique of language, some postmodernists


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even reject the term "feminism." Yet their views are profoundly feminist in that they propose for women the most fundamental liberation of all: "freedom from oppressive thought." 37 Individual women, after all, cannot be adequately defined by the thoughts of others, even when the others are feminists. Taking account of differences between individuals as well as groups means proceeding on two tracks at once. We pay attention to the actual standpoints of individuals, but we also look for patterns of oppression or domination in different groups, in order to identify and rectify systemic injustice or exploitation. Sandra Harding recognizes the tension that occurs when the standpoint of an individual is at odds with that of a group with which she is identified. She maintains, however, that this "apparent tension in feminist thought is simply one we should learn to live with." 38 On both tracks, women's experience is the starting point of the critique.

Feminist Standpoint and Attention to Relationships and Context An expanded version of feminist standpoint theory is reinforced by the attention that contemporary bioethics has directed to relationships and context. In health care as in other areas, relationships are often discussed in the context of roles. The dominant and dominating role of the paternalistic physician is often cited, but dominant and dominated roles abound within the health care hierarchy. Historically, nurses have been seen and have even viewed themselves as handmaids of physicians, reflecting gender stereotypes.39 To the extent that standpoint theory has been incorporated into the health care system, nurses have enriched the epistemological base of clinical judgments. Nonetheless, hierarchical arrangements remain evident not only among the different health care professions, but also within each profession. Like society in general, health care reflects a patriarchal system. In various models of the physician-patient relationship, the doctor's dominant role is the vantage point from which the relationship is explained and assessed. Obviously, patients also play a role in the relationship, but they are often considered only as the assumed object of beneficence, or in the context of permitting them to exercise autonomy. Because patients are generally dominated by doctors, standpoint theory is indispensable to the reduction of nearsightedness, unselfconsciousness, and arrogance on the part of physicians. From a feminist standpoint, this is doubly important because the majority of patients are women and the majority of physicians are still men.40 None of the prevailing models of the physician-patient relationship41 reflects a feminist standpoint, that is, one that considers the ex-

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periences of women—whether as individuals, women in general, or members of other nondominant groups—as crucial to the analysis and assessment of that relationship. A feminist standpoint is crucial because it takes account of the embeddedness of the doctor-patient relationship in other relationships, whether these involve dominance or not. When feminist standpoint theory applies to individuals as well as groups, it also takes account, as traditional models of the physicianpatient relationship do not, of the mutuality of that relationship, acknowledging that physicians and patients alike have rights and responsibilities vis-a-vis each other. In their critique of traditional ethics, various versions of feminism insist on considerations of context, that is, the situatedness on which feminist standpoint theory relies. In health care, the consideration of context mainly takes the form of case-based analysis. The clinician's thinking and decision making are usually precipitated by an actual case that raises questions about treatment or nontreatment. The health caregiver attempts to optimize care of a particular patient with whom she has a special relationship that involves a special responsibility. Although the term "care" is often identified with treatment, the caregiver knows that this is sometimes a mistaken identity, that optimal care sometimes means that treatment should be foregone or withdrawn. Recently, Albert Jonsen and Stephen Toulmin have proposed a revival of casuistry as a method by which case-based analyses may be applied to bioethics. They affirm an extended version of feminist standpoint theory (without calling it that) when they write that "moral knowledge is essentially particular." 42 Not surprisingly, this method is broadly supported by clinical ethicists. Except for its neglect of broader social issues, it is also supported by feminist bioethicists.43 The feminist reservation about the adequacy of casuistry for clinical ethics is that its emphasis on cases provides too limited a sense of context.

The Meaning of Care and the Pitfalls of Care-Based Reasoning Taking account of the particularity of individual relationships through an extension of feminist standpoint theory not only shows consistency with the case-based reasoning of clinicians and clinical ethicists, but also with the care-based models of moral reasoning recently developed by Carol Gilligan and Nel Noddings. Both derive their understanding of care from an analysis of women's experience; both insist on the centrality of women's standpoint in women's own ethical judgment, but argue for its relevance to men as well. Gilligan, drawing on her studies of women facing unwanted pregnancy, defines a care ethic as con-


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cerned primarily with responsibilities that arise from attachment or ties to others, disregarding the impartiality that traditional ethics demands.44 Noddings distinguishes between natural and ethical caring, claiming the experience of motherhood as the paradigm for ethical behavior. Ethical caring means deliberate expression of the natural inclination of mothers to be engrossed in concerns about their children and to identify their children's interests with their own.45 Despite the emphasis on relationships and women's experience that Gilligan and Noddings elaborate, many feminists have been uneasy about the implications of their views. Women's standpoints, after all, are not always identical with a feminist standpoint. Just as nurses who define their primary responsibility as care for patients experience gender injustice in a patriarchal health care system, mothers who naturally and ethically define their primary responsibility as care for their children are often exploited by being deprived of opportunities equal to their male counterparts. The same is true for women who are the predominant caregivers of the disabled, the sick, and the elderly. Feminists are therefore concerned that those who champion a care-based ethic may reinforce the long-standing practice of exploiting women's natural propensity to care. Through its insistence on critique of the dominant standpoint, feminist standpoint theory attempts to preempt this injustice. It thus argues that considerations of gender justice be joined to those of a care ethic. One feminist who has argued persuasively for a necessary connection between care and justice is Marilyn Friedman. Her account further illustrates how feminist standpoint contributes to ethical theory and practice.46 Acknowledging that a gender difference in moral reasoning is empirically disputed, Friedman analyzes the implications of gender differences that are not in dispute. "Even if actual statistical differences in the moral reasoning of women and men cannot be confirmed," she writes, "there is nevertheless a real difference in the moral norms and values culturally associated with gender."47 This "real difference" leads to what Friedman calls a gender-based "division of moral labor," supported by stereotypically defined differences that may or may not be present in individuals. According to Friedman, the two categories of care and justice overlap, and if care is morally adequate, it involves justice in personal as well as professional relationships. Similarly, if justice means giving people their due, it demands determination of what constitutes due care for each. The application of this concept to health care is obvious: the health practitioner must recognize and respond to the different health needs of each patient. Discovery and treatment of such needs are impossible without attunement to the patient's standpoint as privileged epistemologically and ethically.

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Of necessity, just caring requires recognition of the link between health and the personal and societal conditions that influence health. For example, the prospects for successful treatment of insulin dependent diabetics, chronic dialysis patients, and organ transplant candidates are increased by the support the patient receives from relationships with friends and family. Medical crises that occur because of gunshot wounds, rape, wife-battering, drug addiction, and child abuse require treatment beyond that administered to the individual. From the vantage point of preventive medicine, what Friedman calls "care to the public domain" is crucial to the long-term recovery and maintenance of individual as well as social health. Health professionals have a special responsibility to exercise this kind of care by supporting societal change and programs that promote human health. Care in the public domain gives priority to justice-based reasoning, with equality and impartiality determining its practice toward individuals and groups. Care in personal and professional life involves recognition of the uniqueness of relationships, and partiality is a necessary part of care in both contexts. Thus Friedman's account of the compatibility of care and justice may be supplemented by a distinction between the public and professional domain. The just care that is appropriate for the health practitioner at the bedside gives priority to the particularity of that relationship, while the just care that is appropriate for the same professional in the voting booth is impartial or universal. If care is defined broadly enough to encompass justice, it is care in either domain, and if justice is defined broadly enough to accommodate the uniqueness of interpersonal and professional relationships, it is justice in either domain. Defining either locus more narrowly requires recognition that human beings live and act in both contexts, with different roles to play in each. The political context mainly involves the narrower concept of justice, while professional and personal contexts mainly involve the narrower concept of care. Only if the concepts of justice and care are construed broadly are they equally applicable to either context. At that point, neither care nor justice has priority; the two are interchangeable because each entails the other. To the feminist position that the personal is political, we might then add that the political is personal. Friedman proposes a model of friendship for ethical care.48 If friendship includes both justice and care, it may serve as an ethical ideal for familial as well as for other interpersonal and professional relationships. Developmentally, we learn to care from those who care for us, and in most instances that means friends as well as relatives. The "caring work" that predominates in women's lives occurs in situations in which relatives or nonrelatives regard each other as friends. According to Ruddick, this "caring work" underlies a feminist standpoint.49


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But is care in the health setting equivalent to the caring described by Gilligan, Noddings, and Ruddick? For all three authors the meaning of care derives from women's experience of caring. Maternal thinking is care-based because its defining feature is a natural inclination to care for one's child. The thinking involved in this process is particular, partial, and practical.50 It aims to foster the development of another as a unique individual. Just as a woman first becomes a biological mother by pushing her baby out of her body, so the caring labor of maternal thinking (no matter who undertakes it) consists of pushing people toward independence through fulfillment of their own potential. Similarly, the goal of health care is to render the caregiver unnecessary. If the care provided in the health setting has this goal, it is consistent with the care described by Gilligan, Noddings, and Ruddick. Unfortunately, however, care in the health setting is often equated with treatment, and treatment is not necessarily caring. It is not caring if it ignores or impedes the thrust toward self-differentiation epitomized in childbirth, which is biologically and psychologically natural in human beings. It is not caring if it fails to respect and support the uniqueness of the other that a loving parental relationship exemplifies. In other words, caring essentially involves attention to differences, whether these apply to groups or individuals.51 An extension of feminist standpoint theory obviously supports this interpretation of caring.

An Illustrative Case As already suggested, the reasons for extending standpoint theory to individuals are epistemological and ethical. To illustrate this in the context of health care, consider the following case:52 AI Brown is a seventy-three-year-old man with cerebral palsy and severe spastic paralysis in all four limbs. He was admitted to a dependent care facility forty years ago and has lived there ever since. Despite his significant physical impairment and need for assistance with basic life functions, he is cognitively intact. Several years ago, Mr. Brown was given phenobarbitol for treatment of a seizure disorder. When the threat of seizures subsided, he continued to receive 60 milligrams of phenobarbitol four times a day. Now, each time a new pharmacist or physician is assigned to his unit, phenobarbitol levels are drawn. These invariably run in the 50s in micrograms per milliliter, suggesting to clinicians that his dosage should be reduced. Mr. Brown objects to the reduction, stating that he is doing fine, has not had any seizures, and "always gets messed up when people fool around with my medications." Dr. Ann Joseph, the attending physician for the unit, has a some-

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what novel view of her patients and their claims on her. She calls them "customers," and assumes that "the customer is always right" when there is any medical doubt about treatment or nontreatment. Although Dr. Joseph has explained to Mr. Brown the risks reported in the medical literature regarding his level of phenobarbitol, he insists, and she agrees, that these are statistical risks that may not apply to him. He says he feels well with the 60 milligram dosage and poorly whenever the dosage is lowered. Dr. Joseph regards his view as privileged and instructs the house staff not to reduce the "customer's" phenobarbitol level. Although clinical texts do not support Mr. Brown's phenobarbitol dosage, Dr. Joseph recognizes that her patient has a uniquely valid standpoint from which to judge whether its administration hurts or helps him. She thus not only respects his autonomy but credits him with knowledge about his own condition that textbooks, articles, or even experience with other patients cannot provide. In other words, she recognizes her own nearsightedness, even when her vision is improved by input from colleagues; self-conscious about her own limitations, she avoids arrogance. As a patient, Mr. Brown belongs to a dominated group. By gender Dr. Joseph belongs to a dominated group, but by profession she belongs to a dominant group. While dominant in her relationship with Mr. Brown, she realizes that his standpoint constitutes "an engaged vision of the world opposed and superior to dominant ways of thinking." 53 Perhaps it is no accident that Dr. Joseph (whose name I have changed here) is a woman. Recent studies indicate that female physicians spend more time than their male counterparts listening to patients.54 With Ruddick, I believe it is possible and preferable for men as well as women to be "maternal thinkers," and with Gilligan and Noddings I believe it possible and preferable for men as well as women to be both care-reasoners and justice-reasoners. But if care for others involves attention to individual differences, the data obtained by Gilligan and her colleagues suggest that women are more likely than men to incorporate an extended version of standpoint theory into their moral, political, and professional judgments. Care as defined by Dr. Joseph goes beyond the maxim of clinical practice: "When in doubt, look at the patient." She recognizes not only the limitations of theoretical knowledge but also the privileged status of patients' experience and knowledge of their own illness. Care of patients, for Dr. Joseph, involves the dictum: "Listen to the customer." Standpoint-based judgments may be more prevalent among women than men because women already belong to a group whose standpoint has been neglected throughout history. They are therefore more likely


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to challenge what Catharine MacKinnon calls "masculine partiality," the presumption of objectivity and universality that men have generally attributed to their limited knowledge and experience of the world.55 Sometimes the presumption is overt; sometimes it is covert. Women themselves often support the presumption. It is not difficult to understand why many women accept masculine partiality as definitive. Having been socialized in a sexist culture, the wonder is that there are so many women and men who challenge it. Even among those who reject the presumption, the self-consciousness implicit in feminist standpoint theory is sometimes lacking. Consider, for example, the current tendency to use gender-neutral language in addressing various topics in health care and bioethics. Even beyond reproduction, many issues are not gender-neutral. These include the health implications of the feminization of poverty, the problem of battered women, the high incidence of women who suffer from eating disorders and of those who subject themselves to health risks for the sake of appearance.56 Recent articles on the Human Genome Project address the entire range of ethical and social questions raised by the project in gender-neutral language.57 Yet it is women alone who supply ova, gestate, and give birth, and who undergo prenatal diagnosis, pregnancy termination, and fetal therapies. It is mainly women, but need not be mainly women, who are targeted for genetic screening, who are primary caregivers of those who are genetically disabled, and who work in those areas of clinical genetics that are least rewarded.58 Clearly, then, the Human Genome Project is not gender-neutral in its implications. Such examples call for attention to differences between the genders rather than gender-neutrality. Inattention to gender differences allows the dominant group, whether deliberately or not, to exclude the nondominant group from the advantages that it enjoys. To promote equality in heath care, which presumably is a goal of bioethics as well as feminism, attention to nondominant standpoints is thus not only useful but necessary. But how can such attention be ensured or promoted? In closing I propose a modest strategy for implementing feminist standpoint theory.

Proportionate Representation as a Remedial Strategy In American society we are familiar with the concept and strategy of proportionate representation. Despite failures in implementing this strategy, it is potentially a means by which each individual exerts some influence in policy decisions that apply to everyone. At an earlier point in history, direct participation of citizens in town meetings offered a

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purer form of democracy than we have now; that model ceased to be operable when society became too large and complex for every competent adult to be directly involved in its governance. Proportionate representation remains a mechanism intended to ensure as much democracy as possible under the circumstances. Democratic process is considered a good not only because it maximizes the participation of individuals, but also because it manifests equal regard for each one's participation. Even within a system of equal voting rights, however, it is hardly true that each one's participation is, or is even considered, equal to everyone else's. A similar discrepancy is observable in health care, where the traditional paternalistic relationship of inequality between practitioner and patient prevails, and the income, prestige, and power of physicians is greater than those of other health practitioners.59 Since most physicians are white men, their dominance involves the dominance of race and gender as well. Feminist standpoint theory suggests that a means of countering the inevitable nearsightedness of the dominant class is to ensure that those who are not part of that class are included among the decision or policy makers. If such a strategy were implemented, the voices of women and minorities who disagree with those who are dominant would be heard in Institutional Review Boards and ethics committees at the local level, and in state and national commissions addressing health needs and health care ethics. They would also be heard as teachers of health practitioners, especially physicians and thus members of the dominant group, and as leaders or experts in health care and bioethical decision making. Recent meetings sponsored separately by the National Institutes of Health and The Hastings Center are steps in the direction of expanding the range of voices heard.60 Proportionate representation means inviting the input of people with whom members of the dominant class do not themselves identify, whose presence may reduce their level of comfort and whose views may challenge theirs. It also means that tokenism, such as having one woman or minority person on the committee, is not enough, particularly when the group's decisions disproportionately affect those who are not dominant. Truly proportionate representation extends beyond gender, race, and class to differences in sexual orientation, political orientation, physical abilities, and mental abilities. It extends beyond the decision making of formally established groups such as academic committees and centers to the informal contexts of health care teams and clinic management. 61 Ideally, proportional representation also takes account of the fact that the same individual many belong to both dominant and nondominant groups. For example, while I belong to the nondominant gender, I represent the dominant class, race, and sexual


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orientation. To be fully reflective of the engaged vision of the world that standpoint theory offers requires participation of all the nondominant counterparts to dominance. Accordingly, I ought to be selfconscious about the limitation of vision occasioned by my participation in dominant groups. Moreover, the requirement of proportionate representation is not satisfied by having a single individual represent several nondominant groups—unless her voice and vote are counted additionally for each of the groups she represents. Unfortunately, situations arise in which too few nondominant persons are available to provide proportionate representation. Sometimes the claim that there are too few is refutable, but sometimes it is not. Self-consciousness is then especially demanded of the dominant individuals who render the representation disproportionate. Minimally, such self-consciousness means acknowledgment of differences between dominant and dominated perspectives and efforts to learn about the latter. With regard to gender differences, it means acknowledgment of a possible sexist bias even by those who consider themselves free of such bias. As Virginia Warren observes, "Sexist ethics would never appear sexist [even to the person practicing it]. It would be clothed in a cloak of neutrality because favoring some group or position would be unthinkable." 62 A similar observation applies to groups distinguishable by race and class, and often to those distinguishable by their mental or physical ability or sexual orientation. The postmodern insight regarding the inadequacy of categorizations is an important reminder that proportionate representation cannot entirely eliminate nearsightedness because nondominant persons are nearsighted also. Those of us who belong to the nondominant gender need to be self-conscious about this limitation, thereby avoiding or at least reducing arrogance. When we make decisions and formulate policies, our judgments remain fallible. Accordingly, from time to time we need to reconsider and revise our judgments in response to changing circumstances and new insights or critique. In health care and bioethics as in other areas of life, decisions and policies need to be developed by democratic means, inviting the standpoint of diverse individuals in order to maximize their ethical and epistemological validity. Because feminism is committed to equality and to the moral significance of women's experience, both collectively and individually, it supports this strategy for reducing the flaws of nearsightedness, unselfconsciousness, and arrogance. Because care involves ongoing recognition of the dynamic character of individuals and groups, and the complexity of their relationships, it demands attention to differences. The crucial contribution of feminist standpoint theory to bioethics is the egalitarian critique that it adds to that attention.

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Notes I wish to thank Elizabeth Guonjian, Laura Purdy, Mary Solberg, and Susan Wolf for their helpful comments on earlier versions of this chapter. Thanks too to Rosie Tong for her counsel and encouragement during its final revision. 1. Most of those who have written about feminist standpoint do not use the term "theory" in referring to its rationale or methodology. Some sources represent different versions of feminism, some write from and about a feminist perspective but do not use the term "standpoint," and some write about women's experience or perspective but not about feminism. For examples of all of these approaches, see Donna Haraway, "Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective," Feminist Studies 14 (1988): 575-99; Nancy C. M. Hartsock, Money, Sex, and Power: Toward a Feminist Historical Materialism (Boston, MA: Northeastern University Press, 1985), 232, and "The Feminist Standpoint: Devloping the Ground for a Specifically Feminist Historical Materialism," in Sandra Harding, ed., Feminism and Methodology: Social Science Issues (Bloomington, IN: Indiana University Press, 1987), 136-62; Dorothy E. Smith, "Women's Perspective as a Radical Critique of Sociology," in Harding, ed., Feminism and Methodology, 8596; Sara Ruddick, Maternal Thinking: Toward a Politics of Peace (New York, NY: Ballatine Books, 1989), 127-39; Nel Noddings, "Ethics from the Standpoint of Women," in Deborah L. Rhode, ed., Theoretical Perspectives on Sexual Difference (New Haven, CT: Yale University Press, 1990), 160-293; Catharine A. MacKinnon, "Feminism, Marxism, Method, and the State," in Harding, ed., Feminism and Methodology, 136-56; Terry Winant, "The Feminist Standpoint: A Matter of Language," Hypatia 2 (Winter 1987): 123-48; Alison M. Jaggar, Feminist Politics and Human Nature (Totowa, NJ: Rowman and Allanheld, 1983), 36971, 377-89. 2. Consider "a feminist standpoint" as equivalent to "the feminist standpoint" described by Hartsock and Winant, note 1, above. I prefer the indefinite article because it suggests that there is more than one feminist standpoint. While different versions of feminism concur in their opposition to the oppression of women, they offer different ways of explaining and rectifying the oppression. This leads to different feminist standpoints. To use a visual image, different feminist standpoints are different points of view located within the common locus in which all feminists stand. 3. I have developed a meaning of "equality" essential to a feminist standpoint in Women and Children in Health Care: An Unequal Majority (New York, NY: Oxford University Press, 1993). 4. See William James, in John J. McDermott, ed., The Writings of William James (New York, NY: Modern Library, 1968), 629-45. 5. Catharine MacKinnon used the term "point-of-viewlessness" to identify the standard that men have erroneously imputed to their view of the world. See MacKinnon, "Feminism, Marxism, Method, and the State," 137. 6. Recall Socrates's discovery of why the oracle of Delphi considered him wiser than the statesman, who instead was reputed to be wiser: "I am wiser than he is by only this trifle, that what I do not know I don't think I do." See W. H. D. Rouse, trans., Great Dialogues of Plato (New York, NY: Mentor Books, 1956), 427. 7. See my "Philosophy-Bashing and Ethicists in Medicine," APA Newsletter on Philosophy and Medicine 90 (1990): 6-8.


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8. While some surgical procedures affect the brain, even those may not affect the mind. 9. Valerie Saiving, "The Human Situation: A Feminine View," Journal of Religion 40 (1960): 100-12, 108. See also Judith Plaskow, Sex, Sin and Grace (Lanham, MD: University Press of America, 1980). 10. For example, see McDermott, ed., The Writings of William James, 629-45, 227-32, and 136-52. 11. See Justus Buchler, ed., Philosophical Writings of Peirce (New York, NY: Dover, 1955), 4, 38, 42-59, 160, 288, 356. 12. Ibid., 9-10, 28. 13. For example, Thomas Aquinas, Summa Theologiae, I, Question 16, "On Truth," especially First Article,"Whether Truth Resides Only in the Intellect." See Anton C. Pegis, ed., Basic Writings of Saint Thomas Aquinas, Vol. One (New York, NY: Random House, 1945), 168-70. But Peirce would use the term "belief" rather than "truth" for the resolution of inquiry. The term "truth," sometimes capitalized, was reserved for the culmination of an indefinitely extended inquiry by a community of investigators. 14. Thomas Nagel, Equality and Partiality (New York, NY: Oxford University Press, 1991), 10-20. 15. Ibid., 11. 16. Haraway, "Situated Knowledges," 581. 17. Ibid. 18. Ibid., 584. 19. Ibid. 20. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 75. 21. Ruddick, Maternal Thinking, 129. 22. Ibid., 126-51. 23. Ibid., 129. 24. Hartsock, Money, Sex, and Power, 232. Hartsock restated these claims in her "The Feminist Standpoint," 159-60. 25. Haraway, "Situated Knowledges," 584. 26. Hartsock, "The Feminist Standpoint," 163-64. 27. Hartsock, Money, Sex, and Power, 232. 28. Maria C. Lugones and Elizabeth V. Spelman, "Have We Got a Theory for You! Feminist Theory, Cultural Imperialism and the Demand for 'The Woman's Voice,'" Women's Studies International Forum 6 (1983): 573-81, and Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (Boston, MA: Beacon Press, 1988). 29. Marilyn Frye, The Politics of Reality: Essays in Feminist Theory (Trumansburg, NY: Crossing Press, 1983), 173. 30. For example, a reproductive endocrinologist who occasionally inseminated single (usually professional) women with donor sperm indicated he would never do so for a lesbian woman because he considered such a situation "goofy." It is possible, of course, that he had already inseminated lesbian women without knowing their sexual orientation. 31. See Stanley K. Henshaw and Jane Silverman, "The Characteristics and Prior Contraceptive Use of U.S. Abortion Patients," Family Planning Perspectives 20 (1988): 158-68. 32. Jaggar, Feminist Politics and Human Nature, 371. Jaggar realizes that the standpoint of individual women is not always feminist, but her socialist version of feminism supports inclusion of other women's standpoint as well.

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33. Ibid., 377. 34. For an excellent collection on postmodernism in relation to feminism, see Linda J. Nicholson, ed., Feminism/Postmodernism (New York, NY: Routledge, 1990). 35. See Simone de Beauvoir, "The Second Sex," in Mary Briody Mahowald, ed., Philosophy of Woman (Indianapolis, IN: Hackett, 1992), 82. 36. Rosemarie Tong, Feminist Thought: A Comprehensive Introduction (Boulder, CO: Westview Press, 1989), 219. 37. Ibid., 223. 38. Sandra Harding, The Science Question in Feminism (Ithaca, NY: Cornell University Press, 1986), 195. 39. Mary B. Mahowald, "Sex-Role Stereotypes in Medicine," Hypatia 2 (Summer 1987): 21-38. Thankfully, this view is rarely supported today. 40. Charlotte F. Muller, Health Care and Gender (New York, NY: Russell Sage Foundation, 1992), 7-10. 41. Various labels used for different models include paternalism, covenant, contract, business, beneficence-in-trust, friendship, and collaboration. See, for example, Edmund D. Pellegrino and David C. Thomasma, For the Patient's Good: The Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), 101-06; Melvin Konner, Medicine at the Crossroads (New York, NY: Pantheon, 1993), 3-27; Sherwin, No Longer Patient, 137-57; and Mahowald, Women and Children in Health Care, 28-32. The prevailing models include those that give priority to patient autonomy, to physician beneficence toward the patient, or to some combination of respect for patient autonomy and beneficence toward the patient. 42. Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning (Berkeley, CA: University of California Press, 1988), 330 (italics theirs). 43. For example, Sherwin, No Longer Patient, 78-80. 44. Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982), and "Moral Orientation and Moral Development," in Eva Feder Kittay and Diana T. Meyers, eds., Women and Moral Theory (Totowa, NJ: Rowman & Littlefield, 1987), 19-33. 45. Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley, CA: University of California Press, 1984), 16. 46. Marilyn Friedman, "Beyond Caring: The De-moralization of Gender," in Marsha Hanen and Kai Nielson, eds., Science, Morality and Feminist Theory (Calgary, Canada: University of Calgary Press, 1987), 87-110. See also Michael Stocker, "Duty and Friendship: Toward a Synthesis of Gilligan's Contrastive Moral Concepts," in Kittay and Meyers, eds., Women and Moral Theory, 56-58. 47. Friedman, "Beyond Caring," 89. 48. Marilyn Friedman, "Feminism and Modern Friendship: Dislocating the Community," Ethics 99 (1989): 275-90. 49. Ruddick, Maternal Thinking, 130. 50. I cannot here develop the relationship between particularism and partiality, but see Alan Gewirth, "Ethical Universalism and Particularism," Journal of Philosophy 85 (1988): 283-302, and Marilyn Friedman, "Partiality," in Lawrence C. Becker and Charlotte B. Becker, eds., Encyclopedia of Ethics, vol. 2 (New York, NY: Garland, 1992), 932-35. 51. Martha Minow, among others, has delineated the importance of attending to gender differences as a means of ensuring that care is maximized on a societal level. For example, see her Making All the Difference: Inclusion,


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Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990), 21619. But Minow does not elaborate the import of paying attention to individual differences among women. 52. While the clinical details of this case are accurate, I have changed irrelevant details (including names) to ensure confidentiality. 53. Ruddick, Maternal Thinking, 129. 54. Natalie Angier, "Bedside Manners Improve as More Women Enter Medicine," New York Times, June 21, 1992, sec. 4, p. 18. 55. Catharine A. MacKinnon, "Feminism, Marxism, Method, and the State: An Agenda for Theory," Signs 7 (1982): 515-44, 537. 56. Diagnostic and Statistical Manual of Mental Disorders, 3d ed. (Washington, DC: American Psychiatric Association, 1987), 66; Kathryn Morgan, "Women and the Knife, Cosmetic Surgery and the Colonization of Women's Bodies," Hypatia 6 (Fall 1991): 30; Ruth Sidel, Women and Children Last (New York, NY: Penguin Viking Books, 1986), 158. 57. Consider, for example, Andrea Bonnicksen's description of the options available after prenatal screening has detected an affected fetus: "the couple will either terminate the pregnancy ... or bear a child with the disease." See her "Genetic Diagnosis of Human Embryos," Hastings Center Report 22 (July-Aug. 1992): S5-11, S6 (my italics). But see also James D. Watson, "The Human Genome Project: Past, Present, and Future," Science 248 (1990): 44-48; Francis S. Collins, "Medical and Ethical Consequences of the Human Genome Project," Journal of Clinical Ethics 2 (1991): 260-67; and Thomas H. Murray, "The Human Genome Project and Genetic Testing: Ethical Implications," in The Genome, Ethics and the Law: A Report of a Conference on the Ethical and Legal Implications of Genetic Testing, Coolfont Conference Center, Berkeley Springs, West Virginia, June 14-16, 1991, AAAS Publication No. 92-115 (Washington, DC: American Association for the Advancement of Science, 1992), 49-78. 58. For example, women constitute 93.5 percent of masters' prepared genetic counselors. See Deborah F. Pencarinha, Nora K. Bell, Janice G. Edwards, and Robert G. Best, "Ethical Issues in Genetic Counseling: A Comparison of M.S. Counselor and Medical Geneticist Perspectives," Journal of Genetic Counseling 1 (1992): 19-30, 22. 59. Mahowald, "Sex-Role Stereotypes in Medicine," 22. 60. For example, in September 1991, NIH sponsored a meeting to plan an agenda for the study of women's health during the coming decade; in November 1991, NIH sponsored a meeting on reproductive genetics. Both meetings were predominantly attended by, and led by, women. Participants in the Hastings Center Project on Feminism and Bioethics were also predominantly women. 61. Although the term "health care team" refers to all of those involved in patient care, the team coach or captain is the attending physician, whose dominance, while justified in terms of his medical expertise, may be influenced also by other dominant but irrelevant factors such as race, gender, and class. 62. Virginia L. Warren, "Feminist Directions in Medical Ethics," Hypatia 4 (Summer 1989): 73-87, 74.

4 Reconstructing the Patient: Starting with Women of Color Dorothy E. Roberts

Feminists have powerfully demonstrated the limitations of modern medical ethics. By centering its inquiry on the conflict of general ethical propositions, much of the analysis in medical ethics has ignored who the patient is, who the physician is, and the effect of social arrangements in the larger society on their relationship. Medical ethics has neglected the experiences of women of color in particular, as well as the effect on ethical conflicts of a publicly supported setting. Both the methods and substantive norms of medical ethics have failed to address medicine's role in perpetuating inequalities of power in our society. One of feminism's main contributions to medical ethics is to add a political dimension to its analysis of moral issues. Feminist ethics refuses to overlook the role of social problems in ethical deliberations; rather, it identifies and criticizes the ways in which the practice of medicine contributes to oppression based on gender. This chapter extends the feminist critique of medical ethics by exploring the perspective of women of color. It is important to broaden medical ethics so that its substance and method includes these women. As a matter of justice, we should listen with heightened care to those whom institutional medicine has harmed the most, in order to compensate for their past exclusion. My project, however, reaches beyond supplementation: I seek affirmatively to take the perspective of poor women of color as part of a strategy for transforming bioethics and our health

Reconstructing the Patient: Starting with Women of Color

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care system. In other words, using the perspective of women of color will not just add on new propositions to current medical ethics; it will help to change its content and method. The heart of my argument is that because women of color experience the intersection of gender and racial oppression, they may have unique critical insights to offer mainstream feminist theory and practice, as well as bioethics. This experience of racism and sexism does not give all women of color an inherently oppositional stance. Yet it does profoundly affect their relationship to medical practice in a way that may encourage their opposition to its oppressive aspects. I base this claim on two propositions. First, I argue that the political dimension of the doctor-patient relationship is more apparent where the patient is a woman of color. Doctors treat these women differently than they treat their white female patients because of racism. In addition, these women are much more likely to receive their medical care in a public facility. Poor women of color have never enjoyed a private, protective relationship with their doctors. Second, I suggest that women of color may be more willing to resist medical domination. Because racism makes the oppressive use of medicine so obvious to many of them, women of color may be more suspicious of doctors' claims of beneficence. Denied the privileges of race and class, these women have the least to gain from the present institution of medicine and the most to gain from changing it. I claim that their perspective not only helps to identify what is wrong with the practice of medicine, but also to envision a better system. Thus the benefit of adding the perspective of poor women of color is creating not only a system that better meets their needs, but also a system that is better for everyone. My focus in this chapter is distinct from the question posed in an important project identifying and articulating African American perspectives on biomedical ethics: "What is it for a position on an ethical issue to reflect (involve) an ethnic perspective?" 1 I am not interested here in redefining the content of ethical norms according to the perspective of women of color. I do not argue that women of color have a common or unique moral viewpoint. My concern is primarily to identify how the perspective of poor women of color—their particular relationship to the institution of medicine—can uncover the way in which the practice of medicine, particularly the doctor-patient relationship, perpetuates hierarchies of power, can highlight women's forms of resistance to medical control, and can propose a vision for transforming medical ethics and the health care system. I begin this chapter with a background discussion of the construction of the patient in medical ethics and feminist ethics. Although both disciplines recognize a public aspect of medical practice, both largely view the doctor-patient relationship as a private matter. My aim is to show

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that doctors' "private" moral dilemmas involving their patients are actually interpreted and resolved according to relationships of power in the larger society. I explore the perspective of poor women of color by examining examples of three ethical conflicts involving the doctorpatient relationship. First, I examine the ethical mandate of preserving confidentiality in the context of physicians' role in recent punitive policies against women who use drugs during pregnancy. Second, I examine the United States Supreme Court's treatment of the requirement of truth-telling in its recent Rust v. Sullivan decision, upholding government regulations that banned abortion counseling in publicly funded clinics. Finally, I examine how doctors dismiss their moral duty to seek consent in the case of court-ordered cesarean sections. We can see the deficiencies of medical ethics in these examples' revelation of the way supposedly general ethical mandates crumble when the patient is a woman of color and in a public care setting. These law-related examples are useful in critiquing medical ethics because in each instance there are parallel legal and ethical debates, because ethical dilemmas are often ultimately resolved in court, and because legal discourse serves as a principal means of explaining and justifying our society's beliefs and practices. Although these examples all concern reproductive issues, they provide insights about the role of race, class, and gender in doctors' understanding of ethical norms that apply to the doctor-patient relationship more generally. I conclude this chapter by proposing some ways in which the perspective of women of color might inform a feminist reconstruction of the patient and our health care system. It is my hope that this critique of the doctor-patient relationship and call for attention to the perspective of poor women of color will be applied beyond medical ethics to research ethics and bioethics.

Reconstructing the Patient in Medical Ethics and Feminism When a senior physician asks an intern about his knowledge of "patients as human beings," the intern replies: "I cannot answer your questions. You're interested in patients, I'm interested in the disease in the body in the bed." 2 Most contemporary medical ethicists would reject the intern's view of his patients. Medical ethics has reconstructed the patient from a diseased body to a whole person with values, preferences, and a past. A discipline of medical ethics has assumed that there is a set of moral principles that inform and connect the wide range of dilemmas that arise in the practice of medicine.3 More recently, however, there has been a debate about the role of principles.4 It is clear


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that moral questions raised by the case of a particular patient cannot be answered solely by resort to abstract ethical principles; the answers depend on the details of the case.5 The debate seems to center largely on how to move properly between the facts of the case and more general values, principles, and even theory. However, there is wide agreement that physicians can successfully care for patients only by considering much more about them than the pathophysiology of their illness, including their own values and relationships. Eric J. Cassell therefore urges doctors to know more about their patients.6 Although modern medical ethics takes into account this personal and contextual information about the patient, its inquiry is generally limited. Much of the analysis in modern medical ethics has centered on moral dilemmas that arise within the boundaries of the doctor-patient relationship, where dilemmas are perceived as a conflict of general ethical principles, values, or norms as they operate in a case. The resolution of these dilemmas essentially depends on the ethical propositions themselves, without considering who the patient is, who the physician is, and the effect of social arrangements in the larger society on their relationship. Medical ethicists may recognize that doctors are influenced by social prejudices, but this is considered to be simply a distortion that should be corrected in doctors' quest to apply the principles to their practice. "Physicians are subject to the same social constraints as others, but must learn from their training and experience to overcome them in the service of the sick."7 Thus, much of medical ethics proceeds by overlooking social problems and envisioning a generic physician who should resolve questions involving a generic patient by using general ethical notions. One important contribution of feminism to medical ethics is to refuse to isolate social problems, specifically oppression on the basis of gender. Thus, feminism recovers the political dimensions of its analysis of moral issues, examining the role of relationships of power in the wider society. Susan Sherwin illuminates this contribution by comparing the meaning of context in feminist ethics and medical ethics.8 Both disciplines reject the adequacy of abstract moral reasoning by itself, recognizing the importance of attending to context when resolving an ethical dilemma. Both also criticize the assumption that "the role of ethics is to clarify obligations among individuals who are viewed as paradigmatically equal, independent, rational, and autonomous." 9 Rather, medical ethics and feminism recognize that doctor and patient share a relationship of unequal power. Doctors have the power to dominate interactions with their patients because illness may weaken the patient's capacity to decide, because doctors have superior knowledge relevant to medical decisions, and because society vests doctors with a great deal of authority over medical decision making. 10

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Feminist ethics and medical ethics differ significantly, however, in the sort of contextual details they consider relevant to ethical deliberations. Sherwin points to the political dimension of feminism as the critical difference: feminist ethics identifies and criticizes the ways in which the practice of medicine serves to maintain social hierarchies based on gender. Feminism adds to medical ethics the exploration of both medicine and bioethics as instruments of gender oppression. It also expands the scope of bioethics to include social issues heretofore considered irrelevant to ethical medical practice, such as the oppressive effect of ascriptions of illness to menstruation, pregnancy, menopause, and other aspects of women's lives; medical constructions of sexuality; and the health care system's role in perpetuating an unequal social order.11 In this chapter, I will expand this feminist critique of medical ethics to include the perspective of poor women of color. Their perspective has the advantage of clarifying the intersection of race, class, and gender in the practice of medicine and highlighting the possibility of women's resistance to medical domination. I explore their perspective in the context of the doctor-patient relationship.

The Public and Private Spheres of Medicine Modern medical ethics has viewed the doctor-patient relationship as largely a private realm. The discourse of medical ethics has maintained a public-private dichotomy, even when recognizing that medical ethics raises public issues. Medical ethics has regarded its "public" aspect as the domain that involves larger social issues that cannot be resolved by an individual physician treating an individual patient. Public bioethics thus concerns such issues as the allocation of medical resources throughout society, the structure of the health care delivery system, health care financing, public health expenditures, and organ donation. The questions concerning medical ethicists who study doctor-patient interaction, on the other hand, relate to allocating the authority to make medical decisions between two private actors. The usual method suggested for improving their interaction is to make physicians more sensitive to ethical requirements of beneficence and respect for patient autonomy.12 This public/private dichotomy is described, for example, by Troyen Brennan in his portrayal of many doctors' view of medical morality: They think a patient is best treated if the physician follows her personal and ethical code in dealing with sensitive issues. . . . Nor do most of my colleagues think that medical ethics should define a public role for physicians, or that health law and policy should represent moral challenges for physicians. 13


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These doctors make a distinction between the private sphere of doctorpatient interaction ruled by ethical principles and the public sphere of health law and policy from which they keep their distance. Brennan argues that this absolute separation of the private from the public is no longer possible in the modern liberal state: "[M]edical ethics in the future must have two not entirely separable aspects. One retains a focus on relations between doctors and patients. The other moves beyond that focus to address economic and political issues in health care." 14 He therefore supplements the list of ethical propositions that govern physicians' relations with individual patients with a set of ethical propositions that address the institutional context in which care occurs. Although this approach increases the range of doctors' moral concerns, it nevertheless maintains the distinction between doctors' private and public spheres of concern. This approach does not change medical ethics' understanding of the nature of doctors' ethical commitments to their patients. "Public" medical ethics holds that doctors sometimes must leave their private offices where the traditional view of bioethics prevails and advocate for their patients in the public realm. An alternative approach would reject even this isolation of doctors' private relationships with their patients from social problems that exist outside the doctor's office. 15 Feminists have also urged that medical ethics attend to the public side of medicine. An ethics that seeks to end oppression must confront medical practices and health care arrangements that contribute to women's subordination. Susan Sherwin points out that medical ethics tends to accept the current authority and institutional structure of medicine and to focus on practices within that structure such as truthtelling, obtaining consent, and preserving confidentiality. This narrow focus on particular problems of private encounters between doctor and patient obscures the ways in which medicine perpetuates unjust social arrangements. A feminist approach amplifies medical ethics by attending to the politics of the relationship between the practice of medicine and the social order. It is also important for feminist ethics to go further to shatter the myth that the interaction between physician and patient is a private matter. This inquiry furthers the feminist pursuit of destroying fictitious public/private dichotomies because those dichotomies tend to insulate what is deemed "private" from analysis and from requirements of justice. 16 Truth-telling, obtaining consent, and preserving confidentiality are not really confined to the realm of the private relationship between doctors and patients. The moral dilemmas between doctor and patient are interpreted and resolved according to power arrangements outside the doctor's office. Feminist bioethics must navigate between its political and contextual focuses. It must avoid the danger of

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overlooking the physician-patient relationship in exploring the systemic role of medicine, as well as the danger of overlooking the political construction of that relationship in examining interactions between individual doctors and patients. I want to examine how the ethics of the supposedly private doctor-patient relationship are actually structured by public political forces. At one level, the expansion of government intervention into medical care over the last two decades has diminished the power of individual doctors to act on behalf of patients' interests free of market and political restrictions. Medical ethicists constrast the regulation of contemporary medical practice with a supposed prior altruism: "[t]he beneficence theory of medical ethics flourished in an era in which physicians, in their relations with patients, were isolated from economic and political influences . . . and could literally 'do anything' for a patient." 17 I am not primarily concerned here with this obvious level of constraints that take the form of, for example, regulations imposed by health plan administrators. There has always existed a more clandestine level of constraints on the practice of medicine that take a more ideological form. This shadow world of doctor-patient interaction escapes notice in the discourse of medical ethics. Doctors have never encountered patients in isolation from the world, free to apply altruistic moral precepts to private cases.

Using the Perspective of Women of Color The political dimension of the doctor-patient relationship is most apparent when the patient is a woman of color. It is helpful to explore further what it means for feminist ethics to define the patient's context in political terms by considering the perspective of the patient who is a woman of color. Feminist scholars now acknowledge the differences among women. The racial critique of gender essentialism in feminist thought has inspired the ongoing reworking of feminist theory to include the historical, economic, and social diversity of women's experiences.18 First, women experience gender in different ways, depending on other elements of their identity. For example, Black women experience various forms of oppression simultaneously, as a complex interaction of race, gender, and class that is more than the sum of its parts. The focus of mainstream feminist thought on gender as the primary locus of oppression often leaves out women of color altogether, and forces them to fragment their experience in a way that does not reflect the reality of their lives.19 Pretending simply to "add on" race and class to the identities of Black women assumes that there is a universal, essential gender identity common to all women. It also assumes that this core identity is the one experienced by white middle-class women, and


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that they have no racial and class identity of their own. It further implies that individual women are defined by the way that others treat us, rather than by a more complex process that includes each woman's creation of herself from various parts of her experience. In pursuing a feminist analysis of gender as a basis for oppression, we must be careful not to assume that women share a common, essential identity "as women," that can be separated from other elements of their identity. Second, the feminist focus on patriarchy as an isolated system of power relations ignores its systematic interaction with other forms of oppression. Racism and patriarchy are not two separate institutions that intersect only in the lives of Black women. They are two interrelated, mutually supporting systems of domination, and their relationship is essential to understanding the subordination of all women.20 Bell hooks observes that "[b]y calling attention to interlocking systems of domination—sex, race, and class—Black women and many other groups of women acknowledge the diversity and complexity of female experience, of our relationship to power and domination."21 Racism and sexism interact in the practice of medicine and in the social construction of the patient. Feminist descriptions of the medical profession's role in women's subordination often assume that doctors treat all women the same or that medical practice is more fundamentally shaped by gender than it is by race and class. It is well documented that race and class differences affect the type of care patients receive.22 Roger Shuy observed that "[c]onsciously or unconsciously, dialect speakers tend to get worse treatment, wait longer for service, are considered ignorant, and are told what to do rather than asked what they would like to do." 23 Another study found that poor women suffering from cervical cancer treated by rotating residents in a community clinic were more likely to undergo hysterectomies than more affluent women treated regularly by the same physician in a faculty clinic.24 At the same time, Black patients are less likely than white patients to receive certain life-saving surgeries and other therapies, such as bypass surgery, intensive care for pneumonia, long-term hemodialysis, and kidney transplants.25 Alexandra Dundas Todd discovered in her observations of doctor-patient interactions in a community clinic and private office that "the darker a woman's skin and/or the lower her place on the economic scale, the poorer the care and efforts at explanation she got." 26 These women were more likely to be considered "difficult" and "to be talked down to, scolded, and patronized." 27 The current dehumanizing treatment of Black female patients is grounded in a history of doctors' experimentation on slave women before practicing new surgical procedures on white women. Marion Sims, for example, developed gynecological surgery in the nineteenth century by performing countless operations, without anesthesia, on

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slaves, some of whom he purchased expressly for his experiments.28 This legacy was perpetuated during this century in the sterilization abuse of Black women. In the 1970s, some doctors conditioned delivering babies and performing abortions on Black women's consent to sterilization.29 In a 1974 case brought by poor teenage Black women in Alabama, a federal district court found that an estimated 100,000 to 150,000 poor women were sterilized annually under federally funded programs.30 Some of these women were coerced into agreeing to sterilization under the threat that their welfare benefits would be withdrawn unless they submitted to the operation. More recently, a survey published in 1984 found that 13,000 Black women in Maryland were screened for sickle-cell anemia without their consent or the benefit of adequate prescreening education or counseling.31 The impact of race on the doctor-patient relationship is more complex than these examples of disparate treatment might suggest. Race, class, and gender structure doctors' knowledge of their patients and their intepretation of the ethical principles they apply to their interactions with their patients. My point is not only that physicians bring to their encounters with patients the same prejudices as exist in the rest of society. The relationship between doctor and patient is determined by political arrangements and not solely by the individual characteristics of the two actors. One way to discover how power affects the doctor-patient relationship is to examine how it emerges in patterns of communication between them. Sue Fisher and Alexandra Dundas Todd have demonstrated in their studies of doctor-patient interactions that medical decisions reflect the social and political context in which they are made.32 The physician's institutional authority shapes the way language is used during a medical interview, enabling physicians to control and persuade women patients. Moreover, the doctor-female patient relationship adds subordinating societal attitudes toward women to the already asymmetrical structure of medical care. Gender inequality reinforces the power imbalance between physician and patient, "locking male physician and female patient into a dominant-subdominant relationship that may not be in the patient's best interest."33 There is a temptation to see race and class as merely exacerbating the patriarchal values and inequality of power reflected in this interactive behavior. Thus Todd proposes: "Given the increase in asymmetry between doctors and patients when social class is involved, it becomes all the more crucial that women of all classes and races have access to communication strategies for negotiating medical decisions."34 This approach suggests that the dehumanizing treatment of minority patients results from a combination of their inability to negotiate effectively with physicians and the universal power of doctors to dominate


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their discourse with patients. The solution to this augmented power imbalance, if we follow this logic, lies in improving communication within the relationship itself. Sex, race, and class are more than demographic variables that influence the way doctors treat their patients. Race does not merely compound the difficulties that all women experience as a result of medicine's patriarchal attitudes and practices. Women of color are not treated the same as white women, only worse. Sex, race, and class represent inequalities of power that construct the meaning of the patient and her relationship to the doctor. When a physician treats a woman of color differently from a white patient it is more than an aberration; it reflects the racial understanding of the doctor-patient relationship. Adding the perspective of women of color, then, does not merely supplement the feminist view of the doctor-patient relationship. Rather, it reconstructs it. In reading the work of white feminist ethicists, I am sometimes disturbed by the suggestion that they should observe the moral issues affecting women of color and advise these women about their resolution. One calls on feminists to use "epistemic empathy" toward oppression and "offer other oppressed groups our help and insights—in both theory and practice." 35 Another proposes that "from the philosophical armchair, we might ask what questions about health care an Hispanic woman from the barrio would want answered."36 The experience of women of color is often relegated to an aside, a footnote, a subject for observation; they are considered weaker sisters who need understanding and guidance. I am suggesting that the experience women of color have of the intersection of gender and racial oppression may provide critical insights to mainstream feminist theory and practice. Women of color may be more likely to see the political nature of the doctor-patient relationship because racism has not allowed them to assume that they enjoy a private, protective relationship with their doctors. Their social position may give them insight into this political dimension that is hidden from white middle-class women. In her field study of the cultural meaning of prenatal diagnosis in New York City, for example, Rayna Rapp found race and class differences in women's descriptions of their amniocentesis decisions.37 Most middle-class women (who were disproportionately white) accepted amniocentesis in language that resembled the language of medicine. Poorer Black women, on the other hand, "were far less likely to either accept, or be transformed by, the medical discourse of prenatal diagnosis." 38 These women often explained their decision either to use or to reject amniocentesis in terms of nonmedical systems of interpreting their pregnancies, including religion, visions, and folk healing.39 Some rejected the

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test because of fear of losing the baby after medical invasion, or anger and mistrust of the medical system. These observations suggest the need for further study of the forms of resistance to conventional medical practice waged by poor women of color. Because Black women have historically been denied the privileges of race, they may be less likely than white women to believe that they have a stake in the prevailing institution of medicine. They may be more suspicious of doctors' claims of beneficence.40 Black women therefore may be more willing to see themselves in opposition to the medical profession. Rapp concluded from her study, "[p]aradoxically, white middle-class women are both better served by reproductive medicine, and also more controlled by it, than women of less privileged groups." 41 Women of color, then, may show how to remain critical and resist domination within relationships with doctors. Feminists' focus on the power imbalance between doctor and patient and the way in which that relationship has supported women's subordination tends to neglect women's agency. Doctors often treat women of color differently because these women oppose dominant social norms, both ideologically and in practice. The political dimension of the doctor-patient relationship must include their lessons about women's resistance. In the following sections, I will explore the perspective of poor women of color by examining examples of three ethical conflicts involving the doctor-patient relationship. Recent legal conflicts involving the doctor-patient relationship demonstrate how the particular ethical principles of truth-telling, obtaining consent, and preserving confidentiality are practiced according to hierarchies of race and class, as well as gender. Both medical and feminist ethics have looked to these principles to protect and empower women in their encounters with doctors. Both have suggested changing the nature of doctor-patient interactions as a means of establishing more equal relationships with doctors. Recent court decisions, as well as ethical discourse, concerning a wide range of medical issues reflect a trend toward reducing physicians' power and increasing patient self-determination. The experience of women of color confirms that these principles are themselves determined according to power. In other words, the very meaning of truth, consent, and confidentiality depends on social arrangements.

Preserving Confidentiality: Women Who Use Drugs during Pregnancy The traditional moral relationship between doctors and patients rests on the Kantian view of goodness as action done out of respect for another human being as an end in him- or herself and not as a means to


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a higher social good. Physicians must be loyal to their patients; they must not act as agents for any other conflicting interest. Paul Ramsey suggests that the moral content of the doctor-patient relationship centers on the fundamental ethical question: "What is the meaning of the faithfulness of one human being to another?" 42 The well-established principle that confidentiality should govern doctors' communications with their patients follows from this question. In medical ethics, dilemmas arise when the physician's other duties conflict with the duty of keeping patient confidences. Doctors' moral obligation to obey the law or to prevent harm to others may override their obligation to their patients. The American Medical Association's ethical code, like most, does not impose an absolute rule of confidentiality; it provides: "A physician . . . shall safeguard patient confidences within the constraints of the law." 43 The role of physicians in the government's punitive response to drug use during pregnancy demonstrates how race and class, along with gender, help to define the principle of confidentiality. In the last five years, nearly two hundred women have been arrested and charged with criminal offenses after giving birth to babies who test positive for drugs.44 The vast majority of these women are poor and Black; they are typically addicted to crack cocaine. In July 1989, Jennifer Clarise Johnson, a twenty-three-year-old Black woman, became the first woman in the United States to be convicted for exposing her baby to drugs while pregnant. Florida law enforcement officials charged Johnson with two counts of delivering a controlled substance to a minor after her two children tested positive for cocaine at birth. One of the salient features of the Johnson case was the assistance her doctors provided the prosecution in obtaining a conviction. First, the government learned of Johnson's crack addiction only because she confided in her obstetricians who delivered her babies at a public hospital. Her admission prompted the hospital to test her and her babies for drugs. The hospital then reported her to government authorities. Second, the most damaging testimony at her trial came from Johnson's own obstetricians. They testified about Johnson's confidential confession that she used crack shortly before labor. Third, her obstetricians helped the state overcome its major evidentiary hurdle. Because the relevant Florida drug distribution statute did not apply to fetuses, the prosecution invented a novel interpretation of the statute. The prosecution obtained Johnson's conviction for passing a cocaine metabolite from her body to her newborn infants during the sixtysecond period after birth and before the umbilical cords were cut. Johnson's physicians supported this theory by testifying that, even after delivery, "maternally altered" blood circulated between the placenta and each baby through the still-attached umbilical cord.

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The Johnson case and other such prosecutions demonstrate that the requirements of physician confidentiality are determined by race, class, and gender, as well as the circumstances of a particular case. Poor Black women are the primary targets of prosecutors largely because their drug use is more likely to be detected and reported to government authorities. The government's main source of information about prenatal drug use is hospitals' reporting of positive infant toxicologies to child welfare authorities. Most states have not enacted statutes that require testing and reporting, and hospitals applying these tests are almost exclusively those serving poor minority communities. Many of these hospitals have no formal testing protocols, relying instead on the suspicions of health care professionals in individual cases. This discretion allows doctors and hospital staff to perform tests based on their stereotyped assumptions about drug addicts. Private physicians who serve more affluent women are less likely to test them, both because of the doctors' financial stake in their patients' business and referrals, and because they are socially more like their patients.45 Health care professionals are also much more likely to report Black women's drug use to government authorities than they are similar drug use by their wealthy white patients. A study appearing in the New England Journal of Medicine, for example, found that, despite similar rates of substance abuse across racial and socioeconomic lines, Black women were ten times more likely than whites to be reported to public health authorities for substance abuse during pregnancy.46 Physicians do not resolve the moral question of whether to report their pregnant patients for drug use simply by applying the ethical principles of confidentiality and avoiding harm to others to the facts of a particular case. They determine what confidentiality requires according to the patient's race, gender, and economic status. This disparate reporting does not result merely from doctors' simple prejudice against poor Black women, making them less concerned about Black women's confidences. It is likely that doctors are more willing to report their Black female patients because these doctors are part of a society that considers these women to be less deserving of motherhood and in greater need of state control of their reproductive decisions. Reporting Black women reflects the history of systemic, institutionalized denial of Black women's reproductive freedom. This history has involved the brutal coercion of Black women's reproduction during slavery, as well as more recent policies that discourage Black female fertility, including publicly funded birth control clinics established in the South in the 1930s, sterilization abuse during the 1970s, and current proposals to give women on welfare incentives to use Norplant.47 Popular mythology supports these policies by portraying Black women as less deserving of motherhood.48


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The racial disparity in the government's treatment of prenatal substance abuse makes clear that these women are not punished simply because they may harm their unborn children. Poor crack addicts are punished for having babies because they fail to measure up to the dominant society's ideal of motherhood; the combination of their poverty, race, and drug addiction is seen to make them unworthy of procreating. It may be physicians' acceptance of the historical devaluation of Black motherhood that makes it easier for them to report Black women. Reporting the confidences of poor Black mothers seems justified, and therefore not a violation of doctors' ethical duties, because society does not believe these women deserve to bear children. The reporting of women who use drugs during pregnancy illuminates several requirements for transforming medical ethics, as well as demonstrating the racial interpretation of the ethic of confidentiality. These breaches of confidentiality show that changing the model of doctor-patient interaction to elicit more information about the patient will not necessarily empower women. Doctors' dehumanizing treatment of poor Black women does not result from a failure of communication between them. Rather, empowering these women requires a reconstruction of society's view of the patient. The role of doctors in the punishment of drug use during pregnancy also confirms the feminist claim that the medical profession helps to perpetuate social inequalities. Penalizing Black women's decision to bear a child serves to perpetuate the legacy of racial discrimination embodied in the devaluation of Black motherhood. In addition, punishment will often penalize the very women who seek prenatal care or drug treatment, and will discourage others from doing so.49 It is those pregnant addicts who seek help from public hospitals and treatment centers who will be detected and reported to government authorities. Health care professionals have reported that their pregnant clients' fear of prosecution for drug use made some of them distrustful and caused others to decline prenatal care altogether.50 This breach of the ethic of confidentiality has serious implications for the welfare of poor women of color, who already face tremendous barriers to receiving adequate health care. It pushes out women who are already marginal to the health care system.

Truth-Telling: The Rust v. Sullivan Decision Truth-telling is another ethical principle central to the doctor-patient relationship. The obligation of truth-telling derives from the duty of fidelity that characterizes any trusting relationship.51 The trust that patients repose in their doctors does not mean they believe that doctors can act on their behalf. Rather, patients may trust that they will receive

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honest and complete information that enables them to participate in medical decision making. Jay Katz rejects the traditional model of trust, based on parent-child interaction, that emphasizes the doctor's authority. He proposes instead a conversational model in which physicians assist patients in making their own decisions. 52 Ideally, the principle of truth-telling protects patients' autonomy by ensuring their informed participation in a cooperative decision-making process. A duty of truth-telling also follows from the duty to obtain consent, because consent cannot express autonomy unless it is fully and truthfully informed.53 The ethical and legal requirement of informed consent therefore demands that physicians disclose the risks involved in a recommended treatment and the medical alternatives.54 Because of the special relationship between doctor and patient, the duty of veracity not only prohibits lying and nonlying deception, but also requires disclosure of relevant information.55 For doctors, truth-telling encompasses an affirmative duty to inform the patient. The government's restriction of the information doctors may provide their patients in federally funded clinics demonstrates how race, class, and gender help to define the requirement of truth-telling. Congress enacted Title X of the Public Health Service Act in 1970 to give millions of poor and low-income women access to reproductive health services that otherwise would not be available to them. In 1988, the Department of Health and Human Services issued regulations that prohibited family-planning clinics receiving Title X funds from providing their patients with information about abortion.56 The regulations banned Title X clinics from counseling their pregnant patients about abortion, from referring them to an abortion provider, and even from informing them where this information could be obtained. The regulations required Title X clinics to give their pregnant patients a referral list of health care providers that promoted "the welfare of mother and unborn child," but which did not include any health care providers that offered abortion as their principal business. Newly elected President Clinton repealed the regulations on January 22, 1993—the twentieth anniversary of the Roe . Wade decision. However, this came after the Supreme Court upheld the regulations' constitutionality in Rust v. Sullivan.57 Examining the regulations and the Court's interpretation of their impact on the doctor-patient relationship provides an important lesson about the political determination of doctors' ethical principles. The regulations forced doctors to violate the duty of truth-telling in several ways. First, the regulations prohibited doctors from providing their patients with information necessary to make a decision about whether to carry a pregnancy to term. Doctors could neither tell patients of the availability of abortion, nor discuss the possible risks and


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benefits. The government's policy was plainly designed to discourage these women from even considering abortion as an alternative. Second, the commanded silence on abortion and referral only to providers not offering abortion threatened to mislead women who had already decided to terminate a pregnancy about the legality and availability of a safe abortion. Many women are unaware of their right to an abortion or where to obtain a safe, inexpensive one. Recent newspaper stories reveal horrible accounts of poor women who have suffered botched abortions at the hands of unlicensed doctors practicing in unsafe abortion mills.58 A clinic operating under the regulations would encourage some pregnant women to believe that abortion was not legal, available, and safe. Third, the regulations posed a special threat to women suffering from certain serious medical conditions, such as heart disease, hypertension, diabetes, sickle-cell anemia, and cancer, whose progression might be accelerated by pregnancy. The regulations prevented doctors from advising these women that abortion might reduce the long-term risks to their health. Moreover, the required support of the pregnancy and recommendation of prenatal care would give the false impression that pregnancy did not jeopardize their health. The obligation of truthtelling requires physicians to advise patients with a dangerous medical condition about abortion, as well as prenatal care, so that they may make an informed assessment of the risk that pregnancy poses to their health. The regulations' impact would have been most dramatic for Black patients. Black women are more likely than white women to rely on publicly funded clinics because they are less likely to have health insurance or sufficient income to pay a private physician whom they visit regularly.59 Moreover, Black women are more likely than white women to experience other difficulties in obtaining abortions such as inability to afford an abortion or to locate a safe abortion provider in their neighborhood.60 At the same time, Black women more often suffer from the medical conditions that are aggravated by pregnancy and so may need to be informed about abortion to make a considered decision about whether to carry the pregnancy to term.61 Despite these violations of patient trust, a divided Supreme Court upheld the regulations. The majority rejected the First and Fifth Amendment challenges brought by clinics and their doctors, reasoning that the regulations were merely a government refusal to subsidize the delivery of abortion information.62 The Court declined to give special protection to the medical communications at issue, because it concluded that the doctor-patient relationship in Title X clinics was not worthy of protection: "[T]he doctor-patient relationship established by

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the Title X program [is not] sufficiently all-encompassing so as to justify an expectation on the part of the patient of comprehensive medical advice." 63 The Court wrongly assumed that Title X patients have the ability to seek other medical advice. In fact, these women may encounter numerous obstacles in attempting to obtain reproductive health services elsewhere. Title X funded clinics are often the only provider of medical services and health information that their patients can afford. 64 But more significant is the way the Court minimized the importance of the ethic of truth-telling in physicians' encounters with these particular patients. The Court probably would have applied far stricter scrutiny had the regulations banned abortion advice given in a private doctor's office or even to private patients who used a clinic receiving Title X funds. One federal appellate court that upheld the regulations explicitly acknowledged this distinction between public and private patients.65 The Supreme Court thus approved a system of truth-telling for those patients with resources and deception for those without. The government may actively protect the rights of patients who can afford to pay for their care through laws that require medical information, while deliberately promoting ignorance of that same information among poor women. This is only one of the ways in which poor women's dependency on government aid has come to mean a lack of entitlement to the basic protections and rights extolled by medical ethics. Doctors' sterilization abuse of Black women on welfare discussed earlier is another example. Ideology—a social group's way of thinking about the world—supports unequal social arrangements by making them seem fair and natural. The current dominant ideology of poverty, race, and gender links reliance on publicly supported health care with the forfeiture of a claim to patient autonomy, including a claim to the principle of veracity. The Court did not recognize any injury in violating the autonomy of patients who depend on government funded services. It did not see how the regulations breached the duty of veracity because it could not imagine poor Black women as self-determining people.

Obtaining Consent: Forced Medical Treatment of Pregnant Women Respect for the patient's autonomy creates a moral duty to seek consent to medical procedures. 66 This ethical precept is well established in legal doctrine, expressed in Justice Cardozo's much cited pronouncement: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent commits an


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assault. . . . "67 Like the ethical mandates I have already discussed, the requirement that the physician obtain his patient's consent is not absolute. An ethical dilemma may arise, for example, when the patient refuses a procedure that her doctor believes is in her best interest or, in the case of a pregnant patient, in the best interest of the fetus she is carrying.68 Legal and medical journals have reported numerous cases in the last fifteen years in which doctors and hospital administrators have petitioned courts to order obstetrical procedures against the patient's will.69 Doctors have also performed forced medical treatment on pregnant patients to benefit the fetus without obtaining a court order.70 Many commentators have argued that judicial decisions that allow doctors to perform surgery and other procedures on a pregnant woman without her consent violate her right to decisional autonomy and bodily integrity.71 The weighing of concerns in resolving the ethical dilemma is highly gendered. Forced treatment decisions equate women with inert vessels, disregard their own choices, and value them solely for their capacity to nurture the fetus.72 The pregnant patient's wishes are so easily subordinated because she is defined in terms of her procreative function, without interests of her own that are worthy of respect. The forced treatment cases reveal that the obligation to obtain consent is interpreted according to race as well as gender. A national survey published in 1987 in the New England Journal of Medicine discovered twenty-one cases in which court orders were sought, in eighteen of which petitions were granted.73 Eighty-one percent of the women involved were women of color; all were treated in a teaching-hospital clinic or were receiving public assistance.74 Just as doctors are more likely to breach their duties of confidentiality and truth-telling when their patients are women of color, they are more likely to force medical treatment upon these patients. The racial disparity may be explained partly by physicians' unwillingness to acknowledge the complexity of patients' cultural life, interpreting refusals to follow medical judgments as individual idiosyncracies. Rayna Rapp's finding that low-income Black women often explained their decision to refuse medical intervention during pregnancy in terms of nonmedical systems, such as religion, visions, and folk healing, is confirmed by the facts of some of the forced cesarean cases. Jessie Mae Jefferson, for example, rejected her doctor's recommendation of cesarean delivery because of her religious belief that "the Lord has healed my body and that whatever happens to the child will be the Lord's will."75 A Nigerian woman, pregnant with triplets, refused a cesarean section because she believed that vaginal delivery would be safe and would avoid complications with future children

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after her return to Africa, where cesarean delivery might not be possible.76 Judges and doctors describe women who refuse medical treatment as angry, irrational, fearful, stubborn, selfish, and uncooperative.77 They dismiss these women's reasons for rejecting doctors' recommendations, reasons which are not expressed in scientific terms, as unfounded and illegitimate. "[T]he hegemonic discourse of science encounters cultural differences of nationality, ethnicity, or religion and often chooses to reduce them to the level of individual defensiveness."78 In this way, the medical model of childbirth perpetuates minority women's subordination by construing women's explanations in a way that justifies doctors' control. Why are doctors more likely to determine that the duty to obtain consent is outweighed in the case of women of color? Race helps to explain why they treat the choices of these women with less respect. Doctors are more likely to deem the judgments of white, middle-class women to be legitimate because these women are considered more closely affiliated with the interests of medical authority. Minority women's motives for challenging their doctors' advice are more suspect; since they are defined as irresponsible mothers, their reasons are more likely to be considered irrational and selfish. Lisa Ikemoto imagines the doctor's subliminal assessment: "Insiders differ less often so we can assume that they only differ for important reasons; and insiders know and understand the standards, so their rejection of authority is informed."79 It also appears that privileged women are more likely to consent to cesarean surgeries, even though they are performed at alarming rates.80 These women may more readily obey their doctors' orders because they trust their doctors and seek the support and approval of those in medical authority. Women of color, on the other hand, may more readily reject these medical interventions because of an alternative cultural view of birth or because their experience of racism leads them to distrust medical authority. Nancy Ehrenreich suggests that the court-ordered treatment of women of color may constitute a coercive response to their acts of resistance to doctors' control of their reproduction.81

Toward A New Patient Reconstruction What do these examples of the role of race, class, and gender in doctors' application of ethical principles teach us about a feminist reconstruction of the patient? What would it mean to reject the view of the doctor-patient relationship as a purely private realm and understand its political nature? First, the experiences of women of color caution


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against placing too much faith in the power of conceptual models of the doctor-patient relationship to produce progress. We can debate replacing a contractual model with a caring model, or a paternalism model with a friendship model. Feminist models are indeed progressive in envisioning doctor-patient relationships that better empower women to take control of their health. It is important to strive for doctor-patient interaction based on caring, mutual respect, and shared decision making rather than paternalism or authoritarianism. But the implementation of any ethical model will be determined by the hierarchies of power in which the doctor-patient relationship is embedded. We must acknowledge the inadequacy of attempting to ensure patient self-determination solely within the confines of the doctorpatient relationship. Transforming the doctor-patient relationship must involve transforming the structure of health care and of other institutions in our society. Second, it follows that feminist work must recognize that the current structure of the health care delivery system reinforces an oppressive view of certain patients. When medical care is delivered in publicly supported settings, racist stereotypes powerfully come into play, as each example discussed above illustrates. Ethical obligations seem to apply with greater force to the traditional, "private" doctor—patient relationship, in which a patient contracts with her own physician and the two develop a personal relationship based on trust. These same principles weaken when a poor patient encounters a physician, perhaps only once, and in a public facility. Reconstructing the patient requires eliminating the current assumption that these poor patients are somehow less than full, autonomous human beings, entitled to the same ethical consideration as the wealthier. Dependency on government aid cannot entail a forfeiture of the patient's claim to selfdetermination. We should examine, for example, ways to finance health care for poor and low-income people that eliminate their identification as public assistance recipients and facilitate their access to the same medical services available to the affluent. The present construction of the patient is determined by systemic barriers between doctors and women of color. Less than half of Black patients visit private physicians; they rely much more than white patients on hospital emergency rooms for health care.82 Many Black women are uninsured and simply cannot afford the cost of regular visits to the doctor. The lack of a personal physician has profound significance for the meaning of the doctor-patient relationship for women of color. The traditional understanding of that relationship is grounded in the assumption of an intimate and sustained association between a patient and her doctor. That basic assumption does not describe the experiences of many women of color. From doctors' point of view, this

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difference appears to diminish their sense of loyalty to the patient. From patients' point of view, it changes the focus of concern in establishing a relationship with a doctor. Indeed, the primary concern of many poor women of color is not having an ethical conflict with their doctors, but affording or finding one in the first place. A Haitian woman's explanation of why she discontinued prenatal care at a public hospital illustrates how health care's structure repels poor women of color: My friend say go to doctor and get checked. . . . My friend be on phone much time before they make appointment. They no have space for 30 days. When I go to hospital, it confusing. ... I go early, and see doctor late in the afternoon. ... I wait on many long lines and take lots of tests. I no understand why so many test every time. No one explain nothing. No one talk my language. I be tired, feel sick from hospital. I go three times, but no more. Too much trouble for nothing.83

Third, a feminist reconstruction of the patient should not encompass solely the physician's understanding of the patient, but also the patient's understanding of the physician. Patients' own knowledge of their relationship to the medical profession will influence their participation in medical decision making and their interactions with their doctors. Women of color may tend to take a more oppositional stance to the judgments of their doctors than most white middle-class women, because women of color's experience of racism and the social and cultural distance between these women and their doctors makes them more willing to do so.84 Their resistance to medical control also suggests that women's empowerment may come from a source other than reforming the ethics of the medical profession. While insisting on the more equitable application of ethical propositions, we should encourage women's creation of their own alternatives to institutional medicine.85 Finally, this reconstruction must take into account the relationship between racism and patriarchy in medical practice and in the larger society. It must recognize that the treatment of patients who are women of color derives from the racism that infects the doctor-patient relationship rather than being simply an exaggeration of the treatment of white women. A feminist ethic of the doctor-patient relationship must therefore feature an affirmative assault on racism in medical practice. Privileged racial identity has always provided whites (including white women) with a powerful incentive to leave the existing social order intact. Fighting racism, sexism, and classism as we work toward a feminist revision of health care requires that each of us relinquish any


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stake we may have in current social arrangements. Feminist ethics has much to learn from the experiences of those who have the least to gain from preserving the present institution of medicine, and the most to gain from changing it.

Notes I presented an earlier draft of this chapter at a Feminism and Legal Theory Workshop organized by Martha Fineman at Columbia Law School, and at a Duke Law School Visiting Faculty Workshop. I thank the participants for their helpful comments. The chapter especially benefited from the careful reading and suggestions of Norman Cantor, Nancy Ehrenreich, Thomas D. Rowe, Jr., and Nadine Taub. I am indebted to Susan Wolf for her editorial help, enthusiasm, and friendship. My gratitude also to my family for their continued support. 1. Jorge L. A. Garcia, "African-American Perspectives, Cultural Relativism, and Normative Issues: Some Conceptual Questions," in Harley E. Flack and Edmund D. Pellegrino, eds., African-American Perspectives on Biomedical Ethics (Washington, DC: Georgetown University Press, 1992), 11-66, 11. Susan Sherwin similarly distinguishes between "feminine ethics," which studies and applies women's distinctive moral perspective, and "feminist ethics," which incorporates a critique of the specific practices that oppress women. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 49. 2. Jay Katz, The Silent World of Doctor and Patient (New York, NY: Free Press, 1984), xix. 3. Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 4th ed. (New York, NY: Oxford University Press, 1994). 4. David DeGrazia, "Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principalism," Journal of Medicine and Philosophy 17 (1992): 51139; K. Danner Clouser and Bernard Gert, "A Critique of Principlism," Journal of Medicine and Philosophy 15 (1990): 219-36. 5. Ronald J. Christie and C. Barry Hoffmaster, Ethical Issues in Family Medicine (Oxford, England: Oxford University Press, 1986); Richard Zaner, Ethics and the Clinical Encounter (Englewood Cliffs, NJ: Prentice-Hall, 1988). 6. Eric J. Cassell, The Nature of Suffering and the Goals of Medicine (New York, NY: Oxford University Press, 1991), 156-74. Jay Katz similarly asks: "What can and must the intern and the senior physician learn about a patient in order not to reduce him to a mere inhuman object?" Katz, The Silent World, xix. 7. Cassell, The Nature of Suffering, 174. 8. Sherwin, No Longer Patient, 76-91; Susan Sherwin, "Feminist and Medical Ethics: Two Different Approaches to Contextual Ethics," in Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992), 17-31, 17. For an exploration of contrasting uses of the phrase "in context" in contemporary debates over political philosophy and legal theory, see Martha Minow and Elizabeth V. Spelman, "In Context," Southern California Law Review 63 (1990): 1597-652. Feminists have also rejected the interpretation of autonomy that isolates the individual from the rest of society, because it overlooks the inseparable connection between patients' decision making and the communities in which they

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live. The model of individual decision making ignores the complexity of the patient's cultural context and reduces the myriad of social factors that affect her decisions to individual idiosyncrasies. Rayna Rapp, "Constructing Amniocentesis: Maternal and Medical Discourses," in Faye Ginsburg and Anna Lowenhaupt Tsing, eds., Uncertain Terms: Negotiating Gender in American Culture (Boston, MA: Beacon Press, 1990), 33. 9. Sherwin, "Feminist and Medical Ethics," 21. Martha Minow and Elizabeth Spelman have similarly argued that "justice is more likely to be served when judges attend to ... the relative positions of power of all the parties in a lawsuit, including the judge." Minow and Spelman, "In Context," 1598-99. See also Martha Minow and Elizabeth V. Spelman, "Passion for Justice," Cardozo Law Review 10 (1989): 37-76. 10. See, for example, David Orentlicher, "The Illusion of Patient Choice in End-of-Life Decisions," Journal of the American Medical Association 267 (1992): 2101-04. 11. Sherwin, No Longer Patient, 177-240. 12. Important examples of this approach to medical ethics, which focuses on improving physicians' ethical conduct in encounters with their patients, through emphasis on beneficence, autonomy, or both, are Eric J. Cassell, The Healer's Art: A New Approach to the Doctor-Patient Relationship (Philadelphia, PA: J. B. Lippincott Company, 1976); Edmund D. Pellegrino and David C. Thomasma, For The Patient's Good: The Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988); and Robert M. Veatch, A Theory of Medical Ethics (New York, NY: Basic Books, 1981). 13. Troyen A. Brennan, Just Doctoring: Medical Ethics in the Liberal State (Berkeley, CA: University of California Press, 1991), 73. 14. Ibid., 88. 15. Howard Waitzkin, for example, explores how "[e]ncounters with doctors help patients consent to social conditions, by softening the physical or psychological effects of contextual problems, or by encouraging adherence to customary expectations about desirable behavior." Howard Waitzkin, The Politics of Medical Encounters: How Patients and Doctors Deal with Social Problems (New Haven, CT: Yale University Press, 1991), 10. 16. See, for example, Susan Moller Okin, Justice, Gender, and the Family (New York, NY: Basic Books, 1989); Frances E. Olsen, "The Family and the Market: A Study of Ideology and Legal Reform," Harvard Law Review 96 (1983): 1497-578. 17. Brennan, Just Doctoring, viii. 18. See, for example, bell hooks, Ain't I a Woman: Black Women and Feminism (Boston, MA: South End Press, 1981); Audre Lorde, "Age, Race, Class, and Sex: Women Redefining Difference," in Sister Outsider (Trumansburg, NY: Crossing Press, 1984), 114; Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (Boston, MA: Beacon Press, 1988); Kimberle Crenshaw, "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics," 1989 University of Chicago Legal Forum (1989): 139-67. 19. Angela P. Harris, "Race and Essentialism in Feminist Legal Theory," Stanford Law Review 42 (1990): 581-616. 20. I have described elsewhere, for example, how racism and patriarchy interact in the social construction of motherhood in a way that treats Black and white mothers differently and yet helps to confine both to inferior roles. Dorothy E. Roberts, "Racism and Patriarchy in the Meaning of Motherhood," American University Journal of Gender and the Law 1 (1993): 1-38.


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21. bell hooks, "Feminism: A Transformational Politic," in Deborah L. Rhode, ed., Theoretical Perspectives on Sexual Difference (New Haven, CT: Yale University Press, 1990), 185-93, 185, 187. 22. See, for example, Council on Ethical and Judicial Affairs, "Black-White Disparities in Health Care," Journal of the American Medical Association 263 (1990): 2344-46; Mark B. Wennecker and Arnold M. Epstein, "Racial Inequalities in the Use of Procedures for Patients With Ischemic Heart Disease in Massachusetts," Journal of the American Medical Association 261 (1989): 253-57; Robert ]. Blendon, Linda H. Aiken, Howard E. Freeman, and Christopher R. Corey, "Access to Medical Care for Black and White Americans: A Matter of Continuing Concern," Journal of the American Medical Association 261 (1989): 278-81. 23. Roger Shuy, "Three Types of Interference to an Effective Exchange of Information in the Medical Interview," in Sue Fisher and Alexandra D. Todd, eds., The Social Organization of Doctor-Patient Communication (Washington, DC: Center for Applied Linguistics/Harcourt Brace Jovanovich, 1983), 192. 24. Sue Fisher, In the Patient's Best Interest: Women and the Politics of Medical Decisions (New Brunswick, NJ: Rutgers University Press, 1988). 25. Council on Ethical and Judicial Affairs, "Black-White Disparities in Health Care." A study of patients with cardiovascular disease or chest pain in Department of Veterans Affairs Hospitals found that even when financial incentives were absent, whites were more likely than Blacks to undergo invasive cardiac procedures. See Jeff Whittle, Joseph Congligliaro, C. B. Good, and Richard P. Lofgren, "Racial Differences in the Use of Invasive Cardiovascular Procedures in the Department of Veterans Affairs Medical System," New England Journal of Medicine 329 (1993): 621-27. 26. Alexandra Dundas Todd, Intimate Adversaries: Cultural Conflict between Doctors and Women Patients (Philadelphia, PA: University of Pennsylvania Press, 1989), 77. 27. Ibid. 28. G. J. Barker-Benfield, The Horrors of the Half-Known Life: Male Attitudes Toward Women and Sexuality in Nineteenth-Century America (New York, NY: Harper & Row, 1976), 101. 29. See Angela Davis, Women, Race, and Class (New York, NY: Vintage Books, 1981), 220; Laurie Nsiah-Jefferson, "Reproductive Laws, Women of Color, and Low-Income Women," in Sherrill Cohen and Nadine Taub, eds., Reproductive Laws for the 1990s (Clifton, NJ: Humana Press, 1989), 23-67, 23, 46-47. An experimental sterilization program in Puerto Rico resulted in the surgical sterilization of over 35 percent of Puerto Rican women of childbearing age by the 1970s. Davis, Women, Race, and Class, 219. 30. Relf v. Weinberger, 372 F. Supp. 1196, 1199 (D.D.C. 1974), on remand sub nom. Relf v. Mathews, 403 F. Supp. 1235 (D.D.C. 1975), vacated sub nom. Relf v. Weinberger, 565 F.2d 722 (D.C. Cir. 1977). Other cases concerning sterilization abuse of Black women on welfare include Cox v. Stanton, 529 F.2d 47 (4th Cir. 1975) (reversing dismissal of a claim brought by Black woman who was permanently sterilized after she agreed to temporary sterilization when threatened with termination of welfare benefits); Walker v. Pierce, 560 F.2d 609 (4th Cir. 1977), cert. denied, 434 U.S. 1075 (1978) (reversing judgment against a doctor who required Medicaid recipients to consent to undergo tubal ligation before he would deliver their third child). 31. Mark R. Farfel and Neil A. Holtzmann, "Education, Consent and Counseling in Sickle-Cell Screening Programs: Report of a Survey," American Journal of Public Health 74 (1984): 373-75. This finding is reminiscent of the infamous

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Tuskegee Study, in which the government, from 1932 to 1972, experimented on four hundred poor Black men who had syphilis to study the course of the untreated disease. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York, NY: Free Press, 1981). 32. Fisher, In the Patient's Best Interest; Todd, Intimate Adversaries; Sue Fisher and Alexandra Dundas Todd, "Friendly Persuasion: Negotiating Decisions to Use Oral Contraceptives," in Sue Fisher and Alexandra Dundas Todd, eds., Discourse and Institutional Authority: Medicine, Education and Law (Norwood, NJ: Ablex, 1986), 3. For another discussion of how doctors reinforce women's roles in the family and at work by controlling communications with female patients, see Waitzkin, The Politics of Medical Encounters, 107-42. 33. Fisher, In the Patient's Best Interest, 5. 34. Todd, Intimate Adversaries, 39. Todd recognizes later in her book, however, that analyses of the doctor-patient relationship should not be "insulated from larger contexts," pointing out that the scientific world view influences this relationship. Ibid., 103. She argues that "the role science has played as a social theory in constructing women's place" helps to determine communications between doctor and patient; for example, it leads doctors to ignore women's statements and interpretations of their experiences. Ibid., 114, 12123. 35. Helen Bequaert Holmes, "A Call to Heal Medicine," in Holmes and Purdy, eds., Feminist Perspectives in Medical Ethics, 1-8, 1, 3. 36. Virginia L. Warren, "Feminist Directions in Medical Ethics," in Holmes and Purdy, eds., Feminist Perspectives in Medical Ethics, 32-45, 32, 40. For suggestions about how white feminists can engage in a mutual dialogue with women of color without being imperialistic, ethnocentric, or disrespectful, see Maria C. Lugones and Elizabeth V. Spelman, "Have We Got a Theory for You! Feminist Theory, Cultural Imperialism and the Demand for 'The Woman's Voice,' " Women's Studies International Forum 6 (1983): 573-81. 37. Rapp, "Constructing Amniocentesis," 28. Emily Martin similarly found differences in the way that middle-class and working-class women resist the medical model of childbirth. Emily Martin, "The Ideology of Reproduction: The Reproduction of Ideology," in Ginsburg and Tsing, eds., Uncertain Terms, 300. She suggests that some middle-class women, by emphasizing their own control over birth, may be reproducing the ideology and practice of control advocated by the medical model. 38. Rapp, "Constructing Amniocentesis," 31-32. 39. On this alternative view of health, see J. Herman Blake, "Doctor Can't Do Me No Good," in Wilbur H. Watson, ed., Black Folk Medicine: The Therapeutic Significance of Faith and Trust (New Brunswick, NJ: Transaction Books, 1983), 33. 40. Jorge Garcia suggests that an African American perspective on bioethical matters "will be inclined to distrust the 'ethics of trust' that some physicians espouse" because of medicine's insensitivity to African American needs. Garcia, "African-American Perspectives," 36. Annette Dula similarly argues that this unequal health status helps to shape a distinctive African American bioethics. Annette Dula, "Yes, There Are African-American Perspectives on Bioethics," in Flack and Pellegrino, eds., African-American Perspectives on Biomedical Ethics, 193-203, 193, 194. 41. Rapp, "Constructing Amniocentesis," 40. 42. Beauchamp and Childress, Principles of Biomedical Ethics, 4th ed., 430, quoting Paul Ramsey, The Patient as Person (New Haven, CT: Yale University Press, 1970), xii.


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43. American Medical Association Principles of Medical Ethics (1980), sec. IV, reprinted in Katz, The Silent World, 237. An earlier version was more detailed: A physician may not reveal the confidences entrusted to him in the course of medical attendance, or the deficiencies he may observe in the character of his patients, unless he is required to do so by law or unless it becomes necessary in order to protect the welfare of the individual or of the community.

The American Medical Association Principles of Medical Ethics (1957), sec. 9, reprinted in Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 1st ed. (New York, NY: Oxford University Press, 1979), 282, 284. State statutes that protect the confidentiality of doctor-patient communications, as well as court decisions, have also recognized a number of exceptions. See, for example, Tarasoff v. Board of Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14 (1976) (holding that a psychotherapist had a duty to disclose to a third person his patient's intention to kill her). 44. Lynn M. Paltrow, Criminal Prosecutions Against Pregnant Women (New York, NY: Reproductive Freedom Project, American Civil Liberties Union Foundation, 1992), i. For a more thorough discussion of the prosecutions and the constitutional issues they raise, see Dorothy E. Roberts, "Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right of Privacy," Harvard Law Review 104 (1991): 1419-82. 45. Ira J. Chasnoff, Harvey J. Landress, and Mark E. Barrett, "The Prevalence of Illicit-Drug or Alcohol Use During Pregnancy and Discrepancies in Mandatory Reporting in Pinellas County, Florida," New England Journal of Medicine 322 (1990): 1202-06, 1205-06; Carol Angel, "Addicted Babies: Legal System's Response Unclear," Los Angeles Daily Journal, February 29, 1988, p. 1. 46. Chasnoff, Landress, and Barrett, "The Prevalence of Illicit-Drug or Alcohol Use During Pregnancy," 1204. 47. Davis, Women, Race, and Class, 202-21; Dorothy E. Roberts, "Crime, Race, and Reproduction," Tulane Law Review 67 (1993): 1943-75, 1968-70. 48. Roberts, "Punishing Drug Addicts," 1436-44. 49. To its credit, the American Medical Association has opposed the prosecution of women who use drugs during pregnancy for this reason. American Medical Association, "Report of the Board of Trustees on Legal Interventions During Pregnancy: Court Ordered Medical Treatments and Legal Penalties for Potentially Harmful Behavior by Pregnant Women," Journal of the American Medical Association 264 (1990): 2663-70. 50. Kary L. Moss, "Legal Issues: Drug Testing of Postpartum Women and Newborns as a Basis for Civil and Criminal Proceedings," Clearinghouse Review 23 (1990): 1406-14, 1411-12. 51. Beauchamp and Childress, Principles of Biomedical Ethics, 4th ed., 396-97. 52. Katz, The Silent World, 85-103. 53. Beauchamp and Childress, Principles of Biomedical Ethics, 4th ed., 396; Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent (New York, NY: Oxford University Press, 1986), 274-87. 54. Faden and Beauchamp, A History and Theory of Informed Consent, 23-43; Canterbury v. Spence, 464 F.2d 772, 781 (D.C. Cir.), cert. denied, 409 U.S. 164 (1972). 55. Beauchamp and Childress, Principles of Biomedical Ethics, 4th ed., 397. 56. "Project Grants for Family Planning Services," 42 C.F.R. §§59.2, 59.7-.10 (1989). These regulations, issued pursuant to Title X of the Public Health Ser-

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vice Act, Public Law No. 91-572, 84 Stat. 1506 (codified as amended at 42 U.S.C. §§300 to 300a-41 (1982)), were popularly known as "the gag rule." A federal judge enjoined the government from enforcing the regulations before they had any widespread effect on clinics. National Family Planning & Reproductive Health Association v. Sullivan, No. 91-935 (D.D.C. May 28, 1992), affirmed, 979 F.2d 227 (D.C. Cir. 1992). 57. 500 U.S. 173 (1991). For a more thorough discussion of the Rust v. Sullivan decision, see Dorothy E. Roberts, "Rust v. Sullivan and The Control of Knowledge," George Washington Law Review 61 (1993): 201-70. 58. See, for example, Robert D. McFadden, "Abortion Mills Thriving Behind Secrecy and Fear," New York Times, November 24, 1991, pp. Al, A36 (telling the story of Doris Olivo, a twenty-nine-year-old unemployed, Dominican mother of two children, who received a botched abortion from a doctor she read about in a newspaper advertisement). 59. William D. Mosher, "Use of Family Planning Services in the United States: 1982 and 1988," Vital and Health Statistics (April 1990): 1-8. 60. Nsiah-Jefferson, "Reproductive Laws, Women of Color, and LowIncome Women," 30-33. 61. Ibid., 27-28. 62. The petitioners argued that the regulations violated clinic employees' freedom of speech, protected by the First Amendment of the United States Constitution, by prohibiting them from speaking about abortion. The petitioners also argued that the regulations violated the privacy rights of clinic patients, protected by the Fifth Amendment's Due Process Clause, by interfering with their decision to terminate a pregnancy. 63. 500 U.S. 173, 200 (1991). 64. United States Department of Health and Human Services, Program Guidelines for Project Grants for Family Planning Services, sec. 9.4 (1981); Nadine Brozan, "Poor are Rocked by Closing of Gynecological Clinics," New York Times, March 25, 1991, p. Bl; Alexandra A. E. Shapiro, "Title X, The Abortion Debate, and the First Amendment," Columbia Law Review 90 (1990): 1737-78, 1738 (90 percent of Title X patients have incomes below 150 percent of the poverty level). 65. New York v. Sullivan, 889 F.2d 401, 413-14 (2d Cir. 1989). 66. Beauchamp and Childress, Principles of Biomedical Ethics, 4th ed., 142. 67. Schloendorff v. New York Hospital, 211 N.Y. 125, 127, 105 N.E. 92, 93 (1914). 68. For differing views on the resolution of this problem in the case of pregnant women, see George Annas, "Forced Cesarean Sections: The Most Unkindest Cut of All," Hastings Center Report 12 (June 1982): 16-17, 45, and John C. Fletcher, "The Fetus as Patient: Ethical Issues," Journal of American Medical Association 246 (1981): 772-73. 69. See, for example, Veronika E. B. Kolder, Janet Gallagher, and Michael T. Parsons, "Court-Ordered Obstetrical Interventions," New England Journal of Medicine 316 (1987): 1192-96; Nancy K. Rhoden, "The Judge in the Delivery Room: The Emergence of Court-Ordered Cesareans," California Law Review 74 (1986): 1951-30. 70. Ronna Jurow and Richard H. Paul, "Cesarean Delivery for Fetal Distress Without Maternal Consent," Obstetrics and Gynecology 63 (1984): 596-98. 71. See, for example, Lawrence J. Nelson, Brian P. Buggy, and Carol J. Weil, "Forced Medical Treatment of Pregnant Women: 'Compelling Each to Live as


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Seems Good to the Rest; " Hastings Law Journal 37 (1986): 703-63; Rhoden, "The Judge in the Delivery Room." 72. Janet Gallagher, "Prenatal Invasions and Interventions: What's Wrong with Fetal Rights," Harvard Women's Law Journal 10 (1987): 9-58. 73. Kolder, Gallagher, and Parsons, "Court-Ordered Obstetrical Interventions," 1192. 74. Ibid. For a comparison of the general distribution of cesarean sections with that of cesareans performed pursuant to court order, see Janean Acevado Daniels, "Court-Ordered Cesareans: A Growing Concern for Indigent Women," Clearinghouse Review 21 (1988): 1064-71. 75. Jefferson v. Griffin Spalding County Hosp., 274 S.E.2d 457, 459 (Ga. 1981). For a discussion of the facts of this and other forced cesarean section cases, see Lisa C. Ikemoto, "The Code of Perfect Pregnancy: At the Intersection of the Ideology of Motherhood, the Practice of Defaulting to Science, and the Interventionist Mindset of Law," Ohio State Law Journal 53 (1992): 1205-1306. 76. Ibid., 1243. 77. Lisa C. Ikemoto, "Furthering the Inquiry: Race, Class, and Culture in the Forced Medical Treatment of Pregnant Women," Tennessee Law Review 59 (1992): 487-517; Rapp, "Constructing Amniocentesis," 33. 78. Rapp, "Constructing Amniocentesis," 33. 79. Ikemoto, "Furthering the Inquiry," 513. 80. Linda R. Monroe, "Affluent Women Twice as Likely as Poor to Have Cesarean Births," Los Angeles Times, July 27, 1989, p. 3. See also Council on Ethical and Judicial Affairs, "Black-White Disparities in Health Care," 2345 (reporting that a five-year study of deliveries in four New York City hospitals found that "private patients were more likely than clinic patients to have a cesarean section, even though the private patients were less likely to have medical problems or to be delivered of low-birth weight babies"). 81. Nancy Ehrenreich, "The Colonization of the Womb," Duke Law Journal 43 (1993): 492-587, 520-65. 82. Angela Y. Davis, "Sick and Tired of Being Sick and Tired: The Politics of Black Women's Health," in Evelyn C. White, ed., The Black Women's Health Book: Speaking for Ourselves (Seattle, WA: Seal Press, 1990), 18, 23. 83. Francis G. Caro, Debra Kalmuss, and Iris Lopez, Barriers to Prenatal Care (New York, NY: Community Service Society, 1988), 1. 84. There is a need for further study of the forms of resistance to medical control practiced by poor women of color, but their oppositional stance is suggested by their responses to doctors' judgments about amniocentesis, cesarean delivery, and labor. See Ehrenreich, "The Colonization of the Womb;" Ikemoto, "Furthering the Inquiry;" Rapp, "Constructing Amniocentesis;" Martin, "The Ideology of Reproduction." 85. The National Black Women's Health Project, for example, seeks to empower Black women to take control of their health. Byllye Avery, "Empowerment Through Wellness," Yale Journal of Law and Feminism 4 (1991): 147-54. See also Ronald Braithwaite and Ngina Lythcott, "Community Empowerment as a Strategy for Health Promotion for Black and Other Minority Populations," Journal of the American Medical Association 261 (1989): 282-83.

5 What Bioethics Can Learn from the Women's Health Movement Rebecca Dresser

After advising me on when to put in my diaphragm ("Dinner, dishes, diaphragm," he said), my ob/gyn went on to speak about the fairly serious postpartum depression I was experiencing. "I like to tell my new mothers to get out to the library once in a while to keep their minds alive, but basically to find their happiness in the fact that they are taking care of their husbands and raising a new generation."1 I knew that my doctor had a reputation for being one of the best in the city, and it made me feel good when I said his name and other people would say, "Oh, right, I've heard of him." I expected that he was going to do the best job he could possibly do. When he criticized me, I shrank inside. Sometimes I'd be annoyed that I had to travel so far for him to look at my stomach. But the mysteries still held. He was going to give me the baby. Once he confused me with someone else, and I was very depressed.2 Karen has chronic vaginitis, probably a yeast infection. After nearly a year of repeated treatments, her doctor continues to prescribe the same medication. Even though she tells the doctor the medication does not work, he keeps prescribing the same thing.3 Women have been among the most dissatisfied medical care consumers, and these stories make it easy to see why. In the 1960s, this dissatisfaction gave birth to the women's self-help health movement.4 The

What Bioethics Can Learn from the Women's Health Movement 145 Boston Women's Health Book Collective publications, where these three women's stories appear, are the most detailed and well-known accounts of the movement's concerns. In this chapter, I examine the themes articulated in these and other relevant publications. This literature is a rich source of information for bioethics and supplies valuable guidance for our educational and scholarly efforts. The women of this movement have something important to say to bioethicists. Three broad themes are evident in the movement literature. The first edition of the Collective's Our Bodies, Ourselves had its roots in the formation of The Doctor's Group in 1969, a women's discussion and support group. Anger at physicians and the medical care system was the trigger: "[W]e had all experienced similar feelings of frustration and anger toward specific doctors and the medical maze in general, and initially we wanted to do something about those doctors who were condescending, paternalistic, judgmental, and non-informative."5 This anger persists and is expressed in a litany of grievances recited in the most recent edition. Women continue to report that doctors and other health care professionals have "not listened to them or believed what they said; withheld knowledge; lied to them; treated them without their consent; not warned them of risks and negative effects of treatments . . . "6—the list goes on and on. Extreme discontent with contemporary health care pervades the women's stories in these volumes. A second theme is the political and cultural barriers to women's full and fair participation in the health care system. The majority of health caregivers are women, but they occupy primarily the low-status, lowpaying positions. As a result, women's voices are rarely heard in debates over the public and institutional health care policies and practices that shape our medical experiences. Although more women are becoming physicians, the sexism and sheer brutality of their training programs leaves many of them as detached and unhelpful as their male counterparts tend to be. For women consumers, health care is inextricably bound up with cultural concepts of female beauty and sexuality. Health is linked to the ideal (and often unhealthy) body type, while gynecologic care is tainted by shame and secrecy. Much of the Collective's material is designed to illuminate and protest the varieties of social degradation and neglect that pervade women's encounters with the health care system. The third broad theme is transformation. The medical care system must become more responsive to the needs of women and other historically disadvantaged groups. Society must attack the injustice and inequality that underlie the current unacceptable health care system. Most importantly, we ourselves must stop settling for the disrespectful, offensive, inadequate, and damaging treatment too often delivered by "modern" medicine. One of the movement's fundamental principles

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is that "we must know our own bodies and ourselves to be free from mistaken notions and the legacy of the patriarchal culture."7 The Collective's books are designed to reduce women's dependence on socalled "experts," whose knowledge and opinions are often distorted by sexism and other unfounded biases. In the pages that follow, I examine these three themes in more detail. Although the Collective's message is far too rich for easy summary, I attempt to describe at least its essential elements. I then consider its relevance to the bioethics field. Some of the same social forces triggered the "bioethics movement" and the women's health movement, primarily a revolt against medical paternalism and its abuses. But all is not harmonious. Although the groups do share certain beliefs and objectives, bioethics has been unresponsive to many of the women's health movement's paramount concerns. The women's health movement challenges bioethics to recognize that sexism in the medical care system is an ethical problem and to act on that recognition. The movement literature also provokes questions about the value of bioethical expertise and the assumption that bioethicists are neutral, objective, and free of the corrupting influences of the conventional health care system. The literature supports as well the contemporary reexamination of method in bioethics, by emphasizing the importance of attending to lived experience, as opposed to abstract principles. Finally, the movement supports a broader critique of health care than bioethics analysis typically offers. Too often, bioethicists focus on the micro-problems, leaving the larger systemic ones untouched. The women's health care movement dares bioethics to venture beyond its present comfortable niche to take on more fundamental injustices in the health care system. Some readers may question how extensively the women's health movement represents the experience of women patients. There may be concern that this is an elite and radical feminist group that cannot claim to speak for women in mainstream America. Yet the Collective literature makes an effort to present the views of women from widely diverse backgrounds and to include and respect views that depart from the "politically correct." In addition, although the literature is highly critical of much of orthodox medicine, it is a responsible critique. Medicine's potential benefits are recognized, as is the existence of many good physicians and other health care practitioners who depart from the unsatisfactory norm. Alternative treatment methods receive criticism as well as praise; women are warned that these methods may be ineffective and harmful, that practitioners of alternative therapies may exhibit disrespectful attitudes toward the women they treat, and that they may inappropriately blame people for their illnesses.8

What Bioethics Can Learn from the Women's Health Movement 147

The Critique of the Health Care System The women's health movement has harsh words for the health care system, physicians, medical education, and the medicalization of normal life processes. First, the health care system. A society truly interested in health promotion would attend to needs largely ignored by the conventional health care system. "Though medical care sometimes helps us when we are sick, it does not keep us healthy."9 Diet, exercise, stress, environmental quality, housing, workplace safety, and other related factors play a substantial part in determining our health. Moreover, "racism is a serious threat to health," and "poverty is the most basic cause of ill health and early death in our society."10 Yet the U.S. health care system tends to overlook these dimensions of health, concentrating instead on "rescue medicine." Too much attention is paid to drugs, surgery, and other acute interventions, as opposed to prevention and chronic care needs. Medical breakthroughs are trumpeted in the lay and professional media, while infant mortality and life expectancy statistics in the United States remain disgraceful compared with those of other developed nations.11 Moreover, medical training and the health care finance system give physicians strong incentives to perform surgery and other procedures for health problems that could be addressed through less invasive methods. The movement's critique of physicians is extensive. Women cite serious communication problems. Physicians frequently are patronizing, detached, disrespectful, racist, homophobic, and unwilling to trust the reports of their women patients.12 Subjective experiences of illness and treatment are frequently ignored. Thus, for example, physicians dismiss the sexual difficulties 33 to 46 percent of women report following hysterectomies, and the risk of such difficulties is not considered material enough to disclose to women deciding whether to undergo this procedure.13 Since medicine is still a male-dominated profession, women patients must contend with the typical male-female power imbalance, in addition to the usual imbalance characterizing the doctorpatient relationship. Yet the movement literature also wants women to claim some personal responsibility for this situation, for as patients, we often play along by adopting the dependent role and blaming ourselves for what goes wrong. Physicians are also criticized for presenting themselves as both moral and medical experts. Women who are unmarried and pregnant or have abnormal Pap smears are explicitly or implicitly labeled immoral and promiscuous. Physicians tend to blame patients for health habits that are highly influenced by social and economic factors, and many physicians reveal an abysmal lack of understanding of alcoholism and drug addiction. Furthermore, doctors exhibit an overriding need to be re-

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garded as infallible in their medical decision making. Many treatments are presented as unquestionably valuable when there is insufficient evidence to support this. As patients, however, "[o]ften what we need most is courage in the face of uncertainty."14 Overtreatment is common, particularly the performance of unnecessary hysterectomies; in contrast, primary care providers often do not perform the basic care, including breast and pelvic examinations, their female patients need.15 None of this is all that surprising, however, in light of how people are taught to become physicians. Medical education concentrates on conveying a massive amount of technical information, primarily through lectures and assigned reading. Clinical and deductive skills tend to be downplayed, with life-threatening conditions the focus, and health promotion and disease prevention largely ignored.16 In the latest edition of Our Bodies, Ourselves, the authors express skepticism about the prospects for educational reform, noting that not much has changed since 1973, when the first edition was published and "the then President of the American Association of Medical Colleges [AAMC] said that every medical student should read it."17 Despite their initial good intentions, students emerge from medical schools "almost invariably more cynical, detached and mechanistic" than they were to begin with.18 And residency training only makes things worse: "Composed of one part sleep deprivation, one part shutting off of all feelings and one part automatic response to orders in what is probably the most militaristic of all civilian disciplines, this training resembles a kind of brainwashing."19 Last, at the same time that our society and the existing health care system fail to confront the serious social deprivation lying at the root of many people's ill health, we are witnessing the medicalization of normal life processes in our culture. Medical professionals now claim to be experts in subjects that formerly were the territory of nonprofessionals. Thus, child rearing and aging are matters to discuss with our doctors, and they tell us how to be "good" wives, mothers, and so forth: Consider how often we are expected to go to physicians for normal life events. For our early sexual encounters we may expect to go to gynecologists for most birth control devices and perhaps even for advice about sex. During pregnancy we are urged to see obstetricians to be sure all is proceeding normally, and few of us have any alternative but the hospital for giving birth. . . . [O]nce the baby is born, we shift our gratitude and dependence to the pediatrician, so that even the first moments of mothering are conducted with an immediate sense of what our pediatrician thinks is right and proper. When we are depressed or having difficulties with personal relation-

What Bioethics Can Learn from the Women's Health Movement 149 ships, we are encouraged to seek the advice and help of a psychiatrist instead of talking with friends. . . . Medicine has [also] stepped up its treatment of menopause and aging as diseases. In a sense, the medical world defines women as inherently defective throughout life, in that we "require" a physician for all our normal female functions.20

Medicine's claim to expertise on all these matters encourages women to see these as medical problems rather than problems of life, fosters excessive dependency on medical professionals, reinforces traditional gender roles and discourages women from seeking help and guidance for many of these problems from each other.

Women as Caregivers and Health Care Consumers A look at the statistics shows that women predominate at all levels of the health care system except those offering power and prestige. "We are 85 percent of all 'health care' workers in hospitals, and 75 percent in the system as a whole."21 Women enter the health care system as patients more often than men; in addition, women are usually the primary informal caregivers for children, spouses, and aging parents. At the same time, a minority of physicians are women, although the numbers are gradually increasing.22 Women physicians offer both hope and disappointment to their female patients. Based on the reports of the women in Our Bodies, Ourselves, however, disappointment thus far prevails. Medical training involves male values and male dominance, and women often emerge from medical training "eager to prove that they can be as good as any male physician according to the male-centered criteria of the profession: clinical competence, emotional detachment and financial success."23 The time pressures and largely male faculty make it difficult for women medical students to lobby for change. Moreover, the oppressive environment can be overwhelming. As one student reports, "Every day we must choose between speaking up in a sexist situation or suffering in silence."24 To deal with the hostility, students may often adopt the strategy of resisting "any personal identification with other women students or with women patients."25 A recent account in the popular press by a 1988 medical school graduate now involved in the women's health movement is a harrowing reminder of the continued bias and hostility against women expressed by many faculty members. She reports a number of troubling incidents, including one that occurred in her first anatomy class. After remarking that their elderly female cadaver "must have been a Playboy bunny," the instructor told the students to "cut off [the cadaver's] large breasts and toss them into

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the thirty-gallon trash can marked 'cadaver waste; " thus signaling that breasts were not worthy of study, despite the high incidence of breast cancer among women in this country. Perhaps most disturbing, as she points out, is that "[f]emale medical students go through an ordeal, but at least it ends with graduation. It is the patients who ultimately suffer the effects of sexist medical education."26 Most women health caregivers are not physicians, however. Instead, women caregivers tend to be lowest in the medical hierarchy —"underpaid and undervalued"—and those caring for their children, parents, spouses, and other relatives are not paid at all.27 Women supply the physical labor to implement "doctors' orders," providing burdensome treatment regimens, special diets, and hygienic care.28 Women most often pay the personal costs of our society's failure to provide adequate care to elderly and disabled people, frequently giving up employment and other opportunities to care for others. "A familiar pattern is that when a man becomes ill or disabled, his doctor will send him home, commenting that he is lucky to have a wonderful wife to care for him. When the same thing happens to a woman, however, the doctor will recommend a nursing home."29 Besides the expectation that women will be nurturing and selfsacrificing in caring for others, society delivers messages on how women consumers should use the health care system to fulfill cultural norms of femininity. Body image issues are pervasive. Numerous health problems are blamed on overweight, but the matter is often more complex, and the concept of an "ideal weight" is itself problematic.30 Dieting usually fails to produce lasting weight reduction, and repeated dieting is a major cause of poor health. The modern "mass starvation of women" is analogous to foot-binding; "[f ]ear of fat keeps women preoccupied, robs us of our pride and energy, keeps us from taking up space."31 Sexual harassment, pornography, and other degrading social messages often lead women to consider gynecologic care an ordeal and something to be avoided.32 Cultural attitudes also cultivate shame and embarrassment about menopause, and drug companies proclaim the need for tranquilizers to make menopausal women "easier to live with."33 Cosmetic surgeons are ready and willing to remedy what their literature calls "deformities," such as wrinkles and fat deposits.34 In short, much of medicine is still promoting a patriarchal conception of female beauty and attractiveness, as opposed to a more natural and realistic definition of female health and well-being.

Goals for Change According to the women's health movement, drastic change must occur if we are to reduce the harm women experience in the health care

What Bioethics Can Learn from the Women's Health Movement 151 system. Change must occur not only in the system, but also in the women who encounter it. The most recent edition of Our Bodies, Ourselves maintains its disenchantment with the system and questions the potential for positive change. "The medical care system is too often unresponsive to women, deeply entrenched as it is in American economic, political, and social structures. . . . "35 Movement women believe the greatest hope for change comes from the woman consumer's acquisition of knowledge, for this can provide the basis both for presenting an authoritative critique and for becoming a less dependent and more assertive participant in the health care system. The requisite knowledge will come not only from medical professionals, but also from women patients and caregivers who have personally experienced the system. Women can learn from and teach each other about our bodies and the feelings associated with them, information which is too often left out by the experts. Furthermore, "[w]e want to reclaim the knowledge and skills which the medical establishment has inappropriately taken over."36 Alternatives can "complement and challenge" conventional medical care, although like standard medical interventions, alternatives should be used with caution.37 Goals include greater patient control and the demedicalization of childbirth, menstrual extraction, and even abortion, if it is performed by qualified nonprofessionals. Indeed, with restrictive abortion laws looming ahead, the Collective reports that a "largely underground" network of self-help groups has emerged in which some "experienced" participants perform early abortions.38 In addition, problems associated with menopause, pain control, and aging can often be adequately addressed in self-help groups. In the conventional system, women can move toward becoming more demanding consumers by "pressing for real answers to our questions, using other sources of information besides our doctors . . . , seeking second opinions . . . , and by bringing a friend to medical visits."39 Women can also work to become free of the negative cultural stereotypes associated with being female, old, nonwhite, and disabled. Narrow and constrictive concepts of female beauty and the shame associated with menopause and other "female problems" can be rejected. Honesty and humor about such matters as age and menopause can help. Accordingly, there are organizations such as the Older Women's League, publishers such as Crone's Own Press, and the "Hot Flash Fan" as art object.40 Numerous systemic changes are movement aims as well. First and foremost is for women to have the primary role in reshaping the system: "We believe that women, as the majority of consumers and workers, paid and unpaid, should have the major voice in health and medical care policy-making in this country."41 Among the more specific

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goals are the creation of health information centers for all consumers, more women's health centers, more alternatives to nursing homes, and a better system of respite care for at-home caregivers. Universal access to good health care is also a priority. In addition, the movement endorses antitrust and other challenges to the medical establishment's effort to suppress nonmedical alternatives such as home birth and midwifery.

Issues for Bioethics Many of the women's health movement's values and goals coincide with those of the "bioethics movement." A more humane, patientcentered health care system with less emphasis on acute, high-tech interventions is one shared aim. Others include promoting patient autonomy, greater access to health care, and a broader array of settings in which individuals may receive care. On the other hand, bioethicists have failed to address many serious issues raised by the women's health care movement. There are a few potential areas of conflict as well. In this section, I discuss questions and challenges the women's health movement poses for bioethics, and propose responsive actions for bioethicists. The women's health movement's loudest message to bioethics is that gender bias in the health care system is an ethical problem. Gender bias produces widespread violation of such basic ethical principles as autonomy, beneficence, nonmaleficence, and justice. Respect for persons often falls by the wayside when the persons—patients, medical students, nurses, and other paid or unpaid caregivers—are female. Harm is done to women by the current health care system. And gender bias is a pervasive source of injustice. Like other players in the health care system, bioethicists are due for some serious consciousness-raising about women's issues. Bioethics teaching and writing has been largely gender-neutral; reproductive ethics is the sole area in which gender has received concentrated attention. Although there are a few exceptions in recent literature,42 on the whole bioethicists have seldom looked beyond reproduction in taking gender into account. Yet, as the movement reminds us, gender issues permeate the culture of biomedicine. To address the current ethical gap, bioethicists need to get better at seeing these issues. The women's health movement critique of medical education raises issues for bioethicists teaching in medical schools and residency training programs. If one of the bioethics field's professional aims is to promote patients' interests and well-being, bioethics education should be more responsive to the complaints voiced by movement women. But what role can and should we bioethicists have in challenging medical training's harsh and gender-biased character? Several possibilities come

What Bioethics Can Learn from the Women's Health Movement 153 to mind. First, we can make special efforts to support women (and men) medical students who encounter sexism in their courses or other training activities and who are too intimidated to speak to the perpetrators. The bioethicist's position in the medical school hierarchy has both benefits and drawbacks in this context. We generally do not have the prestige of neurosurgeon Dr. Frances Conley, whose 1991 resignation from Stanford Medical School to protest its widespread sexism triggered immediate remedial efforts there.43 Yet students and residents may perceive us as more approachable than other faculty members, so that we are more likely to hear about these matters. Although it may be difficult, we can often work with other concerned faculty members to address individual cases and to promote systemic change. Every medical school and hospital should have a grievance committee to which complaints may be addressed without fear of reprisal. Bioethicists whose institutions lack such a committee or fail to publicize adequately its existence have a clear opportunity, even a duty, to lobby for action on this front. Other issues for bioethicists arise not only in formal medical education settings, but in our case consultations and other work with practicing physicians. We can challenge unjustified assumptions about women patients and about women as automatic caregivers. We can help physicians and future physicians to be better communicators with their patients. We can show equal respect for the work of the underpaid and undervalued women who keep the health care system going. We can attempt constructive intervention in what has been called the "doctor-nurse game." And we can question the assumption that physicians are always the ideal healers, by working with nursepractitioners, nurse-midwives, and other caregivers who may offer women more satisfying healing relationships. There are many obvious opportunities for speaking out on gender bias in reproductive medicine, and bioethicists have already been active in this area. But the women's health movement literature shows that women have health care concerns that extend far beyond having healthy babies. There is a strong need for education on an expanded array of women's health issues in departments of gynecology, internal medicine, family medicine, psychiatry, and plastic surgery, among others. The women's health movement literature also reminds us of the numerous difficulties women may encounter in receiving primary care. Bioethicists have not devoted adequate attention to teaching activities for medical staff working in this area. Instead, we have often opted for the more glamorous, high-technology intensive care units, in vitro fertilization programs, and so forth. The movement literature is strong evidence that we have neglected the daily and more mundane medical care that affects many more people in this country.

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We should also recognize that the women's health care movement is one of the most well-organized, vocal, and articulate consumer groups in the United States. What its representatives say probably captures the experiences of many more patients who are less assertive. Thus, movement representatives and publications are a resource for bioethics teaching. Selections from the publications can be included in bioethics courses and case conferences. The 1973 AAMC president was right in saying that every medical student should read Our Bodies, Ourselves, and much of this book is highly relevant to issues commonly discussed in medical ethics courses. In some communities, it may be possible to enlist movement representatives to participate in courses or address a wider medical school audience. It is intriguing to contemplate a grand rounds presentation by a member of the Boston Women's Health Book Collective. Feminist health centers also offer bioethicists a setting in which to observe and perhaps participate in alternative models of health care delivery. The women's health movement literature also offers methodological direction for bioethics. Our Bodies, Ourselves and other Collective publications present a rich diversity of individual women's experiences, and take these detailed accounts to constitute women's experience in the American health care system. The message is that one must attend carefully to the particular before moving to general statements or principles. The publications' format alternates between individual women's stories and more general accounts of health care in the United States. The stories reflect a variety that includes unpopular positions. For example, the authors note that although women generally want greater access to information about their conditions, "some women would rather not know they have cancer at all."44 This approach is consistent with the newer emphasis on narrative and casuistry in bioethics analysis, as opposed to the more traditional, principle-based approach of moral philosophy.45 Here, ethical content emerges from individual women's lived experiences.46 The women's health movement publications reinforce the view that we miss a great deal if we overlook what happens at the individual level. At the same time, the movement also urges bioethics to look beyond the particular to the numerous systemic problems in health care. Bioethics teaching and writing tend to focus on problems between individuals. The analysis typically discusses how a person, usually a physician, might act to advance important ethical concerns. The problem is that individuals have limited freedom to be ethical if they must operate within the confines of an unjust system. If the system itself is seriously flawed, the most pervasive ethical violations remain. The women's health movement stresses the health care system's macro-level deficiencies: restricted access to care, misallocation of resources, inhuman-

What Bioethics Can Learn from the Women's Health Movement 155 ity in medical education, and the medical establishment's power over health care delivery, among others. The message is that bioethicists should attend to the context of health care decision making and be willing to challenge the broad picture when this is appropriate. Perhaps the greatest challenge for bioethics lies in the women's health movement theme that "the personal is political." How we conduct ourselves in our work and how we care for our own health sends messages to others, messages that can be more powerful than any of our formal teaching and writing. For example, when we are involved in bioethics consultations and ethics committee discussions in our work, do we bother to talk to the patient, and in appropriate cases, her family? Or do we remain impersonal and objective, behaving in the manner we so often criticize in doctors? Do we purport to have objective ethical positions on appropriate case resolutions, or do we acknowledge that our race, ethnicity, class, and personal encounters with the health care system inevitably influence the ways we see specific bioethical dilemmas? Finally, do we treat nurses, dieticians, physical therapists, and other health care staff members with the same respect we show toward physicians? The women's health care movement also asks us to look at our own lifestyles. The health care system tends to make extreme demands on medical students and professionals. Indeed, a person's quality and dedication seem to be judged according to the individual's willingness to sacrifice personal well-being for professional commitments. This reward structure too often produces overworked and overwhelmed caregivers who lack the time and energy to pay much attention to their patients.47 Do bioethicists simply buy into this distorted arrangement by adopting the same practices? In an effort to be accepted and valued by members of the medical establishment, we may too easily adopt many of their problematic habits. Alternatively, by taking care of ourselves and by questioning our medical colleagues' failure to do the same, perhaps we can have a humanizing influence. In addition, we should examine our relationships with our own physicians. Do we challenge the behavior we criticize in our teaching and writing? It is problematic to argue for change in the doctor-patient relationship if we lack the courage to demand it in our own. In a larger sense, these points challenge the political position of bioethics today. Too many bioethicists have proudly assumed the same problematic role we have criticized in physicians. It is all too easy to present ourselves as neutral, objective experts on dilemmas that touch the very essence of the people experiencing them. According to conventional wisdom, the absence of a personal connection to these dilemmas is one of the bioethicist's virtues, enabling her to consider all perspectives and interests with fairness and wisdom. But I fear that this

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lack of connection too often leads the bioethicist simply to parrot accepted principles, pronounce an ideal resolution, and make a quick getaway, leaving patients, families, and the health care staff to confront the real burdens of decision. It may be that in many of today's health care settings, the bioethicist poses even more danger to patients than physicians do. To a great extent, "Doctor Knows Best" has been replaced by "Bioethicist Knows Best." Moreover, we bioethicists have a built-in bias. If we have any personal connection to the people involved in conflicts over patient care, it is to the physicians and other staff members who are our professional colleagues. Our allegiance to the people we see every week, indeed, to the people whose very invitation is a prerequisite to our participation, can diminish our ability to empower patients and families. The women's health movement critique should lead bioethicists to engage in honest self-appraisal about the degree to which we have become members of the health care establishment. Have we really disturbed the power structure at all, or do we simply help medical decision makers feel better about what they would have done anyway? In becoming accepted as medical school teachers and hospital consultants, we may have lost our critical edge. Can we honestly say that life for medical care consumers has improved since we came on the scene? The message of the women's health movement is that for many, it has not. We bioethicists should hear that message and examine our own responsibility for this situation. There are other areas of potential conflict between the women's health movement and bioethics. One involves the appropriate stance for bioethicists to take on alternative healing methods and self-help groups. How are we to respond, for example, to the current resurgence of self-help programs, in which women "explore home remedies for infection" and perform menstrual extraction to remove the contents of the uterus during menstruation or early pregnancy?48 The women's health movement endorses menstrual extraction as a way to "empower women to take abortion away from the medical establishment," and groups claim to have very low rates of infection and other complications.49 I am not sure how bioethicists should approach this with medical students, health care professionals, and patients. And the problem will only be exacerbated if access to abortion becomes more restricted. In some states, physicians and other health care workers may face difficult choices, such as whether to refer pregnant adolescents seeking abortions to self-help groups. Bioethics must prepare to respond to these problems. In sum, the women's health movement's literature and activities offer bioethicists an opportunity to expand and enrich our picture of contemporary American health care—its problems, benefits, and potential

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improvement. For bioethicists seeking to ground their work in the lived experiences of participants in the health care system, here is an excellent resource. For those who believe the field is becoming complacent, here is a place to find new challenges, particularly in strengthening and reshaping the bioethicist's role in medical education. For those who want to examine bias in the health care system based on gender, race, class, and disability, here is a wealth of material. Bioethicists should take advantage of these riches. Moreover, participants in the women's health movement should look to bioethics as a potential ally in many of their reform efforts. Greater exchange between the two endeavors could serve to invigorate everyone.

Notes Thanks to Susan Wolf, Laura Purdy, and the other members of the Hastings Center Feminism and Bioethics Project for their help with this chapter. The first three quotations and the quotation at n.20 are reprinted by permission of Simon & Schuster, Inc. Copyright ® 1984, 1992 by The Boston Women's Health Book Collective. 1. Boston Women's Health Book Collective, The New Our Bodies, Ourselves: A Book By and For Women (New York, NY: Simon & Schuster, 1992), 657 [hereinafter New Our Bodies, Ourselves]. 2. Ibid., 658. 3. Ibid., 332. Recurrent yeast infections can be a sign of HIV infection in women, but many physicians are unware of this. Ibid., 329, 332-33. 4. The women's self-help health movement is decentralized and multifaceted. Settling on a rigid definition of who and what belong in it would offend movement ideals. Essentially, though, it encompasses a variety of efforts to empower women in the health care system. It includes national and grassroots political organizations. For example, the National Black Women's Health Project is a grassroots advocacy group that promotes development of self-help groups among low-income African American women. Ibid., 705. The National Women's Health Network provides health information to women, monitors health-related regulatory agencies, and reviews proposed federal legislation for its attention to women's interests. Ibid., 704-05, 708. The women's health movement also includes certain women's clinics. The Federation of Feminist Women's Health Centers (FFWHC) is a national network of women's clinics located across the country. Ibid., 702-03, 710. Probably most basic to the movement are the community self-help groups for women that meet primarily to share information and personal stories. Ibid., 702. I would also include as part of the movement print and other materials designed to deliver health information to women consumers. The Boston Women's Health Book Collective's publications represent the most extensive of these efforts. Some organizations and feminist health centers publish newsletters and other periodicals. The FFWHC has issued publications, including A New View of a Woman's Body and How To Stay Out of the Gynecologist's Office, and the National Black Women's Health Project has produced a manual on developing self-help programs. See New Our Bodies, Ourselves, 641, 708, for instructions on how to obtain these materials.

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For additional information on the women's health movement, see Claudia Dreifus, ed., Seizing Our Bodies (New York, NY: Vintage Books, 1978); Sheryl Ruzek, The Women's Health Movement: Feminist Alternatives to Medical Control (New York, NY: Praeger, 1978). 5. Boston Women's Health Book Collective, Our Bodies, Ourselves, 2d ed. (New York, NY: Simon & Schuster, 1979), 11 [hereinafter, Our Bodies, Ourselves]. 6. New Our Bodies, Ourselves, 652. 7. Pamela Brown Doress, Diana Laskin Siegal, and the Midlife and Older Women Book Project, Ourselves, Growing Older (New York, NY: Simon & Schuster, 1987), xiii [hereinafter Ourselves, Growing Older]. 8. New Our Bodies, Ourselves, 82. 9. Ibid., 19. 10. Ibid., 655-56. See also Patsy Westcott and Lydia Black, Alternative Health Care for Women (Rochester, VT: Healing Arts Press, 1987). 11. Further, women are denied equal benefits from research advances, because research has been conducted primarily on white male subjects. Thus, drugs and other interventions are frequently put on the market before their benefits and risks to women consumers have been adequately assessed; as a result, women patients become "guinea pigs." Movement literature advises women not to take "any drug that's been on the market for less than four years, unless you're willing to be part of an experiment." Ourselves, Growing Older, 30. Concern about excluding women from biomedical research study populations has recently been recognized by the federal government as a serious problem. See Rebecca Dresser, "Wanted: Single White Male for Medical Research," Hastings Center Report 22 (Jan.-Feb. 1992): 24-29. 12. New Our Bodies, Ourselves, 673-74. 13. Ibid., 600-01; Ourselves, See also Sue Fisher, Growing Older, 296. In the Patient's Best Interest: Women and the Politics of Medical Decisions (New Brunswick, NJ: Rutgers University Press, 1986), 29-41. 14. New Our Bodies, Ourselves, 674. 15. Fisher, In the Patient's Best Interest, 46, 100-02. 16. New Our Bodies, Ourselves, 663. 17. Ibid., 666. 18. Ibid., 644. 19. Ibid., 664. 20. Ibid., 656-57. 21. Ibid., 652. 22. See Charlotte Muller, Health Care and Gender (New York, NY: Russell Sage Foundation, 1990), 9-11, where the author reports that in 1983, women physicians were 15.5 percent of all physicians; a similar percentage of women obstetrician-gynecologists existed at that time. 23. New Our Bodies, Ourselves, 668. See also Fisher, In the Patient's Best Interest, 39. 24. New Our Bodies, Ourselves, 666. 25. Ibid. For discussion of student abuse and sexual harassment and misconduct in medical training, see Miriam Komaromy et al., "Sexual Harassment in Medical Training," New England Journal of Medicine 328 (1993): 322-26; Frances K. Conley, "Toward a More Perfect World—Eliminating Sexual Discrimination in Academic Medicine," New England Journal of Medicine 328 (1993): 351-52; K. Harnett Sheehan et al., "A Pilot Study of Medical Student 'Abuse,' " Journal of the American Medical Association 263 (1990): 533-37.

What Bioethics Can Learn from the Women's Health Movement 159 26. Adriane Fugh-Berman, "Tales Out of Medical School," The Nation, January 20, 1992, pp. 37, 54-56. Some women physicians are calling for the creation of a women's health specialty to remedy the current deficiencies in the health care women receive. See Tamar Lewin, "Doctors Consider a Specialty Focusing on Women's Health," New York Times, November 7, 1992, pp. 1, 9. 27. New Our Bodies, Ourselves, 669. 28. Ibid., 652. 29. Ourselves, Growing Older, 199. See also Elaine Brody, "Women in the Middle," Gerontologist 21 (1981): 471-80, describing caregiving of elderly parents by younger and middle-aged women raising their own children as well. For discussion of the "ethic of care," see, for example, Joan Tronto, "Women and Caring: What Can Feminists Learn About Morality From Caring?" in Alison M. Jaggar and Susan R. Bordo, eds., Gender/Body/Knowledge: Feminist Reconstructions of Being and Knowing (New Brunswick, NJ: Rutgers University Press, 1989), 172-87. 30. New Our Bodies, Ourselves, 26. 31. Ibid., emphasis deleted. 32. Boston Women's Health Book Collective, "Resurgence of Self-Help Programs," Ms., July/August, 1991, p. 94; Fisher, In the Patient's Best Interest, 96. 33. Ourselves, Growing Older, 116. 34. Ibid., 41. 35. New Our Bodies, Ourselves, 653. 36. Ibid. 37. Ourselves, Growing Older, 338; New Our Bodies, Ourselves, 82. 38. Boston Women's Health Book Collective, "Resurgence of Self-Help Programs." See also "Women Turn to Self-Help Groups For Abortions, Despite the Risks," New York Times, September 9, 1992, p. 13. 39. New Our Bodies, Ourselves, 659. 40. Ourselves, Growing Older, 116, 121-22, 404, 409-10. 41. New Our Bodies, Ourselves, 653. 42. See, for example, Nancy Jecker, "Age-Based Rationing and Women," Journal of the American Medical Association 266 (1991): 3012-18, and Steven H. Miles and Allison August, "Courts, Gender and 'the Right to Die,' " Law, Medicine & Health Care 18 (1990): 85-95. 43. Marcia Barinaga, "Sexism Charged by Stanford Physician," Science 252 (1991): 1484. 44. Ourselves, Growing Older, 332. 45. See, for example, Kathryn Montgomery Hunter, Doctors' Stories: The Narrative Structure of Medical Knowledge (Princeton, NJ: Princeton University Press, 1991), and Stephen Toulmin and Albert Jonson, The Abuse of Casuistry (Berkeley, CA: University of California Press, 1988). 46. See Virginia Warren, "Feminist Directions in Medical Ethics," Hypatia 4 (Summer 1989): 73-88.

47. Ibid., 78.

48. Boston Women's Health Book Collective, "Resurgence of Self-Help Programs." For a recent discussion of how practitioners of conventional medicine should deal with alternative medicine, see Raymond Murray and Arthur Rubel, "Physicians and Healers—Unwitting Partners in Health Care," New England Journal of Medicine 326 (1992): 61-64. 49. Boston Women's Health Book Collective, "Resurgence of Self-Help Programs."


II FEMINIST PERSPECTIVES ON SPECIFIC PROBLEMS IN BIOETHICS


6 A Feminist View of Health Laura M. Purdy

We usually take it for granted that we know what health is. Yet fringe cases show that the concept is fuzzier than it seems. Are small breasts, for instance, a disease?1 Even a brief excursion into the literature on the concept shows that health, although we value it highly, is not easily defined.2 Yet developing a clear and coherent definition is necessary, both for personal decision making and for good health policy.3 Health is commonly regarded as the absence of physical disease or infirmity. A more sophisticated notion of health is the World Health Organization (WHO) definition, "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."4 This depicts the concept of health as both broader (including mental and social well-being) and deeper (requiring positive wellbeing). These expansions also hint at a more complex explanation of the origins of good health by suggesting that factors promoting or eroding well-being may be relevant. This more demanding WHO definition of health has triggered much debate.5 Most of it addresses the proper roles of mental and social factors. Considerably less attention has been focused on whether being healthy requires a state of positive well-being rather than the mere absence of disease or infirmity. What difference might a feminist perspective make in evaluating such questions? It seems safe to say that the more relationship- and context-oriented outlooks common to many emerging feminist ethics6 would tend to favor more expansive rather than narrower conceptions

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of health. Such approaches would refuse to look at physical health in isolation from other forms, and the individual in isolation from her context. However, a feminist outlook would also be vigilant in guarding against the special dangers such expansive conceptions pose for women and other subordinated groups.7 What are these special dangers? When mental and social well-being are considered part of health, people's whole lives enter the picture. But the well-being of members of subordinated groups, such as women, tends to be defined by their superiors for their own pleasure and convenience. So a healthy woman, historically, has been seen as some variation on the theme of helpmeet, playmate, and mother.8 And when well-being rather than mere absence of disease is required, that can entail the kind of risky perfectionism that encourages arsenic for white skin and corsets or breast implants for the "right" effect. A feminist conception of health must therefore involve critical analysis of a far wider range of issues than might at first be apparent. What kind of definition might feminists urge, then? I first examine how broad a notion is desirable. I argue that a definition of health should include physical and mental health, but exclude "social health." I then turn to the issue of depth: Are there good feminist reasons to prefer the view that health is only the absence of disease, or should we insist on positive well-being? I argue for an insistence on wellbeing, even though it is very difficult to develop a concept of wellbeing uninfected by sexism. Attempting that compels us to examine both objective and subjective barriers to well-being. By attending to both, we can begin to develop a feminist conception of health.

How Broad a Definition? Susan Sherwin, in her very helpful discussion of the concept of health, begins by underlining the power of those in medical authority to define illness. Women, she argues, have been especially harmed by this power. It has led, among other things, to the bizarre conclusion that we are never quite well: pregnant or not pregnant, menstruating or not, there is always something wrong.9 Because such a judgment invites medical tinkering (as well as social consequences such as exclusion from the work place), the question of how broadly health should be defined is of frighteningly immediate concern to us. Indeed, related considerations such as these have motivated efforts by Daniel Callahan and Christopher Boorse to narrow the WHO definition to the physical domain.10 They argue that the social and mental realms are more value-laden than the physical one, so including them in the definition inappropriately extends the power of medical authorities. There are, Sherwin says, good feminist reasons for agreeing with

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Callahan and Boorse, since it is doubtful that "medical training creates expertise in areas of social and emotional life. Medical authorities, with their relatively homogeneous class backgrounds, should not be authorized to make unilateral decisions about life-style questions, such as the 'healthfulness' of homosexuality."11 Yet there are problems with narrowing the definition. Sherwin rightly questions whether "personal lives can be neatly fragmented into physical, mental, and social components so that one element can be 'treated' in isolation from the other two." The factors in each realm influence the others. There are also pragmatic reasons for urging a broader view, namely, that "various bureaucratic structures refuse to consider factors other than health as legitimate grounds for support of individuals in need."12 Moreover, even the physical domain may be seriously value-laden. According to H. Tristram Engelhardt, Jr., physical disease and disability are not recognized unless they are experienced as a problem.13 His point is beautifully illustrated in an article on masturbation as a disease, where he shows how moral attitudes have shaped observation and explanation of alleged symptoms.14 A shift from moral language to what he calls the "language of natural teleology" lends plausibility to certain kinds of explanations:15 the concept of the disease of masturbation developed on the basis of a general suspicion that sexual activity was debilitating. This development is not really unexpected: if one examines the world with the tacit presupposition of a parallelism between what is good for one's soul and what is good for one's health, then one would expect to find disease correlates for immoral sexual behavior. . . 16

What would all of this suggest with respect to the desirability of a broader or a narrower definition of health? A narrow definition might be more attractive if it kept us on safe territory by guaranteeing objective claims about the nature of health. If by sticking to the physical and leaving aside any notion of mental or social disease it were possible to discriminate between health and disease without making judgments about the good life, then there might be some advantage in so doing. It might safeguard women from the grotesquely inaccurate judgments of what constituted mental and social health that they were subjected to in the nineteenth century as they sought education and a place in the public world.17 Men, although somewhat protected from such distorted views by their generally superior position, have not been completely free of them either.18 But if Engelhardt's thesis holds, a restricted focus on physical ailments provides no such haven from value judgments. Then if there

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are good reasons to prefer a broader definition, we should do so. Are there such reasons? Sherwin's point that bureaucracies are now more likely to recognize medical rather than purely social needs suggests one. Perhaps it would be unwise to push this argument too far, but at a time when it is imperative for many to get help any way they can, it is difficult to disagree with a reasonable policy that achieves that end. Another reason for accepting a broader view that encompasses at least mental health is the argument for the existence of mental disease. The view that mental disease does not exist is unpersuasive,19 despite the difficulties in defining it. We can expect further research to help clarify the origins and treatability of disorders. Most critical here is disentangling the less controversial arguments about desirable functioning and mental disease from the more clearly questionable claims. The latter include not only many assertions about sexual behavior and defiant or "antisocial" conduct, but also assertions about the behavior of traditionally subordinated groups like women. The larger claim that we can set standards for the "social health" of an individual is unappealing, however. Claims such as these have subjected many to strictures—once apparently taken with the utmost seriousness—that clearly are grotesque. The prescriptions leveled at women are by now quite well known and show how easily the perceived interests of those in power can be dressed up as medical wisdom.20 This pitfall is still more horribly evident in an 1851 report entitled "Report on the Diseases and Physical Peculiarities of the Negro Race," by Samuel A. Cartwright, who was mandated by the Medical Association of Louisiana to investigate this subject.21 According to Cartwright, not only do anatomy and physiology fit African Americans to subordination, but only thus are they healthy and happy. Indeed, freedom can lead to the serious illnesses of "Drapetomania," the disease causing slaves to run away, and "Dysaesthesia Aethiopis," the cause of "rascality." One might object that such perversions do not demonstrate that there is no useful work to be done by the concept of individual "social health," only that it can be abused. Let me suggest, however, why we are better off without such a concept. First, eliminating "social health" does not prevent us from seeing how physical or mental disease can be caused by social arrangements or how physical or mental problems can lead to social oppression. Thus we could well conclude that malnutrition is a consequence of bad social policy or that bad policy can intensify the disabling effects of schizophrenia or deafness. Second, the important aspirations behind the term "social health" can be better stated in nonmedicalized terms. That is, we can argue that emotionally abusive relationships or exploitive forms of family life are bad for women without re-


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course to the concept of social health. Using moral and political rather than "health" language reminds participants in the debate of the need for public argument and justification rather than medical assertion. It is tempting to believe that our insights into the past perversion of medical language should be a shield against any similar contemporary misuse, but that seems doubtful. Third, avoiding the language of "social health" avoids an improper extension of medical authority. Medical professionals have no special expertise in evaluating what are good or bad social behaviors for individuals. Those questions are fundamentally not medical, and so should not be assigned to those in medicine by using the language of "health." The special risks run by women, as well as other outsiders, should therefore lead feminists to resist the extension of health to include social "health."22 What, then, of the other dimension of the concept? Is health the mere absence of physical or mental disease, or should it be viewed as requiring a state of positive well-being?

How Deep a Definition? According to the WHO definition, health is not the mere absence of disease or infirmity, but a state of positive well-being. Those who write on this question comment regularly that health is indeed more than such absence. Leon Kass notices that among pediatricians, with their well-baby clinics and their concern for normal growth and development, we can in fact see medicine clearly pointing to an overall good rather than away from particular evils. The same goal also informs the practices of gymnastics (physical fitness programs) and of dietetics. Together, these examples provide a provisional ground for the claim that health is a good in its own right, not merely a privation of one or all evils.23

Caroline Whitbeck concurs, suggesting in turn that health is the integration of various capabilities and capacities in the service of our interests.24 She sees health as a concept that (like physical fitness, one of its components) is appropriately defined in rather general terms. Thus, for example, to be physically fit is to have good muscle tone and circulation, strong bones, and a powerful heart. Not only do these features enable the fit to engage successfully in various physical activities, but they also help fight off disease and promote healing when disease does strike.25 In her view, there is a necessary connection between health and resistance to disease or disability.26 Positive well-being plays a significant

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part in the ability to stay free of disease and infirmity.27 This is a plausible view, for which evidence could easily be marshaled, and which is most obviously supported by the differences in morbidity and mortality among the social classes.28 This fact poses special problems for many people. Women, for example, have a long history of being seen as mere handmaidens of autonomous men. And although there has been much progress for women in some countries, both in eradicating legal distinctions harmful to us and making possible a wider array of social roles, the war for equal consideration of our interests is hardly over.29 Women and men who are members of other socially oppressed groups also face lack of equal consideration of their interests.30 As a result, the objective conditions conducive to achieving a positive state of well-being are more often available to wealthier, wholebodied, heterosexual, white men than to others. The damage to the rest of us shows up both in the objective conditions of our lives—our limited resources, dangerous neighborhoods, and the like—and also in subjective internalized attitudes that often prompt us to behave in ways that undermine our health.31

Objective Barriers The kinds of problems faced by the less privileged can be illustrated by the situation of women. Women's difficulty getting even the basic care needed to cope with disease or disability is only now beginning to get the analysis it deserves; parts of that analysis are ably extended elsewhere in this volume.32 Some problems, like the dominance of relatively well-to-do white males in medicine and the sciences, their tendency to take our health problems less seriously than men's, and our exclusion from research affect all women.33 Others, like racial prejudice or poverty hit specific groups of women particularly hard.34 Thus it is not at all uncommon for women to be unable to get care because of lack of money, health care insurance, or time. The care we do get is often less than optimal. Because of the gravity of these fundamental impediments to good health, concern about positive well-being seems almost Utopian. But since, as Whitbeck suggests, well-being is a necessary part of freedom from disease and disability, we should not accept that judgment. Moreover, well-being is intrinsically desirable: it feels good, and feeling good is one of our most important interests. What does well-being require? There seems to be, at the individual level, significant overlap in the steps people can take to ward off disease and those that help us to feel good. In a 1972 study that is still relevant, Nedra Belloc and Lester Breslow studied the health habits


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of a wide range of individuals.35 The health practices they examined were basic: 1. 2. 3. 4.

Sleeping seven to eight hours a night Eating breakfast Refraining from eating between meals Keeping within a few pounds of your recommended ideal weight 5. Engaging frequently in active sports or exercise 6. Drinking alcohol moderately or not at all 7. Refraining from smoking

Their study demonstrated a general correlation of health habits with health and longevity. The authors stated that males 55 to 64 who adhered to all of the rules were about as healthy as those aged 25 to 34 who adhered to from none to two. Mortality was likewise affected.36 These rules are based on folk advice and so are imprecisely stated. They would need to be updated both with respect to content (what is "your recommended ideal weight"?) and scope (what about safer sex and seat belts?). But most people know perfectly well that although overeating, drinking, and smoking give immediate pleasure, they also cause us to feel worse even in the not-very-long run. And even the sedentary know that they need exercise. So why does everybody not follow rules of this kind? Some people are truly unaware of them, while others have only very superficial knowledge. That could be remedied by better education. Another obstacle is weakness of will. We do not always have the determination to do what we should. Some writers are content with these answers and simply exhort us to do better. The problem for many, however, is that there are serious objective deterrents to our doing so, deterrents that could be alleviated by better social arrangements. What are they? The threat of violence in public places is a serious obstacle for women. It can cause severe injury, erode psychological well-being, and make healthy behaviors such as outdoor exercise impossible. Regular exercise, as well as adequate sleep and healthy eating patterns are discouraged by lack of financial resources, work, and poor living conditions. Extended work hours, long commutes, and, for women, the double load required by household duties and outside work leave us with little time or energy.37 Even large-scale problems such as environmental pollution are relevant. Pollution discourages the kind of outdoor exercise that is healthiest and most accessible. Consider the implications of living in cities such as Los Angeles, Athens, or Bangkok, where to stay healthy you really should not breathe the

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air. This problem is exacerbated for the poor, since they tend to get stuck with the most toxic environments. Given such facts, appealing to individual responsibility for health is for most people premature. Even if society were to undertake the major reforms necessary to eradicate these problems, further social action would be required to help people follow good health habits. Getting rid of the cigarette and food advertisements beckoning us from every magazine and billboard, not to mention your handy local drug pusher, would help. Subsidizing exercise areas and programs, and ensuring access to healthy food would be another constructive social change. Many excellent suggestions of this kind have been made, and it is now past time to start implementing them.38 Still more fundamental changes would be required to get at the source of health problems afflicting certain social groups, however. Consider the difficulties women face in particular. Our most general problem is that we have many fewer resources than men—money, time, and power—yet we are expected to do more with them, including bear and nurture children. As suggested above, significant numbers of women are unable to get even minimally adequate care for themselves. Their inability to get good care for their children adds to distress and need for income. Poverty or ignorance may limit their capacity to create and maintain a safe, healthy environment for themselves and their children. Women's social roles, despite increased support for women's self-definition, are still far more limited than men's roles.39 Although they vary according to a particular woman's social context, they tend to be demanding, contradictory, and not necessarily in tune with her nature and interests. Relatively privileged women are usually able to avoid the more obvious threats to health, although subtle but still powerful pressures often exert damaging power. They are expected to be thin and fashionable, have successful and remunerative careers, yet nurture families. And despite their greater power to escape from violence, they too remain vulnerable to both its private and public varieties. In short, stereotypes and inequality limit women's ability to protect our health. Thus many people now face both serious obstacles to and lack of encouragement for developing the kind of health habits that would help repel serious health problems and create physical well-being. There are already strong independent moral reasons for making the relevant social changes. The importance of health is yet another reason for doing so. Many of the deterrents to health so far discussed involve objective barriers that require dismantling before we as a society can realistically aspire to a concept of health that calls for positive well-being. I have also alluded to more subtle barriers. These involve beliefs rather than


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legal or social arrangements. They undermine health in at least two ways. First, they underlie and are taken to justify inequitable arrangements. Second, although they appear to be independent of those arrangements, they reinforce the inequities by making them seem voluntary or otherwise acceptable. It is such beliefs that I consider next.

"Subjective" Barriers All humans are shaped by socialization, which includes the communication of a variety of beliefs limiting acceptable behavior. But oppressed groups are the subject of additional beliefs that support and reinforce their oppression. Women as well as members of certain ethnic groups are often stereotyped as inferior in intelligence or character. Such stereotypes are then taken to justify social arrangements that simply reinforce the stereotypes. That tends to transform the stereotypes into self-fulfilling prophecies by creating barriers against which members of the relevant groups must struggle. The strictures that apply to women are of special interest here since they are so focused on the body and have direct impact on physical well-being. Sandra Bartky argues that "the disciplinary project of femininity is a 'set-up': It requires such radical and extensive measures of bodily transformation that virtually every woman who gives herself to it is destined in some degree to fail."40 Bartky finds our vision of femininity historically specific: these days, women are no longer required to be chaste or modest, to restrict their sphere of activity to the home, or even to realize their properly feminine destiny in maternity: Normative femininity is coming more and more to be centered on woman's body—not its duties and obligations or even its capacity to bear children, but its sexuality, more precisely, its presumed heterosexuality and its appearance.41

Despite the logic of these standards, they do not seem to be the products of any official power; hence they are construed as "either entirely voluntary or natural."42 Consequently, their ultimately oppressive character is masked: "Making up is merely artful play; one's first pair of high-heeled shoes is an innocent part of growing up and not the modern equivalent of foot-binding."43 These imperatives have received considerable attention lately.44 Much of it has been focused on the pressures felt most strongly by white, middle-class women. Since I too am white and middle-class, my comments here will of necessity be culturally bound. Women are subject to a wide array of conflicting demands about how our bodies should look and move. Not only do different people have different concepts, but particular individuals may have conflicting

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demands over time, or even at the same time. So some people (mostly men) think that women should be ladies, whereas others expect us to be more daring; some prefer us thin and blond, others see us only if we are voluptuous brunettes. The very language used here is revealing, as adjectives turn into nouns with no masculine counterpart: only women are brunettes—dark-haired men are men with dark hair. Likewise, the stereotypes demand that we age a certain way: a body judged ravishing in a twenty-year old may be found tasteless at fifty. Worst of all, perhaps, are the contradictory demands to which we may be subjected: few chic clothes are designed to accommodate big breasts, but some men want to see both. These demands coincide, in any case, only accidently with our natural endowments or with what we might choose in their absence. Each of us internalizes a different mix of demands, including the conflicting ones, but few among us escape them entirely. They affect our feelings about ourselves, especially with respect to such fundamental issues as reproduction, beauty, sex, pleasure, and strength. Our appearance can be deeply affected by the demands of reproduction. Premenstrual syndrome often causes our bodies to swell, and pregnancy too obviously interferes with the more general aesthetic requirement that women be thin. Conversely, the extreme leanness required for beauty today can suppress ovulation, making pregnancy impossible. The demands of beauty are, despite the demise of foot-binding and tight corsets, still considerable. Women must meet certain standards, most of which involve body parts over which it is difficult if not impossible to exert control. We are (or should be) infuriated by such pronouncements as "The big bosom is back!" Apparently we are supposed to get breast implants that year. And have them removed the next when the same fashion writer announces that trim is now in.45 Worse yet, many of us seem to internalize the view that we deserve love and sex only if we are beautiful, which means meeting the reigning standards. These pressures and contradictions have been the subject of considerable attention. But to be aware of them is neither to abolish them, nor even necessarily to help ourselves learn to cope with them intelligently. Most thinking has so far focused on women's preoccupation with weight.46 We are at present expected to live up to a cultural ideal of such unnatural thinness that it can be maintained only by means of constant self-control. That goal is so extreme as to be unhealthy. It denies our femaleness and says that to be beautiful we must look like young lads with breasts. Smoking is one way of coping: it helps you stay thin and is an outlet for stress, but it may also kill you.47 Eating


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disorders are another common coping mechanism, including the dangerous condition anorexia nervosa.48 Much less attention has been devoted to women's other major coping mechanism, exercise.49 One legacy of the nineteenth century is the view that women, at least white, middle-class women, are weak and delicate.50 Mariana Valverde points out how children's socialization reflects that legacy and prepares them for their later roles: "Boys have to suffer the tyranny of the macho model, and this is especially hard for those who are happier doing 'sissy' things. But at least their training is meant to give them power. Girls' training is by contrast designed to render them powerless."51 She looks back at her own childhood for a concrete illustration of such socialization: When I was a child, I had a rather indistinct notion of what I was supposed to be as a grown-up woman (perhaps because we didn't have a TV set). But I definitely knew what I wasn't supposed to be. I was not supposed to play soccer, even though it was my favorite game. ... I was not supposed to be strong.52

Although her mother did not subscribe to these views, the outside world made it clear that she could become a sports star only by becoming a man, which she proceeded to do in her fantasies. As there were no school psychologists in Franco's Spain, she was not saddled with a diagnosis of "gender confusion." She comments: "Anybody of sound common sense could have seen I wasn't secretly longing for a male body. I was not rejecting the ovaries and uterus I did not know. I was simply longing to be strong, tough, knowledgeable, and in charge of things."53 She asserts: "Being strong allows you to do things yourself. Being strong means that you feel good, and as a result look good."54 This view of strength as both intrinsically and extrinsically desirable is, as she says, "completely at odds with the theory of Proper Girlhood."55 What she describes as "Proper Girlhood" requires, on the contrary, that we look good to others no matter how that makes us feel.56 Women tend to slip out of touch with our bodies as we attempt to meet this norm. When we get out of touch in this way, we lose what natural ability we may have to know and do what is good for us. This in turn has serious consequences, one of which is that we no longer know how to define our own true well-being.57 Because of this problem, even efforts to improve our own well-being, through exercise or other means, are sometimes challenged as misguided. Indeed, some feminists, in their justified rebellion against the pressures brought to bear on us by a sexist society, interpret any striv-

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ing to improve the body as capitulation to sexist pressures. Only acceptance of our body as it is qualifies as enlightened, and any serious attempt to shape it is suspect.58 Kathryn Morgan, for example, rightly suggests that we need "selfdetermined and woman-centered ideals of health or integrity."59 But her rejection of the outside standards now coercing women into harmful beauty practices ultimately falls back on an equally unattractive notion of "the natural." She starts by asking for a feminist analysis that explains women's willingness to view their own bodies as mere raw material, and to "choose to participate in anatomizing and fetishizing their bodies as they buy 'contoured bodies,' 'restored youth; and 'permanent beauty.' "60 She is especially troubled by the expansion of cosmetic surgery, despite its potential for harm: What I see as particularly alarming in this project is that what comes to have primary significance is not the real given existing woman but her body viewed as a 'primitive entity' that is seen only as potential, as a kind of raw material to be exploited in terms of appearance, eroticism, nurturance, and fertility as defined by the colonizing culture.61

Her main objection to such surgery is not the physical harm, but rather the larger issues it raises about the perception of women as instruments. Morgan is quite right to question cosmetic surgery as a symptom of the disvaluing of women, and properly upset by the fact that these dangerous changes are usually sought in the service not of the woman's interests but the preferences of others.62 Her position is couched, however, in terms that suggest an objection to altering the body even according to our own desires. She objects to "the appearance of youth on an aging body" as "irreversibly alienating metamorphoses," and to the use of technology to achieve such ends.63 But what if following Belloc and Breslow's healthy habits left your average seventy-year-old looking forty-five? Or if regular doses of Vitamin E— most certainly a child of technology—led her to look thirty? Or suppose that we could sculpt our bodies as easily and safely as we now cut our hair? What, if anything, would be intrinsically wrong with those things? My point is that although we cannot rely on contemporary social standards for guidance about how we should look or feel, we are still quite in the dark about how to decide them independently of those standards. Rejecting the status quo, with its conception of women's bodies as mere raw material, should not require us to conceive of them instead as just natural objects to be passively accepted. The "natural objects" view does not make sense, in any case: Carol Bigwood is right


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when she asserts that "the body must be understood as culturally and historically contextualized, on the one hand, and yet as part of our embodied givenness, on the other."64 Our bodies are always partially what we make of them. In deciding what to make of our bodies, then, and defining our own well-being, it makes sense to attend to what feels good and enhances health in the long run. There is fundamental guidance to be found in our own bodies. Regular, appropriate, intense physical effort, for example, is not only satisfying in itself, but is further rewarded by quite powerful sensations of well-being.65 A good workout brings surprisingly pleasurable sensations. For those who exercise regularly, this physical "fix" lasts into the next day. As it wanes, our body aches for movement, an ache that renders the subsequent activity especially enjoyable. Am I unjustifiably generalizing here on the basis of my own experience and observation? There seems to be good reason not to think so. The instrumental value of such activity in terms of overall bodily functioning is well known, as it promotes good sleep, good digestion, and so forth. And if the research on health habits and exercise is valid, those good effects contribute not only to subjective well-being, but also to the absence of disease and disability.66 It is reasonable to believe that a totally sedentary way of life is harmful. But there is no doubt also some upper limit to beneficial exercise. What may vary considerably is the amount and intensity of exercise that is appropriate for different people. For example, what feels right to me is insufficient for my husband, but too much for my mother. My suspicion is that judging what is right for us as individuals requires careful attention to enjoyable and painful bodily sensations. That in turn helps us determine the physical limitations of our bodies, limitations about which we otherwise have little solid information. Is such attention to bodily sensations sufficient for knowing what is good for us?67 Probably not. On the one hand, what is intrinsically pleasurable now may cause us more pain in the long run, and vice versa.68 For example, soaking your aching legs in a hot tub might feel wonderful, but ice water will do a better job of taking the ache away. And sometimes the best way to get rid of a given pain is to exercise through it, even if your impulse is to stop. So it is also important to take into account the rigorously observed consequences of various practices. Scientific research is essential, even if eliminating its sexist elements will not be easy. Combining subjective experience and scientific knowledge will be challenging. We will need to develop an approach akin to the method of reflective equilibrium69 for reconciling theory and intuition in ethics.

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So far, scientific knowledge (both alleged and real) has dominated discussions about what is healthy, often discounting internally generated knowledge of the kind just considered. But in defining well-being, internal states have an undeniable role. Furthermore, now that the objectivity of science as currently practiced is increasingly in question,70 it is necessary to develop reliable correctives. The intuitions and perceptions at issue here seem to me to be one plausible source of such correction. Moreover, attending to women's own perceptions of their well-being should, over time, uproot the sexism that has plagued others' definitions of that well-being.

Conclusion Because women have been kept so out of touch with our bodies, we lack what Morgan calls "self-determined and woman-centered ideals."71 The cultural messages most of us grow up with leave us with a distorted conception of well-being and lead us to pursue it in harmful ways. The power of those messages is apparent to all of us who have made a serious effort to change our perceptions.72 As we search for alternatives, we need to start paying more attention to our own experience. The human body is quite adept—even if not infallible—at letting us know what is good for it. That cannot be the whole story, however; immediate pleasure or pain are not always reliable sources of knowledge. There is an important place here for more theoretical knowledge. Clearly, we need to temper direct bodily impressions with the kind of scientific information that tells us to face that root canal or that warns us away from crack or unsafe sex. Equally necessary is the analysis of social values that invisibly and sometimes harmfully alter our internal experience. Women, for example, need to scrutinize and resist the cultural conditioning to which we are subjected. Moreover, we will have to fight the sexism that fuels that conditioning and supports the social arrangements that now block health conceived of as a state of positive well-being. The synthesis of these three kinds of knowledge—personal, scientific, and social—will be necessary for developing an adequate concept of health and for using it both in personal decision making and as a guide for social policy. The importance of health demands that these projects be high on our agenda. This discussion has concentrated on women, since it is women who have been subjected to the most extreme and relentless external bodily standards. Should these conclusions be applied to men as well? I am inclined to believe that they should, for even if alienating pressures are differentially applied across the spectrum of privilege, those at the top are not entirely free of them either. The masculine gender role, with


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its emphasis on physical prowess, often requires of men stoic indifference to the state of their bodies.73 Where does all this leave us with respect to the definition of health? I have argued in favor of a definition that includes physical and mental, but not social, infirmities. There is also good reason to reject the view that health is nothing but the absence of such infirmity, in favor of the claim that it requires positive well-being. Discovering what positive well-being might mean for women in a world without sexism is a project to which we all must now turn.

Notes Thanks to Ann Stanforth for helpful comments and work on the references for this paper. 1. Lest the implied assertion here be rejected out of hand, I quote the following: "There is a substantial and enlarging body of medical information and opinion to the effect that these deformities [small breasts] are really a disease [that, left uncorrected, results in] a total lack of well-being." This comment comes from a memorandum from the American Society of Plastic and Reconstructive Surgeons to the Food and Drug Administration, suggesting reasons for wariness about expansive definitions of health. Cited in Nicholas Regush, "Toxic Breasts," Mother Jones, January/February 1992, p. 26. 2. See, for example, divergent views in Arthur L. Caplan, H. Tristram Engelhardt, Jr., and James McCartney, eds., Concepts of Health and Disease: Interdisciplinary Perspectives (Reading, MA: Addison-Wesley, 1981). 3. The value of health needs much further discussion. I assume and believe that it is, or ought to be, among our highest values. While there is much rhetoric to that effect, it is increasingly obvious that health is not really very highly valued in the United States. It has been obvious for a long time that the health of the poor, in particular, is a low priority, for despite some effort to provide care, they sicken and die more often than those who are better off. See, for example, John Kosa, Aaron Antonovsky, and Irving Zola, eds., Poverty and Health (Cambridge, MA: Harvard University Press, 1969). Tolerance (in fact enthusiasm) for war, environmental pollution, occupational hazards, a dangerous transportation system, and a health care establishment that is only marginally available to a substantial part of the population affects virtually everybody, even if the poor often bear more than their share of the bad consequences. 4. This definition was adopted by the International Health Conference, June 19 to July 22, 1946. It comes from the "Constitution of the World Health Organization," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 83-84. 5. See, for example, articles by Kass, Fuchs, Redlich, Veatch, and Whitbeck in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease. 6. See, for example, Eva F. Kittay and Diana T. Meyers, eds., Women and Moral Theory (Totowa, NJ: Rowman and Littlefield, 1987); Mary Jeanne Larrabee, ed., An Ethic of Care: Feminist and Interdisciplinary Perspectives (New York, NY: Routledge, 1993); and Eve Browning Cole and Susan Coultrap-McQuin, Explorations in feminist Ethics (Bloomington, IN: Indiana University Press, 1992).

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7. I will be concentrating on women's situation here, although the norms for the mental and social health of other disadvantaged groups could well bear further investigation. Stereotyped views are likely to infect all of these norms. 8. For poorer women, the models also include paid laborer, of course. 9. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 179ff. 10. Daniel Callahan, "The WHO Definition of Health," Hastings Center Studies I (3) (1973): 77-88; Christopher Boorse, "On the Distinction Between Disease and Illness," Philosophy and Public Affairs 5 (1975): 49-68. 11. Sherwin, No Longer Patient, 193. 12. Ibid. 13. See H. Tristram Engelhardt, Jr., The Foundations of Bioethics (New York, NY: Oxford University Press, 1986), 175. He believes that there are four "languages" of medicine: descriptive, evaluative, explanatory, and social labeling. All are entwined with value judgments. Even the apparently straightforward description of symptoms is, for example, "infected by expectations." 14. Moral attitudes have also shaped supposed "cures," for men as well as women. Consider the following treatments for male masturbation: vasectomy; castration; acupuncture of the prostate, bladder, rectum, or spermatic cord; and insertion of electrodes into the bladder and rectum. See H. Tristram Engelhardt, Jr., "The Disease of Masturbation: Values and the Concept of Disease," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 267-80. 15. Ibid., 279. 16. Ibid., 271-72. 17. For an excellent account of this issue, see Carroll Smith-Rosenberg and Charles Rosenberg, "The Female Animal: Medical and Biological Views of Woman and Her Role in Nineteenth-Century America," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 281-304. For example, consider the view expressed in 1900 by the president of the American Gynecological Society that "many a young life is battered and forever crippled in the breakers of puberty; if it crosses these unharmed and is not dashed to pieces on the rock of childbirth, it may still ground on the ever-recurring shallows of menstruation, and lastly, upon the final bar of the menopause. . . . " Ibid., 285. Puberty was apparently such a strain on the system that "girls of the better classes should spend the year before and two years after puberty at rest" Ibid., 288 n.17. 18. Consider the questions of sexual orientation and sexual identification. Homosexuality, when it has been considered a disease, has generally been considered more serious in men than women, for example. On homosexuality as a disease, see Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (New York, NY: Basic Books, 1981). 19. I am disagreeing here with the work of Thomas Szasz, for example The Myth of Mental Illness (New York, NY: Harper & Row, 1961). For some criticism of his views, see Baruch Brody, "Szasz on Mental Illness," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 475-81. 20. Again, for further details see Smith-Rosenberg and Rosenberg, "The Female Animal." 21. Samuel A. Cartwright, "Report on the Diseases and Physical Peculiarities of the Negro Race," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 305-36. It starts with an astounding enumeration of "facts" about blacks that is reminiscent of Aristotle's comments on women.


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22. Sherwin sees Engelhardt as recommending that "medical reality be democratized and communal negotiations held to determine the ultimate construals of reality (as medical, legal, moral, or other)." Sherwin is wary of this solution, for one source of oppression for groups such as women has been supposedly "communal" decision making in which our voices have not been heard. Sherwin, No Longer Patient, 191-95. 23. Leon Kass, "Regarding the End of Medicine and the Pursuit of Health," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 3-30. 24. Caroline Whitbeck, "A Theory of Health," in Caplan, Engelhardt, and McCartney, eds., Concepts of Health and Disease, 611-26. 25. Ibid., 618. 26. Ibid., 619. 27. Needless to say, there are other relevant factors such as safe workplaces and transportation systems, freedom from violence, and economic priorities that include decent living conditions for all. 28. See Kosa, Antonovsky, and Zola, eds., Poverty and Health. Compare notes 3 and 34, infra. 29. Evidence for this claim abounds. Consider, for instance, the failure to include women in medical research. See, for example, chapters 8 and 12 in this volume. 30. Some, although surely not all of what I have to say here about women will be relevant to the situation of members of other oppressed groups. I feel less able to make generalizations about their situation, since I occupy a somewhat privileged position. What seems clear from observation and statistics is that the more dimensions of oppression that apply to you (poor, minority, gay or lesbian, disabled), the more difficult your objective life conditions tend to be. The difficulty of speaking for others is compounded when what is at issue are more subjective barriers to well-being. Thus, for example, perhaps it is only heterosexual, white, middle-class women who must struggle against the view that strength is unfeminine, as lesbian, black, or poor women have been expected to be strong. So although I hope that my analysis here will have some utility for all women, it will stand in need of correction by women whose experience and subculture is different from mine. 31. I believe that this distinction between objective conditions and subjective attitudes needs to be made, even if it is not as clear as one would like and, unless carefully used, runs the risk of inappropriate victim blaming. 32. See, for example, chapters 8 and 12 in this volume. 33. A horrifying article in The Nation reminds us that 1990 is not very different from 1950, despite the criticism directed at the medical establishment in these years. Adriane Fugh-Berman recounts her first day of anatomy class at Georgetown University Medical School: The instructor "remarked that our elderly cadaver 'must have been a Playboy bunny' before instructing us to cut off her large breasts and toss them into the thirty-gallon trash can marked 'cadaver waste.' Barely hours into our training, we were already being taught that there was nothing to be learned from examining breasts." Adriane FughBerman, "Tales Out of School," The Nation, January 20, 1992, pp. 1, 54-56. Such accounts not only remind us how little progress has been made, but bode poorly for the future as well. 34. Consider, for instance, the implications of the following statistics. In 1987, the death rate for white women was 386.9 per 100,000, whereas for black

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women it was 579.9. Although the rates start out fairly equal at ages 15-24, by 35-44, black women are dying at three times the rate of white women. Likewise, the rates of disability are significantly worse for black than for white women. Sara E. Rix, ed., The American Woman 1990-91: A Status Report, for the Women's Research and Education Institute (New York, NY: W. W. Norton, 1990), 366-67. 35. Nedra Belloc and Lester Breslow, "The Relationship of Physical Health Status and Health Practices," Preventive Medicine 1 (1972): 409-21. 36. Belloc and Breslow assert: men at age 45 who had zero to three of the habits experienced an average life expectancy of 22 years, i.e., a total life of 67 years; persons following four to five of the habits at the same age had a total life expectancy of 73 years; and those following six to seven of the habits, a total life expectancy of 78 years.

Ibid., 257. So men could gain up to eleven years of life, depending on how vigilantly they followed these health practices; women could gain up to seven years. The authors point out that this compares favorably with the increase in life expectancy of four years at age forty-five among American males from 1900 to 1970. Ibid. 37. Despite our inferior position with respect to leisure time in comparison to most Western societies, U.S. citizens are still better off than the unfortunate inhabitants of Third World countries whose worst-off workers have twelvehour workdays, no weekend, and little, if any, vacation time. Documentation for the conditions is hard to find, perhaps because governments are not eager to publicize them. I heard about them on a recent trip to Thailand. See also Annette Fuentes and Barbara Ehrenreich, Women in the Global Factory (Boston, MA: South End Press, 1983), 22-23. 38. For more on this topic, see my "Health Rights," unpublished manuscript (1980). 39. An interesting commentary on our progress and its limits is provided by the annual poll of first-year college students. In 1990, some 30 percent of the males, but only 20 percent of the females still believed that married women belong in the home. See "This Year's College Freshmen: Attitudes and Characteristics," Chronicle of Higher Education, January 30, 1991, pp. A30-31. 40. Sandra Lee Bartky, "Foucault, Femininity, and the Modernization of Patriarchal Power," in Femininity and Domination: Studies in the Phenomenology of Oppression (New York, NY: Routledge, 1990), 63-82. 41. Ibid., 80. 42. Ibid., 75. 43. Ibid. 44. See, again, Bartky. She distinguishes three targets of pressure: "those that aim to produce a body of a certain size and general configuration; those that bring forth from this body a specific repertoire of gestures, postures, and movements; and those directed toward the display of this body as an ornamented surface." Ibid., 65. There is by now also a considerable literature on body size and beauty. See, for example, Germaine Greer, The Female Eunuch (New York, NY: McGraw-Hill, 1971), and Naomi Wolf, The Beauty Myth: How Images of Beauty are Used Against Women (New York, NY: Morrow, 1991). 45. For an recent and frightening account of breast implants and their perils, see Regush, "Toxic Breasts." For a more comprehensive critique of cosmetic surgery, see Kathryn Pauly Morgan, "Women and the Knife: Cosmetic Surgery and the Colonization of Women's Bodies," Hypatia 6 (Fall 1991): 25-53.


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46. See, for example, Joan Jacobs Brumberg, Fasting Girls: A History of Anorexia Nervosa (Cambridge, MA: Harvard University Press, 1988), and Kim Chernin, The Obsession: Reflections on the Tyranny of Slenderness (New York, NY: Harper & Row, 1981). 47. It has been noted that young women are taking up the habit in record numbers. See Jane Ritchie, "Women and Smoking: A Lethal Deception," Women's Studies International Forum 13 (1990): 201-08. 48. For a compelling argument linking anorexia with the female gender role, see Mary Briody Mahowald, "To Be or Not to Be a Woman: Anorexia Nervosa, Normative Gender Roles, and Feminism," Journal of Medicine and Philosophy 17 (1992): 233-51. Mahowald cites studies showing that most teenage girls, unlike boys, feel "fat." One study found that 10 percent of the female subjects had "mild" cases of anorexia. Ibid., 238. It should be noted that 95 percent of anorexics are women, and furthermore, that the disease kills between 5 and 18 percent of its sufferers. Ibid., 236. 49. See ibid., 234, and Bartky, "Foucault, Femininity, and the Modernization of Patriarchal Power," 66-67, 73. 50. See Smith-Rosenberg and Rosenberg, "The Female Animal." It would be interesting to know how widespread such attitudes still are. Certainly remnants of them were alive and well in the French family I lived with for awhile in the early 1960s—girls were expected to be fragile and flighty about the time of their first period, and each month I was admonished to take it easy, not wash my hair, and so forth. 51. Mariana Valverde, Sex, Power and Pleasure (Toronto, Canada: Women's Press, 1985), 29. 52. Ibid., 29. 53. Ibid., 30. 54. Ibid. 55. Ibid. 56. This requirement is becoming, if anything, more stringent. See, for example, Morgan, "Women and the Knife." There continues to be a striking contrast between the average student's relaxed appearance at the rural women's college where I teach and the far more carefully put together look of women at nearby coed schools. Unfortunately, that relaxed standard does not hold for women faculty, despite our unusual near parity to men in numbers. 57. For example, we have great difficulty evaluating how much and what kind of physical activity is right for us. Knowing when we need exercise or are doing too much is especially important in a society where we are introduced to systematic exercise in mandatory and often hated physical education classes. The popularity of spectator sports compounds the problem, together with a generally sedentary U.S. lifestyle that tends to protect all but the poor from significant physical demands. Until quite recently, serious exercisers were often the butt of jokes and they are, even now, apt to be thought selfish or guilty of over-attention to the flesh. The latter is especially bizarre, coming as it often does from men who think of women as Barbie dolls or women who themselves seem totally preoccupied with their appearance. I suspect therefore that what incites such ridicule is the goal of the activity rather than the activity itself. Serious exercisers aim at doing something for themselves—increasing their strength, endurance, flexibility, mental well-being, and general health—not at conforming to some externally dictated ideal of beauty. 58. For an interesting discussion of this issue, see Janet Radcliffe Richards, The Skeptical Feminist (London, England: Routledge and Kegan Paul, 1980), ch.

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7. Ironically, this negative attitude toward strength may in part hark back to girls' early socialization for weakness and passivity. Although we may start out as active as little boys, we are soon expected to turn to more languid pursuits that not only help keep us "fresh and beautiful," but that are also considered more intrinsically feminine. Some escape these pressures by taking up one of the few socially acceptable physically demanding activities such as ballet or ice skating, or, more recently, gymnastics and running. Even then they are not encouraged to see these activities as a source of physical pleasure or health, however. To the contrary, the emphasis is on competition, even at the expense of health, let alone pleasure. 59. Morgan, "Women and the Knife," 32. 60. Ibid., 28. 61. Ibid., 37. 62. Consider the question of breast size, for instance. If our culture did not value (demand, in fact) big breasts, how many women would agonize about their breasts or prefer big ones if they could choose any size? My suspicion is that most women would opt for small or medium-sized ones, because that is what is most comfortable for a wide range of activities. 63. Morgan, "Women and the Knife," 39. 64. Carol Bigwood, "Renaturalizing the Body (With a Little Help from Merleau-Ponty)," Hypatia 6 (Fall 1991): 54-73. This comment is on p. 57. 65. I was reminded of this recently when I started, for the first time, to pay serious attention to exercising my arms. After years of dancing and running, I took for granted the good feelings in my legs and never noticed their absence in my upper body. Yet now they are a significant source of pleasure. 66. Anybody who wants to hear more about the mental equilibrium, increased strength, and self-confidence such a regimen can bring should consult any good running book. In any case, there is now an expanding literature on the health benefits of exercise and its relationship to death rates. See, for example, Steven N. Blair et al., "Physical Fitness and All-Cause Mortality: A Prospective Study of Health Men and Women," Journal of the American Medical Association 262 (1989): 2395-401. 67. Thanks to Jim Nelson and Susan Wolf for questioning my initial reliance on this criterion. 68. Thus Bentham's attention not only to the intensity and duration of pleasure and pain, but also to their fecundity and purity. See Jeremy Bentham, "An Introduction to the Principles of Morals and Legislation," in The Utilitarians (Garden City, NY: Dolphin Books, 1961), 38. 69. See John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971), 20ff. Engaging in reflective equilibrium is a way to attempt to reconcile our gut feelings about particular cases with more general ethical principles. 70. See, for example, Sandra Harding, The Science Question in Feminism (Ithaca, NY: Cornell University Press, 1986); Ruth Bleier, Science and Gender: A Critique of Biology and its Theories on Women (New York, NY: Pergamon Press, 1984); and Helen Longino, Science as Social Knowledge (Princeton, NJ: Princeton University Press, 1990). 71. Morgan, "Women and the Knife," 32. 72. My own efforts along these lines have led to a capacity—only sometimes, and mostly with respect to other women, not myself—to see women as beautiful even when they do not live up to cultural stereotypes. The experience is a bit like having a duck/rabbit perception experience, very unsettling.


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73. Apparently we do not really know why men live shorter lives on average than women, but one might well wonder what role this stoicism plays in the matter. We do know that luring men into dangerous practices such as steroid use and cosmetic surgery to obtain a more muscular-looking body will not improve the situation.

7 Communicative Ethics in Medicine: The Physician-Patient Relationship Janet Farrell Smith

What distinctive concepts from a communicative or discourse ethics could illuminate ethical issues in health and medicine? Such a viewpoint has much to contribute by taking speech or discourse as a kind of action and applying a philosophy of communicative action to the physician-patient relationship. A communicative ethics approach goes beyond the often-heard call for better communication, and more of it, between patients and physicians. It argues for a transformed view of medical interaction and the source of governing norms, drawing on insights from philosopher Jurgen Habermas, leader of the school of critical theory, and further shaped in key ways by feminist philosophers. In the model proposed here, communication is not a merely procedural or ancillary element in ethics or in social structures. Instead, in a "linguistic turn," human speech is considered as a form of action and ethical values are grounded by discourse. 'Communicative ethics' or 'discourse ethics' accordingly designates a model by which we—the speakers in an open communicative forum—critically analyze existing norms, explore new ones, and come to mutual understanding or consensus. Norms, policies, and action-guiding principles are, on this view, generated in a process of reasonable deliberation in a public forum open to equal and public participation. The validity of a given

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factual or normative stance can be openly questioned in a collective process of challenge, discussion, and critical examination.

The Strategy of My Argument I begin by explaining some key premises of communicative ethics. Then I explore difficulties in viewing the notion of communication as transfer of information, a notion prevalent in scientific discourse, arguing that this model is too limited even to account for the normative importance of information in physician-patient discourse. In contrast, we find a more adequate model in a notion of communicative action, drawing on Habermas's theory. This features a consensual notion of action that makes it possible to emphasize patient rights within a medical and social setting. The physician-patient relationship provides a crucial locus for such an analysis because by U.S. law treatment decisions made within it must be consensual, rather than merely technical action oriented to a strategic end of curing a disease. In Habermas's communicative ethics, this contrast would be articulated by saying that physician-patient interaction must be a matter of "communicative action," or consensual action geared toward understanding, rather than "strategic action," which is designed to achieve some instrumental goal without critical engagement with another self-conscious being on whose agreement the action depends. Communicative action can also provide an adequate model for evaluating power inequities in medicine, especially the gender and race inequities illustrated by studies in medical sociology and sociolinguistics. Selected cases illustrate the usefulness of a notion of communicative action. I conclude by stressing the importance of the "concrete other" and suggest guiding ideals for discourse and medical practice.

The Main Point of Communicative or Discourse Ethics Several key contrasts highlight what is distinctive in discourse ethics especially for a philosophy of medicine. Rather than being given in advance by some abstract rational deduction, norms are generated within human discourse and through a process of creating shared meanings and agreed-upon understandings. "Communicative rationality" is Habermas's term for the explicit attempt to reach agreement or understanding based solely on reasonable agreement rather than persuasion or pressure. Although his method does not provide a decision procedure for resolving a given question, it does provide a framework for grounding an ethical approach. 1

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Rather than a lone thinker isolated in a Cartesian study or some ideal spectator reasoning in abstraction above human speech processes— what Habermas calls a "monological model"—communicative ethics involves a dialogical model, an irreducibly intersubjective process of collective discussion. This process is modeled on egalitarian democratic participation rather than the specification of norms by elite groups. Rather than simply accept norms evolved from custom or tradition, such as Hippocratic values, or accept ethics codes drafted by elites such as bioethicists or physicians, communicative ethics calls for a collective and public critical examination of each norm. Discussion and agreement must validate a norm so that it satisfies Habermas's condition that "all affected can accept the consequences and the side effects its general observance can be anticipated to have." 2 General norms regarding medical practice would, in discourse ethics, require public discussion of norms for society-wide procedures, such as medical experimentation on human subjects, patient consent, and advance directives. Under the "interactive universalism" affirmed by Seyla Benhabib (following from Habermas in some respects and departing from his views in others), these would embody a second-level norm of universal moral respect and equal worth. While we can use this critical discourse method on a collective level to scrutinize general or even universal norms, we may also use it on a smaller scale to illuminate the ethical norms of the category of physician-patient interactions. So certain norms employed in individual physician-patient interactions, such as informed consent and the patient having the final say in case of disagreement, would also apply generally across all patient interactions.3 Norms also come into play on a still smaller scale, we might say "writ small," in individual patient-physician discourses. For example, a given patient and physician could mutually agree on a norm of full and direct disclosure to the patient of all test results. Or they might resolve to discuss differences of opinion on the desirability of a given treatment, so that lacking agreement, they still come to some understanding. Discourse ethics makes a crucial distinction between consensus or agreement, on the one hand, and mutual understanding, on the other. Even if the first is not attained in a given instance, the second can still be pursued. Rather than discussion aimed at persuasion, pressure, or manipulation of the hearer to achieve the speaker's ends, the goal is mutual comprehension and reasonable assessment. The fundamental ethical point lies in two subjects reaching reciprocal understanding while holding full respect for each other's reasoning process, reasons, feelings, and authentic noncoerced participation.


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A Model of Communication as Transfer of Information A key feature of medical discourse emerges in the exchange of information between physician and patient. It is revealing to examine how this flow back and forth between physician and patient is shaped, what is revealed or requested, when, by whom, at whose request or command, and whether there is reciprocal revelation of reasons, doubts, and anxieties. When we look at the medical context, instead of a free exchange of speech acts we find a highly structured discourse situation in which the physician is usually very much in control. Some patients perceive this sharply. Others more vaguely sense time constraints and a sequence structured by physician questions and terminated by signals of closure, such as writing prescriptions. How then are we to analyze the nature of this communication? Which models of communication reveal authority and norms within communicative settings, and which mask them? One model of communication takes it as a mechanism to transfer information from one source to another.4 On what I call an information-transfer model, a source of information transfers it to a receiver. As the model applies to medicine, one source, usually the physician, obtains relevant information on patient symptoms, status, and history, by medical interviews and tests. Subsequently, after objective analysis, the physician transfers diagnostic and treatment information back to the patient-receiver or his or her family. On this model, communication consists of a delivery mechanism. It feeds appropriate information to the appropriate receivers to ensure rational diagnosis and decision-making procedures. Patient comments constitute "input" to the eventual diagnosis; physician verbal utterances are a matter of "explaining" to the patient in order to enhance patient comprehension and ensure compliance. Accurate and effective transfer of information helps the physician make a diagnosis and the patient properly follow medical orders. Further, information delivered by the physician is designed to enhance rational deliberation by patients before they give informed consent.5 Before evaluating this model, it may be helpful to see how prominent it is and who might hold it. The prevalence of an informationtransfer model of communication in medicine has been noted by medical sociologists, such as Todd, Fisher, and others. Researchers have found medical discourse "dominated by technical information, with little emotion shown."6 For example, English researchers Byrne and Long found in 2,500 doctor-patient interviews that "doctor centered, information gathering" conversations were the most prevalent modes

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of talk. Biomedical information was gathered with little listening or reflecting on the part of the doctors. Byrne and Long found "hardly any allowance for patient-centered concerns to emerge once the initial complaint was stated."7 A model of communication as transfer of information can also be found in technical scientific domains, where the term "communications technology" means transfer of information among sources. The technical-scientific model of knowledge has become especially central in the biomedical approach to medical treatment. An information model has been articulated and extolled by one of the progenitors of the electronic technological revolution, Norbert Weiner, who says in The Human Use of Human Beings, The needs and the complexity of modern life make greater demands on this process of information than ever before, and our press, . . . our scientific laboratories, . . . are obliged to meet the needs of this process or fail in their purpose. To live effectively is to live with adequate information. Thus, communication and control belong to the essence of man's inner life, even as they belong to his life in society.8

On an information-transfer model in medical practice, communication has no substantive or constitutive status for medical treatment but is viewed basically as a means to another end. Because information, deliberation, and subsequent actions are each seen as separate, discrete components, and because ethical significance is primarily lodged with deliberation and action, communication on this model drops out of the ethical picture. The reason for this is that discourse is not seen as a central dimension of human action.9 Moreover, an information-transfer model focuses on the factual level of communication to the exclusion of other—normative—factors which are crucial to the medical context and to patients making choices. Granted, a focus on facts is important, and even essential in medical practice. It is also in the interest of patient rights and autonomy and what Habermas calls "communicative rationality," in which participants in deliberation freely adopt reasons without being unduly persuaded by external factors such as mere authority, pressure, or coercion. Information is also crucial in the sense that, without it, patients are not informed or able to base choices on reasonable evidence. But Weiner reveals a crucial failing of the information-transfer model, which is the conflation of factual and prescriptive statements: "When I control the actions of another person, I communicate a message to him, and although this message is in the imperative mood, the technique of communication does not differ from that of a message of fact." 10 In contrast, Habermas takes pains to distinguish between fac-


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tual and normative statements, invoking speech act theory from J. L. Austin and John Searle.11 An information-transfer model of communication is also not even adequate to account for the importance of facts and information in medical settings. The reason for this deficiency lies in the lack of attention to normative factors in the communicative setting. Speech acts include not merely assertorial speech acts, which put forth a certain content, but also various types of normative speech acts with an "ought" implicitly or explicitly included. These comprise "regulative" speech acts, in Habermas's terminology. In medicine we often observe suggestions: "Heart surgery might be the best option," or "One option is a spinal tap," or "I think you might get a surgical biopsy." We also observe orders or commands: "Take three tablets four times per day," or "You must finish this course of medication." When discourse is viewed merely as the transfer or exchange of information, these distinctions remain invisible within medical practice. 12 The mode of delivering information can have a dramatic impact on a patient's healing or decline. Instead of an exploratory process of investigating alternatives, a physician may present a recommendation so decisively that the patient takes it not as one option or suggestion, but as a prescription admitting of no question. Patients may perceive "what the doctor says" as factual and final. Because of the authority physicians have in our society, a patient may hear as an imperative or command what the physician-speaker intends only as an factual assertion or one among many options. Such conflations, especially when they remain implicit and unexplored, preclude patients taking charge of their health. An information-transfer model renders this problem invisible. Limiting our view of communication to information delivery also downplays the dimension of power and authority in the linguistic interaction between physician and patient. It makes no room for what one medical sociolinguist, Sue Fisher, has called "communicational patterns" in which "language is used strategically over the course of [a medical] interview to accomplish treatment decisions." 13 Physicians and patients talk in certain repeated patterns. These habitual linguistic structures have been documented empirically in sociolinguistic studies of physician-patient speech. Such studies show clearly how power and authority14 operate in the speaking and hearing of physician and patient. Most medical encounters, for example, are primarily "interviews." Such interactions constitute a structure for which medical students need to be carefully trained. As one medical sociologist has observed, a medical interview is only secondarily a "conversation." 15 One person, the physician, controls the entry and exit of topics and controls

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the time devoted to a certain topic.16 By interrogative speech acts, namely professionally established lines of inquiry, the physician also controls the introduction and timing of topics. Through interruptions, the physician allows or cuts off patient lines of questioning. Several studies have shown that the physician-led medical interview is confined mainly to the question-and-answer mode of speech and that patient-initiated questions are often "dispreferred" in medical interviews.17 In these interviews, communication serves not just to exchange information, but also to establish who holds power. A model of physician-patient communication must therefore present an internally complex scaffolding that enables us to identify power and authority and to analyze their impact. Differential access to power and the different practical concerns of patient and physician "differently organize [ ] how they exchange information," in the words of Fisher. She adds that "[although patients could and did ask questions, they rarely questioned the information presented or challenged the treatment recommended."18

Communicative Action as a Model for Medical Discourse and Practice We need a more refined model for analysis, which will illuminate a truly consensual and cooperative type of action. When we adopt a model of communicative action, we focus attention on the action dimension of discourse as well as the normative, rendering them both visible and accessible to critical analysis. Within medical practice there are specific features best captured by a model of communicative action in the following ways: 1. In contrast to an information-transfer model of communication, a model of communicative action allows us to analyze how speech acts guide, coordinate, and interpret action and how speakers' power and authority remain open or closed to hearers' questions or challenge. In such a theoretical framework, where speech is a form of action, a speaker qua actor may be held accountable to normative assessment from the hearer or from the larger social forum. Mutual exploration of the meaning and implications of various speech acts is then possible among the speech actors within a discourse situation. 2. A model of communicative action best represents the ethical ideals of physician-patient interaction and patient self-determination. It includes an emphasis on communicative equality and mutuality. It features values based on agreement, rather than physicians acting paternalistically in patients' best interests without regard to patient input or actual consent.


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3. A model of communicative action is superior to one of information delivery because it makes consensually based action central. Consensual action requires agreement or understanding among the agents, which places ethical factors centrally within the notion of discourse as well as action. Discourse or speech action embodies the consent and expresses the mutual recognition of agreement between agents. Purposes may exist within communicative action and actors may strive to realize them. But in communicative action these must be encompassed in an underlying framework of consensual agreement or understanding. 4. Even if full and precise agreement on each and every point is impossible, there is still a striving for agreement and mutual understanding. When disagreement arises, then 'second-level' norms can be brought in to mitigate and deal with it, as for example, the right of informed consent and the patient right to refuse treatment even in the face of physician disapproval. These norms negotiate disagreement, albeit in a limited way, by giving patients a means to opt out of a given treatment.19 5. Strategies for goal-directed action geared to success are not precluded in communicative action but are grounded on collective agreement. Agreement or understanding constitutes the overriding ideal in communicative action. In other words, the primary end is the collectivity's understanding of what it is doing and its agreement on its internal purpose, goals, and strategies as well as which values are followed. Under this overarching consensus, all could agree, for example, on certain strategies to cure a given illness. So consensual action could plausibly comprise action strategically oriented to success. Strategic action geared to success (such as a cure) may be agreed to through communicative action, as long as there is a genuine consensus. Interpreted in this manner, medical practice within a group including a patient and her medical team may begin with consensus sessions on ends and values of treatment, then move to specific calculations on strategies to achieve specific goals. Thus medical practices may exhibit features of both consensual communicative action and success-oriented strategic action, where the latter is subsumed under the former. Here I make an interpretation emphasizing models rather than typologies, thus departing from the theoretic position of Habermas, who divides communicative action and strategic action into two exclusive types.20 A theory of communicative action more accurately portrays the social features of medicine. The physician's medical practice is "collectivityoriented" in Talcott Parsons's phrase, meaning that it is organized to respond to the needs of a social collectivity.21 It is not "self-oriented"

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toward goals of the agents, as in a business where agents aim simply at success in gaining profits, growth, or capital enhancement. 6. Medical practice is not only oriented to the social collectivity, it is also oriented to concerted, collective action, especially in a contemporary technical world affected by the proliferation of information. Group action must function in a certain concerted manner—the medical team requires internal agreement on and mutual recognition of its internal goals, information, and patterns of practice. If the team led by physician, including nurses, specialists, technicians, and administrators, fails to coordinate its information and agree upon shared meanings and interpretations, then medical practice would disintegrate into uncoordinated confusion. Thus medical action presents as ideally a kind of communicative action. As concerted, collective, consensual action, medical practice has to aim for more than merely success at a specific goal. Medical treatment might, for example, succeed in curing the disease, but ruin the patient's quality of life, kill the patient, or kill the patient's will to live. So in medical action there has to be, or more precisely, there ought to be consensual agreement on a specific course of action within treatment. 7. Communication in the truly ethical sense must realize a different, and I maintain, a consensual framework to avoid a collapse of the notion of communication into persuasion. A skills-based notion of "communication" could become merely another way of achieving an end posited by medicine but not taken up and self-affirmed by the patient as his or her own. For example, recall sociolinguist Sue Fisher's point that "language is used strategically over the course of [a medical] interview to accomplish treatment decisions." 22 This indeed presents one use of the term 'communication' but it is not what must be grasped by the substantive ethical content of the term under a model of communicative action. It may also be what leads Jay Katz to describe "the silent world of doctor and patient."23 The authenticity of patient voices, and often physicians' voices, has been subsumed under a merely strategic goal rather than an ethical ideal of mutual understanding. Because understanding and agreement are fundamental to a model of communicative action, such a model can make power and authority more visible. A model of communicative action affirms accountability for physician speech acts. It legitimizes discourse that raises questions about what the speaker presupposes. For example, if the patient asks "Is this treatment you recommend the only one available?" she raises as a thematic question the issue of how to evaluate the appropriateness of various treatments.24 Her query also raises the question of who has the authority to decide what is appropriate and on what criteria. In


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contrast, when medical practice is viewed as merely a set of action strategies and communication merely as information delivery, discussions of values seem simply to interfere with the strategies for medical success, diverting time, resources, and energies. 8. Interpreted under a model of communicative action, informed consent discourses would be designed to generate the values and norms peculiar to a given patient's situation. Not only would the patient's consent be freely given, but the values on which the patient decided would be discussed and mutually understood even if not always agreed upon. For example, discussion might center on values such as acceptable quality of life in the patient's view, patient standards for acceptable burdens of treatment, and so on. By the U.S. law on informed consent and patients' rights to refuse treatment, the patient has the final say on treatment in case of disagreement. But both physician and patient must come to some mutual understanding, even about the disagreement. They must acknowledge the meta-norm governing questions of agreement or disagreement, namely that under U.S. law, the patient's ultimate decision prevails. Failure to reach mutual understanding puts the treatment question into disputed territory. It risks turning the relationship between physician and patient, which Todd calls one of "intimate adversaries," into one of legal adversaries. 25 Not only would values such as quality of life be capable of evaluation, but also the norms of the discourse itself. For example, the norm of patient autonomy might be tailored to the patient's explicit need and ability to call for support in certain situations, such as having a family member present, having more time, or finding another person to advocate for her interests and interpret medical terminology. Not only would this be a dialogue in the true sense, with each participant comprehended from the inside; the patient's subjective lived experience and cultural assumptions, her "lifeworld," as it has been called, would be explored as an integral dimension of the whole picture. 26

Power Dynamics In Discourse: Gender, Race, and Class Communicative ethics can illustrate how power and authority become manifest in medical discourse. First, consider gender differences. Speaker assertiveness is generally required for initiating questions or for challenging the validity of a claim within discourse, including within Habermas's notion of a communicative ethics. Speaker assertiveness is also a norm characteristic of the professional physician role within the discourse and practice of medicine. 27

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Yet many now-classic studies of linguistic gender differences have shown that women's subordinate social position correlates with less assertive speech, evidenced by hesitancy (tag questions), interrogative intonation (voice rising to a question at the end of a sentence), lower frequency of turn taking, and shorter speech acts. Assertiveness in speech also correlates with turn taking, a notion used to study how often speakers comment and who takes up the opportunity to speak. Studies generally indicate that the vast majority of interruptions are made by men and some show as many as 95 percent are made by men.28 Male comments dominate discussion, even in discussions of women's issues. Men more often "speak for the team," and are generally more prominent in public speaking situations. Male discussion leaders respond more readily to male discussants. In some researchers' observations, women use talk to establish relationship and contact; men use speech to establish hierarchical status, achievement, and independence.29 Moreover, hearers assess speech differently depending on the speaker's gender. The same level of assertiveness is perceived differently in women than in men. Women who do speak assertively are often taken to be domineering rather than dominant, emotional rather than rational, biased rather than authoritative, and complaining rather than assertive. As social psychologists have put it, "The same competence and assertiveness accepted in a man caused a woman to be rated unattractive, cold, or undesirable as a group member."30 Communication in our current world therefore appears neither as a gender-neutral activity nor a gender-neutral norm. Nor is medical treatment gender-neutral, as evidenced by the differential standards in medical care rendered to female versus male heart patients, for example.31 A female patient challenging claims by a physician may be perceived differently from a male making the same challenge. She may be taken as hostile, uncooperative, and confrontative, whereas a male patient might be viewed as rational and actively involved in his own treatment. 32 Power can also be seen in the interaction between discourse, social status, gender, and race. Medical sociologist Alexandra Todd cites data showing that when physicians talk with patients of color, the amount of information presented decreases. Sociolinguists studying medical discourse also find obstacles to clarity when physicians exchange information with women patients.33 The patient's race, gender, and perceived socioeconomic status all influence how much information is presented. Addressing the question of race in medical discourse, sociologist Roger Shuy says: "Consciously or unconsciously, dialect speakers tend to get worse treatment, wait longer for service, are considered ignorant, and are told what to do rather than asked what they would like to do."34


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Race and gender therefore interact to push women and especially women of color down on a continuum of lesser power. Studies indicate that the degree to which information is revealed is pegged to status and color. "The darker a woman's skin and/or the lower her place on the economic scale, the poorer the care and efforts at explanation she received. Women of color and/or an economically poor background were more apt to be seen as 'difficult' patients when they asked questions."35 Even determining what information will be discussed in the medical interview presupposes normative criteria of selection, which in turn reflects differential power and access to technical knowledge. Medical information in a scientific-technological world is vast and rapidly expanding. It is those in power, namely physicians, who make the selection according to certain criteria. As Fisher points out, analysis of physician-patient communication is possible only when these criteria are made explicit. In a model of information transfer, such criteria would remain at the factual level, thereby leaving the implicit normative control of criteria invisible and unanalyzed. To highlight the factor of discourse power, let us consider the implications of replacing a medical "interview" with a medical "conversation." In an interview, the flow of information is molded and directed by the person in control.36 Conversation, by contrast, features an openness and lack of predetermined structure. Most importantly, a truly open communicative forum is based on a presumption of equality—what I call "communicative equality"—which involves each participant respecting the ability of others to make and receive speech acts whether in dyads or larger linguistic groups. Exploratory discourse, which allows for the discovery or seeking of new information, also allows for statements that go beyond informational exchange. It includes what Habermas calls "expressives," speech acts expressing affective or emotional content, which might function as stimuli for further action (e.g., "I am afraid of this treatment," followed by "What else can be done?"). There are in addition to factual statements, "prescriptives" or 'ought' statements, and conjectures. An open conversation allows each participant to volunteer a topical line or to pursue questions about already established recommendations. "Communicative equality" is not simply synonymous with equal social status, social role-equality, or equality in knowledge or expertise. Rather, it is the equal chance to speak, question, and explore. It requires that respect be accorded to'each communicative participant.37 Its documented absence in some physician-patient interactions indicates the difficulty of making the physician-patient relationship a more caring one and encouraging dialogue in the true sense of the term.38 In sum, failing to analyze or challenge the role played by information within physician-patient communication supports traditional physi-

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cian authority, a hierarchical speech situation, and an asymmetrical power structure. Insofar as physician—patient discourse possesses no framework for distinguishing and questioning the normative and regulative status of information, it remains within the control of the physician and leaves the patient's voice muffled. As Todd has observed, a "close scrutiny of this relationship and medical discourse has revealed how doctor-patient communication maintains the inequality of the relationship." A doctor-patient relationship left to continue without communicative equality may, as Todd phrases it, remain "asymmetrical, with dominating doctors and passive patients participating in a 'ceremony of sickness.' "39 Given these conditions some theorists question the plausibility of an ethical goal of "dialogue." The "silent world of doctor and patient," as Katz has so vividly described it, leaves room for only the most formalistic and therefore ethically empty notion of patient consent.40 The information-transfer model of communication does not help us out of this silent world, since it provides only for a minimal notion of communication as effective transfer of information. Neither does the assumption of a physician-led medical interview, so deeply ingrained in patient consciousness that patients may not even realize how pervasive it is, let alone be capable of challenging its assumptions. A necessary prerequisite to transformation might be a deliberate exploration of other modes of speaking and hearing between patient and physician.41 How such a model will incorporate gender, racial, and class differences remains an open question. Many feminist critical theorists have critiqued and amplified Habermas's basic theory. Nancy Fraser has argued that women have been excluded from public sphere discourse, in part because of their relegation to the private or domestic sphere.42 Accordingly, dilemmas arise on whether women will enter into full equality in terms of male standards or whether new forms will be created. Women's equality in receiving medical treatment raises similar dilemmas. These are compounded by the mixed public and private status of medical care. Medical practice straddles the private sphere with norms demanding patient confidentiality on the one hand, and the public sphere with norms ensuring patient rights and demands for equal treatment, on the other. Medical discourse in physician-patient interaction often takes on a "black box" quality. Since it occurs in a quasi-private office or examining room, it is difficult to observe. Our knowledge of it is often only inferential and based on seeing the participants going in or coming out. Assessing the transformation of this relationship by public norms is even more difficult, since what transpires is primarily hidden from public view. Remedies for institutionalized prejudices must be broader than


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merely requiring symmetrical opportunities for speech. The problems need to be brought to the foreground of collective discussion, where the norms of discourse themselves can be examined for androcentric or male-centered bias, class bias, and racial bias. The standpoint of vulnerability and dependency, long associated with women and the poor but in medical care associated with patients,43 can be assessed for its impact on discourse.44 Indeed, Habermas has insisted that in a communicative ethics, only the force of a better argument will prevail, in contrast to the force of authority or established power. This has a particular appeal in medical contexts where paternalism or mere authority may hold sway over reasoned deliberation or the patient's consent. But there are also many nonrational factors affecting discourse, particularly in medicine, such as the affective, embodied situation of agents, as theorists such as Iris Young have pointed out.45 These have special significance in the context of illness, suffering, and dying. Patients and medical practitioners respond to these with differing degrees of affect and objectivity. In a medical situation the affective may take supremacy over so-called "rational calculation." Therefore, in a communicative forum we must regard the moral construction of self as a "situated self," "not as a moral geometrician but an embodied, finite, suffering and emotive being," in Seyla Benhabib's words.46 Such an inclusion, from one viewpoint, need not disturb the fundamentally rational stance advocated in a communicative ethics; as Habermas has observed, it may be quite rational, if all agree, to include consideration of affect in the discourse setting.47 But it should be noted that if recognition of affect is conditional upon prior rational argumentation, affective factors or moral feelings may be relegated to secondary status by the very procedural norms of discussion. Two conundrums for communicative ethics arise from these observations about power. One is that power dynamics arise within the very social structures that could be used to overcome them. Opening up the discourse forum could, by its implicit procedures, exclude the participation of the very groups that most need to be included. For example, if gender differences in speaker assertiveness consign assertive women to perceived emotionality, then how can women be accepted as full rational participants in a communicative forum? To this first problem, one response is to insist on an egalitarian communicative forum that devotes itself to overcoming not only subordination in social institutions, but also hidden patterns of inclusion or exclusion. A second problem arises. In trying to become aware of discoursebased expressions of differential power involving physicians and patients, the only available tool we have requires patterns of actual linguistic interaction. But how effective can a tool be when it is imbued

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with the very problem it is designed to overcome? Are these discourse structures intertwined so that each involves power and none is neutral enough to lead us out? Are we thereby confined to failure because we try to transcend a power structure by a means that is infected with the very fault we want to overcome? To this danger, one response is that we need not fall into a reductionist bind, concluding that nothing but verbal power struggles may ensue between physicians and their patients. Neither need we conclude that the institutionalized, bureaucratized forms of medical discourse make power inequities and distortions inevitable. Linguistic patterns can be linked up with ethical ideals if we have a practice and theory that integrate such values into a notion of speech action. We can acknowledge a value stance at the heart of our critique of power in language and advocate changes in line with such ideals if we start with an adequate framework. My strategy in this chapter is to take power seriously and attempt to analyze it in medicine primarily through a contrast between a stance of strategic action or technical control over a specific problem (e.g., conquering a disease) and a stance of communicative action incorporating dialogical understanding and humanistic values such as respect for patients' wishes.48

Illustrative Cases To understand the importance of communicative action, consider the following cases.

Case 1. An Elderly Heart Patient A woman in her 60s, diagnosed with a heart condition and prone to mild depression, receives advice from a surgeon who states she "must have heart surgery immediately," then dismisses her. She goes home, deliberately puts her affairs in order, writes her husband and children a letter explaining her extreme aversion to surgery, and takes an overdose of pills resulting in her death. Later, to the great sorrow of her family, it emerges that surgery was not the only treatment for her condition, and there were other medical alternatives. Her self-induced death appears unnecessary. In interpreting Case 1 one might say that the surgeon49 basically regarded the patient as a medical problem to be worked upon. His approach might be said to exemplify a stance of strategic action in which actors work on a project in order to accomplish a given goal, in this case a specific medical goal concerning the diseased heart. When he spoke to the woman patient about her condition the sur-


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geon was "telling her something" from the standpoint of achieving a strategic goal—namely saving the heart—rather than interacting with her as a participant in a shared project.50 What was foremost in his scrutiny was how to treat "the heart," not how to interact with this particular patient. His viewpoint could be characterized a "stance of strategic action," in contrast to a "stance of communicative interaction" in which the point is to interact in an aware manner with another conscious human being.51 This surgeon's use of language was instrumental, in the sense that dealing with the patient and getting her consent were means to getting the surgery done. In this way, his use of language was directed at "the problem" and not designed to engage the person. Such a stance regards the patient as a "generalized other," as fitting into general disease categories. It does not take into account this patient's particular circumstances as a "concrete other." The paradigm of action in the operating room on "the heart" of an anesthetized and unconscious patient may have dominated the surgeon's discourse in his office interaction with the alert patient. In performing surgery, communicative interaction with conscious patients is not only usually unnecessary for the success of the surgical project, but indeed, may be a distraction.52 One might hear echoes of these attitudes in medical language about "the coronary in 324" and "the dialysis in 436," naming patients by their problems. Note the different emphases in the following: operating on "the heart" to save the patient's life (strategic action) versus saving "this woman's life" by her comprehension and consent to an operation on her heart (communicative interaction). Medical treatment oriented only to success might amount to a "cure," whether the patient comprehended or agreed to it or not. As some physicians are oriented entirely to the goal of success of the treatment, and some medical students are surprised to discover they need the consent of the patient to proceed, medical practice on this model amounts to strategic action. The status of patients as subjects is not an integral or necessary ingredient in the fundamental process. Conversely, although communicative action may be directed toward a certain goal—in the case of medical practice, healing—it is simultaneously more than that. It necessarily incorporates the active, consented cooperation of those involved and is therefore characterized as a consensual and a cooperative process between practitioners and patients.53

Case 2. A Confused Cancer Patient A retired woman in Denver who has had a lumpectomy and lymph nodes removed waits anxiously for a full pathology report, then complains that her physician, in whom she otherwise claims

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she has full confidence and trust, has given her only partial information about it. "I need to make plans," she says, "but he's not telling me what is happening." Finally, her daughter in Boston obtains a copy of the report, takes it to an oncologist there, gets a technical interpretation and calls her mother to explain that the cancer has metastasized. Some of the woman's friends then mobilize to find her the latest, most effective treatments, while others look for supplemental experimental and alternative treatments. Case 2 illustrates the normative importance of communication and the ambiguities of its "delivery." A physician who comforts a patient without relaying crucial information has prized the emotional over informational dimensions at the expense of the patient. On the other hand, empathetic sensitivity to the particular circumstances of a patient may be crucial in conveying information needed by the patient to make a reasonable decision. Not all communication is verbal, and sometimes action without speech can constitute communication. For example, when medical staff perceive that a patient is dying they will sometimes gradually withdraw emotionally. This is felt by the patient or family not through any words but through the actual physical care.54 Nonverbal communication in the doctor's office also is accomplished through physical asymmetries: the physician, in white, and preceded by a nurse or assistant, appears walking and standing, to a half-dressed patient perched on an examination table, lying in bed, or sitting in a chair.

Case 3. A Recovering Cancer Patient One day in 1974, Natalie Davis Springarn was seated in a hospital corridor, about to return home after breast cancer surgery. Her doctors were reassuring about her results and prognosis; the cancer didn't appear to have spread. Then, a resident, a doctor in training, stopped to chat. How was she doing? Pretty well, Spingarn said, although sometimes she felt blue. Well, the resident said, her surgery would probably succeed, but had she read the book "On Death and Dying"?55

Recalling our discussion of the information-transfer model of communication, in this case, the well-meaning resident did transfer relevant information—a good book on the topic of death and dying to a patient who, after all, faced a life-threatening illness. But he did so ignoring other key factors in communication. If he had understood the woman as a communicative equal, he would have become informed about her current situation before he, as a medical professional, decided to bestow information upon a recipient whose need for that information he presumed rather than discovered.


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If he had also comprehended that medicine operates in practice as a series of collective communicative interactions, he would further have inquired into the prior communication of the medical team with the patient. He would have found that the team had conveyed a positive prognosis not only as a prediction, but also as a way of giving her hope, and therefore a constitutive element of her recovery. The resident's single isolated comment veered off in an opposing direction, undermining the prior communicative work of the physicians, nurses, and medical team. This divergence caused shock in the patient: "He was absolutely the first person who gave me the idea I was going to die. Everyone else gave me the idea I was going to live. I was just stupefied." 56 This case illustrates how medical practice works ideally as communicative action. The entire group of medical practitioners—physicians, surgeons, nurses, technicians, social workers, psychologists—cooperate as a collectivity in generating their own mutual understanding and collective interpretation so they may coordinate their action and treatment. Then as a team, they cooperate to communicate to their patient in a consistent and comprehensible manner. The case illustrates both this highly realized level of communicative action and the failure of the resident. It was because the team was well integrated and the patient confident, that the resident's discourse so jarred her. Finally, the resident's communication lacked comprehension of its impact and reception by another thinking, feeling being with her own subjective awareness. He failed in the ethical dimension of communication requiring mutuality. In discourse, this mandates taking into account the context and circumstances of one's linguistic utterances, and considering before one speaks the impact of one's utterance on the other. If the woman patient were comprehended merely as a information receptor site, the resident's utterance was appropriate, since it was true that she might die. But to the woman patient as a feeling, thinking subject, his utterance was ignorant, unconsidered, and insensitive. It reflected a lack of empathy, which calls for understanding the concrete situation of the other person. Empathic communication incorporates sensitivity to what the patient is feeling. Empathy is "co-feeling" or "feeling with" rather than merely sympathy or pity. Empathic communication demands that medical caregivers put themselves in the position of the patient and ask what would be appropriate and beneficial to the patient at this time. Empathy has both a cognitive component of understanding and an affective dimension of sharing feeling with the other.57 Empathic understanding and communication also demand that we comprehend others in their particularity, which leads us to the notion of the concrete other.

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The Generalized and the Concrete Other in Physician-Patient Communication Much mainstream ethical theory presupposes that the moral agent relates to another human being as a "generalized other," as feminist philosopher Seyla Benhabib has defined this term. For example, most rights-based ethics, including affirmations of patient rights, presupposes such a notion. So does Habermas's communicative rationality in his discourse ethics. From the vantage point of my analysis, we would be wise to retain this standpoint in its place and also affirm rights.58 However, in a medical context, this perspective taken alone remains inadequate, for the reasons given above dealing with power and authority as exemplified in gender and racial difference. Transformation of actual discourse patterns must, as I have argued, be flexible and fluid enough to take account of situational power in a way that can be addressed only in particular cases. So I would argue that these two standpoints complement each other. In many institutionalized discourse settings where we would want to adopt a normative ideal of communicative action, this guiding norm will only be adequate if we complement each perspective with the other. The standpoint of the generalized other, as Seyla Benhabib characterizes it, "requires us to view each and every individual as a rational being entitled to the same rights and duties we would want to ascribe to ourselves . . . and is governed by the [primarily public and institutional] norms of formal equality and reciprocity." 59 In contrast, viewing someone from the standpoint of the concrete other "requires us to view each and every rational being as an individual with a concrete history, identity and affective-emotional constitution. ... In treating you in accordance with the norms of friendship, love and care, I confirm not only your humanity but your human individuality." 60 The generalized other is certainly represented in current bioethical theory, which promotes humanizing the physician-patient relation and defending the principles of patients' rights. Bioethics usually generalizes "the patient," depicting that person as a rational risk-taker, a bearer of rights, and an autonomous decision maker, giving or withholding informed consent to medical procedures. The standpoint of the generalized other also involves, in Kohlberg's words, "role-taking, taking the viewpoint of the others conceived as subjects and coordinating these viewpoints." 61 In communicative ethics, viewing the patient from the standpoint of the generalized other involves granting the rights of patients to speak, to question, to challenge, and to express themselves. Regarding the patient as a generalized other allows a more distanced and less intimate relationship than viewing a patient as a concrete other. The phy-


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sician may carry out duties, recognize the patient's rights, explain the relevant information as he himself would want it explained, and thereby hope to realize the moral demands of one version of communicative ethics, all without recognizing the individuality of the patient. In contrast, viewing the patient from the standpoint of a concrete other requires an awareness of each patient as an embodied individual, with particular wants, needs, and affect. This standpoint is more capable of handling differences, including gender differences, in communication within a physician-patient relationship. This standpoint of a concrete other becomes especially important in dealing with a patient and a physician who each have a specific history of gender relations, of racial and ethnic identity, a socioeconomic situation, a certain education, and so on. This can be easily illustrated by the gender differences in communicative interaction. When physician authority over patients is overlaid upon male-to-female patterns of communicative dominance, dominance-subordination relations are compounded. But just as feminists such as Susan Moller Okin have criticized the viewpoint of the generalized other in John Rawls's Theory of Justice, for example, for making gender differences invisible, so the viewpoint of the generalized other would make gender differences in physician-patient communication invisible.62 It would also make racial, socioeconomic, and educational differences invisible. One might find a very different communicative interaction between, say, a young African American woman physician encountering an older working-class white male patient, and an older white male physician encountering an Asian American woman patient from a background of poverty. The gender, cultural, racial, and economic situation of particular persons can all be expected to influence communication. These factors begin to show why the physician has a moral obligation to view the patient as a concrete other. That obligation is grounded in the specialized role-responsibility of the physician to serve the patient. The physician will need to understand the patient in her or his particularity in order to work with the patient and engage in decision making with the patient that is based on the patient's values and experience. Mutual understanding is a requirement of communicative ethics, as Habermas and feminist critical theorists emphasize. But a formal principle of reciprocal understanding will play out differently in physician-patient discourse because of the role-responsibility of the physician. For example, a patient need not understand her physician's current aversion to scenes of death (perhaps because his father just died), while the physician does need to understand his patient's current aversion to surgery. This asymmetry means the patient may view

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the physician as a generalized other, whereas the physician ought to view the patient as a concrete as well as a generalized other. The importance of physician empathy toward the patient also seems to demand that physicians view the patient as a concrete other. Benhabib develops the distinction between the generalized and concrete other as "two conceptions of self-other relations" that delineate both "moral perspectives and interactional structures." 63 Empathy is conditional on the perception of the concrete other because empathy depends on knowledge of particularity, and perhaps a degree of intimacy. Empathy is therefore both a moral norm and an interactional possibility. The distinction between a generalized and a concrete other again illuminates the incompleteness of an information-transfer model of communication. That model fails to regard each patient as a concrete other. The model of the patient as rational risk-taker views the patient as a generalized other. The surgeon taking this view would see the heart patient as irrational if she let her emotions stand in the way of what is, in his view, medically and immediately indicated. In contrast, a view of patients in their plurality and diversity as concrete others allows for a moral perception incorporating the individuality of this specific person in this specific situation.64

Ethical Principles in Medical Communication In communicative ethics as developed and articulated by Seyla Benhabib, we find two universal meta-principles, respect and equal worth, underlying a "context-sensitive moral judgment." 65 These take a certain form in institutional settings such as medical practice, where physician role-responsibility creates an institutionalized asymmetry, and role differentiation, including degree of technical knowledge, confers on the physician an authoritative status not possessed by the patient. Those in subordinated positions, including women, often manifest a heightened awareness of communication and its importance in signaling relative power and authority. Yet authority and power are often invisible to those who exercise them. This includes professionals such as physicians who are dedicated to compassionate action and who are committed to their patients' comprehension of medical procedures. But good communication, communication that is ethically adequate as well as effective, may also give patients power. Here power is understood as "the capacity to implement" one's life prospects and affirm one's self-worth, rather than as "power over" others, the ability to dominate and control them.66 The following principles may serve as preliminary criteria of adequacy for ethically adequate communication.


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Principles of Equality • Equal worth of each patient and the patient's right to be heard • Equal ability of the patient to challenge presuppositions of the speaker • Effort to include each patient's voice, attending to gender and cultural differences Principles of Respect • Respect for the person • Empathic communication • Support for patient's process and choice • Mutual agreement between physician and patient • Mutual understanding The equality principles call for acknowledging the equal worth of each person, as a human being and hence as a communicative participant. This requires giving each participant an equal chance to speak and be heard, to listen and comprehend. It also requires actively supporting the capacity of the patient to question and challenge the physician. Finally, gender, racial, ethnic, and class differences are acknowledged as positive differences in communicative practice, and must be dealt with in order to facilitate full communicative participation. These principles urge the physician to recognize the patient within discourse as a concrete other.67 In traditional bioethical terms, the demand for equality may be said to flow from the requirements of justice, whereas the substantive principles of respect may be said to originate in and spell out more particularly the physician's role-responsibility of beneficence in the context of communication and action. Realization of the principles of respect requires mutuality. A pattern of speech acts among communicants should acknowledge, recognize, and address the assertions of other communicants, and do so in an open and supportive manner. Respectful communication recognizes the humanity of the patient. It involves listening, as well as attentiveness to the state of the person with whom one is communicating. It also involves truth-telling, but does so in a way that acknowledges the particular patient's condition and possible responses. The term 'excessive disclosure' indicates what might violate a principle of respectful communication. But communicative respect for the patient would do more than strike the mean between too much and too little disclosure. It would include the qualitative dimension as well. Respect would take the temper of this particular patient, in contrast to generalized versions of "the patient," and accordingly demonstrate a responsiveness to the other as a conscious subject. Both respect and empathy as defined here require recognizing the patient as a "concrete other" rather than solely

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as a "generalized other." And they require a moral sensitivity to the particularity in moral situations. The process of communicative action that underlies authentic and humane treatment of patients also underlies informed consent. If authentic, educated informed consent truly takes place, it does so because a process of communication, in the amplified sense of communicative action, occurs between patient and physician. This process is not merely a sequence of information transfers, culminating with a signed legal form simplistically titled 'the consent' as its end point. In a truly consensual process, patients must be able to question or challenge fully any claim raised implicitly or explicitly in the communication. The point is not that style overrides content, and that bedside manner eclipses whether one tells the truth or lies, gives good technical care or merely comforts patients.68 One need not discard reason, but must balance it with the recognition of emotion. After all, from the physician's standpoint, one cannot even treat a patient who commits suicide as in Case 1, so it is not rational to discount patients' emotional reactions to communicative utterances.69 Moreover, respectful communication need not avoid conflict or disagreement. Even if conflict between physician and patient is inevitable,70 we would not be wise to avoid it by implicitly encouraging patients to act in a compliant manner71 or speak in a less assertive mode. Openness and exploration of difference need not be conflated with disagreement, and disagreement need not be confused with conflict. Finally, the focus on communication itself, with the above emphases, recognizes the importance of women's experience for both women and men in contemporary medical contexts. Because women traditionally have been given many of the tasks of communication—in nurturant contexts, in the family, and in health care—women in the aggregate may have more developed moral sensitivity. But this is a historical development, not an essential condition. Insofar as this chapter features a concept of communication in contextually aware and responsive relationship rather than a model of communication as simply the transfer of information, it represents a feminist viewpoint on communication. It is one that women and men have more or less realized in actual situations, and one that many women, denied full agency, have been barred from achieving in action. It presents an ideal of fully equal human values.

Conclusion In one dominant theory of clinical decision making, a rational calculator weighs the risks and benefits of a particular series of treatment options, decides on the optimal plan, states his or her preferences, then


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executes the plan. This theory abstracts the rational element from a web of complex forces, especially the human relationships in the medical process. It also ignores the interactive nature of discourse or communication, in which decisions are produced from the interaction itself and partly because of such interaction. Finally, it treats ethical values as something generated outside the communication by educated elites, rather than as a result of communication itself. To regard communication as one thing, and decision making followed by action as another is a too simple a view. Rather, communication is a form of action and the source of values. It takes place within relationships, and simultaneously creates the shared meaning of these relationships, whether these be relationships of knowledge and connection, or relationships of power and authority, or some combination of both as physician-patient relationships often are. As a feminist, humane approach would advocate, and as I have suggested here, only a compassionate, open, and mutual communicative process respects all persons in medical contexts.

Notes My thanks to the Hastings Center Project on Feminism and Bioethics for support and helpful discussion. Partial support for completion of this chapter came from a 1993 Faculty Research Grant from the University of Massachusetts at Boston. My thanks to the many people whose discussions helped clarify issues in this chapter: Seyla Benhabib, Larry Blum, Bernadette Brooten, Fred Dallmayr, Ann Diller, Sue Fisher, Susan Franzosa, Nancy Fraser, Barbara Huston, Mary Mahowald, Jane Martin, Joanne Preston, Jennifer Radden, Mary Schmidt, Susan Sherwin, Jennifer Starr, and Marcia Yudkin. My thanks especially to Susan Wolf whose astute comments have been inspiring and beneficial. 1. Initially Habermas proposed communicative ethics as a meta-ethical project validating universal norms by an "ideal speech situation." But recently after objections by friendly critics, he has moved to stress the validation of concrete values and norms in actual practice. For criticism from a feminist philosophical viewpoint, see Seyla Benhabib, Critique, Norm and Utopia (New York, NY: Columbia University Press, 1986); Seyla Benhabib and Drucilla Cornell, eds., Feminism as Critique: On the Politics of Gender (Minneapolis, MN: University of Minnesota Press, 1987); Seyla Benhabib, Situating the Self: Gender, Community and Postmodernism in Contemporary Ethics (New York, NY: Routledge, 1992); Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990); Nancy Fraser, Unruly Practices: Power, Discourse and Gender in Contemporary Social Theory (Minneapolis, MN: University of Minnesota Press, 1989). 2. Jurgen Habermas, "Discourse Ethics: Notes on a Program of Philosophical Justification," in Moral Consciousness and Communicative Action, Christian Lenhardt and Sherry Weber Nicholson, trans. (Cambridge, MA: MIT Press, 1990), 65. My analysis is based on this and the following works by Jurgen Habermas: The Theory of Communicative Action, Volume I., Reason and the Rationalization of

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Society, Thomas McCarthy, trans. (Boston, MA: Beacon Press, 1981) (hereafter abbreviated TCA,I); The Philosophical Discourses of Modernity: Twelve Lectures, Frederick G. Lawrence and Sherry Weber Nicholson, trans. (Cambridge, MA: MIT Press, 1990). My analysis relies mainly on Habermas's theory of action, rather than on his theory of universal pragmatics and symmetrical speech conditions. The two aspects taken together constitute his full theory. For my analysis of Habermas's pragmatics in medical discourse, especially his validity claims, see my unpublished manuscript, "Asymmetries and Inequalities in Medical Communication." 3. Societal norms in physician-patient relations would be grounded on certain universal "constraints" on consensus processes within public discourse. These universal constraints may be taken to be respect and equal worth, or egalitarian reciprocity. My position here stands in basic agreement with what Seyla Benhabib describes as "interactive universalism," rather than the more cognitivist and formalist version of universalism found in Habermas's work. Benhabib attempts to "expand moral cognitive universalism beyond its rationalistic limitations" by incorporating the standpoint of the "concrete" as well as the "generalized other" which I discuss below in medical contexts (see the section titled "The Generalized and the Concrete Other in Physician-Patient Communication"). She also affirms a "historically self-conscious universalism." She says: "Universalism" in morality implies first of all a commitment to the equal worth and dignity of every human being in virtue of her or his humanity; secondly, the dignity of the other as a moral individual is acknowledged through the respect we show for their needs, interests and points of view in our concrete moral deliberations. Benhabib, Situating the Self, 51, 185. For Habermas's discussion on universalism, including his critique of a relational moral orientation in Carol Gilligan's work, see "Moral Consciousness and Communicative Action," and "Discourse Ethics: Notes on a Program of Philosophical Justification," in Moral Consciousness and Communicative Action, 43-115, 116-94. 4. A model is a reconstruction of a way of thinking, not a set of propositions that anyone, physician or patient, need explicitly propound. Rather, it is a distilled set of idealized characteristics which helps us isolate the central features from a range of phenomena. Philosophers of science have analyzed models in science. See, for example, Mary Hesse, Models and Analogies in Science (London, England: Sheed and Ward, 1963). T. S. Kuhn's notion of "paradigm" gives an important analysis in The Structure of Scientific Revolutions, 2d ed. (Chicago, IL: University of Chicago Press, 1963). 5. See John Luce, "Ethical Principles in Critical Care," Journal of the American Medical Association, 263 (1990): 696-700, 698: "Whether or not they offer CPR, physicians should explain their position to patients or surrogates wherever possible." 6. Barbara M. Korsch, Ethel K. Gozzi, and Vida Francis Negrete, "Gaps in Doctor-Patient Communication," Pediatrics 42 (1968): 855-71. Barbara M. Korsch and Vida Francis Negrete, "Doctor-Patient Communication," Scientific American 227 (Aug. 1972): 66-74. 7. Alexandra Dundas Todd, Intimate Adversaries: Cultural Conflict Between Doctors and Women Patients (Philadelphia, PA: University of Pennsylvania Press, 1983), 16, with Todd's description of research by P. S. Byrne and B. E. Long, Doctors Talking to Patients (London, England: Her Majesty's Stationery Office, 1976).


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8. Norbert Weiner, The Human Use of Human Beings (Boston, MA: HoughtonMiflin, 1954), 15-16. 9. This is so, despite the fact that substantial attempts have been made to build communication skills into medical education. There is already a large literature on health communication skills in medical education. For a few examples, see Jack Mason, "Evaluation of a Self-Instructional Method for Improving Doctor-Patient Communication," Journal of Medical Education 63 (1988): 629-35; David Pendelton, "Towards More Effective Medical Practice," Journal of Applied Communication Research 13 (Fall 1985): 96-102; Stewart Auyash, "Exploring the Impact of Technology on Communication in Medicine and Health," Communication Quarterly 32 (1984): 91-97; Maria Liberman, "Development of a Behavior Rating Scale for Doctor Patient Interactions and Its Implications for the Study of Death Anxiety," Omega: Journal of Death and Dying 14 (1984): 231-39. 10. Liberman, "Development of a Behavior Rating Scale." 11. TCA,I, 305-10. See J. L. Austin, How to Do Things With Words (Oxford, England: Oxford University Press, 1962); John Searle, Speech Acts (London, England: Cambridge University Press, 1969). 12. See Frankel's study of the "interactive behavior" between physicians and patients. His research is designed to study the "generalized rules of social conduct that instantiate a medical encounter from beginning to end." Richard M. Frankel, "The Laying on of Hands: Aspects of the Organization of Gaze, Touch and Talk in a Medical Encounter," in Sue Fisher and Alexandra Dundas Todd, eds., The Social Organization of Doctor-Patient Communication (Washington, DC: Center for Applied Linguistics, 1983), 19-54, 20. 13. Sue Fisher, In the Patient's Best Interest: Women and the Politics of Medical Decisions (Brunswick, NJ: Rutgers University Press, 1986), 44-46. 14. Power can be taken as the ability to control, e.g., actions of other persons or action by systems. Authority can be taken generally as perceived legitimacy. 15. Candace West, "'Ask Me No Questions,' An Analysis of Queries and Replies in Physician-Patient Dialogues," in Fisher and Todd, eds., The Social Organization of Doctor-Patient Communication, 75-106, 76. See also, as a general reference, William Labov and David Fanshel, Therapeutic Discourse: Psychotherapy as Conversation (New York, NY: Academic Press, 1985). 16. One study estimated 8 minutes to establish the diagnosis. See Todd, Intimate Adversaries, 16. 17. Frankel, "The Laying on of Hands," 19. Also West, " 'Ask Me No Questions,' " 77. 18. Fisher, In the Patient's Best Interest, 44-45. See more recently, Sue Fisher, Nursing Wounds: Negotiating Gendered Meaning in Nursing and Medical Consultations (New Brunswick, NJ: Rutgers University Press, forthcoming). 19. We might note in passing that this point raises issues about fundamental constraints on a consensus. For example, suppose a society decides informed consent is not necessary for human experimentation. In Habermas's and Benhabib's views, such a position would presumably not be justified, because it violates the universal condition of respect for persons. The values of respect for persons and equal worth (or reciprocal egalitarianism) are taken here as universal presumptions without the extended argumentation it would take to ground them. Benhabib calls these norms "universal respect" and "equal worth." Sometimes she uses the phrase "egalitarian reciprocity" for the second norm, which might have different—and stronger—implications for mutual dia-

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logue in institutionalized settings such as the physician-patient relationship. See Benhabib, Situating the Self, 45. 20. I have deviated from Habermas's position here in two respects. One is to take communicative action and strategic action as models that might be exemplified in one and the same course of actual human action, i.e., as "designating two analytic aspects under which the same [course of] action could be described." This model-theoretic approach is precisely what Habermas rejects in the preceding sentence quoted from TCA,1, 286. However, I am emphasizing a sequence of actions that could exhibit different levels of both communicative, consensual action and strategic action accompanied by purposive-rationality (Zweckrationalitat). In my view, it is difficult to interpret institutionalized technical-medical practice otherwise. A model-theoretic approach has ample epistemological precedent in philosophy of science. My second deviation abstains from identifying strategic action with merely persuasive speech acts, or, as Habermas originally says, those designed to produce effects rather than develop understanding. In other words, on my analysis, a patient might give consent in an informed, free discourse which is then followed by 'strategic action' in a team effort including physicians, nurses, patients, technicians, and pathologists, calculating through a collective process what technical means is best suited to the consensually agreed-upon end. For discussion on Habermas's disputed point about strategic action identified with persuasive (or perlocutionary) speech acts, see David Rasmussen, Reading Habermas (Cambridge, MA: Blackwell, 1990), 35-41. 21. Talcott Parsons, The Social System (Glencoe, IL: Free Press, 1951), 435-39. 22. Fisher, In the Patient's Best Interest, 44-46. 23. Jay Katz, The Silent World of Doctor and Patient (New York, NY: Free Press, 1984). 24. In Habermas's terminology, raising such questions would be thematizing an implicit validity claim, in this case dealing with the correctness of a "regulative" speech act (such as an order to stop smoking or take certain medications). In questioning physician speech acts, a patient questions not merely a simple imperative such as "Close the door," but a "normatively authorized imperative" within an "institutionalized framework authorizing" those in certain positions to give orders. See TCA,I, 300 ff. Although Habermas does not explicitly discuss medicine in TCA,I, I am employing his concepts to analyze medical practice. 25. Todd stresses the fact that patients are sick, in contrast to doctors who are healthy and familiar with the "gadgets, procedures and options" of current medicine. "If time constraints and economic considerations are added, the result is a relationship that begins in struggle." Todd, Intimate Adversaries, 16. On adversarial relations, see my articles, "A Critique of Adversarial Discourse: Gender as a Form of Cultural Difference," in Lawrence Foster and Patricia Susan Herzog, eds., Defending Diversity: Contemporary Philosophical Perspectives on Pluralism and Multiculturalism (Amherst, MA: University of Massachusetts Press, 1994), 59-82; and "Adversarial Models of Reasoning in Abortion Conflict," paper delivered at the University of Pittsburgh, Society for Women in Philosophy Conference on Feminist Ethics and Social Policy, November, 1993. 26. On the term "lifeworld" in medicine, see Eliot Mischler, The Discourse of Medicine (Norwood, NJ: Ablex Press, 1984). See also the discussion of lifeworld as both a resource and topic in Kenneth Baynes, The Normative Grounds of Social Criticism: Kant, Rawls and Habermas (Albany, NY: SUNY Press, 1992), 79-85.


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"Lifeworld" can be a useful concept in analyzing miscommunication. It can be defined as one's experienced culture, that is, one's acquaintance with customs and worldviews as "the culturally transmitted and linguistically organized stock of interpretive patterns." Habermas says, "Subjects acting communicatively always come to an understanding in the horizon of a lifeworld. Their lifeworld is formed from more or less diffuse, always unproblematic, background convictions. This lifeworld background serves as a source of situation definitions that are presupposed by participants as unproblematic." TCA,I, 70. I do not rely on 'lifeworld' as an explanatory category in my analysis, preferring instead to focus on actual discourse interactions and a concept of communicative as opposed to merely strategic action. For example, one might think it possible to subsume gender differences under the rubric of the lifeworld, especially since gender can be viewed as a situational dimension of individuals. But this, although possible, is too narrow. We must recognize that gender forms a structural dimension within discourse itself, implicating not only communicative equality but also the fundamental modes in which norms and values are discussed, reasons given, and alternatives explored. To meet a condition of egalitarian reciprocity one would have to recognize one's partner in discourse as a "concrete other" with a particular ethnic, racial, and gender identity. See discussion below in the section titled "Ethical Principles in Medical Communication." 27. A similar point holds in the legal profession. See critique of the U.S. adversarial system in David Luban, Lawyers and Justice: An Ethical Study (Princeton, NJ: Princeton University Press, 1988), and David Luban, ed., The Good Lawyer: Lawyers' Roles and Lawyers' Ethics (Totowa, NJ: Rowman and Allenheld, 1984). 28. Candace West and Don Zimmerman, "Small Insults: A Study of Interruptions in Cross-Sex Conversations between Unacquainted Persons," in Barrie Thorne et al., eds, Language, Gender and Society (Cambridge, MA: Newbury House, 1983), 103-19. 29. Howard Giles, Language: Social Psychological Perspectives (Oxford, England: Pergamon Press, 1980); John J. Gumperz, ed., Language and Social Identity (Cambridge, England: Cambridge University Press, 1980); Nancy Henley and Chris Kramarae, "Miscommunciation, Gender and Power," in Nikolas Coupland, John M. Wiemann, and Howard Giles, eds., Handbook of Miscommunication and Problematic Talk (Bristol, England: Multilingual Matters, 1990); Chris Kramarae, Women and Men Speaking (Rowley, MA: Newbury House, 1981); Judith Orasanu, Miriam Slater, and Leonore Adler, eds., Language, Sex and Gender, (New York, NY: New York Academy of Sciences, 1979); Deborah Tannen, Talking Voices: Repetition, Dialogue and Imagery in Conversational Discourse (Cambridge, England: Cambridge University Press, 1989); Thorne, Kramarae, and Henley, eds., Language, Gender and Society . 30. Dore Butler and Florence L. Geis, "Nonverbal Affect Responses to Male and Female Leaders: Implications for Leadership Evaluations," Journal of Personality and Social Psychology 58 (1990): 48-59. 31. Council on Ethical and Judicial Affairs, "Gender Disparities in Clinical Decision Making," Journal of the American Medical Association 266 (1991): 559-62. 32. Susan Sherwin says Feminist analysis [of patients' diminished reasoning power] requires attention to the gendered assumptions that are implicit in the ways medicine views patients. For instance, it is important to remember that women enter the role of patient far more frequently than men do. . . . Because of women's heightened contact with the institution of medicine and because of their oppressed status in society

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generally, special attention should be paid to the ways in which the practice of medical paternalism contributes to women's disempowerment in both the medical and social realms. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 141. However, we must also note the following factors that make the gender situation more complex: (1) Physician-to-patient dominance results from a social and professional role, not anything essential about the relationship; a patient's wealth, class, and racial factors may play as large a role as gender in a particular interaction. (2) Physicians are trained, in addition to medical skills, into what has been called a professional class, and a professionalized role that assumes a social dominance. See an extensive literature in the sociology of medicine, including Parsons, The Social System, 428-80; Eliot Friedson, Professional Dominance: The Social Structure of Medical Care (New York, NY: Aldine, 1970); Renee Fox, The Sociology of Medicine (Englewood Cliffs, NJ: Prentice-Hall, 1989), ch. 2, 38-72. A female physician, for example, may identify more with her professional role than her gender and create a dominance relation with a woman patient. (3) A sexist maleto-female dynamic may crisscross with professional dominance when one observes a female physician relating to a male patient who may be sexist, harassing, or violent. (4) Most important, data show that male patients receive better care than female ones with respect to certain treatments, and according to certain studies by medical sociologists, male physicians deliver better attention to their "own kind" (male professionals). The status of dependency may be feminized. This is the thesis of recent writing by Nancy Fraser and Linda Gordon in "A Genealogy of Dependency: Tracing a Keyword of the U.S. Welfare State," Signs 19 (1994): 309-36. Then if patients are viewed as dependent, they may occupy a feminized position potentially subject to devaluation. It is important to emphasize the qualifier 'potentially' because of the reality that men often receive better medical care than women. 33. Sociologist Alexandra Todd claims that "good technical care, the domain of modern medicine, is put at risk at its most crucial intersection—communication between doctor and patient." She has diagnosed three habitual patterns that relate to above data on gender differences and apply to the mostly female patient population in her study on contraceptive care: "Pattern 1. Patient has relevant information and tries to express it; Doctor interrupts patient. Pattern 2. Patient unaware; does not try to express information. Doctor has relevant information; withholds information. Pattern 3. Patient has relevant information; withholds information. Doctor unaware; does not try to express information." In my observation here, Patterns 2 and 3 relate to female patients' lack of assertiveness. Pattern 1 relates to female patients' habituation to interruption. See Todd, Intimate Adversaries, 81. 34. Roger Shuy, "Three Types of Interference to an Effective Exchange of Information in the Medical Interview," in Fisher and Todd, eds., The Social Organization of Doctor-Patient Communication, 189-202, 192, quoted by Todd, Intimate Adversaries, 16. See also analyses of white biases toward speakers of socalled "black English" in the classic article by William Labov, "The Logic of Nonstandard English [NSE]," reprinted in Pier Paoli Geglioli, ed., Language and Social Context (New York, NY: Penguin Books, 1972), 179-217. 35. Todd, Intimate Adversaries, 77.


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36. The point applies in many types of interviews including informational exchange. An interviewer who is an employer, physician, etc., selects criteria of relevance and directs the exchange. 37. See Habermas, TCA,I, 305-12. 38. Linda and Ezekiel Emanuel's criticism of what they call an "informative" model of the physician-patient relationship articulates a point similar to my main criticism. They remark that a physician following such a model "lacks a caring approach that requires understanding." My argument and terminology differ in that I emphasize that information is necessary for patient understanding and for scientific-technical accuracy, but that physicians cannot be constructively "informative" unless they embed such information within a richer model of communicative action and an ethics of mutuality. See Ezekiel J. Emanuel and Linda L. Emanuel, "Four Models of the Physician-Patient Relationship," Journal of the American Medical Association 267 (1992): 2221-26, 2224. 39. Todd, Intimate Adversaries, 16. The phrase "ceremony of sickness" and the notion of the "sick role" are from Parsons, The Social System, 434-38. 40. Katz, The Silent World of Doctor and Patient. See especially his reiteration of his position in "Preface to the Paperback Edition," xi. 41. Ibid., ch. VI, 130-65. See also Richard Zaner, "Medicine and Dialogue," Journal of Medicine and Philosophy 15 (1990): 303-25. 42. Nancy Fraser, "Rethinking the Public Sphere," in Craig Calhoun, ed., Habermas and the Public Sphere (Cambridge, MA: MIT Press, 1991), 56-79. 43. Patients constitute a revolving population, a "statistical status group" in Parsons's terminology. See The Social System, 434-38. This differs from a lifelong assignment such as gender or a durable social status such as poverty. 44. See Nancy Fraser on the "Politics of Need Interpretation," chs. 7, 8, in Unruly Practices. See also Fraser and Gordon, "Dependency as a Discourse Category." 45. Young, Justice and the Politics of Difference, 118-19, 134-36. 46. Benhabib, Situating the Self, 51. 47. Benhabib criticizes Habermas's cognitivist and formalist approach and modifies his universalist version of these methods by her concept of "interactive universalism." She also makes a distinction between 'rationalist' and 'cognitivist' ethics, urging a departure from the Kantian influence on mainstream ethics. In medical practice, as in life, it may be rational to include affective dimensions, but in her view these would be obscured by a purely rationalist ethics or meta-ethics. See ibid. 48. These issues connect with a long-standing theoretical dispute between Habermas and Foucault, who recognizes no power-free interactions and interprets each social interaction as predominantly subject to the "micro-structures" of power rather than appeal to normative or ethical ideals. See Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York, NY: Vintage Books, .1987); Michel Foucault, Power/Knowledge: Selected Interviews and Other Writings 1972-1977, Colin Gordon, ed. (New York, NY: Pantheon, 1972). See additional works in The Foucault Reader, Paul Rabinow, ed. (New York, NY: Pantheon, 1984). Epistemological and logical difficulties in his rejection of humanistic ethical values are clarified by Nancy Fraser, who argues that to give a normative critique of existing social structures from Foucault's perspective involves one in a "performative contradiction." See "Michel Foucault: A 'Young Conservative'," ch. 2 of Fraser, Unruly Practices. Habermas criticizes Foucault as follows:

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Foucault cannot adequately deal with the persistent problems that come up in connection with an interpretative approach to the object domain, a self-referential denial of universal validity claims, and a normative justification for critique. The categories of meaning, validity and value are to be eliminated not only on the metatheoretical, but on the empirical level as well.

Jurgen Habermas, Lecture X, "Some Questions Concerning the Theory of Power: Foucault Again," in The Philosophical Discourses of Modernity, 286. 49. Obviously the term "physician" is used broadly here in a functional sense, to mean the one who holds major duties and responsibilities for medical care, encompassing physicians and surgeons. 50. This analysis might hold despite the possibility that the surgeon thought of his enterprise as a shared project. 51. The distinction, derived in part from the social theorist Max Weber, is used by Habermas to stress how communicative action creates shared meanings in social context. See TCA,I, 273-90. See above the section titled "Communicative Action as a Model for Medical Discourse and Practice." Strategic action requires a conscious agent acting to achieve a given end, but does not necessarily require the agent's interaction with a conscious subject. 52. An exception may be certain forms of neurosurgery in which a conscious patient provides necessary feedback to the surgeon. 53. Robert Veatch might stress the physician's interacting with her as a "partner" signaled by a contract between the two. But this is a different notion from Habermas's communicative mutuality, since each partner to a contract may view and treat the other as a means to the end of a strategic action. Thus the notion of medical practice as communicative action goes beyond Veatch's notion of contract, although it does share the view that patient and physician share responsibility in a collectively created interaction. See Robert M. Veatch, The Patient-Physician Relation: The Patient As Partner, Part 2 (Bloomington, IN: Indiana University Press, 1991). 54. Nonverbal communication is especially important in medical situations where the institutionalized lines of authority are reflected in appearance, frequency of presence, physical actions communicating deference to authority (such as stepping aside for a superior or failing to speak out in his presence), the types of tasks performed by various medical personnel, and so on. 55. The story comes from Natalie Davis Springarn, quoted in Betsy A. Lehman, "Bridging the Doctor-Patient Divide," Boston Globe, November 5, 1990, pp. Cl, 4. Springarn, now a director of the National Coalition for Cancer Survivorship, has worked ever since on improving doctor-patient communication, writing, speaking, and making a videotape for the American Cancer Society. 56. The quote is from Natalie Davis Springarn. Ibid. 57. For discussion on the psychological aspects of empathy see Judith V. Jordan, Janet L. Surrey, and Alexandra G. Kaplan, "Women and Empathy: Implications for Psychological Development and Psychotherapy," in Judith V. Jordan, Alexandra G. Kaplan, Jean Baker Miller, Irene Stiver, and Janet L. Surrey, eds., Women's Growth in Connection: Writings from the Stone Center (New York, NY: Guilford Press, 1991), 27-50. For philosophical discussion of the significance of moral emotions, see Lawrence Blum, Moral Perception and Particularity (Cambridge, England: Cambridge University Press, 1994). For an account of empathy, defined as "shared attitudes, sentiments, or emotions," from the vantage point of cognitive science, see Alvin Goldman, "Empathy, Mind and Morals," Presidential Address, Pacific Division, Proceedings and Addresses of the American Philosophical Association 66 (1992): 17-41.


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58. For a related line of argument, compare Susan M. Wolf, "Ethics Committees and Due Process: Nesting Rights in a Community of Caring," University of Maryland Law Review 50 (1991): 798-858; Susan M. Wolf et al., "Sources of Concern About the Patient Self-Determination Act," New England Journal of Medicine 325 (1991): 1666-71. For a relational analysis of rights see Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990). 59. Benhabib, Situating the Self, ch. 5, 158-59. 60. Ibid. 61. Lawrence Kohlberg, "Justice as Reversibility: The Claim to Moral Adequacy of a Highest Stage of Moral Development," in Essays on Moral Development, Vol. 1: The Philosophy of Moral Development (San Francisco, CA: Harper and Row, 1981), 190-226, 194, quoted in Benhabib, Situating the Self, 159. 62. Susan Moller Okin, Justice, Gender, and the Family (New York, NY: Basic Books, 1989). See John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1972). 63. Benhabib, Situating the Self, ch. 5, 158-59. 64. See Blum, Moral Perception and Particularity, 30-65. See also Iris Murdoch, The Sovereignty of Good (London, England: Routledge and Kegan Paul, 1970). 65. Benhabib, Situating the Self, 8. 66. The distinction between "power over" and "power as capacity to implement" is made by many feminist theorists. See, for example, Nancy Hartsock, Money, Sex and Power (Boston, MA: Northeastern University Press, 1985). For psychological dimensions, see feminist psychoanalyst Jean Baker Miller, Toward a New Psychology of Women (Boston, MA: Beacon Press, 1980), 24. The distinction parallels C. B. MacPherson's distinction between "developmental power" and "extractive power" in Democratic Theory: Essays in Retrieval (New York, NY: Oxford University Press, 1978), 69-81. 67. See Axel Honneth, Patterns of Recognition (Albany, NY: SUNY Press, 1994). Honneth has criticized the linguistification of Habermas's theory. My approach bases recognition and moral emotions such as empathy within discourse but recognizes a broader expression than a purely linguistic one. See also Honneth, "The Social Dynamics of Disrespect: On the Location of Critical Theory Today," Inaugural Lecture, Institute for Foundations of Politics, Free University of Berlin, November 2, 1993, also delivered at the Center for European Studies, Harvard University, December 14, 1993. 68. Sir Francis Bacon warned: "Physicians are some of them so pleasing and comfortable to the humor of the patient, as they press not the true cure of the disease." "Of Regiment of Health," in Essays (London, England: J. M. Dent, 1972), 98-99, 99. Patients also rate good technical care very highly in physician behavior. See Robert M. Arnold and Lachlan Forrow, "Rewarding Medicine: Good Doctors and Good Behavior," Annals of Internal Medicine 113 (1990): 79477. 69. Conversely, there are various accounts of emotion that postulate rational elements within emotion. See Martha Nussbaum, The Fragility of Goodness: Luck and Ethics in Greek Tragedy and Philosophy (Cambridge, England: Cambridge University Press, 1986). 70. Katz, The Silent World of Doctor and Patient, ch. IV, especially 85-101. 71. Susan M. Wolf, "Conflict Between Doctor and Patient," Law, Medicine & Health Care 16 (1988): 197-203.

8 Ethical Obstacles to the Participation of Women in Biomedical Research Vanessa Merton

Being different from men [has] meant being second-class and less than equal for most of recorded time and throughout most of the world. —Bernadine Healy, M.D., former Director of the National Institutes of Health1

Biomedical research has failed to address the health needs of women. The eligibility criteria in many scientific protocols explicitly bar some or all women.2 Other, apparently gender-neutral criteria in clinical trials in fact operate to exclude women.3 Biomedical research has concentrated on the investigation of health problems as they affect men—not surprisingly, largely explored in male research subjects.4 Until quite recently, bioethical analysis has failed to recognize and analyze the ethical issues inherent in this situation. This chapter scrutinizes the arguments that have been used to justify the exclusion of women from biomedical research. Bringing to bear a feminist critique, I suggest that those arguments fail to justify that exclusion. They add up to little more than misguided paternalism, spurious scienticism, and a near obsession with the risk to potential offspring that continually privileges their theoretical, future well-being

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over the health and lives of actual, existing women. Elsewhere I rebut the claim that the dictates of government regulation or researchers' desire to minimize their exposure to legal liability warrant their exclusionary practices.5 Feminist analysis of the exclusion of women and their health concerns from biomedical research immediately identifies a familiar phenomenon. The male is deemed normal, generic, and inclusive of the female, while the female is "special," "different," and certainly not inclusive of the male.6 Thus, research conducted exclusively with male subjects is "human subjects research." 7 Cultural assumptions—sometimes unspoken—that make the failure to include women in research seem "natural"8 are, I suggest, what really sustains the various explicit arguments offered to justify the exclusion of women from biomedical protocols. By challenging these explicit arguments in this chapter, I seek also to unmask this tendency to equate the male and the human, and its powerful influence on the direction and conduct of biomedical research.

The Harm Caused by Excluding Women Feminist ethical analysis teaches that it is often fruitful to attend to issues that male-centered ethical theory has neglected. Although "equitable selection of subjects" 9 has been required in federally funded research and subject to Institutional Review Board (IRB) validation since 1974, the concern for equitable selection has largely been confined to avoiding exploitation of vulnerable populations such as prisoners. 10 Scandals such as the Tuskegee Syphilis Trials11 motivated efforts to protect research subjects by excluding them from research. Almost nowhere in the massive bioethical literature on experimentation is there any reference to a right to be considered for a research protocol, or to a corresponding duty to avoid unjustly or irrationally excluding those who might wish to be subjects.12 Standard bioethical analysis short-circuits the discussion of equitable selection by asserting that there can be no injustice in depriving anyone of the opportunity to serve as a research subject, because receiving an intervention whose therapeutic value is uncertain is not a benefit. This is a good instance of the way in which feminist analysis can help to reframe an issue by "asking the woman question." 13 In evaluating the ethical standing of a practice, we must go beyond stated objectives and anticipated consequences to analyze the actual effects of the practice on real women and their interests. Moreover, we must determine those consequences not only for each individual woman but for women as a group. As Susan Sherwin puts it, "medical and other health care practices should be reviewed not just with regard to their

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effects on the patients who are directly involved but also with respect to the patterns of discrimination, exploitation, and dominance that surround them."14 So an inquiry into the ethics of current research practice ought to begin by ascertaining the impact of the exclusion of women from clinical research on their health and other interests, including their interest in maintaining the authority to make decisions for themselves and their children. The refusal to permit women to serve as subjects in clinical trials has hurt women in five significant ways. Two primarily affect the individual women excluded from consideration as subjects, and three affect all women, whether or not they are candidates for protocols.

Access to Drugs and Other Interventions The first way in which women are harmed by the barriers to their participation in clinical trials is their reduced access to genuinely new drugs and therapies not already licensed for any indication, which generally can be obtained only through protocols.15 Very sick patients, for whom there often is no "standard therapy" of proven efficacy available, may see a chance at an untested new drug as "the key to their survival." 16 Taking the gamble of trying the experimental intervention offers more hope than doing nothing. Moreover, research protocols are not approved and conducted on a mere hunch; the regulations protecting human subjects require that "[r]isks to subjects [must be] . . . reasonable in relation to anticipated benefits, if any, to subjects . . . ." 17 Many research protocols in fact reflect an expectation of therapeutic benefit to subjects. In addition, patients and physicians frequently are eager to try therapies that are licensed for one indication, to see whether they may have utility for another. Finally, trial subjects are provided with these therapies for free while nonsubjects may have to obtain them through alternative vehicles such as "treatment INDs" or on the market, often at enormous expense.18 Clearly these very sick patients would say that the opportunity to receive the intervention and its possibility of benefit is good, and that the chance to receive it free is even better. If for no other reason, participation in a trial can be a benefit. Yet the opportunity to become a research subject is a good that ought to be fairly distributed for other reasons: (1) for many individuals, including many women, the status of trial subject offers the best chance of access to good primary health care; and (2) for women as a class, one consequence of exclusion from the subject pool has been lesser-quality health care across the board. The first proposition may not be immutable; drastic reform of the American health care system might nullify this argument. The second one, however, will remain true even with marked reform in health care.


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Access to Quality Care Becoming a research subject can enable people to get health care comparable in quality to that of other Americans whose own resources or insurance permit them to see private physicians. Quality of care here means not only technical competence, but also reasonable convenience, cleanliness, and comfort of setting, as well as respectful, considerate treatment. These are features in short supply in the urban clinics, Medicaid mills, and emergency rooms that are often the only alternative for the third of Americans who are poor, uninsured, or both.19 Clinical researchers are highly likely to be first-rank physicians, careful and creative, with a panoply of study coordinators and other personnel to monitor and respond to patient-subject medical needs. Outside clinical trials, it is unlikely that poor women will find expensive blood work-ups, MRIs, and CT scans, and a multitude of other diagnostic or monitoring tests that are very difficult to extract from Medicaid or Medicaid-participating doctors. Even when a service is theoretically available from public agencies, it may nonetheless be effectively inaccessible for women without resources, transportation, or child care.20 If a research facility offers nothing more than a relatively predictable appointment and carfare, those may be critical factors. I do not mean to suggest that a holistic, attentive, considerate regimen is universally characteristic of protocol medicine. The fact is that exclusion from trials, whether or not the intervention on trial ultimately proves of value and whether or not a given individual is randomized to receive a placebo, can mean exclusion from higher-quality treatment.

Postmarketing "Experimentation" on Women Another way in which exclusion from clinical trials hurts women is the cumulative impact on women of the marketing of drugs and interventions tested only or largely in men. Drugs that have never been tested in women are routinely prescribed for and taken by them. All women, no matter what kind of health care they can pay for, suffer from the lack of knowledge about the effects of male-tested therapies in women and from the absence of basic research on primarily female health problems. Women are additionally disadvantaged by physicians' ignorance about the impact of most interventions on pregnant women, a different question from their impact on the fetuses.21 Researchers do not want fertile women in their trials for a variety of reasons, principally perhaps because of concern about potential liability to their offspring. Since all fertile -women are perceived as continually "at risk" for pregnancy, it seems logical to exclude all women but the absolutely infertile. That category, in turn, has been defined to

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comprise a small and skewed population: the surgically sterile, very young girls, and those women past menopause.22 The very young and the older woman are often then eliminated from consideration because age is another common exclusionary criterion. The drug ends up being tested in no women, or in such a small sample of women that it is highly unlikely the protocol will detect differential outcomes, whether in terms of therapeutic efficacy or side effects, unless they are of great magnitude. But when the drug is released to the general population, its users are not restricted to men, or to infertile women, or to women who are not pregnant. Women then face an unpleasant choice: either take the drug without reliable data on its operation in the female body (fertile, pregnant, or not), or do not take the drug and forego its possible amelioration of their medical problem. Many women, including pregnant women, do take these drugs, but no data is being collected about their experience, risks and adverse outcomes are not monitored, and the safety and efficacy of the drugs—for women—remain unclear.23

Second-Class Health Care for Women We are just beginning to realize the extent to which women receive second-class health care. The health problems of women are too often misdiagnosed as psychosomatic or unimportant, and physicians tend to use less aggressive diagnostic procedures and treatments for women.24 For example, cardiac disease is the leading killer of both men and women in this country, and has been since 1910. Every year, on average, 500,000 women and 475,000 men die from cardiac disease. The attack rate for postmenopausal women is as high as that for men, and women with acute myocardial infarction are more likely than men to be severely ill and to die soon thereafter.25 Yet men get better care for, and are more likely to recover from, heart attacks. "When a woman goes to see her doctor about chest pain, very often the physician will look for anxiety. For men, most doctors will try to rule out coronary artery disease."26 Several recent studies demonstrate that women are far less likely to be given angiograms and that men are twice as likely as women to receive balloon angioplasty and clot-dissolving drugs, although the latter therapies are considered equally effective for men and women.27 A 1987 study showed that cardiologists were ten times more likely to recommend men than women for follow-up procedures.28 Some of the explanation for this second-class health care is the failure to conduct research with women subjects.29 Since 1988, it has been established that taking an aspirin every other day reduces the risk of heart disease by over 40 percent for men over fifty. But the Physician's


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Health Study, the primary study in this area, examined the effects of aspirin only in 22,071 men—no women. Charles Hennekens, one of the investigators, said women were not included because the lower incidence of heart attacks in women over fifty would have required a much larger sample size. For five years, Dr. Hennekens tried without success to get NIH funding to replicate the study in women. He finally got the money in 1991.30 Numerous other examples of disparities in providing major diagnostic and therapeutic interventions, ranging from kidney dialysis and transplantation to diagnosis of lung cancer, have been documented in a report of the Council on Ethical and Judicial Affairs of the American Medical Association.31 The Council concluded that these disparities could not be accounted for by biological differences or other benign or neutral variables. It found that "medical treatments for women are based on a male model, regardless of the fact that women may react differently to treatments than men or that some diseases manifest themselves differently in women than in men. The results of medical research on men are generalized to women without sufficient evidence of applicability to women." 32 The Council went on to recommend that "[r]esearch on health problems that affect both sexes should include male and female subjects. Sound medical and scientific reasons should be required for excluding women from medical tests and studies, such as that the proposed research does not or would not affect the health of women."33 It is hardly surprising that the state of women's health care is comparatively undeveloped when one realizes that there has never been a center for gynecological research within the National Institutes of Health, and that less than 2 percent of NIH funds awarded for external projects has gone to departments of obstetrics and gynecology.34 Surely it is time for the research establishment to recognize that: The ramifications of excluding women from clinical trials and of incomplete data analysis are grave. . . . [A] subliminal message is sent to health care professionals that women's illnesses and needs are less serious than men's and that the treatment of males takes precedence over that of females. The dearth of data on how major diseases affect women in particular means that effective treatments and preventive measures perhaps are less than optimal and may be harmful to women.35

The Special Neglect of Pregnant Women If the health of women in general seems to be valued less than the health of men, the health of pregnant women, in particular, has been almost entirely neglected, lest research or treatment in any way compromise the embryo or fetus.

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The dilemma is familiar for all health care professionals who treat pregnant women. According to Evlin Kinney and coauthors, in 1981 a third of those drugs listed in the Physician's Desk Reference with precautions or contraindications had not been adequately studied to determine their safety (or, I might add, efficacy) for pregnant women.36 As Dr. Agneta Philipson, an infectious disease specialist, put it in describing bronchitis while pregnant, the physician has either to practice medicine as though there had been no advances in drug development in the last 30 years or so, or to possibly risk the well-being of the patient and fetus. The further risk—legal action for administering a drug not specifically approved for use in pregnancy— also exists.37

The pregnant woman with a relatively minor health problem often will choose to avoid even a benign remedy for fear of danger to her child. But we know that physicians prescribe, and pregnant women take, a large number of drugs.38 Yet we continue on the course decried almost two decades ago by pharmacology professor Bernard Mirkin: "Society may choose to forbid drug evaluation in pregnant women and children . . . [and] certainly reduce the risk of damaging individuals through research. However, this would maximize the possibility of random disaster resulting from use of inadequately investigated drugs."39

Perception of Women as "the Other" and "the Reproducer" A final harm to women because of their exclusion from research may be the most difficult to quantify. In many disciplines and areas of discourse, women are challenging the world view that begins with and proceeds from the male experience.40 Whenever women are treated as secondary or special because they are "different" from men, that treatment undermines the struggle against the male-identified structures so deeply embedded in our language, our culture, and the minutiae of our everyday lives.41 That struggle is not just about dignity or selfesteem—vital as those are—but about how long and how well women live in the world. From male violence against women to the priority male children enjoy with regard to food and education, continuing male dominance diminishes women's chances to survive. Women cannot afford to remain the afterthoughts in any field of endeavor, including biomedical research. Similarly, the image of woman as "the reproducer"—a being who is defined first and foremost by her capacity to bear children—persists and permeates public policy debate. This image, not always acknowl-


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edged, is at the root of the express justifications for excluding women from research. The biological fact of fertility and the social role of primary parent are ascribed to and overshadow the other attributes of all women. This does not happen with men. The basic problem is not that the capacity to become pregnant is unimportant to sexual identity, but that it should not be all important, or more important than any other aspect of our sexual selves. . . . When the "difference" of childbearing homogenizes females as mothers, women are denied their individuality: all women become the same—mothers— which immediately classifies them as "different" from men.42

The persistent concern of medical researchers with the possibility of pregnancy among their female subjects, coupled with inattention to the reproductive status, behaviors, and outcomes of their male subjects, are a transparent example of this dynamic. Exclusionary protocols and their degrading pregnancy-test requirements fortify this false and, for women, disabling stereotype.

The Rationales for Excluding Women Although pregnancy and harm to a potential fetus are the underlying concerns, the express objections to including women in biomedical studies are more complex:43 • Homogeneity of gender among research subjects is necessary to produce more usable data and more reliable information about effective therapies faster and cheaper, to the ultimate benefit of everyone, women as well as men. • Investigators and research sponsors have no real choice because governmental requirements dictate the exclusion of women. • Including women will subject research sponsors and investigators to a greater risk of financial liability. The additional cost, real or potential, of that risk would reduce funds available for research. • Regardless of the state of the law, some research sponsors and investigators believe that it is morally wrong to include women who are or may be pregnant in some clinical trials. It is unjust to require these individuals or institutions to conduct research in a manner contrary to their conscientious beliefs. I will address each of these arguments, before offering my proposal for a just and ethical policy concerning women as research subjects.

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The "Scientific" Explanation: Homogeneity of Subjects Is Necessary The gist of this assertion is that women, with their complicated body chemistry, ruin the elegant design of clinical research. In the revealing language of the Institute of Medicine of the National Academy of Sciences, "cyclical hormone changes that occur in women make them more difficult study subjects than men, in whom no such changes occur."44 Regardless of which gender ought to be characterized as the "more difficult" to study, it is now uncontroversial that drug metabolism, dose-response reaction, and many other significant markers of clinical effect are different in women than in men.45 Therefore, inclusion of a few women in a population of male subjects is thought to pollute the otherwise clean data that the study would generate.46 If the incidence of the condition to be studied is lower among women than among men,47 one hears complaints about the additional expense of the greater sample size required. One response to these justifications for excluding women from research is obvious. The purpose of clinical research is to generate knowledge that is of use in caring for sick people. Half of these people are women, and many of them are premenopausal women who do, in fact, have menstrual cycles. Not knowing how an intervention works in those people is a serious omission in the testing process. Not knowing what adverse effects those people may suffer is a troubling limitation on the generalizability of the data that the all-male (and usually European American)48 population of subjects has provided. When clinical research is conducted with governmental funds or under governmental auspices, as is overwhelmingly the case, testing safety and efficacy in only part of the population seems highly objectionable. A second response is almost equally obvious. If it is scientifically preferable to limit confounding variables by studying only one gender at a time, why should the gender of choice almost always be male? Without bias, one would expect to see roughly equal numbers of studies that include only women. Indeed in some subpopulations, such as the aged, women predominate. Thus in studying problems of the aged, one would expect to see more studies with only female subjects. A third fallacy of this argument is the assumption that gender is the overwhelmingly significant variable in a subject population. But the choice to focus on gender (or on age, or on race) is itself a value-laden decision that cannot be justified solely by invoking the unachievable grail of homogeneity. "Each person is physiologically unique—having a unique set of genes, unique life experiences, and unique combinations of previous infections and medical interventions. Thus each col-


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lection of people receiving the same treatment in a [randomized clinical trial] is heterogeneous."49 Human beings will never be as fungible research subjects as a specialized strain of laboratory rat.50 True, it may be easier to exclude women or women of childbearing potential than, say, subjects who are taking undisclosed concomitant medications, which would seem a far more serious contributor to data distortion. But to single out gender from all other possible conflating factors is arbitrary, and in the context of the serious deleterious effects on women's health of this exclusion, it is unjust. 51 Finally, "homogeneity" is relative, not an objective term of scientific art. Robert Levine has described how, as biomedical knowledge and epistemology become more sophisticated, "seemingly homogeneous categories tend to become heterogeneous." 52 Characteristics that were not salient and distinctions in health status that were previously not perceived become understood as relevant. For example, Levine compares the acceptability of doing a study on the general category "hypertension" forty years ago with the necessity today of differentiating not only essential hypertension from hypertension with a specific cause, but the further subcategories of mild, moderate, severe, and accelerated hypertension, each with or without renal and cardiac complications. Levine proposes that the first principle of equitable subject selection ought to be: "The subjects of research shall have those attributes that will permit adequate testing of the hypothesis. In most biomedical and in some behavioral research the attributes can (and should) be stated precisely in biological terms." 53 Testing can hardly be "adequate" when it excludes a substantial component of the population that will use the intervention. For too long, gender has substituted for more precise biological attributes to achieve an illusory "homogeneity" that serves certain research goals at the expense of others. From a woman's point of view, this model of research has not been more efficient. Efficiency requires definition of a desired endpoint and assessment of the extent of its achievement. For women, the desired endpoint of biomedical research—knowledge useable by and useful for the entire universe of people, including the pregnant and potentially pregnant woman— has not been achieved to any satisfactory degree.

The Superficial Explanation: Regulatory Restrictions Although regulations that were adopted only two decades ago cannot account for the long history of exclusion of women from research, some researchers now say that they would be willing to include women in their protocols, were it not for the federal regulations that seem to them (or their IRBs, or their institutions' lawyers) to prohibit or limit women's participation. 54

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These regulations have indeed posed an obstacle, as has finally been recognized by the Food and Drug Administration (FDA) with its recent amendment to its policies.55 But careful examination suggests that even in their previous form, the federal regulations were by no means an insurmountable hurdle. Elsewhere I lay out in detail the analysis that supports my conclusion that it is not federal regulations that are limiting researchers. The participation of women, and indeed of pregnant women, in clinical research is and has been permitted, if complicated, by the federal regulations. Had researchers truly wanted women in their protocols, they could have tested the regulations; the most problematic provisions probably would not survive scrutiny if challenged. 56 But there have been no challenges, which seems to demonstrate that the regulations are the product, not the cause, of a research tradition that has excluded women for quite other reasons.

The Fear of Litigation and Liability for Harm to Unconceived and Unborn Offspring This is not to say the law has nothing to do with the exclusion of women from research. Quite the contrary, the overwhelmingly most important reason for keeping women out of protocols is the fear of liability for harm to their unborn or as-yet-unconceived offspring. Clinical interventions, usually drugs, may pose risks because of their unknown gametotoxic, mutagenic, or teratogenic effects. If a child is conceived and is injured, and the injury can be causally linked to the intervention on trial, it is argued that the sponsor or investigator may be held legally accountable and financially responsible. Researchers seem not to realize that their male subjects also can transmit adverse effects to their offspring. There is no a priori reason to believe that male genetic material is more resistant to environmental or cytotoxic insult than female genetic material.57 In fact, the scientific literature has recently begun to explode on the subject, with findings in animals and humans of heart defects, cleft palates, neural damage and developmental delay, low birthweight, brain cancer, other tumors and childhood malignancies, lowered immunocompetence and thermoregulation, altered reproductive function, neuro- and retinoblastoma, and a host of anomalies all associated with paternal exposure, controlling for maternal exposure.58 Yet "largely because of the prevailing view that male-mediated effects are unlikely, . . . [I]ittle is known of the epidemiology and biology of potential male-mediated birth defects and this has hindered the development of a definitive model or mechanism."59 Because the basic research on such mechanisms and effects is still so new and fragmentary, 60 the causal connection between paternal exposure and harm to offspring may be substantially harder to establish in

Ethical Obstacles to Women in Biomedical Research 61

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court than a comparable link to maternal exposure. But the babies will be just as damaged. Even assuming that the etiology of a child's problem in a preconceptual paternal exposure never comes to light and the researcher is safe from legal risk, is that the important thing? I cannot believe that any researcher would deem it right to base the contours of exclusion criteria on such an unprincipled and opportunistic premise. How valid is the concern about liability based on maternal exposure? Lawyers are trained to predict the jurisprudential future by looking at what courts have done in the past. There has never been a successful claim by a subject's child against a researcher when the subject had been properly informed.62 In an area of law as undeveloped as this, it is not possible to foretell judicial responses with certainty, but there are substantial reasons to think that a proper warning of known and unknown risks, including the risk of chromosomal and/or teratogenic damage, will extinguish the strict liability claims of both subjects and their children for either prenatal or preconceptual harm. I have elsewhere engaged at some length in the legal analysis this question requires.63 One might characterize the relevant legal principle as knowing and voluntary waiver, or perhaps imputed assumption of risk, but it is more accurately described as one of superseding causation. If harm results to a subject's later-conceived or later-born child from a protocol with a reasonable risk-benefit ratio for its participants, the harm should be viewed as the result not of the researcher's conduct, but of the parent's choice to participate in the trial. I emphasize that the parent would have to be aware that there might be deleterious consequences to offspring. 64 Perhaps compensation might be sought from the parent,65 but the break in the causal chain should suffice to shield a researcher from financial responsibility. While it is not possible to demonstrate conclusively that liability for harm to the offspring of a female research subject could never be found, it can be demonstrated that researchers cannot avoid all legal risk anyway, and that the continued exclusion of women will actually exacerbate rather than reduce that risk. Even if researchers are able to continue excluding all pregnable women, unless they confine their subject populations to irreversibly sterilized men, they will have to grapple with the specter of preconception liability. As the causal connection between male exposure to gametotoxins and harm to offspring becomes increasingly well understood, paternal-exposure claims are not far off. If the informed consent and superseding causation analysis outlined above does not prevent liability for harm to the children of female subjects, it will not preclude liability to the children of male subjects.

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Moreover, as the concept of a "duty to test" evolves in the law,66 researchers are going to face a quite different risk of liability for the harm caused by their refusals to include pregnant and pregnable women in clinical trials. Women and their children injured by drugs and interventions that should have been formally investigated before marketing, rather than in the haphazard natural experiments of postmarketing, will seek compensation. Courts have found that FDA approval and compliance with FDA testing requirements, if inadequate, will not defeat these claims.67 Finally, as clinical trials are acknowledged to provide access to primary health care, public medical centers and research sponsors, at least, will be subject to claims of unconstitutional discrimination for their exclusion of women, including, quite possibly, pregnant women.68 To posit this scenario is not tantamount to declaring a "right" to participate in a particular protocol. Many valuable goods that are not positive rights guaranteed by the state nonetheless cannot legally be withheld, even by private actors, on the basis of discriminatory criteria. You may not be entitled to a job or a mortgage or health care, but that does not mean that you may be deprived of it because of your race or gender. Similarly, you may not be able to claim a right to participate in a given clinical trial, yet you may successfully contend that you should not lose your "opportunity to compete" for the slots in that trial because you are female.69 And pregnant? Potential or actual pregnancy is no more legitimate a classification for these purposes than gender itself. Congress, in the Pregnancy Discrimination Act, evidently agreed with this view.70 The fact is that whichever way they turn, researchers face potential liability unless governmental action is taken to relieve them of one or another of their current legal responsibilities. There is nothing unjust about this. The premise of our free society is that we may choose to engage in a broad range of nonprohibited activities so long as we are prepared to accept responsibility for the consequences of our choices. Sometimes that responsibility is predicated on our fault and is intended to deter us from certain choices; that is the theory of liability for negligence, which seeks to deter unreasonably careless or reckless actions. Sometimes the responsibility is not the result of fault, but a societal determination to hold people who engage in the conduct responsible for its real costs. It may be socially desirable and morally just to require them to absorb those costs and compensate the injured. That is the theory the law calls "strict" liability, or liability without fault. Although researchers may be held liable under either or both of these theories, the chances are remarkably low and, by definition, no higher than the chances of injury that they ask their subjects to incur. There is logic


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and justice in imposing on researchers that level of exposure to liability.

The Moral Duty to Protect the Fetus Some investigators say that their reluctance to include pregnable women in protocols stems not from their belief in the homogeneity principle, nor from fear of liability or federal regulators, but rather from their conviction that they have no right, and the woman has no right, to do anything that will endanger a fetus. They know that women may not realize that they are pregnant during the first, most crucial period of fetal formation, so that the issue cannot be avoided by taking women off protocol once they are known to be pregnant. In the researchers' view, the safe and moral course is to exclude the potentially pregnant, that is, most women. As the law stands now, researchers in health facilities or researchers funded in whole or in part by the Department of Health and Human Services (HHS) have a right to refuse to participate in activity that offends their morality. The National Research Act of 1974, which established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, provides that: No individual shall be required to perform or assist in the performance of any part of a health service program or research activity funded in whole or in part [by HHS] if his performance or assistance in the performance of such part of such program or activity would be contrary to his religious beliefs or moral convictions.71

This broad protection means that the refusal to engage in the research need not be based on religious belief or on consistent adherence to a religious praxis. It need not even be derived from an interpretation of the Hippocratic Oath or other public proclamation of medical ethics. Repugnance grounded in some judgment of right and wrong will suffice. The easy resolution, then, is for researchers who believe that it is morally wrong to enroll pregnable women to opt out of protocols that violate this precept. But the claim that women should not be permitted to participate in research because it is morally wrong to place their fetuses or potential fetuses at risk deserves, and requires, a more substantive response. This objection seems to underlie much of the current exclusion of women from research. Once it is understood that all it takes to restrict the subject pool is an assertion of moral belief, we may expect to see more researchers suddenly discover and articulate these moral convictions. (Right now, the widespread practice of excluding women any-

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way means that there is no real need for them to do so.) Finally, since I advocate below a policy that would forbid the wholesale exclusion of women from protocols, it would be disingenuous for me not to address the conscientious objectors. A. The Liberty, Autonomy, and Privacy of Pregnant Women The liberty, autonomy, and privacy of pregnant women militates in favor of allowing them, not others, to make choices about their participation in research. Often it is contended that what distinguishes the pregnant woman (for ease of reference, let us say this argument concerns only the already pregnant woman) from other responsible agents is that she cannot act without affecting the embryo or fetus she carries. But is that moral status really unique to the pregnant woman? Rarely can any human being act, or omit to act, without having some impact on the welfare of other human beings. We all continually make choices that not only affect those immediately around us, but have profound implications for the world our children and all future generations will inherit. From the food we eat to the cars we drive to the diapers we put on our babies, from our political action or nonaction to the jobs we take or refuse, in every moment we are shaping the range of possibilities available to others, especially those who will come after us. Morality consists, for some, primarily of trying to determine and assess the consequences of our conduct for others as well as for ourselves. Assuming for the moment that the fetus deserves the same protection and enjoys the same rights of any live person—a large assumption—the question is to what extent, under our law and mores, do we limit one person's scope of decision making and action for the benefit of another person? Do we require people, for example, to refrain from ingesting substances or undergoing medical procedures because of the negative consequences for specific other individuals? 72 Do we generally expect people to allow other individuals use of their bodies or body parts because those individuals would derive great benefit from such use? One rather vivid answer is that of a low-level state court confronted with the claim that a dying patient should be legally entitled to obtain a bone-marrow transplant from an unwilling but histocompatible relative, the only suitable donor: The common law has consistently held to a rule which provides that one human being is under no legal compulsion to give aid or take action to save another human being or to rescue. . . . Our society, contrary to many others, has as its first principle, the respect for the individual, and that society and government exist to protect the individual from being invaded and hurt by another. . . .


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. . . . For a society which respects the rights of one individual, to sink its teeth into the jugular vein or neck of one of its members and suck from it sustenance for another member, is revolting to our hard-wrought concepts of jurisprudence. Forceable extraction of living body tissue causes revulsion to the judicial mind. Such would raise the spectre of the swastika and the Inquisition, reminiscent of the horror this portends.73

To my knowledge, never have agents of the law compelled competent adults to utilize their bodies to help, or to avoid harm to, someone else—except, of late, pregnant women. Over their objections, pregnant women have been ordered to undergo surgery and to accept blood transfusions, 74 and have been placed or kept in detention facilities and prisons explicitly and solely because of concern about risk to the fetus. For resisting medical advice or using illegal substances during pregnancy, women have been prosecuted for reckless endangerment, for child abuse and neglect, and for delivery of drugs to minors.75 One woman was charged with child abuse and temporarily lost custody of her infant because of the valium that she took while pregnant to relieve pain from accidental injuries.76 These are not women who have been found incompetent77 or convicted of other independent offenses such as possession of a controlled substance. Medical and judicial authorities have decided that their liberty, bodily integrity, and privacy should be forfeited because of their pregnant status. The factors that can affect pregnancy outcome, cause fetal malformation, or substantially increase the risk of serious harm to a future child are myriad: alcohol, tobacco, and narcotics may be the most discussed, but over-the-counter cold remedies, laxatives, diet, and caffeine can also dramatically affect fetal development. 78 What about refraining from sexual activity, getting enough rest, and not working? Exposing yourself to infectious diseases, perhaps from your other children? Maybe women who may become pregnant should not be allowed to live at a high altitude, which can reduce the oxygen flow to the fetus, and they surely ought to be denied general anaesthesia or other drugs during labor and delivery, which may have the same effect. 79 Will the next step be, as George Annas has suggested, confining pregnant women to a maximum-security country club? 80 Pregnant women seem to be the only class of adults who are forced to conform their behavior to professional dictates in areas otherwise generally regarded as private, or face the strongest sanctions of the state. No man is required to donate an organ or undergo bodily invasion for the benefit of someone else, be it stranger or family member; we do not even require organ donation after people are dead. No one suggests that if a woman's obstetrician recommends no intercourse during pregnancy, her husband can be prosecuted for child abuse be-

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cause he cajoles or coerces her to have sex. No court has ordered a man to quit his job and stay home with older children so that his pregnant wife can get the rest she needs. 81 In this climate of legal compulsion of women, it is hard to focus exclusively on the moral question of what is owed a woman's embryo or fetus.82 Indeed, the question itself risks obscuring the central issue: Who is to decide? Why should it not be the woman herself?83 B. The Right and Competence of Women to Make Decisions That May Affect Their Potential Offspring We allow women (and men) wide discretion to make decisions affecting the welfare of their children as a matter of both law and morality. Yet as the Planning Panel of the Institute of Medicine notes in its Report on Issues in the Inclusion of Women in Clinical Trials, in research we embark on a quixotic quest for zero risk for fetuses. At the same time we express no concern about effects on existing, born children of their parents' participation or nonparticipation in research. Would we exclude a man from consideration for a protocol testing Haldol or Prozac, for example, because the unanticipated side effects of the drug might create a risk of his harming his child? Do researchers calculate whether the exclusion of a diabetic woman of childbearing capacity from a protocol that provides careful monitoring of blood sugar might reduce her life expectancy or her vision retention, and how that will affect her three young children's lives? No. The effort to achieve zero risk for fetuses seems limited to the research context. We generally permit pregnant women to determine themselves, without requiring consultation with their impregnators or anyone else, whether to undergo all sorts of diagnostic and treatment procedures with definite fetal risk, such as X-rays. 84 Precluding the right to decide whether to participate in a protocol while pregnable or pregnant is a grave imposition on a woman's autonomy. For the woman who truly needs to be in a clinical trial, it is more than that. It forces her to choose between bearing a child and meeting her own health needs. The right to bear children goes to the heart of what it is to be human. The value we place on individuals determines whether we see them as entitled to perpetuate themselves in their children. Denying someone the right to bear children—or punishing her for exercising that right—deprives her of a basic part of her humanity.85

In thinking about the would-be subject's right to make her own decision, I borrow from the thoughtful analysis of Carol Levine and Nancy Dubler, in their discussion of the reproductive freedom of HIVinfected women:


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Government and society, through the agency of public-health officials, physicians, and courts, have no moral right to intervene in this singular aspect of women's lives. . . . There is no intent to create harm; in fact, the intent is just the opposite. . . . There is no certainty that harm will in fact be done; the majority of babies born. . . . [are] not [harmed].86

The points that Levine and Dubler make about the decision of the HIVinfected mother are generally true in the research context as well: the woman has no intent to harm, and there is no certainty that harm will occur. The defenders of fetal welfare show little respect for and trust in women's decisions about their own children, born and unborn. Yet it is hard to find better decision makers than these women. The track record of our health care system and of our political and societal leaders with regard to the welfare of children, prenatal or postnatal, is hardly exemplary. If our society cared so deeply about children, we would set up a comprehensive program to prevent low-birthweight babies and offer treatment or support for all women at risk.87 If society's priority were to maximize avoidance of prenatal and preconception harm, the most efficient route would be to improve women's general quality of life, eliminate environmental toxins, and address the stressors and lack of prenatal care that are the most prevalent sources of such harm. 88 If we were serious about fetal and child welfare, our employment policies would provide paid pregnancy leave, family-illness leave, postpartum parental leave for both parents, work with more flexible schedules, and part-time jobs with health benefits. Prenatal care, well-baby care, and preventive screening and health care for children would be fully available and accessible: that would mean transportation, child care, and time off from jobs for parents to take children to the doctor. We would provide nutritional counselors and guarantee that all pregnant and lactating women, and children, had enough nourishing food. We would find homes for the 100,000 homeless children. We would fund Head Start for every eligible child and sufficient family-support, foster-care, respite, and homemaker programs to help the 2.5 million children currently suffering from abuse and neglect. We would, for heaven's sake, make sure that all children are vaccinated. 89 So long as those who run our society fail to pursue these proven strategies of risk reduction, it is unpersuasive for them to condemn a pregnant woman who risks causing her fetus some harm from her participation in research. In any given instance, it may well be that the intervention on trial, the improved access to medical care, or a nominal payment for enrollment in a protocol will redound to the net benefit of a woman's existing children or her child-to-be. Or it may not. Parents

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struggle to do what is best for their children in a society that lends them little basic support. Neither government bureaucrats nor private research sponsors like pharmaceutical companies are in a better position to compute the risk-benefit ratio for a particular woman and her particular children. There may be instances in which the woman makes the wrong moral choice. But there is no empirical reason to believe that others will make it better. To appropriate a woman's right to make that choice thus seems morally indefensible. As Deborah Mathieu observes, "a professed interest in the welfare of children may mask a more controversial attitude toward the place of women in society." 90

A Proposal for Full Participation in Research The eligibility criteria of all research protocols should include women at all phases of their lifespan (including those years that are defined as childbearing) on precisely the same terms and conditions that they include men. This means that the eligibility criteria should not differentiate by gender. Women should not be excluded because of the current phase of their menstrual cycle, or their use of oral contraceptives, estrogen replacement therapy, or other hormonal products, unless the same care is taken to ensure the hormonal homogeneity of the male subjects. If women are to be excluded or terminated from a study because of pregnancy, then there must be some mechanism for ensuring that male participants are not engaging in any potentially reproductive behavior. Even when studying health conditions that to date have been identified only in men, there is no need to explicitly exclude women. We may anticipate that no women will enroll in such protocols, but in the remote event that current science is wrong, and a woman appears with the relevant condition, her gender should not exclude her.91 In this as in other areas of invidious discrimination, the first task is to eliminate the discriminatory rules. In another paper I have detailed the federal regulations that still require amendment and outlined legislative and other strategies to accomplish this objective.92 But in keeping with the feminist analysis that looks beyond formal equality (the elimination of gender-biased rules) to substantive equality (achieving equality of outcomes), it is important to emphasize that the ultimate ethical goal requires more than facial nondiscrimination. Female subjects ought to appear in each protocol in proportion to their number in the relevant population. This may require attention to the particular needs of women. Research sponsors and investigators may have to provide child care and other services, for example, if necessary to achieve this goal. Beyond a policy of nondiscrimination with respect to individual research subjects, affirmative action must begin to redress the lack of


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biomedical knowledge useful for women. In the words of Leslie Wolfe, Executive Director of the Center for Women's Policy Studies, "research must study women in their own right, and on their own biological terms, not as if they were defective men." 93 Research on the etiology and risk factors for disease in women is desperately needed. In a spirit of reparation, such studies ought to receive priority in funding and other resources. Indeed, all research should be evaluated to determine whether its design will elucidate gender-specific differences and permit analysis of gender-specific variables.94 This requirement cannot be limited to areas in which there is already some expectation of genderrelated difference; the absence of such an expectation may reflect only a lack of adequate prior research.95 At a minimum, pharmacokinetic screens of all new drugs should be conducted in women and men, and animal studies should include female as well as male animals. Moreover, reproductive studies must be conducted in animals prior to clinical studies in human subjects, and those studies should investigate adverse reproductive outcomes mediated through male and female parents.96 Some of the positions that I advocate are gaining acceptance. The NIH/ADAMHA Policy Concerning Inclusion of Women in Study Populations ("NIH Policy") appears to establish that the composition of the study population must be considered when determining the scientific merit of research proposed to the National Institutes of Health.97 The appointments of Dr. Antonia Novello and subsequently Dr. Jocelyn Elders as Surgeons General and of Dr. Bernadine Healy as Director of the National Institutes of Health, and the creation of the NIH Office of Research on Women's Health, may have been early harbingers of a new era of attention to the health needs of women and their inclusion in biomedical research. With the 1993 advent of a new administration in Washington, we saw prompt passage of the NIH Revitalization Act, which essentially codifies the NIH Policy and allocates substantial new funds to research on women's health problems. And in July 1993 the FDA issued the proposed Guidelines for Study of Gender Differences, which lowered some of the regulatory barriers to the inclusion of women of childbearing potential in early clinical studies, although mandating absolutely nothing. I am far from sanguine about the utility and significance of these initiatives. Aside from the nonenforcement problem documented in the recent Government Accounting Office study of the implementation of the NIH Policy, exceptions and loopholes riddle not only that policy but the new federal legislation and proposed FDA guidelines. 98 Even assuming more consistent enforcement, they may well accomplish little of substance. I suspect that the only real hope for progress on this issue lies neither in legislation, nor in litigation, nor in other govern-

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ment interventions that have been proposed (such as that perennial favorite for medico-legal problems, a no-fault compensation scheme that would immunize researchers from liability).99 A better approach, I believe, to overcoming the obstacles to women's full participation in biomedical research is striving to create a new ethic for researchers. We need values meaningful to researchers themselves, not just compelled compliance with rules and norms. Leaders, educators, and mentors—the powerful and successful of the research establishment—must exert their influence. Ethical discourse must communicate that continuing to view women as pregnant or pregnable reproducers, and men as the research subjects of choice, is illogical, unscientific, and unacceptable. Bioethicists at institutions such as The Hastings Center and the Kennedy Institute, and scholars who study, teach, and consult in the world of academic medicine, can play an important role. Government agencies such as the Office for Protection from Research Risks and the Office of Research on Women's Health can sponsor symposia and distribute educational material. Institutional Review Board members, with their regulatory mandate to ensure the equitable selection of subjects, are in an ideal position to engage researchers in constructive dialogue about the scientific or other assumptions underlying exclusionary criteria. What is vital is that it become clear to scientists and investigators that exclusionary research will no longer be rewarded by grants, prestige, or otherwise.100

Conclusion The exclusion of women from clinical research is wrong: neither good science nor good ethics. The oft-cited ethical justifications for the practice do not hold up under the scrutiny of feminist analysis; they are revealed as classic examples of the dynamic by which women are viewed as the less important "subgroup" whose health needs are secondary to men's.101 Whenever research is designed, conducted, or funded, we must ask "the woman question:" How do these decisions affect the interests of women? Do they burden and benefit women and men equally and fairly? Researchers must learn to envision women, pregnant and pregnable, as "normal" primary subjects of clinical research. They must also learn to honor women's autonomy and trust their fully informed judgments.

Notes This work was supported in part by funding from the Office for Protection from Research Risks (OPRR), National Institutes of Health, Public Health Service, U.S. Department of Health and Human Services, but the OPRR bears no responsibility for its completeness or accuracy, or for the ideas or conclusions


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it contains. Likewise, I appreciate the comments of Rebecca Dresser, Carol Levine, and Ruth Faden on earlier versions, and the heroic labor of editor Susan Wolf on the final draft, but all errors and extravagances are entirely mine. This chapter is gratefully dedicated to the memory of the woman who taught me more than anyone about overcoming obstacles: my mother, Suzanne Carhart Merton, 1911-1992. 1. Bernadine Healy, "The Yentl Syndrome," New England Journal of Medicine 325 (1991): 274-76, 274. 2. The first and in many ways still the best documentation and discussion of the exclusion of women from protocols is Evlin L. Kinney et al., "Underrepresentation of Women in New Drug Trials," Annals of Internal Medicine 95 (1981): 495-99. See also Special Report of the Board of Health Sciences Policy, Institute of Medicine, National Academy of Sciences, synopsized in J. Claude Bennett, "Inclusion of Women in Clinical Trials—Policies for Population Subgroups [sic]," New England Journal of Medicine 329 (1993): 288-92, 288; Food and Drug Administration, Notice of Proposed Guidelines for the Study and Evaluation of Gender Differences in the Clinical Evaluation of Drugs [hereinafter "Proposed FDA Guidelines for Study of Gender Differences"], 58 Federal Register 39,406 (July 22, 1993), at 39,406 (noting "little or no participation of women in many . . . studies; little study of the effects of such aspects of female physiology as the menstrual cycle and menopause, or of the effects of drugs widely used in women ... on drug action and pharmacokinetics"); Sheryl Stark Sherman, "Gender, Health, and Responsible Research," Clinics in Geriatric Medicine 9 (1993): 261-69; Douglas L. Schmucker and Elliot S. Vesell, "Underrepresentation of Women in Clinical Drug Trials," Clinical Pharmacology and Therapeutics 54 (1993): 11-15; Margrit Eichler, Anna Lisa Relsman, and Elaine Manace Borins, "Gender Bias in Medical Research," Women and Therapy 12 (1992): 61-70. As the then-U. S. Surgeon General Antonia Novello, put it: "Almost everything we know about health has been learned by studying men." Dana Baurac, "Bad Medicine: Health-care Groups Urge Remedy for Inequities," Chicago Tribune, December 8, 1991, p. 12. Even the American Medical Association has acknowledged "the gender gap" in health care and begun steps to rectify it with the unveiling of its Women's Health Campaign. Ilene Barth, "A Real-Life Medical Mystery: Women," Newsday, June 3, 1991, p. 68. 3. Because of their continuing primary responsibility for home and family, and lower status within the family economy, it is much more difficult for women to participate in clinical trials even when they are not formally excluded. The home-based caregiver does not have designated and predictable free time, and the woman working outside the home must use those precious hours for essential tasks and errands. Women also tend to subordinate their own health needs to those of children, spouses, and elderly or disabled parents. Almost no clinical trials are designed and conducted with all of these realities in mind. 4. See note 2 supra. See also U.S. General Accounting Office, Pub. No. GAO/ HRD-93-17, Women's Health: FDA Needs to Ensure More Study of Gender Differences in Prescription Drug Testing (Oct. 1992); U.S. Department of Health and Human Services, Pub. No. (PHS) 88-50206, Report of the Public Health Service Task Force on Women's Health Issues, Vol. II (Oct. 1985); Mark V. Nadel, GAO Pub. No. T-HRD-90-38, National Institutes of Health: Problems in Implementing Policy on Women in Study Populations (Testimony before the House Subcommittee

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on Health and the Environment, 101 Cong., 2d Sess. (June 18, 1990)); and Society for the Advancement of Women's Health Research, Toward a Women's Health Research Agenda: Findings of the Scientific Advisory Committee (1991). For a literature review finding "frequent systematic exclusion of females" in both human and animal studies, see Martha L. Elks, "The Right to Participate in Research Studies," Journal of Laboratory and Clinical Medicine 122 (1993): 130-36, 133. See also Karen Williams and Elaine F. Manace Borins, "Gender Bias in a Peer-reviewed Medical Journal," Journal of the American Medical Women's Association 48 (1993): 160-62. As Sue Rosser has noted, the singular exception is research directly related to men's interest in controlling production of children. Contraceptive research may permit men to have sexual pleasure without the production of children; research on infertility, pregnancy and childbirth has allowed men to assert more control over the production of more perfect children and over an aspect of women's lives over which they previously held less power.

Susan V. Rosser, "Re-visioning Clinical Research: Gender and the Ethics of Experimental Design," Hypatia 4 (Summer 1989): 125-39, 128. Susan Sherwin points out that research on women, as on other subordinated groups, seems aimed at establishing differences—"usually, inferiorities"—between women and men, rather than at meeting women's health needs. Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992), 167. 5. See Vanessa Merton, "The Exclusion of Pregnant, Pregnable, and OncePregnable People (a.k.a. Women) from Biomedical Research," American Journal of Law & Medicine 19 (1993): 369-451. 6. For an excellent discussion of how biomedical researchers define "the white male as the normal, representative human being," see Rebecca Dresser, "Wanted: Single, White Male for Medical Research," Hastings Center Report 22 (Jan.-Feb. 1992): 24-29, 28. 7. Only men were included in the first twenty years of the Baltimore Longitudinal Study of Aging, the largest study ever supported by the National Institute on Aging. The last major report from the study, published in 1984, of course contained no data on women. The report is entitled "Normal Human Aging." Testimony of Rep. Patricia Schroeder, Subcommittee on Health and the Environment, Hearings on National Institutes of Health (NIH) Reauthorization, 101 Cong., 2d Sess. (June 18, 1990). See also Healy, "The Yentl Syndrome" ("decades of sex-exclusive research have reinforced myth that coronary artery disease is a uniquely male affliction and have generated data sets in which men are the normative standard"). 8. It is important to recognize that the context of this inquiry is the gender of those conducting and funding clinical research, and their preoccupation, not always conscious, with medical problems that seem most salient to them. "You fund what you fear. When you have a male-dominated group of researchers, they are more worried about prostate cancer than breast cancer." Ellen Goodman, "They Fund What They Fear," Boston Globe, June 21, 1990, p. 15. On the absence of women from the decision-making ranks of academic medicine and biomedical research, see Bernadine Healy, "Women in Science: from Panes to Ceiling," Science 255 (1992): 1333; Floyd E. Bloom and Mark A. Randolph, eds., Funding Health Sciences Research: A Strategy to Restore Balance (Washington, DC: National Academy Press, 1990), v, 123.


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9. See 45 C.F.R. §46.111(3)(1974; as amended 1991); 21 C.F.R. §56.111(3) (1981; as amended 1991). 10. The original "codes" of research ethics make no mention of this concept. The only mention of subject selection in these basic texts focuses on informed consent and the freedom to decline to serve as a subject rather than on any right to be considered for a protocol. See, for example, The Nuremberg Code, rule 1, and World Medical Association, Declaration of Helsinki: Recommendations Guiding Medical Doctors in Biomedical Research Involving Human Subjects (1964, rev. 1975), sec. III, rule 3b, both reprinted in Robert J. Levine, Ethics and Regulation of Clinical Research, 2d ed. (New Haven, CT: Yale University Press, 1988), 425-29. 11. See Allan Brandt, No Magic Bullet: A Social History of Venereal Disease in the U.S. Since 1880 (New York, NY: Oxford University Press, 1985); Levine, Ethics and Regulation of Clinical Research, 69-86. 12. But see Robert J. Levine, "Appropriate Guidelines for the Selection of Human Subjects for Participation in Biomedical and Behavioral Research," in The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Department of Health, Education and Welfare, Pub. No. (OS) 78-0013, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, DC: U.S. Government Printing Office, 1978) [hereinafter The Belmont Report], Appendix I, 4-1 to 4-103; and Robert J. Levine and Karen Lebacqz, "Ethical Considerations in Clinical Trials," Clinical Pharmacology and Therapeutics 25 (1979): 728-41, for early suggestions that "the subject ordinarily chooses to receive an 'innovative therapy' because of the good (benefit) he or she expects to derive." Ibid., 732. Levine has been virtually the only bioethicist to address the issue from this perspective, although the discussion in his definitive text stops short of directly stating that equitable selection of subjects might entail a right not to be categorically excluded from eligibility for a trial. See Levine, Ethics and Regulation of Clinical Research, 89-90. But Levine does challenge the conventional dichotomy of trial and treatment, and speaks to the benefits as well as the burdens of being a research subject. See Levine, "The Role of Assessment of Risk Benefit Criteria in the Determination of the Appropriateness of Research Involving Human Subjects," in The Belmont Report, Appendix I, 2-1 to 2-59. He discusses the benefit of being on a special research ward, the likelihood of noticing the adverse effects of a drug on trial earlier than if it is administered outside a protocol, and other "direct health benefits" of participation in research, and then says, "[T]hus, it is often found that patients in a research environment seem to do better than patients receiving the same intervention in a practice environment. The probable explanation of this phenomenon is that subjects respond to the enthusiasm and optimism of the personnel found in the research environment." Ibid., 2-39 (footnote omitted). 13. See, for example, Elizabeth Fee, "Women and Health Care: A Comparison of Theories," in Vicente Navarro, ed., Health and Medical Care in the U.S.: A Critical Analysis (Farmingdale, NY: Baywood Publishing Company, 1977), 115-32, 116. 14. Sherwin, No Longer Patient, 5. 15. I include here under the rubric of "protocol" the recognized but rarely invoked "compassionate use" exception to the Food and Drug Administration's ban on dispensation of unapproved drugs. The wealthy, of course, also have the option of foreign sources for therapies available outside the United States but not yet approved here.

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16. Mireya Navarro, "Into the Unknown: AIDS Patients Test Drugs," New York Times, February 29, 1992, p. 1; Barbara Brotman, "Any Volunteers? Being A Human Guinea Pig Has Its Risks and Its Rewards," Chicago Tribune, May 19, 1992, p. Cl. See also Clyde Farnsworth, "Doctor Says He Falsified Cancer Data to Help Patients," New York Times, April 1, 1994, p. A16, describing the case of prominent oncologist Roger Polsson, who falsified data about his patients so that they would meet the entrance criteria of a major clinical trial and so qualify for "advanced medical treatment." 17. See 45 C.F.R. §46.111(2)(1974; as amended 1991); 21 C.F.R. §56.111(2) (1981; as amended 1991). 18. Treatment INDs ("Investigational New Drugs"), parallel track, and expanded access are all new regulatory categories that were intended to increase the availability of unapproved agents during their clinical testing, prior to FDA approval. Under certain circumstances, the FDA permits pharmaceutical companies to charge for drugs distributed in this fashion. See generally Robert J. Levine, "FDA's New Rule on Treatment Use and Sale of Investigational Drugs," IRB: A Review of Human Subjects Research 9 (July/Aug. 1987): 1-4. Drugs already licensed for one use, when they are prescribed for another, nonapproved use, may be considered just like other "experimental" therapies; coverage and reimbursement for their cost may be denied or resisted by private insurers and public programs such as Medicaid and Medicare. 19. For a horrifying description of typical conditions in "Medicaid mills," see Michael Specter, "Medicaid's Malady: New York Poor Relegated to Storefront 'Mills'," Washington Post, July 8, 1991, p. Al. In the words of a state regulator, "You can't call what goes on in those places medicine. It's a continuous obscenity. It isn't just that we treat poor people worse than animals. It's that the incentives are all designed to give the biggest rewards to the biggest criminals. No real doctor would spend a day there." Ibid. 20. The low-income woman has basic primary and preventive health needs for herself and her family. She must address these needs using a male-dominated, affluent health care delivery system oriented toward tertiary care. At each step of the way the woman is faced with complex responsibilities and encounters multiple barriers, while being responsible for maintaining wellness and preventing illness for her family under socioeconomic conditions that promote mental and physical illness. . . . She must learn how the health care system is organized, where to seek appropriate care, and how to linguistically and culturally translate their concerns into information that will be meaningful to health care professionals. . . . [P]oor and racial/ethnic women are most likely to be heads of households, to have larger families, to bear the heaviest burden of caring for the health and well-being of all family members, to be in the poorest health themselves, to experience the greatest psychologically induced symptoms or illnesses, and to be at highest medical risk, particularly during pregnancy and childbirth. Ruth Zambrana, "A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understanding Their Health Needs," in Cesar Perales and Lauren Young, eds., Too Little, Too Late: Dealing with The Health Needs of Women in Poverty (New York, NY: Harrington Park Press, 1988), 137-60, 148. 21. See Levine, "Appropriate Guidelines," 4-65, 4-66. 22. See, for example, the definition in the 1977 Food and Drug Administration guidelines for clinical researchers: "A woman of childbearing potential is defined as a premenopausal female capable of becoming pregnant. This includes women on oral, injectable, or mechanical contraception; women who are single; women whose husbands have been vasectomized or whose hus-


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bands have received or are utilizing mechanical contraceptive devices." Food and Drug Administration, FDA Pub. No. 77-3040, General Considerations for the Clinical Evaluation of Drugs (Washington, DC: U.S. Government Printing Office, 1977), 15. The FDA proposes to modify the application of this definition in its Proposed Guidelines for Study of Gender Differences, at 39,408. While this is a salutary development as far as it goes, it does not go very far. See discussion below. 23. As I discuss below, because of researchers' studied ignorance about the occurrence of male-mediated reproductive toxicity, men also generally must take a drug with no idea of its potential impact on their offspring. However, at least they have the benefit of some solid information about the drug's likely effects on their own health. 24. One study that carefully controlled for other variables found a highly significant association (p = .002) between gender and extent of physicians' work-ups (history, physical examination, and laboratory procedures) in response to identical presenting complaints. Men received more extensive workups for all complaints studied: back pain, headache, dizziness, chest pain, and fatigue. Karen Armitage, Lawrence J. Schneiderman, and Robert A. Bass, "Response of Physicians to Medical Complaints in Men and Women," Journal of the American Medical Association 241 (1979): 2186-87. 25. Nicholas H. Fiebach, Catherine M. Viscoli, and Ralph I. Horwitz, "Differences Between Women and Men in Survival After Myocardial Infarction: Biology or Methodology?" Journal of the American Medical Association 263 (1990): 1092-96, 1094. 26. Nancy Dickey, M.D., former trustee of the American Medical Association, quoted in Delthia Ricks, "AMA's Diagnosis: Women Maltreated," Orlando Sentinel Tribune, December 5, 1990, p. Al. 27. Richard Steingart et al., "Sex Differences in the Management of Coronary Artery Disease," New England Journal of Medicine 325 (1991): 226-30; John Z. Ayanian and Arnold M. Epstein, "Differences in the Use of Procedures Between Women and Men Hospitalized for Coronary Heart Disease," New England Journal of Medicine 325 (1991): 221-25. See also Lawrence Altman, "Study Finds Heart Treatment Differs for Men and Women," New York Times, November 13, 1991, p. 18; Jason Scott, "Fewer Women Get New Heart Attack Treatment: Study Confirms a Previous Report, Raising Concerns that There May be Bias in Medical Treatment," Los Angeles Times, November 13, 1991, p. A3 (reporting on presentations at the annual meeting of the American Heart Association). Eugene Braunwald, a leading cardiologist, reported to a forum on women's health on a reanalysis by gender of the results of past studies. Even when women do get identical, extensive, and timely care, they fare far worse than men in terms both of mortality and of subsequent heart attacks. Judy Foreman, "Women Trailing Men in Heart Attack Survival," Boston Globe, June 30, 1992, p. 1. 28. Interview in "Medicine's Built-in Sex Bias Robs Women of Quality Care," Business Wire Inc., August 24, 1990. See Jonathan N. Tobin et al., "Sex Bias in Considering Coronary Bypass Surgery," Annals of Internal Medicine 107 (1987): 19-25. In the United Kingdom, an analysis of 23,707 patients with coronary heart disease found heart specialists were far less likely to offer surgery to female patients, whatever their age and level of disability. Celia Hall, "Women Face Bias Over Operations," The Independent, April 30, 1993, p. 6. 29. Nanette K. Wenger, Leon Speroff, and Barbara Packard, "Cardiovascular Health and Disease in Women," New England Journal of Medicine 329 (1993): 247-56, 247 ("We have insufficient information about preventive strategies, di-

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agnostic testing, responses to medical and surgical therapies, and other aspects of cardiovascular illness in women."). See also Paul Cotton, "Examples Abound of Gaps in Medical Knowledge Because of Groups Excluded from Scientific Study," Journal of the American Medical Association 263 (1990): 1051-55, 1051, 1055; Marguerite Holloway and Philip Yam, "Reflecting Differences: Health Care Begins to Address Needs of Women and Minorities," Scientific American 266 (1992): 13. 30. Gina Kolata, "In Medical Research, Equal Opportunity Doesn't Always Apply," New York Times, March 10, 1991, p. E16. 31. Council on Ethical and Judicial Affairs, "Gender Disparities in Clinical Decision Making," Journal of the American Medical Association 266 (1991): 559-62. 32. Ibid., 559. 33. Ibid., 562. 34. Alix Boyle, "Women Gain in Medical Research," New York Times, April 26, 1992, p. 14. In June 1993, the NIH Revitalization Bill (Public Law 103-43), which I discuss in more detail below, was enacted. Section 1011 directs the NIH to establish an intramural laboratory and clinical research program in obstetrics and gynecology. No time frame is specified. 35. Testimony of Eleanor Smeal, President, Feminist Majority Foundation, before the Task Force on Opportunities for Research on Women's Health (June 12, 1991). 36. Evlin L. Kinney et al., "Underrepresentation of Women in New Drug Trials," Annals of Internal Medicine 95 (1981): 495-99, 496. From the context, it seems that what the authors of this study mean by "safety during pregnancy" is teratogenicity to the fetus or other adverse reproductive effect. It is interesting to note how rarely, when we speak of what is safe or healthful for a pregnant woman, we actually mean for the woman, herself; usually, we are referring to the safety or health of the fetus. 37. Leon D. Sabath, Agneta Philipson, and David Charles, "Ethics and the Use of Drugs During Pregnancy," Science 202 (1978): 540-41, 540. Dr. Philipson explains how she measured the blood level of ampicillin prescribed for her bronchitis because it was not producing the desired therapeutic effect, and found it much lower than the predicted level for that dose. After she was no longer pregnant, she took an identical dose of the drug, and that produced the "normal" level. What is most interesting about Dr. Philipson's account is the description of what occurred when she and other colleagues, inspired by this autoexperiment, conducted a small study of the absorption of erythromycin and clindamycin in pregnant women who were planning elective abortions. They measured the levels of drug in the recovered fetal tissue. After publishing the results, they were indicted under an 1814 Massachusetts grave-robbing statute. It took four years to get the charge dismissed. While some important senior clinical investigators protested, many other researchers of reputation refused to become involved, expressing fear "reminiscent of ... the McCarthy era." Ibid., 541. 38. See studies cited in Carol Levine, "Women and HIV/AIDS Research," Evaluation Review 14 (1990): 447-63, 457. 39. Bernard L. Mirkin, "Drug Therapy and the Developing Human: Who Cares?" Clinical Research 23 (1975): 106-13, 110. See also Bernard L. Mirkin, "Impact of Public Policy on the Development of Drugs for Pregnant Women and Children," Clinical Research 23 (1975): 233-37. 40. Among the literature of this genre, I have found particularly useful Zil-


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lah R. Eisenstein, The Female Body and the Law (Berkeley, CA: University of California Press, 1988): Women are permitted to compete with men under the same rules and within the same institutions, but those institutions were designed in accordance with normative male values, priorities, and characteristics. Requirements and standards are designed with men in mind. . . . The engendered nature of law privileges man as the referent by making woman "the" different "other" and thereby it homogenizes the differences among women. . . . . . . . This male view assumes a series of starting points that really aren't starting points at all but rather points within an engendered discourse.

Ibid., 54, 55, 63 (citations omitted). 41. I do not subscribe to the "pure equality" model so roundly and properly criticized by contemporary feminist theorists. See, for example, Sylvia Law, "Rethinking Sex and the Constitution," University of Pennsylvania Law Review 132 (1984): 955-1040, 1007-13; Wendy Williams, "Equality's Riddle: Pregnancy and the Equal Treatment/Special Treatment Debate," New York University Review of Law and Social Change 13 (1984-85): 325-80. Nor would I suggest that different treatment can never be advantageous to women or that the concrete advantages of different treatment can never outweigh its costs. But the costs must be recognized. A good example is the exclusion of women soldiers from combat, which is not the unmitigated advantage that it might seem. See Kathy L. Snyder, Note, "An Equal Right to Fight," West Virginia Law Review 93 (199091): 421-54; Jill L. Goodman, "Women, War and Equality: An Examination of Sex Discrimination in the Military," Women's Rights Law Reporter 5 (1979): 24369. 42. Eisenstein, The Female Body and the Law, 89-90. 43. These contentions are congruent with those identified by a planning panel of the Institute of Medicine convened at the request of two NIH sections. See Report of the Planning Panel of the Institute of Medicine Division of Health Sciences Policy, Issues in the Inclusion of Women in Clinical Trials (Washington, DC: National Academy of Sciences, 1991), 4 (on file with the author). 44. Ibid, (emphasis added). No authority is cited for the rather broad and questionable statement that male hormonal cycles do not exist. 45. See Jean Hamilton and Barbara Parry, "Sex-related Differences in Clinical Drug Response: Implications for Women's Health," Journal of American Medical Women's Association 38 (1983): 126-32; Allen Raskin, "Age-Sex Differences in Response to Antidepressant Drugs," Journal of Nervous and Mental Diseases 159 (1974): 120-30; and other references collected in notes 16-29 of Ruth B. Merkatz et al., "Women in Clinical Trials of New Drugs: A Change in Food and Drug Administration Policy," New England Journal of Medicine 329 (1993): 292-96. 46. If the reader thinks she detects in my vocabulary an allusion to the female "uncleanliness" that has produced rituals in so many cultures, she is correct. 47. Or is thought to be; we are now learning that the diagnosis and reporting of health problems in women are substantially less accurate than in men. 48. Racial and ethnic exclusions from protocols are as serious an omission— although rarely as explicit—as the exclusion of women. Craig K. Svensson,

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"Representation of American Blacks in Clinical Trials of New Drugs," Journal of the American Medical Association 261 (1989): 263-65. While not the primary focus of this paper, much of what I describe and propose here applies to this parallel problem, including the consequences for the health of people of color. See Council on Ethical and Judicial Affairs, "Black-White Disparities in Health Care," Journal of the American Medical Association 263 (1990): 2344-46; Mark B. Wenneker and Arnold M. Epstein, "Racial Inequalities in the Use of Procedures for Patients with Ischemic Heart Disease in Massachusetts," Journal of the American Medical Association 261 (1989): 253-57; Carl M. Kjellstrand, "Age, Sex, and Race Inequality in Renal Transplantation," Annals of Internal Medicine 148 (1988): 1305-09. 49. Helen Bequaert Holmes, "Can Clinical Research Be Both Ethical and Scientific?" Hypatia 4 (Summer 1989): 156-68, 159. See also Institute of Medicine, Expanding Access to Investigational Therapies for HIV Infection and AIDS (Washington, DC: National Academy Press, 1991), 36 (more scientists are questioning the relevance of research in highly selected subgroups, as HIV-infected people live longer and develop more diverse clinical histories). 50. Even rats may not be all that fungible—recall Robert Levine's wonderful story about his experience as a fledgling NIH investigator, when he thought he had been party to research fraud before discovering that his inability to replicate at Yale the results he had obtained at NIH was due to his using rats from a different colony, albeit the same strain. Levine, Ethics and Regulation of Clinical Research, 33. 51. On the definition of "justice" in the research setting as including maximizing benefit to the currently least well-off group, see Robert Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington, IN: Indiana University Press, 1987), 132. 52. Levine, "Appropriate Guidelines," 4-4. 53. Ibid., 4-3 (emphasis added). 54. I should note that these regulations technically apply only to certain classes of clinical research, albeit the central ones. The Food and Drug Administration (FDA) regulations govern research intended to obtain approval for commercial distribution of a new drug or device (or of an approved drug or device for a new indication), and the Department of Health and Human Services (HHS) regulations about research with pregnant women apply only to research conducted or supported in whole or in part with its funds. As a practical matter, however, most privately funded institutions and researchers operate according to these rules. The basic HHS regulations (Subpart A, the "Basic HHS Policy for Protection of Human Research Subjects") were replaced in 1991 by a new Federal Policy for the Protection of Human Subjects (56 Fed. Reg. 28,002 (June 18, 1991)). This new policy, adopted as a common rule by sixteen federal agencies and departments, applies not only to research funded by, but also subject to regulation from, any of these agencies and departments. Subpart B, however, which includes the regulations with regard to pregnant women, was not changed. See Joan Porter, "The Federal Policy for the Protection of Human Subjects," IRB: A Review of Human Subjects Research 13 (Sept.-Oct. 1991): 8-9, 8. 55. See Proposed FDA Guidelines for Study of Gender Differences, and discussion below. On the precise scope of needed amendments of the federal regulations, see Merton, "Exclusion of Women." 56. For an analysis of the legal vulnerability of these provisions, see Merton, "Exclusion of Women."


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57. See Nicholas A. Ashford and Charles C. Caldart, "The Control of Reproductive Hazards in the Workplace," Industrial Relations Law Journal 5 (1983): 523-63, 546, citing report of the Council on Environmental Quality. 58. See, for example, Gladys Fiedler, "Developmental Toxicology: MaleMediated Effects," in Maureen Paul, ed., Occupational and Environmental Reproductive Hazards (Baltimore, MD: Williams & Wilkins, 1993), 52-59. 59. Andrew F. Olshan and Patricia A. Baird, "Paternal Occupation and Congenital Anomalies in Offspring," American Journal of Industrial Medicine 20 (1991): 447-75, 448 (citations omitted). A recent study suggests a possible mechanism for preimplantation embryopathy, finds methadone in semen, and describes the effects of paternal alcohol consumption on offspring. See Ricardo A. Yazigi, Randall R. Odern, and Kenneth L. Polakoski, "Demonstration of Specific Binding of Cocaine to Human Spermatozoa," Journal of the American Medical Association 266 (1991): 1956-59. Cell division is a prime occasion for mutation, and sperm, unlike ova, are a product of continual cell division. Their complex protein structure and location within the thin tissues of the testes also make them easy targets for chemical and other toxins in the bloodstream. See Joan Bertin, "Reproductive Hazards in the Workplace," in Sherill Cohen and Nadine Taub, eds., Reproductive Laws for the 1990s (Clifton, NJ: Humana Press, 1989), 277-305, 301 n.ll. 60. The direction of research, like everything else in our society, is a function of funding. For whatever reasons, funding has not been plentiful for research into questions that our society's power structure may not want to face, such as toxic hazards to the reproductive systems and offspring of men. 61. I do not mean to suggest here that careful research seeking the maximum possible information about female-mediated harm to offspring is the norm. This kind of research is often not done, and drugs, over-the-counter preparations, foods, and other products end up on the market and in the environment, used by women both when they are and are not pregnant, without the benefit of knowing what harm may ensue either to them or to their children. 62. Civil liability against an experimenter for harm to offspring has been sought only against the University of Chicago and Eli Lilly and Company for their conduct of a diethylstilbestrol ("DES") trial in which 840 women were told that the drug was safe both for them and for their children, when they were told anything. See Wetherill v. University of Chicago, 570 F. Supp. 1124 (N.D. 111. 1983); Mink v. University of Chicago, 460 F. Supp. 713 (N.D. I11. 1978). 63. See Merton, "Exclusion of Women." 64. Compare Renee I. Solomon, "Future Fear: Prenatal Duties Imposed by Private Parties," American Journal of Law & Medicine 17 (1991): 411-34, 427 (the woman, not the fetus, employs and directs the obstetrician; so long as she is fully informed about the risks of her prenatal choices, the doctor has fulfilled his or her legal duty). For a holding that the mother's informed consent is an absolute defense to a claim of battery later brought by a prenatally injured plaintiff, see Vandervelden v. Victoria, 502 N.W.2d 276 (Wis. Ct. App.), cert, denied, 114 S.Ct. 388 (1993). 65. W. Page Keeton et al., Prosser and Keeton on Torts, 5th ed. (St. Paul, MN: West Publishing Co., 1984 & Supp. 1988), §122, at 904. In 1980, Michigan became the first state to permit a claim against a child's mother for harm caused by her negligence during the pregnancy. See Grodin v. Grodin, 102 Mich. App. 396, 401, 301 N.W.2d 869, 871 (Mich. Ct. App. 1980). See also Bonte v.

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Bonte, 616 A.2d 464 (N.H. 1992). One state court confronted with such a claim would not permit its prosecution, at least with regard to unintentional harm, to avoid "[s]tate scrutiny of all the decisions a mother must make in attempting to carry a pregnancy to term" and the creation of an adversarial relationship between the pregnant woman and fetus from the moment of conception until birth. Stallman v. Youngquist, 125 111. 2d 267, 531 N.E.2d 355, 360 (1988). 66. See, for example, Barson v. E. R. Squibb & Sons, Inc., 682 P.2d 832 (Utah 1984); Wooderson v. Ortho Pharmaceutical Corp., 681 P.2d 1038 (Kan. 1984), cert, denied, 469 U.S. 965 (1984). See generally Merton, "Exclusion of Women." 67. See, for example, Chambers v. G. D. Searle & Co., 441 F. Supp. 377 (D. Md. 1975). 68. For a full explication of this complicated legal question, see Merton, "Exclusion of Women." 69. See, for example, Shurberg Broadcasting of Hartford v. F.C.C., 876 F.2d 902, 917 (D.C. Cir. 1989). See also Carol Levine, "Has AIDS Changed the Ethics of Human Subjects Research?" Law, Medicine & Health Care 16 (1988): 167-73,172: [I]f there is a right to be a research subject, and again that is arguable, it is not a general right to enter whatever trial one may choose but the right to be offered an equal opportunity to be considered for all trials that are appropriate, given one's medical condition and other scientifically relevant characteristics. Where Carol Levine and I part company on this issue is over the ability of scientists and those allocating resources to properly use amorphous concepts such as "appropriate" and "scientifically relevant." 70. In this statute, 42 U.S.C. 2000e(k)(1978), Congress recognized that disparate treatment because of pregnancy is tantamount to discrimination against women. For a full explication of this complicated legal question, see Merton, "Exclusion of Women." 71. 42 U.S.C. §300a-7(d)(1974 & Supp. 1993). See also Smith v. Cote, 513 A.2d 341, 355-56 (N.H. 1986)(Souter, J., concurring)(physicians need not choose between rendering morally repugnant service and malpractice exposure). 72. The purposes of prohibiting or regulating certain substances—illicit drugs, adulterated food, tobacco, alcohol—are paternalistic prevention of selfabuse, society's interest in keeping its members as functional as possible, and prevention of harm to third parties. On the last score, we seek to prevent intoxicated behavior that can endanger others, and may require people in public to avoid exposing others to certain substances, such as cigarette smoke. But we do not, for example, ban smoking in private homes, although the serious negative health effects of secondary smoke inhalation, especially for children, are well documented. See United States Environmental Protection Agency, Pub. No. EPA/600/6-90/006F, Respiratory Health Effects of Passive Smoking: Lung Cancer and Other Disorders (Dec. 1992). 73. McFall v. Shimp, 10 Pa. D. & C.3d 90, 91-92 (Ct. Common Pleas 1978). The U.S. Supreme Court recently reiterated the primacy of the principle of individual bodily integrity that it recognized over a century ago: " '[n]o right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of the law.' " Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261, 269 (1990) (quoting Union Pacific R. Co. v. Botsford, 141 U.S. 250, 251 (1891)(refusing to compel submission to surgical examination)). Even those ac-


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cused of crime are protected from bodily invasion to acquire the evidence of their misdeeds. See, for example, Winston v. Lee, 470 U.S. 753 (1985)(refusal to permit forcible removal of a bullet from a suspect's arm); Rochin v. California, 342 U.S. 165 (1952)(reversal of conviction because of the forcible administration of an emetic to recover morphine capsules). But see Schmerber v. California, 384 U.S. 757 (1966)(permitting use of blood sample obtained without consent as evidence of intoxication). 74. The most notorious of these decisions, Jefferson v. Griffin Spaulding County Hosp. Auth., 247 Ga. 86, 274 S.E.2d 457 (1981) ordered a woman thirtynine weeks pregnant to submit to a cesarean after a diagnosis of placenta previa. The decision has met with great criticism, not least because despite the dire medical predictions, the woman went on to have a normal delivery of a healthy child outside the hospital. Since then, there have been at least eleven more decisions ordering forced cesareans; in six, the medical predictions have proven wrong. See Susan Goldberg, "Medical Choices During Pregnancy: Whose Decision is It, Anyway?" Rutgers Law Review 41 (1989): 591-623. See also Taft v. Taft, 388 Mass. 331, 446 N.E.2d 395 (1983)(court denied husband's petition to force pregnant wife to submit to cervical suture to avert miscarriage). Of twenty-one cases in which court orders to compel treatment for pregnant women have been sought, they were obtained 86 percent of the time; in 88 percent of those cases, the orders were obtained within six hours. Eighty-one percent of the pregnant women were people of color; all were treated in a clinic or were receiving public assistance. Veronika E. B. Kolder, Janet Gallagher, and Michael T. Parson, "Court-Ordered Obstetrical Interventions," New England Journal of Medicine 316 (1987): 1192-96 (in five years there were thirty-six attempts to override a pregnant woman's refusal of therapy, in no case based on maternal incompetency). "[W]omen have been displaced as actors in the reproductive process; they have become sources of risk and conflict." Lisa C. Ikemoto, "Furthering the Inquiry: Race, Class, and Culture in the Forced Medical Treatment of Pregnant Women," Tennessee Law Review 59 (1992): 487-517, 506. The leading case on compelled transfusion of pregnant women is Raleigh Fitkin-Paul Morgan Memorial Hosp. v. Anderson, 42 NJ. 421, 201 A.2d 537, cert, denied, 377 U.S. 985 (1964)(Jehovah's Witness, eight months pregnant, refused to agree in advance to a transfusion). It is noteworthy that this decision was academic in two senses: first, because the physician was seeking authority to transfuse with no showing of a present emergency, and second, because the physician's insistence apparently drove Mrs. Anderson to leave the hospital before either the birth or the court's decision—an outcome that probably did not enhance the welfare of her fetus. Although a lower New York court confronted with a genuine medical emergency did give a physician authority (as "special guardian of the fetus") to transfuse his pregnant patient, see In re Jamaica Hospital, 128 Misc. 2d 1006, 491 N.Y.S.2d 898 (Sup. Ct. 1985) (Jehovah's Witness in critical condition, bleeding internally, eighteen weeks pregnant, and the mother of ten children), New York's highest court has held that a parent cannot be forced to submit to unwanted treatment for the benefit of dependents, despite the state's legitimate interest in "family unity and parental ties." Fosmire v. Nicoleau, 75 N.Y.2d 218, 551 N.Y.S.2d 876 (1990)(Jehovah's Witness refuses postdelivery transfusion not only for religious reasons but for fear of transfusiontransmitted disease). The Court observed that the state does not ordinarily prohibit individuals from engaging in hazardous activities because they have minor children, and that there is no reason to give the state a more intrusive

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role when the risk assumed by the parent is "the very personal choice [of] medical care." Ibid., 883. See also In re Doe, 260 III. App. 3d 392, 632 N.E.2d 326 (III. App. Ct. 1994), holding that a competent pregnant woman has an absolute right to refuse a cesarean section, even if her choice increases the risk to her fetus. 75. Kary L. Moss, "Forced Drug or Alcohol Treatment for Pregnant and Postpartum Women: Part of the Solution or Part of the Problem?" New England Journal of Criminal and Civil Confinement 17 (1991): 1-16 (in two years, one hundred women were arrested and charged with felonies for substance abuse during pregnancy); Wendy Chavkin, "Mandatory Treatment for Drug Use During Pregnancy," Journal of the American Medical Association 266 (1991): 1556-61. Legislators in nine state have tried to amend child abuse statutes to include prenatal substance abuse. Rorie Sherman, "Split Rulings for Fetal Abuse Cases," National Law Journal, February 24, 1992, p. 3. 76. Dawn E. Johnsen, "Shared Interests: Promoting Healthy Births Without Sacrificing Women's Liberty," Hastings Law Journal 43 (1992): 569-614, 578. 77. Even in the notorious case of Angela Carder, a dying woman who was subjected to a forced cesarean over her voiced objection, the court seemed to stretch to conclude that she may have been incompetent at the time. See In re A.C., 573 A.2d 1235, 1243 (D.C. 1990); Margaret Diamond, "Comment, Echoes from Darkness: The Case of Angela C.," University of Pittsburgh Law Review 51 (1990): 1061-96, 1070-71. 78. See Dawn E. Johnsen, "The Creation of Fetal Rights: Conflicts with Women's Constitutional Rights to Liberty, Privacy, and Equal Protection," Yale Law Journal 95 (1986): 599-625, 605-08. On the kind of "lifestyle" liberties and medical decisions that might be constrained for pregnant women, and only pregnant women, if fetal rights advocates prevail, see, for example, Lawrence J. Nelson and Nancy Milliken, "Compelled Medical Treatment of Pregnant Women: Life, Liberty, and Law in Conflict," Journal of the American Medical Association 259 (1988): 1060-66, 1065; Janet Gallagher, "Prenatal Invasions and Interventions: What's Wrong with Fetal Rights," Harvard Women's Law Journal 10 (1987): 9-58. Prosecutors of a woman charged with substance abuse during pregnancy thought it relevant to offer evidence that she "paid no attention to the nutritional value of the food she ate . . . , she simply picked the foods that tasted good to her without considering whether they were good for her unborn child." Johnsen, "Shared Interests," 578. 79. See Carol Simon, "Note, Parental Liability for Prenatal Injury," Columbia Journal of Law and Social Problems 14 (1978): 47-92, 74-75. 80. George Annas, "Pregnant Women as Fetal Containers," Hastings Center Report 16 (Dec. 1986): 13-14. Many advocates of "fetal rights" seriously propose that the state, or even unrelated private individuals, be permitted to take custody of fetuses—and perforce, the pregnant women containing them. See Jeffrey A. Parness and Susan K. Pritchard, "To Be or Not to Be: Protecting the Unborn's Potentiality for Life," University of Cincinnati Law Review 51 (1982): 257-98, 294; Margery W. Shaw, "Conditional Prospective Rights of the Fetus," Journal of Legal Medicine 5 (1984): 63-116, 89. 81. Renee I. Solomon, "Future Fear: Prenatal Duties Imposed by Private Parties," American Journal of Law & Medicine 17 (1991): 411-34, 432. Bioethicist Thomas Murray has posed an interesting analogous scenario: Suppose a man wanted to move to Texas City to take a higher-paying job. Texas City is a heavily polluted casualty of the petrochemical industry, a "cancer corridor"


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whose residents have a substantially higher risk of developing cancer. Murray asks, "Would we say of a man [with children] who accepted that job that he has done something morally wrong . . . exposing [his] unconsenting offspring to the risk of harm?" Thomas H. Murray, "Who Do Fetal Protection Policies Really Protect?" Technology Review 88 (1985): 12-13. 82. Probably the most cogent and thorough analysis of the moral obligations of the pregnant woman to her unborn child is that of Deborah Mathieu. See her Preventing Prenatal Harm: Should the State Intervene? (Dordrecht, Netherlands: Kluwer Academic Publishers, 1991). 83. Compare the Supreme Court's observation about the purpose of the Pregnancy Discrimination Act: Although "[e]mployment late in pregnancy often imposes risks on the unborn child. . . . [w]ith the [Pregnancy Discrimination Act], Congress made clear that the decision to become pregnant or to work while being either pregnant or capable of becoming pregnant was reserved for each individual woman to make for herself." International Union, United Automobile, Aerospace & Agricultural Implement Workers of America v. Johnson Controls, 499 U.S. 187, 205-06 (1991)(citation omitted). 84. The proposition that women should not be permitted to weigh the risks of becoming research subjects is reminiscent of another current debate, as to whether HIV-infected or crack-addicted women should receive directive counseling not to reproduce under the less-than-perfect conditions of their lives. It has been suggested that it is immoral for these women to become pregnant or to refuse abortion. No one can deny that what appear to be very bad decisions are made by some of these women. But that does not mean it would be right or better to take the power of decision from them all. See Institute of Medicine, Expanding Access to Investigational Therapies for HIV Infection and AIDS (Washington, DC: National Academy Press, 1991), 11; John Arras, "AIDS and Reproductive Decisions: Having Children in Fear and Trembling," Milbank Quarterly 68 (1990): 353-81, 370. See also Ron Bayer, "AIDS and the Future of Reproductive Freedom," in Dorothy Nelkin, David P. Willis, and Scott V. Parris, eds., A Disease of Society: Cultural and Institutional Responses to AIDS (Cambridge, England: Cambridge University Press, 1991): 191-215, for a good account of the extent of this directive model. To indicate the variable, value-laden nature of the judgments of the clinicians likely to become involved in these decisions, Bayer reports that 65 percent of pediatric residents surveyed agree that "women should not have babies at risk for AIDS," but that only 25 percent agreed when the posited risk was of Tay-Sachs, and only 15 percent when it was cystic fibrosis. Ibid., 205. 85. Dorothy E. Roberts, "Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right to Privacy," Harvard Law Review 104 (1991): 1419-82, 1472 (footnote omitted). 86. Carol Levine and Nancy Dubler, "Uncertain Risks and Bitter Realities: The Reproductive Choices of HIV-infected Women," Milbank Quarterly 68 (1990): 321-51, 345-46. Levine and Dubler, two of our foremost ethicists, do not agree fully with the conclusions reached in this chapter. 87. That would include drug-using women, women with no health care coverage, women of low socioeconomic status, women who are not married or high school graduates, women under seventeen or over thirty-four, women who have anemia or aberrant blood pressure, African American women, and women with closely spaced children already born. See Mathieu, Preventing Prenatal Harm, 99-100.

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88. Ibid., 119. 89. The United States has one of the lowest rates in the world for immunizing preschool children against measles, mumps, and polio. U.S. General Accounting Office, Report to the Chairman, U.S. Senate Committee on Finance, Pub. No. GAO/HRD-93-41, Childhood Immunization: Opportunities to Improve Immunization Rates at Lower Cost (Washington, DC: 1993), 2. 90. Ibid., 68. 91. Some may dismiss this proposal as absurd for studies of penile and prostate, or for that matter ovarian and cervical, cancer. It is not absurd, because of the weight of history that must be overcome, which will be most expeditiously jettisoned by a simple uniform practice. No harm will be done by defining those eligible for the rare genuinely genital-specific protocol as "people" rather than as men or women. Moreover, it will help in dealing with the rarer transsexual or hermaphrodite who develops cancer in an organ not usually compatible with his or her chosen or designated gender. 92. Merton, "Exclusion of Women." 93. Statement of Dr. Leslie Wolfe, submitted to the NIH Task Force on Opportunities for Research on Women's Health, June 3, 1991 (on file with the author), 8. 94. One of the best guides on specific biostatistical analyses that ought to be performed, and other ideas for gender-neutral research design, remains Jean Hamilton, "Avoiding Methodological and Policy-Making Biases in GenderRelated Health Research," in U.S. Department of Health and Human Services, DHHS Pub. No. (PHS) 88-50206, Women's Health: Report of the Public Health Service Task Force on Women's Health Issues (Washington, DC: 1987), IV-54 to IV-64, IV-57 to IV-60. The proposed new FDA Guidelines for the Study of Gender Differences, see note 2 supra, state that the pharmacokinetics of a drug on trial should be determined for both genders, and that an effort should be made to discover and analyze gender-related differences in response. As the FDA concedes (Proposed FDA Guidelines for Study of Gender Differences, at 39,407), despite an earlier guideline to similar effect (Food and Drug Administration, Guideline for the Format and Content of the Clinical and Statistical Sections of New Drug Applications (Washington, DC: 1988)), about half of submitted new drug applications still lack such analysis. See also §131(c) of the NIH Revitalization Act, Public Law 103-43, which purports to require that NIH-sponsored clinical research include sufficient female subjects to permit analysis of gender differences in the variables of the study (but which unfortunately creates massive exceptions to this requirement). 95. See Institute of Medicine, Expanding Access, 7. 96. The proposed new FDA Guidelines, note 2 supra, initially appear to suggest a more gender-neutral approach to reproductive studies. See Proposed FDA Guidelines for Study of Gender Differences, at 39,411. However, a close reading reveals that they continue to focus only on risks to offspring from exposures of the female parent, and contain no requirement for animal reproductive studies in male animals (or, for that matter, in female animals prior to clinical studies with human subjects). 97. In 1986, the National Institutes of Health (NIH) and the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA) promulgated the "Policy Concerning Inclusion of Women in Study Populations," NIH Guide, vol. 20 (Feb. 8, 1991): 1-2: "Clinical research findings should be of benefit to all persons at risk of the disease, regardless of gender." The policy requires evaluation of the gender composition of each study proposed for funding, and a


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statement of reasons for excluding members of one gender or for "a disproportionate representation" of one gender. Gender representation should be "appropriate to the known incidence/prevalence of the disease or condition being studied," and reasons for exclusion of one gender must be "well-explained and justified." The justification must be "compelling," but it may consist of "a strong scientific rationale" or "a need to protect the health of the subjects." On its face, the policy sounds very promising. Unfortunately, it went unenforced and essentially disregarded for the first five years of its existence, as was documented in widely publicized Congressional hearings and a Government Accounting Office report. See Nadel, National Institutes of Health, 2, 14. The policy was not even published in the application booklet. Reviewers were instructed not to consider the inclusion of women as a factor of scientific merit. No one was denied funding for lack of gender representativeness; no records were kept about the demographics of protocols submitted and funded; and the policy applied only to extramural research, not intramural programs. Ibid. 98. In Merton, "Exclusion of Women," I lay out in some detail the problems with these approaches. 99. See ibid, for discussion of these options for change and their limitations. 100. An example of this sort of exhortation is the Report of the Committee on the Ethical and Legal Issues Relating to the Inclusion of Women in Clinical Studies, Institute of Medicine, National Academy of Sciences, Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies (Washington, DC: National Academy Press, 1994), which goes a long way toward debunking purported justifications for excluding women from protocols. For a critique of its limitations, see Vanessa Merton, Review Essay, "Women and Health Research," Journal of Law, Medicine & Ethics 22 (1994): 272-79. 101. See, for example, the Special Report of the Board of Health Sciences Policy, Institute of Medicine, National Academy of Sciences, "Is the therapy effective overall (main effect)? Is the therapy effective for women (subgroup effect)?" in Bennett, "Inclusion of Women in Clinical Trials," 288-92, 290.

9 Women as Vessels and Vectors: Lessons from the HIV Epidemic Ruth Faden, Nancy Kass, and Deven McGraw

The AIDS epidemic often is described as a faithful mirror of everything that is wrong or failing in American health care and science policy. This characterization has particular resonance with respect to women. Increasingly, feminist commentators are claiming that virtually every dimension of the American response to the HIV epidemic—from public health policy to biomedical research to medical care—has ignored the interests and experiences of women. 1 These are tough claims about potential moral wrongdoing in medicine and biomedical science that ought to be of central concern to the field of bioethics, but, to date, they have received little attention in the bioethics literature. Although the HIV epidemic has attracted considerable bioethics commentary, the issues standardly discussed have been little informed by considerations of either gender or class. With a few exceptions, most notably the work of Carol Levine,2 women have been considered in the bioethics literature only with respect to reproduction, where the implications of vertical transmission for prenatal screening and childbearing among women who are HIV-positive have been discussed. 3 This focus in the bioethics literature on HIV-positive women and reproduction effectively mirrors how the biomedical literature has focused on women and HIV. In this chapter we argue that, until recently, the only significant interest in women in the huge national research effort on AIDS concerned women's potential to infect others,

Women as Vessels and Vectors: Lessons from the HIV Epidemic 253 either as sexual partners (especially as prostitutes) or, more significantly, as gestators.4 The health interests of women themselves largely were ignored. We argue further that this failure to attend specifically to women's health interests in biomedical research on HIV and AIDS was morally wrong and resulted in harm to women, particularly women infected with HIV. Moreover, it is our contention that such a series of events is a reflection of the biases inherent to biomedical sciences and American society as a whole. The chapter is divided into two parts. In the first part, "Research," we examine the empirical evidence to support the claim that, until recently, women either were viewed as vessels and vectors by the research community or were ignored altogether. This essentially feminist claim increasingly is being made, but its evidentiary base is not well established. We believe the claim is largely correct and we do our best to sustain it by looking at the available evidence in three arenas: the AIDS research portfolio of the Public Health Service, the experience and policies of AIDS-related clinical trials, and the published literature on HIV and AIDS. In each instance, we ask what presence women and women's health interests had in the research and when such interests emerged. We then examine the evidence that women were harmed by the delay or by neglecting to focus specifically on women's health in biomedical research on AIDS and HIV. In the second part, "On Injustice," we argue that the fact situation described in the first part constitutes an injustice to women. Our argumentation here relies both on traditional conceptions of distributive justice and research ethics, and on broader feminist accounts of justice. We examine the difficulty in defining the terms "exclusion" and "underrepresentation" that normally frame debates about the proper inclusion of women in clinical research and argue instead for working with a broader set of considerations in drawing moral conclusions. We also argue that a claim that women have been wronged by the research community does not entail any claims about malice or malevolent intention on the part of researchers or funding agencies, but rather is a reflection of a broader, systemic orientation regarding women and men.

Research The claim that the national research effort on AIDS effectively ignored the infection of and disease progression in women is accepted by many observers of American science policy, but in many respects is difficult to substantiate. In this section, we do our best to add to the evidentiary base begun by other authors, most notably Gena Corea in her book The Invisible Epidemic. 5

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Despite overwhelming evidence since the first year in which AIDS was reported that the disease affected both genders, and despite good biologic and clinical reasons for suspecting that the disease might affect women and men differently, research on AIDS initially was limited to investigations with men. At the same time, claims about when and with what frequency proposals to study the epidemic in women were submitted to funding agencies, as well as claims about how these proposals fared and why, are difficult to sustain. It was impossible for us to establish empirically how many research proposals that focused on or included women were submitted to the National Institutes of Health (NIH); whether these proposals were more likely to be denied funding than proposals that focused on men; and, if so, whether they were rejected for "good cause" such as poor science, or instead because of a belief that the topics were not important. We attempted unsuccessfully to obtain data from the NIH about the number and disposition of all AIDS-related grant applications from 1981-1992 with a gender breakdown of proposed subjects. Information on research proposals that were submitted and were not approved is not published, and direct requests for this information to the National Institute of Allergy and Infectious Diseases (MAID) Communications Office were denied. The best evidence of the extent and nature of research on women and AIDS comes from two sources: the statements of officials of the NIH and Centers for Disease Control (CDC) when asked to answer the charge that women were being ignored in their agencies' AIDS research activities, and the records of the AIDS Clinical Trials Groups (ACTGs).

The NIH's and CDC's Research Portfolio on Women and AIDS By the late 1980s, small studies had been conducted that indicated that HIV and AIDS can be manifested differently in women, and clinicians had noticed differences in their female patients infected with HIV. Activists had begun to make noise about the dearth of research in women, such that the federal government was forced to respond to questions concerning when women would be included in large-scale research studies.6 Their answers revealed a decision on the part of the major government research institutions only to fund large studies of HIV-infected women that focused on vertical transmission. A 1987 Report of the Public Health Service (PHS) Coordinating Committee on Women's Health, responding to questions about the current and potential impact of AIDS in women and about the response from institutions within the Public Health Service, demonstrated this orientation toward women as "vectors and vessels."7 The CDC described for the committee four ongoing studies involving women: (1) a fiveyear study of HIV infection in 250 children who acquired the virus

Women as Vessels and Vectors: Lessons from the HIV Epidemic 255 from their mothers; (2) a study of risk factors for HIV transmission from infected mothers to infants; (3) a study of HIV transmission among 1500 female prostitutes at seven sites; and (4) the Prevention of Perinatal Infections Demonstration Project, designed to develop interventions to prevent HIV transmission to newborns. The CDC also reported plans to expand the prostitute studies, incorporate evaluation of possible intervention strategies, and introduce a HIV seroprevalence survey of pregnant women in New York City.8 Within the NIH, three institutes reported activities that included women. Here, again, the research reflected an interest in women as vectors or as vessels of transmission. Not surprisingly, the focus on vertical transmission was most pronounced in the research program of the National Institute of Child Health and Human Development (NICHD). NICHD reported supporting studies to determine the effects of HIV on pregnant women, pregnancy outcomes, and transmission factors as well as studies to establish the seroprevalence of HIV in pregnant women and new mothers in both the Caribbean and the United States. NICHD also reported supporting a study of the sexual and contraceptive behaviors of women and studies to determine the extent of and risk factors for heterosexual transmission. The National Cancer Institute (NCI) reported two studies: one on HIV and other retroviruses in newborns, with emphasis on defining the mechanisms of transmission and the potential for increasing susceptibility to pediatric cancers, and another on HIV transmission from infected hemophiliac men to their wives and female sex partners. The information in the report provided by NIAID, the main institute involved in HIV research, did not allow for the focus of each study to be determined. However, a review of the literature on studies conducted in the 1980s and Congressional testimony in 1991 from NIAID's Chief of the Division of AIDS (see below) indicate that there were no major studies sponsored by NIAID investigating the epidemic in women other than in their roles as mothers or prostitutes. In response to criticism that the research program with women was inadequate, officials from these government health agencies claimed that there were insufficient numbers of infected women to justify devoting scarce government resources to studying the epidemic in women, or that additional funds were not necessary since the manifestations of the disease were not gender-specific.9 Such claims are disconcerting. By 1987, women comprised 50 percent of AIDS cases in Africa and 10 percent of cases in Europe. 10 In the United States, AIDS had become the eighth leading cause of death in women of reproductive age (15-44) by this time. 11 By the end of the 1980s, protests had grown by advocates for women's health about the lack of research in women. ACT-UP staged

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repeated demonstrations calling for more attention to AIDS in women. They pressed for and succeeded in securing a conference to address the issue. At the December 1990 conference, sponsored by NIAID's Division of AIDS, representatives from the CDC and NIH were peppered with questions about the lack of support for studies in women by activists and by researchers who had submitted proposals that were not funded for research with women. In June 1991, Congressman Ted Weiss, Chairman of the Subcommittee on Human Resources and Intergovernmental Relations of the Committee on Government Operations, held a hearing in which he questioned officials from the CDC and NIH about their agencies' allocation of research dollars to the epidemic in women. At the hearing, Dr. Anthony Fauci, then Associate Director for AIDS Research at NIH, and Dr. Gary Noble, Deputy Director (HIV) at the CDC, provided an update on the research activities on women and HIV and AIDS from their institutions. Fauci reported that in 1990, $34 million of the $96 million spent on natural history studies was "women-related;" in 1991, $36.8 million of the $106.9 million spent was "women-related;" and in 1992, an estimated $41.4 million of $111.2 million would be spent on "women-related" natural history studies.12 However, what Fauci did not reveal was that "women-related," again, largely meant studies relating to vertical transmission. As indicated by Fauci's written and oral testimony, by early 1991 the NIH was supporting five major studies involving women, three of which—the Women and Infants Transmission Study (WITS), the Newark Perinatal Study, and the Women and Infants Cohort Study—were vertical transmission studies. The WITS, sponsored by NICHD and begun in September 1989, remains ongoing. Conducted in five sites with 750 pregnant, HIV-positive women, the study is an expansive examination of vertical transmission, including the effects of pregnancy on the course of the mother's disease, factors predicting transmission, methods for early diagnosis of HIV in the infant, and neurodevelopmental characteristics of children acquiring infection perinatally. Although the focus of the study is on vertical transmission, the study also includes a small cohort of 200 HIV-infected nonpregnant women. These women are followed and examined twice a year to document the natural history of the disease in women, including any gynecological manifestations.13 The Newark Perinatal Study, funded by MAID, was begun in September 1989. This study follows pregnant women, both infected and uninfected, through pregnancy and postnatal outcome, and compares the natural history of women who deliver infected infants with those who deliver uninfected infants. NCI and NICHD began the Women and Infants Cohort Study in January 1986. Almost 500 pregnant women in a community at high risk for HIV were enrolled at three

Table 9-1 Number of AIDS Cases Reported to the Centers for Disease Control: 1981-92

Adultsa Adult females Adult males Children < 13 years

1981

1982

1983

1984

1985

1986

1987

1988

1989

1990

1991

1992

299 6 293 15

1,089

2,925

5,944

11,153

18,182

143

286

538

975

5,658

10,615

17,207

27,131 1,704 25,427

33,083 3,264 29,819

37,685 3,644 34,041

38,256 4,888 33,368

44,832 5,732 39,100

46,335 6,255 40,080

661

692

47 741 29

2,782

75

111

227

323

475

577

652

771

Sources: Years 1981-90: Centers for Disease Control, HIV/AIDS Surveillance Report, Table 8, issued March 1992 presents aggregate numbers, not broken down by gender. Data on adult female cases are from CDC National AIDS Clearinghouse, "Facts about Women and AIDS," CDC HIV/AIDS Prevention Newsletter, Aug. 1992. We subtracted the female number from the Surveillance Report aggregate number first CDC source to get the number of men. Years 1991-92: Centers for Disease Control, HIV/AIDS Surveillance Report, Table 3, 1992 Year End Edition, issued February 1993. a Adults = > 13 years of age.

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centers in New York City; more than half of the women were HIVpositive. The study looked at T-cell level changes during pregnancy in infected versus uninfected women, maternal factors mitigating transmission, and the relationship between immunosuppression and the occurrence of serious infections during pregnancy. In the hearing, Dr. Fauci also announced that the National Heart, Blood and Lung Institute (NHBLI), was expecting to recruit 400 HIV-positive women in order to examine factors involved in maternal transmission.14 Outside the context of vertical transmission, Fauci reported that NCI was conducting a Hemophilia Cohort Study examining the natural history of AIDS and cancer in a cohort of HIV-infected hemophiliac men. As part of the study, 350 female spouses and sex partners were being evaluated for evidence of infection and seroconversion.15 The major MAID study without a vertical transmission focus reported by Fauci was a study of biological and behavior risk factors for heterosexual transmission. The Heterosexual HIV/AIDS Transmission Study (HATS) was initiated in April 1990, several years after the WITS and other perinatal studies were under way. 16 Many of the studies described by Fauci in 1991 look similar, if not identical, to the studies reported in 1987 as ongoing or planned by the PHS Coordinating Committee. Despite the calls for a full-scale, natural history study examining HIV and AIDS in nonpregnant women, no progress had been made as of June 1991, ten years after the first case of AIDS in a woman had been reported. During this period the number of cases of AIDS in women had increased a thousandfold, an increase almost ten times more rapid than that in men. (See Table 9-1.) Similar conclusions can be drawn from the testimony of Dr. Gary Noble about the CDC's research activities. Many of the studies he reported were being conducted in conjunction with the NIH. For instance, he reported that the CDC was participating in the discordant pairs study. He also reported that the CDC was conducting studies of HIV in pregnant women, designed primarily to examine vertical transmission. However, he stated that these studies had been expanded to learn more about the natural history of HIV in women.17 Noble also reported that the CDC was conducting HIV seroprevalence surveys using blood samples obtained from women's health clinics. In addition, he reported that women were being included in the CDC's Adult and Adolescent Spectrum of Disease Project, begun in early 1990. The Spectrum of Disease study, unlike the other studies reported, involves no patient contact. Rather, it examines medical records to determine for surveillance purposes the incidence of HIV and HIV-related conditions.18 Noble reported that as of early April 1991, 7,762 persons had been enrolled, only 8 percent of whom were women. Noble defended the level of female involvement by stating that 20 percent of those en-

Women as Vessels and Vectors: Lessons from the HIV Epidemic 259 rolled in another spectrum of disease study in New York City were women, for a grand total of 10,737 participants in both studies, 11 percent of whom were women.19 When asked specifically about funding levels for CDC natural history studies in women, Noble responded instead by describing the agency's focus on pregnancy and vertical transmission. He noted that in FY91, $14 million had been allocated for a study of childbearing women; approximately $7.5 million had been allocated to look at perinatal HIV prevention projects, of which 80 percent was "estimated to be focused on women;" and about $10 million was budgeted for a study of women and infants in four states.20 While both men strained to justify the responses of their agencies to the epidemic in women, they were asked about the Multicenter AIDS Cohort Study (MACS). The MACS was initiated in 1983 to follow a cohort of 5,000 homosexual and bisexual men.21 The first subjects were enrolled in 1984.22 By 1991, $80 million had been spent on this comprehensive, longitudinal study of the epidemiology of the disease in men.23 By comparison, in 1991, Fauci and Noble merely were speculating about when a smaller-scale natural history study of women might begin.24 In fact, the CDC initiated a pilot study of the natural history of HIV in women in 1992. In April 1993, the CDC component of the study, called the HIV Epidemiology Research Study (HERS), began enrolling HIV-infected and uninfected women. The HIV-infected women must be without an AIDS-defining illness, according to the 1987 CDC definition. Every six months, a medical history is obtained, gynecological examinations are performed, blood is drawn, and CD4 counts are monitored. The study also examines health care utilization, quality of life, contraceptive use, and reproductive decision making. Pregnant women are not the focus of the study, nor are they excluded. Women who become pregnant while enrolled in the study are followed during and after the pregnancy. The study has been funded for five years, although the duration of the study is indefinite at this stage. It is anticipated that 200 HIV-infected and 100 uninfected women will be enrolled at each of the four sites. The current total yearly budget for all four sites is close to $4 million.25 At the subcommittee hearing, Fauci predicted that study awards for NIH's parallel component of the collaborative women's natural history study, called the Women's Interagency HIV Study (WIHS), would be made in 1993.26 However, the Office of AIDS Research recently informed Congresswoman Constance Morella that these awards now will be made in the fourth quarter of 1994. The projected overall accrual of subjects in WIHS is 1,700 HIV-infected women and 375 high-risk uninfected women. 27

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Given that the first cases of AIDS in women were reported to the CDC in 1981 and the number of AIDS cases has been rising faster in women than in men nearly every year since 1986, it is extraordinary that the NIH's first major study of how HIV disease manifests itself and progresses in women will not begin accruing patients before the end of 1994—three years after Fauci first reported plans for the study to Congressman Weiss's subcommittee. When Fauci was asked in 1991 why it was taking so long to initiate a major study in women, he responded that although they knew women were becoming infected, the extent to which women would become infected was really not fully appreciated until relatively recently. . . . When we were faced with conflicting demands for limited resources and we had overwhelming problems in other areas, we chose to put the major component into the kinds of cohort studies that you already know about. ... It would have been logistically very difficult to get a study of the magnitude . . . of a MACS in women at that time, given that there were very few women who were infected. 28

In the early years of the epidemic, the absolute number of infected men was dramatically larger than the number of women, and indeed it would have been difficult if not impossible to have launched a comparable, multicenter study in women at that time. The decision in 1983 to make the MACS all male—indeed, all gay and bisexual males—was appropriate when it was made. However, by the mid- to late 1980s, the number of infected women was rising rapidly. Between 1985 and 1988 the death rate in women had quadrupled.29 By 1988, the number of AIDS cases reported in women surpassed the number that had been reported among men in 1983, the year the MACS began. Nevertheless, it took another six years for a study in women to begin. Fauci's words speak for themselves. Despite the mounting cases, a choice was made to put resources elsewhere.30

Women and Clinical Trials For many HIV-positive men, access to first-rate care and to new drug therapies has been achieved through participation in clinical trials. 31 Until recently, HIV-infected women, and especially pregnant HIVinfected women, have had limited access to these trials. MAID has sponsored three clinical trials programs: the AIDS Clinical Trials Groups (ACTG) beginning in June 1986, the Community Programs for Clinical Research on AIDS (CPCRA) beginning in 1989, and the Division of AIDS Treatment Research Initiative (DATRI) established in October 1991.32 It has been argued that the numbers of women and minorities partic-

Women as Vessels and Vectors: Lessons from the HIV Epidemic 261 ipating in these trials have been unacceptably low.33 An abstract presented in 1991 at the VIIth International Conference on AIDS reported that women accounted for only 6.7 percent of ACTG study entrants. The percent of female study entrants who were nonwhite was 52 percent, significantly less than the 73 percent of nonwhite females reported nationally with AIDS.34 Women of childbearing potential (therefore, almost all HIV-infected women) were excluded from some of the earliest trials.35 Subsequently, women participating in trials not studying vertical transmission have been required to provide proof of a negative pregnancy test and adequate contraception.36 Trials with pregnancy restrictions also prohibit breast-feeding.37 Some trials also require participants to have a private physician, a luxury that is unattainable for many low-income HIV-positive women. Moreover, even in studies in which women are enrolled, gynecological exams generally are not performed, so the impact of interventions on the gynecological manifestations of HIV remain unknown.38 Vanessa Merton's chapter in this volume gives a detailed account of how federal regulations and guidelines have created further barriers to clinical research in women's health. However, it is noteworthy that whereas FDA guidelines generally have excluded women of childbearing potential from the first stage of drug testing, the guidelines specifically make an exception in the case of life-threatening illnesses. Nonetheless, investigators and pharmaceutical companies have been hesitant to include women of childbearing age in research, presumably because of a fear of litigation should potential offspring be harmed. In addition, as 50 percent of women diagnosed with AIDS have been injection drug users (IDUs)39 it is important to note the difficulties that IDUs have faced in securing access to clinical trials. Although 29 percent of adult AIDS cases report exposure through injection drug use,40 only about 12 percent of all adult trial subjects are IDUs.41 Some trials have required a certain level of liver function, and some IDUs have impaired liver function. 42 IDUs also may not be well connected with the sources of medical care from which patients are recruited for ACTG studies. And finally, some commentators have described a prevailing attitude among researchers that users of illicit drugs are difficult research subjects and are unlikely to be reliable in complying with treatment protocols. The experience of at least one study of HIV in IDUs demonstrates, however, that sufficient retention of subjects can be achieved.43 Despite the rocky start, the situation with respect to women has improved. The NIAID Division of AIDS reported that as of August 1992, the overall enrollment of women in clinical trials was 14 percent: 12.9 percent in the ACTG, 19.3 percent in the CPCRA, and 13.3 percent in DATRI.44 These percentages reflect or exceed the percentage of women

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with AIDS, as reported to the CDC. However, the figures on the percentage of women in trials are misleading. Forty-six (29 percent) out of the 160 ACTG trials with adults have no women subjects. Moreover, one-third (34 percent) of the "women" reported as participating in the ACTG are children. Thus, the number of "women" in the ACTG is padded by the inclusion of female pediatric subjects in the totals. Women constitute only 10.6 percent of adults who participate in ACTG trials. There are four women-specific ACTG trials. Three of these focus on vertical transmission (ACTGs 076, 082, and 146). Plans for the fourth, ACTG 200, examining the efficacy and safety of intravaginal fluorouracil to prevent recurrence of cervical dysplasia (precancer of the cervix) in HIV-infected women, were announced by August 1992.45 However, by May 1993, only one woman had been enrolled in the study.46 If the three ACTGs that concentrate on vertical transmission are removed, women comprise 8.9 percent of the subjects in the remaining trials. In 25 percent of these trials, women constitute fewer than 5 percent of the subjects, and in 65 percent of these trials, women comprise fewer than 10 percent.47 The CPCRA trials, designed to reach out to underrepresented populations, have been more likely to include women. There is a women-specific CPCRA trial, 010, testing the efficacy of flucona/ole for the prevention of Candida esophagitis and vaginal/oropharyngeal candidiasis. This trial has accrued 194 of a projected 400 participants.48 Women constitute over 19 percent of participants in CPCRA trials, but as of March 1993, only 6,196 participants had been enrolled in these trials. By comparison, 23,088 participants had been enrolled in ACTGs.49 We already have noted that three of the four all-female ACTGs concentrate on vertical transmission. One study of azidothymidine (AZT), Protocol 076, has stimulated considerable debate. The study, begun in early 1990, is designed to assess whether the rate of HIV transmission from mother to infant can be reduced by continuous oral AZT treatment to HIV-infected pregnant women, intravenous AZT during childbirth, and oral AZT treatment to the newborn infant. The study also seeks to evaluate the safety of AZT for both the pregnant woman and newborn infant. 50 Originally, the study included no maternal health component; 51 attention was focused exclusively on the fetus. No gynecological care was provided to the women, there was no requirement that an internist be included on the study team to meet the women's nonobstetrical health needs, and AZT for the women was discontinued immediately after delivery. In addition, if the father of the baby was available, his consent also was required before the woman could participate in the trial.52 The Women's Health Core Committee of the ACTG revised the protocol in 1991,53 Under the changed protocol, whatever

Women as Vessels and Vectors: Lessons from the HIV Epidemic 263 treatment the women had been receiving during the study would be continued for six weeks postpartum, while the infants would continue to receive their study treatment for eighteen months. The few women whose CD4 counts fell below 200 were provided with AZT for the remainder of the study period. In many respects, 076 exemplifies how women have been considered in the national research effort on AIDS: The trial was started late; when it started, its sole focus was the prevention of pediatric AIDS; and no attention was given to monitoring the effect of AZT on disease progression in women, when gathering such data would have been so easy. Protocol 076 offered a perfect opportunity to gather the information that HIV-positive women and their health care providers need to make reasoned decisions about whether AZT should be taken during pregnancy. Women have an interest in knowing what will cause the best health outcome for their newborns, but also what will cause the best health outcome for themselves. Due to its original construction, however, 076 will tell only half the story. Although infants are being followed for eighteen months, systematic observation of the mothers, even in the revised protocol, ends at six weeks. Thus, there is no opportunity to establish whether the failure to take AZT during pregnancy has any long-term, negative health consequences for women. Yet this is a central issue for women and their clinicians, particularly if some women choose to decline AZT during pregnancy because of a concern that it would be harmful to a developing fetus. Thus, at the conclusion of 076, we may know whether AZT during pregnancy reduces the likelihood of vertical transmission, but we will not know how AZT has affected the health of these children's mothers. The implication of the study's design is that the decision whether to take AZT in pregnancy or to postpone it until after the baby is born can be made solely on the basis of the drug's consequences for children, without consideration of the health effect on their mothers. In the women-specific trials not focusing on vertical transmission, women must have had a negative pregnancy test within seven days of study entry, and they must be sexually abstinent or be using an effective method of birth control during the study and for thirty days after. The early absence of criticism of the pregnancy restrictions in these newer studies also is a disturbing indicator of how women are treated. The decision whether to take a drug for serious illness during pregnancy often is difficult, whether or not the drug is experimental. There is no moral justification, however, for not allowing the pregnant woman a central role in this decision. In most cases, she is best positioned to determine what is in the best interests of herself and her prospective child. Their interests generally are conjoined rather than in opposition. It is in the interest of both the woman and the child for the

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woman to have as long and as healthy a life as possible. That interest may best be served by inclusion in trials, with a chance to receive experimental therapy and the increased quality of medical care often afforded to participants in a trial.54 The bias of the women-focused trials toward questions of vertical transmission at least in part is a reflection of the history of the ACTG Executive Committee, the body that oversees the design and conduct of the AIDS clinical trials, and its efforts to focus on women's health. Even efforts to set up a structure to examine women and AIDS came out of the already established structure addressing pediatric AIDS concerns. The Executive Committee initially had no major subcommittee focusing on women's health. In March 1990, an obstetrics and gynecology working group was established under the guidance of the pediatric core committee.55 The working group conducted surveys of obstetricians and gynecologists from NICHD and NIAID clinical trial units and provided guidance to the pediatric core committee to evaluate the feasibility of conducting some clinical trials to prevent mother-to-child transmission. ACTG 076 was written by the chair of the Pediatric Core Committee.56 This may explain the focus of 076 on infants. The possibility that the interest in women was focused on women as vessels was acknowledged by Dr. Pamela Stratton, in August 1992: "The pediatric epidemic has been driving our involvement in this research. We are now at a crossroads to try to develop a women's health agenda." 57 The position of the women's health working group subsequently was strengthened. A Women's Health Committee (WHC) was established on September 21, 1990.58 This is a core committee, separate and equal in status to pediatrics. The WHC led the effort to increase the enrollment of women in ACTG 175, a study of combination versus monotherapy of non-nucleoside reverse transcriptase inhibitors. The WHC also created a gynecologic assessment form for women in clinical trials. However, as of May 1993, the form had yet to be implemented by all sites of 175 or in all ACTG trials.59 In addition, a Women, Children and People of Color (WCPC) Subcommittee was established within the CPCRA. The WCPC recently developed a policy statement supporting the inclusion of pregnant and nursing women in CPCRA, thus opposing traditional research criteria that exclude pregnant and nursing women.60

Women and the AIDS Literature Given the Public Health Service's portfolio on AIDS and the experience of the AIDS Clinical Trials Groups, one would expect that there might not be a substantial scientific literature on women, HIV, and AIDS. To investigate this thesis, we examined Medline, a computerized database of published medical literature. Table 9-2 presents the results of this

Women as Vessels and Vectors: Lessons from the HIV Epidemic 265 Table 9-2 HIV and AIDS Citations in Medline 2000

Total 1975-1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993a

A

B

C

D

29,138 10 34 449 812 1125 1683 2244 3727 3958 4510 4888 5086 613

7,447 0 6 129 221 292 420 526 777 921 1194 1326 1449 186

4,416 0 6 87 130 176 237 327 478 529 701 796 838 111

237 0 1 6 6 5 11 7 20 26 45 55 50 6

Column A: Any citation in the HIV and AIDS database of Medline 2000 encompassed by the following subject terms: United States (and territories), Human. Column B: Subset of column A's citations, using Female as a major and minor subject term. Column C: Subset of column B's citations, excluding all citations under the following subject terms: mothers, infant, child, fetal diseases, pregnancy, and maternal-fetal exchange. Column D: Subset of column C's citations, using the following subject terms: genital diseases (use of this term in the search will also include searches for more specific conditions such as candidiasis and human papillomavirus), sex factors, and sex characteristics. a This 1993 search covers citations entered in the database through May 1993. The authors would like to thank Melissa A. Horn of the Welch Medical Library, Johns Hopkins Medical Institutions, for her invaluable assistance in designing and executing this search.

analysis. The citations enumerated refer to any publication included in Medline's HIV and AIDS database that met our criteria. Each row indicates the number of citations, total and year-by-year, since 1975. The columns (A-D) are the subject categories encompassed in the search. From columns A to D, the search boundaries gradually have been narrowed in an effort to reach the number of publications dealing specifically with women's unique health issues. Column A presents the total number of citations that involved human subjects from the United States or Puerto Rico (including letters to the editor; case reports; and behavioral, social, or biomedical research). This represents the largest relevant subject category. Column B is the subset of citations from Column A in which "females" are listed either as a major or minor search

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term. In column C, we further eliminated all citations that included the search terms "infant," "child," "fetal diseases," "mothers," "pregnancy," or "maternal—fetal exchange." Thus, Column C represents our attempt to isolate the number of citations that had references to adult women outside of the context of vertical transmission. Finally, Column D is the subset of citations that were referenced using "genital diseases," "sex characteristics," or "sex factors" as search terms. Thus, Column D represents our attempt to capture the literature that focused specifically on the gynecological manifestations of HIV and AIDS. Although this analysis should be taken as only a crude indicator of the nature and extent of the AIDS literature, our findings are suggestive. We found references to "females" in 26 percent of the published literature overall, but this percentage dropped to 15 percent when maternal and pediatric reference terms were deleted. Most strikingly, only one-tenth of 1 percent of the literature appears to speak to the gynecological manifestations of HIV and AIDS (Column D compared to Column A). Prior to 1990, this was true only for one-twentieth of 1 percent of the literature. Since 1990, 1 percent of the literature has included discussion of gynecologic manifestations in some way. In addition, upon further examination of the abstracts, only eighty-seven of the 237 articles in column D are about women-specific manifestations of HIV or AIDS, and only fifty-eight of these are about gynecological conditions specifically. Thus the estimate that only 1 percent of the AIDS literature to date has focused on women-specific manifestations is conservative.

Impact on Women and Women's Health It seems reasonable to infer that the health and well-being of women have been compromised by the way women have been treated in the national research effort on AIDS. For example, it seems plausible that the absence of information about the course of the infection in women has compromised the ability of medical professionals both to recognize the infection in women and to treat women known to be infected. Indeed, there are numerous anecdotal reports of delays in diagnosis attributed to the absence of information in the medical literature and medical community about the early manifestations of infection in women.61 One specific consequence of the insufficient attention to women in research, with its own set of harmful repercussions, has been the absence until 1993 of any "woman-specific" conditions in the CDC case definition of AIDS. Since AIDS first was reported in 1981, the CDC has maintained a list of conditions that constitute a diagnosis. Although the purpose of having this CDC definition is to monitor trends in the number and distribution of cases, the definition is used for multiple

Women as Vessels and Vectors: Lessons from the HIV Epidemic 267 other purposes. The definition is used by clinicians for diagnostic purposes (e.g., someone has AIDS if he is HIV-infected and has esophageal candidiasis, but not if he has oral candidiasis); it entitles HIVinfected individuals to medical, social service, and income benefits; and it is used as the basis for determining how much money communities receive for certain prevention and education programs. The CDC definition of AIDS was revised in 1985, 1987, and 1993. Each revision resulted in an expansion of the number of conditions that allowed for an AIDS diagnosis. Therefore, with each revision, a new set of conditions or severe symptoms "officially" were recognized as being associated with advanced HIV disease, and with each revision, many more persons were classified as having AIDS than previously had been the case. Whether to include woman-specific manifestations of the disease in the definition first was an issue when the definition was being revised in 1987. Growing anecdotal evidence indicated that HIV-infected women had more severe and more frequent gynecologic problems than HIV-negative women. Moreover, the first studies were being published providing evidence that HIV-infected women had an increased incidence of abnormal Pap tests and cervical dysplasia (abnormal cells in the cervix, often a precursor to cervical cancer), were more likely to have chronic and severe pelvic inflammatory disease, and were more likely to have vaginal candidiasis than women without HIV. 62 Those who advocated for inclusion of woman-specific conditions in the definition believed that HIV infection was going unrecognized in women because doctors did not know to associate these recurrent gynecologic problems with HIV. If the CDC were to come out and describe the association, the argument went, more HIV-infected women would be diagnosed, and treatments would be prescribed earlier. Complicating the situation was the fact that many HIV-infected women were experiencing the same AIDS-defining illnesses seen in men. Women were being diagnosed with PCP; women were being diagnosed with toxoplasmosis. Therefore, it did not occur to many clinicians to look beyond that. As a consequence, the fact that many women were experiencing severe gynecologic problems either as their first sign of a compromised immune system or as an additional HIVrelated illness went largely unnoticed. The CDC responded to demands for the inclusion of gynecologic conditions in the definition by claiming that such an addition would result in women being counted whose gynecologic conditions were not due to HIV disease. The CDC maintained that the AIDS surveillance definition was meant to be as specific as possible, even at the expense of sensitivity.63 That is, they wanted to ensure that all persons included in the definition truly had the disease, rather than that all persons with

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the disease were counted in the definition. Of course, others asserted that if a positive HIV serology were also required for labeling a woman as having AIDS (as was required for several AIDS-defining conditions), then the sensitivity problem would be virtually eliminated. Still, the CDC held strong to its position and gynecologic conditions were not included. This is not to say that the CDC conducted no investigative work to examine whether women were being included appropriately in the case definition. The CDC examined death certificates dating from 1973 to 1987 of persons suspected of having HIV as the underlying cause of death, by virtue of having HIV specified as the cause of death or as an underlying cause of death, or having no mention of HIV but a specified cause of death found increasingly to be associated with HIV in women. These death certificates then were compared with the number of deaths reported through AIDS surveillance. The CDC estimated that the 1,988 deaths in women detected through AIDS surveillance (that is, after the 1987 revision) represented 67 to 97 percent of HIV-related deaths. This compared to 1986, when AIDS surveillance identified only 46 to 72 percent of HIV-related deaths in women.64 In response to specific allegations that gynecologic conditions were omitted from the definition, the CDC investigators reported that they did not find that cervical cancer deaths were increasing any faster in states with high AIDS incidence; plus, whereas HIV and AIDS deaths increased dramatically during the mid- to late-1980s in women 15-44 years of age, deaths from cervical cancer increased gradually. However, other researchers conducting retrospective chart reviews in New York found that 15 percent of women who had HIV or AIDS on their death certificates never had met the CDC's definition.65 The "catch-22" of the case definition debate was that it was significantly more difficult for physicians and other advocates to argue for the inclusion of woman-specific conditions in the case definition when no major epidemiologic research had been conducted that described the prevalence of these conditions among large cohorts of HIV-infected women. By comparison, when wasting syndrome, for example, was added to the list of AIDS-defining conditions in 1987, there had been ample evidence from the large cohort studies of men demonstrating its association with advanced HIV disease.66 Without comparable data, anecdotes about women were insufficient evidence to persuade the CDC to add gynecologic conditions to the definition. Indeed, in response to questions about its resolution regarding the AIDS case definition, the CDC stated that there was "no scientific evidence that conclusively links HIV infection to life-threatening illnesses specific only to women." 67 The question, then, is what harms have resulted to women by virtue

Women as Vessels and Vectors: Lessons from the HIV Epidemic 269 of their not being included in the CDC case definition. The first category of harms is medical harms. As mentioned above, physicians relying on the list of indicator conditions in the definition are not likely to recognize other symptoms with which women present as being potentially associated with HIV. Numerous anecdotes exist of women presenting to their physicians with unremitting symptoms—for example, severe pelvic inflammatory disease—with HIV never being suspected, because the women did not fit what was considered to be the prototype of a person with HIV, and because their symptoms were not consistent with what were considered to be the only AIDS-defining conditions, such as PCP and Kaposi's sarcoma.68 Moreover, research suggests that the time from diagnosis with AIDS to death is shorter for women than for men, perhaps because HIV is detected in women later in the progression of the disease,69 in part because infected women are more likely than infected men to be poor. However, an equally large justification for including women in the CDC definition is the effort to secure for women the social security and medical benefits for which persons with an AIDS diagnosis are eligible. To be declared disabled by the Social Security Administration (SSA) and thus to be eligible for Social Security Income and Medicaid, a person must have a severe physical or mental impairment that prevents him or her from "engaging in any substantial gainful activity," and that is expected to be either permanent or to end in death.70 In 1985, the SSA published regulations making AIDS one of the conditions for which "presumptive disability" could be awarded at the field office level, thereby enabling persons with CDC-defined AIDS to receive disability benefits automatically, without having to demonstrate functional impairment.71 But because the CDC definition excluded womenspecific conditions, women were denied these "presumptive disability" benefits if they did not have a CDC AIDS-defining illness.72 These women then had to go through a multi-step eligibility process to prove functional impairment and to receive benefits.73 Similarly, benefits from many local public assistance agencies and other community-based benefits, such as housing assistance, are available only to persons with CDC-defined AIDS.74 Nine states offer programs that pay for pharmaceutical drugs for persons with SSA disability status. The New York City Human Resources Administration's Division of AIDS Services (DAS) automatically confers eligibility on persons with CDC-defined AIDS for case management services, rent, utilities, clothing allowances, and nutrition and transportation supplements. Persons infected with severe HIV can get these benefits only with much greater difficulty. 75 A final category of harm is that many programs, for example Part III (Early Intervention Services) of the Ryan White Care Act,76 determine which communities will receive funding based on the proportion of all

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AIDS cases in the United States reported by the state. Similarly, the Health Omnibus Programs Extension Act of 1988 (HOPE) bases its funding allocations on state population and the number of AIDS cases per state in order to distribute funds for health education, local public information, state and local minority initiatives, and school-based HIV/ AIDS education. 77 States with a greater proportion of women infected with HIV are not appropriately represented in the projections, given that the projections are based on the AIDS caseload. And given that prevention and education are the focus of many of these programs, both HIV-negative and HIV-infected women have been harmed by their lack of inclusion in the caseload.

On Injustice It is one thing to establish that the first major natural history study of HIV-infected women did not begin enrolling participants until 1993 or that one-tenth of 1 percent of the published literature on HIV and AIDS makes reference to the gynecological manifestations of these diseases. It is another thing to claim that this state of affairs in any sense represents an injustice. Although this conclusion may be obvious to feminists whose historical perspective and understandings of science allow us to fit these data in a wider evidentiary and conceptual context, we are aware from discussions with other colleagues that this conclusion is far from selfevident. Even if the empirical description provided in the preceding section is acknowledged to be accurate, it does not necessarily follow that women in some relevant sense have been treated wrongfully. To cite an extreme comparison, that women have been ignored by the national research effort on prostate cancer is not debatable, but neither is it of any negative moral consequence, because women do not get prostate cancer. In this section, we consider the moral case that women have been wronged by the national research effort on HIV and AIDS. The most influential examination of the requirements of justice in the conduct of research involving human subjects remains the Belmont Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, published in 1979. 78 Relying on an account of justice as fairness in distribution, the Belmont Report maintained that neither the burdens nor the benefits of participation in research should fall disproportionately on any particular group. Although the fair distribution of benefits was mentioned explicitly, the examples used to explicate the demands of justice all entailed cases in which research subjects were selected exclusively from among the poor or racial or religious minorities, and thus where the injustice rested primarily on an unfair distribution of research-related burdens.

Women as Vessels and Vectors: Lessons from the HIV Epidemic 271 No analytic account was provided of what would constitute an unfair distribution in the selection of research subjects in terms of disproportionate access to the benefits of research. The question of what constitutes a disproportionate or unfair distribution, however, is central to any substantive analysis of the ethics of research. The research enterprise by its nature is selective. Investigators and funding agencies select both the research questions to be pursued and the general population and particular sample in which these questions will be studied. How are the adequacy of the criteria by which selections are made to be judged against the demands of justice? Much of the literature claiming that women have been treated unjustly by the scientific community has focused on two underanalyzed but implicitly normative terms: "underrepresentation" and "exclusion." We find both of these terms inadequate to the task of making the claim of injustice in the context of AIDS research, albeit for different reasons. Of the two, "exclusion" is the more straightforward, both morally and conceptually. A categorical exclusion of women from participation in research surely violates any plausible account of justice. "Exclusion" generally refers to policies or practices that have prohibited women (or certain subgroups of women, such as women of reproductive age or pregnant women) from participating in particular studies or classes of studies. Whether women (or any subgroup) have been excluded by policy, stated protocol requirements, or standard practice from a particular study or class of studies is, in principle, simple to establish. In practice, however, relevant data about the reasons why no women are enrolled in a study may be difficult to obtain. Moreover, with the notable exception of the practice of, until recently, excluding women of childbearing age from early drug studies (see chapter 8 in this volume), much of the claimed injustice, both within AIDS research specifically and in biomedical research generally, has not turned on formal exclusionary policies or practices but on other selection processes or criteria that disadvantage women. Frequently the term "underrepresentation" has been used to capture these more subtle concerns. Unfortunately, however, this term possesses neither the conceptual clarity nor the normative force required to bear the full weight of claims of injustice. It by no means is clear what is meant by "underrepresentation." For example, it might be argued that women are underrepresented if the proportion of women who are participants in a particular study is less than the proportion of women who suffer from the medical condition that is under investigation. Alternatively, it could be argued that what should be at issue is not some simple sense of proportional representation, but whether sufficient numbers of women are included to permit an analysis of effects or outcomes specific to women. Yet another formulation focuses

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not on the individual study but rather on a program of research in a particular area and asks whether women have been underrepresented in the program as a whole. Here again, a claim of underrepresentation has to be more finely parsed-—is the criterion for underrepresentation proportional representation (e.g., that the proportion of women participants across studies should track the proportion of women affected by the condition under study) or is the criterion whether, overall, the program of research has included studies with sufficient numbers of women participants to permit an analysis of effects or outcomes specific to women? Consider, for example, the experience of the ACTG program, for which relevant data are most complete. Out of a total of 160 adult ACTGs, forty-six (29 percent) have all-male participants, four (2 percent) have all-female participants, and 110 (69 percent) have both men and women. However, of the 103 mixed adult trials for which we could obtain information, 100 (97 percent) have exclusions specific to pregnant or lactating women. We do not know how many of the all-male studies were all-male by design, that is, by exclusion, or because of inadequate or otherwise unsuccessful recruiting efforts among women. Overall, 10.6 percent of adult participants in these 160 trials are female, and overall the proportion of AIDS cases in adults and adolescents reported to the CDC occurring in females is 11 percent. (By 1992 this proportion had risen to 13.5 percent.) Although we did not perform calculations to determine the statistical power to identify subgroup differences within ACTG trials that included women, it is likely that in many of these trials (e.g., small studies in which women comprise fewer than 10 percent of the total sample) the numbers of women are insufficient to permit such analyses. What are we to conclude from these numbers? Although there is a 10:1 ratio of male-only to female-only studies, the overall proportion of women participants closely tracks the proportion of AIDS cases in women reported to the CDC. Yet however the terms are parsed and however suggestive of injustice they may be, "exclusion" and "underrepresentation" do not capture the full force of the injustice done to women by the national research program on AIDS. These terms, and the numbers invoked to test their occurrence, do not capture the injustice that results even when women are included as participants in "adequate numbers" (however defined) but the research questions appropriate for women are not studied. That is, it is an injustice when women are assumed to be like men without penises, when no thought is given in the design of the study to the possibility that there may be specific differences in the causes or manifestations of the disease under investigation. In the case of HIV, studies involving women in sizable numbers were initi-

Women as Vessels and Vectors: Lessons from the HIV Epidemic 273

ated at a time when there already was thought to be a basic understanding of the primary manifestations of HIV disease, and this understanding was applied to studies involving women despite mounting anecdotal evidence that women were experiencing gynecological manifestations. The failure to include gynecological outcomes in studies that involved women subjects was as much an injustice as the failure to include women themselves. Moreover, the terms "exclusion" and "underrepresentation" do not capture the injustice that results when women are studied, not to advance women's health, but rather to advance the health of others. The early, nearly exclusive focus on vertical transmission in studies enrolling women is perhaps the most powerful evidence of the unfair treatment of women in AIDS research. Although these studies did contribute information about HIV disease in pregnancy, their primary focus was the prevention of HIV infection in children. And finally, the failure to mount, again until recently, any significant research effort for the development of antiviricidal preparations that could be used by women to protect themselves from contracting the infection is yet additional evidence of a kind of injustice not well captured by a simple demonstration of exclusionary policies or a head-counting approach to underrepresentation. These instances of injustice are only partly distributional in character. To be sure, these practices contributed to inadequacies in the research base on women and AIDS that, as we argued in the first part above, had a detrimental impact on women's health and quality of life, particularly because of the influence on the CDC's definition of AIDS. Moreover, these practices resulted in an unfair distribution of the burdens in relation to the benefits of AIDS research. Even when women bore the burdens and risks of participation in research, the failure to attend to the health interests of women in these studies restricted significantly the potential benefit to women as a group and perhaps to the participants themselves. These practices also are unjust, however, because they perpetuate the oppression of women. As Iris Marion Young has argued, groups suffer vast and deep injustices that are not purely isolated matters of distribution.79 It is no accident that gynecological outcomes and exams routinely were not part of research protocols. This failure both reflects and maintains what Young calls "cultural imperialism," a kind of oppression in which the identity and experiences of the dominant group in society are treated as the universalized norm, such that the experiences of other groups are rendered invisible. As Debra DeBruin has argued, our society does not conceive of men in terms of gender; it conceives of them gender-neutrally, as persons. Thus, men's identity and experience serve, in effect, as the characterization or standard of what it is to be a

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person. This is true only of men's identity and experience; it is not true of women's. 80

Insofar as the male norm is the universal norm, studies of men are the equivalent of studies of adults. Whereas it was recognized early that unique research questions might be presented by IDUs separately from gay men, or by children rather than adults, there was an assumption that by studying men, an understanding of AIDS in women would be achieved. The notion that the experiences of HIV-infected women might be distinct from those of HIV-infected men (and thus worthy of independent investigation) enters the scientific consciousness only insofar as these experiences in some respect are deviant from those of men's, as in the context of reproduction. And here, the focus is not on the interests of women but on the interests of the children. In the case of HIV and AIDS, the invisibility of women's experiences no doubt was intensified by the fact that the women most affected are multiply oppressed; they not only are female, but are members of other groups—ethnic and racial minorities and the poor—that also are subject to cultural imperialism and also arguably were given inadequate attention by the research community81 and suffered clinically. 82 It is important to emphasize that this sort of oppression is not the product of deliberate actions or malevolent intent. We have no image of male investigators or male officials of funding agencies calculating how to set the AIDS research agenda so as to advantage men over women. On the contrary; it must be emphasized that oppression is structural and systemic. As Young puts it, oppression does not fit the paradigm of one group consciously and intentionally trying to keep another group down. Rather, historical and social forces result in the systematic diffusion of oppression in everyday practices, attitudes, assumptions, and behaviors. 83 Indeed, we agree with Susan Sherwin that it takes "conscious and persistent effort to resist complicity" with these oppressive patterns.84 The scientists and physicians, both male and female, who called early for specific research on women's health and HIV, thus are to be particularly commended for their capacity to see beyond the blinding forces of the conventional male norm. While we speak here only to the injustice resulting from the impact of the male norm on AIDS research, others have written cogently of this phenomenon in other areas of investigation and in science generally.85 Many proposals have been put forward suggesting how best to alter the scientific process and research community in order to counter these injustices. Increasingly it is argued that a critical element, if not the critical element, is the inclusion of more women in positions of authority in science and medicine. 86 Evidence in support of this position is available from the AIDS experience; a recent report found that enroll-

Women as Vessels and Vectors: Lessons from the HIV Epidemic 275

ment of women in AIDS clinical trials in New York (where the prevalence of AIDS in women is very high) was two times greater if the trial unit had a woman as the principal or coprincipal investigator than if the unit was headed by a man.87 Also, we know anecdotally of at least one study in which the inclusion of a woman scientist in a position of authority was instrumental in the modification of the study protocol to include specific tests for gynecological manifestations.88 Moreover, the effort to establish the Women's Health Core Committee within the AIDS Clinical Trial system was driven by women. In turn, this group has tried to include more women as participants in clinical trials, to design more trials that focus exclusively on women, and to have gynecologic examinations included in study protocols.89 As we maintain in the first part above, the decision to initiate the AIDS research effort among gay and bisexual men in the early years of the epidemic was appropriate and just, since the largest and most rapidly increasing numbers of incident cases occurred in that part of the population. However, at some point thereafter, and certainly by the time heterosexual men were the subject of study, the health problems of women with respect to HIV and AIDS should have become the subject of inquiry as well. Accounts of oppression make it easy to understand why, for almost ten years, it was not thought appropriate or necessary to fund large-scale studies devoted to how women become infected with HIV, how to prevent HIV infection in women, or how the infection progresses in women. The continuation of such injustices in the future is unacceptable.

Notes 1. Nora Kizer Bell, "Women and AIDS: Too Little, Too Late?" Hypatia 4 (Fall 1989): 47-62; Gena Corea, The Invisible Epidemic (New York, NY: Harper Collins, 1992); Hoangmai Pham, Phyllis Freeman, and Nancy Kohn, Understanding the Second Epidemic: The Status of Research on Women and AIDS in the United States (Washington, DC: Center for Women Policy Studies, 1992); Sue V. Rosser, "Perspectives: AIDS and Women," AIDS Education and Prevention 3 (1991): 23140; Kathleen D. Stoll, Women and the Definition of AIDS (Washington, DC: Center for Women Policy Studies, 1992); Paula A. Treichler, "AIDS, Gender, and Biomedical Discourse: Current Contests for Meaning," in Elizabeth Fee and Daniel M. Fox, eds., AIDS: The Burdens of History (Berkeley, CA: University of California Press, 1988), 190-267. 2. Carol Levine, "Women and HIV/AIDS Research: The Barriers to Equity," Evaluation Review 14 (1990): 447-63. 3. 'Brenda Almond and Carole Ulanowsky, "HIV and Pregnancy," Hastings Center Report 20 (Mar./Apr. 1990): 16-21; John D. Arras, "AIDS and Reproductive Decisions: Having Children in Fear and Trembling," Milbank Quarterly 68 (1990): 353-81; Ronald Bayer, "Perinatal Transmission of HIV Infection: The Ethics of Prevention," Clinical Obstetrics and Gynecology 32 (1989): 497-505; Carol Levine and Nancy Neveloff Dubler, "Uncertain Risks and Bitter Realities: The

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Reproductive Choices of HIV-infected Women," Milbank Quarterly 68 (1990): 321-51. 4. Our chapter focuses exclusively on American science policy. Although the conduct of the American research establishment has implications for women worldwide, women also obviously have been affected by the policies and experiences of scientific communities outside the United States. 5. Corea, The Invisible Epidemic; Kathryn Anastos and Carola Marte, "Women—The Missing Persons in the AIDS Epidemic," Health/PAC Bulletin (Winter 1989): 6-13; Carole A. Campbell, "Women and AIDS," Social Science and Medicine 30 (1990): 407-14; Kathryn Caravano, "More Than Mothers and Whores: Redefining the AIDS Prevention Needs of Women," International Journal of Health Services 21 (1991): 131-42; Pham, Freeman, and Kohn, Understanding the Second Epidemic; Michael R. Spence and Annette C. Reboli, "Human Immunodeficiency Virus Infection in Women," Annals of Internal Medicine 114 (1991): 827-28. 6. Corea, The Invisible Epidemic; Pham, Freeman, and Kohn, Understanding the Second Epidemic; U.S. Congress, Committee on Government Operations, Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease: Falling Through the Cracks (Washington, DC: U.S. Government Printing Office, June 6, 1991). 7. U.S. Public Health Service, Women and AIDS: Initiatives of the Public Health Service—A Report of the PHS Coordinating Committee on Women's Health Issues (Washington, DC: U.S. Government Printing Office, 1987). 8. Ibid. 9. Corea, The Invisible Epidemic; Kathleen D. Stoll, Women and the Definition of AIDS (Washington, DC: Center for Women Policy Studies, 1992), 1, Appendix B; Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 119. 10. Lynne Jones and Jose Catalan, "Women and HIV Disease," British Journal of Hospital Medicine 41 (1989): 526-38, 526. 11. Tedd V. Ellerbrock et al., "Epidemiology of Women with AIDS in the United States, 1981 Through 1990," Journal of the American Medical Association 265 (1991): 2971-75, 2971. 12. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 113. 13. McGraw conversation with Amy Sheon, Health Specialist, National Institute of Allergy and Infectious Diseases (NIAID), Division of AIDS, June 21,1993. 14. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 74-75, 80. 15. Ibid., 75. 16. Ibid., 73. 17. Ibid., 65. 18. McGraw conversation with Dr. Dora Warren, Epidemiologist, Division of Reproductive Health, Women's Health and Fertility Branch, Centers for Disease Control, May 1993. 19. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 120. 20. Ibid., 117. 21. Ibid., 68, 113. 22. Richard A. Kaslow et al., "Infection with the Human Immunodeficiency Virus: Clinical Manifestations and Their Relationship to Immune Deficiency," Annals of Internal Medicine 107 (1987): 474-80, 474.

Women as Vessels and Vectors: Lessons from the HIV Epidemic 277 23. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 116. 24. Ibid., 99, 114-22. 25. McGraw conversation with Dr. Dora Warren, April 1993. Dr. Warren is also Project Officer of the HERS study. 26. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 114. 27. Letter from Jack Whitescarver, Ph.D., Deputy Director, Office of AIDS Research, April 28, 1993, to Congresswoman Connie Morella, in response to her letter of March 24, 1993, inquiring about the natural history study for women. 28. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 119. 29. Susan Y. Chu, James W. Buehler, and Ruth L. Berkelman, "Impact of the Human Immunodeficiency Virus Epidemic on Mortality in Women of Reproductive Age, United States," Journal of the American Medical Association 264 (1990): 225-29, 226. 30. Published information on the federal response to women and AIDS did not include research that may have been investigator-initiated (in contrast to research proposals submitted in response to a government agency's specific request for proposals on a designated topic). Certainly no investigator-initiated studies related to women and HIV were reported by Drs. Fauci and Noble. However, the situation with respect to research on AIDS in women has improved since the 1991 hearings. Reports of the Office of AIDS Research from 1992 and 1993 describe several new studies. The National Cancer Institute (NCI) is sponsoring a series of longitudinal studies examining the incidence of human papilloma virus (HPV)-associated cervical cancer in HIV-infected women. The National Heart, Lung and Blood Institute (NHLBI) is investigating transmission of the virus from hemophiliacs to their partners, with an emphasis on specific immune markers to disease progression in women. In addition, NHLBI is supporting a study looking at the cardiac complications of HIV infection in women. NIH Office of AIDS Research, Status Report on Women and AIDS Activities, The National Institutes of Health, January 10, 1992 and May 5, 1993. However, no additional evidence has surfaced refuting the claim that during the first decade of the HIV epidemic almost all research on women focused on vertical transmission. 31. Pham, Freeman, and Kohn, Understanding the Second Epidemic, 8. 32. National Institute of Allergy and Infectious Diseases (MAID), "Backgrounder: Clinical Trials for AIDS Therapies," prepared by the NIAID Office of Communications, July 1992. The original studies, the AIDS Treatment Evaluation Units (ATEUs) and Clinical Study Groups (CSGs), were joined in 1987 and the acronym ACTG was formulated. 33. Corea, The Invisible Epidemic, 50, 80-82; Deborah J. Cotton, Judith Feinberg, and Die nne M. Finkelstein, "Participation of Women in a Multicenter HIV Clinical Trials Program in the United States," in VIIth International Conference on AIDS 7 (1991): abstract no. TU.D.114, p. 87; Deborah J. Cotton et al., "Determinants of Accrual of Women to a Large, Multicenter Clinical Trials Program for Human Immunodeficiency Virus Infection," Journal of Acquired Immune Deficiency Syndromes 6 (1993): 1322-28; Pham, Freeman, and Kohn, Understanding the Second Epidemic, 8, 37-41; Iris L. Long, Women's Access to Government-Sponsored AIDS/ HIV Clinical Trials: Status Report, Critique and Recommendations (New York, NY: AIDS Coalition to Unleash Power (ACT-UP), April 27, 1993).

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34. Cotton, Feinberg, and Finkelstein, "Participation of Women." 35. Joyce A. Korvick, "Women's Participation in AIDS Clinical Trials Group (ACTG) Trials in the USA—Enough or Still Too Few?," presented at the IXth International Conference on AIDS, Berlin, West Germany, June 6-11, 1993. One commentator claims this policy of exclusion was still in operation as late as 1989. Corea, The Invisible Epidemic, 172. 36. Based on an examination of every ACTG protocol in the AIDSTRIALS online database, as of March 1993. 37. Ibid. 38. Corea, The Invisible Epidemic, 80-82; McGraw conversation with Dr. Pamela Stratton, Special Assistant in Obstetrics and Gynecology, Pediatric, Adolescent and Maternal AIDS Branch of NICHD, May 1993. One obstetriciangynecologist working in the Johns Hopkins Hospital AIDS Clinic in Baltimore, Maryland, examined records of patients and found that gynecologic exams had been performed on fewer than 50 percent of the female patients, yet one-third of these women had an active gynecologic problem. Dr. Jean Anderson, Johns Hopkins Hospital, conversation with McGraw, May 1993. 39. U.S. Department of Health and Human Services, Centers for Disease Control, HIV/AIDS Surveillance Report, 1992 Year-End Edition, issued February 1993, 11. 40. Ibid., 9. 41. AIDS Clinical Trials Information Service, a service of the U.S. Department of Health and Human Services, Public Health Service, as of March 1993. 42. Ibid. 43. Joseph B. Margolick et al., "Changes in T-Lymphocyte Subsets in Intravenous Drug Users with HIV Infection," Journal of the American Medical Association 267 (1992): 1631-36. 44. Fact sheet from NIAID Division of AIDS, August 1992, obtained from the AIDS Clinical Trials Information Service. 45. McGraw conversation with Dr. Pamela Stratton, May 1993. This information was also contained in copies of slides sent by Dr. Stratton from a seminar on NIH priorities for HIV infection in women that she conducted in August 1992 for obstetrician-gynecologists from the AIDS Clinical Trials Units. 46. McGraw conversation with Dr. Pamela Stratton, May 1993. 47. Examination and analysis of data from Demographic Summary of ACTG Study Entries, AIDS Clinical Trials Information Service, through March 19, 1993. 48. Ibid. 49. Ibid. 50. Printout on ACTG Protocol 076, received from AIDS Clinical Trials Information Service. 51. Rosser, "Perspectives: AIDS and Women," 235. 52. Corea, The Invisible Epidemic, 205; McGraw conversation with Dr. Pamela Stratton, May 1993. Dr. Stratton stated that the women in Protocol 076 were not sick enough (did not have CD4+ counts low enough) to qualify for AZT outside of the study. If they had been sick enough to qualify for AZT, it would have been unethical to randomize them. 53. McGraw conversation with Dr. Pamela Stratton, May 1993. 54. See chapter 8 in this volume. 55. Dr. Anne Willoughby of NICHD suggested that obstetriciangynecologists from the clinical trials units sponsored by NICHD and NIAID

Women as Vessels and Vectors: Lessons from the HIV Epidemic 279 meet to discuss obstetric-gynecologic and HIV issues. Dr. Pamela Stratton, then an obstetrician-gynecologist with the U.S. Navy, was recruited to a steering committee for the group; she subsequently established an obstetricgynecologic working group in March 1990, under the guidance of the Pediatric Core Committee. McGraw conversation with Dr. Stratton, February 1983. 56. Letter (with appendices) from Dr. Pamela Stratton to Lawrence Corey, M.D., Chair, ACTG Executive Committee, requesting the establishment of a Women's Health Core Committee, August 22, 1990. 57. Copies of Dr. Pamela Stratton's slides from August 1992 seminar (see note 45). 58. Letter from Dr. Lawrence Corey to Dr. Pamela Stratton, September 21, 1990. 59. McGraw conversation with Dr. Pamela Stratton, May 1993. 60. MAID Division of AIDS, Recent Accomplishments/Developments Fact Sheet, August 1992. 61. Corea, The Invisible Epidemic; Stoll, Women and the Definition of AIDS, 3; unpublished interviews conducted in 1991-93, "Societal Responses to the Reproductive Choices of HIV Infected Women," research project funded by the Health Resource and Service Administration, BRH-PB036-01-0, Ruth Faden and Nancy Kass, coinvestigators. 62. Caroline Bradbeer, "Is Infection with HIV a risk factor for cervical intraepithelial neoplasia?" [letter to the editor] Lancet 2 (1987): 1277-78; Joanne L. Rhoads et al., "Chronic Vaginal Candidiasis in Women With Human Immunodeficiency Virus Infection," Journal of the American Medical Association 257 (1987): 3105-07; Frederick H. Sillman et al., "The relationship between human papilloma virus and lower genital tract neoplasia in immunosuppressed women," American Journal of Obstetrics and Gynecology 150 (1984): 300-08; Frederick H. Sillman and Alexander Sedlis, "Anogenital papillomavirus infection and neoplasia in immunodeficient women," Obstetrics and Gynecology Clinics of North America 14 (1987): 537-58. 63. Carol Levine and Gary L. Stein, "What's in a Name? The Policy Implications of the CDC Definition of AIDS," Law, Medicine & Health Care 19 (1991): 278-90, 279. 64. James W. Buehler, Debra L. Hanson and Susan Y. Chu, "The Reporting of HIV/AIDS Deaths in Women," American Journal of Public Health 82 (1992): 1500-05. 65. Levine and Stein, "What's In a Name," 281-82. 66. Usha Mathur-Wagh et al., "Longitudinal study of persistent generalised lymphadenopathy in homosexual men: relation to acquired immunodeficiency syndrome," Lancet 1 (1984): 1033-38; Donna Mildvan, "Acquired Immune Deficiency Syndrome (AIDS) or an Opportunistic Infection? Toward a Clinical Definition of AIDS," in Pearl Ma and Donald Armstrong, eds., The Acquired Immune Deficiency Syndrome and Infections of Homosexual Men (New York, NY: Yorke Medical Books, 1984), 240-52. 67. Centers for Disease Control (CDC), AIDS Case Definition and Women, unpublished one page fact sheet, 1991, as published in Stoll, Women and the Definition of AIDS, 4, appendix B. 68. Corea, The Invisible Epidemic; Stoll, Women and the Definition of AIDS, 3; unpublished interviews conducted in 1991-93, "Societal Responses to the Reproductive Choices of HIV-Infected Women" (see note 61). 69. Richard D. Moore et al., "Zidovudine and the National History of the

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Acquired Immunodeficiency Syndrome," New England Journal of Medicine 324 (1991): 1412-16. 70. U.S. Congress, Office of Technology Assessment, The CDC's Case Definition of AIDS: Implications of the Proposed Revisions—Background Paper, OTA-BP-H89 (Washington, DC: U.S. Government Printing Office, Aug. 1992). 71. Ibid., 33-35. 72. There also were conditions that affect both men and women that were excluded from the CDC definition, such as bacterial pneumonia. 73. In 1991, the official link between the AIDS definition and automatic presumptive disability was removed. Levine and Stein, "What's In a Name," 283. However, when the Social Security Administration produced a new list of conditions that would allow persons to be classified as "presumptively disabled" and therefore receive SSI automatically, all conditions in the CDC 1987 definition of AIDS except for Kaposi's sarcoma were included. McGraw conversation with Katherine Lynch, Gay Men's Health Crisis, New York, NY, June 17, 1993: Stoll, Women and the Definition of AIDS, 16-17. Therefore, disability awards are still linked to the CDC definition of AIDS. 74. Subcommittee on Human Resources and Intergovernmental Relations, Women and HIV Disease, 18, 26, 45. 75. Levine and Stein, "What's in a Name," 283. 76. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, P.L. 101-381. 77. U.S. Conference of Mayors, "Landmark Ryan White CARE Act Enacted," AIDS Information Exchange, September, 1990. 78. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, DC: U.S. Government Printing Office, 1978). 79. Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990). 80. Debra DeBruin, "Justice and the Inclusion of Women in Clinical Studies: A Conceptual Framework," in Institute of Medicine, Report of the Committee on the Legal and Ethical Issues Relating to the Inclusion of Women in Clinical Research, vol. II (Washington, DC: National Academy Press, 1994), 127-50. 81. Cotton, Feinberg, and Finkelstein, "Participation of Women;" Cotton et al., "Determinants of Accrual." 82. Moore et al., "Zidovudine and the National History of the Acquired Immunodeficiency Syndrome." 83. Iris Marion Young, "The Five Faces of Oppression," Philosophical Forum 19 (1988): 270-90, 275. 84. Susan Sherwin, "Women in Clinical Studies: A Feminist View," in Institute of Medicine, Report of the Committee on the Legal and Ethical Issues Relating to the Inclusion of Women in Clinical Research, 11-17. 85. Sandra Bem, The Lenses of Gender: Transforming the Debate on Sexual Inequality (New Haven, CT: Yale University Press, 1993); Joan Altekruse and Suzanne McDermott, "Contemporary Concerns of Women in Medicine," and Ruth Bleier, "Science and the Construction of Meaning in the Neurosciences," in Sue V. Rosser, ed., Feminism Within the Sciences and the Health Care Professions: Overcoming Resistance (Oxford, England: Pergamon Press, 1988), 65-88, 91-104. 86. Altekruse and McDermott, "Contemporary Concerns of Women in Medicine."

Women as Vessels and Vectors: Lessons from the HIV Epidemic 281 87. Cotton et al., "Determinants of Accrual of Women," 11. 88. McGraw conversation with Liza Solomon, Project Director, ALIVE study, Johns Hopkins University School of Hygiene and Public Health, April 1993. 89. McGraw conversation with Dr. Pamela Stratton, February 1993.

10 Gender, Feminism, and Death: Physician-Assisted Suicide and Euthanasia Susan M. Wolf

The debate in the United States over whether to legitimate physicianassisted suicide and active euthanasia has reached new levels of intensity. Oregon has become the first state to legalize physician-assisted suicide, and there have been campaigns, ballot measures, bills, and litigation in other states in attempts to legalize one or both practices.1 Scholars and others increasingly urge either outright legalization or some other form of legitimation, through recognition of an affirmative defense of "mercy killing" to a homicide prosecution or other means.2 Yet the debate over whether to legitimate physician-assisted suicide and euthanasia (by which I mean active euthanasia, as opposed to the termination of life-sustaining treatment) 3 is most often about a patient who does not exist—a patient with no gender, race, or insurance status. This is the same generic patient featured in most bioethics debates. Little discussion has focused on how differences between patients might alter the equation. Even though the debate has largely ignored this question, there is ample reason to suspect that gender, among other factors, deserves analysis. The cases prominent in the American debate mostly feature women patients. This occurs against a backdrop of a long history of cultural images revering women's sacrifice and self-sacrifice. Moreover,

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dimensions of health status and health care that may affect a patient's vulnerability to considering physician-assisted suicide and euthanasia—including depression, poor pain relief, and difficulty obtaining good health care—differentially plague women. And suicide patterns themselves show a strong gender effect: women less often complete suicide, but more often attempt it.4 These and other factors raise the question of whether the dynamics surrounding physician-assisted suicide and euthanasia may vary by gender. Indeed, it would be surprising if gender had no influence. Women in America still live in a society marred by sexism, a society that particularly disvalues women with illness, disability, or merely advanced age. It would be hard to explain if health care, suicide, and fundamental dimensions of American society showed marked differences by gender, but gender suddenly dropped out of the equation when people became desperate enough to seek a physician's help in ending their lives. What sort of gender effects might we expect? There are four different possibilities. First, we might anticipate a higher incidence of women than men dying by physician-assisted suicide and euthanasia in this country. This is an empirical claim that we cannot yet test; we currently lack good data in the face of the illegality of the practices in most states5 and the condemnation of the organized medical profession.6 The best data we do have are from the Netherlands and are inconclusive. As I discuss below, the Dutch data show that women predominate among patients dying through euthanasia or administration of drugs for pain relief, but not by much. In the smaller categories of physician-assisted suicide and "life-terminating events without. . . request," however, men predominate. And men predominate too in making requests rejected by physicians. It is hard to say what this means for the United States. The Netherlands differs in a number of relevant respects, with universal health care and a more homogeneous society. But the Dutch data suggest that gender differences in the United States will not necessarily translate into higher numbers of women dying. At least one author speculates that there may in fact be a sexist tendency to discount and refuse women's requests.7 There may, however, be a second gender effect. Gender differences may translate into women seeking physician-assisted suicide and euthanasia for somewhat different reasons than men. Problems we know to be correlated with gender—difficulty getting good medical care generally, poor pain relief, a higher incidence of depression, and a higher rate of poverty—may figure more prominently in women's motivation. Society's persisting sexism may figure as well. And the long history of valorizing women's self-sacrifice may be expressed in women's requesting assisted suicide or euthanasia.

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The well-recognized gender differences in suicide statistics also suggest that women's requests for physician-assisted suicide and euthanasia may more often than men's requests be an effort to change an oppressive situation rather than a literal request for death. Thus some suicidologists interpret men's predominance among suicide "completers" and women's among suicide "attempters" to mean that women more often engage in suicidal behavior with a goal other than "completion."8 The relationship between suicide and the practices of physicianassisted suicide and euthanasia itself deserves further study; not all suicides are even motivated by terminal disease or other factors relevant to the latter practices. But the marked gender differences in suicidal behavior are suggestive. Third, gender differences may also come to the fore in physicians' decisions about whether to grant or refuse requests for assisted suicide or euthanasia. The same historical valorization of women's self-sacrifice and the same background sexism that may affect women's readiness to request may also affect physicians' responses. Physicians may be susceptible to affirming women's negative self-judgments. This might or might not result in physicians agreeing to assist; other genderrelated judgments (such as that women are too emotionally labile, or that their choices should not be taken seriously) may intervene.9 But the point is that gender may affect not just patient but physician. Finally, gender may affect the broad public debate. The prominent U.S. cases so far and related historical imagery suggest that in debating physician-assisted suicide and euthanasia, many in our culture may envision a woman patient. Although the AIDS epidemic has called attention to physician-assisted suicide and euthanasia in men, the cases that have dominated the news accounts and scholarly journals in the recent renewal of debate have featured women patients. Thus we have reason to be concerned that at least some advocacy for these practices may build on the sense that these stories of women's deaths are somehow "right." If there is a felt correctness to these accounts, that may be playing a hidden and undesirable part in catalyzing support for the practices' legitimation. Thus we have cause to worry whether the debate about and practice of physician-assisted suicide and euthanasia in this country are gendered in a number of respects. Serious attention to gender therefore seems essential. Before we license physicians to kill their patients or to assist patients in killing themselves, we had better understand the dynamic at work in that encounter, why the practice seems so alluring that we should court its dangers, and what dangers are likely to manifest. After all, the consequences of permitting killing or assistance in private encounters are serious, indeed fatal. We had better understand what distinguishes this from other forms of private violence, and other


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relationships of asymmetrical power that result in the deaths of women. And we had better determine whether tacit assumptions about gender are influencing the enthusiasm for legalization. Yet even that is not enough. Beyond analyzing the way gender figures in our cases, cultural imagery, and practice, we must analyze the substantive arguments. For attention to gender, in the last two decades particularly, has yielded a wealth of feminist critiques and theoretical tools that can fruitfully be brought to bear. After all, the debate over physician-assisted suicide and euthanasia revolves around precisely the kind of issues on which feminist work has focused: what it means to talk about rights of self-determination and autonomy; the reconciliation of those rights with physicians' duties of beneficence and caring; and how to place all of this in a context including the strengths and failures of families, professionals, and communities, as well as real differentials of power and resources. The debate over physician-assisted suicide and euthanasia so starkly raises questions of rights, caring, and context that at this point it would take determination not to bring to bear a literature that has been devoted to understanding those notions. Indeed, the work of Lawrence Kohlberg bears witness to what an obvious candidate this debate is for such analysis.10 It was Kohlberg's work on moral development, of course, that provoked Carol Gilligan's In A Different Voice, criticizing Kohlberg's vision of progressive stages in moral maturation as one that was partial and gendered.11 Gilligan proposed that there were really two different approaches to moral problems, one that emphasized generalized rights and universal principles, and the other that instead emphasized contextualized caring and the maintenance of particular human relationships. She suggested that although women and men could use both approaches, women tended to use the latter and men the former. Both approaches, however, were important to moral maturity. Though Gilligan's and others' work on the ethics of care has been much debated and criticized, a number of bioethicists and health care professionals have found a particular pertinence to questions of physician caregiving.12 Embedded in Kohlberg's work, one finds proof that the euthanasia debate in particular calls for analysis in the very terms that he employs, and that Gilligan then critiques, enlarges, and reformulates. For one of the nine moral dilemmas Kohlberg used to gauge subjects' stage of moral development was a euthanasia problem. "Dilemma IV" features "a woman" with "very bad cancer" and "in terrible pain." Her physician, Dr. Jefferson, knows she has "only about six months to live." Between periods in which she is "delirious and almost crazy with pain," she asks the doctor to kill her with morphine. The question is what he should do.13

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The euthanasia debate thus demands analysis along the care, rights, and context axes that the Kohlberg-Gilligan debate has identified.14 Kohlberg himself used this problem to reveal how well respondents were doing in elevating general principles over the idiosyncrasies of relationship and context. It is no stretch, then, to apply the fruits of more than a decade of feminist critique. The problem has a genuine pedigree. The purpose of this chapter thus is twofold. First, I explore gender's significance for analyzing physician-assisted suicide and euthanasia. Thus I examine the prominent cases and cultural images, against the background of cautions recommended by what little data we have from the Netherlands. Finding indications that gender may well be significant, I investigate what that implies for the debate over physicianassisted suicide and euthanasia. Clearly more research is required. But in the meantime, patients' vulnerability to requesting these fatal interventions because of failures in health care and other background conditions, or because of a desire not to die but to alter circumstances, introduces reasons why we should be reluctant to endorse these practices. Indeed, we should be worried about the role of the physician in these cases, and consider the lessons we have learned from analyzing other relationships that result in women's deaths. What we glean from looking at gender should lead us to look at other characteristics historically associated with disadvantage, and thus should prompt a general caution applicable to all patients. My second purpose is to go beyond analysis of gender itself, to analysis of the arguments offered on whether to condone and legitimate these practices. Here is where I bring to bear the feminist literature on caring, rights, and context. I criticize the usual argument that patients' rights of self-determination dictate legitimation of physician-assisted suicide and euthanasia, on the grounds that this misconstrues the utility of rights talk for resolving this debate, and ignores essential features of the context. I then turn to arguments based on beneficence and caring. It is no accident that the word "mercy" has figured so large in our language about these problems; they do involve questions of compassion and caring. However, a shallow understanding of caring will lead us astray, and I go on to elaborate what a deep and contextualized understanding demands. I argue that physicians should be guided by a notion of "principled caring." Finally, I step back to suggest what a proper integration of rights and caring would look like in this context, how it can be coupled with attention to the fate of women and other historically disadvantaged groups, and what practical steps all of this counsels. This chapter takes a position. As I have before, I oppose the legitimation of physician-assisted suicide and euthanasia.15 Yet the most important part of what I do here is urge the necessity of feminist analysis of this issue. Physician-assisted suicide and euthanasia are difficult problems on which people may disagree. But I hope to persuade that


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attending to gender and feminist concerns in analyzing these problems is no longer optional.

Gender in Cases, Images, and Practice The tremendous upsurge in American debate over whether to legitimate physician-assisted suicide and euthanasia in recent years has been fueled by a series of cases featuring women. The case that seems to have begun this series is that of Debbie, published in 1988 by the Journal of the American Medical Association (JAMA).16 JAMA published this now infamous, first-person, and anonymous account by a resident in obstetrics and gynecology of performing euthanasia. Some subsequently queried whether the account was fiction. Yet it successfully catalyzed an enormous response. The narrator of the piece tells us that Debbie is a young woman suffering from ovarian cancer. The resident has no prior relationship with her, but is called to her bedside late one night while on call and exhausted. Entering Debbie's room, the resident finds an older woman with her, but never pauses to find out who that second woman is and what relational context Debbie acts within. Instead, the resident responds to the patient's clear discomfort and to her words. Debbie says only one sentence, "Let's get this over with." It is unclear whether she thinks the resident is there to draw blood and wants that over with, or means something else. But on the strength of that one sentence, the resident retreats to the nursing station, prepares a lethal injection, returns to the room, and administers it. The story relates this as an act of mercy under the title "It's Over, Debbie," as if in caring response to the patient's words. The lack of relationship to the patient; the failure to attend to her own history, relationships, and resources; the failure to explore beyond the patient's presented words and engage her in conversation; the sense that the cancer diagnosis plus the patient's words demand death; and the construal of that response as an act of mercy are all themes that recur in the later cases. The equally infamous Dr. Jack Kevorkian has provided a slew of them. They begin with Janet Adkins, a 54-year-old Oregon woman diagnosed with Alzheimer's disease.17 Again, on the basis of almost no relationship with Ms. Adkins, on the basis of a diagnosis by exclusion that Kevorkian could not verify, prompted by a professed desire to die that is a predictable stage in response to a number of dire diagnoses, Kevorkian rigs her up to his "Mercitron" machine in a parking lot outside Detroit in what he presents as an act of mercy. Then there is Marjorie Wantz, a 58-year-old woman without even a diagnosis.18 Instead, she has pelvic pain whose source remains undetermined. By the time Kevorkian reaches Ms. Wantz, he is making little

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pretense of focusing on her needs in the context of a therapeutic relationship. Instead, he tells the press that he is determined to create a new medical specialty of "obitiatry." Ms. Wantz is among the first six potential patients with whom he is conferring. When Kevorkian presides over her death there is another woman who dies as well, Sherry Miller. Miller, 43, has multiple sclerosis. Thus neither woman is terminal. The subsequent cases reiterate the basic themes.19 And it is not until the ninth "patient" that Kevorkian finally presides over the death of a man.20 By this time, published criticism of the predominance of women had begun to appear.21 Kevorkian's actions might be dismissed as the bizarre behavior of one man. But the public and press response has been enormous, attesting to the power of these accounts. Many people have treated these cases as important to the debate over physician-assisted suicide and euthanasia. Nor are Kevorkian's cases so aberrant—they pick up all the themes that emerge in "Debbie." But we cannot proceed without analysis of Diane. This is the respectable version of what Kevorkian makes strange. I refer to the story published by Dr. Timothy Quill in the New England Journal of Medicine, recounting his assisting the suicide of his patient Diane.22 She is a woman in her forties diagnosed with leukemia, who seeks and obtains from Dr. Quill a prescription for drugs to take her life. Dr. Quill cures some of the problems with the prior cases. He does have a real relationship with her, he knows her history, and he obtains a psychiatric consult on her mental state. He is a caring, empathetic person. Yet once again we are left wondering about the broader context of Diane's life—why even the history of other problems that Quill describes has so drastically depleted her resources to deal with this one, and whether there were any alternatives. And we are once again left wondering about the physician's role—why he responded to her as he did, what self-scrutiny he brought to bear on his own urge to comply, and how he reconciled this with the arguments that physicians who are moved to so respond should nonetheless resist.23 These cases will undoubtedly be joined by others, including cases featuring men, as the debate progresses. Indeed, they already have been. Yet the initial group of cases involving women has somehow played a pivotal role in catalyzing reexamination of two of the most fundamental and long-standing prohibitions in medicine. These are prohibitions that have been deemed by some constitutive of the physician's role: above all, do no harm; and give no deadly drug, even if asked. The power of this core of cases seems somehow evident. This collection of early cases involving women cries out for analysis. It cannot be taken as significant evidence predicting that more women may die through physician-assisted suicide and euthanasia; these individual cases are no substitute for systematic data. But to understand


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what they suggest about the role of gender, we need to place them in context. The images in these cases have a cultural lineage. We could trace a long history of portrayals of women as victims of sacrifice and selfsacrifice. In Greek tragedy, that ancient source of still reverberating images, "suicide . . . [is] a woman's solution."24 Almost no men die in this way. Specifically, suicide is a wife's solution; it is one of the few acts of autonomy open to her. Wives use suicide in these tragedies often to join their husbands in death. The other form of death specific to women is the sacrifice of young women who are virgins. The person putting such a woman to death must be male.25 Thus "[i]t is by men that women meet their death, and it is for men, usually, that they kill themselves."26 Men, in contrast, die by the sword or spear in battle.27 The connection between societal gender roles and modes of death persists through history. Howard Kushner writes that "Nineteenthcentury European and American fiction is littered with the corpses of ... women. . . . [T]he cause was always . . . rejection after an illicit love affair. ... If women's death by suicide could not be attributed to dishonor, it was invariably tied to women's adopting roles . . . assigned to men."28 "By the mid-nineteenth century characterizations of women's suicides meshed with the ideology described by Barbara Welter as that of True Womanhood. . . . ' Adherence to the virtues of 'piety, purity, submissiveness and domesticity' translated into the belief that 'a "fallen woman" was a "fallen angel.". . . 29 Even after statistics emerged showing that women completed suicide less often than men, the explanations offered centered on women's supposedly greater willingness to suffer misfortune, their lack of courage, and less arduous social role.30 Thus, prevailing values have imbued women's deaths with specific meaning. Indeed, Carol Gilligan builds on images of women's suicides and sacrifice in novels and drama, as well as on her own data, in finding a psychology and even an ethic of self-sacrifice among women. Gilligan finds one of the "conventions of femininity" to be "the moral equation of goodness with self-sacrifice."31 "[V]irtue for women lies in self-sacrifice. . . . "32 Given this history of images and the valorization of women's selfsacrifice, it should come as no surprise that the early cases dominating the debate about self-sacrifice through physician-assisted suicide and euthanasia have been cases of women. In Greek tragedy only women were candidates for sacrifice and self-sacrifice,33 and to this day selfsacrifice is usually regarded as a feminine not masculine virtue. This lineage has implications. It means that even while -we debate physician-assisted suicide and euthanasia rationally, we may be animated by unacknowledged images that give the practices a certain gendered logic and felt correctness. In some deep way it makes sense to

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us to see these women dying, it seems right. It fits an old piece into a familiar, ancient puzzle. Moreover, these acts seem good; they are born of virtue. We may not recognize that the virtues in question—female sacrifice and self-sacrifice—are ones now widely questioned and deliberately rejected. Instead, our subconscious may harken back to older forms, reembracing those ancient virtues, and thus lauding these women's deaths. Analyzing the early cases against the background of this history also suggests hidden gender dynamics to be discovered by attending to the facts found in the accounts of these cases, or more properly the facts not found. What is most important in these accounts is what is left out, how truncated they are. We see a failure to attend to the patient's context, a readiness on the part of these physicians to facilitate death, a seeming lack of concern over why these women turn to these doctors for deliverance. A clue about why we should be concerned about each of these omissions is telegraphed by data from exit polls on the day Californians defeated a referendum measure to legalize active euthanasia. Those polls showed support for the measure lowest among women, older people, Asians, and African Americans, and highest among younger men with postgraduate education and incomes over $75,000 per year.34 The New York Times analysis was that people from more vulnerable groups were more worried about allowing physicians actively to take life. This may suggest concern not only that physicians may be too ready to take their lives, but also that these patients may be markedly vulnerable to seeking such relief. Why would women, in particular, feel this? Women are at greater risk for inadequate pain relief.35 Indeed, fear of pain is one of the reasons most frequently cited by Americans for supporting legislation to legalize euthanasia.36 Women are also at greater risk for depression.37 And depression appears to underlie numerous requests for physician-assisted suicide and euthanasia.38 These factors suggest that women may be differentially driven to consider requesting both practices. That possibility is further supported by data showing systematic problems for women in relationship to physicians. As an American Medical Association report on gender disparities recounts, women receive more care even for the same illness, but the care is generally worse. Women are less likely to receive dialysis, kidney transplants, cardiac catheterization, and diagnostic testing for lung cancer. The report urges physicians to uproot "social or cultural biases that could affect medical care" and "presumptions about the relative worth of certain social roles."39 This all occurs against the background of a deeply flawed health care system that ties health insurance to employment. Men are differentially represented in the ranks of those with private health insurance,


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women in the ranks of the others—those either on government entitlement programs or uninsured.40 In the U.S. two-tier health care system, men dominate in the higher-quality tier, women in the lower. Moreover, women are differentially represented among the ranks of the poor. Many may feel they lack the resources to cope with disability and disease. To cope with Alzheimer's, breast cancer, multiple sclerosis, ALS, and a host of other diseases takes resources. It takes not only the financial resource of health insurance, but also access to stable working relationships with clinicians expert in these conditions, in the psychological issues involved, and in palliative care and pain relief. It may take access to home care, eventually residential care, and rehabilitation services. These are services often hard to get even for those with adequate resources, and almost impossible for those without. And who are those without in this country? Disproportionately they are women, people of color, the elderly, and children.41 Women may also be driven to consider physician-assisted suicide or euthanasia out of fear of otherwise burdening their families.42 The dynamic at work in a family in which an ill member chooses suicide or active euthanasia is worrisome. This worry should increase when it is a woman who seeks to "avoid being a burden," or otherwise solve the problem she feels she poses, by opting for her own sacrifice. The history and persistence of family patterns in this country in which women are expected to adopt self-sacrificing behavior for the sake of the family may pave the way too for the patient's request for death. Women requesting death may also be sometimes seeking something other than death. The dominance of women among those attempting but not completing suicide in this country suggests that women may differentially engage in death-seeking behavior with a goal other than death. Instead, they may be seeking to change their relationships or circumstances.43 A psychiatrist at Harvard has speculated about why those women among Kevorkian's "patients" who were still capable of killing themselves instead sought Kevorkian's help. After all, suicide has been decriminalized in this country, and step-by-step instructions are readily available. The psychiatrist was apparently prompted to speculate by interviewing about twenty physicians who assisted patients' deaths and discovering that two-thirds to three-quarters of the patients had been women. The psychiatrist wondered whether turning to Kevorkian was a way to seek a relationship.44 The women also found a supposed "expert" to rely upon, someone to whom they could yield control. But then we must wonder what circumstances, what relational context, led them to this point. What I am suggesting is that there are issues relating to gender left out of the accounts of the early prominent cases of physician-assisted suicide and euthanasia or left unexplored that may well be driving or limiting the choices of these women. I am not suggesting that we

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should denigrate these choices or regard them as irrational. Rather, it is the opposite—that we should assume these decisions to be rational and grounded in a context. That forces us to attend to the background failures in that context. Important analogies are offered by domestic violence. Such violence has been increasingly recognized as a widespread problem. It presents some structural similarities to physician-assisted suicide and especially active euthanasia. All three can be fatal. All three are typically acts performed behind closed doors. In the United States, all three are illegal in most jurisdictions, though the record of law enforcement on each is extremely inconsistent. Though men may be the victims and women the perpetrators of all three, in the case of domestic violence there are some conceptions of traditional values and virtues that endorse the notion that a husband may beat his wife. As I have suggested above, there are similarly traditional conceptions of feminine self-sacrifice that might bless a physician's assisting a woman's suicide or performing euthanasia. Clearly, there are limits to the analogy. But my point is that questions of choice and consent have been raised in the analysis of domestic violence against women, much as they have in the case of physician-assisted suicide and active euthanasia. If a woman chooses to remain in a battering relationship, do we regard that as a choice to be respected and reason not to intervene? While choosing to remain is not consent to battery, what if a woman says that she "deserves" to be beaten-do we take that as reason to condone the battering? The answers that have been developed to these questions are instructive, because they combine respect for the rationality of women's choices with a refusal to go the further step of excusing the batterer. We appreciate now that a woman hesitating to leave a battering relationship may have ample and rational reasons: well-grounded fear for her safety and that of her children, a justified expectation of economic distress, and warranted concern that the legal system will not effectively come to her aid. We further see mental health professionals now uncovering some of the deeper reasons why some women might say at some point they "deserve" violence. Taking all of these insights seriously has led to development of a host of new legal, psychotherapeutic, and other interventions meant to address the actual experiences and concerns that might lead women to "choose" to stay in a violent relationship or "choose" violence against them. Yet none of this condones the choice of the partner to batter or, worse yet, kill the woman. Indeed, the victim's consent, we should recall, is no legal defense to murder. All of this should suggest that in analyzing why women may request physician-assisted suicide and euthanasia, and why indeed the California polls indicate that women may feel more vulnerable to and


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wary of making that request, we have insights to bring to bear from other realms. Those insights render suspect an analysis that merely asserts women are choosing physician-assisted suicide and active euthanasia, without asking why they make that choice. The analogy to other forms of violence against women behind closed doors demands that we ask why the woman is there, what features of her context brought her there, and why she may feel there is no better place to be. Finally, the analogy counsels us that the patient's consent does not resolve the question of whether the physician acts properly in deliberately taking her life through physician-assisted suicide or active euthanasia. The two people are separate moral and legal agents.45 This leads us from consideration of why women patients may feel vulnerable to these practices, to the question of whether physicians may be vulnerable to regarding women's requests for physicianassisted suicide and euthanasia somewhat differently from men's. There may indeed be gender-linked reasons for physicians in this country to say "yes" to women seeking assistance in suicide or active euthanasia. In assessing whether the patient's life has become "meaningless," or a "burden," or otherwise what some might regard as suitable for extinguishing at her request, it would be remarkable if the physician's background views did not come into play on what makes a woman's life meaningful or how much of a burden on her family is too much.46 Second, there is a dynamic many have written about operating between the powerful expert physician and the woman surrendering to his care.47 It is no accident that bioethics has focused on the problem of physician paternalism. Instead of an egalitarianism or what Susan Sherwin calls "amicalism,"48 we see a vertically hierarchical arrangement built on domination and subordination. When the patient is female and the doctor male, as is true in most medical encounters, the problem is likely to be exacerbated by the background realities and history of male dominance and female subjugation in the broader society. Then a set of psychological dynamics are likely to make the male physician vulnerable to acceding to the woman patient's request for active assistance in dying. These may be a complex combination of rescue fantasies49 and the desire to annihilate. Robert Burt talks about the pervasiveness of this ambivalence, quite apart from gender: "Rules governing doctor-patient relations must rest on the premise that anyone's wish to help a desperately pained, apparently helpless person is intertwined with a wish to hurt that person, to obliterate him from sight."50 When the physician is from a dominant social group and the patient from a subordinate one, we should expect the ambivalence to be heightened. When the "help" requested is obliteration, the temptation to enact both parts of the ambivalence in a single act may be great.

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This brief examination of the vulnerability of women patients and their physicians to collaboration on actively ending the woman's life in a way reflecting gender roles suggests the need to examine the woman's context and where her request for death comes from, the physician's context and where his accession comes from, and the relationship between the two. We need to do that in a way that uses rather than ignores all we know about the issues plaguing the relations between women and men, especially suffering women and powerful expert men. The California exit polls may well signal both the attraction and the fear of enacting the familiar dynamics in a future in which it is legitimate to pursue that dynamic to the death. It would be implausible to maintain that medicine is somehow exempt from broader social dynamics. The question, then, is whether we want to bless deaths driven by those dynamics. All of this suggests that physician-assisted suicide and euthanasia, as well as the debate about them, may be gendered. I have shown ways in which this may be true even if women do not die in greater numbers. But exploring gender would be incomplete without examining what data we have on its relationship to incidence. As noted above, those data, which are from the Netherlands, neither support the proposition that more women will die from these practices, nor provide good reason yet to dismiss the concern. We simply do not know how these practices may play out by gender in the United States. There is no good U.S. data, undoubtedly because these practices remain generally illegal.51 And the Dutch data come from another culture, with a more homogeneous population, a different health care system providing universal coverage, and perhaps different gender dynamics.52 The status of physician-assisted suicide and euthanasia in the Netherlands is complex. Both practices remain criminal, but both are tolerated under a series of court decisions, guidelines from the Dutch medical association, and a more recent statute that carve out a domain in which the practices are accepted. If the patient is competent and contemporaneously requests assisted suicide or euthanasia, the patient's suffering cannot be relieved in any other way acceptable to the patient, a second physician concurs that acceding to the request is appropriate, and the physician performing the act reports it to permit monitoring and investigation, then the practices are allowed. Dutch researchers have been reporting rigorous empirical research on the practices only in the past several years.53 The team led by Dr. Paul van der Maas and working at governmental request published the first results of their nationwide study in 1991.54 They found that "medical decisions concerning the end of life (MDEL)" were made in 38 percent of all deaths in the Netherlands, and thus were common. They


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differentiated five different types of MDEL's: non-treatment decisions (which are neither physician-assisted suicide nor active euthanasia) caused 17.5 percent of deaths; administration of opiod drugs for pain and symptomatic relief (which would be considered active euthanasia in the United States if the physician's intent were to end life, rather than simply to relieve pain or symptoms with the foreseeable risk of hastening death) accounted for another 17.5 percent; active euthanasia at the patient's request (excluding the previous category) accounted for 1.8 percent; physician-assisted suicide (in which the patient, not physician, administers the drugs) covered 0.3 percent. Finally, there was a category of "life-terminating events without explicit and persistent request" accounting for 0.8 percent. In more than half of these cases, the patient had expressed a desire for euthanasia previously, but was no longer able to communicate by the time a decision had to be made and effectuated. Women predominated in all of these categories except for the two rarest, but not by a great deal.55 Thus, the ratio of females to males is 52:48 for euthanasia,56 the same for death from drugs for pain and symptomatic relief, and 55:45 for non-treatment decisions.57 This is against a background ratio of 48:52 for all deaths in the Netherlands.58 However, in the much smaller categories of physician-assisted suicide and "life-terminating events without explicit and persistent request," men predominated by 68:32 and 65:35 respectively.59 Why would men predominate in these two categories? In the case of physician-assisted suicide, the researchers suggest that we are talking about younger, urbanized males who have adopted a more demanding style as patients60 and may be seeking control.61 Perhaps women, in contrast, are more often surrendering to their fate and relinquishing control to the physicians whom they ask to take their lives. Unfortunately, the researchers do not venture an explanation of why males predominate in the category of people who die from "life-terminating events without explicit and persistent request." This is numerically the smallest category, and one that should not occur at all under the Dutch guidelines because these are not contemporaneously competent patients articulating a request. Thus the numbers may be particularly unreliable here, if there is reluctance to report this illicit activity. Finally, the researchers report that more males than females made requests for physician-assisted suicide and euthanasia that physicians refused (55:45).62 What can we learn from the Dutch data that is relevant to the United States? There are causes for caution in making the cross-cultural comparison. There may be fewer reasons to expect a gender difference in the Dutch practices of euthanasia and physician-assisted suicide (as we would define these terms, that is, including the administration of drugs for pain relief and palliation, when the physician's purpose is to

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end life). First, the Netherlands provides universal health care coverage, while the United States's failure to provide universal coverage and tolerance of a two-tier health care system differentially disadvantages women (and other historically oppressed groups), leaving them with fewer means to cope with serious illness and more reason to consider seeking death. Second, the Netherlands presents greater homogeneity in race and ethnicity.63 Again, this means that the United States presents more opportunities for and history of oppression based on difference. Third, we have to wonder whether elderly women in the United States face more difficulties and thus more reason to consider physician-assisted suicide and euthanasia than those in the Netherlands. A significant number in the United States confront lack of financial resources and difficulties associated with the absence of universal health coverage. Older women in the United States may also find themselves disvalued. "[T]here is evidence that the decision to kill oneself is viewed as most 'understandable' when it is made by an older woman."64 Finally, it is worth speculating whether gender dynamics differ in the Netherlands. Apart from that speculation, the differences in Dutch demographics and health care would be reasons to expect no gender differential in the Netherlands in the practices we are examining. The fact that we nonetheless see something of a gender difference in the case of most deaths intentionally caused by a physician at the patient's request should heighten our concern about gender differences in the United States. Given the general illegality of euthanasia and physician-assisted suicide currently in this country, decent data would be difficult to gather. Yet there seems to be reason to attend to gender in what studies we can do, and in our analysis of these problems. Studies planned for Oregon, the one American jurisdiction to legalize physician-assisted suicide so far, should surely investigate gender. Attending to gender in the data available from the Netherlands, in the images animating the American debate, and in the cases yielding those images thus suggests that our customarily gender-neutral arguments about the merits of physician-assisted suicide and euthanasia miss much of the point. Though one can certainly conceive of a gender-neutral practice, that may be far from what we have, at least in the United States, with our history and inequalities. Equally troubling, our failure thus far to attend to gender in debating these practices may represent more than mere oversight. It may be a product of the same deep-rooted sexism that makes the self-destruction of women in Greek tragedy seem somehow natural and right. Indeed, there is something systematic in our current submerging of gender. The details left out of the usual account of a case of assisted suicide or euthanasia—what failures of relationship, context, and resources have


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brought the woman to this point; precisely why death seems to her the best remaining option; what elements of self-sacrifice motivate her choice—are exactly the kind of details that might make the workings of gender visible. They are also the kind of details that might make the workings of race, ethnicity, and insurance status visible as well. The sort of gender analysis that I have pursued here should also provoke us to other analyses of the role played by these other factors. To focus here on just the first of these, there is a long history of racism in medicine in this country, as vividly demonstrated by the horrors of the Tuskegee Syphilis Study.65 We now are seeing new studies showing a correlation between race and access to cardiac procedures, for instance.66 Although analysis of the meaning of these correlations is in progress, we have ample reason to be concerned, to examine the dynamic at work between patients of color and their physicians, and to be wary of expanding the physician's arsenal so that he or she may directly take the patient's life. This sort of analysis will have to be detailed and specific, whether exploring gender, race, or another historic basis for subordination. The cultural meaning, history, and medical profession's use of each of those categories is specific, even though we can expect commonalities. The analysis will also have to pay close attention to the intersection, when a patient presents multiple characteristics that have historically occasioned discrimination and disadvantage.67 How all of these categories function in the context of physician-assisted suicide and euthanasia will bear careful examination. Probably the category of gender is the one we actually know most about in that context. At least we have the most obvious clues about that category, thanks to the gendered nature of the imagery. We would be foolish not to pursue those clues. Indeed, given grounds for concern that physician-assisted suicide and euthanasia may work in different and troubling ways when the patient is a woman, we are compelled to investigate gender.

Feminism and the Arguments Shifting from the images and stories that animate debate and the dynamics operating in practice to analysis of the arguments over physician-assisted suicide and euthanasia takes us further into the concerns of feminist theory. Arguments in favor of these practices have often depended on rights claims. More recently, some authors have grounded their arguments instead on ethical concepts of caring. Yet both argumentative strategies have been flawed in ways that feminist work can illuminate. What is missing is an analysis that integrates notions of physician caring with principled boundaries to physician ac-

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tion, while also attending to the patient's broader context and the community's wider concerns. Such an analysis would pay careful attention to the dangers posed by these practices to the historically most vulnerable populations, including women. Advocacy of physician-assisted suicide and euthanasia has hinged to a great extent on rights claims. The argument is that the patient has a right of self-determination or autonomy that entitles her to assistance in suicide or euthanasia. The strategy is to extend the argument that self-determination entitles the patient to refuse unwanted lifesustaining treatment by maintaining that the same rationale supports patient entitlement to more active physician assistance in death. Indeed, it is sometimes argued that there is no principled difference between termination of life-sustaining treatment and the more active practices. The narrowness and mechanical quality of this rights thinking, however, is shown by its application to the stories recounted above. That application suggests that the physicians in these stories are dealing with a simple equation: given an eligible rights bearer and her assertion of the right, the correct result is death. What makes a person an eligible rights bearer? Kevorkian seems to require neither a terminal disease nor thorough evaluation of whether the patient has non-fatal alternatives. Indeed, the Wantz case shows he does not even require a diagnosis. Nor does the Oregon physician-assisted suicide statute require evaluation or exhaustion of non-fatal alternatives; a patient could be driven by untreated pain, and still receive physician-assisted suicide. And what counts as an assertion of the right? For Debbie's doctor, merely "Let's get this over with." Disease plus demand requires death. Such a rights approach raises a number of problems that feminist theory has illuminated. I should note that overlapping critiques of rights have been offered by Critical Legal Studies,68 Critical Race Theory,69 and some communitarian theory.70 Thus some of these points would be echoed by those critiques.71 Yet as will be seen, feminist theory offers ways to ground evaluation of rights and rights talk72 in the experiences of women. In particular, feminist critiques suggest three different sorts of problems with the rights equation offered to justify physician-assisted suicide and euthanasia. First, it ignores context, both the patient's present context and her history. The prior and surrounding failures in her intimate relationships, in her resources to cope with illness and pain, and even in the adequacy of care being offered by the very same physician fade into invisibility next to the bright light of a rights bearer and her demand. In fact, her choices may be severely constrained. Some of those constraints may even be alterable or removable. Yet attention to


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those dimensions of decision is discouraged by the absolutism of the equation: either she is an eligible rights bearer or not; either she has asserted her right or not. There is no room for conceding her competence and request, yet querying whether under all the circumstances her choices are so constrained and alternatives so unexplored that acceding to the request may not be the proper course. Stark examples are provided by cases in which pain or symptomatic discomfort drives a person to request assisted suicide or euthanasia, yet the pain or discomfort are treatable. A number of Kevorkian's cases raise the problem as well: Did Janet Adkins ever receive psychological support for the predictable despair and desire to die that follow dire diagnoses such as Alzheimer's? Would the cause of Marjorie Wantz's undiagnosed pelvic pain been ascertainable and even ameliorable at a better health center? In circumstances in which women and others who have traditionally lacked resources and experienced oppression are likely to have fewer options and a tougher time getting good care, mechanical application of the rights equation will authorize their deaths even when less drastic alternatives are or should be available. It will wrongly assume that all face serious illness and disability with the resources of the idealized rights bearer—a person of means untroubled by oppression. The realities of women and others whose circumstances are far from that abstraction's will be ignored. Second, in ignoring context and relationship, the rights equation extols the vision of a rights bearer as an isolated monad and denigrates actual dependencies. Thus it may be seen as improper to ask what family, social, economic, and medical supports she is or is not getting; this insults her individual self-governance. Nor may it be seen as proper to investigate alternatives to acceding to her request for death; this too dilutes self-rule. Yet feminists have reminded us of the actual embeddedness of persons and the descriptive falseness of a vision of each as an isolated individual.73 In addition, they have argued normatively that a society comprised of isolated individuals, without the pervasive connections and dependencies that we see, would be undesirable.74 Indeed, the very meaning of the patient's request for death is socially constructed; that is the point of the prior section's review of the images animating the debate. If we construe the patient's request as a rights bearer's assertion of a right and deem that sufficient grounds on which the physician may proceed, it is because we choose to regard background failures as irrelevant even if they are differentially motivating the requests of the most vulnerable. We thereby avoid real scrutiny of the social arrangements, governmental failures, and health coverage exclusions that may underlie these requests. We also ignore the fact that these patients may be seeking improved circumstances more than death. We elect a myopia that makes the patient's

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request and death seem proper. We construct a story that clothes the patient's terrible despair in the glorious mantle of "rights." Formulaic application of the rights equation in this realm thus exalts an Enlightenment vision of autonomy as self-governance and the exclusion of interfering others. Yet as feminists such as Jennifer Nedelsky have argued, this is not the only vision of autonomy available.75 She argues that a superior vision of autonomy is to be found by rejecting "the pathological conception of autonomy as boundaries against others," a conception that takes the exclusion of others from one's property as its central symbol. Instead, "If we ask ourselves what actually enables people to be autonomous, the answer is not isolation but relationships . . . that provide the support and guidance necessary for the development and experience of autonomy." Nedelsky thus proposes that the best "metaphor for autonomy is not property, but childrearing. There we have encapsulated the emergence of autonomy through relationship with others."76 Martha Minow, too, presents a vision of autonomy that resists the isolation of the self, and instead tries to support the relational context in which the rights bearer is embedded.77 Neither author counsels abandonment of autonomy and rights. But they propose fundamental revisions that would rule out the mechanical application of a narrow rights equation that would regard disease or disability, coupled with demand, as adequate warrant for death.78 In fact, there are substantial problems with grounding advocacy for the specific practices of physician-assisted suicide and euthanasia in a rights analysis, even if one accepts the general importance of rights and self-determination. I have elsewhere argued repeatedly for an absolute or near-absolute moral and legal right to be free of unwanted life-sustaining treatment.79 Yet the negative right to be free of unwanted bodily invasion does not imply an affirmative right to obtain bodily invasion (or assistance with bodily invasion) for the purpose of ending your own life. Moreover, the former right is clearly grounded in fundamental entitlements to liberty, bodily privacy, and freedom from unconsented touching; in contrast there is no clear "right" to kill yourself or be killed. Suicide has been widely decriminalized, but decriminalizing an act does not mean that you have a positive right to do it and to command the help of others. Indeed, if a friend were to tell me that she wished to kill herself, I would not be lauded for giving her the tools. In fact, that act of assistance has not been decriminalized. That continued condemnation shows that whatever my friend's relation to the act of suicide (a "liberty," "right," or neither), it does not create a right in her sufficient to command or even permit my aid. There are even less grounds for concluding that there is a right to be killed deliberately on request, that is, for euthanasia. There are reasons


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why a victim's consent has traditionally been no defense to an accusation of homicide. One reason is suggested by analogy to Mill's famous argument that one cannot consent to one's own enslavement: "The reason for not interfering . . . with a person's voluntary acts, is consideration for his liberty. . . . But by selling himself for a slave, he abdicates his liberty; he foregoes any future use of it. ... "80 Similarly, acceding to a patient's request to be killed wipes out the possibility of her future exercise of her liberty. The capacity to command or permit another to take your life deliberately, then, would seem beyond the bounds of those things to which you have a right grounded in notions of liberty. We lack the capacity to bless another's enslavement of us or direct killing of us. How is this compatible then with a right to refuse life-sustaining treatment? That right is not grounded in any so-called "right to die," however frequently the phrase appears in the general press.81 Instead, it is grounded in rights to be free of unwanted bodily invasion, rights so fundamental that they prevail even when the foreseeable consequence is likely to be death. Finally, the rights argument in favor of physician-assisted suicide and euthanasia confuses two separate questions: what the patient may do, and what the physician may do. After all, the real question in these debates is not what patients may request or even do. It is not at all infrequent for patients to talk about suicide and request assurance that the physician will help or actively bring on death when the patient wants;82 that is an expected part of reaction to serious disease and discomfort. The real question is what the doctor may do in response to this predictable occurrence. That question is not answered by talk of what patients may ask; patients may and should be encouraged to reveal everything on their minds. Nor is it answered by the fact that decriminalization of suicide permits the patient to take her own life. The physician and patient are separate moral agents. Those who assert that what a patient may say or do determines the same for the physician, ignore the physician's separate moral and legal agency. They also ignore the fact that she is a professional, bound to act in keeping with a professional role and obligations. They thereby avoid a necessary argument over whether the historic obligations of the physician to "do no harm" and "give no deadly drug even if asked" should be abandoned.83 Assertion of what the patient may do does not resolve that argument. The inadequacy of rights arguments to legitimate physician-assisted suicide and euthanasia has led to a different approach, grounded on physicians' duties of beneficence. This might seem to be quite in keeping with feminists' development of an ethics of care.84 Yet the beneficence argument in the euthanasia context is a strange one, because it asserts that the physician's obligation to relieve suffering permits or even commands her to annihilate the person who is experiencing the

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suffering. Indeed, at the end of this act of beneficence, no patient is left to experience its supposed benefits. Moreover, this argument ignores widespread agreement that fears of patient addiction in these cases should be discarded, physicians may sedate to unconsciousness, and the principle of double effect permits giving pain relief and palliative care in doses that risk inducing respiratory depression and thereby hastening death. Given all of that, it is far from clear what patients remain in the category of those whose pain or discomfort can only be relieved by killing them. Thus this argument that a physician should provide so much "care" that she kills the patient is deeply flawed. A more sophisticated version, however, is offered by Howard Brody.85 He acknowledges that both the usual rights arguments and traditional beneficence arguments have failed. Thus he claims to find a middle path. He advocates legitimation of physician-assisted suicide and euthanasia "as a compassionate response to one sort of medical failure," namely, medical failure to prolong life, restore function, or provide effective palliation. Even in such cases, he does not advocate the creation of a rule providing outright legalization. Instead, "compassionate and competent medical practice" should serve as a defense in a criminal proceeding.86 Panels should review the practice case by case; a positive review should discourage prosecution. There are elements of Brody's proposal that seem quite in keeping with much feminist work: his rejection of a binary either-or analysis, his skepticism that a broad rule will yield a proper resolution, his requirement instead of a case-by-case approach. Moreover, the centrality that he accords to "compassion" again echoes feminist work on an ethics of care. Yet ultimately he offers no real arguments for extending compassion to the point of killing a patient, for altering the traditional boundaries of medical practice, or for ignoring the fears that any legitimation of these practices will start us down a slippery slope leading to bad consequences. Brody's is more the proposal of a procedure—what he calls "not resolution but adjudication," following philosopher Hilary Putnam—than it is a true answer to the moral and legal quandaries. What Brody's analysis does accomplish, however, is that it suggests that attention to method is a necessary, if not sufficient, part of solving the euthanasia problem. Thus we find that two of the most important current debates in bioethics are linked—the debate over euthanasia and the debate over the proper structure of bioethical analysis and method.87 The inadequacies of rights arguments to establish patient entitlement to assisted suicide and euthanasia are linked to the inadequacies of a "top-down" or deductive bioethics driven by principles, abstract theories, or rules. They share certain flaws: both seem overly to ignore context and the nuances of cases; their simple abstractions


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overlook real power differentials in society and historic subordination; and they avoid the fact that these principles, rules, abstractions, and rights are themselves a product of historically oppressive social arrangements. Similarly, the inadequacies of beneficence and compassion arguments are linked to some of the problems with a "bottomup" or inductive bioethics built on cases, ethnography, and detailed description. In both instances it is difficult to see where the normative boundaries lie, and where to get a normative keel for the finely described ship. What does feminism have to offer these debates? Feminists too have struggled extensively with the question of method, with how to integrate detailed attention to individual cases with rights, justice, and principles. Thus in criticizing Kohlberg and going beyond his vision of moral development, Carol Gilligan argued that human beings should be able to utilize both an ethics of justice and an ethics of care. "To understand how the tension between responsibilities and rights sustains the dialectic of human development is to see the integrity of two disparate modes of experience that are in the end connected. . . . In the representation of maturity, both perspectives converge. . . , "88 What was less clear was precisely how the two should fit together. And unfortunately for our purposes, Gilligan never took up Kohlberg's mercy killing case to illuminate a care perspective or even more importantly, how the two perspectives might properly be interwoven in that case. That finally, I would suggest, is the question. Here we must look to those feminist scholars who have struggled directly with how the two perspectives might fit. Lawrence Blum has distinguished eight different positions that one might take, and that scholars have taken, on "the relation between impartial morality and a morality of care:"89 (1) acting on care is just acting on complicated moral principles; (2) care is not moral but personal; (3) care is moral but secondary to principle and generally adds mere refinements or supererogatory opportunities; (4) principle supplies a superior basis for moral action by ensuring consistency; (5) care morality concerns evaluation of persons while principles concern evaluation of acts; (6) principles set outer boundaries within which care can operate; (7) the preferability of a care perspective in some circumstances must be justified by reasoning from principles; and (8) care and justice must be integrated. Many others have struggled with the relationship between the two perspectives as well. Despite this complexity, the core insight is forthrightly stated by Owen Flanagan and Kathryn Jackson: "[T]he most defensible specification of the moral domain will include issues of both right and good."90 Martha Minow and Elizabeth Spelman go further. Exploring the axis of abstraction versus context, they argue against dichotomizing the two and in favor of recognizing their "constant interactions."91 Indeed,

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they maintain that a dichotomy misdescribes the workings of context. "[Cjontextualists do not merely address each situation as a unique one with no relevance for the next one. . . . The basic norm of fairness— treat like cases alike—is fulfilled, not undermined, by attention to what particular traits make one case like, or unlike, another."92 Similarly, "[w]hen a rule specifies a context, it does not undermine the commitment to universal application to the context specified; it merely identifies the situations to be covered by the rule."93 If this kind of integration is available, then why do we hear such urgent pleas for attention to context? "[T]he call to context in the late twentieth century reflects a critical argument that prevailing legal and political norms have used the form of abstract, general, and universal prescriptions while neglecting the experiences and needs of women of all races and classes, people of color, and people without wealth."94 Here we find the beginning of an answer to our dilemma. It appears that we must attend to both context and abstraction, peering through the lenses of both care and justice. Yet our approach to each will be affected by its mate. Our apprehension and understanding of context or cases inevitably involves categories, while our categories and principles should be refined over time to apply to some contexts and not others.95 Similarly, our understanding of what caring requires in a particular case will grow in part from our understanding of what sort of case this is and what limits principles set to our expressions of caring; while our principles should be scrutinized and amended according to their impact on real lives, especially the lives of those historically excluded from the process of generating principles.96 This last point is crucial and a distinctive feminist contribution to the debate over abstraction versus context, or in bioethics, principles versus cases. Various voices in the bioethics debate over method—be they advocating casuistry, specified principlism, principlism itself, or some other position—present various solutions to the question of how cases and principles or other higher-order abstractions should interconnect. Feminist writers too have substantive solutions to offer, as I have suggested. But feminists also urge something that the mainstream writers on bioethics method have overlooked altogether, namely, the need to use cases and context to reveal the systematic biases such as sexism and racism built into the principles or other abstractions themselves. Those biases will rarely be explicit in a principle. Instead, we will frequently have to look at how the principle operates in actual cases, what it presupposes (such as wealth or life options), and what it ignores (such as preexisting sexism or racism among the very health care professionals meant to apply it).97 What, then, does all of this counsel in application to the debate over


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physician-assisted suicide and euthanasia? This debate cannot demand a choice between abstract rules or principles and physician caring. Although the debate has sometimes been framed that way, it is difficult to imagine a practice of medicine founded on one to the exclusion of the other. Few would deny that physician beneficence and caring for the individual patient are essential. Indeed, they are constitutive parts of the practice of medicine as it has come to us through the centuries and aims to function today. Yet that caring cannot be unbounded. A physician cannot be free to do whatever caring for or empathy with the patient seems to urge in the moment. Physicians practice a profession with standards and limits, in the context of a democratic polity that itself imposes further limits.98 These considerations have led the few who have begun to explore an ethics of care for physicians to argue that the notion of care in that context must be carefully delimited and distinct from the more general caring of a parent for a child (although there are limits, too, on what a caring parent may do).99 Physicians must pursue what I will call "principled caring." This notion of principled caring captures the need for limits and standards, whether technically stated as principles or some other form of generalization. Those principles or generalizations will articulate limits and obligations in a provisional way, subject to reconsideration and possible amendment in light of actual cases. Both individual cases and patterns of cases may specifically reveal that generalizations we have embraced are infected by sexism or other bias, either as those generalizations are formulated or as they function in the world. Indeed, given that both medicine and bioethics are cultural practices in a society riddled by such bias and that we have only begun to look carefully for such bias in our bioethical principles and practices, we should expect to find it. Against this background, arguments for physician-assisted suicide and euthanasia—whether grounded on rights or beneficence—are automatically suspect when they fail to attend to the vulnerability of women and other groups. If our cases, cultural images, and perhaps practice differentially feature the deaths of women, we cannot ignore that. It is one thing to argue for these practices for the patient who is not so vulnerable, the wealthy white male living on Park Avenue in Manhattan who wants to add yet another means of control to his arsenal. It is quite another to suggest that the woman of color with no health care coverage or continuous physician relationship, who is given a dire diagnosis in the city hospital's emergency room, needs then to be offered direct killing. To institute physician-assisted suicide and euthanasia at this point in this country—in which many millions are denied the resources to cope with serious illness, in which pain relief and palliative care are by all

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accounts woefully mishandled, and in which we have a long way to go to make proclaimed rights to refuse life-sustaining treatment and to use advance directives working realities in clinical settings—seems, at the very least, to be premature. Were we actually to fix those other problems, we have no idea what demand would remain for these more drastic practices and in what category of patients. We know, for example, that the remaining category is likely to include very few, if any, patients in pain, once inappropriate fears of addiction, reluctance to sedate to unconsciousness, and confusion over the principle of double effect are overcome. Yet against those background conditions, legitimating the practices is more than just premature. It is a danger to women. Those background conditions pose special problems for them. Women in this country are differentially poorer, more likely to be either uninsured or on government entitlement programs, more likely to be alone in their old age, and more susceptible to depression. Those facts alone would spell danger. But when you combine them with the long (indeed, ancient) history of legitimating the sacrifice and self-sacrifice of women, the danger intensifies. That history suggests that a woman requesting assisted suicide or euthanasia is likely to be seen as doing the "right" thing. She will fit into unspoken cultural stereotypes.100 She may even be valorized for appropriate feminine self-sacrificing behavior, such as sparing her family further burden or the sight of an unaesthetic deterioration. Thus she may be subtly encouraged to seek death. At the least, her physician may have a difficult time seeing past the legitimating stereotypes and valorization to explore what is really going on with this particular patient, why she is so desperate, and what can be done about it. If many more patients in the Netherlands ask about assisted suicide and euthanasia than go through with it,101 and if such inquiry is a routine part of any patient's responding to a dire diagnosis or improperly managed symptoms and pain, then were the practices to be legitimated in the United States, we would expect to see a large group of patients inquiring. Yet given the differential impact of background conditions in the United States by gender and the legitimating stereotypes of women's deaths, we should also expect to see what has been urged as a neutral practice show marked gender effects. Is it possible to erect a practice that avoids this? No one has yet explained how. A recent article advocating the legitimation of physician-assisted suicide, for example, acknowledges the need to protect the vulnerable (though it never lists women among them).102 But none of the seven criteria it proposes to guide the practice involves deeply inquiring into the patient's life circumstances, whether she is alone, or whether she has health care coverage. Nor do the criteria


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require the physician to examine whether gender or other stereotypes are figuring in the physician's response to the patient's request. And the article fails to acknowledge the vast inequities and pervasive bias in social institutions that are the background for the whole problem. There is nothing in the piece that requires we remedy or even lessen those problems before these fatal practices begin. The required interweaving of principles and caring, combined with attention to the heightened vulnerability of women and others, suggests that the right answer to the debate over legitimating these practices is at least "not yet" in this grossly imperfect society and perhaps a flat "no." Beneficence and caring indeed impose positive duties upon physicians, especially with patients who are suffering, despairing, or in pain. Physicians must work with these patients intensively; provide first-rate pain relief, palliative care, and symptomatic relief; and honor patients' exercise of their rights to refuse life-sustaining treatment and use advance directives. Never should the patient's illness, deterioration, or despair occasion physician abandonment. Whatever concerns the patient has should be heard and explored, including thoughts of suicide, or requests for aid or euthanasia. Such requests should redouble the physician's efforts, prompt consultation with those more expert in pain relief or supportive care, suggest exploration of the details of the patient's circumstance, and a host of other efforts. What such requests should not do is prompt our collective legitimation of the physician's saying "yes" and actively taking the patient's life. The mandates of caring fail to bless killing the person for whom one cares. Any such practice in the United States will inevitably reflect enormous background inequities and persisting societal biases. And there are special reasons to expect gender bias to play a role. The principles bounding medical practice are not written in stone. They are subject to reconsideration and societal renegotiation over time. Thus the ancient prohibitions against physicians assisting suicide and performing euthanasia do not magically defeat proposals for change. (Nor do mere assertions that "patients want it" mandate change, as I have argued above.)103 But we ought to have compelling reasons for changing something as serious as the limits on physician killing, and to be rather confident that change will not mire physicians in a practice that is finally untenable. By situating assisted suicide and euthanasia in a history of women's deaths, by suggesting the social meanings that over time have attached to and justified women's deaths, by revealing the background conditions that may motivate women's requests, and by stating the obvious—that medicine does not somehow sit outside society, exempt from all of this—I have argued that we cannot have that confidence. More-

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over, in the real society in which we live, with its actual and for some groups fearful history, there are compelling reasons not to allow doctors to kill. We cannot ignore that such practice would allow what for now remains an elite and predominantly male profession to take the lives of the "other." We cannot explain how we will train the young physician both to care for the patient through difficult straits and to kill. We cannot protect the most vulnerable.

Conclusion Some will find it puzzling that elsewhere we seek to have women's voices heard and moral agency respected, yet here I am urging that physicians not accede to the request for assisted suicide and euthanasia. Indeed, as noted above, I have elsewhere maintained that physicians must honor patients' requests to be free of unwanted lifesustaining treatment. In fact, attention to gender and feminist argument would urge some caution in both realms. As Jay Katz has suggested, any patient request or decision of consequence merits conversation and exploration.104 And analysis by Steven Miles and Alison August suggests that gender bias may be operating in the realm of the termination of life-sustaining treatment too.105 Yet finally there is a difference between the two domains. As I have argued above, there is a strong right to be free of unwanted bodily invasion. Indeed, for women, a long history of being harmed specifically through unwanted bodily invasion such as rape presents particularly compelling reasons for honoring a woman's refusal of invasion and effort to maintain bodily intactness. When it comes to the question of whether women's suicides should be aided, however, or whether women should be actively killed, there is no right to command physician assistance, the dangers of permitting assistance are immense, and the history of women's subordination cuts the other way. Women have historically been seen as fit objects for bodily invasion, self-sacrifice, and death at the hands of others. The task before us is to challenge all three.106 Certainly some women, including some feminists, will see this problem differently. That may be especially true of women who feel in control of their lives, are less subject to subordination by age or race or wealth, and seek yet another option to add to their many. I am not arguing that women should lose control of their lives and selves. Instead, I am arguing that when women request to be put to death or ask help in taking their own lives, they become part of a broader social dynamic of which we have properly learned to be extremely wary. These are fatal practices. We can no longer ignore questions of gender or the insights of feminist argument.


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Notes My thanks to Arthur Applbaum, Larry Blum, Alta Charo, Norman Daniels, Johannes J. M. van Delden, Rebecca Dresser, Jorge Garcia, Henk ten Have, Warren Kearney, Elizabeth Kiss, Steven Miles, Christine Mitchell, Remco Oostendorp, Lynn Peterson, Dennis Thompson, and Alan Wertheimer for help at various stages, to the Texas Journal on Women and the Law at the University of Texas Law School for the opportunity to elicit comments on an earlier version, and to participants in the University of Minnesota Law School Faculty Workshop for valuable suggestions. Kent Spies and Terrence Dwyer of the University of Minnesota Law School provided important research assistance. Work on this chapter was supported in part by a Fellowship in the Program in Ethics and the Professions at Harvard University. 1. See, for example, Pamela Carroll, "Proponents of Physician-Assisted Suicide Continuing Efforts," ACP Observer, February 1992, p. 29 (describing state initiatives in Washington, California, Michigan, New Hampshire, and Oregon). Subsequently, Oregon voters made that state the first to legalize physician-assisted suicide. See 1995 Oregon Laws, Ch. 3, I. M. No. 16. But see also Lee V. Oregon, 869 F. Supp. 1491 (D. Or. 1994), entering an injunction preventing the statute from going into effect. Further legal proceedings will decide the statute's fate. For attempts to legalize physician-assisted suicide through litigation, see Compassion in Dying v. Washington, 850 F. Supp. 1454 (W.D. Wash. 1994), rev'd, 49 F.3d 586 (9th Cir. 1995); Quill v. Koppel, 870 F. Supp. 78 (S.D.N.Y. 1994). See also Hobbins v. Attorney General, 527 N.W.2d 714 (Mich. 1994). 2. See, for example, Howard Brody, "Assisted Death—A Compassionate Response to a Medical Failure," New England Journal of Medicine 327 (1992): 138488; Timothy E. Quill, Christine K. Cassel, and Diane E. Meier, "Care of the Hopelessly 111: Proposed Clinical Criteria for Physician-Assisted Suicide," New England Journal of Medicine 327 (1992): 1380-84; Guy I. Benrubi, "Euthanasia— The Need for Procedural Safeguards," New England Journal of Medicine 326 (1992): 197-99; Christine K. Cassel and Diane E. Meier, "Morals and Moralism in the Debate Over Euthanasia and Assisted Suicide," New England Journal of Medicine 323 (1990): 750-52; James Rachels, The End of Life (Oxford, England: Oxford University Press, 1986). 3. I restrict the term "euthanasia" to active euthanasia, excluding the termination of life-sustaining treatment, which has sometimes been called "passive euthanasia." Both law and ethics now treat the termination of treatment quite differently from the way they treat active euthanasia, so to use "euthanasia" to refer to both invites confusion. See generally "Report of the Council on Ethical and Judicial Affairs of the American Medical Association," Issues in Law & Medicine 10 (1994): 91-97, 92. 4. See Howard I. Kushner, "Women and Suicide in Historical Perspective," in Joyce McCarl Nielsen, ed., Feminist Research Methods: Exemplary Readings in the Social Sciences (Boulder, CO: Wesrview Press, 1990), 193-206, 198-200. 5. See Alan Meisel, The Right to Die (New York, NY: John Wiley & Sons, 1989), 62, & 1993 Cumulative Supplement No. 2, 50-54. 6. See Council on Ethical and Judicial Affairs, Code of Medical Ethics: Current Opinions with Annotations (Chicago, IL: American Medical Association, 1994),

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50-51; "Report of the Board of Trustees of the American Medical Association," Issues in Law & Medicine 10 (1994): 81-90; "Report of the Council on Ethical and Judicial Affairs;" Report of the Council on Ethical and Judicial Affairs of the American Medical Association: Euthanasia (Chicago, IL: American Medical Association, 1989). There are U.S. data on public opinion and physicians' self-reported practices. See, for example, "Report of the Board of Trustees." But the legal and ethical condemnation of physician-assisted suicide and euthanasia in the United States undoubtedly affect the self-reporting and render this a poor indicator of actual practices. 7. See Nancy S. Jecker, "Physician-Assisted Death in the Netherlands and the United States: Ethical and Cultural Aspects of Health Policy Development," Journal of the American Geriatrics Society 42 (1994): 672-78, 676. 8. See generally Howard I. Kushner, "Women and Suicidal Behavior: Epidemiology, Gender, and Lethality in Historical Perspective," in Silvia Sara Canetto and David Lester, eds., Women and Suicidal Behavior (New York, NY: Springer, 1995). 9. Compare Jecker, "Physician-Assisted Death," 676, on reasons physicians might differentially refuse women's requests. 10. See Lawrence Kohlberg, The Philosophy of Moral Development: Moral Stages and the Idea of Justice, vol. I (San Francisco, CA: Harper & Row, 1981); Lawrence Kohlberg, The Psychology of Moral Development: The Nature and Validity of Moral Stages, vol. II (San Francisco, CA: Harper & Row, 1984). 11. See Carol Gilligan, In A Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982). 12. Gilligan's work has prompted a large literature, building upon as well as criticizing her insights and methodology. See, for example, the essays collected in Larrabee, ed., An Ethic of Care. On attention to the ethics of care in bioethics and on feminist criticism of the ethics of care, see my Introduction to this volume. 13. See Kohlberg, The Psychology of Moral Development, 644-47. 14. On the Kohlberg-Gilligan debate, see generally Lawrence A. Blum, "Gilligan and Kohlberg: Implications for Moral Theory," in Larrabee, ed., Aw Ethic of Care, 49-68; Owen Flanagan and Kathryn Jackson, "Justice, Care, and Gender: The Kohlberg-Gilligan Debate Revisited," in Larrabee, ed., An Ethic of Care, 6984; Seyla Benhabib, "The Generalized and the Concrete Other: The KohlbergGilligan Controversy and Feminist Theory," in Seyla Benhabib and Drucilla Cornell, eds., Feminism as Critique: On the Politics of Gender (Minneapolis, MN: University of Minnesota Press, 1987), 77-95. 15. See, for example, Susan M. Wolf, "Holding the Line on Euthanasia," Hastings Center Report 19 (Jan./Feb. 1989): special supp. 13-15. 16. See "It's Over, Debbie," Journal of the American Medical Association 259 (1988): 272. 17. See Timothy Egan, "As Memory and Music Faded, Oregon Woman Chose Death," New "York Times, June 7, 1990, p. A1; Lisa Belkin, "Doctor Tells of First Death Using His Suicide Device," New "York Times, June 6, 1990, p. Al. 18. See "Doctor Assists in Two More Suicides in Michigan," New York Times, October 24, 1991, p. Al (Wantz and Miller). 19. See "Death at Kevorkian's Side Is Ruled Homicide," New York Times, June 6, 1992, p. 10; "Doctor Assists in Another Suicide," New York Times, September 27, 1992, p. 32; "Doctor in Michigan Helps a 6th Person To Commit Suicide," New York Times, November 24, 1992, p. A10; "2 Commit Suicide, Aided by Michigan Doctor," New York Times, December 16, 1992, p. A21. 20. See "Why Dr. Kevorkian Was Called In," New York Times, January 25, 1993, p. A16.


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21. See B. D. Colen, "Gender Question in Assisted Suicides," Newsday, November 25, 1992, p. 17; Ellen Goodman, "Act Now to Stop Dr. Death," Atlanta Journal and Constitution, May 27, 1992, p. All. 22. See Timothy E. Quill, "Death and Dignity—A Case of Individualized Decision Making," New England Journal of Medicine 324 (1991): 691-94. 23. On Quill's motivations, see Timothy E. Quill, "The Ambiguity of Clinical Intentions," New England Journal of Medicine 329 (1993): 1039-40. 24. Nicole Loraux, Tragic Ways of Killing a Woman, Anthony Forster, trans. (Cambridge, MA: Harvard University Press, 1987), 8. 25. Ibid., 12. 26. Ibid., 23. 27. Ibid., 11. 28. Kushner, "Women and Suicidal Behavior," 16-17 (citations omitted). 29. Kushner, "Women and Suicide in Historical Perspective," 195, citing Barbara Welter, "The Cult of True Womanhood: 1820-1860," American Quarterly 18 (1966): 151-55. 30. Ibid., 13-19. 31. Gilligan, In A Different Voice, 70. 32. Ibid., 132. 33. Loraux in Tragic Ways of Killing a Woman notes the single exception of Ajax. 34. See Peter Steinfels, "Help for the Helping Hands in Death," New York Times, February 14, 1993, sec. 4, pp. 1, 6. 35. See Charles S. Cleeland et al., "Pain and Its Treatment in Outpatients with Metastatic Cancer," New England Journal of Medicine 330 (1994): 592-96. 36. See Robert J. Blendon, U. S. Szalay, and R. A. Knox, "Should Physicians Aid Their Patients in Dying?" Journal of the American Medical Association 267 (1992): 2658-62. 37. See William Coryell, Jean Endicott, and Martin B. Keller, "Major Depression in a Non-Clinical Sample: Demographic and Clinical Risk Factors for First Onset," Archives of General Psychiatry 49 (1992): 117-25. 38. See Susan D. Block and J. Andrew Billings, "Patient Requests to Hasten Death: Evaluation and Management in Terminal Care," Archives of Internal Medicine 154 (1994): 2039-47. 39. Council on Ethical and Judicial Affairs, American Medical Association, "Gender Disparities in Clinical Decision Making," Journal of the American Medical Association 266 (1991): 559-62, 561-62. 40. See Nancy S. Jecker, "Can an Employer-Based Health Insurance System Be Just?" Journal of Health Politics, Policy & Law 18 (1993): 657-73; Employee Benefit Research Institute (EBRI), Sources of Health Insurance and Characteristics of the Uninsured: Analysis of the March 1992 Current Population Survey, EBRI Issue Brief No. 133 (Jan. 1993). 41. The patterns of uninsurance and underinsurance are complex. See, for example, Employee Benefit Resources Institute, Sources of Health Insurance. Recall that the poorest and the elderly are covered by Medicaid and Medicare, though they are subject to the gaps and deficiencies in quality of care that plague those programs. 42. Lawrence Schneiderman et al. purport to show that patients already consider burdens to others in making termination of treatment decisions, and— more importantly for this chapter—that men do so more than women. See Lawrence J. Schneiderman et al., "Attitudes of Seriously III Patients toward Treatment that Involves High Cost and Burdens on Others," Journal of Clinical Ethics 5 (1994): 109-12. But Peter A. Ubel and Robert M. Arnold criticize the

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methodology and dispute both conclusions in "The Euthanasia Debate and Empirical Evidence: Separating Burdens to Others from One's Own Quality of Life," Journal of Clinical Ethics 5 (1994): 155-58. 43. See, for example, Kushner, "Women and Suicidal Behavior." 44. See Colen, "Gender Question in Assisted Suicides." 45. Another area in which we do not allow apparent patient consent or request to authorize physician acquiescence is sex between doctor and patient. Even if the patient requests sex, the physician is morally and legally bound to refuse. The considerable consensus that now exists on this, however, has been the result of a difficult uphill battle. See generally Howard Brody, The Healer's Power (New Haven, CT: Yale University Press, 1992), 26-27; Nanette Gartrell et al., "Psychiatrist-Patient Sexual Contact: Results of a National Survey. Part 1. Prevalence," American Journal of Psychiatry 143 (1986): 1126-31. 46. As noted above, though, Nancy Jecker speculates that a physician's tendency to discount women's choices may also come into play. See Jecker, "Physician-Assisted Death," 676. Compare Silvia Sara Canetto, "Elderly Women and Suicidal Behavior," in Canetto and Lester, eds., Women and Suicidal Behavior, 215-33, 228, asking whether physicians are more willing to accept women's suicides. 47. See, for example, Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992); Barbara Ehrenreich and Deirdre English, For Her Own Good: 150 Years of the Experts' Advice to Women (New York, NY: Doubleday, 1978). 48. Sherwin, No Longer Patient, 157. 49. Compare Brody, "The Rescue Fantasy," in The Healer's Art, ch. 9. 50. Robert A. Burt, Taking Care of Strangers (New York, NY: Free Press, 1979), vi. See also Steven H. Miles, "Physicians and Their Patients' Suicides," Journal of the American Medical Association 271 (1994): 1786-88. I discuss the significance of the ambivalence in the euthanasia context in Wolf, "Holding the Line on Euthanasia." 51. In an article advocating the legitimation of physician-assisted suicide, the authors nonetheless note the lack of good data on U.S. practice: "From 3 to 37 percent of physicians responding to anonymous surveys reported secretly taking active steps to hasten a patient's death, but these survey data were flawed by low response rates and poor design." Quill, Cassel, and Meier, "Care of the Hopelessly 111," 1381 (footnotes with citations omitted). 52. On relevant differences between the United States and the Netherlands, see Jecker, "Physician-Assisted Death;" "Report of the Board of Trustees;" Margaret Battin, "Voluntary Euthanasia and the Risks of Abuse: Can We Learn Anything from the Netherlands?" Law, Medicine & Health Care 20 (1992): 13343. 53. There have been two major teams of researchers. The first, conducting research at governmental request, has produced publications including Loes Pijnenborg, Paul J. van der Maas, Johannes J. M. van Delden, and Caspar W. N. Looman, "Life-terminating acts without explicit request of patient," Lancet 341 (1993): 1196-99; Paul J. van der Maas, Johannes J. M. van Delden, and Loes Pijnenborg, "Euthanasia and other Medical Decisions Concerning the End of Life: An investigation performed upon request of the Commission of Inquiry into the Medical Practice concerning Euthanasia," Health Policy 22 (1992): 1262; and Paul J. van der Maas, Johannes J. M. van Delden, Loes Pijnenborg, and Caspar W. N. Looman, "Euthanasia and other medical decisions concerning the end of life," Lancet 338 (1991): 669-74. The second team's publications


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include G. van der Wal, J. T. van Eijk, H. J. Leenen, and C. Spreeuwenberg, "The use of drugs for euthanasia and assisted suicide in family practice" (Medline translation of Dutch title), Nederlands Tijdschrift Voor Geneeskunde 136 (1992): 1299-305; same authors, "Euthanasia and assisted suicide by physicians in the home situation. 2. Suffering of the patients" (Medline translation of Dutch title), same journal 135 (1991): 1599-603; and same authors, "Euthanasia and assisted suicide by physicians in the home situation. I. Diagnoses, age and sex of patients," same journal 135 (1991): 1593-98. More recently the latter group has published Gerrit van der Wai and Robert J. M. Dillmann, "Euthanasia in the Netherlands," British Medical Journal 308 (1994): 1346-49; M. T. Muller et al., "Voluntary Active Euthanasia and Physician-Assisted Suicide in Dutch Nursing Homes: Are the Requirements for Prudent Practice Properly Met?" Journal of the American Geriatrics Society 42 (1994): 624-29; G. van der Wal et al., "Voluntary Active Euthanasia and Physician-Assisted Suicide in Dutch Nursing Homes: Requests and Administrations," Journal of the American Geriatrics Society 42 (1994): 620-23. 54. van der Maas et al., "Euthanasia," Lancet. 55. Henk ten Have has pointed out to me that women have also predominated in the court cases on physician-assisted suicide and euthanasia in the Netherlands. Personal communication, April 1993. Ideally, those judicial opinions will be translated into English or be analyzed by someone bilingual, permitting comparison to the textual analysis of U.S. judicial opinions in Steven Miles and Alison August, "Courts, Gender, and 'the Right to Die,' " Law, Medicine & Health Care 18 (1990): 85-95. 56. van der Maas, van Delden, and Pijnenborg, "Euthanasia," Health Policy, 50. 57. van der Maas et al., "Euthanasia," Lancet, 671. 58. Johannes J. M. van Delden, personal communication, April 2, 1993. 59. Pijnenborg et al., "Life-terminating acts without explicit request of patient;" van der Maas, van Delden, and Pijnenborg, "Euthanasia," Health Policy, 50; Johannes J. M. van Delden, personal communication, April, 1993. Note that the 1991 Lancet article combines euthanasia, physician-assisted suicide, and "life-terminating events without explicit and persistent request," labeling the combination "euthanasia and related MDEL," and reporting a combined gender ratio of 61:39, with males predominating. See van der Maas et al., "Euthanasia," Lancet, 670-71. However, as I indicate in text, when you separate the three subcategories, women predominate for euthanasia. 60. Note that in Lancet, the researchers addressed both euthanasia and physician-assisted suicide in stating that, "Euthanasia and assisted suicide were more often found in deaths in relatively young men and in the urbanised western Netherlands, and this may be an indication of a shift towards a more demanding attitude of patients in matters concerning the end of life." van der Maas et al., "Euthanasia," Lancet, 673. See also Pijnenborg et al., "Lifeterminating acts without explicit request of patient." However, in their subsequent Health Policy publication, they reported that euthanasia was not more often found in men, though physician-assisted suicide was. van der Maas, van Delden, and Pijnenborg, "Euthanasia," Health Policy, 50. 61. Johannes J. M. van Delden, personal communication, April 1993. 62. See van der Maas, van Delden, and Pijnenborg, "Euthanasia," Health Policy, 52. 63. Compare, for example, "Netherlands: Ethnic Minority Population to Reach One Million by 2000," Financieele Dagblad, March 3, 1994 (ethnic minority

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population will then be 6.6 percent), with U.S. Department of Commerce, Bureau of the Census, Statistical Abstract of the United States 1993, 113th ed., 18 (20 percent of the 1990 population was non-white). 64. Canetto, "Elderly Women and Suicidal Behavior," 225-26 (citation omitted). I am grateful to Alta Charo for suggesting I also consider the preponderance of women in American nursing homes. See Census of the Population, 1990: General Population Characteristics of the United States (Washington, DC: Government Printing Office, 1992), 48 (1,278,433 women in nursing homes versus 493,609 men). On suicidal behavior, both attempted and completed, in U.S. nursing homes see Nancy J. Osgood, Barbara A. Brant, and Aaron Lipman, Suicide Among the Elderly in Long-Term Care facilities (New York, NY: Greenwood Press, 1991). 65. There is a substantial literature on the Tuskegee study. See, for example, Arthur L. Caplan, "When Evil Intrudes," Harold Edgar, "Outside the Community," Patricia A. King, "The Dangers of Difference," and James H. Jones, "The Tuskegee Legacy: AIDS and the Black Community," all in "Twenty Years After: The Legacy of the Tuskegee Syphilis Study," Hastings Center Report 22 (Nov.-Dec. 1992): 29-40; James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York, NY: Free Press, 1981); Allan M. Brandt, "Racism and Research: The Case of the Tuskegee Syphilis Study," Hastings Center Report 8 (Dec. 1978): 21-28. 66. See Mark B. Wenneker and Arnold M. Epstein, "Racial Inequalities in the Use of Procedures for Patients with Ischemic Heart Disease in Massachusetts," Journal of the American Medical Association 261 (1989): 233-57. See also Robert J. Blendon et al., "Access to Medical Care for Black and White Americans: A Matter of Continuing Concern," Journal of the American Medical Association 261 (1989): 278-81; Craig K. Svensson, "Representation of American Blacks in Clinical Trials of New Drugs," Journal of the American Medical Association 261 (1989): 263-65. 67. On the intersection of race and gender, for example, see Kimberle Crenshaw, "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics," Chicago Legal Forum 1989: 139-67. See also Patricia Hill Collins, Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment (New York, NY: Routledge, 1991). On the intersection of race and gender in health, see Evelyn C. White, ed., The Black Women's Health Book: Speaking for Ourselves (Seattle, WA: Seal Press, 1990). 68. See, for example, Morton J. Horowitz, "Rights," Harvard Civil Rights-Civil Liberties Law Review 23 (1988): 393-406; Mark Tushnet, "An Essay on Rights," Texas Law Review 62 (1984): 1363-403. 69. Though there is overlap in the rights critiques of Critical Legal Studies (CLS) and Critical Race Theory, "[t]he CLS critique of rights and rules is the most problematic aspect of the CLS program, and provides few answers for minority scholars and lawyers." Richard Delgado, "The Ethereal Scholar: Does Critical Legal Studies Have What Minorities Want?" Harvard Civil Rights-Civil Liberties Law Review 22 (1987): 301-22, 304 (footnote omitted). Patricia Williams, indeed, has argued the necessity of rights discourse: "[Statements . . . about the relative utility of needs over rights discourse overlook that blacks have been describing their needs for generations. . . . For blacks, describing needs has been a dismal failure. . . . " Patricia J. Williams, The Alchemy of Race and Rights (Cambridge, MA: Harvard University Press, 1991), 151. 70. See, for example, Mary Ann Glendon, Rights Talk: The Impoverishment of Political Discourse (New York, NY: Free Press, 1991).


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71. Margaret Farley has helpfully traced commonalities as well as distinctions between feminist theory and other traditions, noting that it is wrong to demand of any one critical stream that it bear no relation to the others. See Margaret A. Farley, "Feminist Theology and Bioethics," in Earl E. Shelp, ed., Theology and Bioethics: Exploring the Foundations and Frontiers (Boston, MA: D. Reidel, 1985), 163-85. 72. I take the term "rights talk" from Glendon, Rights Talk. 73. See, for example, Jean Grimshaw, Philosophy and Feminist Thinking (Minneapolis, MN: University of Minnesota Press, 1986), 175. 74. See, for example, Naomi Scheman, "Individualism and the Objects of Psychology," in Sandra Harding and Merrill B. Hintikka, eds., Discovering Reality: Feminist Perspectives on Epistemology, Metaphysics, Methodology, and the Philosophy of Science (Boston, MA: D. Reidel, 1983), 225-44, 240. 75. See Jennifer Nedelsky, "Reconceiving Autonomy: Sources, Thoughts and Possibilities," Yale Journal of Law and Feminism 1 (1989): 7-36. 76. Ibid., 12-13. 77. See Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990). 78. Another author offering a feminist revision of autonomy and rights is Diana T. Meyers in "The Socialized Individual and Individual Autonomy: An Intersection between Philosophy and Psychology," in Eva Feder Kittay and Diana T. Meyers, eds., Women and Moral Theory (Savage, MD: Rowman & Littlefield, 1987), 139-53. See also Elizabeth M. Schneider, "The Dialectic of Rights and Politics: Perspectives from the Women's Movement," New York University Law Review 61 (1986): 589-652. There is a large feminist literature presenting a critique of rights, some of it rejecting the utility of such language. See, for example, Catharine MacKinnon, "Feminism, Marxism, Method and the State: Toward Feminist Jurisprudence," Signs 8 (1983): 635-58, 658 ("Abstract rights will authorize the male experience of the world."). 79. See, for example, Susan M. Wolf, "Nancy Beth Cruzan: In No Voice At All," Hastings Center Report 20 (Jan.-Feb. 1990): 38-41; Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington, IN: Indiana University Press & The Hastings Center, 1987). 80. John Stuart Mill, "On Liberty," in Marshall Cohen, ed., The Philosophy of John Stuart Mill: Ethical, Political and Religious (New York, NY: Random House, 1961), 185-319, 304. 81. Leon R. Kass also argues against the existence of a "right to die" in "Is There a Right to Die?" Hastings Center Report 23 (Jan.-Feb. 1993): 34-43. 82. The Dutch studies show that even when patients know they can get assisted suicide and euthanasia, three times more patients ask for such assurance from their physicians than actually die that way. See van der Maas et al., "Euthanasia," Lancet, 673. 83. On these obligations and their derivation, see Leon R. Kass, "Neither for Love nor Money: Why Doctors Must Not Kill," The Public Interest 94 (Winter 1989): 25-46; Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 4th ed. (New York, NY: Oxford University Press, 1994), 189, 226-27. 84. See Leslie Bender, "A Feminist Analysis of Physician-Assisted Dying and Voluntary Active Euthanasia," Tennessee Law Review 59 (1992): 519-46, making a "caring" argument in favor of "physician-assisted death." 85. Brody, "Assisted Death." 86. James Rachels offers a like proposal. See Rachels, The End of Life. 87. For a summary of the debate over the proper structure of bioethics, see David DeGrazia, "Moving Forward in Bioethical Theory: Theories, Cases, and

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Specified Principlism," Journal of Medicine and Philosophy 17 (1992): 511-40. There have been several different attacks on a bioethics driven by principles, which is usually taken to be exemplified by Beauchamp and Childress, Principles of Biomedical Ethics. Clouser and Gert argue for a bioethics that would be even more "top-down" or deductive, proceeding from theory instead of principles. See K. Danner Clouser and Bernard Gert, "A Critique of Principlism," Journal of Medicine and Philosophy 15 (1990): 219-36. A different attack is presented by Ronald M. Green, "Method in Bioethics: A Troubled Assessment," Journal of Medicine and Philosophy 15 (1990): 179-97. Hoffmaster argues for an ethnography driven, "bottom-up" or inductive bioethics. Barry Hoffmaster, "The Theory and Practice of Applied Ethics," Dialogue XXX (1991): 213-34. Jonsen and Toulmin have urged a revival of casuistry built on case-by-case analysis. Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning (Berkeley, CA: University of California Press, 1988). Beauchamp and Childress discuss these challenges at length in the 4th edition of Principles of Biomedical Ethics. 88. See Gilligan, In A Different Voice, 174. Lawrence Blum points out that Kohlberg himself stated that "the final, most mature stage of moral reasoning involves an 'integration of justice and care that forms a single moral principle/ " but that Kohlberg, too, never spelled out what that integration would be. See Lawrence A. Blum, "Gilligan and Kohlberg: Implications for Moral Theory," Ethics 98 (1988): 472-91, 482-83 (footnote with citation omitted). 89. See Blum, "Gilligan and Kohlberg," 477. 90. Owen Flanagan and Kathryn Jackson, "Justice, Care, and Gender: The Kohlberg-Gilligan Debate Revisited," in Larrabee, ed., An Ethic of Care, 69-84, 71. 91. Martha Minow and Elizabeth V. Spelman, "In Context," Southern California Law Review 63 (1990): 1597-652, 1625. 92. Ibid., 1629. 93. Ibid., 1630-31. 94. Ibid., 1632-33. 95. There are significant similarities here to Henry Richardson's proposal of "specified principlism." See DeGrazia, "Moving Forward in Bioethical Theory." 96. On the importance of paying attention to who is doing the theorizing and to what end, including in feminist theorizing, see Maria C. Lugones and Elizabeth V. Spelman, "Have We Got a Theory for You! Feminist Theory, Cultural Imperialism and the Demand for 'The Woman's Voice,' " Women's Studies International Forum 6 (1983): 573-81. 97. I have elsewhere argued that health care institutions should create processes to uncover and combat sexism and racism, among other problems. See Susan M. Wolf, "Toward a Theory of Process," Law, Medicine & Health Care 20 (1992): 278-90. 98. On the importance of viewing the medical profession in the context of the democratic polity, see Troyen Brennan, Just Doctoring: Medical Ethics in the Liberal State (Berkeley, CA: University of California Press, 1991). 99. See, for example, Howard J. Curzer, "Is Care A Virtue For Health Care Professionals?" Journal of Medicine and Philosophy 18 (1993): 51-69; Nancy S. Jecker and Donnie J. Self, "Separating Care And Cure: An Analysis Of Historical And Contemporary Images Of Nursing And Medicine," Journal of Medicine and Philosophy 16 (1991): 285-306. 100. Compare Canetto, "Elderly Women and Suicidal Behavior," finding evidence of this with respect to elderly women electing suicide.


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101. See van der Maas, van Delden, and Pijnenborg, "Euthanasia," Health Policy, 51-55, 145-46; van der Wal et al., "Voluntary Active Euthanasia and Physician-Assisted Suicide in Dutch Nursing Homes." 102. See Quill, Cassel, and Meier, "Care of the Hopelessly III." 103. In these two sentences, I disagree both with Kass's suggestion that the core commitments of medicine are set for all time by the ancient formulation of the doctor's role and with Brock's assertion that the core commitment of medicine is to do whatever the patient wants. See Kass, "Neither for Love Nor Money;" Dan Brock, "Voluntary Active Euthanasia," Hastings Center Report 22 (Mar.-Apr. 1992): 10-22. 104. See Jay Katz, The Silent World of Doctor and Patient (New York, NY: Free Press, 1984), 121-22. 105. See Miles and August, "Gender, Courts, and the 'Right to Die.' " 106. While a large literature analyzes the relationship between terminating life-sustaining treatment and the practices of physician-assisted suicide and euthanasia, more recently attention has turned to the relationship between those latter practices and abortion. On the question of whether respect for women's choice of abortion requires legitimation of those practices, see, for example, Seth F. Kreimer, "Does Pro-choice Mean Pro-Kevorkian? An Essay on Roe, Casey, and the Right to Die," American University Law Review 44 (1995): 803-54. Full analysis of why respect for the choice of abortion does not require legitimation of physician-assisted suicide and euthanasia is beyond the scope of this chapter. However, the courts themselves are beginning to argue the distinction. See Compassion in Dying v. Washington, 49 F.3d 586 (9th Cir. 1995). On gender specifically, there are strong arguments that gender equity and concern for the fate of women demand respect for the abortion choice, whereas I am arguing that gender concerns cut the other way when it comes to physicianassisted suicide and euthanasia.

11 Feminism, Bioethics, and Genetics Adrienne Asch and Gail Getter

Biological and medical research is to a large extent now focusing on the influence of genetics on health and illness. People can learn whether they or their offspring are at risk for several hundred genetic disorders. Researchers attribute an ever-larger number of biological and behavioral characteristics to genetics. This focus on genetics will affect everyone and will have ramifications throughout society. Yet women face particular concerns. Genetic tests are being developed that can diagnose disease before symptoms appear. Many of the conditions for which tests are being developed are found exclusively or primarily in women. Moreover, prenatal tests are designed to provide information during pregnancy. Women are especially affected by this proliferation of information and by the way professionals interpret and communicate it. This chapter considers what a feminist analysis contributes to a discussion of the social and ethical questions raised by expanding genetic knowledge. At first glance the search for knowledge of the role of genetics in human health and behavior might appear to pose no problems for feminism. However, we contend that both the philosophy of science driving the quest and the uses made of the knowledge give reason for concern and some skepticism. Feminism has long struggled with the relationship between the biological fact of one's sex and the social construction of gender; it thus can serve as a model in the struggle to understand the relation between the biological fact of one's

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genes and the social construction of inheritance, disease, and disability. Feminism has also long struggled with questions concerning the implications of human difference; it thus has much to offer discussions of genetic difference, the cultural construction of "normalcy," and community acceptance or rejection of the genetically different. Finally, feminist critique of the tendency to turn to technology and science to cure all social ills has direct bearing at a time when genetics is coming to be viewed as a panacea rather than merely one avenue for alleviating problems. Indeed, the exaggerated claims made for genetic science jeopardize the capacity to understand the roots of social and health problems, to handle human diversity, and to recognize the complex psychological and social elements in family life. This chapter is divided into three major sections. The first section analyzes the modern history of genetics and genetic research. We discuss the meaning of genetic disease and patterns of inheritance, past and present activity in genetics research, and the ongoing Human Genome Initiative. The second section presents feminist ethical analyses relevant to various kinds of genetic testing: feminist perspectives on autonomy, on biological determinism, on community, and on women's moral reasoning and valuing of connection. The third section applies these feminist analyses to specific topics in medical genetics. Using breast cancer as a case study, we first examine presymptomatic testing, which promises to be increasingly significant. Next we discuss feminist approaches to prenatal diagnosis and its use in determining sex, sexual orientation, and disability. Finally, we analyze the role of gender in patient-provider relations and implications of expected changes in how and by whom genetic information is conveyed. Our analyses and conclusions will not be shared by all feminist writers or even all we cite. There is a plurality of feminist perspectives rather than one. Yet the broad themes we identify are likely to be recognized as central by all.

Genetics The history of modern genetics is a history of grappling with basic themes that feminism has sought to illuminate. Understanding patterns of inheritance has required debate over the relation between biology and social understanding. Research on genetics has repeatedly been used to mark some people as different and beyond the orbit of the societal community. The Human Genome Initiative (also called the "Human Genome Project") forces us to confront questions about the relation between biology and culture, difference, and the proper uses of technology.

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Feminist Perspective on Specific Problems in Bioethics

Patterns of Inheritance Throughout the ages people have known that certain characteristics seemed to "run in families." But how, why, and with what probability eluded scientists until Gregor Mendel conducted his research with plants during the last part of the nineteenth century. Ever since, biologists have sought to understand how physiological traits, behavioral characteristics, and physical and mental disorders were inherited. As they have learned, and as research only re-emphasizes, the mechanisms of inheritance turn out to be extremely complex. Most effort to comprehend inheritance stems from interest in discerning the etiology of characteristics that are in some way noteworthy—usually because they are either prized or feared. Thus explanations of inheritance typically focus on physical or mental illnesses, aptitudes, or socially desirable or undesirable activities. The discussion of inheritance that follows applies as much to eye or hair color as to conditions that society currently deems worthy of scientific attention. Several patterns of inheritance have been identified.1 Those traits whose expression is due to a single gene passed to a child from either parent are called dominant gene characteristics. In such cases, when only one parent carries the gene, each child has a 50 percent chance of inheriting the gene. Many other traits and disorders, called recessive, require that a child inherit one copy of the relevant gene from each parent. Then each child of the two "carrier" parents (themselves usually clinically unaffected) has a 25 percent chance of inheriting the gene for the trait or condition. If instead, the child inherits only one copy from one parent, that does not lead to the expression of the characteristic. Instead, like the parents, the child "carries" the gene for that characteristic and can pass the gene on to his or her offspring, although not displaying any manifestations of that condition him- or herself. Some diseases of great concern to the medical world and the public are inherited in a dominant manner and some in a recessive manner, such as Huntington's disease and sickle-cell disease respectively. Still another group of conditions, also caused by a single gene, are of special importance to women. These so-called X-linked disorders, such as hemophilia or Duchenne's muscular dystrophy, are passed through the mother, since the gene that causes each of them is transmitted to the child on the X-chromosome. Another group of disorders, called chromosomal disorders, stem from an atypical structure or number of entire chromosomes or portions of chromosomes, rather than from a mutation in a gene. Down syndrome, which is associated with mental retardation and risk of which inspires many people to obtain prenatal diagnosis, is the consequence of an extra copy of chromosome 21.


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Although the foregoing patterns of inheritance have been linked to several thousand disorders, many other illnesses result from a complex interaction of genes and environment. These multifactorial conditions have a genetic component, but the expression of those genes is also influenced by interaction with other genes and with the individual's entire environment.2 For adult-onset disorders, multifactorial patterns will predominate.3 Conditions in this category include hypertension, many forms of cancer, some coronary disease, alcoholism, and Alzheimer's disease.4 Susceptibility to the kind of breast cancer that is not concentrated in families, for example, may be genetic in part, but may also be a product of a woman's lifetime exposure to estrogen.5 Finally, some abnormalities in the genes actually occur through the transformation of the gene in certain cells of the individual during his or her lifespan. A variety of common cancers are thought to be caused by this type of somatic mutation. In such cases, neither parent necessarily passed on a faulty copy of a predisposing gene to the child. As this description of different patterns of inheritance shows, various complex mechanisms determine whether having a gene for a particular disorder will result in that person or that person's offspring manifesting the disorder itself. Yet the history of work on genetics and societal discussion is a history of confusion on this point. Over and over, the physiological fact of having a particular gene has been misunderstood to mean that the person has the disorder. Even worse, the presence of an "abnormal" gene has been construed at times to mean the person herself is "abnormal." Anatomy has been seen as destiny.6

Research in Genetics From the beginning of this century until World War II, scientists had early success in learning the inheritance of some physical characteristics, such as eye color,7 but much less success in pinpointing the inheritance of complex behaviors. Introducing an interdisciplinary volume on current work in genetics, Daniel Kevles discusses the research of U.S., British, and German scientists up to the time of the Second World War. He notes that study often was motivated by the desire to find negative information about already-stigmatized ethnic, racial, and class groups. It was as if genetics offered an easy way to determine who was "one of us" and who was different. Kevles documents both the poor science (with many subsequently discredited conclusions) and the blatant racism of the genetic research undertaken in the first part of the century. This culminated in the extremes of the Nazi brutality that led many reputable scholars to avoid the study of human genetics for the quarter century thereafter.8 Instead, medical researchers and social scientists concentrated on environmental factors as the dominant explanation for human talents and problems.

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Despite the discomfort with eugenic overtones and technical difficulties of the work itself, those who persisted made some progress in locating chromosomal or genetic origins of disorders such as Down syndrome, hemophilia, sickle-cell anemia, and Tay-Sachs disease. By the mid-1970s genetic screening and prenatal tests could identify carriers of and fetuses with these conditions. Although this understanding of etiology and diagnostic capacity has increased from the 1970s to today, there are few medical interventions to prevent or substantially alleviate most of the disorders for which tests are available, and those that exist are not directly attributable to genetic research.9 Thus once someone knows that she or he carries the recessive gene for sickle-cell anemia or Tay-Sachs disease, she or he cannot use medication or nutrition to prevent the birth of a child with such a condition. The only options are to avoid conceiving a child with a partner who also carries the recessive gene, or to test any fetus conceived with a similarly affected partner to learn whether the fetus received both copies of the gene and will actually be affected. In instances where the characteristic is transmitted by a dominant gene, as long as one parent carries the gene there is a one-in-two chance that future children will inherit the particular characteristic. To avoid this, the carrier can only abort affected fetuses or refrain from biological reproduction. However, there are some interventions available to ameliorate conditions for which presymptomatic genetic testing is available. For example, in the case of familial hypercholesterolemia, there are ways to postpone the onset of the disease and its sequelae. But in the case of Huntington's disease, for which there is no treatment, once someone knows that she or he carries this dominant gene, he or she can do nothing but prepare for the development of symptoms and then death. Of course, identifying a genetic disorder through presymptomatic testing can have reproductive implications as well. For example, many adults who carry the gene for Huntington's disease are prospective parents as well. They, too, will have a one-in-two chance of passing on the particular characteristic to future children.10 The fact that we can increasingly test for the presence of anomalous genes but then rarely can prevent or alleviate the associated condition means that genetic testing has remained a powerful way to label people. Although we can hope that the worst of earlier eugenic efforts are behind us, we still have to ask the question of whether genetics continues to label people as "one of us" or different. And we still have to worry what the consequence is of being so labeled different.

The Human Genome Initiative What has come to be known as the Human Genome Initiative, or Human Genome Project, began with several separate scientific labora-


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tones independently working to learn about the location, structure, and interaction of different genes. In the late 1980s, prominent scientists persuaded Congress and the Executive branch to expand and coordinate the work in genetics. Congress appropriated a budget to the National Institutes of Health and the Department of Energy to fund a fifteen-year project that would locate each one of the hundreds of thousands of genes in the cells of our body (known as "mapping"), learn the molecular structure of each gene ("sequencing"), and discover how genes function in the human organism to produce traits, behavior, and dysfunction.11 One prominent participant in the scientific work describes the project as the discovery of what is fundamental to our makeup: "The genome project is not just an isolated effort on the part of molecular biologists. It is a natural development of the current themes of biology as a whole. The information carried on the DNA ... is the most fundamental property of the body."12 Walter Gilbert is not alone in claiming that the Human Genome Project will reveal "what makes us human."13 Leroy Hood enthusiastically claims that the Genome Project is leading to "creating an encyclopedia of life."14 These views are echoed by a 1988 report of the National Research Council Committee on Mapping and Sequencing the Human Genome: "Encoded in the DNA sequence are fundamental determinants of those mental capacities—learning, language, memory—essential to human culture. Encoded there as well are the mutations and variations that cause or increase susceptibility to many diseases responsible for much human suffering." The Committee concluded that "a project to map and sequence the human genome should be undertaken . . . [to] allow rapid progress to occur in the diagnosis and ultimate control of many human diseases."15 The Congressional Office of Technology Assessment (OTA) has gone even further: "[N]ew technologies for identifying traits and altering genes make it possible for eugenic goals to be achieved through technological as opposed to social control."16 But the OTA distinguishes this version of eugenics from earlier varieties by calling it a "eugenics of normalcy:" "the use of genetic information ... to ensure that . . . each individual has at least a modicum of normal genes."17 The OTA finds that "individuals have a paramount right to be born with a normal, adequate hereditary endowment."18 The Human Genome Project thus raises again the danger that we will mistake anatomy for destiny and use genetics to label and separate those who are "different." If the project indeed maps the full human genome, it will raise those questions in more powerful form than ever. Geneticists will be able to tell a person a great deal about disorders they or their children may develop in the future. At the same time, geneticists will undoubtedly identify many more people as genetically

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affected or at-risk than now. Added to this intensification of prior dangers, there will be a great temptation to revere the technology and science, seeking in them the answers to our questions. The trick will be to recognize those questions as social and ethical ones: What is meant by such concepts as "health," "deviation," "disease," "risk," and "disability?" When is a deviation from "normality" sufficiently undesirable that it should be screened for and perhaps avoided? Do people have a right not to know about their genetic makeup? Who should have access to results? If genes are shown to play a substantial role in our health, intelligence, and personality, what are the consequences for our selfconception, understanding of free will and determinism, and our responsibility to ourselves and others?19 No bioethical20 or feminist21 consensus has yet emerged on these issues.22

Insights from Feminism There is no single feminist theory or even feminist ethics.23 Despite differences on a wide range of normative and theoretical issues, Alison Jaggar argues that feminists do share two common assumptions: (1) the subordination of women is morally wrong, and (2) the moral experience of women is worthy of respect.24 As central as these views are to any notion of feminist medical ethics, they do not lead inevitably to a particular conclusion about genetics and the Human Genome Project. Yet feminist work does offer important insights that will aid analysis. In this section, we identify those insights, applying them in the following section to particular problems in current genetic research. The insights we develop here embrace: a commitment to women's competence as moral agents and to promoting the conditions whereby women can take control of the decisions that profoundly affect their lives; an opposition to any simplistic view that anatomy is destiny, with a corollary that apparent anatomical differences may have nonbiological roots and nonbiological remedies; a commitment to broadening a sense of community and to reducing oppression that pits sexes, classes, races, and generations against one another; and a belief that understanding moral and social problems requires a kind of moral reasoning that pays close attention to the particulars of people's lives and experiences as well as to general principles.

Autonomy and Informed Decision Making Certain tenets of feminism can be viewed as lending support to expanding our genetic knowledge. Embracing strands of the Western liberal philosophical tradition, many feminists espouse the value of knowledge for its own sake and for the part it can play in our efforts to gain control over our lives.25 Concepts of choice, autonomy, and


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the liberatory potential of knowledge all have been central to feminists seeking to empower women. As Susan Sherwin rightly points out, feminists share with others in medical ethics a deep appreciation for patient autonomy in treatment decision making. Genuine autonomy requires that decision makers possess both sufficient knowledge and options to make careful, informed choices about their lives.26 The most compelling argument for supporting expanding our genetic research is that people will use genetic information, as they use other medical information, to plan their lives. Presymptomatic tests for treatable genetic disorders give people information that may help them to arrange their lives to minimize the adverse effects of many adult-onset illnesses. Similarly, women may have a particular interest in learning all they can about their own health and that of any future children as they make decisions about childbearing. Yet others equally committed to women's equality and selfdetermination contend that the acquisition of genetic knowledge may turn out to undermine women's autonomy and sense of control over their lives.27 Already disadvantaged in their dealings with the world of health professionals, women will face special scrutiny because women are seen as responsible for reproduction and family life generally.28 Barbara Katz Rothman, Abby Lippman, and Michelle Stanworth are among feminists who contend that women's options for handling their pregnancies and the rest of their lives will be reduced, as increasing numbers of physicians insist that genetic testing is part of the standard of care and as family and friends assume that "of course" women will have an amniocentesis during pregnancy.29 Others charge that a focus on genetics expresses the individualism of Western philosophy, science, and politics so antithetical to many strains of feminism.30 To the extent that human variation, especially undesirable human variation, can be attributed to biological causes, the affected individuals themselves will be expected to solve problems or live with their consequences, and the larger society will have no obligation to prevent or ameliorate negative effects. Along with more constraints on their choices of lifestyle and medical care, women may discover that they have less community support to deal with any problems that the larger society believes should be avoided by reproductive or presymptomatic testing.

Biological Determinism Arguably at least as central a feminist project as promoting autonomy has been to disentangle one's personal destiny from one's biology. Women's particular role in reproduction must not become their sole role in the world. By defining what it means to be human (as Gilbert

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says), or by presenting human learning, memory, and language as encoded in DNA (in the words of the National Research Council), the focus on genetic knowledge can subvert the important feminist social goal of viewing women in particular and people in general as more than their biology. Biologist and feminist Ruth Hubbard illustrates the unfortunate impact that reductionism has already had on thinking about women's lives and capacities. "Sex-typed generalizations, such as that men are heavier, taller, or stronger than women, obscure the diversity among women and among men and the extensive overlaps between them for all traits except those directly involved with procreation."31 Hubbard then cites research showing that something as purportedly constant and biologically determined as the female menstrual cycle actually varies with such environmental and cultural factors as nutrition and physical activity.32 In another pointed example of how presumed biological differences between males and females have a social and cultural component, she writes: If a society puts half its children into short skirts and warns them not to move in ways that reveal their panties, while putting the other half into jeans and overalls and encouraging them to climb trees, play ball, and participate in other vigorous outdoor games, then these two groups of people will be biologically as well as socially different. . . . Their muscles will be different, as will their reflexes, posture, arms, legs and feet, hand-eye coordination, and so on.33

She and others fear that the tendency to search for the simplest explanation of phenomena will lead contemporary geneticists to claim relationships between genes and characteristics as spurious as those claimed by the people who launched the discipline nearly a hundred years ago. She argues that knowing about every molecule of every gene in the human organism will not tell scientists and physicians everything they hope to learn, because the actions of molecules are not constant but themselves subject to environmental factors. One source of feminist concern, then, is that focus on genetics will lead people to ignore other explanations for human variability, and thus will promote inaccurate conclusions. Another potentially adverse consequence is that researchers and governmental institutions will neglect disorders with nongenetic origins that require more complex methods of prevention or treatment. Sandra Harding notes that politics and morals are implicated both in one's theories and methods of study.34 She stresses that values and politics frame the questions asked and the interpretation of data gathered to answer them. If scientists succeed in convincing policy makers and the general public that the


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sources of social and health problems are located predominantly in genes, they will steer more and more money into science and away from activities that seek causes and solutions to health problems in environmental factors. Feminists will be concerned that focusing on the genetic and biological underpinnings of traits, behavior, and disorders will lead to the fallacy of reductionism—describing phenomena in overly simplistic terms and neglecting complex interactions of such genes with other facets of human biology, psychology, and society. The risk of concentrating on the biological bases of disease to the exclusion of more complex social and economic bases can be seen in the relative inattention paid to preventing the disabilities stemming from lead poisoning and failure to vaccinate children. It is well documented that these account for a substantial portion of childhood disability. As recently as the late 1980s, lead poisoning was the most common cause of childhood disability in Massachusetts,35 and in 1989 nearly one fourth of the nation's two-year-olds had not received proper polio vaccinations.36 Because many lead-exposed and unvaccinated children are members of racial minorities and also poor, they and their parents may have less power than needed to demand government action. Environmental detoxification and intensive immunization projects require sustained, routine, unexciting work and involve battling the powerful industrial world and the pharmaceutical establishment. Both projects offer less glamor and intellectual challenge than basic science. All the foregoing show the importance of feminist tenets leading away from the individual and the biological and toward the social fabric of life and social solutions to human problems. Thus we turn now to a discussion of the social community, and exactly who is in and outside of it.

Feminism and Community The feminist commitment to discerning social solutions to various problems is related to those strains in feminist theory that seek to create a broad and deep sense of community among women in particular but also throughout society. Feminists are not alone in decrying the consequences of individualism pervading much of Western liberal political philosophy. There is a growing belief that enshrining the single individual as a completely independent person who makes decisions about life based solely on that person's own needs and desires violates the ordinary daily experience of living among others. Most people live in close emotional and physical connection to families or friends, work with others, and in countless obvious ways affect and are affected by those others. To survive and to benefit from social life, people must find satisfactory means of getting along with others. If, as communitar-

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ians argue, no man or woman is an island, envisioning social life as though people were all isolated islands promotes aloneness, detachment, and refusal of a sense of shared responsibility for a shared fate.37 Whether or not various feminists embrace the philosophy of writers who call themselves communitarians, a large number of feminist theorists call for a politics and a women's movement that can encompass all people, irrespective of age, nationality, race, class, gender, or sexual orientation. The first goal of feminism, of course, is to end the oppression that results from treating women as "the other," as "different and less" than men. To be treated as "the other" is to be denied the range of opportunities open to those in the group of valued people, and instead to be categorized and marginalized based on one personal characteristic—gender. Explaining the connection between feminism, genetics, and community requires examining concepts of normality and difference. Seeking to advance women of every age, ethnicity, and nation, feminist theory and politics have struggled to appreciate the differences in women's lives while finding features of experience that bind all women together.38 Nonetheless, information from genetic research confronts feminists with what appears to be a particularly troubling and controversial version of the question: How much and what kind of difference can be incorporated within a notion of community? Evelyn Fox Keller is among those who see genetic research as endangering the capacity to appreciate and incorporate diversity into our community life. In fact, she suggests that it increases tendencies to adopt narrow concepts of normality.39 "Normal" can mean the statistical average. We can measure height or weight for example and can calculate the statistical average. The consequences of falling above or below the statistical norm will vary, however, depending on how the characteristic is perceived by one's group or society. Not all deviations from the statistical average entail the same consequences. Moreover, "normal" has another, related meaning—the ideal. It is what we all should be, even if the statistical average is not that. As Martha Minow painstakingly and thoughtfully elucidates, differences among individuals or groups matter only if some segment of a population succeeds in persuading others that they matter, and then creates hierarchies of more and less desirable attributes.40 Her work is especially useful in showing that deviation from a statistical majority or norm historically has led to profound differences in treatment and status. She points out that "difference" in attributes allows hierarchies to develop, with the more powerful people viewing their characteristics as the ideal. Deviating, then, in skin color or height has meant being perceived as less good and less appreciated than those in power, who often (but not always) comprise the statistical majority. Minow de-


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scribes several unstated assumptions that lead what could be simple difference to become imbued with negative connotations: We typically adopt an unstated point of reference when assessing others. It is from the point of reference of this norm that we determine who is different and who is normal. . . . The unstated reference point is that of the people with power. . . . Finally, there is an assumption that the existing social and economic arrangements are natural and neutral.41

Although some variations, being left-handed for example, were once stigmatized and are no longer, other human differences persist in evoking social stigma and negative outcomes. How people of a particular height and build are viewed depends on the aesthetic standards of a specific era as well as standards of functioning at valued tasks. In the 1990s, the beauty ideal for women may be nothing resembling the statistically average woman in weight, build, or facial features.42 The U.S. adult described as of "average intelligence" scores between 90 and 120 on the admittedly imperfect measuring instrument of the IQ test.43 Because intelligence is highly prized, people described as gifted, bright, and above normal are esteemed over those possessing this typical amount of measured intelligence. Only those of less-than-average, rather than those of more-than-average intelligence face negative treatment and labeling. It is again the perspective of those in power that governs. Searching for the "normal" human genome could easily provide more opportunities to stigmatize and exclude people. Keller warns that the Human Genome Project itself will establish the norm. She says that genetics merely provides the information enabling the individual to realize an inalienable right to health, where "health" is defined in reference to a tacit norm, signified by "the human genome," and in contradistinction to a state of unhealth (or abnormality), indicated by an ever growing list of conditions characterized as "genetic disease."44

In the past, lacking the tools to learn who would develop various diseases and disabilities, we constructed our health care system and our public health activities to reflect the proposition that we were basically all at risk of acquiring cancer or diabetes or experiencing harm from toxic substances in the environment. Despite the stigma falling upon people with mental illness, epilepsy, or deafness, the awareness that these conditions could affect anyone at any time resulted in some sense of societal commitment to improving the lives of those who had them. Communal provision for health care and disease prevention rested on the notion that whether we were well or ill was largely ran-

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dom and beyond our control.45 The advocates of the Human Genome Initiative could promote its value while strengthening the commitment to health care for everyone by emphasizing that all people carry between five and ten genes for serious disability or for lethal conditions.46 However, to the extent we all begin to believe that we are our genes, and as we develop more and more genetic tests, we may no longer view health status as such a random characteristic.47 This may reduce our communal commitment to eradicating or treating disease and disability.48 To describe someone as having a disease or disability is, of course, to indicate that they fall below both the ideal and the majority, and in most cases cannot meet a standard of what Norman Daniels calls "species-typical functioning."49 Thus, as has been acknowledged more fully elsewhere,50 people who perform physically, cognitively, or psychologically below the ideal and the average are likely to experience limitations and hardships even after current social, legal, and financial obstacles are removed. Although Daniels uses "species-typical functioning" as a guide for a health care system committed to promoting such functioning for everyone, the Human Genome Initiative could turn out to make "species-typical functioning" a guide to joining or remaining part of the human community. To the extent that notions of community require breaking down legal barriers and eradicating prejudice, feminists are committed to doing so, even if they do not always agree on other topics. For those who would describe themselves as socialist-feminists,51 the understanding of community includes a commitment to removing the economic inequalities that bar many people from obtaining such primary goods as health care. In thinking about how our own socialist-feminist leanings influence our assessment of the Genome Project, we would argue that because genetic screening and counseling are medical services that can profoundly influence people's futures, the community should be obligated to make those services readily available in any plan of basic health care. Absent such a policy, genetic disorders will come to be associated with poverty and will acquire even more stigma than now accrues to people who have disabilities. Thus, despite our qualms about much of the philosophy behind the Genome Project and our reluctance to suggest anything that will encourage the overselling of genetic services, we believe that equal access to these services is an important vehicle for preserving community by minimizing the harms that grow out of the basic inequality in the distribution of human characteristics.

Feminism, Connection, and Moral Reasoning A number of feminist psychologists and philosophers have argued that women frame their lives based on their connections with and commit-


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ments to others, be they partners, family members, or friends.52 Women have been socialized to prize their relationships to others, even when this valuation of connectedness has thwarted their own ambitions or led to psychological and physical abuse. It is easy to catalog the economic and social subordination that has predisposed women to such connectedness and to enumerate its current pitfalls, but increasingly feminist theorists appreciate its virtues and recommend that they be practiced by men as well. In fact, one can understand the support for connectedness and a sense of responsibility for preserving harmonious personal relationships as parallel with the interest in creating a society that would foster community out of diversity. Should people in close relationships hold their own autonomy and self-realization paramount? How much should these be tempered by a commitment to promoting aspirations of people with whom we have strong emotional bonds? Genetic knowledge provides another arena in which these questions of self-definition and responsibility to others emerge. What are or should be the responsibilities of prospective parents to their children-to-be, of partners to each other, and of siblings to one another in an era of genetic analysis? And are family responsibilities different in the context of presymptomatic, as opposed to reproductive, genetic testing? In answering moral questions, a number of feminist researchers beginning with Carol Gilligan have found that people can use two different models of moral reasoning—one emphasizing universal principles, and the other particular relationships and the maintenance of connection.53 Although empirical claims that women tend to use the latter approach more than men have been disputed,54 many feminist philosophers have extolled a particularized and contextual approach to moral reasoning, while disagreeing on what role more universal moral principles might have in such an approach.55 A particularized approach to moral reasoning requires us to examine a wealth of detail about our roles, obligations, emotional commitments, and so forth. What may appear to an outsider to be the morally commendable action may be viewed quite differently by the person involved who appreciates the nuances of relationships. We now turn to some specifics of new genetic technology to give these abstractions the concreteness feminists applaud in adequate moral reasoning.

Applications of Feminist Theory to Specific Problems in Genetics In articulating above key feminist concepts that have influenced our own thinking about genetics, we did not often differentiate between reproductive and presymptomatic testing. Although much of feminist theory and many of our own views apply to both, a full understanding

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of the debate requires comment about each of the technologies. We begin with presymptomatic testing for genetic disorders that do not manifest themselves until adulthood. Then we consider prenatal testing. Finally we consider the role of gender in genetic counseling.

Presymptomatic Testing: A Case Study of Breast Cancer One of the outcomes of the Human Genome Project will be a greatly expanded ability to identify predisposition to disease in an individual. The ability to conduct testing of individuals before they develop any symptoms is likely to expand the traditional focus of genetics from reproductive testing to testing adults for late-onset diseases. Some of the tests being developed are for disorders that will respond to various medical treatments, whereas other tests will diagnose conditions for which there is currently no treatment. Some tests will be predictive (that is, they will be able to predict future development of the condition with certainty), whereas others will reveal only predisposition to disease. This section focuses on research into the genetics of inherited breast cancer,56 a common female cancer, typifying an adult-onset disorder that affects women.57 For decades, there has been little doubt that cancer is genetic, in the sense that transformation of a normal cell to invasive and malignant growth is due to changes in the DNA. But most cancer is genetic only in the sense that the DNA changes at the cellular level in the local tissue, not in the sense that affected DNA is transmitted by sperm or egg.58 Consequently, most cancer is not inherited in families.59 However, it has recently become clear that susceptibility to breast cancer is inherited in 5-10 percent of cases.60 There are several genes whose mutations have been associated with breast cancer. Most recently, attention has focused on two genes, BRCA1 and BRCA2. The BRCA1 gene has been isolated,61 and a marker for the BRCA2 gene has been localized.62 This research has required the study of large extended families known to be at-risk, with the testing of all family members. Alterations in BRCA1 may lead to breast cancer either because the mutations are inherited or because mutations that are specific to the tumor occur spontaneously at various points after birth. The latter socalled "somatic" mutations are not found in the normal cells of patients. Susceptibility to breast cancer can be inherited from either a mother or father, although fathers who carry mutations in the BRCA1 gene virtually never develop breast cancer. Breast cancer in men is, however, associated with the presence of a BRCA2 mutation. In general, inherited breast cancer appears earlier than purely somatic breast cancer because among women with inherited susceptibil-


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ity, one of the cancer-causing mutations is present in all cells from birth, so fewer mutations specific to breast cells need occur later. By identifying the genetic changes that are inherited, researchers hope then to be able to identify genes that are altered early in the development of such breast cancer. Recognizing those early genetic changes would be the best way to diagnose the disease at the molecular level. Proponents of genetic testing for the genes predisposing to inherited female cancers base their arguments on two major claims. The first, consistent with the principle of beneficence, says that once our scientific understanding of the genetics of breast cancer allows early identification of the women at genetic risk and the genes that are altered, we will likely be able either to prevent the disease's occurrence or to influence its course. By allowing prevention or treatment, genetic testing would benefit the women who discover that they carry the gene predisposing to cancer. Those who learned that they were free of the gene might obtain enormous psychological relief. The second argument favoring research and testing echoes that given above about the necessity of informed decision making if women are to have true autonomy.63 It is claimed that women from cancer families want this information and that it would be infantilizing if we, as a society, decided to override that preference out of concern over the social and psychological hazards of having information about one's risk for breast cancer. In addition, if feminist ethics challenges the subordination of women, then genetic research and testing in women can be touted as one step toward redressing the traditional gender bias in both research and treatment.64 This would be consistent with recent declarations that women's health needs more attention. Feminists less sanguine about testing for inherited female cancers65 are troubled by the possibility that women's autonomy may be overridden and women harmed. If pressured by providers and well-meaning family members to take these tests, and unsure about what is in their own best interests, women may be less likely to perceive a "choice" in these matters. The usual power imbalance between physician and female patient will be exacerbated when experts promise certainty and knowledge about a disease that frightens so many women, especially if the expert promises interventions or cures. When and if such genetic tests are added to a physician's technologic armamentarium, women found to be at-risk for breast cancer will be forced to make difficult decisions about the use of controversial preventive measures such as prophylactic mastectomy or experimental chemopreventive drugs. Furthermore, once a test to identify BRCA1 mutations is developed—anticipated to occur within two years—genetic testing will be in demand by or offered to the general population. Therefore, greater numbers of women will be making these decisions.

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However, "positive"66 test results in the general population might be more difficult to interpret. Since the gene responsible for the more dominant type of breast cancer may also "turn out to be the longsought biological master switch that can trigger the more common, noninherited" (i.e., multifactorial) form of the disease,67 positive genetic tests in women without a known family history may only signal predisposition to disease, not a high likelihood of developing it. There is a danger that the use of such tests in the general population might be encouraged, often inappropriately, because physicians will not fully understand the nuances of recommended use. Without fully understanding the significance of a positive test result for the gene in the general population, physicians may increase the anxiety level of women, and those who will not ultimately develop the disease may unnecessarily subject themselves to the harms associated with prophylactic treatments. Because of their applicability in the larger population and their predictive uncertainty, tests for predisposition to disease may have more widespread impact than tests that are able to predict disease with certainty. There will remain an element of uncertainty even for women from genetically high-risk families who are found not to carry the gene. Breast cancer can occur in women who have not inherited a gene predisposing them to the disease. Therefore, another concern about genetic testing for breast cancer is that women may be falsely reassured and assume that they are no longer at risk for the disease. This is a danger for women in the general population as well. If, following the news that they do not carry such a gene, women avoid the routine mammographic screening that would detect a tumor caused by somatic mutation, genetic testing will have been a disservice. Presymptomatic testing for breast cancer also has ramifications for feminist views of personal and family relations. Feminist ethics, for some, has become synonymous with an ethics of care,68 or as we termed it above, a commitment to connectedness in personal relations. A fully developed feminist ethics of personal and family relations must include not only parent-child relations through the lifespan, but sibling relationships, partner relationships, and friendships.69 Presymptomatic testing for breast cancer has powerful implications for partner and sibling relations. Because women's lives are inextricably intertwined with those of their intimate partners, there are no women's issues that are not also issues for those partners.70 What are the implications of genetic testing for breast cancer for the relationship between partners? Given that breasts have value for a woman's self-image and sex life, how might knowledge of a risk of breast cancer alter notions of self and the capacity for intimacy? How may a partner's knowledge of that risk alter his


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or her own desire for a relationship? Of course, many of these questions will confront women and their partners if breast cancer actually develops. What presymptomatic testing does is give the foreknowledge that cancer may develop perhaps years or decades before its onset. How should a woman and any partner come to terms with intimacy and sexuality under these circumstances? Presymptomatic testing for familial breast cancer is also likely to have powerful effects on sibling relationships. It is one thing to know that there is a family history of a particular disease. It is another thing to know which individuals in a family are at high risk. Furthermore, testing of one sibling provides information about the risk of other siblings. What might the implications of this knowledge be for intragenerational connectedness and communication? Does this imply a change in the sense of obligation toward one's sisters? If, indeed, women make decisions less based on notions of justice and abstract obligation and more on feelings of connection and fears of separation, as some have claimed,71 will women feel they have a choice whether to participate in linkage studies that require involvement of key family members? There has been some debate about whether linkage study protocols should preclude women from participating unless they agree to know the results.72 If that were the case, a woman could not merely provide a blood sample for her sister's sake and remain ignorant of her own risk. What if one sister does not want to know her risk status? Will knowing one another's risk status produce bonds for those who share the same genetic risk, but survivor guilt for those with a more benign genetic makeup? A feminist analysis of the genetics of breast cancer must tackle these questions.

Reproductive Genetic Testing: Feminist Anguish About Prenatal Diagnosis Genetic technology was first used in prenatal diagnosis of embryos and fetuses and in the counseling of prospective parents who were concerned about having a child with any one of several hundred detectable single-gene or chromosomal conditions. Despite the controversy surrounding abortion, most people who were surveyed believed that abortion for "fetal deformity" or disability was moral and should remain legal, regardless of other restrictions that might be placed on a woman's right to choose an abortion.73 For the past decade, however, feminists with a disability rights perspective have asked that the reproductive rights movement, the women's movement, and the medical and genetics communities reevaluate both rhetoric and underlying philosophy.74 At the moment, feminists are divided on the acceptability of selective abortion for disability.75 There is a range of viewpoints depending on what different

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feminists can imagine comfortably incorporating into community and society. There is far more agreement that the same genetic screening and prenatal diagnostic techniques should not be used to ascertain the sex of embryos and fetuses and then select one sex. Many feminists view any efforts to plan the sex of future children as epitomizing sexism, as expressed by the question "What is more sexist than to create a person to fit a sex role ideology?" 76 Writing about abortion in 1986, pro-choice advocate Beverly Harrison declared: "we believe abortion-for-gender choice is an unqualified moral wrong."77 Dorothy Wertz and John Fletcher also denounce abortion for sex selection as contrary to the fundamental goals of feminism when they say: "Although sex selection might ameliorate the situation of some individuals, it lowers the status of women in general and only perpetuates the situation that gave rise to it. ... If we believe that sexual equality is necessary for a just society, then we should oppose sex selection."78 Commitment to the goals of equality and to an inclusive community, then, convinces many feminists to oppose using technology to influence the sex of embryos conceived and children born.79 However, applying such an equality analysis to other uses of prenatal genetic testing yields no such consensus. Recently geneticists have announced the possible discovery of a "gay gene,"80 that is, a gene associated with sexual preference. As yet there is no fully articulated feminist position on using prenatal diagnosis and selective abortion for preventing homosexuality. Yet given the championing of gay rights by most feminists and feminist organizations, we would suspect that most would consider this an inappropriate and discriminatory use of technology. To those who claim that gay people might prefer not to be gay because of the anguish of living in a society that does not fully accept them, feminists with a community orientation would retort that it is society's attitudes that should change, not the sexual orientation of some of its members. In the last decade, some feminists have applied this same political and social analysis to genetic screening and selective abortion for fetal disability. They have argued that social attitudes toward disease and disability may prove as detrimental to leading a worthwhile life as the physiological impairment. Such a social-problem approach to disability departs from the model of disability that pervades the thinking of most standard bioethics81 and of the medical profession, including most geneticists and genetic counselors. This traditional thinking, elsewhere described by one of us (Asch),82 assumes that all adverse consequences of illness for social, psychological, economic, and physical functioning flow inevitably from the illness itself. Instead, feminists with a disability rights perspective contend that many of the differences, deficits,


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and problems faced by those with chronic illnesses and disabilities can be attributed to social arrangements. Many of those who take this view of disability find it linked to their view of women's subordination as defining women's place based on their biology.83 The thinking of these writers closely resembles that of Martha Minow, who describes how those social arrangements may be perceived as natural and neutral, but actually may prevent many people from participating in society. Theorists such as Minow and Sherwin84 recognize that discrimination against people with disabilities represents much of the oppression they face. But this perception of disability is not shared throughout feminist writing and does not engender a clear consensus about the uses of prenatal diagnostic technology. Harrison poignantly captures one feminist's struggle with the question of abortion for disability: But what of the greater number of cases when what is involved is some projection, often inexact, about mental retardation or physical disability? ... I, for one, must confess that so far the issues raised have produced more agony than clarity. . . . Yet when I ask myself what I would do in this situation, the limits of my values come screaming forth, "not too much mental retardation! I couldn't cope". . . . 85

Mindful of the physical, cognitive, and psychological deterioration caused by the late onset of Huntington's disease and the present lack of a treatment, feminist Laura Purdy argues that knowingly bringing children into the world who will one day experience this disability, or who will go through life from birth with a "withered arm," is immoral.86 She contends that regardless of any social changes, disability inevitably entails some amount of physical, psychological, social, and financial hardship—whether experienced by the person herself, people who know her, or the whole society. Since life without disability is hard enough, we should use any available tools to avoid unnecessary problems. And in the same article deploring sex selection through prenatal diagnosis, Wertz and Fletcher explicitly differentiate this improper use of technology from what they consider its valid role: the prevention of disability that causes suffering for parents and children.87 Disabilities that are present from birth or appear in childhood seem to inspire particular fear. Few people, if any, suggest that fetuses atrisk for adult-onset disorders be aborted. Childhood disabilities are seen as more physiologically debilitating, more frightening, and more disruptive to a good life. By contrast, the adult-onset disorders are more familiar to people and might have affected someone they know and love. The friend or relative, having experienced years of a typical life, is part of the nondisabled world. Late-onset disorders are per-

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ceived as less threatening and difficult to manage.88 Such disabilities may render life more problematic, but they do not engender in geneticists and the public the belief that people who have them are beyond what the human community can accept. In a recent discussion of prenatal diagnosis intended to refute feminist critics, Wertz and Fletcher maintain that those who value women's equality should endorse prenatal diagnosis and selective abortion for disability (particularly mental disability), because mothers of disabled children invariably take on disproportionate responsibility for their care and consequently relinquish all other economic and social roles.89 Although we cannot here review the abundant literature on the implications of children with disabilities for families in general and women in particular,90 we suggest that, if true, the contention reveals more about the failure of men and the society to be responsible for children than about problems inherent in the disabilities of the children. As Wertz and Fletcher's argument indicates, reproductive genetic testing challenges more than feminist notions of community. It poses a fundamental challenge to existing feminist thinking about the family. In fact, the genetic technologies compel feminists to broaden and deepen an already rich literature on reproduction91 by grappling with a host of perplexing questions: If we know something about our genetic destiny, should it alter whether and how we have children? What should we consider a reasonable assumption of parental, especially maternal, responsibility for children? For example, if more and more of children's health, behavior, intelligence, and personality will be ascribed to genetics, will it heighten notions of parental accountability for the way children turn out? How is such accountability compounded by knowing that a father or mother chose to reproduce even though biological reproduction included the likelihood that the resulting child would have a disease or disability? Will mother-blaming be even more common than it is now because they and not their partners transmit most X-linked disorders, and most usually to sons rather than to daughters?92 Genetic knowledge thus asks feminism to reconsider the meaning of the parent-child relationship. Should it remain, as Barbara Katz Rothman describes mothering, the ideal of unqualified love and acceptance of children, no matter what they turn out to be?93 The parent-child relationship, especially the mother-child relationship, traditionally is perceived as unique among all human relationships; the ideal has been one of welcome, love, and nurturance undiminished by disappointment with the particular qualities and behavior of the child. By giving parents some control over the characteristics of their child, reproductive genetic testing may lessen any interest in aspiring to such an ideal.


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An illusion of full control over what lies in store for parents and children—an illusion buttressed by the endorsement of prenatal testing, screening, and selective abortion—may damage the flexibility and resourcefulness required in most successful child rearing.94 It may be necessary, rather than merely desirable, for parents to strive for unequivocal love and appreciation. Successful parenthood requires recognition of personal limits, however, and certainly both children with and without disabilities have sustained serious psychological and physical damage from mothers and fathers who were ill-equipped to care for them. This means that genetic testing and prenatal diagnosis may provide knowledge that many will find invaluable in examining and planning their futures. Nonetheless, we remain concerned that avoiding the problems that may come with diagnosable disability by using selective abortion may ultimately erode our tolerance of difference as a society, and our conceptions of ourselves as people who should adapt and master the many turns that life brings. We fear that ultimately, children will not be served well if their opportunity for joining the human family and community rests on their having some set of cognitive and physiological characteristics. What differentiates preventing disability by abortion from preventing it by immunization is that the abortion indicates that the disability makes the child unacceptable. Susan Wendell notes that illness and disability constitute one type of departure from the cultural ideals of physical perfection and control that oppress women, and that feminism should seek to redefine social expectations to ease the incorporation of disabled people into the world.95 She also correctly observes that much of the bioethics literature takes up disability only to ask how ill or disabled one should be in order for euthanasia or withholding of treatment to be appropriate, or how "defective" or "damaged" a fetus should be before it is permissible to consider abortion. For her, such bioethical questions ask how far one can depart from a cultural ideal and still remain welcome in the human community. They are also questions about who merits membership in more intimate circles, including the family. Susan Moller Okin explores related ground. In attempting to reconcile Rawlsian notions of justice with feminist commitment to caring and empathy, she interprets Rawls's central concept of the "original position" as one requiring capacity for empathy. The "voice of responsibility, care, and concern for others,"96 and the creation of social institutions are what reduce the problems of the disadvantaged. Before the advent of screening and prenatal diagnostic technology, we might say that mothers and fathers who reproduced biologically did so behind a Rawlsian veil of ignorance. They simply expected that a genetic and

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gestational connection and the experience of living together would suffice for the growth of love. Genetic information threatens to remove the veil. Yet as read by Okin, Rawls says that loving parents are indispensable for the development of a sense of justice, since the child's moral development depends upon experiencing love and trust from parents. We are apprehensive about promoting professional and social norms that encourage the belief that membership in a family depends upon possessing a particular set of characteristics. Deciding that our society and our families cannot accommodate people with a wide range of problems and strengths does not accord with the understanding of feminism and family life we wish to uphold.

Gender and the Patient-Provider Relationship When we discussed pressures for presymptomatic testing and prenatal diagnosis, we suggested that women using the technology do so in a climate that promotes its benefits and minimizes any potential problems. Moreover, how they decide whether to undergo prophylactic mastectomy for breast cancer or how they decide whether to abort a fetus diagnosed with cystic fibrosis depends on how they construct notions of life with breast cancer or life with a child who has a particular disability. How they form their images may well be influenced by the information they receive from the experts on whom they rely. It is to this provider-patient relationship, as affected by the gender of both provider and patient, that we now turn. Unlike other medical specialties in which the provider dispenses some kind of therapy, those offering genetic services dispense information. Thus, whether the services are useful, how patients interpret the encounter, and what they do with the information can be unusually influenced by the nature of their interaction. Genetic information has traditionally been given by geneticists and female genetic counselors to women during their pregnancies as they sought prenatal diagnosis to learn about the health of their developing fetus. Research conducted on the nature of these interactions and patient satisfaction has disclosed that female geneticists and genetic counselors, like other female physicians and health professionals, spend more time in answering questions and in developing a good working relationship than males in the same provider role.97 The data also show that female counselors and geneticists tend to be less directive and opinionated in their discussions with patients than are males.98 Furthermore, female geneticists are more likely to express concern about the welfare of the extended family.99 These findings support the claim, made by others, that genetic counseling and feminism have in common the goal of breaking down barriers through communication.100 If this is


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true, these findings might mean that women have obtained services without experiencing powerlessness and a loss of their own ability to make choices about how to use what they learned. Yet that may change. More and more obstetricians and primary care physicians offer both presymptomatic and reproductive genetic testing. Thus more and more men are playing this role and with different training. This raises concerns that discussions will be briefer, and the sessions will contain more of the provider's views, with less opportunity for the patient to clarify her own. Yet even when counseling is performed by nonphysicians it may fall short of true dialogue. Counselors too display subtle biases through the types of questions asked and the information omitted and conveyed.101 A physician's directive counseling, if honest, may prove no more difficult for women to handle than a counselor's covert directiveness in a purportedly nondirective framework.102 For us, the most important problems with the communication of genetic information stem from the content of the material and the style of disclosure, especially when the material conveys traditional biases about disability, focuses simply on medical characteristics and probabilities, and includes woefully little about the lives of people with the disabilities for which tests are available.103 Thus, while we agree with others that directiveness has no place in this setting, nondirectiveness that contains limited or biased information is not a preferable solution.

Conclusion The ascendancy of genetics suggests that one's biological relationships are most important. It threatens to persuade many that biology is destiny, difference is immutable and bad, and that our only option in responding is technological. Feminist work has grappled with and rebutted each of these claims in struggling with the meaning of sex and gender. It thus has much to offer debate on genetics. Ultimately, feminist work demonstrates that we have a choice, both as individuals and as a society. Biological relationships need not always be most important. Marilyn Friedman argues that all involuntary associations of traditional family and community turn out to oppress women and others who have little power, simply because the contact is compelled and not chosen. She proposes that our social institutions should aspire to voluntary relationships such as those of friendship.104 The ideal of family life proclaims that siblings will unite to face presymptomatic tests for familial conditions; that together partners will work through the changes posed by late-onset genetic conditions; and that prospective parents will cherish children who are girls or boys, hetero- or homosexual, healthy or sick, blessed with energy and intelli-

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gence or faced with physical weakness and cognitive problems. But society cannot construct public policy based on such an ideal and feminism must be wary of that ideal, because it may hide a very different reality and be imposed on women. If feminism has one response above all others to make to these technologies, it is that women must be free and enabled to make fully informed decisions: to be tested or not, to reveal test results or not, to undergo or forgo proposed interventions, to bear or not to bear children for whatever reasons they believe appropriate for them. Even abortion for sex selection may be defended on the grounds that people deserve to choose whatever they can about the children they raise so that they and their children will receive the benefits of chosen companionship.105 While putting forward our own views about an ideal for feminism and for societal and family life, respect for women's freedom entails opposing any practice that would constrain their decisions about which level of risk they will endure for themselves and which lives they will physically nurture. Yet individual autonomy cannot be the full answer. We as a society must choose to overcome the traditional and oppressive mythology surrounding genetics—that biology is destiny, difference bad, and technology the solution. We must collectively struggle to identify the values that should govern the use of genetics. Those values should refuse to surrender social meaning to biological fact, should insist on an inclusive understanding of community, and should temper enthusiasm for wider and wider applications of technology. Women will have no true autonomy without supportive communal institutions. The community should enable families to welcome all children and should aid adults with genetic and other disabilities to live as valued members.

Notes Many people gave invaluable assistance in the preparation of this chapter. Ellen Wright Clayton suggested important avenues for exploration before the initial writing and in her comments on an early draft. She and Ruth Hubbard, Vivian Lindermayer, Abby Lippman, and Pilar Ossorio gave important comments on drafts that immeasurably aided the final product. Neil Holtzman and Barbara Bernhardt contributed a wealth of current information about the science of genetics and the practice of genetic counseling. 1. For a relatively accessible and comprehensive explanation of inheritance, see James D. Watson and John Tooze, The DNA Story: A Documentary History of Gene Cloning (San Francisco, CA: W. H. Freeman, 1981), 529-83. 2. See Ruth Hubbard and Elijah Wald, Exploding the Gene Myth (Boston, MA: Beacon Press, 1993), particularly ch. 4, for a discussion of the variability of


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expression of genes linked with dominant disorders as well as multifactorial disorders. 3. Neil A. Holtzman, Proceed With Caution: Predicting Genetic Risks in the Recombinant DNA Era (Baltimore, MD: Johns Hopkins University Press, 1989), 81. See also Barton Childs and Charles R. Scriver, "Age at Onset and Causes of Disease," Perspectives in Biology and Medicine 29 (1986): 437-60. 4. Although beyond the scope of this chapter, this category of diseases also includes some that are of particular concern to women. For example, multiple sclerosis, lupus, and some forms of depression—all of which are likely to have a genetic component—are more prevalent among women. Moreover, women with these conditions are frequently taken less seriously by the medical profession because of the tendency to associate these conditions with conversion reaction, somaticization disorder, or "hysteria." 5. Eliot Marshall, "Search for a Killer: Focus Shifts from Fat to Hormones," Science 259 (1993): 618-21. 6. The scientist and feminist perhaps most closely associated with applying feminist arguments against "anatomy is destiny" to the realm of genetics is Ruth Hubbard. See Ruth Hubbard, The Politics of Women's Biology (New Brunswick, NJ: Rutgers University Press, 1990), especially Part III. 7. Daniel J. Kevles, "Out of Eugenics: The Historical Politics of the Human Genome," in Daniel J. Kevles and Leroy Hood, eds., The Code of Codes: Scientific and Social Issues in the Human Genome Project (Cambridge, MA: Harvard University Press, 1992), 3-36, 5. 8. Ibid., 6-16. 9. Treatment for hemophilia has improved substantially in the last twenty years, but the advances are not directly related to developments in genetic testing. For a description of a child and family affected by hemophilia, see Robert Massie and Suzanne Massie, Journey, 2d ed. (New York, NY: Knopf, 1984). 10. The degree to which there will be a demand for prenatal diagnosis for adult-onset conditions (after or even instead of presymptomatic testing of the parents) will depend on the parents' and providers' perceptions of the severity of the disease, age of onset, the existence of an intervention or treatment, and how the disease affects day-to-day life. 11. Kevles, "Out of Eugenics," 17-23. 12. Walter Gilbert, "A Vision of the Grail," in Kevles and Hood, eds., The Code of Codes, 83-97, 83. 13. Ibid., 84. 14. Leroy Hood, "Biology and Medicine in the Twenty-First Century," in Kevles and Hood, eds., The Code of Codes, 136-63, 136. 15. National Research Council, Mapping and Sequencing the Human Genome (Washington, DC: National Academy Press, 1988), 1, 12-13, 45, cited in Evelyn Fox Keller, "Nature, Nurture, and the Human Genome Project," in Kevles and Hood, eds., The Code of Codes, 281-99, 294. 16. Office of Technology Assessment, Mapping Our Genes (Washington, DC: U.S. Government Printing Office, 1988), 84, cited in Keller, "Nature, Nurture, and the Human Genome Project," 295. 17. Ibid. 18. Ibid. 19. For an illustrative discussion of ethical and policy thinking as of the early 1980s, see President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Conditions (Washington, DC: U.S. Government Printing Office, 1983).

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20. For useful recent discussions of the scientific and medical advances attributed to or resulting from the Human Genome Initiative, see Kevles and Hood, eds., The Code of Codes; for representative multi-disciplinary examinations of the social, legal, and ethical issues raised by genetic research, see George J. Annas and Sherman Elias, eds., Gene Mapping: Using Law and Ethics as Guides (New York, NY: Oxford University Press, 1992). See also symposia in the Emory Law Journal 39 (3) (1990); American Journal of Law & Medicine 17 (1-2) (1991); and Houston Law Review 29 (1) (1992). 21. For a succinct discussion of differences between feminist medical ethics and mainstream approaches, see Susan Sherwin, "Feminist and Medical Ethics: Two Different Approaches to Contextual Ethics," Hypatia 4 (Summer 1989): 57-73. 22. For a recent collection focusing on the implications of prenatal genetic testing on women, see Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 1-246. 23. Rosemarie Tong, Feminist Thought: A Comprehensive Introduction (Boulder, CO: Westview Press, 1989); Eve Browning Cole and Susan Coultrap-McQuin, eds., Explorations in Feminist Ethics: Theory and Practice (Bloomington, IN: Indiana University Press, 1992). 24. Alison M. Jaggar, "Feminist Ethics: Projects, Problems, Prospects," in Claudia Card, ed., Feminist Ethics (Lawrence, KS: University Press of Kansas, 1991), 78-104. 25. Tong, Feminist Thought, ch. 1. 26. Susan Sherwin discusses the relationship of autonomy to feminist goals in No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992). Ruth Schwartz Cowan elaborates on how, for some women in the 1960s and 1970s, the development of prenatal tests for conditions such as hemophilia substantially expanded their sense of procreative choice. See Ruth Schwartz Cowan, "Genetic Technology and Reproductive Choice: An Ethics of Autonomy," in Kevles and Hood, eds., The Code of Codes, 244-63. 27. Michelle Stanworth, "Reproductive Technologies and the Deconstruction of Motherhood," in Michelle Stanworth, ed., Reproductive Technologies: Gender, Motherhood, and Medicine (Minneapolis, MN: University of Minnesota Press), 10-35, places reproductive genetic technology in the context of the larger feminist debate over the broad range of reproductive technologies, balancing the value of genetic information for would-be parents with the potential for societal and medical control of women's childbearing decisions. Other illustrative expressions of these views can be found in Abby Lippman, "Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities," American Journal of Law & Medicine 17 (1991): 15-50; and Barbara Katz Rothman, "The Tentative Pregnancy: Then and Now," Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 60-63. 28. For feminists' views of the medical profession, see Helen Bequaert Holmes and Laura M. Purdy, eds., Feminist Perspectives in Medical Ethics (Bloomington, IN: Indiana University Press, 1992); Boston Women's Health Book Collective, The New Our Bodies, Ourselves: A Book By and For Women (New York, NY: Simon & Schuster, 1992); Barbara Ehrenreich and Deidre English, For Her Own Good: 150 Years of the Experts' Advice To Women (Garden City, NY: Anchor, 1978). 29. Barbara Katz Rothman describes incidents that women in her sample of interviewees considered to be pressure in The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood (New York, NY: Viking, 1986). Although no data on the frequency of such experience have come to our attention, literature on prenatal diagnosis continues to contain reports of women who perceive


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themselves to have few options but to accept prenatal testing. Stanworth, "Reproductive Technologies and the Deconstruction of Motherhood," 31, reports that 75 percent of British obstetricians surveyed in 1985 indicated that they insisted upon abortions of fetuses affected with prenatally diagnosable disabilities or health problems. See also Nancy A. Press and C. H. Browner, "Collective Fictions: Similarities in Reasons for Accepting Maternal Serum AlphaFetoprotein Screening among Women of Diverse Ethnic and Social Class Backgrounds," Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 97-104. 30. For a discussion of the similarities and differences among feminist theories, see Tong, Feminist Thought. 31. Ruth Hubbard, "The Political Nature of 'Human Nature'," in Deborah Rhode, ed., Theoretical Perspectives on Sexual Difference (New Haven, CT: Yale University Press, 1990), 63-73. 32. Ibid., 72-73. 33. Ibid., 69. 34. Sandra Harding, "Is There a Feminist Method?" in Nancy Tuana, ed., Feminism & Science (Bloomington, IN: Indiana University Press, 1989), 17-32. 35. H. Patricia Hynes, "Lead Contamination: A Case of Protectionism and the Neglect of Women," in H. Patricia Hynes, ed., Reconstructing Babylon: Essays on Women and Technology (Bloomington, IN: Indiana University Press, 1991), 3-18. 36. Marque-Luisa Miringoff, The Social Costs Of Genetic Welfare (New Brunswick, NJ: Rutgers University Press, 1991), especially ch. 8. 37. An important communitarian voice, not exclusively or primarily feminist, is The Responsive Community, vols. 1-3, published by the Center for Policy Research, George Washington University, a journal whose editorial board includes people who describe themselves as neither liberal nor conservative but rather as people interested in finding a new ideology that emphasizes community. See vol. 1, no. 1 (1990), and the section in each issue entitled "Authoritarians, Libertarians, Communitarians." There is considerable debate about how "community" is defined, how dissent and difference should be handled, and how inter-community conflict should be negotiated. Our chapter here discusses notions of community primarily growing out of feminist writing and may diverge from other communitarians on many points. 38. Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (Boston, MA: Beacon Press, 1989) analyzes the pitfalls of trying to create a single theory of women's experience and shows that much feminist writing of the last two decades has neglected concerns of many women. Interestingly, this book itself omits consideration of women with health problems or disabilities. 39. Keller, "Nature, Nurture, and the Human Genome Project." 40. Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990) examines how the U.S. legal system deals with a great variety of differences and devalued characteristics. Chapters 1-3 present her basic framework and chapter 10 applies it to a related topic in bioethics, the treatment of disabled newborns and children. 41. Ibid., 50-52. 42. For a blistering critique of the standards of beauty confronting today's women, see Naomi Wolf, The Beauty Myth: How Images of Beauty are Used Against Women (New York, NY: William Morrow, 1991). 43. Stephen J. Gould, The Mismeasure of Man (New York, NY: W. W. Norton, 1981). 44. Keller, "Nature, Nurture, and the Human Genome Project," 295.

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45. Daniel Wikler, "Responsibility for Illness," in Donald VanDeVeer and Tom Regan, eds., Health Care Ethics: An Introduction (Philadelphia, PA: Temple University Press, 1987), 326-58, discusses the difficulties of ascribing health problems to factors over which individuals have substantial control. 46. Daniel Kevles and Leroy Hood, "Reflections," in Kevles and Hood, eds., The Code of Codes, 300-26. 47. Lippman, "Prenatal Genetic Testing and Screening;" Abby Lippman, "Led 'Astray' by Genetic Maps: The Cartography of the Human Genome and Health Care," Social Science and Medicine 35 (1992): 1469-76; Hubbard, The Politics of Women's Biology, chs. 6, 12-14. 48. Although beyond the scope of this chapter because it concerns both men and women equally, the Genome Project may increase disparities between haves and have-nots in terms of health insurance coverage for any existing treatments for genetic conditions. See Larry Gostin, "Genetic Discrimination: The Use of Diagnostic and Prognostic Genetic Testing by Employers and Insurers," American Journal of Law & Medicine 17 (1991): 109-44. 49. Norman Daniels, Just Health Care (New York, NY: Cambridge University Press, 1985). 50. Adrienne Asch, "Reproductive Technology and Disability," in Sherrill Cohen and Nadine Taub, eds., Reproductive Laws for the 1990s (Clifton, NJ: Humana Press, 1989), 69-124. 51. Sherwin, No Longer Patient. 52. Nancy Chodorow, The Reproduction of Mothering (Berkeley, CA: University of California Press, 1978); Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982); Jean Baker Miller, Toward a New Psychology of Women (Boston, MA: Beacon Press, 1986); Sherwin, No Longer Patient. 53. Carol Gilligan, Janie Victoria Ward, Jill McLean Taylor, with Betty Bardige, Mapping the Moral Domain: A Contribution of Women's Thinking to Psychological Theory and Education (Cambridge, MA: Center for the Study of Gender, Education and Human Development, Harvard University Graduate School of Education, 1988), and Carol Gilligan, Nona P. Lyons, and Trudy J. Hammer, eds., Making Connections: The Relational Worlds of Adolescent Girls at Emma Willard School (Cambridge, MA: Harvard University Press, 1990) provide further empirical research to support the claims in Gilligan's earlier book. 54. Anne Colby and William Damon, "Listening to a Different Voice: A Review of Gilligan's In a Different Voice," Merrill-Palmer Quarterly 29 (1983): 474-81 reviews research that counters Gilligan's claims about sex differences in moral orientation. An interesting and wide-ranging discussion of her ideas, including Gilligan's response to critics, can be found in Linda K. Kerber et al., "On In a Different Voice: An Interdisciplinary Forum," Signs 11 (1986): 304-33. 55. Eva Feder Kittay and Diana T. Meyers, eds., Women and Moral Theory (Savage, MD: Rowman & Littlefield, 1987) contains a valuable discussion of the philosophical implications of Gilligan's ideas. A useful overview in that volume is Diana T. Meyers and Eva Feder Kittay, "Introduction," 3-18. Virginia Held, "Feminism and Moral Theory," 111-38, and Sara Ruddick, "Remarks on the Sexual Politics of Reason," 237-60, exemplify philosophical work consonant with Gilligan's views. 56. The genetic markers that are associated with the inherited form of breast cancer are the same markers found in the inherited form of ovarian cancer. 57. As we discussed earlier, many of these disorders, while they also affect men, are more frequent in women. Although uterine and cervical cancers are


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diseases that affect many women, their mortality is not as great as that of breast cancer at this time. They are also absorbing less scientific attention. 58. The latter are called "germ-line cells." 59. People differ in their understanding of what is meant by "genetics." In any discussion of the implications of the Human Genome Project, it is important to grasp the distinction between genetics and inheritance. Not all that is genetic is inherited. Diseases that are genetic include but are not limited to those that are inherited. Many diseases can be explained by alterations in cell DNA. The degree to which a given disease is considered "genetic" depends on which cells are altered, when, and by what mechanism. When environmental exposure is sufficient to induce disease and an inherited predisposition is not a necessary condition, the disease is not likely to be considered "genetic." Refer to the discussion of genetics and inheritance in the first section of this chapter. 60. Mary-Claire King, Sarah Rowell, and Susan M. Love, "Inherited Breast and Ovarian Cancer: What Are the Risks? What Are the Choices?" Journal of the American Medical Association 269 (1993): 1975-80. 61. Y. Miki et al., "A Strong Candidate for the Breast and Ovarian Cancer Susceptibility Gene BRCA1," Science 266 (1994): 66-71. 62. R. Wooster et al., "Localization of a Breast Cancer Susceptibility Gene, BRCA2, to Chromosome 13ql2-13," Science 265 (1994): 2088-90. The BRCA1 and BRCA2 discoveries reflect the distinction between identifying markers that are linked to a gene and cloning the gene itself. Markers are identified through so-called "linkage" studies. Once mutations are directly identified, as in the case of BRCA1, it is no longer necessary to perform linkage studies. 63. See notes 22-26 above. 64. See Rebecca Dresser, "Wanted: Single, White Male for Medical Research," Hastings Center Report 22 (Jan.-Feb. 1992): 24-29. See also Robin Marantz Henig, "Are Women's Hearts Different?" New York Times Magazine, October 3, 1993, p. 58. 65. This group of feminists may not adamantly oppose the development and use of such genetic testing, but would urge caution in overstating its value. 66. As Barbara Katz Rothman notes, the word "positive" is strictly a medical term revealing that the test found what it was looking for. Those who learn that they carry genes predisposing them to serious illnesses do not view the news as "positive." See Rothman, The Tentative Pregnancy. 67. Michael Waldholz, "Stalking a Killer: Scientists Near the End of Race to Discover A Breast-Cancer Gene," Wall Street Journal, December 11, 1992, p. Al. 68. Nel Noddings, Caring: A Feminine Approach To Ethics and Moral Education (Berkeley, CA: University of California Press, 1984). 69. Jaggar, "Feminist Ethics," 99. 70. Ibid., 85. 71. We do not necessarily subscribe to such a claim. 72. Mary-Claire King, personal communication with Gail Geller, October 12, 1993. 73. John C. Fletcher and Dorothy C. Wertz, "Ethics, Law, and Medical Genetics: After the Human Genome Is Mapped," Emory Law Journal 39 (1990): 744-809. 74. To our knowledge the first statement of these ideas within an explicitly feminist framework can be found in Michelle Fine and Adrienne Asch, "The Question of Disability: No Easy Answers for the Women's Movement," Reproductive Rights National Newsletter 4 (3) 1982: 19-20. For similar views see Anne

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Finger, "Claiming All of Our Bodies: Reproductive Rights and Disabilities," and Marsha Saxton, "Born and Unborn: The Implications of Reproductive Technologies for People with Disabilities," in Rita Arditti, Renate Duelli-Klein, and Shelley Minden, eds., Test-Tube Women: What Future for Motherhood? (Boston, MA: Pandora, 1984), 281-97, 298-312. The position espoused in these works and in Asch, "Reproductive Technology and Disability," resembles but is not identical with the views of such feminists as Ruth Hubbard, Abby Lippman, and Barbara Katz Rothman. 75. Dorothy C. Wertz and John C. Fletcher, "A Critique of Some Feminist Challenges to Prenatal Diagnosis," Journal of Women's Health 2 (1993): 173-88 cites and seeks to rebut both the disability rights and feminist objections to prenatal diagnosis. We believe that it contains no material that alters our views, and this section of our chapter constitutes a rejoinder to this critique. 76. Betty B. Hoskins and Helen Bequaert Holmes, "Technology and Prenatal Femicide," in Arditti, Duelli-Klein, and Minden, eds., Test-Tube Women, 248, quoted in Dorothy C. Wertz and John C. Fletcher, "Sex Selection Through Prenatal Diagnosis: A Feminist Critique," in Holmes and Purdy, eds., Feminist Perspectives in Medical Ethics, 240-53, 243. 77. Beverly Wildung Harrison, "Feminist Realism," Christianity and Crisis 46 (1986): 233-36. 78. Wertz and Fletcher, "Sex Selection Through Prenatal Diagnosis." 79. We are not considering in this discussion of selection for sex those occasions when sex selection is part of an effort to avoid the birth of a child with a disability. For our purposes, prenatal diagnosis of sex to forestall the birth of a child with an X-linked disorder would more properly be examined below, in the section discussing diagnosis for disability. 80. See Dean H. Hamer et al., "A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation," Science 261 (1993): 321-27, and "The Search for Sexual Identity," dialogue by Ruth Hubbard and Chandler Burr, New York Times, August 2, 1993, op-ed page. See also W. Byne, "The Biological Evidence Challenged," Scientific American (May 1994): 50-55. 81. In addition to the sources cited elsewhere in this chapter, see the discussions in such bioethics readers as VanDeVeer and Regan, eds., Health Care Ethics, and Tom Beauchamp and James L. Childress, Principles of Biomedical Ethics, 4th ed. (New York, NY: Oxford University Press, 1994). Given their opposition to sex selection through prenatal diagnosis because the practice would undermine equality, it is noteworthy to see John Fletcher and Dorothy Wertz in "Ethics, Law, and Medical Genetics" endorse genetic technology to alleviate problems of disability in society. Discussing the wisdom of mass screening for cystic fibrosis (CF), Arthur L. Beaudet writes: Although some would argue that the success of . . . [a screening] program should be judged solely by the effectiveness of the educational program (i.e., whether screenees understood the information), it is clear that prevention of CF is also, at some level, a measure of a screening program, since few would advocate expending the substantial resources involved if very few families wish to avoid the disease. Arthur L. Beaudet, "Invited Editorial: Carrier Screening for Cystic Fibrosis," American Journal of Human Genetics 47 (1990): 603-05, 603. 82. Asch, "Reproductive Technology and Disability."


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83. To our knowledge, the first collection of scholarly essays devoted to the topic of women with disabilities was Mary Jo Deegan and Nancy A. Brooks, eds., Women and Disability: The Double Handicap (New Brunswick, NJ: Transaction Books, 1985). The next multi-disciplinary volume is Michelle Fine and Adrienne Asch, eds., Women with Disabilities: Essays in Psychology, Culture, and Politics (Philadelphia, PA: Temple University Press, 1988). See especially in that volume Adrienne Asch and Michelle Fine, "Introduction: Beyond Pedestals," which presents a socialist-feminist analysis of feminism and disability issues, and considers tensions that have impeded the full inclusion of women with disabilities in the women's movement. 84. Minow, Making All the Difference; Sherwin, No Longer Patient. Neither author explicitly analyzes the topic of selective abortion for disability from this social-problem perspective. 85. Harrison, "Feminist Realism," 236. 86. Laura M. Purdy, "Genetic Diseases: Can Having Children Be Immoral?" in John D. Arras and Nancy K. Rhoden, eds., Ethical Issues in Modern Medicine, 3d ed. (Mountain View, CA: Mayfield Publishing Company, 1989), 311-17, and "Loving Future People," in Joan Callahan, ed., Reproduction, Ethics and the Law (Bloomington, IN: Indiana University Press, forthcoming.) 87. Wertz and Fletcher, "Sex Selection Through Prenatal Diagnosis." 88. Huntington's disease is an exception, perhaps because it leads inexorably to profound cognitive, emotional, and physiologic disability and to death. 89. Wertz and Fletcher, "A Critique of Some Feminist Challenges to Prenatal Diagnosis." 90. Citations to and commentary on this literature can be found in Asch, "Reproductive Technology and Disability;" Alan Gartner, Dorothy Kerzner Lipsky, and Ann P. Turnbull, Supporting Families with a Child with a Disability: An International Outlook (Baltimore, MD: Paul H. Brookes, 1991); and Ann P. Turnbull and H. Rutherford Turnbull, III, with Jean Ann Summers, Mary Jane Brotherson, and Holly Anne Benson, Families, Professionals, and Exceptionality: A Special Partnership (Columbus, OH: Merrill Publishers, 1986). 91. A useful volume illustrating the diversity of feminist thought on reproduction is Joyce Trebilcot, ed., Mothering: Essays in Feminist Theory (Mayfield, CA: Rowman and Alanheld, 1983). See also Virginia Held, "Birth and Death," Ethics 99 (1989): 362-88. 92. For some X-linked disorders, such as the Fragile-X syndrome (a form of mental retardation), daughters can inherit the condition from their mothers. 93. Rothman, The Tentative Pregnancy. 94. The same illusions may tarnish partner and family relationships as well, and presymptomatic testing could be subject to similar commentary. We focus here on the parent-child relationship because of the unique vulnerability of the child, who must depend totally on acceptance from some adult in order to survive and thrive. 95. Susan Wendell, "Toward a Feminist Theory of Disability," Hypatia 4 (Summer 1989): 104-23. 96. Susan Moller Okin, "Reason and Feeling in Thinking about Justice," Ethics 99 (1989): 229-49. 97. Debra Roter, Mack Lipkin, and Audrey Korsgaard, "Sex Differences in Patients' and Physicians' Communication During Primary Care Medical Visits," Medical Care 29 (1991): 1083-93; Carol S. Weisman and Martha A. Teitelbaum, "Women and Health Care Communication," Patient Education and Counsel 13

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(1989): 183-99; Nancy Zare, James R. Sorenson, and Timothy Heeren, "Sex of Provider as a Variable in Effective Genetic Counseling," Social Science and Medicine 19 (1984): 671-75. 98. Gail Geller et al., "Incorporation of Genetics Into Primary Care Practice: Will Physicians Do the Counseling and Will They Be Directive?" Archives of Family Medicine 2 (1993): 1119-25. 99. Dorothy C. Wertz, "Providers' Gender and Moral Reasoning," Fetal Diagnosis and Therapy 8 (Supp. 1) (1993): 81-89. 100. June A. Peters, "Feminist Theology and Genetic Counseling: Out of the Closet and Into the Clinic," in Barbara Biesecker, Patricia A. Magyari, and Natalie W. Paul, eds., Strategies in Genetic Counseling: Religious and Ethnic Influences on the Counseling Process, Proceedings of the Fifth Annual Education Conference of the National Society of Genetic Counselors, Birth Defects: Original Articles Series 23 (1987): 271-76. 101. Seymour Kessler, "Psychological Aspects of Genetic Counseling: Thoughts on Directiveness," Journal of Genetic Counseling 1 (1992): 9-17; Angus Clarke, "Is Non-directive Genetic Counseling Possible?" Lancet 338 (1991): 9981001. For illustrations of omissions and subtle directiveness in recommendations for counseling, see Sherman Elias and George J. Annas, "Generic Consent for Genetic Screening," New England Journal of Medicine 330 (1994): 161113, and American Medical Association's Council on Ethical and Judicial Affairs, "Ethical Issues Related to Prenatal Genetic Testing," Archives of Family Medicine 3 (1994): 633-42. 102. For information on counselor-client communications and the biases that creep into them, see Rothman, The Tentative Pregnancy, and Sherman Elias and George J. Annas, Reproductive Genetics and The Law (Chicago, IL: Yearbook Medical Publishers, 1987), 40, who write: "although most counselors claim to use a nondirective approach, few deny that an element of counselor bias always exists." 103. Gail Geller and Nancy E. Kass, "Informed Consent in the Context of Prenatal HIV Screening," in Ruth R. Faden, Gail Geller, and Madison Powers, eds., AIDS, Women, and the Next Generation: Towards A Morally Acceptable Public Policy on HIV Screening of Pregnant Women and Newborns (New York, NY: Oxford University Press, 1991), 288-307; Abby Lippman and Benjamin S. Wilfond, "Twice-told Tales: Stories about Genetic Disorders," American Journal of Human Genetics 51 (1992): 936-37. For more detail on genetic counseling, see Dianne Bartels, Bonnie S. Leroy, and Arthur L. Caplan, eds., Prescribing Our Future: Ethical Issues in Genetic Counseling (New York, NY: Aldine De Gruyter, 1992). For proposals to revamp the type of information provided by counselors, see Asch, "Reproductive Technology and Disability," especially 89-92 and 108-17. 104. Marilyn Friedman, "Feminism and Modern Friendship: Dislocating the Community," Ethics 99 (1989): 275-90. 105. Mary Anne Warren, Gendercide (Totowa, NJ: Rowman and Allanheld, 1985).

12 Justice in the Allocation of Health Care Resources: A Feminist Account Hilde Lindemann Nelson and James Lindemann Nelson

American health care is so conspicuously unjust that the need for reform is now politically as well as philosophically inescapable. The numbers that testify to this need are becoming grimly familiar but are still worth rehearsing. In 1991 the United States spent 13.2 percent of its gross domestic product (GDP) on health care—$751.8 billion—more than was devoted to education and defense combined. The expenditure curve is rising steeply. If its slope is unchanged, by the century's end 18 percent of our substance will be devoted to health care, while education, housing, the arts, and other social goods will have to go underfunded.1 Despite the glut of spending, over 14 percent of those living in the United States have no health insurance, and an even greater percentage—amounting to perhaps 60 million Americans—are significantly underinsured.2 But the full story of the inequities in our system is not revealed by these figures, and will remain untold unless the special position of women and other oppressed groups is carefully and sympathetically perceived. Further, the best options for responding to those inequities are not likely to be visible from perspectives that implicitly take on the moral and political values of powerful white men. Unfortunately, despite signs that Americans are poised to begin a major project of health

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care restructuring, feminist ethics has yet paid scant attention to an issue that will have a deep impact on the lives of millions of women. The early theoretical analyses have largely been nonfeminist ones— most significantly, the work of Daniel Callahan3 and Norman Daniels.4 Callahan's approach is distinctive for construing the problem of health care allocation as fundamentally one of values: we have lost sight of the appropriate role that health care should play in our culture, in part because we have lost any shared sense of what our lives, and the communities in which they are embedded, mean. Appropriately tempering the ambitions of medicine requires recapturing some notion of the ends of medicine that is richer than mere satisfaction of individual desire. Daniels, for his part, has erected a liberal theory of justice in health care based on equality of opportunity: we are entitled to that amount of health care required to secure our enjoyment of the "normal opportunity range" for our society. The work of Callahan and Daniels has been very important in inaugurating a sophisticated discourse on health care justice, and feminists can learn much from it. But neither writer has attempted to reckon in depth with the fundamentally gendered character of social reality. Here we aim to incite a more vigorous feminist discourse by demonstrating the limits of nonfeminist approaches to the topic, by delineating the form of a positive feminist account of justice in the allocation of health care resources, and, overall, by motivating the project of a feminist analysis of justice in health care in the face of the skepticism it is sure to encounter.

Answering the Skeptic One source of skepticism might come from a superficial acquaintance with current feminist writings. Feminist ethicists—perhaps especially those interested in health care—have displayed a great deal of interest recently in "care ethics," often presented as an alternative to "justice ethics." This may leave the mistaken impression that feminism is solely concerned with the morality of the "private" realm.5 In fact, feminists have often challenged the very distinction between the public and the private realm. The core concern of all varieties of feminist praxis—understanding and ending women's subjugation—has led to important insights into the nature of justice. Some of these insights emerge out of the very activity of trying to develop an ethics that takes into account both the moral norms that have been valorized by masculinist traditions and those the traditions have given short shrift, in part because they are associated with the experiences of women. Feminists have had many different things to say about justice. Susan Moller Okin, for example, has attempted to feminize John Rawls's ap-

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proach to justice by bringing impartialist concerns into the setting of the family.6 Lawrence Blum, on the other hand, has tried to show how a care perspective can be a thoroughgoing alternative to impartialist justice. He does not suggest that the justice perspective should be replaced by care, but he does maintain that justice has no privileged position in their intercourse.7 From the rich and sometimes conflicting feminist debates on justice and care emerge certain common motifs. An especially significant one—the importance of particularity and acute perception—has been well articulated by Martha Nussbaum. Being one on whom "nothing is lost," as Nussbaum has put it, serves as an important feature of a defensible "ethics of care;" after all, we have to recognize what we should care about, and what kind of care is needed.8 The emphasis on finely attentive perception, then, seems specifically tailored to intimate rather than social relationships. But such a focus also reveals elements of the social context of relationships that have been suppressed or obscured— for example, the myriad ways, some blatant, some subtle, in which women's agency is denied, limited, and frustrated. Health care contexts are often of this kind. While it is now widely lamented that tens of millions of Americans are without health insurance, it is less widely known that women in their mid-forties and older are far more likely than men of similar ages to be without insurance, either because they are more often part-time employees or because their coverage depended upon their relationship with a man, and the coverage ceased when the man died or otherwise left the relationship.9 Thus, we see that attaching health care insurance to employment, which might seem gender-neutral on its face, actually is a part of the systematic disadvantaging of women—a point to which we will return. The insistence on acute and loving perception as a central moral virtue highlights the need for seeing more carefully what is, and imagining more responsibly and creatively what might be for our lives as a community, as well as our lives as individuals.10 Another source of skepticism is the view that feminism's most crucial social impact has been located in its disruptive tendencies, its ability to unsettle consensus, its insistence that women finally be taken seriously. In large part because of the impact of feminist discourse and action, it is hard for anyone with even minimal powers of perception and a modicum of good will to deny that women are victims of bias; there is no reason to expect health care allocation to be magically free of such an endemic social evil. But, it might be alleged, when it comes to health care reform, consensus is already unsettled. Everyone knows that the system is unjust; no one denies that its injustice embraces women, perhaps particularly. What is needed now is not feminism's tendency to disrupt, but a set of moral ideas rich enough to guide change. There seems no special place for feminism in this enterprise,

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apart from making the necessary but insufficient demand that women are no longer to be slighted. Bringing to attention unsettling, previously suppressed data does not begin to exhaust feminism's contribution to health care reform. Like other feminists we maintain a skepticism of our own about the ability of prevailing theories of justice to address adequately questions of equitable access to the goods of life; such theories characteristically either reflect the unrealistically atomistic picture of human relationships that is presumed in the social contract tradition,11 or too uncritically assume (as communitarian theories of justice do, for example) that everyone in society has a similar stake in the "common weal."12 Further, we share the feminist suspicion regarding prevailing social institutions in general. Feminist theorists, working from a perspective that standard social structures tend to marginalize, will have little reason to take those structures quite as seriously as theorists who are comfortably at home inside them. Feminist analysis points out, for example, that the disciplinary boundaries we maintain in health care, such as the distinctions between physicians and nurses and the distinction between primary- and specialty-care physicians, arguably frustrate efficiency and reinforce hierarchy, and thus should be challenged in a justice-motivated reorganization. Much of the leading work on the ethics of health care, on the other hand, tends to start from standard theories of justice and to accept equably enough the relationships of power and reward in which health care is delivered.13 But this is only half an answer to the skeptic. What, it will be asked, does feminism want to put in place of all those dubious patriarchal theories and institutions? What theories of justice of the scope and stature of Rawls's or Robert Nozick's does feminism have to offer?

Feminism and Theories of Justice As our introductory remarks have already suggested, feminism illuminates the requirements of justice in at least two important respects. Feminism expands moral vision, offering a way of seeing otherwise obscured injustices. While these may be salient from the point of view of many conceptions of justice, a patriarchial society has not always seen clearly what its own best accounts of the moral life imply. Further, as feminism grapples with the significance of gender difference, it also cultivates a heightened sensitivity to other kinds of difference— race, ethnicity, age, social class. It asks not only, "Where are the women in this picture?" but also, "Where are the children? The destitute? The African Americans? The Latinas?" Feminism also poses theoretical challenges to reigning conceptions of justice, identifying as morally important certain considerations ig-


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nored by those accounts. A crucial task for feminist theory is to acknowledge male bias and to correct for it, not only in prevalent applications of received views of justice and not only in the prevalent theories of justice themselves, but also in the assumptions about the nature of people and relationships that underlie them. While the complexity of this task ensures that feminism will not speak with one voice on these matters, certain powerful themes, such as the importance of relationships and the realities of exploitation and oppression, recur. A theme attracting the attention of many feminist theoreticians is the construction of a feminist synthesis between individualist and communitarian approaches to justice. As Marilyn Friedman,14 Seyla Benhabib,15 and Iris Marion Young16 have lately argued, there is a middle way between the image of human beings as social atoms linked together only by contractual bonds and the image of human beings as solely social beings with no individual differences among them. Both these images, and the conceptions of morality built upon them, are threatening to women. In their place, a conception of persons and their relationships that stresses neither the complete opaqueness nor the complete transparency of selves can be articulated, and can serve as the basis for a notion of justice that accomplishes what Susan M. Wolf has referred to as "nesting rights in a community of caring."17 The suspicion about existing social structures we alluded to earlier, as well as concern with understanding of the self's relationship to her community, is broadened into a rich theoretical critique of reigning conceptions of justice in Young's book, Justice and the Politics of Difference. She rejects the idea that distribution should be the main theme for discussion of justice, as the focus on redistributing goods within a system ignores the oppression and domination built into the system itself. An account of justice that sees the prevailing system not simply as "benignly neglectful" of women, minorities, and the poor, but as positively hostile to them, must put its focus first on power rather than on how goods and services are handed out. If the account of justice begins with an understanding of oppression, it can call into question the structures in which goods are produced and assigned value, as well as how they are distributed. Further, she insists on the significance of group membership in the lives of individuals. Because age groups, ethnic groups, religious groups, and the like are not simply collections of people but fundamentally intertwined with the identities of the individuals belonging to them, there is a need for a theory of justice that captures their collectivist nature. Finally, the analysis of difference itself is an important theme. To restate Martha Minow's well-known "dilemma of difference," public policies that ignore differences between a dominant group and groups with less power tend to create a false neutrality that favors the dominant group: its characteristics are taken as the norm, while groups with

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other characteristics are marked as deviant. On the other hand, if public policy focuses explicitly on difference it may perpetuate the oppression and marginalization the group has experienced in the past.18 Many feminist theorists have begun to reflect deeply on how participation in various social groups can be morally relevant without being the ground for invidious forms of discrimination. Perhaps equally important is attention to differences among individuals within a given social group. As Elizabeth Spelman has pointed out, women, for instance, are never only women, but also rulers or slaves, artisans or academics, poor, black, or Jewish, inhabitants of particular societies in particular eras. When we forget this, the "essence" of the group becomes a norm against which those who do not fit will be measured and found wanting.19 While none of these writers discuss health care allocation in any depth, much of their work is richly suggestive for the task of constructing feminist theories of justice in health care allocation. Feminism is a movement that insists on—even celebrates—its theoretical diversities. But it also tends to be impatient with the demand for grand totalizing theories and strategies, and so it allows for a certain eclecticism in practical reasoning. Out of its sympathy for the position of women, its skepticism about patriarchial programs, its emphasis on the relational character of human identity, and its concern about the appropriate use of power, feminist thought and practice establish several guides for constructing just allocation systems. One guide might be called a kind of realism: feminist theory, as an articulation of the experience of oppressed people, accepts the reality of limits, is careful to defend women from disproportionate burdens arising from those limits, and does not tend to rosy conclusions. A further guide can be found in attention to women's experience: just allocation systems must honor the moral significance of such experience and be sensitive to the diverse moral histories of the many communities served by the schemes. Being Latina, or lesbian, or an African American woman is, or ought to be, of deep importance to any serious account of justice, and to any social system with aspirations to justice. Finally, feminism insists that distributive schemes must be guided by attention to patterns in the abuse of power, and hence incorporate elements that resist unnecessary hierarchies of authority and instead aim at empowering people. Grass-roots democratic structures have the potential to play a significant role in the shaping of just allocation policies, and hence should be an important part of determining who gets what kind of health care. These ideas can provide the basis for a theory of justice in health care distribution that is constructed more like a mosaic than like a vault, to use Annette Baier's lively image.20 That is to say that the theory will


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be constructed less by building up from a cornerstone concept and more by piecing together many smaller notions, shaping an account that conforms itself to the variegated contours of the problems it attempts to resolve.

Feminist Allocation: Justly Distributing the Pain In anything that could remotely count as a just restructuring of the health care system someone is going to get hurt, and hurt badly. Efforts to eliminate waste and improve the efficiency of the delivery of health care services are, of course, essential to reforming the system, but given limited resources and the need to fund social goods other than health care, they will not do the trick single-handedly. Even largescale structural changes—such as the development of a monopsonistic (single-payer) system, which could save over 10 percent of the health care budget by eliminating the wasteful administrative work of processing claims by hundreds of distinct third-party payers—will be insufficient.21 A rapidly aging population, along with the epidemics of AIDS and drug use in the United States, and the need to include the tens of millions of people currently cast off from the system, virtually guarantee that a reconfiguration of health care with any serious aspirations to justice will deny potentially beneficial care to many people. Any reform must vigilantly ensure that when beneficial care must be denied, the burden does not then fall unjustly on any one group of people. Feminism can be expected to play a particularly important role in this vigilance. As an illustration, consider what happens when cost containment strategies provide incentives for hospitals to send their patients home "quicker and sicker." Someone at home must continue the care of these patients. Women are much more likely than men to put the needs of their families ahead of paid work, and they are paid less for the work they do outside of the home (as well as nothing at all for the work they do inside the home). The economics of the family thus tend to dictate that the adult males' higher income not be jeopardized, and that the women, who have less pay to lose, stay at home with those in need of care. Yet staying at home only marginalizes women further in the work force, and so the cycle continues.22 A reallocation system that perpetuates this cycle rather than breaking it is not just.

Attending to Difference Because women and men are biologically and socially dissimilar, women are differently situated with respect to the health care system than are men. Women's needs, and the importance assigned to them,

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are different as well. In a culture that persists in taking men as both the empirical and the moral norm, changes in the status quo—like the status quo itself—place women at risk for disproportionate harms. With regard to the health care system, women's history of suffering injustice at its hands raises the possibility that women are justly entitled to special consideration as the system is restructured—a kind of compensatory justice in health care. A perspective that does not recognize and challenge the social habit of construing male experience as the gold standard requires feminist correction. A feminist perspective on resource allocation should attend to three sorts of difference between men and women:

Differences in Men's and Women's Lived Experience Great differences exist, of course, among women's experiences of life. The experience of an Atlanta corporate executive is very different from a south Georgia sharecropper with three small children. But the norm of the average patient that underlies many of our social arangements for health care is that of a white, middle-class male. The corporate executive more closely resembles him than the sharecropper does, yet the sharecropper, because of her poverty and the children she cares for, may be more typical of women in general than the executive is. Unless we take the lived experience of the sharecropper into account, our allocation of health care will pose obstacles of access to women. One obstacle of this kind may be called "rationing by ordeal." It works like this: the Atlanta executive (a white, thirty-year-old, Harvard-educated woman) and the sharecropper (a black, thirty-yearold, eighth-grade-educated woman) both discover they are pregnant. The Atlantan receives adequate coverage through her private health insurance and consults an obstetrician on Peachtree Street, two blocks away from where she works. The sharecropper's care is paid for by Medicaid, but her baby will have to be delivered in Waycross, fifty miles away, where the nearest hospital is located. To find a physician who will accept Medicaid patients, the sharecropper, who has no car or telephone, has to wait for a day when her brother-in-law can take her into town in his pickup, as the Greyhound bus no longer runs past her house. On the third try she finds a doctor who will care for her, and she makes an appointment to see him in five weeks, his earliest available opening. When the day comes, her sister, who cared for her toddler and her four-year-old the last time, has hurt her back and can't look after the children, so the sharecropper brings them along. She waits for three hours to see the doctor, whose waiting room is badly overcrowded. The toddler is fractious. The four-year-old has nothing to do and picks fights with his sister. The doctor tells her she is anemic and that her baby could be born underweight if her vaginal infection


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doesn't clear up. He would like to see her in two weeks. She and the children must wait another two hours for her brother-in-law to finish his business before they can all go home. She can't face another day like this and misses her next appointment, thereby slightly relieving the overcrowding in the doctor's office. While poor men are certainly not immune to the impact of rationing by ordeal, careful attention to this woman's experience reveals that lack of private insurance may be only one among many factors barring her from equitable access to health care. Both individual men and society generally have left the full burden of child care on her shoulders. This further encumbers her attempts to care for herself; both she and her children suffer.

Differences in Perceived Worth The second difference between men and women that a feminist account of resource allocation will incorporate is the difference in gender socialization, including the difference in perception of male and female worth. The problem has surfaced most visibly in recent studies indicating that when women experience renal failure, they receive fewer kidney transplants than men. Indeed, women between the ages of fortysix and sixty are only half as likely to receive a transplant as men of the same age.23 A study done in 1987 also showed that, all things being equal, men were 6.5 times as likely to be referred for cardiac catheterization—a prerequisite for coronary bypass surgery—than women, although men have only three times the likelihood of having coronary heart disease. A further study conducted in 1991 reported the same discrepancy.24 The difference in perception of male and female worth, implicit in the assumption that the norm for a human being is to be male, has made serious mischief in medical research as well. One reason why physicians may be discriminating against women when it comes to kidney transplantation and bypass surgery is that they lack adequate data. Research into cardiovascular disease has concentrated almost entirely on men, even though the disease is the leading cause of death in women in the United States.25 A major federal study on health and aging included only men during its first twenty years, although twothirds of the elderly are women.26 A study demonstrating the effectiveness of aspirin in preventing migraine headaches involved male subjects only, although women outnumber male migraine sufferers three to one.27 Most notoriously, an NIH-funded pilot project on the impact of obesity on breast and uterine cancer excluded women altogether from its research population.28 It has been argued that studies on men produce "cleaner" data, as the estrogen cycles of women complicate the picture. But this is only to say that deviations from the male norm

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are not worth studying—an assumption that is irrational, given the need to treat women as well as men. A feminist account of resource allocation would challenge the assumption that male subjects are the norm for human research.29 Even if we were to achieve a just distribution of resources for research, we would still have to grapple with the economic implications of women's perceived worth. Women earn only 64 cents for every dollar earned by a man, and the false gender equality of present divorce laws, coupled with a divorce rate of just over 50 percent, is a further cause of impoverishment for women.30 The illnesses associated with poverty, too, fall disproportionately to women. But there is an additional economic factor at play. If altering one's work schedule to accommodate dialysis, for example, is thought to be more difficult for men than for women because men are more indispensible at work, and if a kidney transplant is less cumbersome than dialysis, there will be social pressure to transplant men over women. If a man's financial contribution to the household is more critical than his wife's, and if coronary bypass surgery is a more efficient and immediate solution to heart disease than drug therapy, surgery will be seen as more crucial for men than for women.31

"Brute Physical" Differences between Women and Men The most obvious difference between men and women is, of course, physical, and of bodily differences, the reproductive ones in particular have assumed major social importance. As we think about resource allocation for reproduction we must consider the impact on women of such sophisticated and relatively high-tech services as prenatal screening, assisted reproduction, and fetal surgery, but we must also place a much higher priority on ordinary prenatal care. Such care not only prevents maternal morbidity and mortality, it also increases the odds against low birthweight in the newborn. The prudent course is surely to reduce the need for therapies such as neonatal intensive care by doing all we can to ensure every pregnant woman good prenatal care, including drug rehabilitation where necessary. The "biological" fact that women tend to live longer than men—by an average of 7.8 years—is in part a socioeconomic and cultural fact; in addition to estrogen and other physical factors, the housework, gardening, and family care that have traditionally been relegated to women may give meaning and worth to a woman's old age and thereby prolong not only her interest in life, but life itself. Longevity, however, is often attended by frailty and chronic illness. How many of our medical resources, then, ought we to devote to the aged? Providing good long-term care and honoring the old are surely preferable to


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a cascade of therapies futilely aimed at staving off death permanently. For this reason Callahan urges the start of a social dialogue on the proper relative social roles of the old and the young. In his view, the old ought to subordinate any interest in the indefinite prolongation of their lives to the interests of the young, as long as their own needs for dignity and an acceptable quality of life are recognized.32 Feminist voices in this dialogue must point out that for every 100 men over the age of sixty-five there are 148 women.33 Moreover, the call for altruistic self-sacrifice by the old may reinforce patterns of gender socialization that have instilled in women the habit of giving way to others, and in men the habit of taking from women. Many women who are now elderly offered the best food at table to their fathers and brothers, forwent a college education so their brothers could have it, deferred to their husbands in the matter of careers, and did without certain goods so their children could have a good life. Many of them then went on to raise their grandchildren and to nurse their husbands through the last illness. These gender-influenced patterns of deference, along with simple demographics, raise concern as to whether agebased rationing is actually an instance of discrimination against women. Nancy Jecker has argued that it is. As the population of older adults includes more women than men, a policy of health care rationing based on age places a disproportionate burden on women. Yet this is a particularly vulnerable and disadvantaged group: the poverty rate among elderly women is the highest of any age group in the United States. In effect, age-based rationing tells these women that their interests are not as important as those of younger age groups with more men in them.34 If Jecker's analysis is correct, then this kind of rationing stands as a paradigm of exactly what we wish here to identify and avoid: reforming health care in ways that distribute the resulting burdens unjustly. In reply, Callahan might well point out that his proposals are not addressed to the current generation of elderly people, but to those now young, who are invited to accept such a rationing system for themselves when they grow old. Further, he has underscored that rationing lifesaving care by age must await equitable access to health care for all and substantial enhancement of the care provided to the elderly to better the quality of their lives.35 However, the proposal still seems objectionable, in that women will contribute disproportionately to achieve this benefit in any plan based on age. As a cost-containment proposal, Callahan's age rationing scheme functions not so much by saving money on end-of-life care as by redirecting medical research away from a project that can have no inherent limit

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and that threatens to bankrupt the system in the long run—namely, the effort to extend life indefinitely. This suggests a compromise between Jecker and Callahan, acceptable from a feminist position. Health care spending should be redirected away from high-technology, acute care interventions toward measures that enhance the life of the elderly. Research should shift as well, away from continued life extension and toward life enhancement. But in deference to women's greater longevity and the need to correct for the sexism that has trammeled their opportunities for self-development, women should be eligible for lifesaving interventions for a longer period than are men. That is to say, if the cut-off age for such interventions is near the end of the eighth decade, as seems suggested in Setting Limits, set that as the standard for men, while allowing women access to such care into their ninth decade.

Concrete Proposals for Allocation The themes articulated above suggest some concrete features of just allocation schemes. Here we offer specific recommendations that deal with funding, with the allocation of resources within the health care system, and with the rationing of resources to the health care system. In the course of developing these suggestions, the significance of democratization and empowerment will emerge.

Funding Access to medical care, if we take women's lived experience into account, will not be based on health insurance obtained through paid work. First of all, employment by no means guarantees access to care; in 1988, 85 percent of the uninsured consisted of workers or their family members.36 These workers tend to be women who work part time, in temporary jobs, or in service jobs that allow them to accommodate their families but do not provide insurance benefits. While 80 percent of professional and managerial workers have group insurance, for example, only a third of service workers do.37 And because women change jobs more frequently than men, they are more likely to be denied coverage under the "preexisting condition" clause found in 57 percent of employer insurance policies.38 A further problem with using the work place as the means of access to health care is that for small businesses, one sickly employee can have a major impact on the risk pool and drive premiums out of reach. This puts economic pressure on the business to follow discriminatory hiring practices, as managers try to weed out bad insurance risks. There will be a hiring bias not only against older people, but also against women who could bear children. In fact, because studies seem to indicate that women receive more health care than men overall— more examinations, laboratory tests, blood pressure checks, drug pre-


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scriptions39—a savvy manager would, for insurance reasons, do well to hire only men. The reasons why women get more care are unclear. Possibly they have more illnesses or the illnesses they have require more care. Possibly their lower socioeconomic status is a contributing factor, as poverty is associated with poor health. It has also been suggested that women live longer than men in part because they are more attentive to bodily changes and more responsive to health matters, while men, socialized differently from women, resist seeking care until a health problem has become acute.40 However this may be, employment-based health insurance would seem to have a negative impact on the health care of women, children, the elderly, and the poor. If employers were mandated to offer health care insurance to all workers, many of these difficulties would, of course, be removed. Yet unless such coverage embraced part-time workers, adjusted itself to patterns of entering and leaving the paid work force that are more typical of women than of men, and were supplemented by decent provisions for the unemployed, it would still not represent a sufficiently just response. If, for example, care for the unemployed were of a significantly lower standard than that available to the employed, any injustice in the distribution of jobs would be compounded by injustice in the distribution of high quality health care. This would differentially threaten women, people of color, the disabled, and all those whose reception in the marketplace has historically been less than warm. Further, even if the distribution of jobs were just, the distribution of health care might well remain unjust if—as seems plausible-— the just distribution of jobs is based on standards such as ability, merit, and industriousness, while the just distribution of health care is based on a different kind of standard, such as need.41 For these reasons, as well as for reasons of economic efficiency, our best course is to avoid the work place altogether and move to some form of national health insurance.

Allocation of Resources within the Health Care System Once the source of funding for health care has been established, how will the money be allocated? What proportion of it will go to primary care, and what to research? Will more long-term care be relegated to the home? What can we afford for prevention? Mechanisms through which the money might be allocated could take several forms. For instance, tax revenues could be distributed to the states according to population. The states in turn would distribute revenues to county departments of health and human services, which would allocate them locally within the spirit (as well as the letter) of federally established guidelines, funding clinics, hospitals, long-term care facilities, and

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other items we will discuss below. Some such system would provide flexibility of response to local conditions, but would also have the force of national consensus behind it. Whatever the particular form the system takes, a feminist perspective can offer it two pieces of advice: Demedicalize where possible, and focus on outcomes rather than services. A. Democratization and Demedicalization Feminism is concerned not simply with the just distribution of social goods, but with the just structuring of power. What we are calling here the democratization and demedicalization of the health care system reflects this interest. The unwillingness to place total and unquestioning faith in mainstream, male-dominated medicine led to the formation of the women's self-help health movement and groups such as the Boston Women's Health Collective.42 The attempt to democratize the doctor-patient relationship by a more equitable sharing of information and power, to take more responsibility for one's own health, and to participate actively and knowledgeably in medical decision making has attracted men as well as women and is an experiment that could surely be implemented on a larger scale. Women's movements have been most successful, perhaps, in democratizing and demedicalizing childbirth. The old obstetrical model under which the birthgiver was hospitalized and anesthetized came about because women and their physicians shared a faith in the practical science of medicine to provide a speedier and less painful birth than had been women's lot through most of history.43 But these women also became patients, as opposed to agents. Passive, indeed unconscious, divorced from their own bodily processes and from the experience of childbirth, they surrendered control over childbirth entirely. It was not until the 1940s that a few women began to question whether birth was typically so pathogenic that it always required hospitalization and a physician in attendance. The Lamaze method, popularized in this country in the 1970s, brought the birthgiver's partner into the delivery room and permitted a more active experience of birth, yet as its hospital orientation attests, the professionals who presided over this method still viewed birth as a potential disease. The return to the older practice of midwives demedicalized the experience even further and democratized it by permitting the patient and professional to exert more equal control, while at the same time cutting childbirth costs by about half. The number of certified nurse-midwives grew from 2,550 in 1972 to 3,959 in 1987, in which year they conducted 2.5 percent of all deliveries in the United States.44 A fifth of these midwives practice their profession outside the hospital, either in private homes or in birthing centers.


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While the movement is tiny—outside-of-hospital births accounted for only 1 percent of all births in 1989—the few studies that have been conducted indicate that this method of delivery is at least as safe as hospital birth for normal deliveries.45 We see these trends as positive, particularly if an approach to birth can be developed that meets both the medical and personal needs of the women giving birth. Costs are likely to be lower and power distributed more justly in such arrangements. B. Interest in Outcomes Not Services A feminist account of resource allocation will produce a health care system whose emphasis is on outcomes. The current division of medicine into services—geriatrics, urology, radiology, nursing—focuses on treatment whose providers have staked out fairly well-defined territory. As feminists tend to look darkly upon compartmentalization and the hierarchy such divisions imply, and have less invested than men in maintaining current territorial boundaries, they are more likely to eschew them in favor of practical results. If, for example, there were a demonstrated correlation between dropping out of school and ill health, a feminist system of health care would expend money and effort on keeping adolescents in school. To take another example: in the village of Croton-on-Hudson, New York, where teenagers have few places to congregate socially and even fewer places of amusement, the custom for high school students is to attend private parties, which are made more attractive by the presence of beer and wine. The alcohol is intended for the eighteen-year-olds, but the parties are attended by children as young as fourteen, who also drink. The long-term effects of heavy weekend drinking from the age of fourteen can be imagined; in the short term, those who drive home run the risk of inflicting as well as sustaining injury or death on the highway. This situation is not conducive to good health. It may well be that in Croton, feminist health care dollars would be expended on a movie theater and a good pizza parlor. A county department of health and human services could provide the flexibility necessary for this sort of apportionment, as its mandate would ideally go beyond disbursement for narrowly defined medical treatments. Feminist health dollars might also be spent on other outcomes. In Westchester County, New York, housing is prohibitively expensive. Poor families in the county, when they fall behind on their rent, are evicted. They are then moved to welfare motels, which often erode the integrity of the family. Sometimes marriages break up under these conditions; sometimes older children run away from their parents; young children are no longer fed properly; often family members begin dealing drugs. The stress produces heavy drinking, clinical depression,

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and chronic illness.46 Feminist resource allocation, because it is open to crossing disciplinary lines, might apportion funds for rent subsidies as a means of preventing the medical problems of homelessness. The point here is not to medicalize homelessness, but rather to focus on health outcomes that are not attainable through treatments offered by medical subspecialties. To gain them, one must set health care delivery into the broader social context and address the interconnections.

Allocation of Resources to Health among Other Goods How much of the GDP ought to go to health care, and how much to education, housing, transportation, or subsidy of the arts? Deliberations among feminists on this macroallocation point will likely sound two recurring themes. First, in keeping with the theoretical and practical priority that feminists assign to outcomes, our approach will be sensitive to the impact of poverty and oppression on health. We thus will be inclined to look favorably upon shifting resources from health care, narrowly understood, to programs that fight poverty, enhance education, and generally empower both individuals and groups. Second, feminists are also likely to pull in common concerning the process for making the budgetary decisions. There is widespread agreement that a grass-roots approach, including as many people as possible in a democratic, educational process of open and ongoing discussion, is the best way to settle questions of this kind. The town meetings held by Oregon as the state prepared to ration Medicaid resources, and the interdisciplinary and consensus-seeking committee charged with the actual ranking of services are parts of a process that feminists might approve. Whatever one might think of Oregon's determination to ration health care only for the poor, and whatever one might think of how well the process actually worked, the attempt to include as many people as possible in a consensual model of decision making receives broad feminist approval. The Oregon experience, as well as the experiences of the various "Health Decisions" programs across the country, are early efforts in the attempt to democratize decision making concerning health care allocation. The feminist contribution to the maturation of this ongoing effort would surely include urging that the voices of disempowered groups and individuals be listened to carefully. Attention to these voices would help to keep this kind of participatory democracy from stumbling into the dangers Amy Gutmann and others have cautioned against: grass-roots decision-making movements, they fear, may exclude the concerns of minorities and the least well off, and thus lead to unjust and oppressive results.47 Allocation of resources is arguably the question of greatest concern to bioethicists in the 1990s. As the effects of the present, chaotic non-


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system become more painful to a larger segment of the population, the need to restructure will press ever more insistently. Women have a special stake in the outcome of such restructuring, as their health needs have often been overlooked, and some proposals for restructuring perpetuate existing patterns of gendered oppression. Thus a good deal of feminist attention ought to focus on this debate. There is an excellent chance of getting a hearing and of providing some effective defense of the interests of women and of marginalized people more generally. But there is an even more significant possibility for feminists at hand in the reform of health care. The pressure to restructure may be so great that the standard "depoliticized" public policy strategy of incremental reform, which tends to insulate fundamental assumptions from critical discussion, will simply not be adequate. The ordinary politics of tradeoffs and compromises that characterizes interest-group liberalism, yielding to the pressure to restructure, could then give way to morally richer considerations that do not normally play a role in social deliberation. Under such circumstances, feminism has an opportunity to do more than defend the threatened interests of women. It may help transform our very notions of what health care is—and for that matter, of what justice is, as well.

Notes 1. As of this writing, we seem to be proceeding right on target: the Health Care Finance Administration estimates 1993 health care spending at $820 billion. These figures were obtained from the Health Care Financing Administration, Office of Actuary, Office of National Cost Estimates, January 22, 1993. 2. See Emily Friedman, "The Uninsured: From Dilemma to Crisis," Journal of the American Medical Association 265 (1991): 2491-95. 3. See Daniel Callahan, Setting Limits: Medical Goals in an Aging Society (New York, NY: Simon and Schuster, 1988), and What Kind of Life? The Limits of Medical Progress (New York, NY: Simon and Schuster, 1990). 4. Norman Daniels, Just Health Care (Cambridge, England: Cambridge University Press, 1985), and Am I My Parent's Keeper? An Essay on Justice Between the Young and the Old (New York, NY: Oxford University Press, 1988). 5. Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Cambridge, MA: Harvard University Press, 1982) is, of course, the locus classicus. For authors elaborating this into an ethics of care see, among others, Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley, CA: University of California Press, 1984), and Sara Ruddick, Maternal Thinking: Toward a Politics of Peace (Boston, MA: Beacon Press, 1989). For an analysis and critique, see Hilde Lindemann Nelson, "Against Caring," Journal of Clinical Ethics 3 (1992): 8-15. 6. Susan Moller Okin, Justice, Gender, and the Family (New York, NY: Basic Books, 1989). 7. Lawrence Blum, "Iris Murdoch and the Domain of the Moral," Philosophi-

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cal Studies 50 (1986): 343-67. See also his "Gilligan and Kohlberg: Implications for Moral Theory," Ethics 98 (1988): 472-91. 8. See the essays in Martha C. Nussbaum, Love's Knowledge: Essays on Philosophy and Literature (New York, NY: Oxford University Press, 1990), especially "Perception and Revolution: The Princess Casamassima and the Political Imagination." 9. According to a report by the Older Women's League, in the age bracket between forty-five and sixty-four, prior to Medicare eligibility, only 55 percent of working women have health insurance provided by their own employer. The comparable figure for men is 72 percent. See Nancy S. Jecker, "Can an Employer-Based Health Insurance System Be Just?" Journal of Health Politics, Policy and Law 18 (1993): 657-73. 10. Marilyn Frye's famous discussion of loving versus arrogant perception is also on point here. The loving eye attends to distinctions and respects them, as contrasted to the arrogant eye's tendency to construe everything in terms of its own wants and needs. There are rich implications here for questions of distributive justice. See her "In and Out of Harm's Way: Arrogance and Love," in The Politics of Reality: Essays in Feminist Theory (Freedom, CA: The Crossing Press, 1983), 52-83. 11. Despite his continued self-criticism, John Rawls's A Theory of Justice (Cambridge, MA: Harvard University Press, 1971) is still open to this charge, as is, for example, David Gauthier's Morals By Agreement (Oxford, England: Clarendon Press, 1986). 12. Michael Sandel's Liberalism and the Limits of Justice (Cambridge, England: Cambridge University Press, 1982) is the paradigm here. 13. Daniels's work is strongly influenced by Rawls. Other writers with similar inspiration include Robert P. Rhodes, Health Care Politics, Policy and Distributive Justice: The Ironic Triumph (Albany, NY: State University of New York Press, 1992), and Leonard Fleck, "Justice, HMOs and the Invisible Rationing of Health Care Resources," Bioethics 4 (1990): 97-120, and "How Just Must We Be?" in James M. Humber and Robert F. Almeder, eds., Biomedical Ethics Reviews 1990 (Clifton, NJ: Humana Press, 1991), 131-88. Callahan's work is communitarian, as is Larry R. Churchill's Rationing Health Care in America: Perceptions and Principles of Justice (Notre Dame, IN: Notre Dame University Press, 1987). 14. See Marilyn Friedman, "Feminism and Modern Friendship: Dislocating the Community," Ethics 99 (1989): 275-90. 15. See Seyla Benhabib, Critique, Norm and Utopia (New York, NY: Columbia University Press, 1986). 16. See Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990). 17. See Susan M. Wolf, "Ethics Committees and Due Process: Nesting Rights in a Community of Caring," Maryland Law Review 50 (1991): 798-858. 18. See Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990). 19. Elizabeth V. Spelman, Inessential Woman: Problems of Exclusion in Feminist Thought (Boston, MA: Beacon Press, 1988). 20. Annette Baier, "What Do Women Want in a Moral Theory?" Nous 19 (1985): 53-63, 54-55. 21. See Steffie Woolhandler and David U. Himmelstein, "The Deteriorating Efficiency of the U.S. Health Care System," New England Journal of Medicine 324 (1991): 1253-58.


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22. See Okin's discussion of vulnerability within marriage in Justice, Gender and the Family, 146-59. 23. Michael J. McFarlane, Alvan R. Feinstein, and Carolyn K. Wells, "The 'Epidemiologic Necropsy': Unexpected Detections, Demographic Selections, and the Changing Rate of Lung Cancer," Journal of the American Medical Association 258 (1987): 331-38. 24. Jonathan N. Tobin et al., "Sex Bias in Considering Coronary Bypass Surgery," Annals of Internal Medicine 107 (1987): 19-25; Richard M. Steingart et al., "Sex Differences in the Management of Coronary Artery Disease," New England Journal of Medicine (1991): 226-30. 25. Paul Cotton, "Is There Still Too Much Extrapolation from Data on Middle-Aged White Men?" and "Examples Abound of Gaps in Medical Knowledge Because of Groups Excluded from Scientific Study," both in Journal of the American Medical Association 263 (1990): 1049-52. 26. United States General Accounting Office testimony, "National Institutes of Health: Problems in Implementing Policy on Women in Study Populations" July 24, 1990), 3. 27. "An Aspirin Every Other Day Is Found to Reduce Migraines," New York Times, October 3, 1990, p. A26. 28. Courtney S. Campbell, "My Fair Lady," Hastings Center Report 20 (Sept./ Oct. 1990): 3. 29. See Rebecca Dresser, "Wanted: Single, White Male for Medical Research," Hastings Center Report 22 (Jan./Feb. 1992): 24-29; chapter 8 in this volume. 30. See Okin, Justice, Gender, and the Family, ch. 7. 31. Council on Ethical and Judicial Affairs of the American Medical Association, "Gender Disparities in Clinical Decision Making," Journal of the American Medical Association 266 (1991): 559-62. 32. Callahan, Setting Limits. The 7.8 year difference in longevity is found on p. 152. 33. American Association of Retired Persons and the Administration on Aging, "A Profile of Older Americans: 1992," pamphlet. 34. See Nancy S. Jecker, "Age-Based Rationing and Women," Journal of the American Medical Association 266 (1991): 3012-15. 35. Daniel Callahan, personal communication, March 1990. 36. Friedman, "The Uninsured." 37. J. R. Tallon and R. Block, "Changing Patterns of Health Insurance Coverage: Special Concerns for Women," Women and Health 12 (1987): 119-37. 38. Paul Cotton, "Preexisting Conditions Hold Americans Hostage to Employers and Insurance," Journal of the American Medical Association 265 (1991): 2451-53. See also Alvin L. Schorr, "Job Turnover: A Problem with EmployerBased Health Care," New England Journal of Medicine 323 (1991): 543-45. 39. Lois M. Verbrugge and Richard P. Steiner, "Physician Treatment of Men and Women Patients: Sex Bias or Appropriate Care?" Medical Care 19 (1981): 609-32. 40. Council on Ethical and Judicial Affairs, "Gender Disparities," 561. See also Ruth Ann Mack, "Second Among Equals," New Physician, JanuaryFebruary 1992, pp. 20-25. 41. The considerations in this paragraph derive from our reading of Jecker's insightful paper, "Tying Health Insurance to Jobs." 42. Boston Women's Health Book Collective, The New Our Bodies, Ourselves: A Book by and for Women (New York, NY: Simon & Schuster, 1984).

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43. See Richard Wertz and Dorothy C. Wertz, Lying-in: A History of Childbirth in America (New Haven, CT: Yale University Press, 1989). 44. Constance J. Adams, "Nurse-Midwifery Practice in the United States, 1982 and 1987," American Journal of Public Health 79 (1989): 1038-39. 45. Wertz and Wertz, Lying-in, 282-90. 46. Sally Ziegler, Executive Director, Westchester Child Care Council, personal communication, January 1992. 47. See Amy Gutmann, Liberal Equality (Cambridge, England: Cambridge University Press, 1980).

Index

Abortion African American women and, 131-132 Catholic attitudes toward, 102 for fetal disability, 322, 335-340 genetic screening and, 322 issues, feminist bioethics and, 57 performed by qualified nonprofessionals, 151 poor women and, 130—132 prenatal tests and, 322 prevention of homosexuality and, 336 principlism and, 68 for sex selection, 336 truth-telling and, 29, 118, 129-132 Absolutism, in feminist ethics, 83-84 Academic disciplines, maintenance of sexism and, 48—49 Accountability, for physician speech acts, 192-193 Active euthanasia. See Euthanasia and physician-assisted suicide ACT-UP, 255-256 Adkins, Janet, 287, 299 Adult and Adolescent Spectrum of Disease Project, 258-259 Affirmative action, female biomedical research participants and, 234-236 African Americans. See also Black Women's Health Project; Poor Women of Color; Race; Racism; Slave women; Women of color abortion and, 131-132 access to health care and, 123, 356, 358-359 AIDS and, 23 bioethics and, 6, 17, 23, 117, 356 euthanasia and physician-assisted suicide and, 290, 297 feminism and, 354, 356 physician-patient relationship and, 122— 126, 134-137, 194-195, 203 confidentiality and, 126-129 informed consent and, 132-134 truth-telling and, 129-132 poor. See Poor women of color sickle-cell screening and, 17, 124 Tuskegee Syphilis Study, 6, 17, 217, 297 Aging. See also Elderly body image and, 174 physicians as experts on, 148 AIDS. See also HIV-infected women

in men, euthanasia and physicianassisted suicide and, 284 research, 262-264 insufficiency on women, 12, 31 pregnancy and, 262-264 in women, 262-264. See also HIVinfected women changes in, 264 of childbearing age, 261 clinical trials, 260-264, 274-275 health impact of, 266-270 impact on, 266-270 incidence of, 23, 257t, 260 injustice and, 270-275 literature on, 264-266 NIH and CDC research portfolios, 254-256 oppression and, 274-275 protests over, 255-256 vertical transmission and, 262-264 AIDS Clinical Trials Groups (ACTG) minority participants in, 260-262, 264 women participants in, 260-262, 264 Women's Health Committee (WHC) and, 264, 275 Alcohol consumption, 147, 169 Alzheimer's disease, euthanasia and physician-assisted suicide and, 287 AMA. See American Medical Association (AMA) American Association of Medical Colleges (AAMC), 148, 154 American Medical Association (AMA), Council on Ethical and Judicial Affairs, 127, 221 Amniocentesis decisions, race/class differences in, 125-126 "Anatomy as destiny" concept feminist critiques of, 326-327 in genetics, 321, 323 Annas, George, 231 Anorexia nervosa, weight control and, 173 Aquinas, Thomas, 99 Arrogance, in health care system and bioethics, 95, 98, 111 Artificial insemination, of lesbian women, 102 Asch, Adrienne, 32, 318-350 Aspirin research, exclusion of women from, 220-221, 359

372 August, Alison, 308 Austin, J. L., 189 Autonomous self-concept, 74-75 Autonomy children and, 53 classism and, 88, 132-134 communicative action model of medical discourse and, 193 Dimas case and, 78-79 in euthanasia and physician-assisted suicide, 31-32, 298-301, 308 as exclusionary, 53 in feminist ethics, 52-53, 58, 74-75, 82 forced medical treatment of pregnant women and, 132-134 genetic testing and, 324-325, 342 liberal individualism and, 16-17 as moral analysis principle, 27-28, 50, 68, 103 of pregnant women, exclusion from biomedical research and, 230-232 presymptomatic testing for breast cancer and, 333 racism and, 88, 132-134 separate self-concept and, 74-75 sexism and, 88 substitutes for, 82 Azidothymidine (AZT), 262-264 Baby Fae case, 14 Baby Jane Doe case, 14 Baier, Annette, 52-53, 356 Bartkowski, Hermina, 78, 81 Bartky, Sandra, 171 Battered women. See Domestic violence Beauchamp, Tom, 15-16, 24, 27, 68, 69, 82 Beauty, stereotypes of, 30, 150, 151, 171176. See also Stereotypes, female Belkin, Lisa, 76-77 Belloc, Nella, 168-169, 174 Belmont Report, 270-271 Beneficence, physician. See Physician(s), beneficence Benhabib, Seyla, 32, 186, 197, 202, 204 Bias, gender. See also Gender, oppression; Sexism as ethical problem, 29-30 in ethical theories, 54 ethics of care and, 72, 105 in observational sciences, 9-10 in traditional philosophical approaches, 9-10 Bigwood, Carol, 174-175 Binary thought, 84-85 Bioethicists clients of, 18-20 ethical problems of racism, classism, and sexism, and, 96 health professions and, 55—56

Index inclusion of women in biomedical research and, 236 nearsightedness of, 96 nonfeminist, 54-55 political positions of, 155-156 Bioethics African American perspectives on, 6, 117 caregivers and, 11 class and, 117-118, 120, 123-137, 252 feminism and. See Feminism, and bioethics feminist epistemology of. See Epistemology of bioethics, feminist field, 21 allocation of health care and, 56 arrogance and, 98 attitudes of, 22, 61 background of, 10, 13-14 bioethicists in. See Bioethicists case-based analysis and, 104. See also Casuistry changes in, 71 clients, critical capacity and, 19 clients, identification of, 18-20 composition of, 59-62 confidentiality in, 29, 57, 118, 127129 defined, 8-10 demographics, 5, 6, 14, 59-62 development, legal cases and, 14 epistemology, 24-26 ethics of care and. See Ethics of care experts, 25 feminist standpoint theory and, 9697 justice conception in, 54 principles, dominance of, 14-16. See also Principlism vs. feminist ethics, 120 focus on physicians, 11 gender and. See Gender, bioethics and heterogeneity, need for, 61-62 insurance status and, 21 interdisciplinary nature of, 7-8 intuition and, 175-176 isolation from feminism, 10-14 liberal individualism and, 16-18 literature expansion of, 7-8 on HIV-positive women, 252 nearsightedness in, 95, 96, 111 "neutral," 21 patient construction in, 117-118 patient reconstruction in, 118-120 physicians' concerns and, 61 poor women of color and, 29, 116—137 principlism in. See Principlism private sphere of medicine and, 120— 122 public sphere of medicine and, 120-122

Index race and, 6, 14, 17-18, 20-21, 28, 29, 54-55, 57, 59-61, 116-137, 282 reconstruction, need for, 6-7 research and treatment differentiation and, 12 sexism of disciplines in, 49 sexual orientation and, 24 social prejudices and, 119 social privilege and, 18 subdivisions of, 7—8 subjects of, 22-24 theoretical ethicists, debates of, 50 theory generalized and concrete other in, 202-204 morality issues in euthanasia and physician-assisted suicide and, 303-305 traditional issues, feminist perspective and, 56-59 transition from Hippocratic ethic to principlism, 67-68. See also Principlism from principlism, 67-71. See also Principlism

unselfconciousness and, 96-98 women of color and, 5, 23, 25, 29, 116137 women's health movement and. See Women's health movement, bioethics and Biological determinism, genetic testing and, 325-327 Biological reductionism, Human Genome Project and, 24 Biomedical research on AIDS in women, 262-264 equitable subject selection in, 225 exclusion of women from, 12, 31, 216— 236 criteria for, 217 fear of litigation and, 226-229 homogeneity of subjects and, 224225 liability for harm to unconceived/ unborn offspring and, 226-229 moral duty to protect fetus and, 229237 new drugs/interventions, lack of access to, 218 new ethic, creation of for researchers and, 236 perception of women and, 222-223 postmarketing "experimentation" on women, 219-220 pregnancy and, 221-222 proposal for full participation and, 234-236 quality care, access to, and, 219 race and, 55, 224, 260-261, 270, 274 rationale for, 223-234

373

reforms in, 234-236 regulatory restrictions and, 225-226 second-class health care and, 220-221 women's health problems and, 23, 359-360 genetics, focus on, 318 men as normal generic, 217, 359 white elite, impact of, 55-56 principlism and, 68. See also Principlism subjects' rights. See also Informed consent; Legal issues; Patient(s), rights; Rights Belmont Report, 270-271 bioethicists and, 6 bioethics and, 12-13, 18, 21, 25 consent and, 12 feminist analysis of, 24 gender and, 12, 31 IRBs and, 19, 217, 225, 236. See also Institutional Review Boards (IRBs) rules protecting, 12. See also Legal issues, in biomedical research, regulations on selection of subjects, 12, 31, 216-251, 260-264, 271-275, 359-360 vulnerability of subjects in, 59 Birth of the Clinic (Foucault), 20 Black Women's Health Project, 20 Blum, Lawrence, 303, 353 Body, female attitudes toward, 55 deviation from male-defined norms, 48 genital mutilation of, 23, 83-84 ideal type, health linked to, 145 image of aging and, 174 health care and, 150 health status and, 171-176 "natural objects" view and, 174-175 mediation of women's experiences through, 88 Body weight. See Weight Boorse, Christopher, 164-165 Boston Women's Health Book Collective publications, 29, 145, 146, 148, 149, 151, 154, 364 Bouvia, Elizabeth, 14 Breast cancer genetic testing, presymptomatic, 32, 325, 332-335 medical inattention to, 13 multifactorial causes of, 321 patients, communicative ethics and, 199-201 examinations, neglected by physicians, 148 implants, 13, 22 stereotypes of beauty and, 172

374

Breast-feeding connectedness of women and, 75 exclusion from AIDS clinical trials and, 264 medicalization of, 55 Brennan, Troyen, 120-121 Breslow, Lester, 168-169, 174 Brody, Howard, 302 Bypass surgery, race and, 123 Byrne, P. S., 187-188 Callahan, Daniel, 32, 164-165, 352, 361362 Canada, health care resource allocation in, 56 Cancer breast. See Breast, cancer cervical, treatment of, 123 Cardiac disease. See Heart disease Care/caring. See also Caregivers; Health care autonomy and, 82 chronic needs, U.S. health care system and, 147 communities, created under oppressed conditions, 76 ethics of. See Ethics of care euthanasia and physician-assisted suicide debate and, 32, 285-286, 304-307 home. See Home care human values of, 72 justice and, 105-106 maternal thinking, 107 natural, exploitation of women and, 105 natural and ethical comparison, 105 principled caring, 32, 286, 304-307 respite, 152 treatment in health setting, 104, 107 women, impact on, 72, 80-81 Caregivers gender of, 11, 80-81, 105, 149, 153 variety of, 11 Care-oriented ethics. See Ethics of care Caretaker role, of women, 338, 357 Cartwright, Samuel A., 166 Cassell, Eric J., 119 Casuistry bioethics and, application of case-based analysis, 15, 20, 27, 104 feminist challenge to, 27 principlism and, 15, 20, 27, 69, 104, 154, 304. See also Principlism Catholics, abortion attitudes of, 102 Center for Women's Policy Studies, 235 Centers for Disease Control (CDC) AIDS cases reported in 1981-92, 257t AIDS research portfolio on women and, 254-260 definition of AIDS, 266-269, 273

Index impact of AIDS on women and women's health and, 266-269, 273 Cervical cancer, treatment, 123 Cesarean section forced, 22, 133-134 poor women of color and, 133-134 unnecessary, 22 Child abuse/neglect, prosecution of pregnant women for, 231 Childbirth certified nurse-midwives and, 364-365 by cesarean section, 22, 133-134 childrearing choices, gender and, 4 demedicalization of, 151, 364-365 democratization of, 151, 364-365 Lamaze method, 364 Child care physicians as experts on, 148 privileged white males and, 54 Children autonomy and, 53 with disabilities. See Disability social priorities and, 233-234 vertical HIV transmission and, 254-255, 264 welfare of, 233-234 Childress, James, 15-16, 24, 27, 68, 69, 82 Choice autonomy and, 82 euthanasia and physician-assisted suicide, domestic violence analogy and, 292-293 genetic testing and, 324-325, 333-334 poor patients and, 79 in reproductive decision making, 76 Chromosomal disorders, 320 Cixous, Helene, 84-85 Class. See Social class Classism. See also Social class; Socioeconomic status bioethics and, 88, 96. See also Principlism feminist standpoint theory and, 95 Clients, of bioethicists, 18-20 Clinical ethics, 7-8, 104. See also Physician-patient relationship Clinical trials. See Biomedical research Clinton, Bill, 130 Clouser, K. Danner, 68-69 Coercion, freedom from, 17 Coffey, Mary, 78, 81 Communication by genetic counselors, 340-341 between physicians and patients. See under Physician-patient relationship Communicative action model in physician-patient relationship, 190193 vs. strategic action model, 185

Index Communicative ethics dialogical model vs. monological model, 186 distinction between consensus and mutual understanding, 186 "interactive universalism" and, 186 linguistic gender differences, 194 in physician-patient relationship, 30, 147, 184-207 action model and, 185, 190-193 action model vs. strategic action, 185 concrete, 202-203 ethical principles and, 204-206 gender, impact on power dynamics of, 193-198 generalized, 202-203 gynecology and, 144, 145, 147 information-transfer model and, 187191 medical encounters as interviews and, 189-190 medical interview vs. conversation, 195-196 models of, 198-201 nonrational factors and, 197 patterns of, 189 power relations, 124—125 race, impact on power dynamics of, 193-198 social class, impact on power dynamics of, 193-198 study strategies of, 185 Communitarians "expressive-collaborative" theory, 86 principlism and, criticisms of, 69-70. See also Principlism Community clinics, race and patient care in, 123 Community orientation democracy, in production of knowledge, 25 diversity, in production of knowledge, 25 ethics in, autonomy-based theories of, 53 feminist commitment to, genetic testing and, 327-330, 342 fetal disability and, prenatal diagnosis of, 338 homosexuality and, prenatal diagnosis of, 336 human values and, 72 justice and, approaches to, 355 liberal individualism and, 16-17, 58 moral, construction of, 86 moral analysis, impact on, 28 physical perfection and, cultural ideals of, 339 presymptomatic genetic testing, availability of, 325

375 Community Programs for Clinical Research on AIDS (CPCRA), 260262, 264 Women, Children and People of Color (WCPC) Subcommittee, 264 Community values, female, 72 Compassion, female values of, 72 Concrete narrative details, in moral decision making, 51-52 "Concrete other" concept, 203-206 Confidentiality of drug use during pregnancy, 29, 118, 127-129 power relations in society and, 57 Congress AIDS research hearings, 256 Health Omnibus Programs Extension Act of 1988 (HOPE), 270 Human Genome Project funding, 323 Medicaid. See Medicaid Pregnancy Discrimination Act, 228 Public Health Service Act, Title X, 130132 Ryan White Care Act, 269-270 Conley, Frances, 153 Connectedness, female cultural feminist ideology and, 75-76 female bodies, mediation of experience through, 88 feminist ethics and, 75-76 genetic knowledge and, 330-331 liberal feminist ideology and, 75-76 positive vs. negative aspects of, 75-76 radical feminist ideology and, 75-76 reproductive decision making and, 76 Conroy, Claire, 14 Consent requirements. See Informed consent; Biomedical research, subjects' rights; Patient(s), rights Context. See also Political context of body image, 174-175 clinical ethics, casuistry in, 104 euthanasia and physician-assisted suicide debate and, 285-288, 291292, 296-297, 303-305 feminist medical ethics in, 119 traditional ethics critique, 104 feminist standpoint theory and, 103104 of health care in decision making, 155 medical communication, ethical principles in, 204-206 in moral reasoning, 15 Conversationalists criticisms of principlism, 70. See also Principlism "expressive-collaborative" theory and, 86

376 Conversational model of physician-patient relationship, 130 Cosmetic surgery body image and, 174 disvaluing of women and, 174 feminist bioethics and, 59, 150 Critical Legal Studies, and euthanasia and physician-assisted suicide, 298 Critical Race Theory bioethics and, 14, 20-21 euthanasia and physician-assisted suicide and, 298 Cruzan, Nancy Beth, 14 Cultural beliefs communitarian, criticisms of principlism and, 69-70 cosmetic surgery and, 59 differences among women, 101—102 euthanasia and physician-assisted suicide of women and, 284, 289— 290 experiential knowledge and, 57-58 female genital mutilation, community standards and, 83-84 on menopause, 150, 151 on physical perfection, prenatal genetic testing and, 339 of poor women of color, medical decision making and, 133-134 role in health care, 352 scientific knowledge attitudes and, 5758 sexism, 48 women's health care and, 150 Cultural feminists, 72, 73-77 approach of, 72, 75 bioethics, approaches, to, 72, 73-77 Dimas case and, 81-82 reproductive decision making, 76 separate self-concept, 75 Daniels, Norman, 32, 330, 352 Death. See also Euthanasia and physicianassisted suicide culture and, 289-290 decision making, in Netherlands, 294295 dying patients gender of, 3-4 treatment of, 3-4 modes of, 289-290 "Debbie" case, 14, 287-288, 298 de Beauvoir, Simone, 102 DeBruin, Debra, 273-274 Decision making, 73-77 end-of-life, in Netherlands, 294-295 ethical impartiality and, 99 universalizability and, 99 informed, genetic testing and, 324-325

Index medical. See Medical decision making moral. See Moral decision making Deductivism, principlism and, 68. See also Principlism Democracy feminist epistemologies and, 25 health care system and, 364-365 Department of Health and Human Services (HHS), 229 Depression euthanasia and physician-assisted suicide and, 283, 290 gender and, 12, 283, 290 postpartum, 144 DES. See Diethylstilbestrol Dialect speakers medical discourse and, power dynamics in, 194-195 patient care and, 123 Dialogical model, in communicative ethics, 186 "Diane" case, 14, 288 Dietetics, health definitions and, 167 Diethylstilbestrol (DES), 13, 22 Dieting, health and, 150 Difference age, 354 biomedical research and, 217, 222, 235 class, 95, 101-102, 110, 122-123, 125126, 196, 205 cultural, 101-102, 134 "dilemma of difference," 355 disability and, 110, 336-337, 339 ethics of care and, 107 ethnicity and, 354 feminist analysis of, 32, 75-76, 85, 95, 101-103, 122, 319, 328-329, 336337, 354-356 feminist bioethics and, 23, 110-111, 358-362 gender, 75, 87, 95, 110, 193-194, 196, 197, 203, 205, 216-217, 222-223, 283-284, 296, 354, 357-362 genetic, 32, 319, 322, 324, 326, 328, 341_342 health care and, 123, 125-126, 134, 193198, 203, 296, 358-362 among individuals, 6, 103, 107, 356 proportionate representation and, 110111 racial, 95, 101-102, 110, 122-123, 125126, 196, 205, 354 religion and, 102, 134 sexual orientation and, 102, 110 among women, 83, 86, 101-103, 122, 358-359 Differences. See Human variability Different Voice, A (Gilligan), 285 Dimas, Armando. See Dimas case Dimas case, 77-82

Index cultural feminist analysis of, 81—82 liberal feminist analysis of, 78-79 pornography and, 88 radical feminist analysis of, 79-80 Disability/disabilities family choices and, 4 feminist bioethics subject, 23-24 feminist critique of prenatal genetic testing and, 355-340 health care system and, 157 medical professionals' attitudes toward, 165 parenting and, 341-342 social construction of, 319 Disadvantaged persons, autonomy-based ethical theories and, 53 Discourse ethics. See Communicative ethics Discourse pattern transformation "concrete other" concept and, 202—204 "generalized other" concept and, 202— 204 in physician-patient relationship, 196 Disease(s). See also specific diseases abortion, for fetal disability, 337-338 chromosomal disorders, 320 dominant gene and, 320 frequency among women, genetic testing and, 12 Human Genome Project, 323, 329-330 multifactorial, 321 prevention, through medical education, 148 recessive gene and, 320 screening tests, development of, 322 Distributive model of justice, 54, 355 Diversity feminist epistemology of bioethics and, 25 genetic testing and, 326, 328 health care allocation, justice in, 356 Division of AIDS Treatment Research Initiative (DATRI), 260-262 DNA. See Genetics; Human Genome Project Doctor-patient relationship. See Physicianpatient relationship Doctor's Group, The, 145 Doctrine of embodied objectivity, 99 Domestic injustice, 54 Domestic violence euthanasia and physician-assisted suicide analogy, 292-293 gender-neutral language and, 109 medical inattention to, 13 physicians' duties, 23 sexism and, 47 Dominant gene characteristics, 320 Dominant groups in feminist ethical analysis, 52

377 privileged perspectives and, 100 race and, 123 sex and, 123 social class and, 123 thinking methods, criticism of, 100-101 Down syndrome, 320, 322 Dresser, Rebecca, 29-30, 144-159 Drug testing Food and Drug Administration guidelines, 235 gender and, 12, 219-220 of women fear of harm to unborn offspring and, 226-229 fear of harm to unconceived offspring and, 226-229 postmarketing "experimentation" on, 219-220 pregnant, safety studies for, 222 Drug use/abuse confidentiality, 29, 127-129 fear of, 302 Johnson case, 127-128 pain relief and, 302 physicians' attitudes toward, 147 during pregnancy, 23, 29, 118, 126-129, 231 race and, 118, 127-129 women diagnosed with AIDS, exclusion from clinical trials, 261, 274 Dubler, Nancy, 232-233 Duchenne's muscular dystrophy, 320 Dworkin, Andrea, 87-88 Eating disorders beauty stereotypes and, 30 femininity stereotypes and, 30 gender-neutral language and, 109 weight control and, 172-173 women and, 150 Eating habits, health correlation of, 169 Economic status. See Socioeconomic status Economists, in bioethics, 7 Ehrenreich, Nancy, 134 Elderly euthanasia and physician-assisted suicide decision devaluation in, 296 gender in, 296 poverty in, 291 gender discrimination in bioethical research, 13 health care system changes, women's health movement and, 151 health insurance, gender and, 353 longevity, gender differences in, 361 medical treatments, feminist bioethics and, 58-59 negative cultural stereotypes of, 151 Elders, Jocelyn, 235

378 ELSI program, 19 Empathy feminist analytic methods and, 27 in physician-patient relationship, 201, 204, 205 prenatal genetic testing and, 339-340 Engelhardt, H. Tristram, Jr., 165 Environmental factors, critiques of Human Genome Project and, 326327 Epistemology of bioethics, feminist, 25—28 diverse community concept, 25 goals of, 25 public standard for agreement, lack of, 25-26 standpoint theory and, 26 Equality female, PS. special treatment, 9 health care reform and, 352 in medical communication, principles of, 30, 204-206 sex of embryos, selection of, 336 Essentialism, 17, 85, 86-87, 101-102, 122123 Ethics of care. See also Feminist ethics bioethics and, 15-16 anti-principlism in, 67-71 based on abstract rules or principles, 15, 50-51. See also Principlism criticisms of feminist approaches to, 82 care-based reasoning and, pitfalls of, 104-107 defined, 104-105 euthanasia and physician-assisted suicide and, 303-305 expressive-collaborative mode, 85—86 feminist vs. feminine approaches to, 71-72 feminist standpoint theory and, 95-96 friendship model, 106 gender inequity, 72 personal and societal conditions, link between, 106 as power, 85 as science, feminist rejection of, 85 theoretical-juridical mode, 85-86 traditional ethics, autonomous selfconcept and, 74-75 vs. ethics of justice, 50—51 vs. feminist ethics, 8-9 Ethics of justice. See also Dimas case traditional ethics and, 50-51 vs. ethics of care, 50-51, 72 Ethnography, feminist challenge to, 27 Eugenics, 321-322 Euthanasia and physician-assisted suicide, 25, 282-317 alternatives to, 288 beneficence, physicians' duties of, 301303

Index bioethical theory and, 302-305 California referendum on legalization of, 290, 292 case report of "Debbie," 287, 288 of "Diane," 288 Critical Legal Studies and, 298 debate over, 284-286, 296-297 domestic violence analogy and, 284285, 292-293 gender and. See Gender, euthanasia and physician-assisted suicide and moral development debate and, 285-286 morality of care, 303-305 impartial, 303-305 pain relief and, 283, 287-288, 290, 298, 299, 302, 305-306 patients' rights and, 298-301 person, embeddedness of, 299 polls on, 290 principlism and, 68 protection of vulnerable, guidelines for, 306-307 racism and, 297 suicidal behavior, gender differences in, 283, 284, 291 of women, predominance in early cases, 287-288 Exercise health correlations of, 169 socialized self-image of women and, 173 well-being and, 175 Experiences, personal extended feminist standpoint theory and, 103-104 feminist analytic methods and, 27 gender differences in, 87 health care resources allocation, justice in, 356-357 of illness, 147 mediation through female body, 88 moral decision making and, 70 physician-patient relationship and, 103104, 206 self-rule and, 17 of treatment, 147 of women, understanding of care in, 104-105 of women of color, 29, 116-117, 122123, 125-126, 134-137 women's health movement, representation by, 146 "Expressive-collaborative" mode of ethical theory, vs. theoretical-juridical mode, 85-86 Faden, Ruth, 31, 252-281 Familial hypercholesterolemia, genetic testing and, 322

Index Family/families breast cancer, presymptomatic testing and, 334 health care choices, gender and, 4 moral decision making, traditions in, 70 physician-patient relationship and, 22 prenatal diagnosis of fetal disability and, 338, 341-342 Fauci, Anthony, 256, 258, 259, 260 FDA. See Food and Drug Administration (FDA) Female genital mutilation, 83-84 "Feminine" ethics, vs. feminist ethics, 9, 71-72 Femininity cultural norms of, 150 health and, 30, 171-176 health care system and, 150 stereotypes of, 30, 171-176 Feminism. See also Feminist standpoint; Feminist standpoint theory academic disciplines, critiques of, 48—49 and bioethics, 47-52, 67-89. See also Feminist bioethics contributions of, 76 critiques of, 49 cultural approaches, 73-77. See also Cultural feminists current debates, 71 decision making in, 76 Dimas case, 77-82 feminist vs. feminine approaches, 7172 groups neglected by, 18 health definition and, 30 identification of client, reasons for, 18-20 isolation of, 10-21 liberal approaches, 73-77. See also Liberal feminists Marxist approaches, 72-73. See also Marxist feminists psychoanalytic approaches, 72-73 radical approaches, 73—77. See also Radical feminists separation of bioethics from, reasons for, 20-21 socialist approaches, 72-73 common themes of, 47-49 cultural. See Cultural feminists defined, 7-8, 47, 71-72 genetics and. See Genetics, feminism and health care reform and, 351-352 health view, 163-177 inattention to, 14-21 liberal. See Liberal feminists liberal individualism, critiques of, 16—17 Marxist, 72-73, 100 moral reasoning and, 50-51 ontological differences in, 75, 76 oppression and, 123, 328

379 postmodern, 102-103 psychoanalytic, 72-73 radical. See Radical feminists relativism refuted, 99 sexism and, 48 types of, 5, 71-73 Feminist(s) bioethics. See Feminist bioethics clinics, 13, 20 community-based conception of self and, 53 cultural. See Cultural feminists differences among, 72-76 ethics. See Feminist ethics liberal. See Liberal feminists literature bioethics and, 11 medicine and oppression of women, and, 54-55 moral reasoning in, 26-28 professional women and, 24 Marxist, 72-73, 100 oppositional label, 85 philosophers, 184 postmodern, 102-103 psychoanalytic, 72-73 radical. See Radical feminists relativism, vs. traditional relativism, 84 scholarship contemporary, 101-102 criticisms of, 10 ethics of care and, 8-9 in law, 9 marginalizing efforts, 10 in moral philosophy, 9 in philosophy of science, 9-10 self-consciousness of, 101-102 women, differences among, 9-10 socialist, 72-73, 102 standpoint. See also Feminist standpoint theory claims of, 100-102 defined, 95 mothering and, 100 vs. women's standpoint, 101 vs. feminine, 71-72 Feminist bioethics. See also Epistemology of bioethics, feminist abortion and, 57 contributions of, 5, 21-33, 89 cosmetic surgery and, 59 criticisms of, 20, 49, 82-89, 116 defined, 7-10, 54, 62, 73-74 development of, 7-10 disability and, 23-24 epistemology, 24-28 euthanasia and physician-assisted suicide debate and, 297-308 expressive-collaborative theory, 85-86 female genital mutilation and, 83-84 field, composition of, 59-62

380 Feminist bioethics (continued) gender and, 3-4, 87 genetics and. See Genetics, feminism and global vs. local critiques, 54-56 harassment by physicians and, 59 health care reform and, 351-367 health care resources allocation and, 32 health need priorities and, 56 Human Genome Project and, 32, 318342 inclusionary aspects of, 82-83 isolation of bioethics from feminism and, 10-21 lack of research on, 4-5 medical research on human subjects and, 59, 216-251 moral theorizing and, 85-86 oppression and, 62 patient-physician relationship and, 30 patient reconstruction and, 134-137 physician-assisted suicide and. See Euthanasia and physician-assisted suicide postmodernist criticism of, 84-85 public/private dichotomies in medicine and, 121-122 relativism in, allegations of, 82-83 sexism in, allegations of, 82-83 sexual abuse by physicians and, 59 subjects of, 22-24, 58 tasks of, 32-33 topic selection in, 56-59 traditional bioethics and, 88-89 traditional hierarchy challenges and, 20 women of color and, 5, 23, 29, 83, 101102, 116-143, 354, 356 Feminist ethics, 49—54. See also Feminist bioethics autonomy concept, 52—53 development of, 4 expressive-collaborative theory, 85-86 moral issues, political dimension of, 116 oppression, patterns of, 52 patient construction in, 117-118 traditional ethics challenged, 83 vs. ethics of care, 8-9 vs. "feminine" ethics, 9, 71-72 vs. medical ethics, 120 Feminist standpoint theory, 5, 26, 29, 8688, 95-115 bioethics and, 29 classism and, 95 context and, 103-104 differences among women and, 86—87 epistemology of bioethics and, 26 ethics of care and, 95-96 extended, 95-96, 101-103 advantages of, 95 attention to relationships and, 103-104 care-based reasoning, pitfalls of, 104— 107

Index caring work and, 106 case illustration, 107-109 context, attention to, 103-104 criticism of, 86-88 cultural differences and, 101-102 defined, 95 feminism versions and, 102 gender-neutral language and, 109 lesbians and, 102 meaning of care, 104-107 racial differences and, 101-102 remedial strategy of, 109-111 flaws in, 96-97 gender justice and, 105 gender oppression, attitudes towards, 87-88 need for health care and, 95-96 oppression, attitudes towards, 87—88 physician-patient relationship, models of, 103-104 postmodernist feminists, 102-103 proportionate representation and, 109111 social class differences and, 101-102 Feminization of poverty, 109 Fetus disability, prenatal diagnosis of, 338 harm to. See also Genetic testing, prenatal biomedical research, exclusion of women from, 229-237 biomedical research, male subjects of, 226-229, 231 HIV-infected women, reproductive freedom of, 232-234 moral duty to protect, 229-237 social interest in child welfare and, 233-234 rights and, 229-234, 263-264 Fisher, Sue, 124, 187, 189, 190, 192, 195 Flanagan, Owen, 303 Fletcher, John, 336, 338, 339 Food and Drug Administration (FDA) biomedical research and, subject selection, 226 liability and, 228 women drug testing, guidelines for clinical research on participants, 261 inclusion in biomedical research, 235— 236 life-threatening illness, guidelines for clinical research on participants, 261 Foucault, Michel, 20 Foundationalism, feminist ethics and, postmodernist critique of, 84-85 Fraser, Nancy, 186 Friedman, Marilyn, 32, 105, 106, 341, 355 Friendship, ethical care model, 106, 135 Frye, Marilyn, 85, 102

Index Gametotoxins, 226-227 "Gay gene," 336 GDP. See Gross Domestic Product Geller, Gail, 32, 318-350 Gender. See also Bias, gender abstract moral rules/principles, reasoning from, 15. See also Principlism AIDS research, injustice in, 273-275 bias. See Bias, gender; Sexism bioethical theory and, 203 bioethics and failures based on, 21 issues in, 152 lack of attention to, 4-7, 11-12 oppression and, 49 principles of, 21 reproduction issues in, 11-12 cardiac therapy access and, 23 of caregivers, 11, 80-81, 105, 149, 153 differences. See also Difference in ethics of care adoption, 50-51 in ethics of justice adoption, 50-51 gender-neutral language and, 109 in health care resource allocation, 357-363 in linguistic dynamics in medical discourse, 194-195, 198 in moral problem examination methods, 8-9 in power dynamics of medical discourse, 194-195 in sensitivity, 354 in wages, 47 essentialism, critique of race and, 122123 euthanasia and physician-assisted suicide and, 31-32, 282-317 avoidance of "being a burden" and, 291, 293 considerations in early cases, 287-289 cultural lineage and, 289-290 depression and, 290 domestic violence analogy, 292—293 early cases, 287-289 feminist analysis of, 297-308 inequities in health care system and, 290—291 Netherlands data, 286, 294-296 pain relief, 290, 295-296, 298, 305306, 307 patient requests, physicians' response to, 284, 293 patients' vulnerability and, 282-286 physician-patient relationship and, 290 poor women and, 291 status of women and, 306-307 termination of treatment and, 308 family members, home care for, 80-81 genetic counseling, role in, 32

381 genetic testing and, 340-341 groups, importance of, 17 healing enterprise, role in, 24 health care resources allocation, justice in, 32 illness and frequency of, 12 societal definitions of, 12, 30, 149, 150, 164-167 justice, 95-96 medical communication, ethical principles of, 205 medical discourse, impact of power dynamics, 193-198 medical research subject selection criteria and, 31 moral analysis, generalizations in, 27-28 oppression analysis of experience through female bodies, 88, 175-176 autonomy and, 58 binary thought and, 84-85 bioethics, traditional issues in, 56—59 caring communities and, 76 connectedness and, 75-76 distributive model of justice and, 54 elimination of, 62 feminist: bioethics, 120; cultural, approach of, 72. See also Cultural feminists: ethical analysis, 52; liberal, approach of, 72. See also Liberal feminists; Marxist, approach of, 72-73, 100; postmodern, approach of, 102-103; psychoanalytic, approach of, 72—73; radical, approach of, 72—73. See also Radical feminists; socialist, approach of, 72-73; standpoint theorists, 87-88 forms of, 47 in medical organization, 54—56 in medical practice, 54-56 oppositional thought and, 84-85 pornography and, 87-88 reduction of, 62 osteoporosis and, 12 patient harm and, 21 physician-patient relationship and, 11, 117-118, 123-126, 193-198, 203 confidentiality and, 29, 118, 126-129 informed consent and, 118, 126, 132134 truth-telling and, 29,118, 126,129-132 physicians, focus of bioethics on, 11 prenatal testing for, 336 race and class, relationship to, 82, 117118, 120, 122-136 renal therapy access and, 23 research and, 12, 21, 24 research ethics and. See Biomedical research

382 Gender (continued) roles, 149 significance, for bioethicists, 56-57 stereotyping. See also Stereotypes, female bioethics and, 49 physician-nurse relationship and, 103 physician-patient relationship and, 55 reinforcement of language and, 48 suicide and, 283, 284, 291 thought styles and, 8-9 treatment and reduced access to, 23 role in, 12 well-being and, 168 Generalized other, 202-206 Generic patient biomedical research and, 217 euthanasia and physician-assisted suicide debate and, 282 Genetic counseling, gender role in, 32, 340-341 Genetics, 24, 32, 318-350 eugenics and, 321-322 feminism and, 24, 32, 318-350 "anatomy as destiny" concept, 321 biological determinism and, 325-327 breast cancer presymptomatic testing and, 332-335 community among women and, 327330 contribution of, 341-342 feminist theory applications and, 331-341 informed decision making and, 324325 moral reasoning connection and, 330-331 physician-patient relationship and, 340-341 prenatal genetic diagnosis and, 335340 reproductive vs. presymptomatic testing, 331-332 history of, 319-324 development of genetic screening and, 322 Human Genome Project and, 322-324 inheritance patterns and, 320-321 prenatal test development and, 322 pre-World War II racism and, 321 Genetic testing biological determinism and, 325-327 breast cancer, presymptomatic, 32, 325, 332-335 familial hypercholesterolemia and, 322 feminist bioethics and, 32, 318-350 gender-neutral language and, 109 for Huntington's disease, 322, 337 ideal characteristics and, 328-329

Index labeling and, 322, 323-324 moral reasoning models, 330-331 "normal" concept in, 328 prenatal, 32 amniocentesis decision and, 125-126 capacity for empathy and, 339-340 criticisms of, 335-340 family life, ideal of, 341-342 fetal disability issue, 336-338 homosexuality prevention and, 336 labeling and, 339 medical interventions and, 322 parent-child relationship and, 333339 sex selection, 336 presymptomatic, vs. reproductive, 331332 principlism and, 68 sickle-cell disease, 17 Genital mutilation, female. See Female genital mutilation Gert, Bernard, 68-69 Gilbert, Walter, 323, 325-326 Gilligan, Carol, 8-9, 25, 27, 50-51, 104105, 107, 285-286, 289, 303, 331 Government. See also specific government agencies; Congress; Legal issues aid, 132 basic rights and protections, lack of, 132 bioethicists, clients of, 18 biomedical research exclusion of women from, 31, 225226 inclusion of women in, 236 federal regulations, HIV-infected women and, 269-270 poor women, dependency of, 132 Greek tragedy, women in, 289-290 Gross domestic product (GDP), 351 Group differences, power and, 95 membership, bioethics and, 14, 17-18 Guidelines for Study of Gender Differences (Food and Drug Administration (FDA)), 235 Gynecology lack of research in, 221 patient complaints in, 144 problems of HIV-infected women in exclusion from CDC definition of AIDS, 261, 266-269 study of AIDS literature on, 265t, 266 secrecy and, 145 shame and, 145 surgical development, experimentation on slave women and, 123—124 women's attitudes toward, 150 Habermas, Jurgen, 184-186, 188-189, 193, 196, 197, 202, 203

Index Happiness, feminist ethics and, 52 Haraway, Donna, 99, 100-101 Harding, Sandra, 103, 326-327 Harm to fetus. See Fetus, harm to to Infants. See Infant(s), harm to to patients and subjects. See Biomedical research, subjects' rights; Patient(s), rights Harrison, Beverly, 336, 337 Hartsock, Nancy, 100-101 Hastings Center, 236 Healers in colonial America, female, 11 Health, 30, 163-183 definition, debate over, 30, 163-183 economic position and, 56, 148 feminist view of, 30, 163-183 habits aging and, 174 health correlation with, 168-169 improvement, social policies for, 170 longevity and, 168-169 of women, 169-176 preventive medicine and, 147 social position and, 56, 148 women's lack of AIDS research, impact of, 266-270 medical inattention to, 13 therapeutic relationship, models of, 13 Health care. See also Medical treatment(s) access to, 218-221, 359-360 age rationing and, 361-362 arrogance and, 98 context, relationships in, 103-104 decisions, patient education on, 62 feminist standpoint theory and extended, case report of, 107-109 need for, 95-96 gender in euthanasia and physician-assisted suicide and, 283, 290 impact of. See Gender global vs. local critiques of, 54-56 of heart disease patients. See Heart disease hierarchical arrangement in, 103 iatrogenic effects of, 56 lesbians, attitudes toward, 102 nearsightedness, 96 physicians, monopoly by, 55 of poor women of color, 57, 116—137, 358-359 professionals. See Health care professionals quality of, 219 race, impact of, 55, 116-117, 123-137, 157, 358, 363. See also Race; Racism

383 rationing by ordeal and, 358-359 reform feminist contribution to, 32, 351-370 women as caretakers, 357 religious affiliation and, 102 resource allocation. See Health care resource allocation social class, impact of, 123 subjects, biomedical research, 219 system. See Health care system unselfconsciousness, 96-98 women and dissatisfaction of, 144-45 exclusion from biomedical research, 218-221, 222, 359-360 policy debates and, 145 pregnancy, 222 utilization vs. male utilization, 11 of women of color, 54, 116-137 women's movement's criticisms of, 13, 29-30, 144-159 Health care professionals. See also Nurse(s); Physician(s) attitudes toward experiential knowledge, 57-58 patients, 145 scientific knowledge, 57-58 severely oppressed people, 61 socially marginal people, 61 bioethicists and, 18 decision making for women and, 11 as experts in nonmedical subjects, 148 female separation of feminism and bioethics, 14, 155 underpayment of, 150, 153 undervaluation of, 150, 153 gender inequities among, 80, 145 nurses' aides, 11 reporting drug use during pregnancy and, 128 Health care resource allocation, 25, 32, 68, 351-370 age-rationing scheme for, 361-362 among other goods, 366-367 basic human needs and, 56 caretaker role of women and, 357 demedicalization of health care system and, 364-365 democratization of health care system and, 364-365 funding proposals, 362-363 health care institutions and, white male dominance of, 56 justice in, 32, 351-367 outcomes, interest in, 365-366 proposals for, 362-367 Health care system. See also Health care resource allocation AIDS epidemic, response to, 252

384 Health care system (continued) alternative forms of care, 55 assumption of physicians' perspectives by bioethicists, 60-61 barriers to women, 145 bioethics critical capacity of, 19 delimitation of boundaries, 21 women's health movement's contributions to, 154-155 child welfare and, 233-234 demedicalization reforms, 364—365 democratization reforms, 364-365 euthanasia and physician-assisted suicide and gender inequities in, 290—291 United States vs. Netherlands, 296 femininity and, cultural norms of, 150 feminist ontology of connectedness and embodiment, 88 hierarchical organization of, 55—56 Human Genome Project and, 329-330 inattention to social deprivation and, 148 injustice in, 351 monopoly by, 55 nearsightedness, encouragement of, 96 nearsightedness in, 95, 96, 111 need for reform in, 351 predominance of women in, 149—150 preventive medicine and, 147 private sphere, 120-122 public sphere, 120-122 race and, 55, 116-117, 123-137, 157, 358, 363 self-help groups and, 151 social order inequality, perpetuation of, 120 specialization, 96, 97 systemic problems in, 154-155 women's anger at, 144-45 women's health movement criticisms of, 145-52 Health insurance euthanasia and physician-assisted suicide decision gender and, 290-291, 299, 306-307 status and, 290-291, 299, 306-307 funding proposal for, 362-363 gender and, 353 harm to patients, 21 harm to subjects, 21 lack of, 25, 168 national, 363 status of, 21 women and, employment-based, 362363 Health Omnibus Programs Extension Act of 1988 (HOPE), 270

Index Health policy bioethical analysis of, gender and, 12-13 health, defined, 163 Health status dieting and, 150 disease. See Disease(s) health habits and, correlation with, 168-169 ideal body type, 145 poverty and, 147 racism and, 147 self-determination of, 175 well-being and. See Well-being Healy, Bernadine, 13, 216, 235 Heart disease bypass surgery, race and, 123 communicative ethics and, 198-199 death, sex ratio of, 220 incidence, sex ratio of, 220 patients attitudes toward, 12, 13, 23, 359 gender of, 12, 13, 23, 359 risk, aspirin research on, exclusion of women from, 220-221, 359 Held, Virginia, 74 Hemophilia, 258, 320, 322 Hemophilia Cohort Study, 258 Hennekens, Charles, 221 Heterosexual HIV/AIDS Transmission Study (HATS), 258 Hierarchical roles, health care system nearsightedness, 96 "High Cost of Living, The" (Belkin), 7677 Hippocratic ethic, 67-68, 186, 288, 301, 307 Hispanics. See also Dimas case as subjects of feminist bioethics, 23, 125 HIV Epidemiology Research Study (HERS), 259 HIV-infected women. See also AIDS Centers for Disease Control, definition of AIDS, 266-269 gynecological problems, 266-269 reproductive freedom of, 232-233 Home care. See also Dimas case childbirth and, 364-365 health care system resource allocation and, 363 impact on women, 59, 150 respite care and, 152 by women, for family members, 80-81 Homelessness, health status and, 56 Homosexuality, See also Lesbians; Sexual orientation AIDS and, 259-260, 274-275 bioethics and, 24, 29, 96 genetics and, 336, 341 lesbians, 17, 73, 102 physicians' homophobia and, 147

Index hooks, bell, 123 Hormone changes, exclusion from biomedical research, 224 Hospital(s) drug testing during pregnancy and, 128 early release of patients by, 13 ethics committees, bioethicists' role on, 18, 19 public, drug use by pregnant women and, 129 Hubbard, Ruth, 326 Human Genome Project "anatomy as destiny" concept, 323-324 biological reductionism and, 24 critiques of, 325-327 ELSI program, critical capacity of bioethics and, 19 feminist bioethics and, 24, 32 gender-neutral language and, 109 health care system changes and, 329330 history of, 322-324 labeling and, 329 norms, establishment of, 329 philosophy of, 323-324 presymptomatic genetic testing, 332 "species-typical functioning" concept, 330 Human needs, withdrawal of basic resources and, 56 Human Use of Human Beings, The (Weiner), 188 Human values, 72 Human variability, Human Genome Project and, 325-329 Huntington's disease, genetic testing for, 322, 337 Hypercholesterolemia, familial, 322 Hysterectomy for cervical cancer, socioeconomic status and, 123 sexual difficulties after, physicians' attitudes toward, 147 unnecessary, 148 Ideal characteristics, genetic testing and, 328-329 Ikemoto, Lisa, 134 Illness. See Disease(s) Impartiality feminist challenge to, 26-27 standpoint theory and, 99 Incest, 13 Individualism approaches to justice and, 355 bioethics and, separation from feminism, 16-18 cultural feminism and, 81 genetic testing, critiques of, 325, 327330

385 group membership and, 17-18 liberal, 16-18 Individual(s) differences of, feminist critiques of genetic testing and, 328-329 justice and, 356 in moral analysis, 52 moral analysis, impact on, 28, 52 social group, differences within, 356 Inductivism, principlism and, 68 Infants clinical trials for HIV-infected women and, 262-264 harm to exclusion of women from biomedical research and, 229-237 male subjects of biomedical research and, 226-229, 231 moral duty to protect and, 229-237 reproductive freedom of HIV-infected women and, 232-234 social interest in child welfare and, 233-234 Information-transfer model of communication, 187-190 bioethical theory and, 204 factual vs. normative statements, 188189 prevalence in medicine, 187-188 technical scientific domain, 188 vs. communicative action model, 190191 Informed consent. See also Biomedical research, subjects' rights; Legal issues; Patient(s), rights bioethicists and, 61 class and, 29, 118, 126, 133-134, 193198 communicative action and, 185, 186, 190-193, 206 for euthanasia and physician-assisted suicide homicide charges and, 300-301 vs. domestic violence, 292 feminist approach to, 19-20 gender and, 29, 118, 126, 145, 193-198 health care system, women's anger at, 145 physician-patient relationship, truthtelling in, 130, 154 pregnant women, forced medical treatment of, 132-134 principlist moral reasoning and, 68 race and, 29, 118, 126, 133-134, 193-198 research and treatment differentiation, 12 sex between physicians and patients and, 13, 22 sterilization and, 124 truth-telling and, 130

386 Informed decision making, genetic testing and, 324-325 Inheritance dominant genes and, 320 mechanisms of, 320-321 Injection drug users (IDUs) with AIDS, exclusion from clinical trials, 261, 274 Institute of Medicine, Planning Panel of, 232 Institutional Review Boards (IRBs) bioethicists' role on, 18, 19 biomedical research equitable selection of subjects for, 217 inclusion of women in, 225-226 disagreement among, 25-26 feminist epistemology of bioethics and, 25-26 proportionate representation strategy and, 110 Insurance health. See Health insurance uninsured persons, 25, 168 Intelligence, labeling and, 329 "Interactive universalism," in discourse ethics, 186 International Conference on AIDS, VIIth, 261 Intrauterine devices (IUDs), 13, 22 Intuition, bioethics and, 175-176 Invisible Epidemic, The (Corea), 253 IRBs. See Institutional Review Boards (IRBs) Irigaray, Luce, 84 IUDs. See Intrauterine devices Jackson, Kathryn, 303 Jaggar, Alison M., 8, 82-83, 87, 102 James, William, 96, 98 Jecker, Nancy, 361, 362 Jefferson, Jessie May, 133 Jehovah's Witnesses, 17 Jews, Nazi atrocities against, 6 Johnson, Jennifer Clarise, 127-128 Jonsen, Albert R., 69, 104 Journal of the American Medical Association (JAMA), 67, 287 Justice in AIDS research, inattention to women in, 270-275 care and, 105, 106 classism and, 88-89 concept of, 53-54 distributive model, 54, 355 ethics of. See also Dimas case traditional ethics and, 50-51 vs. ethics of care, 50-51 euthanasia and physician-assisted suicide debate and, 304 feminist analysis of, 354-357

Index disruptive tendencies of feminism and, 353-354 dominant vs. less power groups and, 355-356 individualist/communitarian approach synthesis and, 355 particularity vs. acute perception, 353 power relations, 355-356 redistribution of goods, 355 social system domination vs. oppression in, 355 feminist ethics, 53-54 gender, 15, 95-96 differences in, 357-362 in health care resources allocation, 32, 351-367 feminist theories of justice, 354-357 gender differences and, 357-362 limited resources distribution, 357 rationing based on age, 361-362 skepticism, 352-354 in health care system, 357-362 in HIV epidemic, neglect of women and, 31, 253, 270-275 moral analysis principle in, 27-28, 68 prenatal diagnosis, 339-340 racism and, 88-89 reasoning from, 27 sexism and, 88-89 Justice and the Politics of Difference (Young), 355 Kant, Immanuel, 15, 16, 68, 69 Kaposi's sarcoma, 269 Kass, Leon, 167 Kass, Nancy, 31, 252-281 Katz, Jay, 130, 196, 308 Keller, Evelyn Fox, 328 Kennedy Institute, 236 Kevles, Daniel, 321 Kevorkian, Jack, 287-288, 298, 299 Kinney, Evlin, 222 Knowledge experiential, 57-58 genetic testing and, 325 health care system goals for changing, 151 withheld by, 145 of limitations, 97 scientific, 57-58 self-consciousness and, 97 societal power relations and, 57-58 Kohlberg, Lawrence, 202, 285-286, 303 Kristeva, Julia, 84 Kushner, Howard, 289 Labeling disability and, 339 genetic testing and, 322 intelligence and, 329

Index Lactation. See Breast-feeding Lamaze method, 364 Language gender-neutral issues, 49, 109 male bias of, 48 non-gender-neutral issues, 49, 109 Latinas, 356 Law. See Legal issues Legal issues. See also specific laws and cases; Biomedical research, subjects' rights; Informed consent; Patient(s), rights; Rights abortion, 118, 129-132, 151 AIDS and, 261, 269-270 bioethics and, 14, 16, 85, 89, 118, 120, 127 bioethics, lawyers' role in, 7 in biomedical research exclusion of women from, 31, 217219, 222, 223, 226-229, 230-233, 261, 271-275 refusal to participate by researcher, 229-234 regulations on, 217-218, 223, 225226, 234, 236, 261 communicative action and, 185, 193 domestic violence and, 292 drug use during pregnancy and, 29, 118, 127-129, 231 euthanasia and physician-assisted suicide and, 31-32, 282, 286, 290, 292-294, 296, 298, 300-302, 304307 feminist work on, 5, 9-10, 20, 49 forced medical treatment of pregnant women, 118, 132-134, 231 gender and, 12, 47 genetics and, 19 informed consent. See Informed consent physician-patient relationship confidentiality in, 127 private vs. public sphere, 22 truth-telling in, 29, 118, 126, 129-132 treatment refusal, 193 unwilling organ donors and, 230-231 Lesbians, 17, 73, 356. See also Homosexuality; Sexual orientation artificial insemination of, 102 feminist standpoint theory and, 102 Levine, Carol, 232-233, 252 Levine, Robert L., 225 Liability. See Legal issues Liberal feminists, 5 approach of, 72 bioethics approaches of, 73-77 Dimas case and, 78—79 reproductive issues, decision making on, 76 separate self-concept, 75 Liberal individualism, 16-18

387 Life experience. See Experiences, personal Lifestyle questions, 165 Life-sustaining treatment termination. See also Dimas case gender and, 308 societal power relations and, 57 vs. euthanasia and physician-assisted suicide, 298, 300 Lloyd, Genevieve, 53 Logue, Barbara, 80-81 Long, B. E., 187-188 Longevity gender differences in, 360-361 health habits correlation, 168-169 Longino, Helen, 25-26 Lugones, Maria, 101-102 MacDougall, David, 77, 81 McGraw, Deven, 31, 252-281 Maclntyre, Alasdair, 69-70 MacKinnon, Catharine, 87-88, 108 Mahowald, Mary B., 29, 70, 87, 95-115 Male. See Men Manning, Rita C, 72 Marxist feminists approach of, 72-73, 100 standpoint theory and, 100 Masculine partiality, women and, 108-109 Maternal thinking, 100, 107 Maternal work, 100 Mathieu, Deborah, 234 Maturity, thinking styles and, 8-9 Medicaid access to care and, 358—359, 366 health care quality and, 219 Medical decision making concerning end of life, in Netherlands, 294-295 genetic testing and, 342 health care resources allocation and, 366-367 health definition and, 163 information-transfer model of communication and, 187 nearsightedness and, 96 physician-patient relationship, truthtelling in, 129-130 physicians' infallibility and, 147-148 political context of, 124-125 power relationships and, 85 social context of, 124—125 women's rights, affecting potential offspring, 232-234 Medical education bioethicists' role in, 157 health definition and, 164—165 residency training, 148

sexism in, 149-150

women's health movement, critique of, 148, 152-153

388 Medical ethics. See Bioethics Medicalization of normal life processes, 148-149 of women's reproductive lives, 55, 134 Medical organization practices feminist theory applications and, 54—56 global vs. local critiques, 54-56 oppressive, 54-56 women, harm to, 22—23 Medical research. See Biomedical research Medical treatment(s) alternative, women's health movement literature and, 146 caring and, 107 choices exclusion of women from biomedical research on, 12, 218 gender and, 3-4 negative rights, 79 positive rights, 79 identified with care, 104 overtreatment and, 148 race and. See Race supportive relationships and, 106 Medline, study of literature on women, 264-266, 265t Men autonomous self-concept of, 74-75 in biomedical research participation of, 217 transmittal of adverse effects to offspring and, 226-229, 232 ethics of care, adoption of, 50-51 ethics of justice, adoption of, 50-51 female subordination attitudes of, 86 feminist bioethics and benefits of, 76-77 concerns of, 83 role in, 8 feminist theories of women's status in society and, 84-85 harm to unborn child, prosecution for, 231-232 home care and, 150 male domination attitudes of, 86 masculine objectivity, assumption of, 108-109 masculine universality, assumption of, 108-109 maternal thinking and, 100 moral reasoning of, 105 as norm for human being, 359-360 positions of influence and, 47 as suicide completers, 284 Mendel, Gregor, 320 Menopause cultural attitudes toward, 150, 151 medicalization of, 23, 55, 150 Menstrual extraction, self-help groups and, 151

Index Menstruation, medicalization of, 23, 55 Mentally ill, 57 Mental well-being. See Well-being Mercy killing. See Euthanasia and physician-assisted suicide Merton, Venessa, 31, 216-251 Middle-class women cesarean section consent, 134 health care system rationing by ordeal, 358-359 stake in, 136-37 impact of stereotypes of femininity, 171-173 informed consent and, 134 vs. poor women of color, physicianpatient relationship and, 125 Midwives, 13, 55, 364-365 Migraine headaches, gender and, 12, 359 Miles, Steven, 308 Militarism maternal work and, 100 resistance to, 100 Mill, John Stuart, 16, 68 Miller, Sherry, 288 Minow, Martha, 23, 28, 303-304, 328-329, 337, 355 Mitchell, Hazel, 77, 81 Mitchell, Juliet, 73 Moral community, 86. See also Community orientation Moral consensus, criticisms of principlism and, 70 Moral decision making abortion for disability and, 337-338 concrete narrative details and, 51-52 methods, 8-9, 25, 50-54 physicians and, 147-148 researchers' rights in, 229 Moral development theories euthanasia and physician-assisted suicide and, 285-286, 303-305 parenting and, 340 Morality of care, 303-305 euthanasia and physician-assisted suicide and, 303-305 partial, 303-305 Moral philosophy feminist work in, 9 physician-patient relationship, traditional, 126-127 Moral reasoning from abstract rules and principles, 1416 bioethics, separation of feminism from, 14-16 care-based, 104 dominance of principles in, 14-16 duty to protect fetus, 229-234 ethics of care and, 50-51

Index ethics of justice and, 50-51 feminist analytic methods and, 26-28 feminist standpoint theory, extended, 104 feminist theories of justice and, 354-357 men, women and, 105, 330-331 Morella, Constance, 259 Morgan, Kathryn, 174, 176 Mortality, health habits and, 169 Motherhood ethical caring and, 105 feminist standpoint theory and, 100 natural caring, 105 poor women of color and, social attitudes toward, 128 Multicenter AIDS Cohort Study (MACS), 259, 260 Mutagens, 226-229 Mutual understanding, in communicative ethics, 203-204 Nagel, Thomas, 99 Narrative ethics, 20, 70, 154 National Academy of Sciences, Institute of Medicine, 224 National Cancer Institute (NCI), 255 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 229, 270-271 National Heart, Blood and Lung Institute (NHBLI), 258 National Institute of Allergy and Infectious Diseases (NIAID) AIDS Clinical Trials Groups, 260-264 HIV research on women, 255-256 National Institute of Child Health and Human Development (NICHD), 255 National Institutes of Health (NIH), 216, 235 ADAMHA Policy Concerning Inclusion of Women in Study Populations and (NIH Policy), 235 AIDS-related grant applications, gender and, 254 gynecological research, lack of center for, 221 Human Genome Project, 323 Office of Research on Women's Health, 13, 235-236 Revitalization Act, 235 women with AIDS, research portfolio on, 254-260 National Research Act of 1974, 229 National Research Council, 323, 326 Naziism, 6, 321 Nedelsky, Jennifer, 28, 300 Nelson, Hilde Lindemann, 32, 351-370 Nelson, James Lindemann, 32, 351-370

389 Netherlands, euthanasia data, 283, 294295 Newark Perinatal Study, 256, 258 New England Journal of Medicine, 128, 133 New York City Human Resources Administration, Division of AIDS Services, 269 New York Times, euthanasia poll, 290 New York Times Magazine, 76-77 NIH. See National Institutes of Health (NIH) Noble, Gary, 256, 258-259 Noddings, Nel, 104-105, 106 Nonmaleficence classism and, 88-89 moral analysis, principle in, 27-28, 68 racism and, 88-89 sexism and, 88-89 Normative generalizations, moral analysis in, 27-28 Normative speech acts, in informationtransfer model, 189 Norms, male-defined, 48 Novello, Antonia, 235 Nozick, Robert, 354 Nurse-midwives, 13, 55, 153, 364-365 Nurse-practitioners, 13, 20, 153 Nurse(s) in bioethics, 7, 60, 152-153, 155 bioethics, separation from feminism and, 14 in Dimas case, 77-78, 80-81 ethics of care and, 105 gender stereotyping, 103 in health care system, 145, 149-150, 192, 201, 354, 365 literature on, 24 relationships with physicians, 17, 55, 103, 153 vs. physicians, 11, 354 views of, 97, 103, 105, 145, 151 Nurses' aides, 11, 55 in Dimas case, 78, 80 Nursing homes alternatives, 152 caregivers, gender of, 11 gender and, 150 Objectivity attainment of, 99 masculine partiality, assumption of, 108-109 Observational sciences, gender bias in, 910 Oedipal stage, 73 Office for Protection from Research Risks, 236 Office of AIDS Research, 259 Office of Research on Women's Health, 13, 235-236

390 Okin, Susan Moller, 28, 53-54, 203, 339340, 352-354 Older Women's League, 151 Oppositional thought, 84-85 Oppressed groups. See also Classism; Gender, oppression; Oppression; Racism; Sexism bioethicist priorities for, 61 bioethics field and, 60 health concerns of, 61 liberation of, 100 militarism and, 100 standpoints of, 100-101 standpoint theory, 100 Oppression. See also Classism; Gender, oppression; Racism; Sexism feminist standpoint theory on, 86-88 genetic testing, critique of, 328-329 poor women of color, experiences of. See Poor women of color Oregon health care resource allocation decision making in, 366 legalization of physician-assisted suicide in, 282, 296, 298 Organ transplants recipient selection, 25 unwilling donors, legal rights of, 230231 Osteoporosis, gender and, 12 "Otherness," feminist standpoint theory and, 102. See also Difference Our Bodies, Ourselves (Boston Women's Health Book Collective), 145, 148, 149, 151 Overtreatment, 148 Overweight. See also Weight health care for women and, 150 Pain relief, euthanasia and physicianassisted suicide and, 283, 287-288, 290, 298, 299, 302, 305-306 Pap smears, abnormal, 147 Parent-child relationship, prenatal diagnosis of fetal disability and, 338-339 Parsons, Talcott, 191 Partiality care and, 106 in moral understanding, 15, 27 Particularity bioethics principle of, 21, 68 feminist bioethics and, 23 justice and, 353 in moral analysis, 28 Paternalism autonomy as solution for, 58 as bioethics subject, 57-58 physician-patient relations and, 11, 22, 145 power relations in society and, 57

Index Patient(s) bioethicists and, 60-61 bioethics, contribution of, 26 class and. See Social class; Socioeconomic status control, health care system changes and, 151 harm to, feminist bioethics and, 21-23 health care decisions, education on, 62 individual needs of, 21 medical communication, power in, 204206 race and. See African Americans; Hispanics; Poor women of color; Race; Women of color reconstruction, feminist bioethics and, 118-120, 134-37 rights. See also Biomedical research, subjects' rights; Informed consent; Legal issues; Rights bioethical theory and, 202-203 bioethics and, 6, 13, 18, 21, 25, 121 communicative action and, 185 confidentiality and, 29, 118, 121, 126129 consent and, 29, 61, 118, 121, 124, 126, 132-134, 145, 185 euthanasia and physician-assisted suicide and, 31-32, 285-286, 298302 feminist analysis of, 24, 79, 202-203 refusal of treatment and, 132-134, 193, 300-301, 306, 308 truth-telling and, 29, 118, 121, 126, 129-132, 145, 205 social construction racism and sexism interaction and, 123 reconstruction proposal, 134-37 standpoint of, medical enterprise from, 21 Patriarchy health care system and, 103, 150 morality and, 354 racism and, 123 Peirce, Charles Sanders, 98-99 Pellegrino, Edmund, 67-68 Pelvic examinations, physicians' neglect of, 148 Pelvic inflammatory disease, AIDS and, 269 Perceived worth, gender differences in, 359-360 Perception, justice and, 353 Personal experiences. See Experiences, personal "Personal is political" theme, 155 "Phallogocentric" thought, 84 Philipson, Agneta, 222 Philosophy of science, feminist work in, 7, 9-10

Index Physical differences. See also Difference health care resources allocation and, 360-362 between men and women, 360—362 Physical fitness, health and, 167 Physical health, definition of health and, 164-167 Physician(s). See also Physician-patient relationship alcoholism/drug addiction, lack of understanding of, 147 attitudes toward abnormal Pap smears, 147 euthanasia and physician-assisted suicide, women's requests for, 293 infallibility, 148 unmarried pregnant women, 147 barriers to women's well-being and, 165, 168 beneficence breast cancer presymptomatic genetic testing and, 333-334 euthanasia and physician-assisted suicide and, 31-32, 301-303 impact of sexism, racism, and classism on, 88-89, 126 as principle in moral analysis, 27—28, 68 in bioethics, 7, 11 communication styles, 145 criticisms of women's health movement, 147-148 detachment of, 147 as dominant group in health care, 110 female, behavior of, 145, 149-150 female patients, performance of basic care for, 148 home care, recommendations of, 150 medical experts, self-presentation as, 147-148 moral experts, self-presentation as, 147-148 paternalism of, 11 perspectives of, 60-61 proportionate representation as remedial strategy and, 110 sexual abuse of patients, 13, 22 sexual relations with patients, 13, 22, 59 social prejudices and, 119 Physician-assisted suicide. See Euthanasia and physician-assisted suicide Physician-patient relationship communicative ethics in. See Communicative ethics, in physician-patient relationship in community clinics, 123 conversational model of, 130. See also Communicative ethics, in physician-patient relationship dying patients, impact of gender on, 3— 4

391 euthanasia and physician-assisted suicide, gender disparities in, 31, 290 feminist bioethics and, 30, 121-22 feminist standpoint theory, extended, use of, 107-109 forced medical treatment of pregnant women and, 132-134 gender stereotyping and, 55 generalized other concept and, 202-206 genetic testing and, 340-341 gynecologists and, 144, 145, 147 health care system, women's health movement goals for changing, 13, 151 individualism and, 16 institutional context and, 121 models of, 103-104 moral content of, 126-127 patient reconstruction and, 134-37 patient rights and. See Patient(s), rights patronizing behavior of physician and, 147 poor women of color and, 29, 118, 122— 134, 203 power issues in, 119, 147 in private offices, 123 race and, 29, 110, 117-118, 122-137, 194-195, 203 responsibility for changes in, women and, 147 sexual relations and, 13, 22, 59 trust, traditional vs. conversational model of, 130 truth-telling and, 129-32 women of color and, 29, 117-118, 123134, 195, 203 women patients and. See Gender, physician-patient relationship and women physicians and, 145, 149 Physician's Health Study, 220-221 "Point-of-viewlessness," unselfconsciousness and, 97 Political context care in, 54, 106 feminist vs. medical ethics, 52, 120, 121 health care system, barriers to women's participation in, 145 justice in, 54, 106 of physician-patient relationships gender and, 122, 124 race and, 122, 124 social class and, 122, 124 of poor women of color, 122—126 Pollution, as outdoor exercise obstacle, 169-170 Poor women. See also African Americans, poor; Poor women of color; Social class; Socioeconomic status abortion and, 130-132 access to health care and, 358-359

392 Poor women (continued) AIDS research, neglect of, 274 cervical cancer treatment, 123 euthanasia and physician-assisted suicide and, 291, 306 health care system and, 54 health habits, blamed for by physicians, 147 oppression of, feminist literature on medicine and, 54-55 well-being and, 168 Poor women of color. See also African Americans, poor; Poor women; Race; Racism; Social class; Socioeconomic status; Women of color abortion and, 118, 129-132 AIDS and, 274 bioethics and, 29, 116-137 drug use during pregnancy and, 23, 29, 118, 126-129 euthanasia and physician-assisted suicide and, 305 feminist analysis and, 86 feminist bioethics and, 5, 23 forced treatment during pregnancy and, 29, 118, 132-134 health care system and, 57, 116-137, 358-359 historical mistreatment of, 123-124 motherhood and, social attitudes toward, 128 patient reconstruction and, 29, 134137 perspective of, 5, 116-117, 120, 126, 133-134, 136 physician-patient relationship and, 122126, 203 confidentiality and, 29, 126-129 informed consent and, 118, 126, 132134 truth-telling and, 29, 118, 126, 129132 sterilization abuse and, 124 Pornography, 87-88, 150 Postmodernism bioethics and, 20 critique of feminist ethics, 84-85 of language, 102-103 feminist, 102-103 proportionate representation and, 111 Postpartum depression, 144 Poverty. See also African Americans, poor; Poor women; Poor women of color; Social class; Socioeconomic status bioethical research, gender discrimination in, 13 feminization of, 109

Index health needs of, power relations in society and, 57 hostility of social system toward, 355 ill health and, 147 Power. See also Power relations ethics as, 85 group differences and, 95 health care system and demedicalization of, 364-365 democratization of, 364-365 principles of bioethics classism and, 88-89 racism and, 88-89 sexism and, 88-89 Power relations bioethics field, composition and, 59-62 ethical theory and, 53 in feminist ethical analysis, 52 justice and, 355 labeling and, 329 in medical communication, 204-206 gender and, 193-198 race and, 193-198 social class and, 193-198 paternalism and, 57-58 perpetuation of, medicine's role in, 116, 118 physician-patient relationship and, 110, 124, 147 poor patients and, 79-80 restructuring of, feminist bioethics and, 62 sexual harassment and, 48 as subject for bioethics, 57-59 uniqueness of feminist thought and, 86 women's decisions on euthanasia and physician-assisted suicide and, 293-294 Pragmatists, criticisms of principlism, 70— 71 Pregnancy. See also Childbirth; Genetic testing, prenatal; Reproduction AIDS research and, 261-264 biomedical research, exclusion from. See Biomedical research, exclusion of women from connectedness and, 75 drug use during, 23, 29, 118, 126-129, 231 forced treatment during, 29, 118, 132134, 231 health neglect of, 221-222 prenatal genetic tests, development of, 318 unmarried, physicians' attitudes toward, 147 Pregnancy Discrimination Act, 228 Premenstrual syndrome, 172 Prenatal genetic testing. See Genetic testing, prenatal Pre-Oedipal stage, 73

Index President's Commission on Biomedical Ethics, 18 Preventive medicine definition of health and, 167 health care system critique and, 147 medical education and, 148 Pride, vs. arrogance, 98 Principlism. See also Casuistry; Narrative ethics analytic methods, feminist work on, 15, 26-28, 50, 52-54, 71, 119, 146, 154, 184, 303-305 in bioethics, 5, 14-16, 21-22, 50, 67-71, 118-119, 302-303 casuistry and. See Casuistry classism, impact of, 88, 126-134 debate over, 14-16, 67-71, 304 defined, 14-15, 69 emergence of, 67-68, 303-305 euthanasia and physician-assisted suicide debate and, 302-305, 307 Hippocratic ethic, transition from, 6768 Principles of Biomedical Ethics and. See Principles of Biomedical Ethics racism, impact of, 88, 126-134 reconstruction of patients and, 118— 120 sexism, impact of, 88 Principles of Biomedical Ethics (Beauchamp and Childress), 15-16, 24, 27, 6869, 82 Privacy of pregnant women, exclusion from biomedical research and, 230232 Private sphere, vs. public sphere, 9, 22, 72, 120-122, 196 Proportionate representation, extended feminist standpoint theory and, 109-111 Prostitutes, in AIDS research, 255 Psychological characteristics, moral decision making and, 70 Psychoanalysis and Feminism (Mitchell), 73 Psychoanalytic feminists, approach of, 72-73 Psychotherapists arrogance and, 98 sexual relations with patients, 13, 22 Public Health Service. See United States Public Health Service Public Health Service Act, Title X, 130132 Public sphere, vs. private sphere, 9, 22, 72, 120-122, 196 Purdy, Laura M., 30, 163-183, 337 Putnam, Hilary, 302 Quill, Timothy, 288 Quinlan case, 4, 14

393 Race. See also African Americans; Critical Race Theory; Hispanics; Latinas; Poor women of color; Racism; Slave women; Women of color access to health care and, 168, 291 AIDS and, 260-261, 264 bioethics and, 6, 14, 17-18, 20-21, 28, 29, 54-55, 57, 59-61, 116-137, 282 biomedical research and, 55, 224, 260261, 270, 274 bypass surgery and, 123 cervical cancer treatment and, 123 Dimas case and, 80 drug use during pregnancy and, 118, 127-129 ethical principles in medical communication and, 105 euthanasia and physician-assisted suicide and, 282, 290, 296-297, 298 euthanasia poll and, 290 feminist analysis of, 47, 54, 57, 83, 8687, 101-102, 110, 151, 155, 328, 354-355 forced treatment during pregnancy and, 133-134 health care system and, 55, 116-117, 123-137, 157, 358, 363 life-saving surgery and, 123 medical decision making and, 124-125 medical discourse and, 193-198, 203, 205 physician-patient relationship and, 110, 117-118, 122-137, 194-195, 203 confidentiality and, 29, 118, 126-129 informed consent and, 118, 126, 133134 truth-telling and, 118, 126, 129-132 proportionate representation and, 110 relationship to gender and class, 82, 117-118, 120, 122-136 standpoint theory and, 101-102 subjects, harm to, 21 Tuskegee Syphilis Study, 6, 17, 217, 297 well-being and, 168, 171 women, differences among, 101-102 Racism access to health care and, 168 bioethics and, 29, 88, 96 euthanasia and physician-assisted suicide and, 297 feminist standpoint theory and, 95 genetic research prior to World War II, 321 history of, 123-124, 128-129, 166, 297 patriarchy and, 123, 136 physicians and, 117, 147 Sexism and, 117 as threat to health, 147, 168 and well-being of women, 168 Radical feminists approach of, 72-73, 100

394 Radical feminists (continued) bioethics, approaches to, 73-77 connectedness and, negative side of, 75-76 Dimas case and, 79-80 reproductive decision making and, 76 separate self-concept and, 75 standpoint theory and, 100 Ramsey, Paul, 127 Rape euthanasia and physician-assisted suicide and, 308 medical inattention to, 13 sexism and, 10, 47 treatment of, 106 Rapp, Rayna, 125, 133-134 Rawls, John, 16, 27, 54, 68, 203, 339, 340, 352-353, 354 Reality perception, feminist standpoint theory and, 86-87 Reasoning. See Moral reasoning Recessive gene characteristics, 320 Relational caring, feminist analytic methods and, 27 Relationships. See also specific relationships breast cancer, presymptomatic genetic testing and, 334-335 failures of, euthanasia and physicianassisted suicide and, 291, 296-297, 299 feminist bioethics, as subject for, 58 feminist standpoint theory, extended, 103-104, 105 genetics and, 330-331 moral reasoning and, 15, 28 physician-patient. See Physician-patient relationship successful treatment, 106 Relativism criticisms of principlism and, 69 feminist, 84 feminist ethics charged with, 82-84 feminist refutation of, 99 objectivity and, 99 traditional, 84 Religious beliefs ethical stand and, 102 medical decisions by poor women of color and, 133-134 moral decision making and, 70 Report on Issues in the Inclusion of Women in Clinical Trials, 232 Reproduction. See also Pregnancy; Reproductive technologies body image and, 172 issues abortion. See Abortion cultural feminist positions on, 76 HIV-infected women, freedom of choice, 232-233

Index liberal feminist positions on, 76 overlooking of gender in, 11-14 radical feminist positions on, 76 medicalization of, 55 women's status and, 73 Reproductive technologies affluent men, benefits to, 55-56 artificial insemination, 102 choices of, 4 gender and, 4 principlism and, 68 "Rescue medicine," 147 Research. See Biomedical research Residency training, women's health movement's critique of, 148 Respect, as ethical principle in medical communication, 204-206 Rights. See also Biomedical research, subjects' rights; Patient(s), rights; Legal issues class and, 132 disability and, 335, 336-337 ethics of care and, 8-9, 285-286, 3O33O5 ethics of justice and, 72, 303-305 euthanasia and physician-assisted suicide and, 285-286, 297-305 feminist analysis of, 9, 17, 57, 202, 285286, 298-300, 303, 355 fetus and, 229-234, 263-264 gay, 336 genetics and, 329 movements, 13, 335 reproductive, 124, 128, 131-132, 232 Roberts, Dorothy E., 29, 116-143 Roe v. Wade, 130 Role-taking generalized other and, 202 in relationships, 103-104 Ross, W. D., 68 Rothman, Barbara Katz, 338 Ruddick, Sara, 100, 106, 107 Rust v. Sullivan, 29, 118, 130-132, 131-32 Ryan White Care Act, 269-270 Sacrifice, women in Greek tragedies and, 289-290 Schloendorff case, 14 Science critical capacity of bioethics and, 19 ethics as, 85 Scientists, in bioethics, 7 Searle, John, 189 Self-consciousness of contemporary feminist scholarship, 101-102 of dominant individuals, proportionate representation strategy and, 111 Self-determination, 17. See also Autonomy Self-help movement, 144

Index Self-sacrifice euthanasia and physician-assisted suicide and, 289-291, 296-297 gender and, 289 health care resources allocation and, 361 women in Greek tragedies and, 289290, 296 Sex differences. See Gender, differences; see also Difference Sexism bioethics and, 49 body image and, 175-177 euthanasia and physician-assisted suicide debate and, 282-283 feminist ethics charged with, 82-83 harm of, 47-48 ignored by bioethicists, 56-57 language and, male bias of, 48 in medical schools, 149-150, 152-153 predominance of men in influential positions and, 47 sex, prenatal testing for, 336 traditional bioethics, impact of principles on, 88 unconscious, 48 women's self-image, 171-176 Sex selection, prenatal diagnosis and, 32, 336, 337 Sexual abuse, of patients by physicians, 13, 22, 59 Sexual assault. See Rape Sexual harassment of female medical students, 14, 24, 153 of female patients, 59 of female physicians, 14, 153 gynecological care attitudes and, 150 vs. male sexual aggression, 48 Sexuality breast cancer, presymptomatic genetic testing and, 334-335 women's status and, 73 Sexual orientation. See also Homosexuality; Lesbians bioethics and, 29, 96 in feminist bioethics, 24 genetics and, 336, 341 proportionate representation and, 101, 110 Sherwin, Susan, 22, 28, 47-66, 83-84, 99, 119, 120, 121, 164-165, 217-218, 274, 325, 337 Shuy, Roger, 123, 194-195 Siblings, breast cancer, presymptomatic genetic testing for, 335 Sichel, Betty A., 71-72 Sickle-cell screening, 320, 322 African Americans as target population, 17 without consent, 124

395 women of color and, 124 Sims, Marion, 123-124 "Situated knowledges," 99 Slave women doctors' experimentation on, 123-124 reproductive coercion of, 128 Smith, Janet Farrell, 30, 184-215 Smoking, 169, 172-173 Social class. See also African Americans, poor; Classism; Poor women; Poor women of color; Socioeconomic status bioethics and, 57, 59-61, 116-118, 120 cervical cancer treatment and, 123 Dimas case and, 79 drug use during pregnancy and, 127129 euthanasia poll and, 290 feminist analysis of, 47, 83, 86-87, 101102, 110, 120, 122-123, 155, 328, 354 forced medical treatment and, 133-134 gender and, 82, 122-126 health care system and, 55-56, 117, 120, 123, 125, 157, 358 medical discourse and, 124-125, 203, 205 physician-patient relationship and, 123126, 196-197, 203 confidentiality and, 126-129 informed consent and, 126, 133-134 truth-telling and, 126, 130-132 race and, 82, 122-127 well-being and, 168, 171 women, differences among, 101-102 Socialist feminists approach of, 72-73, 100, 330 feminist standpoint theory and, 100, 102 Socialization differences in perceived worth and, 359-360 women and acceptance of masculine partiality and, 109 self-image of, 173 status of, 73 Social problems. See also specific social problems health status and, 56, 169-170 prejudices of physicians, 119 sources of, genetic research and, 326327 Social programs for AIDS patients, 269-270 health care cost reductions and, 365366 Social reality, health care reform and, 352 Social rules, communitarians' criticisms of principlism and, 69-70

396

Index

Social scientists, in bioethics, 7 Social Security Administration (SSA), 269 Social services, health care resource reallocation and, 365-366 Social well-being. See Well-being Society Hippocratic tradition in medicine and, 67-68 hostility toward minorities, 355 poor people, 355 women, 355 Socioeconomic status. See also African Americans, poor; Classism; Poor women; Poor women of color; Social class bioethical theory and, concrete other in, 203

drug use during pregnancy and, 128 good health habits, obstacle to, 169 health status and, 56 medical communication, ethical principles in, 205 medical discourse and, 194-195, 203 moral decision making and, 70 women vs. men, 47 "Species-typical functioning," 330 Speech acts communicative action model and, 192193 theory of, 189 Spelman, Elizabeth, 101-102, 303-304, 356 Spiritual resources. See also Religious beliefs moral decision making and, 70 Standpoint theory. See also Feminist standpoint theory abstract moral rules/principles and, 15 bioethics and feminist epistemology of, 26 principles of, 21 epistemological validity of, 99 "expressive-collaborative" theory and, 86 feminist standpoint theory and, 98-101 gap between standpoint of group and individual, 101 generalized and concrete other and, 202-204 impersonal standpoints, 99 personal standpoints, 99 subjugated groups, standpoints of, 100-101 Stanford Medical School, 153 Starr, Paul, 11 Stereotypes, female of beauty, 30, 150, 151, 171-176 bioethics and, 49, 59 biomedical research, women's exclusion from and, 222-225

ethics of care and, 51 euthanasia and physician-assisted suicide and, 306-307 femininity and, 30, 171 gender and, 48-49, 73, 101, 103, 171176, 307 genetics and, 326 health care and, 30, 55, 59, 103, 150, 151 health habits and, 170, 171-176 racist, 135 Sterilization abuse, 124, 128 Stratton, Pamela, 264 Strength, female, 173-174 Substance abuse. See Drug use/abuse Suicide gender differences in, 283, 284, 289-290 physician-assisted. See Euthanasia and physician-assisted suicide Surgery cosmetic, 59, 150, 174 hysterectomy. See Hysterectomy life-saving, 123 Tay-Sachs disease, 322 Teratogens, 226-229 Theologians, in bioethics, 7 Theoretical ethics bioethics and, 50 vs. "expressive-collaborative" mode, 85-86 Theory of Justice, A (Rawls), 203 Thought. See also Moral reasoning feminist ethics and, postmodernist critiques of, 84-85 feminist standpoint theory, 86-87 male-female differences in, 8-9 maternal, 100 phallogocentric, 84 Title X. See Public Health Service Act, Title X Todd, Alexandra Dundas, 123, 124, 187, 193, 194, 196 Tokenism, 26, 110 Tong, Rosemarie, 28, 67-94, 102 "Top-down" reasoning, in principlism, 15, 69, 302. See also Principlism Total Life Care Center, 78 Toulmin, Stephen, 69, 104 Tranquilizers, for menopausal women, 150 Treatments. See Medical treatment(s) Truth-telling. See Informed consent, truthtelling; Legal issues, physicianpatient relationship, truth-telling in; Patient(s), rights, truth-telling and Tuskegee Syphilis Study, 6, 17, 217, 297 Uninsured persons. See also Health insurance

Index decision making in bioethics and, 25 well-being and, 168 United States Public Health Service AIDS research, 264 Coordinating Committee on Women's Health, 1987 Report of, 254 HIV epidemic, neglect of women in response to, 31 Tuskegee Syphilis Study, 6, 17, 217, 297 Universal health coverage, euthanasia and physician-assisted suicide and, 296 Universality feminist challenge to, 26-27 "masculine partiality" and, assumption of, 108-109 standpoint theory, 99 Vaginitis, 144 Valverde, Mariana, 173 van der Maas, Paul, 294-295 Vender-consumer model, autonomy and, 58 Violence domestic. See Domestic violence health status and, 56 as obstacle to exercise by women, 160 Vulnerable people. See Oppressed groups Wages, gender differences in, 47 Walker, Cindy, 77, 81 Walker, Margaret Urban, 85-86 Wantz, Marjorie, 287-288, 298, 299 Warren, Virginia L., 83, 111 Weight control, coping mechanisms, 172-173 health correlation, 169 ideal, 150 overweight, health care for women and, 150 women's body image, 172-173 Weiner, Norbert, 188 Weiss, Ted, 256, 260 Welfare recipients attitudes toward motherhood for, 128129 sterilization abuse and, 124 Well-baby clinics, 167 Well-being distorted conception of, 176 exercise and, 175 health defined, 30, 167-168 objective barriers to, 168-171 requirements of, 168-169 subjective barriers to, 171-176 women, impact of lack of AIDS research on, 266-270 World Health Organization (WHO) definition of, 163, 165-167 Wendell, Susan, 339 Wertz, Dorothy, 336, 338, 339 West, Robin, 74-75

397 Whitbeck, Caroline, 167-168 Whitehead, Mary Beth, 14 WHO. See World Health Organization Wolf, Susan M., 3-43, 282-317, 355 Wolfe, Leslie, 235 Women. See also Gender; specific women's issues/aspects of women's lives assumptions about, as issue for bioethicists, 153 at-home care of the ill, impact of, 59 in bioethics field, 59-60 bodies of. See Body, female as caregivers, 13, 149-150 caretaker role of, health care reform and, 357 caring, impact of, 72 of color. See Women of color connectedness of, 75-76, 330-331 decision making in bioethics and, 25 devaluation of, 58-59 differences among, 23, 101-102 discriminatory programs against, feminist bioethics and, 54—56 equality of, for prenatal diagnosis of fetal disability, 338 ethics of care, adoption of, 50-51 ethics of justice, adoption of, 50-51 euthanasia and physician-assisted suicide and. See Euthanasia and physician-assisted suicide experiences of. See Experiences, personal exploitation of, 105 gender, impact of. See Gender gynecological care, attitudes toward, 150 harm to AIDS research, neglect of, 266-275 breast cancer, presymptomatic genetic testing and, 333-335 connection thesis and, 75-76 as healers, in colonial America, 11 as health care consumers, 149—150 in health care system, 4, 145, 151-152 health insurance and, 290-291, 296, 305, 306, 353, 362-363 "masculine partiality" and, acceptance of, 108-109 medical care, dissatisfaction with, 144145 medical discourse and, 194 medicalization of health care, attitudes toward, 55 medical knowledge, acquisition of, change in health care system and, 151 medical treatment, equality in, 196-197 in medicine, 24 moral reasoning of, 105 nature of, feminist standpoint theory and, 86

Index

398

Women (continued) in nursing, 24 objective barriers to well-being and, 168-171 perceived worth of, 359-360 physician contacts of, 11 in positions of authority, 274-275 race, impact of. See Race; Women of color as research subjects, exclusion. See Biomedical research roles of, and advice of physicians, 148149 in science, 24 and self-sacrifice. See Self-sacrifice sexism, impact of, 47-48 social class, impact of, 82 societal definitions of illness and, 12 status of, 73 as suicide attempters, 284 Women and Infants Cohort Study, 256, 258 Women and Infants Transmission Study (WITS), 256 Women of color. See also African Americans; Hispanics; Latinas; Poor women of color; Race; Racism; Slave women abortion and, 118, 131-132 access to health care and, 123, 356 AIDS and, 23, 261, 264, 274 bioethics and, 5, 23, 25, 29, 116-137 drug use during pregnancy and, 23, 29, 127-129 feminist analysis and, 86, 122-123, 125, 356 feminist bioethics and, 5, 23 forced treatment during pregnancy and, 29, 118 health care system and, 54, 116-137 historical mistreatment of, 123-124 motherhood and, social attitudes toward, 129 patient reconstruction and, 29, 116-137 perspective of, 29, 116-137 physician-patient relationship and, 117118, 123-126, 195, 203 confidentiality and, 29, 118, 126-129 informed consent and, 118, 126, 132134

truth-telling and, 29, 118, 126, 129132 sickle-cell screening and, 124 sterilization abuse and, 124 Women's Estate (Mitchell), 73 Women's health centers, creation of, 152 Women's Health Initiative, 13 Women's health movement, 13 bioethics and, 5, 29-30, 144-157, 156 common goals of, 146 goals, 152-157 health care, critique of, 13, 154-155 medical education, critique of, 152153 medicine, critique of, 13, 154-155 values, 152-157 health care system and critique of, 13, 147-148 transformation of, 145-146, 150-152 literature, 30 alternative treatment methods and, 146 bioethicists and, 153-154 themes of, 145-146 views of women from diverse backgrounds, 146 medical education, critique of, 147-148 medicalization of normal life processes, critique of, 148-149 origins of, 144 physicians, critique of, 147-148 self-help groups, role of, 151 women patients, as representative of experience of, 146 Women's Interagency HIV Study (WIHS), 259 Women's self-help health movement. See Women's health movement Women's standpoint, vs. feminist standpoint, 101 Work hours, health status and, 169 World Health Organization (WHO), definition of "health," 163-168 X-linked disorders, 320 Yeast infections, 157 Young, Iris Marion, 28, 31, 32, 54, 197, 273, 274, 355

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