Ethics and Epidemics, Volume 9 (Advances in Bioethics)

LIST OF CONTRIBUTORS George J. Annas

Boston University School of Public Health, Boston, MA 02118, USA

Robert Baker

Alden March Bioethics Institute, Albany, New York, USA Union Graduate College, Union College, Schenectady, NY 12308, USA

John Balint

Alden March Bioethics Institute, Albany Medical College, Albany, NY 12208, USA

Angela Ballantyne

Department of Medical Education, Flinders University, Adelaide, SA 5001, Australia

Chalmers C. Clark

Center for Philosophy and History of Science, Boston University, Boston, MA 02215, USA Union College, Schenectady, NY 12308

Paul J. Edelson

Columbia University College of Physicians & Surgeons, New York, NY 10032, USA

Daniel W. Fitzgerald

Division of International Medicine and Infectious Diseases, Weill Medical College of Cornell University, New York, NY 10021, USA

Shane K. Green

Social Impact Programs, Ontario Genomics Institute, Toronto, Ontario, Canada, M5G 1L7

Jaro Kotalik

Centre for Health Care Ethics, Lakehead University, Thunder Bay, Ontario, Canada P7B 5E1

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Jacob F. Kurlander

Institute for Ethics, American Medical Association, Chicago, IL 60610, USA

Laurence B. McCullough

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA

Sean Philpott

Alden March Bioethics Institute, Albany Medical College, Albany, NY 12208, USA

Nola M. Ries

Health Law Institute, Law Centre, University of Alberta, Edmonton, Alberta, Canada T6G 2H5

Martin Strosberg

Alden March Bioethics Institute, Albany, New York, USA Union Graduate College, Union College, Schenectady, NY 12308, USA

Angela Wasunna

The Hastings Center, Garrison, NY 10524, USA

Matthew K. Wynia

Institute for Ethics, American Medical Association, Chicago, IL 60610, USA

Laurie Zoloth

Center for Bioethics, Science Society, Northwestern University, Chicago, IL 60611, USA

Stephen Zoloth

Office of the Dean, Bouve´ College of Health Sciences, Northeastern University, Boston, MA 02115, USA

INTRODUCTION TO ETHICS AND EPIDEMICS This volume of essays is based upon the proceedings of a conference on ‘‘Ethics and Epidemics’’ hosted in March 2004 by Albany Medical College and the Graduate College of Union University in the wake of the SARS epidemic. The SARS epidemic was a stark reminder of how quickly infectious disease can spread in our era of fast and frequent worldwide travel. Furthermore, it reawakened interest in and debate about major ethical, policy, political and social issues that arise as societies respond to such acute threats to health, life and liberty. Current concerns about the threat of avian influenza, due to the H5N1 virus, and its potential to evolve into a worldwide pandemic highlight the urgent need to address these issues. Epidemics and pandemics – uncommonly large outbreaks of common or emergent infectious diseases that are either locally contained or that spread worldwide – have not only affected the demographic development of mankind, as highlighted in Table 1, but these oft-described ‘‘plagues’’ also have helped shape our cultural values and our political practices. Epidemic and pandemic diseases have devastated the economies of city–states and nations, reined in or silenced the dogs of war and even caused entire empires to fall into ruin. From Thucydides’ account of the Peloponnesian War, for example, we know that the Plague of Athens contributed to the end of the Golden Age of Greece. This epidemic, which we now believe to have been caused by a particularly virulent strain of typhoid fever, killed an estimated quarter of the Athenian population, including Pericles, the military and political leader of the Attican forces. A subsequent succession of weak leaders allowed Sparta and its allies to emerge victorious, but the Plague of Athens had a social and political impact that went far beyond simple regime change. Epidemic disease also sowed the seeds of communal strife; Athenians felt abandoned by the Olympian gods and began to turn away from them, and the strain of living under a perceived death sentence lead many to lose their fear of and traditional obedience to religious and political authority figures. Even the mere threat or fear of epidemic disease can have major political and social consequences. In February of 1976, for instance, officials at the xiii

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Table 1. Year(s)

Historical Epidemicsa.

Location

430 BCE

Athens

165–180

Italy/Roman Empire

251–266

Roman Empire

541–542

Constantinople/ Eastern Roman Empire Europe

1347–1348 1519

Disease Plague of Athens (Smallpox? Typhoid Fever?) Antonine Plague (Smallpox? Measles?) Plague of Cyprian (Smallpox? Measles?) Plague of Justinian (Bubonic plague?) Black Death (Bubonic plague) Smallpox

1600s

Central America/ Aztec Empire South America/Inca Empire Europe

1629–1631

Northern Italy

1665–1666

Great Britain

1679

Austria

1690–1878 1720–1722

Eastern and Southern United States Southern France

1816–1826

India/East Asia

Great Plague of Marseilles Cholera

1829–1851

Europe/Russia

Cholera

1852–1860 1837

Russia North America

Cholera Smallpox

1889–1890 1918–1919 1957–1958 1868–1869

Worldwide Worldwide Worldwide Worldwide

1981

Worldwide

Asiatic flu (Influenza?) Spanish flu (Influenza) Asian flu (Influenza) Hong Kong flu (Influenza) HIV/AIDS

1525–1526

a

Est. Number of Deaths 150,000

5 million 3–5 million Up to 25 million 34 million 22 million

Smallpox

3–7 million

Black Bane (Anthrax) Great Plague of Milan (Bubonic plague) Great Plague of London (Bubonic plague) Great Plague of Vienna (Bubonic plague) Yellow Fever

60,000 280,000 75,000–100,000 76,000 50,000–75,000 100,000 Unknown; 100,000 recorded for British Army in Asia Unknown; 26,101 deaths in London alone in 1831–1832 1 million Unknown; Native American tribes decimated 250,000–500,000 21–40 million 1–4 million 1–2 million Over 25 million to date

This list of historical epidemics should, by no means, be considered complete. Many major epidemics have never made it into the history books. For our purposes, we have limited this table to some of the epidemics and pandemics for which we have historical records and which were estimated to have killed at least 50,000 individuals. Many epidemic and endemic diseases, such as yellow fever, are also under-represented.

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U.S. Centers for Disease Control and Prevention (CDC) reported that swine flu had infected several army recruits in Fort Dix, New Jersey. A handful of prominent scientists predicted that a pandemic as destructive as the ‘‘killer flu’’ of 1918 could start within a few months, prompting then President Gerald Ford to sign the National Influenza Immunization Program (NIIP). The NIIP, which appropriated $135 million for mass vaccination of Americans against swine flu, was an effort unprecedented in the annals of public health programs, both in scope and in alacrity. It also was completely unnecessary – there was no swine flu epidemic. A single soldier at Fort Dix died of swine flu, whereas the government’s hastily implemented inoculation program left hundreds of Americans dead or disabled from Guillain–Barre syndrome, a rare neurological disorder triggered by the swine flu vaccine. The swine flu fiasco also reduced public confidence in the federal government and helped foster a cynicism about public health policy that still lingers. The recent failures of the U.S. government in preparing for and responding to crises, such as the shortfall of influenza vaccine in 2004 and the devastation of the Gulf Coast by Hurricane Katrina, have further eroded public confidence in the public health planning process. In order to achieve the critical goal of gaining – or regaining – the public’s trust in governmental health policy, there must be open discussion of the ethical, legal and scientific issues that will set the parameters within which acceptable and (hopefully) effective plans to combat epidemic disease will be developed. The ethical issues discussed in this volume and the policy options suggested to address them offer a good starting point. Public education and open discussion of these topics are necessary, particularly if the need for rapid but effective public health policy development and implementation should arise. The pivotal moral, political, societal and policy issues raised by grave epidemics can be classified into four major areas: (1) the clash of individual liberty and autonomy with public safety; (2) government responsibility for advance planning, education and building of public confidence and trust; (3) the professional responsibilities and duties, and the limits of altruism, of physicians, nurses and other public service personnel during an epidemic; and (4) the ethical, social, economic and infrastructure issues that arise when conducting clinical research in developing countries, which often are the most affected by outbreaks of infectious disease and yet are the least prepared to deal with them. Because of severe constraints on resources, these countries face the difficult task of unavoidable rationing of care. Each of these ethical, legal and social issues is addressed sequentially in the following chapters.

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The first group of issues relates to the clash between individual autonomy and rights on the one hand, and public health, societal welfare and government authority on the other. These conflicting interests concern the limits on restraints on individual freedom and liberties, such as mandatory isolation or quarantine of infected or exposed individuals, or mandated immunization of front-line healthcare workers. Should there be limits both to individual autonomy and government power? Where should the balance be between individual rights and public health? The conflict between personal rights versus public authority are addressed in extensive discussions of the specific issues involved in protecting civil liberties while still giving the government the necessary authority to deal with public health issues, as presented by George Annas in Chapter 1 and Paul Edelson in Chapter 2. Both authors offer arguments to support a compromise position on the balance between individual rights and societal needs. The next two chapters address the second group of policy issues brought to light by the SARS epidemic. These concern governmental responsibilities for public education and preparation. In Chapter 3, Nola Ries reviews the lessons learned from the Canadian experience with trying to control the outbreak with quarantine. She argues for the need for careful advance planning, societal education and compromise. In Chapter 4, Jaro Kotalik discusses issues raised by attempts to compel front-line healthcare workers and civil defense workers to accept immunization. He also advocates public education and compromise based on the lack of sufficient empiric data to support a policy of mandatory vaccination. A third set of major ethical and moral issues concerns the professional responsibilities and other duties of physicians and other healthcare professionals in regard to the health and welfare of patients, and to society as a whole during an epidemic. While there are many accounts of individual dedication at great personal risk in such situations, such stories of medical heroism are a historical anachronism. It was not until 1847 that the American Medical Association (AMA) became the first professional organization to promulgate a set of ethical rules outlining a physician’s responsibilities during an epidemic. Robert Baker sets the stage for discussing professional duties by providing an historic overview of physicians’ changing moral and ethical responsibilities in Chapter 5. The inherent conflicts between professional duty, reasonable risk and responsibility to family and self then are discussed in detail by Matthew Wynia and colleagues in Chapter 6, Chalmers Clark in Chapter 7 and Laurence McCullough in Chapter 8. They examine the AMA’s original 1847 edict and its subsequent amendment,

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exploring the implications of the AMA’s rules and contrasting these with the requirements of a policy of reasonable risk. These chapters also examine the problems of governmental responsibility in preparation for and quick effective action during an epidemic. Failure to think ahead and to adequately prepare for an outbreak, or to provide clear and cogent leadership can lead to confusion and great public anxiety, as happened with the response to the bioterror attacks in 2001 and the flu vaccine shortage in 2004. In the latter case, a major health calamity was avoided only because of the good fortune of a mild influenza season. The importance of thoughtful, understandable and continuing public education about impending or potential epidemics is illustrated by the current concerns about avian flu, as discussed by Laurie and Stephen Zoloth in the closing chapter of this volume, 11, as well as by Nola Ries in Chapter 3. Governments must ensure a clear, complete and trustworthy flow of information to the public about preparations for a possible epidemic, the role of potential therapies and vaccinations, and potential restrictions on individual rights. The fourth group of ethical issues relates to clinical research in developing nations, whose citizens are often the first and the most severely affected by epidemics. Clinical trials of vaccines and of possible treatments are often appropriate in such communities, especially if they address diseases prevalent in the population to be tested. But undertaking such trials in the cultural, social and economic settings of these communities present their own unique set of ethical and moral issues. For example, there is often the problem of obtaining free and informed consent for participation in clinical trials. Many of these societies are patriarchal, where the head of the community makes decisions for or against participation, so that it is sometimes difficult to know how truly informed and willing the individuals in the community are when they participate in clinical research. We also should be concerned with the development of rules that govern such clinical research. This became a major issue during recent clinical trials of short-term antiretroviral treatment to prevent perinatal transmission of HIV-1. Although intensive pre- and post-natal treatment with AZT had been shown to be highly effective in preventing mother-to-child transmission of HIV-1 in the United States, it was considered too cumbersome and expensive to be used in the developing world. When designing clinical trials to test the efficacy of short-course antiretroviral treatment in preventing perinatal transmission of HIV-1 in Thailand and Cameroon, however, the researchers elected for reasons of cost and expediency to use a placebo-control protocol. Such a study design would have been unacceptable in Europe or the U.S.

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In addition to the problems associated with clinical research in poor countries, there also are huge ethical issues associated with the delivery of health care throughout most of the world. Economic limitations raise obvious questions of distributive justice when deciding how to allocate scarce healthcare resources to the residents of developing nations. Finally, there is the issue of appropriate compensation for participating communities, many of which lack the necessary infrastructure to provide ongoing medical care for their citizens. Since performing clinical trials in developing nations is generally less costly than similar trials in developed countries, would it be appropriate to require the sponsors of trials in developing nations to invest a proportion of their savings in the development of the human and physical infrastructure needed to allow the participating community to provide such care? Angela Wassuna and Daniel Fitzgerald in Chapter 9 and Angela Ballantyne in Chapter 10 address these issues. In the final chapter, Laurie and Stephen Zoloth examine the issues raised in the preceding chapters from the point of view of the responsibilities these issues place upon the bioethics community. They conclude that bioethicists must reflect on their responsibilities to help societies prepare for what they believe is an inevitable major epidemic or terrorist attack and thus moderate the magnitude of damage to society. The bioethics community can help bridge the divide between the supporters of a libertarian view of society and those who favor a communitarian approach. Epidemic and pandemic disease, whether viral or bacterial, naturally occurring or the result of a bioterrorist attack, will not respect social or political boundaries. To deal with the disruption caused by an outbreak on the scale of, or even larger than, the 1918 flu pandemic will need unprecedented social and political solidarity. Long before such an outbreak occurs, scientists, politicians, epidemiologists, bioethicists and the public need to discuss the ethical, legal and social issues raised and to reach compromises that will allow effective public health measures to be deployed. John Balint Sean Philpott Martin Strosberg

CHAPTER 1 THE STATUE OF SECURITY: HUMAN RIGHTS AND POST-9/11 EPIDEMICS$ George J. Annas Our enemies are innovative and resourceful, and so are we. They never stop thinking about new ways to harm our country and our people, and neither do we. President George W. Bush on signing the Defense Appropriations Act, August 5, 2004

Immediately after September 11, 2001 the U.S. government closed the Statue of Liberty to the public. It took almost three years to reopen Liberty Island, just in time for the Republican National Convention. The public can again visit, but little is the same. Those wishing to take the ferry to the island, for example, must submit to airport–like screening, as well as bag checks, including bomb-sniffing dogs, upon arrival. On the boat trip, the National Park Service has a new recorded ‘‘welcome’’ which asserts that although historically the Statue of Liberty symbolized freedom, it is now ‘‘a symbol of America’s freedom, safety, and security.’’ Similar screening is also $

Based on presentation at ‘‘Ethics and Epidemics’’ conference at Union University, March 26, 2004. Portions of this chapter are adapted from ‘‘Human Rights and Health’’ (in) George J. Annas, American Bioethics: Crossing Human Rights and Health Law Boundaries, Oxford U. Press, NY, 2005, 19–26; Annas, G. J., Blinded by Bioterrorism: Public Health and Liberty in the twenty-first century, Health Matrix: J. of Law-Medicine 2003; 13: 33–70; and Annas, G. J., Puppy Love: Bioterrorism, Civil Rights, and Public Health, Florida Law Rev. 2003; 55: 1171–1190.

Ethics and Epidemics Advances in Bioethics, Volume 9, 3–28 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09001-7

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required to view the Liberty Bell in Philadelphia. We have not yet renamed the Statue of Liberty, the ‘‘Statue of Security’’; or the Liberty Bell, the ‘‘Safety Bell,’’ but safety and security have been consistently promoted as at least as important as liberty, and often more important, since 9/11. The next stop after Liberty Island is Ellis Island, the site of screening for more than two million immigrants to America in the early twentieth century. The most rigorous part of screening immigrants involved federal uniformed public health service physicians whose main duty was to prevent immigrants with contagious diseases from entering the country. Few federal public health officials other than the Surgeon General any longer wear military uniforms, and most public health activities now are done under state or local jurisdiction. But 9/11 has affected public health as well, as public health has been called upon to prepare the nation for a ‘‘bioterrorist attack’’ utilizing lethal disease agents, like smallpox or anthrax. Many public health officials hope that public health can take advantage of the new funding available for terrorism preparedness, and not only do its part in national security, but also make ‘‘dual use’’ of the funding to help it fulfill its core missions of protecting the publics’ health and preparing for ‘‘natural’’ epidemics. September 11 was an event, not an epidemic, but the U.S. reacted to it as if it portends an actual epidemic of terrorist attacks against us. September 11 has been viewed by many in the public health community as a signal of a coming pandemic: akin to the rise of SARS in China, or a novel form of bird flu in Asia (Garrett, 1994; Markel, 2004). The public health service has been asked to prepare for both natural and terrorist-induced epidemics simultaneously. Does 9/11 mean we must make fundamental changes in public health practice regarding epidemic control and revert to nineteenth century Ellis Island-type quarantine and forced treatment? Must we trade off human rights and civil liberties for increased safety and security? These are important and complex questions. In this chapter I will argue that the answer to both these questions is no, the movement in public health toward the adoption of a modern health and human rights ethical framework begun before 9/11 should continue. Osama bin Laden and his homicidal al-Qaeda followers present a real danger to Americans and the U.S. should bring them to justice for their crimes. The U.S. is more vulnerable to terrorist attacks than we had believed; and so we should strengthen our defenses. But we should not undermine our lives and our values by overreacting to the threat of terrorism. Preserving a human rights framework in the war on terrorists both preserves core American values and makes it more likely that we will prevail in the long run. Ignoring or marginalizing human and constitutional rights, and

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treating Americans themselves as suspects or actual enemies is counterproductive and dangerous in itself. I will support this conclusion with specific post-9/11 examples, such as public health preparedness plans for mass smallpox vaccination, the experiences of public health in the SARS epidemic, the enactment of new state public health vaccination and quarantine laws, and the use of torture on terrorist suspects and prisoners of war. Public health professionals are the ‘‘good guys’’ and rightly want to protect the publics’ health. However, the world has changed since the early nineteenth century, and reliance on coercion rather than education is no longer either legally justifiable or likely to be effective. In this regard, what might be labeled ‘‘public health fundamentalism’’ is as dangerous to the health and safety of Americans as Islamic religious fundamentalism. The language of human rights also has the great advantage of being universal and thus global. Neither the fight against terrorists, nor the fight against epidemics, can be successfully waged on a local, state, or even national level alone. Terrorists and pathogens alike easily cross national boundaries and both can only be effectively confronted by a global, cooperative strategy. ‘‘Safety first’’ is a good thought, as is the Hippocratic injunction, ‘‘first, do no harm’’; but neither safety nor inaction are ends in themselves, only means to promote health and human rights. Sacrificing human rights for safety is almost never necessary and almost always counterproductive in a free society. Benjamin Franklin went further in expressing an American thought from ‘‘the land of the free and the home of the brave,’’ saying, ‘‘Those who would give up an essential liberty to purchase temporary security deserve neither liberty nor security.’’

THE HEALTH AND HUMAN RIGHTS FRAMEWORK The modern human rights movement, like American bioethics, was born from the devastation of World War II. The multinational trial of the major Nazi war criminals at Nuremberg following World War II was held on the premise that there is a higher law of humanity (derived from natural law rules based on an understanding of the essential nature of humans), and that individuals may be properly tried for violating that law. Universal criminal law includes crimes against humanity, such as murder, genocide, torture, and slavery. Obeying the orders of superiors is no defense: the state cannot shield its agents from prosecution for crimes against humanity. The United Nations was formed almost immediately after World War II. Its Charter, signed by the 50 original member nations in San Francisco on

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June 26, 1945, spells out the goals of the United Nations. The first two are: ‘‘to save succeeding generations from the scourge of wary; and to reaffirm faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small.’’ After the charter was signed, the adoption of an international bill of rights with legal authority proceeded in three steps: a declaration, two treaties, and implementation measures. The Universal Declaration of Human Rights was adopted by the United Nations General Assembly in 1948 without dissent, as a ‘‘common standard for all peoples and nations.’’ As international law expert Henry Steiner notes, ‘‘No other document has so caught the historical moment, achieved the same moral and rhetorical force, or exerted so much influence on the human rights movement as a whole’’ (Steiner, 1998). The rights spelled out in the declaration ‘‘stem from the cardinal axiom that all human beings are born free and equal, in dignity and rights, and are endowed with reason and conscience. All the rights and freedoms belong to everybody y’’ (Steiner, 1998). Unlike ethical precepts that primarily govern individual conduct, human rights are primarily rights individuals have against governments. Human rights require governments to respect these rights by refraining from doing certain things, such as engaging in torture or limiting freedom of religion. Governments also need to protect human rights by preventing their violation by private actors, and they need to fulfill human rights by providing education and nutrition programs. The United Nations adopted the Universal Declaration of Human Rights as a statement of aspirations. Legal obligations of governments were to derive from formal treaties that member nations would individually sign and incorporate into their domestic law. Because of the cold war, with its conflicting governmental ideologies, it took almost 20 years to get agreement on the texts of the two major human rights treaties. The UN General Assembly adopted the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social, and Cultural Rights on December 16, 1966. The United States ratified the International Covenant on Civil and Political Rights in 1992, but not surprisingly given our capitalist economic system with its emphasis on private property, has yet to act on the International Covenant on Economic, Social, and Cultural Rights. The United States has, nonetheless, signed other treaties that have special significance in the war on terror, including the Geneva Conventions, the Genocide Treaty, and the Torture Treaty. The rights spelled out in the International Covenant on Civil and Political Rights include rights to equality, rights to liberty and security of person,

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rights to freedom of movement, freedom of religion, freedom of expression, and freedom of association. The International Covenant on Economic, Social, and Cultural Rights focuses on human well-being, including the right to work, the right to fair wages, the right to a decent living, the right to safe and healthy working conditions, and the right to be free from hunger. It also includes the right to education and ‘‘the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.’’ The Universal Declaration of Human Rights and the two subsequent treaties form a global human rights framework for action that has special relevance to global health. The relationship between health and human rights has been most persuasively articulated and most tirelessly championed by my colleague Jonathan Mann, the first director of the World Health Organization’s Global Program on AIDS, whose life was tragically cut short in the September 1998 crash of Swiss Air flight 111. The World Health Organization has since adopted the health and human rights framework as its own. By broadening our perspective, human rights language highlights not only human freedoms, such as self-determination, but also basic human needs, such as equality, education, nutrition, and sanitation, whose improvement will have a major impact on improving human health. World War II, arguably the first truly global war, led to a global acknowledgment of the universality of human rights and the responsibility of governments to promote them. Jonathan Mann perceptively noted that the AIDS epidemic can be viewed as the first global epidemic because it is taking place at a time when all countries are linked both electronically and by easy transportation (Mann, Gruskin, Grodin, & Annas, 1999). Like World War II, this worldwide epidemic requires us to think in new ways and to develop effective methods to treat and prevent disease on a global level. Globalization is a mercantile and ecological fact; it is also becoming a health care reality. The challenge facing medicine and health care, both before and after 9/11, is to develop a global language and a global strategy that can help to improve the health of all of the world’s citizens. Clinical medicine is practiced one patient at a time, and the language of medical ethics is the language of self-determination and beneficence: doing what is in the best interests of the patient with the patient’s informed consent. This is powerful, but has little direct application in countries where physicians are scarce and medical resources extremely limited. Public health deals with populations and prevention – the necessary frame of reference in the global context. In a one-to-one doctor–patient relationship, for example, a combination of anti-retroviral drugs for AIDS treatment makes sense. In the worldwide pandemic, however, such treatment

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may be available to fewer than 5% of the world’s people with AIDS. The availability of a vaccine against a pandemic flu will also be severely limited. This is not just a matter of money, but also a matter of health care infrastructure and a lack of basic knowledge regarding how to effectively deliver drugs. In dealing with the AIDS pandemic, it became necessary to deal directly with such issues as discrimination, immigration status, the rights of women, rights to privacy and informed consent. It was also necessary to address issues of education and access to health care. Although it is easy to recognize that population-based prevention is required to effectively address the AIDS epidemic on a global level (as well as, e.g., tuberculosis, malaria, and tobacco-related illness), it has been much harder to articulate a global public health ethic, and public health itself has had an extraordinarily difficult time developing its own ethical language. Because of its universality and its emphasis on equality and human dignity, the language of human rights is well suited to public health and to serve as the basis of public health ethics. On the occasion of the fiftieth anniversary of the Universal Declaration of Human Rights, in 1998, I suggested that the Universal Declaration of Human Rights itself sets forth the ethics of public health, since its goal is to provide the conditions under which humans can flourish. This is also the goal of public health. The unification of public health and human rights workers around the globe would be a powerful force to improve the lives of everyone. Without, I think, being seduced into wishful thinking, it should be stressed that the Universal Declaration of Human Rights is a much more powerful document than it was in 1948 because both global interdependence and human equality are much better recognized today. Cynicism is understandable, but even our 2003 pre-emptive war on Iraq was often justified as a human rights war when weapons of mass destruction could not be found. Not only are human rights being taken more seriously by governments, but they are also increasingly a major driving force in private, non-governmental organizations (NGOs). Of course, there are different kinds of rights and more effective and less effective ways to enforce them. The new International Criminal Court can, for example, help to deter and punish those who engage in torture and genocide, but can do nothing to governments who fail to provide basic health care to their citizens. Moreover, to conclude that human rights is a more powerful language for good than medical ethics is not to conclude that medical ethics is irrelevant. On the contrary, medical ethics not only is necessary to make basic human rights a reality (e.g., by prohibiting physician involvement in torture and executions), but also can advance an anti-paternalistic public health agenda

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that supports public education and democracy in public health practice. It thus seems more fruitful to explore the ways in which bioethics and human rights can work together synergistically in preparing for and coping with epidemics than to ignore either of them.

BIOTERRORISM In the immediate aftermath of 9/11, it was easy for human rights advocates and civil libertarians to despair. Congress almost immediately passed the Orwellian-named USA Patriot Act, it had authorized an international (and 1984-like perpetual) global war on terror, and the Bush Administration had also announced that it would disregard not only the United Nations but also fundamental international human rights and humanitarian law as expressed in the Geneva Conventions. More recently, however, the tide seems to be turning. Many governmental actions are now met with considerable skepticism and even active resistance. The color-coded terrorist warning system has been all but abandoned as too vague to do any more than scare the public. A proposal to enlist mail carriers and TV repair persons as ‘‘tipsters’’ (the so-called ‘‘TIPS’’ program) has been abandoned. Duct tape and plastic sheeting remain punch lines in jokes about personal protection from chemical and biological agents. We continue to be bombarded with bioterrorism doomsday scenarios, although the major terrorist threats are not from biological agents. Rather they are from conventional weapons (e.g., firearms and bombs – including ‘‘dirty bombs,’’ conventional explosives containing radioactive material) delivered either in trucks on by individual suicide bombers, as evidenced by terrorist activities in Israel for decades, by insurgent attacks in Iraq, and by terrorists worldwide. These attacks create panic, but the most dangerous weapons are not chemical or biological, but nuclear. Our government knows this. Although there were many inconsistent rationales given for going to war with Iraq, no one suggested it was because they possessed chemical or biological weapons: we have known about these weapons for more than two decades, and Iraq has actually used their chemical weapons on both civilian and military targets. It was the future prospect of possessing nuclear weapons that ultimately moved us to war. Bioterrorism, nonetheless, continues to be hyped beyond all scientific or historic reality, even in the public health community which should know better. A leading public health lawyer, for example, has asserted that ‘‘a single gram of crystalline botulinum toxin, evenly dispersed and inhaled,

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could kill more than one million people’’ (Gostin, 2003). But, when looking at actual data, that same lawyer admits that in fact, when Aum Shinrikyo, the Japanese terrorist cult, actually ‘‘attempted to disperse aerosolized botulinum toxin both in Tokyo and at several military installations in Japan’’ the result was not millions dead, or even thousands or hundreds: rather all of these attacks ‘‘failed to kill anyone’’ (Gostin, 2003). Likewise, it has been asserted that the release of 100 kilograms of aerosolized anthrax over Washington, D.C. could kill up to three million people. The real anthrax attacks through the U.S. mails were highly effective in sowing terror in the populations, but resulted in only five deaths (the number killed in American hospitals by negligence every 30 minutes or on our nation’s highways every hour). The scariest scenario involves smallpox because, unlike botulinum or anthrax, smallpox can be transmitted from one person to another. This is why the Bush administration used the threat of a smallpox attack from Iraq as one reason for us to fear Iraq, and as the almost sole justification for its massive three-phase smallpox vaccination program. That now-abandoned program was a public policy and public relations disaster, vaccinating only about 4,000 of the initially proposed 500,000 health care workers the government planned to have vaccinated with the smallpox vaccine during phase one – phase two would have encompassed up to ten million first responders and public safety personnel, and phase three would have included all willing civilians (McNeil, 2003; Stevenson & Stolberg, 2002). Why? I think the major reason is that the administration failed to persuade physicians and nurses that the known risks of serious side effects with the vaccine were justified given the fact that there is no evidence that Iraq (or anyone else) has both smallpox virus and the wish to use it in a terrorist attack. The information provided on this issue to the physicians and nurses was in the same spirit as the Iraq nuclear threat information, except that it contained no facts at all, not even misleading or phony ones. The Director of the Centers for Disease Control (CDC), and the person in charge of the smallpox vaccination program, for example, told a U.S. Senate Appropriations Subcommittee on January 29, 2003, about a month after the smallpox vaccination campaign began: I can’t discuss all of the details because some of the information is, of course, classified. But I think our reading of the intelligence that we share with the intelligence community is that there is a real possibility of a smallpox attack from either nations that are likely to be harboring the virus or from individual entities, such as terrorist cells that could have access to the virus. So we know it’s not zero. And I think that’s really what we can say with absolute certainty: that there is not a zero risk of a smallpox attack.

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This is wonderful doubletalk that proves nothing except that the CDC Director does not know much about the risk of a smallpox attack. Most importantly, however, is that if the U.S. government knows that an individual, group, or nation has smallpox and is working to make it into a weapon, this information should be made public. It is the terrorists who want to keep their methods and intentions secret: the best defense from a potential target is to make this information public. Since most Americans probably know this, the failure of the administration to offer any evidence at all of anyone possessing weaponized smallpox meant it was highly probable that the administration had no such evidence. Thus, the real risks of the vaccine could not be offset by any measurable benefit. Few were surprised then when after the Iraq war, in August 2003, an Institute of Medicine panel recommended that smallpox vaccination for civilians be abandoned; and by the summer of 2004 the entire effort was abandoned (Calabresi & August, 2004). The bottom line is that the potential for biological terrorism is real (i.e., it is greater than zero), but it is very low. In almost any foreseeable attack the number of deaths from a bioterrorist attack is likely to be low (as evidenced in the only real biological attacks to date, in which between zero and five people died). Planning is reasonable; overreaction creates more problems than it solves – including predictable adverse reactions to the vaccinations themselves.

BIOTERRORISM AND EPIDEMICS But what about a ‘‘real’’ epidemic, such as a new, worldwide pandemic? A repeat of the 1918 flu epidemic is likely at some point, and could prove devastating. We can and should produce vaccines against the flu. Our new emphasis on bioterrorism, however, has actually drained public health resources away from this effective vaccine. As the World Health Organization warned in late 2004, we need much better planning, and international cooperation, to prepare for an influenza pandemic (World Health Organization, 2004). Instead we are diverting funds away from this traditional public health concern which involves tens of thousands of deaths a year in the U.S. alone, and a predictable worldwide pandemic at some point, trying to protect against an extremely unlikely bioterrorist attack. It is here that we can determine whether or not ‘‘dual use’’ is a reality or just a marketing slogan. I agree with those who say that public health infrastructure generally must be improved for the sake of the nation’s health. But where I disagree is on what effect bioterrorism preparation will actually have on public health infrastructure.

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I wrongly and naively (it turns out) expected the federal government to provide increased funding for public health in the wake of 9/11. There has been some funding for bioterrorism, but mostly public health departments have been struggling with more unfunded federal mandates and suggestions, and have had to actually divert funds from public health programs we know work to save lives and improve health, to bioterrorism preparation which has little or no public health payoff. My own state of Massachusetts, always a national leader in public health, has made major cuts in tobacco control, domestic violence prevention, and immunizations against pneumonia and hepatitis A and B. Public health dollars have shrunk 30 million dollars in two years, during which time Massachusetts has received $21 million for bioterrorism-related activities, some of which could be categorized as ‘‘dual-use.’’ Public health expert David Ozonoff of the Boston University School of Public Health accurately describes what is happening: ‘‘The whole bioterrorism initiative and what it’s doing to public health is a cancer, it’s hollowing out public health from within y This is a catastrophe for American public health’’ (Smith, 2003b). This was dramatically demonstrated nationally in the fall of 2004 when the U.S. experienced a shortage of flu vaccine and was forced to ration it to those Americans most at risk of death and hospitalization from the flu. Cartoonist Matt Davies caught the irony in his cartoon picturing a citizen coming to the door of the ‘‘Homeland Security Bio Terror Readiness Unit’’ only to be greeted by a note pinned to the door reading, ‘‘Out with the flu.’’ Other public health experts have put the weakening of public health in even most disturbing terms, noting ‘‘Worse, in response to bioterrorism preparedness, public health institutions are being reorganized along a military or police model that subverts the relationships between public health providers and the communities they serve’’ (Cohen, Gould, & Sidel, 2004). To the extent that these experts are correct, and I think they are, exaggerated fear of bioterrorism is resulting in overreaction that is already counterproductive in that it is harming both the public health service’s effectiveness and its relationship with the communities it serves. Exaggerated risks produce extreme responses that are based more on fear than facts, so it is not surprisingly that they have unintended consequences (Annas, 2006). Public health planning should be based on science not freefloating anxiety and fear. Instead of using the tools of public health, especially epidemiology to gather data and risk-assessment, to identify most likely risks and work on them, our government seems to have adopted the bizarre notion that all threats are equal and that all states and localities should equally prepare for all of them. This philosophy has produced two

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interrelated epidemics in the U.S. today: an epidemic of fear, and an epidemic of security screening.

HUMAN RIGHTS AND THE SARS EPIDEMIC The SARS epidemic was our first, and so far only, post-9/11 contagious disease epidemic, but it also returned us to late nineteenth century Ellis Island days in that its cause and mode of transmission were initially unknown, there is no diagnostic test for it, there is no vaccine, and there is no effective treatment. But SARS also appeared in a society equipped with instant global communication that made management of people through information much more important than management of people through police actions. With the internet information now spreads like a virus, but much faster. It is probably too early to reach firm conclusions about which containment methods were or were not the most effective in containing the disease. Nonetheless, since the epidemic has ended in all 30 countries in which suspected SARS cases were reported, and only a few countries used quarantine (detained individuals who showed no symptoms), it seems reasonable to conclude that quarantining ‘‘contacts’’ or even ‘‘close contacts’’ was unnecessarily harmful to those affected. Decisions about quarantine affect not only liberty but also the effectiveness of public health itself in the twentyfirst century. This is because, to be effective in preventing the spread of disease spread from either a new epidemic or a bioterrorist attack, public health officials must also prevent the spread of fear and panic. Maintenance of public trust is essential. When any new contagious disease appears, public health officials must answer three related questions: should contacts be quarantined? What test should be used to determine who qualifies as a ‘‘contact?’’ Should quarantine be voluntary or mandatory? China has been rightly criticized for failing to promptly alert the international community to the existence of a possibly new and contagious virus. Had information about the initial outbreak been properly shared, SARS might never have spread beyond China. Nonetheless when, with the active intervention of the World Health Organization, the epidemic was publicly recognized, China reacted vigorously, even harshly, especially in Beijing and Hong Kong. Mass quarantines were initiated involving two universities, four hospitals, seven construction sites, and other facilities, like apartment complexes. Sixty percent of the approximately 30,000 people quarantined in China were detained at centralized

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facilities; the rest were permitted to stay at home. Those quarantined were ‘‘close contacts,’’ defined as someone who has shared meals, utensils, place of residence, a hospital room, or a transportation vehicle with a probable SARS patient, or visited a SARS patient or been in contact with the secretions of a SARS patient anytime after 14 days before the SARS patient developed symptoms. Based on the evidence available, it seems reasonable to conclude that these mass quarantines in China had little or no effect on the epidemic. Moreover, the imposition of quarantine led to panic that could have spread the disease if identification of contacts was necessary to contain SARS. When a rumor spread that Beijing itself might be placed under martial law, China News Service reported that 245,000 migrant workers from impoverished Henan province fled the city to return home. Even in Hong Kong’s Amory Gardens, the site of the initial cluster of SARS cases in Hong Kong, when officials came to relocate residents to a quarantine facility they found no one at home in more than half of the complex’s 264 apartments (Chang, 2003; Hutzler, 2003). People were able to evade the police even though the police were working closely with public health officials. Canada had the only major outbreak of SARS outside of Asia, and it was limited to the Toronto area. Canada had about 440 probable or suspect SARS cases, resulting in 40 deaths, but many more lives were directly affected. Approximately 30,000 people were quarantined, although unlike China, almost all Canadians who were quarantined were confined to their own homes – and staying home, or ‘‘sheltering in place’’ seems to have become the new standard for isolating and protecting individuals in public health emergencies, at least in democracies. Canadian officials were generally levelheaded in their advice to the public, but seem to have overreacted on two occasions. In mid-April 2003, before Easter, Ontario health officials published full-page newspaper ads asking anyone who had even one symptom of SARS (severe headache, severe fatigue, muscle aches and pains, fever of 38 Celsius or higher, dry cough and shortness of breath) to stay home for a few days. Ontario’s health minister said, ‘‘This is a time when the needs of a community outweigh those of a single person’’ (Altman, 2003a, 2003b, 2003c). Again, in June, during the second wave of infections in Ontario, the health minister, responding to reports that some people were not completing their ten-day home quarantines, said ‘‘I don’t know how people will like this, but we can chain them to a bed if that’s what it takes’’ (BBC News, 2003). While the request may have arguably been reasonable, the threat was not. At a June 2003 WHO meeting on SARS, Health Canada’s senior director general, Paul Gully, noted that

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intra-hospital transmission was the ‘‘most important amplifier of SARS infections’’ and wondered aloud about the utility of the widespread home quarantines during the Canadian epidemic. His reasoning was that very few of those quarantined wound up exhibiting symptoms of SARS (Cohn, 2003a, 2003b). There were few cases of SARS in the U.S. and no deaths. The CDC worked with the World Health Organization and other countries to identify the SARS virus, and issued guidelines and recommendations in press conferences and on its website. Perhaps the most important involved travel. In this category the CDC issued both travel alerts (which consists of a notification of an outbreak of a specific disease in a geographic area and suggests ways to reduce the risk of infection and what to do if you become ill) and travel advisories (which include the same information, but further recommend against nonessential travel because the risk of disease transmission is considered too high). No attempt was ever made to prohibit Americans from traveling anywhere, although the federal government probably has the authority to do this for international travel (e.g., through passport limitations) should the risk of disease become extreme. Nor do there seem to have been any attempts in the U.S. by public health officials to quarantine asymptomatic contacts of SARS patients. The CDC also issued reasonable guidance to businesses with employees returning from areas affected with SARS, recommending that while in areas with SARS those ‘‘with fever or respiratory symptoms should not travel and should seek medical attention’’ and upon return asymptomatic travelers ‘‘should be vigilant for fever and respiratory symptoms over the 10 days after departure.’’ Most important, the CDC noted that ‘‘those persons need not limit their activities and should not be excluded from work, meetings, or other public areas, unless fever or respiratory symptoms develop.’’ In bold letters on its guidelines it underlined the point: ‘‘At this time, CDC is not recommending quarantine of persons returning from areas with SARS.’’ The president did, nonetheless, add SARS to the outdated federal list of ‘‘quarantinable communicable diseases’’ on April 4, 2003, and customs and immigration officials were given the authority to detain those entering the U.S. who were suspected of having SARS. This authority was not exercised. Of course, the public can overreact on its own, and in some cases clearly did – as restaurants in Chinatowns in New York and Boston were virtually empty for a time. The worst offenders were not the uninformed public, however, but academic institutions, some of which forbade their faculty and students to travel to areas that had SARS cases, or required them to spend ten days after they returned in self-imposed quarantine and obtain a

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physician’s certificate that they did not have SARS before returning to campus. Academic institutions with similar policies included both Harvard and Boston University, even though the Boston Public Health Commission had reasonably advised on April 9, 2003: At this point there is no evidence to suggest that a person without symptoms may infect others with SARS. In the absence of fever or respiratory symptoms, anyone who has traveled to high-risk areas or has been exposed to SARS patients may continue normal activities – isolation or quarantine is not recommended. Persons should not be excluded from school or work.

Anita Barry, director of communicable disease control at the Boston Public Health Commission had warned only four days earlier: ‘‘The biggest challenge for now with SARS is fear and rumor and panic’’ (Smith, 2003a). As a general matter, local public health officials acted very responsibly, even under extreme pressure. Although there were no quarantines in the U.S., there were cases in which isolation of symptomatic individuals was advised or mandated by local public health departments. In New York, 27 people were advised by the city health department to stay home for a period of ten days after their SARS fever had returned to normal. In addition, two individuals in New York City and one in Dallas were ordered to be isolated in hospitals because it was suspected they had SARS. The first of these was a young student on a tour around the world. He sought medical care in a New York City hospital and was diagnosed as a suspect case. He would have been quarantined at home, but had none, so he was ordered by the Department to remain in the hospital for ten days after his fever abated, and an unarmed security guard was posted at his door to enforce the order. He was offered an attorney to advise him about fighting the order, but refused. Ten days after the resolution of his fever he left town and has not been heard of since. The second case involved a person who was voluntarily in the hospital, but who became restless and wanted to leave before the ten days was up. He was ordered to stay, and put under guard as well (Altman, 2003b). The third case, from Dallas, also sought care in a hospital and was diagnosed as a suspect case. He gave a false address. The Dallas County Department of Health and Human Services sought and obtained a court order requiring him to remain in the hospital for ten days. At the hearing all in attendance (including the judge) ‘‘were provided with protective gear to wear to avoid any possible exposure to the disease while in the presence of the patient’’ (Dallas County Department of Health and Human Services, 2003). This alone made it virtually certain that the judge would find the patient a potential danger to the public and order continued isolation, which he did.

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In the midst of the SARS epidemic, New York City did, however, change its health code to permit the city’s health commissioner to order the quarantine of individuals who ‘‘may’’ endanger the public health because of smallpox, pneumonic plague, or other severe communicable disease. In addition, a contact may also be quarantined: someone who ‘‘has been or may have been’’ in ‘‘close, prolonged, or repeated association with a case or carrier.’’ This change in the code from permitting the quarantine of people who actually pose a danger to the public health and who have actually been in close contact with infected individuals, to those who ‘‘may’’ pose a danger and those who ‘‘may’’ have been in close contact with them is breathtaking in its invitation to arbitrariness. Given this, it is disturbing that not one person showed up to testify at the April 28, 2003 public hearing on this change. In the case of SARS, for example, which the revised rules specifically reference in a section on ‘‘post-publication changes,’’ the new regulation would have permitted the department to quarantine New York’s entire Chinatown area since all residents there ‘‘may’’ have been in contact with someone who ‘‘may’’ have SARS. No one (thankfully) seems to have even suggested such a rerun of the totally arbitrary San Francisco Chinatown quarantine, allegedly for plague. Nonetheless, it is worth noting that even nineteenth century U.S. courts, while granting extremely broad powers to public health agencies, condemned the arbitrary use of quarantine, even for smallpox, requiring public health officials to show ‘‘facts which warranted isolation’’ (Department of Health and Mental Hygiene, Board of Health, 2003). SARS may return, but the CDC is to be commended for providing the U.S. with a credible and open official (the CDC director, Julie Gerberding, herself) who informed Americans about what they could voluntarily do to avoid contracting or spreading the disease. Nationally, encouragement of sensible voluntary responses became policy, and no state invoked any emergency powers, including quarantine, in response to SARS. As a general rule, sick people seek treatment and accept isolation to obtain it – people do not want to infect others, especially their family members, and will voluntarily follow reasonable public health advice to avoid spreading disease. SARS emphasizes that effective public health today must rely on actions taken at the national and international level, and that public health should be seen primarily as a global issue. Virtually, every country in the world had to take some action to limit the exposure of its people to the disease. SARS was a major public health challenge, but it is no less a medical challenge. At the beginning of the twenty-first century, sick people seek medical care. Individuals believed to be infected with the disease were (and

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continue to be) cared for one-by-one by physicians and nurses in hospitals. In fact, one of the salient aspects of the SARS epidemic is that many (in some countries, most) infections were actually acquired in hospitals, and many of those infected, and some who died, were physicians and nurses who cared for the patients. The dedication of the physicians and nurses who treated SARS patients was exemplary. Neither public health nor medicine alone could have effectively dealt with SARS. The old distinctions between medicine and public health are blurring, and perhaps the most important message is that public health and medicine must work together to be effective (Mariner, 2003). Of course, SARS is not HIV/AIDS, which is not smallpox, which is not plague or tuberculosis, or bioterrorism. Each infectious disease is different, and epidemiology provides the key to any effective public health and medical response to a new disease. The rapid exchange of information, made possible by the Internet and an interconnected group of laboratories around the world (set up primarily for influenza identification and tracking), were critical to combating fear with knowledge. Information really does travel faster than even a new virus, and managing information is the most important task of modern public health officials. People around the world, provided with truthful, reasonable information by public health officials who are interested in both their health and human rights will follow their advice. Isolating sick people seems to have been critical to containing SARS, but better infection-control techniques in hospitals, and adherence to them, are equally necessary. Quarantining contacts, where it was attempted, seems to have been both ineffective (in that many, if not most, contacts eluded quarantine) and useless (in that almost none of those quarantined developed SARS). Mass quarantine is a relic of the past that seems to have outlived its usefulness. Attempts at mass quarantine, as evidenced by the experience in China, are now likely to create more harm than they prevent. They do this both by imposing unnecessary restrictions on liberty on those quarantined, and by encouraging potentially infected people to flee from public health officials. In the midst of concern over bioterrorism, but after the SARS epidemic, the New York Academy of Medicine did a survey of the American public asking how they would respond to two types of terrorist attacks: smallpox and a dirty bomb. Published in September 2004, the surveys results support two lessons that were apparent on 9/11: (1) the primary concern Americans have in a crisis is the safety of their family members; and (2) the most important predictor of whether they will follow the advice of public officials

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is if they trust them to be telling the truth and to be guided by their welfare. Specifically, the survey found that only 40% of Americans would go to a vaccination site in a smallpox outbreak if told to do so, and only 60% would shelter in place for as long as they were told to in the event of a dirty bomb explosion. The reasons given for not following advice are instructive. In the smallpox scenario, 60% had worries about the safety of the vaccine itself – twice as many as those who worried about actually getting smallpox. The respondents also suggested ways to make them more likely to cooperate. For smallpox, overwhelming majorities (94% and 88%) wanted to speak with someone who knew a lot about smallpox and who they trusted to want what was best for them. A physician not working for the government would fit the bill. In the dirty bomb case, the primary concern respondents had was the safety of their family members. 75% of those who would not shelter in place said they would do so if they could communicate with people they care about or if they knew they were safe. Overall the study concluded that ‘‘people are more likely to follow official instructions when they have a lot of trust in what officials tell them to do and are confident that their community is prepared to meet their needs if a terrorist attack occurs’’ (Lasker, 2004). These survey results are consistent with past bioterrorist exercises as well. As Senator Sam Nunn, who played the part of the president in the smallpox exercise, Dark Winter, in which mass quarantine failed: ‘‘There is no force on earth that can make Americans do something that they do not believe is in their own best interests and that of their families.’’ Given the data from real world events, public opinion surveys, and mock exercises, it is quite remarkable that some public health officials are still at home with draconian nineteenth-century quarantine and compulsory treatment methods. This is likely because public health officials, who believe all their actions are designed to protect the public, are much more concerned with false positives (failing to treat or detain someone who actually has a communicable disease) than with false negatives (detaining someone who actually does not have a communicable disease). They believe that brute force can effectively control the behavior of Americans in an epidemic or bioterrorist attack. To the extent this faith in coercion remains alive in the public health community, it is predictable that public health officials with the power to arbitrarily quarantine large numbers of people in an emergency will use it immediately, whether it is warranted or not. From their perspective, protecting public health is more important than protecting liberty, and as public health officials they may really believe they have nothing to lose. But abuse of power will predictably destroy public trust and instill panic.

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Even totalitarian dictatorships like China cannot control their populations in epidemics by fear alone in the twenty-first century. It cannot be emphasized enough that the primary goal and purpose of public health is prevention of disease in the first place. In the case of bioterrorism, this means prevention of the attack is much more important (to public health) than responding to it after the fact. Contemporary public health prevention of epidemics and bioterrorism is not primarily a local or state issue at all. It is fundamentally a global security issue that must be dealt with by the community of nations working together. National laws and treaties, with realistic inspection and sanctions, devoted to preventing the development and production of biological weapons are the most important tool in the prevention of bioterrorism. We are also right to want to modernize the World Health Organization’s International Health Regulations: but, as WHO recognizes, to be effective revised regulations must be founded on respecting and protecting human rights, not trampling them. State laws, no matter what they say, and no matter what the CDC says, simply cannot prevent or control bioterrorism. Moreover, by seeming to grant unconstitutional power over citizens’ lives and liberty, bad state public health emergency laws undermine public trust and are thus a danger to public health itself. Florida’s crude summary of CDC’s-sponsored ‘‘model act’’ which seeks to trade off human rights for safety and security, provides the country’s starkest example, and thus helps illustrate why honoring rather than destroying human rights is essential to effective public health action in the twenty-first century.

FLORIDA’S PUBLIC HEALTH EMERGENCY STATUTE There has been an epidemic of new state laws addressing public health powers in the event of a bioterrorist attack or epidemic since 9/11. Florida’s is by far the most extreme. Perhaps because it was the site of the first anthrax letter attack, Florida was fertile grounds for all sorts on so-called anti-terrorist legislation. Within a year of September 11, the Florida legislature passed, and Governor John Ellis ‘‘Jeb’’ Bush signed, 21 bills related to terrorism. One of these 21 bills, Bill 2002-269, was based at least in part on the CDC-sponsored model, adopting the scheme of declaring a public health emergency to trigger additional government powers, and vesting this power in the state’s ‘‘health officer.’’ The state officer’s emergency powers are in four categories: (1) the shipment of drugs in the state; (2) the provision of bulk drugs by pharmacists;

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(3) the temporary licensing of certain health care practitioners; and (4) power over individuals (Laws of Florida, 2003, Chapter 2002-269). There are major problems with all of the provisions (especially the extraordinarily broad definition of ‘‘public health emergency’’ which, for example, would include the annual flu epidemics and HIV disease), but Section 2, Sub-section 4, on the power over individuals, is so out of step with anything else in the rest of the country, and so inconsistent with basic human rights and constitutional law, that it warrants scrutiny. The operative section gives the State Health Officer the following power over individuals in a public health emergency: 4. Ordering an individual to be examined, tested, vaccinated, treated, or quarantined for communicable diseases that have significant morbidity or mortality and present a severe danger to public health. Individuals who are unable or unwilling to be examined, tested, vaccinated, or treated for reasons of health, religion, or conscience may be subjected to quarantine. a. Examination, testing, vaccination, or treatment may be performed by any qualified person authorized by the State Health Officer. b. If the individual poses a danger to the public health, the State Health Officer may subject the individual to quarantine. If there is no practical method to quarantine the individual, the State Health Officer may use any means necessary to treat the individual. Any order of the State Health Officer given to effectuate this paragraph shall be immediately enforceable by a law enforcement officer y (Laws of Florida, Chapter 2002-269. Section 2.4)

This section of the Florida law can be usefully contrasted to a Minnesota law on the same subject, which rather than trading off civil liberties for security, takes a human rights and health approach. Specifically, the Minnesota law provides: ‘‘individuals have a fundamental right to refuse medical treatment, testing, physical or mental examination, vaccination, participation in experimental procedures and protocols, collection of specimens and preventative programs’’ even in a public health emergency (Minnesota Statute Sec 12.39, 2003). All four parts of the Florida law are extreme, and each shows how public health can drastically overreact to a perceived threat in ways that are counterproductive to public health and devastating to human rights. The first part, relating the ‘‘ordering an individual to be examined y’’ makes no public health sense at all, because there is no characteristic of the individual that gives rise to any suspicion or reason to believe that the individual either has the disease in question or has been exposed to the disease. Instead, the mere presence of a disease in Florida that the state health officer designates as creating a ‘‘public health emergency’’ authorizes anyone designated as ‘‘qualified’’ by the state health officer to order anyone to be ‘‘examined,

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tested, vaccinated, treated, or quarantined.’’ Mere refusal results in quarantine, without any evidence even of exposure to disease, let alone that the person is a threat to others. This is not public health, but authorization for a public health police state. This police-suspect model is the core mistake of the entire approach: Americans (Floridians) are not the enemy in a bioterrorist attack, and to prearrange a response that has the police seek out, confine, and forcibly inject innocent Floridians makes no scientific or public health sense. The enemy is the bioterrorist – although neither current law, nor this Florida statute, would permit police to do the things to a suspected bioterrorist it authorizes police to do to innocent Floridians. This law not only misses the target, in shots in the wrong direction altogether. But the third part, 4(b), is the most extreme and offensive and it is difficult to believe that anyone in the legislature actually read it. The first sentence makes perfect sense, and summarizes the law in virtually every state: ‘‘If the individual poses a danger to the public health, the State Health Officer may subject the individual to quarantine,’’ at least so long as the phrase ‘‘provided this is the least restrictive alternative available’’ is understood. But the second sentence has no legal pedigree at all (at least outside of totalitarian states): ‘‘If there is no practical method to quarantine the individual, the State Health Officer may use any means to vaccinate or treat the individual.’’ This could be labeled the ‘‘torture exception.’’ If the risk is big enough to society, we can torture bioterrorists (and their victims!). But governments cannot engage in torture (or slavery or murder) under any circumstances under applicable international human rights treaties, even where the very survival of their country is at risk. Article 7 of the International Covenant on Civil and Political Rights is unambiguous: ‘‘No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation.’’ And Article 7 is one of the articles from which no derogation is permitted, even ‘‘in time of a public emergency which threatens the life of the nation’’ (United Nations, 1976). Because this section authorizes the violation of international law prohibition on torture, it is shocking to see it as part of a public health law (Annas, 2005). For almost all potential bioterrorist agents there is neither a vaccine nor an effective treatment; and even for garden variety new epidemics that could qualify as public health emergencies under the statute, like SARS, no approved treatment exists. So, what can this provision possibly mean? That the state health officer can compel the use of potentially dangerous experimental drugs? But this is a fundamental violation not only of international law, but also of basic U.S. constitutional law, and U.S. federal drug law. No state

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law can, of course, overturn any, let alone all, of these higher laws. Even assuming that there is an approved vaccine that could also serve as a treatment if delivered to an exposed person quickly (the smallpox vaccine seems to have been what whoever drafted this language was likely thinking about), what justification can there be for forcing the vaccination ‘‘by any means?’’ The state gives only one, ‘‘if there is no practical method to quarantine the individual.’’ But the entire statute is based on the premise that state public health officials know how to respond to a public health emergency, and should have the power to quarantine if needed. This provision undercuts the assumption that state public health officials have done any planning at all, and instead assumes that the state will not be able to even provide quarantine facilities where needed – although it can also be read more cynically, to say the state need not provide quarantine for vaccination refusers but can simply force vaccination on everyone. Either way, there is no constitutional or human rights justification for forced treatment. Americans have a constitutional right to refuse any medical treatment, even lifesaving treatment. It is also a fundamental principle of medical ethics that patients have the right to informed choice, and the right to refuse any medical intervention. An emergency may justify very short periods of confinement of individuals who public health officials believe pose a risk to others, but nothing justifies this type of ‘‘treatment.’’ Perhaps the only good news about the Florida statute is that even in the wake of 9/11 and the drumbeat of the threat of a possible smallpox attack, no other state has passed anything like this statute. The Florida legislature should be ashamed of itself.

TERRORISM AND TORTURE My use of the word ‘‘torture’’ in the context of public health emergencies may strike readers as extreme. In the post-9/11 context, however, Florida’s public health law can be seen as consistent with Bush administration antiterror policy, that has condoned torture in other contexts, and that has only been subject to serious court reviews in 2004. So far most American courts have, rightly I think, insisted that U.S. constitutional rights, and international human rights, must be respected, even when dealing with a suspected terrorist. In the wake of the September 11, the White House legal counsel argued that the Geneva Conventions (which prohibit not only torture, but all inhumane and degrading treatment) do not apply in the war on terror, with specific application to the prisoners held at Guantanamo; and Justice

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Department lawyers went even further, arguing that the President as Commander-in-Chief had the authority to order torture of prisoners, and that obeying such an order would be a valid defense to a war crime or crime against humanity charge. In the language of the memorandum, the criminal anti-torture statute ‘‘does not apply to the President’s detention and interrogation of enemy combatants pursuant to his Commander-in-Chief authority’’ (Gonzales, 2002). The road to the Abu Ghraib torture scandal began when the president decided in February 2002 that the Geneva Conventions would not apply to ‘‘enemy combatants’’ jailed in Guantanamo. This decision was made over the strong objections of the Secretary of State, Colin Powell, and without any meaningful input from the career lawyers in the armed forces, all of whom objected to jettisoning the Geneva Conventions, a treaty we had honored for more than 50 years. The reason given for taking prisoners to Guantanamo was that the global war on terror was a ‘‘new kind of war’’ that made the Geneva Conventions inapplicable, and that Guantanamo could and should be used as an interrogation center outside the jurisdiction and thus the oversight of the U.S. courts. The rationale was that if neither the U.S. Constitution nor international law applied in Guantanamo, the administration could write its own rules of conduct for the prison, and it did. Secretary of Defense Donald Rumsfeld, for example, specifically approved types of torture that could be used in the interrogations there, and specifically involved physicians in it by requiring that prisoners obtain ‘‘medical clearance’’ prior to having these techniques applied to them. In the words of his directive, the new techniques can only be used after, among other things, the detainee is medically and operationally evaluated as suitable (considering all techniques to be used in combination). Although these torture techniques were only approved for Guantanamo, they ultimately made their way to Abu Ghraib. The Geneva Conventions were to apply in Iraq, according to the administration. Had they been followed, the torture and abuse of prisoners at Abu Ghraib would not have occurred. Had the physician and nurse military officers at Abu Ghraib been more knowledgeable about the Conventions, and more confident about their roles as both healers and officers, it is also likely that the abuses would have been halted much sooner than they were. Not only do the conventions prohibit torture and abusive and humiliating treatment of prisoners of war, they also specifically protect physicians who follow medical ethics. In the early summer of 2004, the U.S. Supreme Court ruled that prisoners at Guantanamo could bring habeas corpus actions in U.S. courts (BBC

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News Online, 2004). It thus rejected the position of the Bush administration, as stated in oral argument before the Ninth Circuit, that even if the U.S. was engaged in ‘‘murder and torture’’ at Guantanamo, U.S. courts could not interfere. In another case decided that same day, the U.S. Supreme Court ruled that a U.S. citizen captured on the battlefield, and originally held at Guantanamo, had a right to a fair hearing under the U.S. Constitution to contest his status as an ‘‘enemy combatant’’ (Hamadi v Rumsfeld, 542 US 507, 519, 2004). The prisoner who brought this case, Yaser Esam Hamadi, has since been released without charges ever having been filed against him. Although it did not have to rely on it for its conclusion, in its opinion the U.S. Supreme Court cited provisions of the Geneva Convention III (relative to prisoners of war) as authoritative on the ‘‘law of war.’’ In June 2006, in a flat rejection of the Bush administration’s position, the U.S. Supreme Court ruled that the Geneva Conventions must be followed at Guantanamo (Hamden v. Rumsfeld, 548 U.S. 2006). It is important for U.S. courts to continue to recognize international law as our own, and to provide even non-U.S. citizens with a judicial remedy for extreme unlawful acts such as torture and murder. Thus, prisoners at Abu Ghraib and Guantanamo who were tortured can sue their torturers in U.S. courts for money damages. Compensation is important to victims, as is having their day in court. Of course, torture and abuse of prisoners is also a crime, and the perpetrators can be prosecuted – as some of the soldiers involved in the abuses at Abu Ghraib have been. Most important, however, is prevention. Torture, like terrorism, remains widely practiced around the world, even though universally condemned. Amnesty International, for example, estimates that 150 countries may condone torture. Physicians, unlike the Red Cross, are present in almost every prison in the world; and because torturers often rely on physicians to help them, physicians are in a unique position to prevent torture (Miles, 2006). Under international medical ethics, international law, including the Geneva Conventions, and U.S. military doctrine, and no other profession has the moral and societal warrant to be effective in torture prevention. Lawyers also have special obligations to help protect physicians – because of their role in upholding the rule of law, including international humanitarian law. The challenges of the war on terror present an opportunity for medical and legal professional organizations to work together trans-nationally to up hold both medical ethics and international humanitarian law (Annas, 2005). Federal policies that violate international human rights and humanitarian law are both illegal and immoral. I think the same can be said for the states that have adopted provisions that make public health officials immune from lawsuits for any action taken during a public health emergency that injures

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members of the public – even for forced ‘‘treatment’’ amounting to torture. Immunity encourages unlawful and arbitrary action, neither of which have any place in public health or medicine.

CONCLUSION At the outset of the twenty-first-century bioterrorism, although only one threat to public health, can be the catalyst to effectively federalize and integrate much of what is now uncoordinated and piecemeal state and local public health programs. This should include a renewed effort for national health insurance, national licensure for physicians, nurses, and allied health professionals, and national patient safety standards. Federal public health leadership will also encourage us to look outward, and to recognize that prevention of future bioterrorist attacks and even ordinary epidemics will require international cooperation. As the SARS epidemic illustrates, it is time not only to federalize public health, but to globalize it as well. Universal human rights is the proper foundation for a new global public health ethics. Our new kind of war against bioterrorism should be built on a goal of protecting liberty, not depriving Americans of it. There is a knee jerk tendency in times of war and national emergencies to restrict civil liberties as the most effective way to counteract the threat. But history has taught us that such restrictions are almost always useless and often counterproductive, and we usually wind up with deep regrets for our action. The tendency to return to the days before liberty and informed consent were taken seriously has been evident both in the immediate aftermath of 9/1l. Arbitrary and unlawful responses have not, however, helped make Americans safer or more secure, instead they threaten the very liberties that make our country worth protecting. America is strong because its people are free, and to be both moral and effective public planning for war and public health emergencies must be based on respecting freedom and trusting our fellow citizens. The United States should lead the world in proclaiming a new, global public health, based on transparency, trust, and science, and most importantly, based on respect for human rights. We do not need a new Statue of Security: the Statue of Liberty is just fine.

REFERENCES Altman, L. K. (2003a). Fearing SARS, Ontario urges wider quarantines. New York Times, April 18, Al.

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Altman, L. K. (2003b). Public health fears cause New York officials to detain foreign tourist. New York Times, April 28, A5. Annas, G. J. (2005). Unspeakably Cruel: Torture, medical ethics and the law. New England Journal of Medicine, 352, 2127–2132. Annas, G. J. (2006). Bioterror and Bioart: A plague o’ both your houses. New England Journal of Medicine, 354, 2715–2720. BBC News. (2003). ‘‘Bed Chains’’ for Canada SARS violators. BBC News, June 1. BBC News Online. (2004). U.S. Supreme Court Guantanamo Ruling. July 8. http://news.bbc. co.uk/2/hi/americas/3867067.stm Calabresi, M., & August, M. (2004). Was smallpox overhyped? Time, July 26, 16 Chang, L. (2003). In the face of SARS, Beijing reverts to a quite village, Wall Street Journal, May 12, A1. Cohen, H. W., Gould, R. M., & Sidel, V. W. (2004). The pitfalls of bioterrorism preparedness: The anthrax and smallpox experiences. American Journal of Public Health, 94, 1667–1671. Cohn, M. R. (2003a). Nations must stay on SARS alert: WHO. Hamilton Spectator (Ontario, Canada), June 18, D1. Cohn, M. R. (2003b). Personal communication, July 16. Dallas County Department of Health and Human Services. (2003). CDC says possible SARS patient test results are negative for SARS. Press Release, July 14. Department of Health and Mental Hygiene, Board of Health. (2003). Notice of adoption of amendments to Sections 11.01 and 11.55 of the New York City Health Code. http:// www.nyc.gov/html/doh/downloads/pdf/public/notice-adoption.pdf Accessed 3/30/06. Garrett, L. (1994). The coming plague: Newly emerging diseases in a world out of balance. New York: Farrar, Straus and Giroux. Gonzales. A. R. (2002). Memorandum for the President from Alberto R. Gonzales. Decision re application of the Geneva Convention on prisoners of war to the conflict with Al Qaeda and the Taliban, Jan. 25. http://www.hereinreality.com/alberto_gonzales_torture_ memo.html Accessed 3/30/06. Gostin, L. (2003). When terrorism threatens health: How far are limitations on personal and economic liberties justified. Florida Law Review, 55, 1105–1169. Hamadi v. Rumsfeld, 542 US 507, 519. (2004). Hamden v. Rumsfeld, 548 U.S. (2006). Hutzler, C. (2003). China reverts to top-down rule with heavy hand to fight SARS. Wall Street Journal, May 8, Al. Lasker, R. D. (2004). Redefining readiness: Terrorism planning through the eyes of the public. New York: Center for Advanced Collaborative Strategies in Health, New York Academy of Medicine. http://www.healthprivacy.org/usr_doc/RedefiningReadinessStudy.pdf Accessed 3/30/06. Laws of Florida. (2003). Chapter 2002-269. Health Emergency Act. http://election.dos.state. fl.us/laws/02laws/ch_2002-269.pdf Accessed 3/30/06. Mann, J., Gruskin, S., Grodin, M., & Annas, G. (1999). Health and human rights: A reader. New York: Routledge. Markel, H. (2004). When germs travel: Six major epidemics that have invaded America since 1900 and the fears they have unleashed. New York: Pantheon Books. Mariner, W. K. (2003). Public health and law: Past and future visions. Journal of Health Politics, Policy and Law, 28, 525, 550.

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McNeil, D. (2003). After the war: Biological defenses: Two programs to vaccinate for smallpox come to a halt. New York Times, (June 19), A13. Miles, S. H. (2006). Oath betrayed: Torture, medical complicity, and the war on terror. New York: Random House. Minnesota Statute Sec. 12.39. (2003). 2002 Minnesota Chapter Law 402. Smith, S. (2003a). US allows for SARS quarantines. Boston Globe, April 5, A2. Smith, S. (2003b). Anthrax vs. the flu: As state governments slash their public health budgets, federal money is pouring in for bioterror preparedness. Boston Globe, July 29, C1, C4. Steiner, H. (1998). Securing human rights. Harvard Magazine, Sept–Oct., 45–46. Stevenson, R., & Stolberg, S. (2002). Bush lays out plan on smallpox shots: Military is first. N.Y. Times, Dec. 14, 1A. United Nations. (1976). International covenant on civil and political rights. http://www. unhchr.ch/html/menu3/b/a_ccpr.htm Accessed 3/30/06. World Health Organization. (2004). Consultation on priority public health interventions before and during an influenza pandemic. http://www.who.int/csr/disease/avian_influenza/ consultation/en/ Accessed 3/30/06.

CHAPTER 2 QUARANTINE AND CIVIL LIBERTIES Paul J. Edelson 1. QUARANTINE IN A FREE SOCIETY With the recent outbreak of Severe Acute Respiratory Syndrome (SARS) and on-going concerns about influenza and the use of pathogenic organisms as weapons, the management of outbreaks of contagious diseases has recently taken on a new urgency (Barbera et al., 2001). However, the public health law concerning disease outbreaks is still based on the perspectives, and often the words, of the early twentieth century, when most public officials saw little option but to take a very authoritarian approach to the protection of the public’s health. Over the past 40 years, the jurisprudence of involuntary non-criminal incarceration, for example for the treatment of tuberculosis or as a result of mental disease, has changed dramatically, as basic concepts of due process have been incorporated into the process of civil commitment (Gostin, Burris, & Lazzarini, 1999). There is, therefore, a pressing need to rethink the approaches traditionally taken to the control of infectious disease outbreaks to address this gap between the old assumptions of plenary power to act in the public’s interests and the rights of individuals threatened with state actions (Davis & Kumar, 2003). It is a canard sometimes used to justify authoritarian actions that the public responds to emergencies by losing control and panicking; indeed it is the consensus of social scientists that people in emergency situations tend to be more cooperative Ethics and Epidemics Advances in Bioethics, Volume 9, 29–42 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09002-9

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and more generous toward others than they may normally be (Smith, 2001; Clarke, 2002). If anything, it is my reading of such experiences as the bomb attacks on London during World War II (Harrisson, 1989) that it is the poorly prepared and under-supported public officials who are most likely to act in unproductive and socially divisive ways during public emergencies. An American example of how misdirected and incompetent quarantine measures can be is the quarantine imposed on Chinese and Japanese residents of San Francisco during the outbreak of plague in that city in 1900 (Risse, 1992; Edelson, 2003). Supported by such pseudoscientific notions as that persons whose diet was based on rice comprised ‘‘races liable to the plague’’, the federal government issued an order forbidding the travel of Asians on public transportation out of the city. Remarkably in this case the Federal district court found the order a clear violation of the equal protection guarantees of the Fourteenth Amendment and struck it down (McClain, 1988). But far more often, courts have accepted uncritically the claims of scientific necessity to justify intrusions on personal liberties in connection with disease outbreaks. One of the reasons for this, perhaps, is that public health decisions have been understood to be based on objective scientific facts which directly imply a particular strategy for control. In fact, even when the science is well understood, there may be a variety of strategic implications among which policy choices must be made which are not determined by scientific necessity and which should be subject to careful review by the courts. This is particularly true in dealing with an apparently new infectious agent, where such key epidemiologic information as the route of transmission, the transmissibility of the agent, the incubation period and the period of infectiousness are all likely to be unknown, and where evidence may be sparse or conflicting (Wenzel & Edmond, 2003a). Efforts at infection control may require the benefit of the doubt when first undertaken, but should be flexible enough so that they can be refocused quickly in response to evolving scientific knowledge. Perhaps it is helpful to begin with some conventional wisdom about the use of quarantines which recent experience with SARS outbreaks has put to the test. It has traditionally been considered that involuntary quarantine is the principal tool to control rapidly spreading disease outbreaks. Of course, the use of vaccines, as with smallpox introductions in the 1940s (Weinstein, 1947) or, more recently, measles outbreaks among displaced persons (UN Office for the Coordination of Humanitarian Affairs, 2003), or of prophylactic antibiotics have been highly effective in specific settings. But, particularly where the agent is unknown, or is not susceptible to antibiotics or antivirals, both of which were true at the onset of the SARS outbreak,

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quarantine is often considered to be the only responsible action to protect the public’s health, and plans for dealing with bioterrorism attacks or natural outbreaks of disease include provisions for quarantine (Centers for Disease Control and Prevention, 2004a, 2004b; WHO, 2004). However, modern analyses raise important questions about the effectiveness of quarantine in past outbreaks (Oregon Department of Human Services, 2002), the value of quarantine and similar widespread approaches to infection control in the SARS outbreaks (Bell, 2004) or their likely benefits in future events (Lloyd-Smith, Galvani, & Getz, 2003). Lloyd-Smith and his colleagues emphasize the need to consider quarantine within the very specific conditions of the particular outbreak involved, the details of the quarantine plan, and the stage of the outbreak which has been reached at the time quarantine is being considered. For example, the utility of quarantine in a smallpox outbreak is limited by its relatively long, two-week incubation period, meaning that many infected persons who are not yet symptomatic could have moved away from their site of exposure before their symptoms appear. Second- and third-generation cases could then appear far from the site of the original epidemic focus, potentially exposing a great many persons who would not be located within a specific population or geographic area and making it impossible to identify a reasonable group of people for quarantine. During the recent SARS outbreak, several countries established strict quarantine regimens for persons who were in the general vicinity of SARS cases – including not only household members, visitors, or co-workers, but even people using the same trolley or bus as a person with SARS (Centers for Disease Control and Prevention, 2003a). In China, about 30,000 residents of Beijing were quarantined either at their homes or at congregate quarantine facilities for a median of 14 days as a result of such regulations. A recent survey of one district showed that about 2.3% of quarantinees developed SARS, suggesting that about 44 persons were held in quarantine for each person who eventually became ill. Thus, the efficiency of quarantine was extremely low. Similar data from Taiwan (Centers for Disease Control and Prevention, 2003b) are consistent with this conclusion. Of the 131,132 persons quarantined, 133 eventually developed SARS, or about 1 in 1000. Yet, despite these extensive uses of quarantine, the outbreaks continued to grow in both Beijing and Taiwan, suggesting that quarantine had little impact on the dynamics of disease spread. It should be pointed out that a study of the Hong Kong experience concluded that restriction of interpersonal contact did play an important role in controlling the outbreak (Riley et al., 2003). However, the study did not allow a clear distinction to be made

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between the contribution of isolation, restricting access to persons already symptomatic, and quarantine, or restrictions on well persons who are thought to be at risk for developing the disease. In fact, control efforts in many countries went beyond efforts to quarantine ‘contacts’ as broadly defined, and included efforts to restrict the movement of all persons with fever by screening travelers at airports, checking the temperatures of people visiting hospitals or public buildings, or even by screening the general public at ‘‘fever stations’’ established on busy city streets. Persons found to be febrile might be restricted to their own homes for more intensive surveillance, or be placed into quarantine. These efforts, too, appear to have had very limited effect on controlling the epidemic (Bell et al., 2004). Of 14 million travelers screened in China, only 12 cases of SARS were identified, or about 1 case per million. These 12 cases represented 0.4% of all SARS cases in China. Indeed, some clusters of cases were traced back to contact among persons waiting to be screened at the street corner ‘fever stations’. Thus, on balance, it is not clear whether such interventions may have increased rather than diminished disease transmission. The key to controlling SARS, as subsequent experience taught us, was the control of hospital transmission from ill patients (Wenzel & Edmond, 2003b; Svoboda et al., 2004). As asymptomatic contacts appear to be noninfectious and infectiousness presumably increases with increasing viral loads as the disease progresses (Peiris et al., 2003), in retrospect quarantine may not have accomplished more than shortening the time between the onset of symptoms and the institution of hospital isolation. A second perspective to bring to the issue of quarantine is to ask what factors make it difficult to maintain quarantine, of an individual or a group, when it is necessary. One clear issue is the reluctance of people to be separated from their loved ones during a period of crisis. Separation of children from parents or of husbands from wives was a continuing theme in immigrant community newspapers’ criticism of quarantine procedures in the early twentieth century (Markel, 1997), and continues to be an important factor in the preference for home quarantine whenever possible. Another important issue, discussed both by commentators on the SARS outbreak in Hong Kong (Canham, 2003), and the outbreak in Toronto (Rothstein et al., 2003) is the need to maintain personal income during emergencies. While persons with permanent positions often have sick leave or other mechanisms of maintaining their salaries, many persons working for an hourly wage, those working on a daily basis and the self-employed may lose most or all of their income during a quarantine. The need to assure income during a period of quarantine is essential to gain broad public cooperation, and

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mechanisms for doing this, even for undocumented workers, must be part of equitable quarantine planning. It is also a generally agreed upon principle of quarantine that the state must accept the responsibility for the well-being of persons whose activities are restricted. On the one hand, this means that it is never permissible to mix asymptomatic individuals who are at risk for disease because of their previous contacts with already ill persons who are not in quarantine, but are in isolation. Unfortunately, failure to respect this distinction characterized some of the hastily organized procedures in several areas where SARS outbreaks occurred. It is also essential to recognize the serious psychological impact quarantine may have (Hawryluck et al., 2004), and to provide appropriate resources to maintain social support among persons in quarantine and communication between them and the general community. In the United States, SARS cases were extremely rare, and there were no outbreaks (Centers for Disease Control and Prevention, 2003c). However, with many travelers arriving from outbreak areas, confusions over the risk factors to apply in evaluating ill travelers, and little or no preparation in many areas of the country, several hundreds of people were restricted as ‘‘possible’’ SARS cases or contacts. In some cases, these decisions were made by ambulance attendants or EMT personnel, sometimes at the behest of airline staff (Wichita (KS) Eagle, 2004); in other areas, popular anxieties forced the isolation of travelers returning from China even when there was no longer a rationale for such restrictions; in many areas public health authorities failed to exercise their authority or responsibility by establishing appropriate screening criteria for sick passengers, by clarifying the status of returning travelers, or by intervening in decision making by ill-informed and unauthorized persons. It should be noted that when experienced public health officials took the lead, potentially difficult situations were handled professionally, limiting the harms which travelers or the general public might experience (San Diego (CA) Union-Tribune, 2003). While public health emergencies arising from natural infections are far more likely, intentional uses of microbes as weapons are in many ways more problematic challenges for public health officials. First, the recognition that such events represent criminal behavior, or even attacks on the security of the United States, means that law enforcement and military personnel will be involved in formulating the official response, as the FBI was in the anthrax mailings in 2001 (Butler, Cohen, Friedman, Scripp, & Walz, 2002). Unfortunately, this may complicate the obligation of public health officials to protect the health of the community within the appropriate limits of due process. While many police officials are sensitive to due process issues, the

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military has little experience in this area, and based on past planning for civil emergencies, appears more likely to neglect these matters in an effort to accomplish its mission (Department of the Army, 1984). It is therefore extremely important that decisions with regard to activities directly affecting the public’s health be vested in public health officers under the supervision of elected officials and the courts. And it is equally important that impartial judicial oversight of quarantine be assured. This is an aspect of emergency planning which has as yet had only limited implementation in this country (Matthews, 2003), although it has been incorporated into the international understanding of civil rights for nearly two decades as the ‘Siracusa principles’ (UN Economic and Social Council, 1985). While the ethos of public health officials is one of the application of science in the service of the community, their actions have at times been inequitable, based on unscientific attitudes about the predisposition of various ethnic groups to disease, or ineffective because of misunderstandings about the route of disease spread, the timing of contagiousness, or profound social and cultural gaps between the officials and the communities they served. Such inequities are quickly recognized by the public and can work to undermine its confidence in official decisions and its willingness to cooperate with them.

2. APPROACHES TO IMPROVING QUARANTINE It should be central to our planning for public health emergencies that disease control should be accomplished by ‘‘the least intrusive method’’. Quarantine is a last resort, involving huge costs, both financial and social, and, in some cases, only of uncertain value in helping to control disease outbreaks. Quarantine is strictly a tool for control of certain types of contagious diseases. It is not and never should be used as a method of ensuring control over civilian populations or in a misguided effort to reduce the chances of civil unrest or disorder. Indeed, the inappropriate or poorly effected use of quarantine is more likely to provoke turmoil than is the threat of epidemic disease itself (Leavitt, 2003; Colgrove, 2004). As a public health function, it should be the responsibility of public health officials. A crucial factor in the acceptability and effectiveness of any strategy used to address a public emergency is the establishment of mutual trust between the public and civil authorities. Such trust requires at least three things: responsible decision making which fairly distributes burdens and awards benefits on the bases of capacity to contribute and need for assistance, a firm commitment to open and honest public communications, and respect for the

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capacities of individuals and communities to best judge their own needs and to play a major, and sometimes a lead, role in addressing them (Glass & Schoch-Spana, 2001). Decisions about controlling a disease outbreak rest not only on scientific knowledge, but also on social and political judgments. In a democracy the public are entitled to know clearly the purpose of a quarantine, the criteria for quarantine, the persons responsible for carrying out the quarantine, and the criteria which would allow the quarantine to be lifted. Public trust is also founded on the commitment of officials to use objective knowledge to the greatest extent possible to legitimate their decisions. It is clear now that many of the control measures used in the SARS outbreak were ineffective, or erroneous, including fever screening of travelers or city residents, extending quarantine beyond persons in direct face-to-face contact with persons ill with SARS, or assuming that persons were infectious even before they became symptomatic. Early in the course of any disease outbreak we can expect that measures will be taken which subsequently are found to be unnecessary or ineffective. Officials should be prepared to modify regimens as soon as scientific evidence warrants. Credibility is more likely to be maintained when new knowledge is applied to correct previous inaccurate assumptions than when decisions are rigidly maintained in the face of contrary evidence. It is possible that political leaders will insist on certain measures because of their symbolic significance or because of misunderstandings of their previous effectiveness (WHO, 2004). While all official actions are ultimately the responsibility of the elected officials, it is important for public health experts not to rationalize political decisions with dubious science. Our experiences with SARS, as well as more sophisticated analyses of previous epidemics, like the Influenza Epidemic of 1918–1919, offer us more solid scientific ground on which to base quarantine decisions, as well as better understanding of the policy implications such decisions carry. There are both scientific and social aspects of quarantine which should be modified in order to improve the likelihood of public acceptance, to assure equitable application of quarantine, and to ameliorate the harm which quarantine can be expected to cause. The recent experience with SARS emphasized the practicability of home quarantine, reserving congregate quarantine only for those who are homeless, for travelers, or as an alternative for those who live alone or who prefer not to remain at home. Public acceptance will require a clear presentation by expert officials of the rationale for quarantine. Wide variations in quarantine arrangements within some countries were felt to undermine public confidence in the rationale for and fair application of quarantine (Rothstein et al., 2003). It

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will also require a comprehensive plan for addressing the needs of persons who may be quarantined – including such things as protection of people’s jobs and income during quarantine, assuring delivery of food and fuel, and making the widest possible use of home-based quarantine which will help to keep families together. Persons under quarantine orders should have reasonable access to due process proceedings under which they may challenge such orders or apply for release. Therefore, courts and legal counsel must be prepared, both intellectually and practically, to participate in such proceedings. Courts need to have a solid understanding of the technical as well as the legal bases for quarantine. Arrangements should be available for electronic court appearances by quarantinees. And, counsel should be available to persons challenging quarantine orders. Better technical understanding will require educational efforts by public health experts for both judges and attorneys. While some efforts have been made to educate legal counsel in public health departments (Matthews, 2003; Centers for Disease Control and Prevention, 2004c), there is still a great need to educate attorneys who could speak for quarantinees. Local bar associations and civil liberties groups should work with public health and other legal experts to provide this training and to develop a roster of counsel who would be available to take such cases on a pro bono basis in an emergency. Consideration might also be given to assigning jurisdiction in such cases to a single court easily accessible both to state officials and to counsel for petitioners, as has been done in Minnesota (Gustafson, 2004). State laws protecting jobs and assuring family income during quarantine are essential, as demonstrated recently in Canada (Rothstein et al., 2003) and Hong Kong (Canham, 2003). In one survey of 111 people in Toronto who were quarantined or had a family member or close friend quarantined, the leading problems associated with quarantine were ‘‘emotional difficulty being confined’’ and ‘‘did not get paid due to missing work’’ (Blendon, Benson, DesRoches, Raleigh, & Taylor-Clark, 2004). Such protection should include not only quarantinees themselves, but also persons who may be needed to remain at home to look after quarantined persons. Such protections will be especially important in encouraging voluntary absences for people whose jobs would not allow them to work from home (New Mexico Employment Law Letter, 2003). It is also important that plans for quarantine include provision of social and psychological support to quarantinees and their families. The psychological impact, often strong throughout the affected community, can be especially severe for persons quarantined as being at risk for developing illness, with substantial numbers of persons quarantined in Canada

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experiencing depression or Post-Traumatic Stress Disorder (Hawryluck et al., 2004). Efforts need to be planned for in advance to reduce the psychological impact of quarantine, for example by making arrangements for electronic contact of quarantinees with the general community through videophone and internet connections. Professional support by social workers should be routinely provided to assist quarantinees and their families, and provisions for referral to clinical psychologists and psychiatrists should be in place for persons showing evidence of more severe emotional impact. There is a considerable likelihood that people will make every effort to avoid houses where quarantinees are living. Quarantinees and their families need to be assured of regular deliveries of food, fuel, and medications, regular postal delivery service, and the maintenance of regular trash pickups. Assurances will also need to be provided to other residents in buildings housing quarantinees that they and their families are not being put at risk by the persons under quarantine living there. All residents will need prompt access to knowledgeable public health and medical advice to help address their concerns. It would seem appropriate to treat quarantinees and their families as public benefactors, assuming burdensome restrictions in order to protect the health of the larger community. As such, they should be entitled to every consideration while undergoing these restrictions. Under no circumstances should quarantinees and persons in isolation, who are actively ill, be held together, a procedure which would only increase the risk to the health of quarantinees, as it has in past outbreaks (Markel, 1997). It is especially important that persons in quarantine and their families receive priority for medical attention, whether related to the outbreak or not, and for preventive or therapeutic agents which emerge as helpful as the outbreak progresses.

3. RECOMMENDATIONS FOR A MORE COMPREHENSIVE APPROACH TO DISEASE CONTROL IN EMERGENCIES There are a wide range of tools available to help control disease outbreaks. Methods of increasing ‘‘social distance’’, such as ‘‘snow days’’, school closings, rescheduling large public gatherings, encouraging people to work at home when possible, and suspending public transportation, are all potentially of use, and are likely to be less disruptive and more acceptable than impositions of quarantine. Even personal separation of high-risk ‘‘contacts’’ can be accomplished without conventional involuntary incarceration, using

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voluntary or supervised home quarantine as was done so successfully in Toronto (Svoboda et al., 2004). On the other hand, authoritarian procedures to quarantine large numbers of people indiscriminately can be counterproductive, as was exemplified at the Amoy Gardens apartment house (Government of Hong Kong, 2003) where a large number of residents fled the building in anticipation before the quarantine could be put in place (Mandavilli, 2003). Similar behavior to avoid drastic quarantine occurred in Taiwan (McNeil, 2003). The use of vaccines or immune globulins or of prophylactic antibiotics or antivirals may also have important roles to play in some outbreak situations. Control of insect or animal reservoirs of infection may be crucial in particular cases, as with West Nile Virus or Avian Influenza. However, comprehensive planning for future outbreaks must include certain factors which are likely to play a role no matter what the infectious agent is. These factors include the confusion and uncertainty of the early phase of any disease outbreak, and public concerns about the risks of infection, coupled with long held attitudes (Lasker, 2004) about the trustworthiness of public officials, the likelihood of equitable or inequitable solutions to community problems, the personal economic impact of proposed strategies, and the basic needs which individuals and families have for reassurance, for protection, and for support. Thus, a key element in a comprehensive disease control program is a plan for effective, reliable, and trustworthy public communication (Covello, Peters, Wojtecki, & Hyde, 2001). A second key element is a form of creative leadership which is uncommon, but essential in an emergency. One of the most remarkable stories of the response to the World Trade Center attacks in 2001 was the spontaneous organization of the evacuation of several hundred thousand persons by boat from lower Manhattan. This successful example of innovative public responsiveness to a disaster of enormous magnitude was in large part due to the effective actions of the Coast Guard Commandant who was captain of the Port of New York. This man recognized that his most valuable contribution as a professional was not to take over the evacuation, but to support it, allowing the public broad latitude to make its own decisions, as circumstances demanded, while providing whatever technical support was necessary to support the safety and efficiency of the operation (Kendra, Wachtendorf, & Quarantelli, 2003). Such intelligent and timely support can be an example to other public servants in their role of aiding the public in its response to emergencies. While public health authorities have invaluable specialized information, and, at times, may need to make authoritative decisions for the entire community, every effort should be made to respect

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the preferences of the public to the greatest extent possible, and to recognize that sometimes the most valuable contribution public servants can make is simply to serve the public.

ACKNOWLEDGMENT The research on which this article is based was supported in part under a Cooperative Agreement between the Centers for Disease Control and Prevention and the Association of Schools of Public Health providing for Academic Centers for Public Health Preparedness.

REFERENCES Barbera, J., Macintyre, A., Gostin, L., Inglesby, T., O’Toole, T., DeAtley, C., Tonat, K., & Layton, M. (2001). Large-scale quarantine following biological terrorism in the United States: Scientific examination, logistic and legal limits, and possible consequences. Journal of the American Medical Association, 286, 2711–2717. Bell, D. M., & World Health Organization Working Group on International and Community Transmission of SARS. (2004). Public health interventions and SARS spread, 2003. Emerging Infectious Diseases, 10(11), 1900–1906. Blendon, R. J., Benson, J. M., DesRoches, C. M., Raleigh, E., & Taylor-Clark, K. (2004). The public’s response to Severe Acute Respiratory Syndrome in Toronto and the United States. Clinical Infectious Diseases, 38, 925–931. Butler, J. C., Cohen, M. L., Friedman, C. R., Scripp, R. M., & Walz, C. G. (2002). Collaboration between public health and law enforcement: New paradigms and partnerships for bioterrorism planning and response. Emerging Infectious Diseases, 8, 1152–1156. Canham, J. (2003). SARS – Legal obligations and implications for employers. Hong Kong Lawyer (May) 2003. http://www.hk-lawyer.com/2003-5/May03-phprac.htm (accessed on February 21, 2004). Centers for Disease Control and Prevention. (2003a). Efficiency of quarantine during an epidemic of Severe Acute Respiratory Syndrome – Beijing, China, 2003. Morbidity Mortality Weekly Report, 53, 1037–1040. Centers for Disease Control and Prevention. (2003b). Use of quarantine to prevent transmission of Severe Acute Respiratory Syndrome – Taiwan, 2003. Morbidity Mortality Weekly Report, 52, 680–683. Centers for Disease Control and Prevention. (2003c). Severe Acute Respiratory Syndrome (SARS) report of cases in the United States. Final Report: October 1, 2003. http:// www.cdc.gov/od/oc/media/sars/cases.htm (accessed on February 21, 2004). Centers for Disease Control and Prevention. (2004a). Public health guidance for communitylevel preparedness and response to Severe Acute Respiratory Syndrome (SARS) Version 2, Supplement D: Community containment measures, including non- hospital isolation and quarantine, January 8, 2004. http://www.cdc.gov/ncidod/sars/guidance/d/pdf/d.pdf (accessed on December 1, 2004).

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Centers for Disease Control and Prevention. (2004b). Postexposure prophylaxis, isolation, and quarantine to control an import-associated measles outbreak – Iowa, 2004. Morbidity Mortality Weekly Report, 53, 969–971. Centers for Disease Control and Prevention. (2004c). Public health legal preparedness materials: Materials related to quarantine and isolation. http://www.phppo.cdc.gov/od/phlp/ QuarantineIsolation.asp (accessed on November 26, 2004). Clarke, L. (2002). Panic: Myth or reality? Contexts I. http://www.contextsmagazine.org/content sample v1-3.php (accessed on September 27, 2004). Colgrove, J. (2004). Between persuasion and compulsion: Smallpox control in Brooklyn and New York, 1894–1902. Bulletin of the History of Medicine, 78, 349–378. Covello, V. T., Peters, R. G., Wojtecki, J. G., & Hyde, R. C. (2001). Risk communication, the West Nile virus epidemic, and bioterrorism: Responding to the communication challenges posed by the intentional or unintentional release of a pathogen in an urban setting. Journal of Urban Health, 78, 382–391. Davis, M. C., & Kumar, R. C. (2003). The scars of SARS: Balancing human rights and public health concerns. Hong Kong Lawyer (May) 2003. http://www.hk-lawver.com/2003-5/ MayO3-phprac.htm (accessed on February 21, 2004). Department of the Army. (1984). Operation Garden Plot. The United States Civil Disturbance Plan 55-2. June 1, 1984. http://www.cafes.net/mo/Gardenplot.htm (accessed on August 8, 2004). Edelson, P. J. (2003). Quarantine and social inequity. JAMA: Journal of the American Medical Association, 290, 2874. Glass, T. A., & Schoch-Spana, M. (2001). Bioterrorism and the people: How to vaccinate a city against panic. Clinical Infectious Diseases, 34, 217–223. Gostin, L. O., Burris, S., & Lazzarini, Z. (1999). The law and the public’s health: A study of infectious disease law in the United States. Columbia Law Review, 99(1), 59–128. Government of Hong Kong Special Administrative Region, Department of Health. (2003). Outbreak of Severe Acute Respiratory Syndrome (SARS) at Amoy Gardens, Kowloon Bay, Hong Kong. Main findings of the investigation. http://www.info.gov.hk/info/ap/pdf/ amoy e.pdf (accessed on September 27, 2004). Gustafson, P. (2004). A quiet study of new quarantine law; State officials are sketching out plans for quarantine hearings in case a SARS-like disease reaches Minnesota. Star Tribune (Minneapolis, MN), February 2, p. lB. Harrisson, T. (1989). Living through the blitz. New York, NY: Schocken Books. Hawryluck, L., Gold, W. L., Robinson, S., Pogorski, S., Galea, S., & Styra, R. (2004). SARS control and psychological effects of quarantine, Toronto, Canada. Emerging infectious disease [serial on the Internet]. 10. http://www.cdc.gov/ncidod/EID/vol10no7/03-0703.htm (accessed on September 27, 2004). Kendra, J., Wachtendorf, T., & Quarantelli, E. L. (2003). The evacuation of lower Manhattan by water transport on September 11: An unplanned ‘‘success’’. Joint Commission Journal on Quality and Safety, 29, 316–320. Lasker, R. (2004). Redefining readiness: Terrorism planning through the eyes of the public. Center for the advancement of collaborative strategies in health. The New York Academy of Medicine. http://www.cacsh.org/pdf/redefiningreadinessstudy.pdf (accessed on December 1, 2004). Leavitt, J. W. (2003). Public resistance or cooperation? A tale of smallpox in two cities. Biosecurity & Bioterrorism, 1(3), 185–192.

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Lloyd-Smith, J. O., Galvani, A. P., & Getz, W. M. (2003). Curtailing transmission of severe acute respiratory syndrome within a community and its hospital. Proceedings. Biological Sciences/The Royal Society, 270(1528), 1979–1989. Mandavilli, A. (2003). SARS epidemic unmasks age-old quarantine conundrum. Nature Medicine, 9, 487. Markel, H. (1997). Quarantine! European Jewish immigrants and the New York City epidemics of 1892. Baltimore, MD: Johns Hopkins University Press. Matthews, G. W. (2003). Public health law. Presented at the CDC public health law conference: June 16–18, 2003. http://www.phppo.cdc.gov/od/phlp/conference03/ (accessed on February 21, 2004). McClain, C. (1988). Of medicine, race, and American law: The bubonic plague outbreak of 1900. Law Social Inquiry: Journal of the American Bar Foundation, 13, 447–513. McNeil, D. G. (2003). Fight in Taiwan is impeded by resistance to isolation. New York Times, May 12, p. A12. New Mexico Employment Law Letter. (2003). Health epidemics raise employment law issues. New Mexico Employment Law Letter 9. Oregon Department of Human Services. (2002). Smallpox: Spread, control and counterintuition. CD Summary, 51, 1–2. Peiris, J. S. M., Chu, C. M., Cheng, V. C. C., Chan, K. S., Poon, L. L. M., Law, K. L., Tang, S. F., Hon, T. Y. W., Chan, C. S., Chan, K. H., Ng, J. S. C., Zheng, B. J., Ng, W. I., Lai, R. W. M., Guan, Y., Yuen, K. Y., & members of the Hong Kong University/United Christian Hospital SARS Study Group. (2003). Clinical progression and viral load in a community outbreak of coronavirus-associated SARS pneumonia: A prospective study. Lancet, 363, 1767–1772. Riley, S., Fraser, C., Donnelly, C. A., Ghani, A. C., Abu-Raddad, L. I., Hedley, A. J., Leung, G. M., Ho, L. M., Lam, T. H., Thach, T. Q., Chau, P., Chan, K. P., Lo, S. V., Leung, P. Y., Tsang, T., Ho, W., Lee, K. H., Lau, E. M. C., Ferguson, N. M., & Anderson, R. M. (2003). Transmission dynamics of the etiological agent of SARS in Hong Kong: Impact of public health interventions. Science, 300(5627), 1961–1966. Risse, G. B. (1992). ‘‘A long pull, a strong pull, and all together’’: San Francisco and bubonic plague, 1907–1908. Bulletin of the History of Medicine, 66, 260–286. Rothstein, M. A., Alcalde, M. G., Elster, N. R., Majumder, M. A., Palmer, L. I., Stone, T. H., & Hoffman, R. E. (2003). Quarantine and isolation: Lessons learned from SARS. Unpublished report to the Centers for Disease Control and Prevention. http://www.louisville.edu/ medschool/ibhpl/images/pdf/SARS REPORT.pdf (accessed on September 26, 2004). San Diego Union-Tribune. (2003). San Jose airport quarantines Asian flight. San Diego UnionTribune, April 7. Smith, C. (2001). Faith and doubt: The imaginative dimensions of the Great Chicago fire. In: S. Biel (Ed.), American disasters (pp. 129–169). New York: New York University Press. Svoboda, T., Henry, B., Shulman, L., Kennedy, E., Rea, E., Ng, W., Wallington, T., Yaffe, B., Gournis, E., Vicencio, E., Basrur, S., & Glazier, R. H. (2004). Public health measures to control the spread of the Severe Acute Respiratory Syndrome during the outbreak in Toronto. New England Journal of Medicine, 350, 2352–2361. UN Economic and Social Council. (1985). United Nations, Economic and Social Council, subcommission on prevention of discrimination and protection of minorities, Siracusa principles on the limitation and derogation of provisions in the international covenant on civil and political rights, Annex, UN Doc E/CN.4/1985/4. http://www.umn.edu/ humanrts/instree/siracusaprinciples.html (accessed on September 26, 2004).

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UN Office for the Coordination of Humanitarian Affairs. (2003). Tajikistan: Measles outbreak contained by mass vaccination. http://www.irinnews.org/report.asp?ReportID ¼ 31818&SelectRegion ¼ CentralAsia&SelectCountry ¼ TAJAKISTAN (accessed on September 27, 2004). Weinstein, I. (1947). An outbreak of smallpox in New York City. American Journal of Public Health, 37, 1347–1384. Wenzel, R. P., & Edmond, M. B. (2003a). Managing SARS amidst uncertainty. New England Journal of Medicine, 348, 1947–1948. Wenzel, R. P., & Edmond, M. B. (2003b). Listening to SARS: Lessons for infection control. Annals of Internal Medicine, 139, 592–593. Wichita (KS) Eagle (2004). SARS scare hits family in pocketbook. Wichita (KS) Eagle, February 2, 1A. World Health Organization (WHO). (2004). WHO consultation on priority public health interventions before and during an Influenza pandemic. Geneva, Switzerland: World Health Organization, 16–18 March. http://www.who.int/csr/disease/avian influenza/en/final.pdf (accessed on December 1, 2004).

CHAPTER 3 THE 2003 SARS OUTBREAK IN CANADA: LEGAL AND ETHICAL LESSONS ABOUT THE USE OF QUARANTINE Nola M. Ries It is not surprising that the advent of a frightening, seemingly new public health menace has prompted consideration of coercive measures. Throughout history, plagues have been met with restrictions upon individual liberties. (Parmet, 2003, p. 95)

INTRODUCTION The 2003 global outbreak of Severe Acute Respiratory Syndrome (SARS) was an abrupt reminder that infectious diseases pose a continuing threat to human health. In 1967, U.S. Surgeon General William H. Stewart declared ‘‘it was time to close the book on infectious diseases’’ (Garrett, 1994, citing W.H. Stewart, ‘‘A Mandate for State Action,’’ presented at the Association of State and Territorial Health Officers, Washington, DC, December 4, 1967). In the latter half of the twentieth century, many shared this bold view that medical science had vanquished infectious disease. As a result, public health struggled to remain relevant in the face of advances in pharmaceuticals, surgery, genetics and other areas that were becoming increasingly dominant in the quest to extend and enhance human life. SARS forced many to rethink the significance of public health and the crisis, though Ethics and Epidemics Advances in Bioethics, Volume 9, 43–67 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09003-0

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relatively short-lived, (for commentary on the disparities between the responses to HIV and SARS, see e.g. Altman (2003)) underscored the need to rebuild public health capacity that had been allowed to slip down the health system priority list. Outside Asia, Canada was the country hardest hit by SARS. The outbreak took 44 lives, threatened many others and created numerous challenges for public health officials and for the acute health care system. In particular, SARS highlighted serious deficiencies in public health infrastructure and preparedness. As in other countries, officials in Canada were required to weigh and implement various interventions to control the spread of the disease, including quarantine. In this chapter, I provide a legal and ethical discussion of the use of quarantine to control infectious disease outbreaks, using the Canadian experience with SARS as a case example. Quarantine represents the archetypal conflict that confronts public health: the tension between society’s dual interests in safeguarding individual liberty while protecting and promoting the health of its citizens. I identify legislative authority for imposing quarantine on individuals and discuss limits on its use. Although the law may confer broad authority on public health officials to impose measures like quarantine, I argue those officials ought to be guided by ethical principles in considering when to use coercive powers that abrogate individual liberties. To this end, I discuss ethical frameworks to guide and inform public health decision making. Finally, I comment on quarantine’s impact on individuals, including psychological and economic impacts as well as its effect on the health care system.

SARS IN CANADA: A BRIEF CHRONOLOGY SARS emerged in China in November 2002. The disease traveled to Canada in late February 2003 when an elderly woman who acquired the disease in Hong Kong returned to her home in Toronto, Ontario, Canada’s most populous metropolitan area with approximately 4.6 million people. She died 10 days after her return. Two days later, her 44-year-old son went to the emergency department of a major Toronto hospital, exhibiting high fever, a severe cough and difficulty in breathing – symptoms that a couple of weeks later would trigger alarm bells as a potential SARS case, but, at the time, health care workers did not know what confronted them. While awaiting admission, the man remained in an open area of a busy emergency department for 18–20 hours. This delay in admitting and isolating him was due, in

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part, to hospital overcrowding. Many patients and staff were exposed to the man before he was isolated. This patient died a week later. By then, public health officials realized that the mysterious disease outbreak in Asia had gained a foothold in Canada.1 SARS began to spread to patients, health care workers and visitors in several hospitals in the Toronto area. Hospitals at the epicenter of the outbreak began closing emergency and intensive care services and refused new admissions. By late March 2003, the Ontario government amended its public health statute, the Health Protection and Promotion Act, to classify SARS as a reportable, communicable disease. With the addition of SARS to the statute, public health officials could trace infected individuals and their contacts and use measures, including quarantine, to try to limit the spread of disease. On March 26, 2003, the Ontario government declared a provincial state of emergency under the Emergency Management Act (1990). The government then ordered all hospitals in the Greater Toronto area to activate ‘‘Code Orange’’ emergency plans that required them to suspend non-essential services, restrict visitors, and create isolation units for SARS patients. Several days later, all hospitals in Ontario were required to implement access restrictions. In short, [t]he hospital milieu changed abruptly in late March. A command structure was put in place in the hospital and public health directives from the province enacted authoritatively. Physical access to the hospital was restricted to a single entrance. [Those] whose work was deemed non-essential were told to stay at home. Visitors were not allowed, with some exceptions. Surgical procedures and outpatient appointments were cancelled. The cafeteria was closed y infection control procedures took precedence over almost all other aspects of hospital function. (Maunder, 2004, p. 1118)

Quarantine was used extensively during the outbreak, with tens of thousands of individuals observing quarantine. For example, anyone who had visited certain hospitals during specific time periods was asked to observe quarantine. One thousand and seven hundred high school students were quarantined after one student at the school became ill. In most cases, individuals complied with quarantine on a voluntary basis, but public health officials sought legally enforceable quarantine orders in a small number of cases. Svoboda et al. (2004) note that over 13,000 Toronto residents voluntarily complied with quarantine, and the city’s public health department had to resort to mandatory orders in only 27 cases. This accounted for just 0.1% of individuals in the metropolitan region requiring quarantine. In contrast with other countries where quarantine was enforced more oppressively, in Canada, individuals were not threatened with imprisonment

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or execution, as was the case in China (Mitka, 2003). In Canada, there were no barricades and tape to seal people inside buildings as occurred in Hong Kong (Mandavalli, 2003). There was no issue of electronic wrist tags as in Singapore and no contracting of security companies to install surveillance cameras. Many health care workers in the Toronto region were quarantined. ‘‘Work quarantine’’ also was imposed, which required health workers to travel directly between work and home without using public transit and without stopping at any other destination. They also had to separate themselves from family members while at home, wear masks when in contact with others in their household, and not have visitors. Over half of Toronto’s 850 paramedics ended up under 10-day home quarantine during the outbreak (Silverman, Simor, & Loufty, 2004). In total, Canada had 438 cases of SARS; 251 of those were probable and 187 suspected. Ultimately, 44 people died from the disease.

A BRIEF HISTORY OF QUARANTINE Quarantine is one of the oldest public health tools, used by authorities to quell the spread of disease long before microscopic agents were understood as the source of contagion (Sehdev, 2002; Clemow, 1929). Its roots are in the quarantine of shipping vessels, primarily to prevent spread of contagion via infested cargo and persons. One commentator notes that quarantine practices have long been notorious for their ill-treatment of and cruelty to travelers. For centuries, travelers faced involuntary isolation based on arbitrary regulations and irrational fears in often unhealthy, degrading conditions, sometimes reinforced by the threat of execution. (Fidler, 2000, p. 289)

Indeed, quarantine has a history of being imposed with a heavy hand by officials motivated by fear and prejudice rather than medical fact. In 1900, after the body of a bubonic plague victim was discovered in San Francisco’s Chinatown, the U.S. President ordered quarantine of all Chinese and Japanese residents of the city based, in part, on ‘‘the notion that Asians were particularly susceptible to plague because of their dietary reliance on rice rather than animal protein’’ (Edelson, 2003, p. 2874). Further evidence of questionable attitudes toward and uses of quarantine emerged in the earlier years of the HIV pandemic. American public opinion polls in the l980s revealed that ‘‘28 to 54 percent of the respondents favored ‘quarantine’ of people with AIDS in ‘special places to keep them away from the general public’’’ (Gostin & Zeigler, 1987, p. 11).

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The nation of Cuba did, in fact, institute mandatory quarantine for HIVpositive persons between 1986 and 1994, but ‘‘no systematic epidemiological studies of HIV infection in Cuba have been published that would clarify the relative effects of quarantine’’ and other measures (Hansen & Groce, 2003, p. 2875). There is no evidence that quarantine was applied in a discriminatory manner in Canada during the 2003 SARS outbreak. In fact, those who were asked to observe quarantine represented a wide cross-section of the population and individuals disadvantaged by poverty, race or disability were not disproportionately represented. One survey of over a hundred Torontonians who were in quarantine revealed that 72% had a college education or higher and 48% had an annual household income of more than C$75,000 (Hawryluck et al., 2004). Although the sample size was relatively small, these findings were not surprising considering that health care workers comprised a large number of people who observed quarantine. Nonetheless, the lessons of history remain instructive to ensure that past prejudices are not repeated.

LEGISLATIVE AUTHORITY FOR QUARANTINE IN CANADA The Canadian Constitution divides authority over various subjects between the federal government and provincial governments (Constitution Act, 1867). The provinces have primary authority over health care, though the federal government exercises some authority in the health sphere through its spending powers (i.e. the ability to tax citizens and redistribute funds to provincial governments for health-related programs), criminal law power, and ‘‘peace, order and good government power,’’ which authorizes the federal government to act during times of national emergency (Jackman, 2000). The federal government also has explicit constitutional authority to quarantine persons and conveyances (such as airplanes and shipping vessels) entering and leaving the country. While provincial governments have authority to impose quarantine within provincial borders, the federal government’s quarantine powers are concerned with the international movement of people and goods. Both federal and provincial quarantine powers came into play during the 2003 SARS outbreak. The federal Quarantine Act and regulations authorize the government of Canada to appoint quarantine officers who may detain and assess individuals entering and leaving the country who are suspected of having a contagious disease listed in the regulations (cholera, plague, smallpox and

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yellow fever) or any other dangerous disease (Quarantine Act, 1985, Sections 8, 11). A ‘‘dangerous disease’’ is defined as one whose introduction to Canada ‘‘would, in the opinion of the quarantine officer concerned, constitute a grave danger to public health in Canada’’ (Quarantine Act, 1985, Section 2). Persons who are quarantined may appeal their detention to the federal Deputy Minister of Health or the Deputy’s designate (Quarantine Act, 1985, Section 9, 1368). Officers may also hold and inspect conveyances suspected of carrying persons or cargo that may be infected. In June 2003, the Canadian government amended the Quarantine Act regulations to add SARS to the list of contagious diseases. The incubation period of SARS was described as 20 days, meaning a quarantine officer could detain a person suspected of having SARS up to that period of time. In its public notices about amendments to the Quarantine Act, the federal government acknowledged that the World Health Organization recommended a quarantine period of 10 days and advised that quarantine officers would take that recommendation into account if an order had to be made. At the provincial level in Ontario, individuals were asked to observe a 10-day period of quarantine. Fortunately, during the outbreak, no federal quarantine officer faced a situation requiring the issuance of a quarantine order against an individual (Health Canada Fact Sheet, 2003). At the Vancouver International Airport, federal health officials relied on the Quarantine Act to detain an aircraft for decontamination because one passenger had SARS-like symptoms. Various criticisms have been directed at the adequacy and effectiveness of the Canadian response at airports. First, in 2002, the year prior to the SARS outbreak, the federal government transferred airport quarantine duties to customs officials with no special training to carry out those responsibilities (National Advisory Committee, 2003, p. 205). When the SARS outbreak occurred, ‘‘quarantine officers were quickly overextended and eventually needed additional assistance’’ to carry out their duties (National Advisory Committee, 2003, p. 205). Additionally, early in the outbreak, before the cause of SARS was known, federal health officials could not provide definitive decontamination protocols for aircraft, cruise ships or other conveyances. Thermal scanning devices were deployed at the international airports in Toronto and Vancouver to screen for passengers with high temperature. Of approximately 2.4 million air travelers, 832 were identified as requiring further assessment due to high temperature. None had SARS (National Advisory Committee, 2003, p. 206). Some have questioned the utility of large-scale thermal scanning. In a thorough review of the epidemiology,

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transmission and control of SARS, Anderson and colleagues (2004) note that ‘‘the effectiveness of temperature screening at points of entry and exit as a control measure to limit between-country transmission is uncertain at present’’ (Anderson et al., 2004, p. 1104). In the wake of the SARS experience, the National Advisory Commission recommended the federal government ought to ensure that fully trained and informed quarantine officers should be available at airports [and other ports of entry] to deal with health threats, to provide information to and educate airport staff, customs officials, and airline personnel concerning the recognition of illness and measures to be taken to contain risk.’’ (National Advisory Committee, 2003, p. 207)

Before the SARS outbreak occurred, the Canadian government was in the process of reviewing its public health legislation, including the Quarantine Act. The emergence of SARS spurred the government to expedite legislative reform of the quarantine law, which was first enacted in 1872. In May 2004, the federal Minister of Health introduced a modernized statute in the Canadian Parliament, titled ‘‘An Act to prevent the introduction and spread of communicable diseases’’ (Bill C-36). This law is aimed at focusing greater emphasis on air travel, the modern mode of global disease spread (Health Canada News Release, 2004). The revised legislation also has a more extensive list of contagious diseases (which includes active pulmonary tuberculosis, anthrax, diphtheria, measles and poliomyelitis) and empowers the federal government to go so far as to close Canadian entry points to arrivals from a jurisdiction with an infectious disease outbreak. The federal government acknowledges that this would be ‘‘an extreme measure’’ (Health Canada News Release, 2004). In introducing the revised quarantine legislation in the Canadian Parliament, the Minister of State for Public Health remarked that the Quarantine Act was first drafted at a time when automobiles and jetliners were the stuff of science fiction. Needless to say, times have changed. We live in an age when people move from continent to continent in hours and days rather than weeks or months, often in airplanes and ships whose confined spaces provide a perfect breeding ground for highly communicable diseases to spread. Infectious diseases move like wildfire across the planet today. Diseases do not respect borders, so we know that we will face repeated threats to public health in the future. Among the hard lessons learned from the experience of SARS is the need to strengthen our quarantine legislation to help prevent the introduction and spread of both emerging and re-emerging communicable diseases (Hansard, 2004).

The proposed legislation must be reviewed by a parliamentary committee on health and then be approved by the Canadian House of Commons and Senate before being proclaimed into law.

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Each province and territory in Canada has public health legislation that establishes the powers of public health officials to carry out various functions including communicable disease control. This encompasses the authority to issue isolation and quarantine orders. In the province of Ontario, the Health Protection and Promotion Act empowers a medical health officer to order a person who is or may be infected with a communicable disease to ‘‘isolate himself or herself and remain in isolation from other persons’’; otherwise ‘‘conduct himself or herself in such a manner as not to expose another person to infection’’; undergo a medical examination; and submit to necessary treatment (Health Protection and Promotion Act, 1990, Section 22(4)). The medical health officer may issue such an order if she or he has reasonable and probable grounds to believe three conditions exist: (1) ‘‘a communicable disease exists or may exist or that there is an immediate risk of an outbreak of a communicable disease’’; (2) ‘‘the communicable disease presents a risk to the health of persons’’; and (3) ‘‘the requirements specified in the order are necessary in order to decrease or eliminate the risk to health presented by the communicable disease’’ (Health Protection and Promotion Act, 1990, Section 22(2)). The Health Protection and Promotion Act was amended during the 2003 SARS outbreak to specify that an order may be directed at an individual or a class of persons [Section 22 (5.0.1), amended, 2003, Chapter l, Section 15(1)]. This amendment was critical to enable public health officials to deal with situations involving hundreds or thousands of people who may have been exposed to an infectious disease, such as 1,700 high school students. The statutory amendment stipulates that notice may be communicated through the media or other public mechanism when the delay involved in notifying persons individually is ‘‘likely to cause a delay that could, in the opinion of the medical officer of health, significantly increase the risk to the health of any person’’ (Section 5.0.3). Under Ontario’s statute, a medical health officer must inform individuals subject to a quarantine order of their right to a hearing before the Health Services Appeal and Review Board, an administrative tribunal composed of 12 members appointed by the government (Ministry of Health Appeal and Review Boards Act, 1998). The individual must request a hearing in writing within 15 days of receiving notice of an order. In turn, the Board is obliged to hold a hearing within 15 days of receiving a hearing request and has authority to uphold, vary or rescind the order (Section 44). Despite efforts to safeguard the rights of those who are subject to quarantine orders, some legislative gaps and shortcomings are apparent. For instance, though individuals typically have a right to appeal an order, this

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protection may be illusory in many cases. A person may be ordered to observe quarantine for a period of 10 or 15 days from the date of the notice. Under Ontario’s legislation, the order takes effect immediately, even if the person subject to the order evinces an intention to appeal the order [Section 44 (3)]. After the Health Services Appeal and Review Board receives the notice of hearing, the Board has discretion to suspend the quarantine order, but is not bound to do so. By the time the Board hears the appeal, the matter may well be moot since the quarantine period will likely have passed. In addition, Ontario’s legislation and the federal Quarantine Act are silent with regard to obligations to assure acceptable detention conditions for persons under quarantine outside their homes. Model emergency health powers legislation developed by public health legal experts in the United States provides a template for legislative authority during an event such as an infectious disease outbreak (Gostin et al., 2002). This legislation explicitly addresses responsibilities of public health officials toward individuals who must comply with mandatory quarantine orders. For example, if an individual must wait out the quarantine period in a location other than her or his home, authorities must ensure those premises are safe and hygienic and provide individuals with necessities such as food, clothing, medication and means to communicate with the outside world. In addition, the model U.S. legislation provides for expedited judicial review of quarantine orders and entitles individuals to legal representation. Such legislative protections advance principles of fairness, due process and respect for persons.

LEGAL CHALLENGES TO QUARANTINE ORDERS Quarantine orders may be challenged on various legal grounds, but I focus briefly here on constitutional challenges under the Canadian Charter of Rights and Freedoms (1982) (the ‘‘Charter’’). The Charter, which became part of Canada’s Constitution in 1982, guarantees a number of fundamental rights with which the state cannot unjustifiably interfere. Quarantine orders may infringe on various rights protected under the Charter, including the freedom of assembly and association (Section 2), mobility rights (Section 6), rights to liberty and personal security (Section 7), freedom from arbitrary detention (Section 9), freedom from cruel and unusual treatment (Section 9), and equality rights (Section 15). The most likely constitutional basis for challenging a quarantine order is Section 7 of the Charter, which states ‘‘Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in

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accordance with principles of fundamental justice.’’ Section 7 protects against unreasonable, state-imposed restraints on liberty as well as government action that imposes severe psychological stress (New Brunswick v. JG., 1999; Blencoe v. British Columbia, 2000). Charter rights are not absolute and may be justified under Section 1 of the Charter, which states: The Canadian Charter of Rights and Freedoms guarantees the rights and freedoms set out in it subject only to such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society.

Under Section 1, the state may justify a Charter violation by convincing a court of four points: its action was based on a pressing and substantial concern; its goal was rationally connected to the limitation imposed on an individual’s rights; the limitation impairs the individual right in a minimal fashion; and there is proportionality between the benefits of the limitation and its harmful impact (R. v. Oakes, 1986). The key challenge under Section 1 is to balance the rights of individuals with the competing interests of society as expressed through government action. A former Chief Justice of the Supreme Court of Canada has advised that ‘‘[i]t may become necessary to limit rights and freedoms in circumstances where their exercise would be inimical to the realization of collective goals of fundamental importance’’ (R. v. Oakes, 136). The Supreme Court of Canada has further instructed that in justifying a limitation on a Charter right, the government need not provide ‘‘scientific demonstration’’; rather, it can defend its actions ‘‘by the application of common sense to what is known, even though what is known may be deficient from a scientific point of view’’ (RJR-MacDonald Inc. v. Canada (Attorney General), 1995, para. 137). Clearly, in implementing control measures during the early stages of a novel disease outbreak, public health authorities will often lack scientific facts and must make judgment calls about restricting individual liberties in the name of protecting the population as a whole. Despite this general guidance as to how Charter infringements may be justified, there is little Canadian jurisprudence directly addressing potential constitutional violations in the public health context. Consequently, Canada does not have a corpus of legal rulings that instruct how to apply specific Charter rights and the Section 1 justification test in regard to public health interventions. This contrasts with the United States, where courts have given specific instruction as to how to balance competing interests at stake in public health. For example, it has been noted that

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[t]he judge must defer to public health authorities on their choice of public health strategies. Public health orders get the most permissive judicial review y because they are based on objective criteria, are usually of limited duration, and are necessary to prevent imminent harm. (Richards & Rathbun, 2004, p. 356; Gostin, 2000)

In two cases where courts have balanced claims of individual Charter rights against a broader public health interest, the latter has prevailed. The 1995 Ontario court decision in Canadian AIDS Society v. Ontario involved HIV testing of stored blood that had been donated some 11 years previously. When the blood was collected from the donors between 1984 and 1985, they were not advised that the blood would be tested for HIV as no such testing capacity existed at that time. When testing became available, the Canadian Red Cross Society tested the stored samples to trace any recipients of contaminated blood. Twenty-two HIV-positive donors were identified; nine of whom had previously been identified, leaving 13 remaining donors. The issue that arose in this case was whether the Red Cross should notify the donors and report them to the Province of Ontario in accordance with the Health Protection and Promotion Act. The Canadian AIDS Society objected to donor notification and reporting on the basis that the donors had not consented to testing their blood for HIV, and notification and reporting would violate the donors’ privacy rights. The Court accepted that Section 7 of the Charter may be interpreted to recognize a blood donor’s privacy interest in regard to personal information revealed through testing their blood samples. However, the Court went on to rule that the public interest in mandatory reporting of HIV cases to public health authorities outweighed the individual donors’ privacy interests. The Court noted that ‘‘although due consideration will be given to the privacy rights of individuals, the state objective of promoting public health for the safety of all will be given great weight’’ (Canadian AIDS Society v. Ontario, 1995, para. 133). In 2002, a court in Ontario applied similar logic in adjudicating a Charter challenge by a tuberculosis patient who was under detention for treatment (Toronto (City, Medical Officer of Health) v. Deakin). The patient, who had consented to a four-month detention and treatment order by the medical health officer, challenged a four-month extension to the order that health professionals believed was necessary to control his tuberculosis. The patient, who had been physically restrained during several violent outbursts and was routinely restrained during ‘‘smoke breaks’’ to prevent escape (which he had done once to buy beer), argued the restraints and continued detention violated his constitutional liberty rights. In a brief judgment, the Court

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accepted his rights were violated, but concluded the infringement was justified under Section 1 of the Charter. The Court stated: What was done to [the patient] was carried out for the protection of public health and the prevention of the spread of tuberculosis, a disease that [a medical specialist] described as extremely contagious. [The patient] is in the early stages of the disease, it is eminently treatable now, but will become less responsive and more virulent if not treated. (Toronto (City, Medical Officer of Health) v. Deakin, 2002, para. 26)

Despite the dearth of Canadian constitutional jurisprudence in the public health context, it appears that courts will recognize the need to balance competing interests and will likely give deference to public health officials who must act during times of uncertainty and possible emergency. Only in situations involving arbitrary or unreasonable exercise of public health powers are courts likely to find a breach of rights protected under the Canadian Charter of Rights and Freedoms.

ETHICAL PRINCIPLES IN PUBLIC HEALTH ACTION Lawrence Gostin, a leading public health law expert, counsels that ‘‘[i]n a democratic society, coercive [public health] powers should be carefully justified. We have to balance the public health interests of society against the freedom of the individual’’ (Gostin, 2002, p. 415). Indeed, while the law may give sweeping powers to public health officials, those officials ought to weigh ethical considerations in deciding what public health interventions are justified in particular situations. The field of public health ethics, compared to clinical ethics, is relatively nascent. Only in the past several years have theorists attempted to formulate ethical frameworks for the justification of public health interventions (Kass, 2001; Callahan & Jennings, 2002; Uphsur, 2002). In the wake of the SARS outbreak, specific efforts have been made to identify ethical principles relevant to infectious disease outbreaks (Singer et al., 2003; Gostin et al., 2003). Callahan and Jennings (2002) note that public health is one of few professions backed by the coercive power of the state; the legal authority of public health officials to impose quarantine is one relevant example. They contend that, [b]ecause of its public and governmental roles, public health has ethical problems unlike those of most other professions. The relationship between ethics and law is a long and tangled one, but it is safe to say that most public health laws and regulations have behind them an explicitly moral purpose: that of promoting and protecting the lives of citizens. (Callahan & Jennings, 2002, p. 173)

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Kass (2001) also situates the need for a public health ethics framework in the coercive nature of many public health interventions: Indeed, it is in great part because such power is vested in public health by law that a code or framework of ethics designed specifically for public health is so very important. The need for a code of ethics for public health, then, might be viewed as a code of restraint, a code to preserve fairly and appropriately the negative rights of citizens to noninterference. (Kass, 2001, p. 1777)

Clearly, a number of ethical values come into play in the public health response to outbreaks of infectious diseases like SARS. Members of the Joint Centre for Bioethics at the University of Toronto have enumerated the following as ten key values: individual liberty; protection of the public from harm; proportionality; reciprocity; transparency; privacy; protection of communities from undue stigmatization; duty to provide care; equity; and solidarity (Singer et al., 2003). Gostin, Bayer, and Fairchild (2003) detail similar values. They cite the precautionary principle as central to public health ethics, which requires that steps be taken to protect the public against reasonably foreseeable threats, even in a climate of medical and scientific uncertainty. They emphasize principles of ‘‘least restrictive alternatives,’’ justice, and transparency, within which are subsumed concerns with individual liberty, fairness, privacy and due process. Kass (2001) suggests a six-step framework to guide public health officials in choosing an ethically-sound course of action by evaluating the various options available to them. She argues first that the goals of a public health intervention must be identified. In the context of quarantine, the purpose is to limit the spread of an infectious disease by segregating those who may carry the disease from uninfected individuals. Next, officials ought to evaluate the effectiveness of an intervention in achieving its goals. Quarantine clearly will not be effective in reducing spread of a disease that is not transmissible by ordinary community contact. Kass states that ‘‘[t]he question for policy and ethics analysis, then, is what quantity of data is enough to justify a program’s implementation? As a rule of thumb, the greater the burdens posed by a program the stronger the evidence must be to demonstrate that the program will achieve its goals’’ (Kass, 2001, p. 1778). Public health officials must also weigh the burdens or harms the intervention may place on individuals. Quarantine restricts individual liberty by limiting freedom of movement, and imposes various psychosocial burdens that I discuss in greater detail below. As the fourth step in the analysis, it is important to consider whether the burdens of an intervention can be minimized while retaining its efficacy. As Kass (2001) points out: ‘‘If 2 options

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exist to address a public health problem, we are required, ethically, to choose the approach that poses fewer risks to other moral claims, such as liberty, privacy, opportunity and justice. Making this assessment relies on the existence of sound data’’ (p. 1780). As well as being more ethically defensible, a less restrictive intervention is also more likely to withstand legal challenge. The penultimate step in Kass’ framework requires assessing how to implement an intervention in a fair manner that does not unjustifiably discriminate against specific groups. As history reveals, quarantine has been imposed unfairly for inexcusable reasons. Finally, public health officials must consider whether the benefits of an intervention outweigh the burdens. Kass (2001) also acknowledges that, ‘‘public health ethics must emphasize positive rights as well y . Public health has affirmative obligations to improve the public’s health and, arguably, to reduce certain social inequities’’ (2001, p. 1777; emphasis in original). In the specific context of large-scale quarantine, Barbera and colleagues (2001) argue public health authorities should address three key questions. First, does medical evidence indicate that quarantine is likely to be effective in limiting the spread of disease? Second, from a logistical perspective, can officials safely and effectively quarantine large numbers of people? Third, mirroring the last step of Kass’ framework, the adverse consequences of quarantine must be balanced against its potential benefits. It is arguable that the wide-scale imposition of quarantine during the SARS outbreak in Canada, albeit mostly voluntary, was used excessively and, in some cases, would fail to pass the threshold question of being an effective measure to diminish disease transmission. Beijing and Toronto both quarantined around 30,000 people, but Beijing had 10 times as many SARS cases as Toronto: 2,500 compared to Toronto’s 250. The U.S. Centers for Disease Control and Prevention has suggested ‘‘that only a third of the 30,000 Beijing residents quarantined during the SARS outbreak faced significant risk of contracting [the disease because] only residents who came into direct contact with a symptomatic patient were later infected; those who cared for a SARS patient carried the highest risk’’ (Diamond, 2003, citing Centers for Disease Control and Prevention, 2003). So if Beijing used quarantine too often, then Toronto’s even greater use is perhaps subject to even more criticism. It also may be contended that quarantine on this scale was unenforceable; indeed, research describes the inability of public health officials to contact individuals in a timely manner to advise them to observe quarantine. In Toronto, the Department of Public Health identified over 23,000 persons

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who were contacts of SARS patients and, arguably, ought to have been quarantined (Svoboda et al., 2004). Of these, approximately 9,000 could not be reached at all by public health officials, or only after the 10-day quarantine period had expired. Finally, evidence indicates that people with SARS are most infectious 5–10 days after developing symptoms (Peiris et al., 2003) and there are no documented cases of an asymptomatic individual transmitting the disease to another (Ksiazek et al., 2003). This knowledge suggests that quarantining people who have no symptoms will be of little utility. As a consequence, resources ought to be directed at segregating and caring for persons with symptoms and at public education strategies to ensure people can recognize symptoms of the disease and know when to seek medical attention.

THE IMPACT OF QUARANTINE The harsh toll SARS exacted, including the many detrimental impacts of quarantine, came to be termed the ‘‘collateral damage’’ of the outbreak (Bernstein, 2003). In this section, I highlight some of the consequences of quarantine, both for health care workers and others. Hawryluck et al. (2004, p. 1206) emphasize that ‘‘[k]nowledge and understanding of the experiences of quarantined persons are critical to maximize infectious disease containment and minimize the negative effects on those quarantined, their families and social networks.’’ It has been noted that, ‘‘the SARS outbreak is unique in recent history in its rapidity of transmission, its concentration in health settings and the large number of health care workers who have been infected’’ (Maunder et al., 2003, p. 1245). In fact, health care workers accounted for over 40% of SARS cases in the Toronto area and a key challenge was ‘‘to manage and allocate health care staff as the illness forced quarantine of dozens of SARSexposed workers’’ (Mackay, 2003, p. 1308). Many health care workers were isolated or quarantined, including those with infection control and microbiology expertise whose skills were desperately needed during the outbreak. Recent studies have assessed the impact of quarantine (and other measures associated with control of SARS) on health care workers and others (Nickell et al., 2004; Maunder et al., 2003; Maunder, 2004). In general, the unsurprising conclusion is that ‘‘the effect of SARS on the health care system in the greater Toronto area was dramatic y the SARS outbreak had significant psychosocial effects on hospital staff y . The effects on families and lifestyle was also substantial’’ (Nickell, et al., 2004, p. 793). Further, the

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National Advisory Commission (2003, p. 155) cautions that ‘‘the impact of SARS on individuals working within the health system should not be underestimated.’’ In regard to the specific impact of quarantine, an editorial in a Canadian nursing journal comments that: The procedure of quarantine, from its beginnings, seems to have been imposed from the outside, as a law or interdict, and resulted in, or at the very least represented, segregation, social and psychological isolation, stigma, reduced status, and the potential powerlessness of those affected. (Wynn & Peter, 2003, p. 207)

One nurse expresses her views as follows: ‘‘I am ordered into quarantine and feel as though such a restriction could apply only to some plague-threatened inhabitant of the Middle Ages’’ (Ellacott, 2003, p. 14). Health care workers in quarantine reported feeling disconnected and at a disadvantage when they returned to work because they were not up to date on key information, including latest infection control protocols. This reaction demonstrates the need for ongoing communication with workers who are in quarantine so that if they do not become ill, they can return to work feeling ready to do so. Physicians in quarantine who were interviewed at the height of the outbreak ‘‘described anxiety about the wellbeing of ill colleagues and their frustration in not being able to elicit details about their condition’’ (Straus, et al., 2004). While patient confidentiality must be respected, health care facilities ought to be aware that ‘‘for those quarantined, knowledge of how their colleagues were faring may have alleviated some of their stress y .’’ (Straus, et al., 2004). One Toronto hospital experimented with maintaining communication with health care workers during the quarantine. A number of our staff were put on home isolation after having unprotected exposure to a patient in our Intensive Care Unit y . Suddenly we were faced with a whole new challenge – how to communicate with large numbers of staff at home y . The hospital’s informatics staff quickly established a ‘‘lifeline’’ for staff by providing access to their hospital email from home and created a password-protected SARS Internet site through our website. This enabled staff to stay on top of what was happening at the hospital during their absence and reduced their reliance on media for information. (McBride, 2003, p. 52)

In addition to psychosocial impacts on health care workers, quarantine and other measures used to control the spread of SARS had major consequences on access to health care. The ‘‘Code Orange’’ directive that required hospitals to restrict access to all but the most critically ill patients meant that a vast number of services, including surgeries and other procedures such as radiation therapy for cancer patients, were cancelled (Bernstein, 2003). The

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quarantine of health care workers exacerbated this already difficult situation. The National Advisory Commission (2003, pp. 155–160) estimates the cost of addressing the surgical backlog at $32.1 million. In addition, family and friends of patients in hospital were either not allowed to visit, or access for visitors was severely restricted (Bernstein, 2003). When hospital services began returning to normal, surgeries that had been cancelled had to be rescheduled. One contentious point is that ‘‘patients were often allocated to operating rooms not based on urgency of their condition but based on an equitable distribution of finite operating resources within different surgical divisions (e.g. orthopaedics, neurosurgery, plastic surgery, and so on. Many felt this was not fair or appropriate resource allocation’’ (Bernstein, 2003, p. 39). Overall, ‘‘in the public perception, the SARS outbreak turned the modern world of healthcare on its head in Toronto, in the sense that healthcare workers were seen as victims and vectors of disease rather than healers, and hospitals were seen as contaminated areas rather than places fostering health.’’ (Maunder, 2004, p. 1122)

While quarantine during SARS had a unique impact on workers and patients within the health care system, it also disrupted the lives of ordinary citizens who faced over a week of segregation because they had the misfortune of possible exposure to SARS. Studies have focused on assessing the effect of quarantine on health care workers, but some research has attempted to explore the experiences of others who observed quarantine. The findings of one Toronto survey are not unexpected: All respondents described a sense of isolation. The mandated lack of social and, especially, the lack of any physical contact with family members were identified as particularly difficult. Confinement within the home or between work and home, not being able to see friends, not being able to shop for basic necessities of everyday life enhanced their feeling of distance from the outside world. (Hawryluck et al., 2004, p. 1210)

Quarantine also had significant economic consequences. Thousands of employees lost income while they stayed home to observe quarantine or provide care for others who were quarantined. It has been argued that the ethical value of reciprocity demands that the state compensate those whom it asks to stay home from work to comply with quarantine (Singer et al., 2003). Expressed in practical terms, [a] person potentially missing a mortgage or car payment may face a strong temptation to break quarantine in order not to lose earnings. By promising compensation, the government creates incentives to stay home, and thereby limits the risk that SARS may spread, thus reducing the economic dislocation caused by the disease. (Iacobucci, 2003, p. A24)

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Some people had to use vacation time or take unpaid leave in order to observe quarantine. It has been observed that ‘‘the initial refusal of governments to recognize the lack of an income cushion for Torontonians obeying quarantine orders clearly contributed to reluctance of some to stay away from work, further spreading SARS’’ (Canadian Public Health Association, 2003, p. 12). This view is echoed by legal counsel for the City of Toronto who was involved in drafted mandatory quarantine orders when individuals failed to accede to voluntary requests: People were cooperative, but among other things, the voluntary isolation presented financial hardships for families with one income earner who was suddenly placed under home isolation. The situation became extraordinarily difficult, and public health authorities found that a few circumstances required legal intervention. (Speakman, 2003, p. 63)

The government of Ontario enacted new legislation, the SARS Assistance and Recovery Act 2003, to give job protection to employees who were observing quarantine or had to stay home from work to care for another individual, such as a child, who was quarantined. This law, which came into force on May 5, 2003, had retroactive effect to March 26, 2003, to authorize unpaid leaves of absence for employees in various circumstances, including those observing quarantine or receiving treatment for SARS. A SARS Assistance Plan was also announced to offer some financial compensation to people who lost income during periods of quarantine.

CONCLUSION: LESSONS LEARNED AND LOOKING TO THE FUTURE The 2003 global outbreak of SARS forced public health systems worldwide to evaluate their capacity to respond to a novel disease crisis. As with other countries hit hard by the outbreak, quarantine was heavily used as a public health intervention to attempt to control the disease in Toronto, Canada. Individuals in Canada and other countries were extremely compliant in voluntarily accepting a temporary restriction on their liberty for the broader benefit of their communities. However, public health officials cannot always assume individuals will not resist coercive restrictions. Anderson and colleagues (2004) give the following caution: y it is difficult to escape the conclusion that the world community was very lucky this time round, given the very low transmissibility of the agent, plus the fact that fairly draconian public health measures could be put in place with great efficiency in Asian regions where the epidemic originated. Given the litigious nature of people in North

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America in particular, and to a lesser degree in western Europe, the control of SSEs [super-spreading events] in these regions might have presented greater problems if mass quarantining had been required. (Anderson et al., 2004, p. 1104)

A representative of the American Civil Liberties Union, echoing this concern, points out that ‘‘North American litigiousness’’ is far more characteristic of the United States than Canada: ‘‘I think Americans will be more skeptical about quarantine proposals than Canadians are, and probably more anxious to exercise their legal rights’’ (Tuller, 2003, p. Fl). Indeed, it is important to keep in mind that the law, particularly constitutionally-entrenched rights and freedoms, places important limits on the use of coercive public health interventions. As well, ethical principles serve to restrain the exercise of public health powers. In deciding whether to interfere with individual liberty during a disease outbreak, law and ethics both demand that officials ask themselves the following question: ‘‘Does a coercive intervention truly reduce aggregate health risks, and what, if any, less intrusive interventions might reduce those risks as well or better?’’ (Gostin, 2000, p. 20) It is arguable that quarantine was overused during the SARS outbreak and, in many cases, was likely not a truly effective measure in reducing disease spread. Commentators have suggested that ‘‘in hindsight, overrecognition of contacts, especially in two hospital-wide quarantine efforts, may have resulted in an overestimate of the number of persons requiring quarantine’’ (Svoboda et al., 2004, p. 2360). Yet, the phrase ‘‘in hindsight’’ is significant and public health officials clearly must have some degree of latitude when responding to a novel disease outbreak. Interventions that are based on up-to-date evidence and that are not applied in an arbitrary, unfair or discriminatory manner are most likely to pass legal and ethical scrutiny. Various examples from Toronto’s experience with SARS demonstrate that public health officials were concerned with applying quarantine fairly. For instance, although the outbreak had a major economic impact on businesses in Toronto’s Chinatown, quarantine was not applied in a discriminatory manner against Chinese Canadians. Historical practices of quarantine based on racial prejudices were not repeated. As well, public health officials strove to apply evidence-based quarantine. Despite the retrospective observation that quarantine may have been implemented too broadly, officials resisted ‘‘pressure to lengthen the quarantine period to 14 days [because] data did not support a quarantine period longer than 10 days’’ (Svoboda et al., 2004, p. 2360). After successfully containing SARS, public health authorities and legislators have focused attention on the need to renew and modernize public

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health legislation. Matthews et al. (2002) observe that ‘‘[l]aw is an essential tool for public health. Law sets the structure within which public health officials, regulators and private citizens act to protect the population’s health. Law can impede that process y or it can enhance it y’’ The crucial role of law in public health is highlighted by the national and provincial commissions of inquiry that have analyzed the Canadian SARS outbreak and recommended strategies to equip the public health system for the next outbreak. For example, the National Advisory Commission (2003) comments on a number of legal and ethical issues associated with the outbreak and in a discussion aptly titled ‘‘Legal Confusion,’’ the Ontario SARS Commission (2004) highlights legal ambiguities that hindered an effective outbreak response. These include concerns as to which level of government was ultimately in charge of the outbreak and the lawful authority of public health officials to take steps to control the disease. A key initiative underway in Canada is the development of a national Public Health Agency to be tasked with responsibilities related to infectious and chronic diseases and emergency planning and response (Public Health Agency Backgrounder, 2004). Canada’s first Chief Public Health Officer was appointed in late September 2004 (Public Health Agency News Release, 2004). Although details about the precise functions and authority of the Agency have not been announced, this body has potential to serve a key role in enhancing national readiness and coordinating future outbreak response. Indeed, it has been noted that ‘‘[a]t least one positive development might emerge from Canada’s recent outbreak of [SARS]: the creation of a national disease control centre similar to the Centers for Disease Control and Prevention (CDC) in the US’’ (Wharry, 2003). However, as provinces have primary constitutional authority over health, a federal agency will face legal limits on its ability to act unilaterally and will likely strive to collaborate, rather than dictate. Needed efforts to renew and modernize public health laws are also underway in Canada, with the federal government introducing an updated quarantine statute and continuing its work toward enacting comprehensive health protection legislation to replace existing laws governing food, drugs and hazardous products. Various provincial governments also are reviewing their public health laws. The SARS experience taught officials that legislation authorizing public health interventions like screening, isolation, quarantine and treatment must be sufficiently flexible to allow rapid response to a new infectious agent. For example, many public health statutes have schedules listing various infectious diseases for which coercive interventions are warranted. Such lists must be capable of swift amendment so that officials are not hamstrung in their ability to respond to a disease

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outbreak because a novel agent is not yet covered by public health legislation. Similarly, the SARS experience reveals that officials ought to have the legal authority to implement class quarantine orders as it may be unworkable to issue individual orders to thousands of people. The mandated length of quarantine must be based on the best available evidence in order to ensure that individual liberty is not restricted longer than necessary. Government officials who impose restrictive measures like quarantine should concurrently offer resources to mitigate individual hardships. Workers who cannot report to work because they are in quarantine face, at a minimum, income interruption and, at worst, job loss. Legal mechanisms may be necessary to protect employees’ jobs and compensate them for lost income during periods of quarantine. If the next disease is more virulent than SARS, then public health officials cannot afford the consequences of individuals breaking quarantine to go to work so they can buy groceries for their families. Outside Canada, numerous other jurisdictions are also engaged in processes of public health renewal. At the international level, the World Health Organization is revising its International Health Regulations, which some have criticized as ‘‘nonresponsive to the major challenges of emerging infectious diseases’’ (Gostin, 2004, p. 2623). In fall 2004, the European Union launched its Centre for Disease Prevention and Control in Stockholm, Sweden (European Public Health Alliance News Release, 2004). Canada’s new Public Health Agency emphasizes the need for international public health collaboration and intends to ‘‘play a leadership role with global partners, such as the World Health Organization and the U.S. Centers for Disease Control and Prevention and new European Centre for Disease Prevention and Control as well as other public health agencies’’ (Public Health Agency Backgrounder, 2004). The fact that our world is a global village is a boon to infectious agents driven to replicate and spread to as many hosts as possible. At the same time, international connectedness is crucial to the worldwide communication and cooperation necessary to mobilize an effective disease outbreak response. Looking back on SARS, it is worthwhile to keep in mind the following caution: ‘‘In the next global epidemic y we may not be so lucky y .Thus one of the major dangers arising from the effective control of SARS is complacency. Sentiments of the type ‘we have been successful once – we will be again’ may be far from the truth’’ (Anderson et al., 2004, p. 1104). Clearly, public health authorities at local, national and international levels must remain vigilant to respond to the next, novel infectious agent when – not if – it happens again. In responding to these threats through the use of powers such as quarantine, officials must likewise remain vigilant to comply with legal

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and ethical principles that require balancing public health protection with individual rights and liberties.

NOTE 1. For a comprehensive discussion of the SARS outbreak in Canada, see National Advisory Committee on SARS and Public Health (2003). Information in this summary is drawn largely from this report.

REFERENCES Altman, L. K. (2003). Lessons of AIDS, applied to SARS. The New York Times, May 6, p. Fl. Barbera, J., Macintyre, A., Gostin, L., Inglesby, T., O’Toole, 1., DeAtley, C., Tonat, K., & Layton, M. (2001). Large-scale quarantine following biological terrorism in the United States. Journal of the American Medical Association, 286(21), 2711–2717. Bernstein, M. (2003). SARS and ethics. Hospital Quarterly, 7(1), 38–40. Callahan, D., & Jennings, B. (2002). Ethics and public health: Forging a strong relationship. American Journal of Public Health, 92(2), 169–176. Canadian Public Health Association. (2003). Public health in the public interest: A contribution from the Canadian Public Health Association to the National Advisory Committee on SARS and public health. Online: http://www.cpha.ca/englishlsars/brief_e.pdf Centers for Disease Control and Prevention. (2003). Efficiency of quarantine during an epidemic of Severe Acute Respiratory Syndrome – Beijing, China, 2003. Morbidity and Mortality Weekly Report, 52(43), 1037–1040. Clemow, F. G. (1929). The origin of ‘‘quarantine’’. British Medical Journal, 1, 122–123. Diamond, B. (2003). SARS spreads new outlook on quarantine models. Nature Medicine, 9, 1441. Edelson, P. J. (2003). Quarantine and social inequity. Journal of the American Medical Association, 290(21), 2874. Ellacott, K. (2003). Behind the mask. Registered Nurses Journal, 15, 12–16. European Public Health Alliance News Release. (2004). European centre for disease prevention and control launched. Online: http://www.epha.org/a/1454 Fidler, D. P. (2000). International law and public health: Materials on and analysis of global health jurisprudence. Ardsley, NY: Transnational Publishers Inc. Garrett, L. (1994). The coming plague: Newly emerging diseases in a world out of balance. New York: Farrar, Strauss and Giroux. Gostin, L., & Zeigler, A. (1987). A review of AIDS-related legislative and regulatory policy in the United States. Law, Medicine and Health Care, 15, 5. Gostin, L. O. (2000). Public health law: Power, duty, restraint. Berkeley, CA: University of California Press. Gostin, L. O. (Ed.) (2002). Public health law and ethics: A reader. Berkeley, CA: University of California Press. Gostin, L. O. (2004). International infectious disease law: Revision of the World Health Organization’s international health regulations. Journal of the American Medical Association, 291(21), 2623–2627.

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Gostin, L. O., Bayer, R., & Fairchild, A. L. (2003). Ethical and legal challenges posed by Severe Acute Respiratory Syndrome: Implications for the control of severe infectious disease threats. Journal of the American Medical Association, 290(24), 3229–3237. Gostin, L. O., Sapsin, J. W., Teret, S. P., Burns, S., Mair, J. S., Hodge, J. G., & Vernick, J. S. (2002). The Model State Emergency Health Powers Act. Journal of the American Medical Association, 288(5), 622–628. Hansard. (2004). Speech by the Honourable Carolyn Bennett, Minister of State for Public Health. Online: http://www.parl.gc.c&37/3fparlbus/chambus/house/debates/0552004-05-14/ han0551250-E.htm Hansen, H., & Groce, N. (2003). Human immunodeficiency virus and quarantine in Cuba. Journal of the American Medical Association, 290, 2875. Hawryluck, L., Gold, W. L., Robinson, S., Pogorski, S., Galea, S., & Styra, R. (2004). SARS control and psychological effects of quarantine, Toronto, Canada. Emerging Infectious Diseases, 10(7), 1206–1212. Health Canada Fact Sheet. (2003). Quarantine Act and Regulations – SARS amendment. Online: http://www.hc-sc.gc.c&english/protectionlwarnings/sars/fact_sheet.html Health Canada News Release. (2004). Questions and answers updated. Quarantine Act. Online: http://www.hc-scgc.ca/english/medialreleases/2004/2004_23bk1.htm Iacobucci, E. (2003). Do SARS bailouts make sense? National Post, May 3, p. A24. Jackman, M. (2000). Constitutional jurisdiction over health in Canada. Health Law Journal, 8, 95–117. Kass, N. E. (2001). An ethics framework for public health. American Journal of Public Health, 91(11), l776–l782. Ksiazek, T. G., Erdman, D., Goldsmith, C. S., Zaki, S. R., Peret, T., Emery, S., Tong, S., Urbani, C., Comer, J. A., Lim, W., Rollin, P. E., Dowell, S. F., Ling, A.-E., Humphery, C. D., Shieh, W.-J., Guarner, J., Paddock, C. D., Rota, P., Fields, B., DeRisi, J., Yang, J.-Y., Cox, N., Hughes, J. M., LeDuc, J. W., Bellini, W. J., Anderson, L. J., and the SARS Working Group. (2003). A novel coronavirus associated with severe acute respiratory syndrome. New England Journal of Medicine, 348, 1953–1966. Mackay, B. (2003). SARS: ‘A domino effect through entire system’. Canadian Medical Association Journal, 168, 1308. Mandavalli, A. (2003). SARS epidemic unmasks age-old quarantine conundrum. Nature Medicine, 9(5), 487. Matthews, G. W., et al. (2002). Legal preparedness for bioterrorism. Journal of Law, Medicine & Ethics, 30(3), 52. Maunder, R. (2004). The experience of the 2003 SARS outbreak as a traumatic stress among frontline healthcare workers in Toronto: Lessons learned. Philosophical Transactions of the Royal Society of London B, 359, 1117–1125. Maunder, R., Hunter, J., Vincent, L., Bennett, J., Peladeau, N., Leszcz, M., Sadavoy, J., Verhaeghe, L. M., Steinberg, R., & Mazzulli, T. (2003). The immediate psychological and occupational impact of the 2003 SARS outbreak in a teaching hospital. Canadian Medical Association Journal, 168(10), 1245–1251. McBride, F. (2003). Communicating during a crisis – the SARS story at Mount Sinai hospital. Hospital Quarterly, 6(4), 51–52. Mitka, M. (2003). SARS thrusts quarantine into the limelight. Journal of the American Medical Association, 290(13), 1696–1698.

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National Advisory Committee on SARS and Public Health. (2003). Learning from SARS: Renewal of public health in Canada. A Report of the National Advisory Committee on SARS and Public Health. Health Canada, Ottawa. Online: http://www.hcsc.gc.ca/ english/protection/warningsfsars/learning.html Nickell, L. A., Crighton, J., Shawn Tracy, C., Al-Enazy, H., Bolaji, Y., Hanjrah, S., Hussain, A., Makhlouf, S., & Upshur, R. E. G. (2004). Psychosocial effects of SARS on hospital staff: Survey of a large tertiary care institution. Canadian Medical Association Journal, l70(5), 793–798. Ontario SARS Commission. (2004). Interim report on SARS and public health in Ontario. Online: http://www.heaith.gov.on.ca/english/public/pub/ministry_reports/campbell04.pdf Parmet, W. E. (2003). Quarantine redux: Bioterrorism, AIDS and the curtailment of individual liberty in the name of public health. Health Matrix, 13, 85. Peiris, J. S. M., et al. (2003). Clinical progression and viral load in a community outbreak of coronavirus-associated SARS pneumonia: A prospective study. Lancet, 361, 1767–1772. Public Health Agency Backgrounder. (2004). The public health agency of Canada. Online: http://www.phac-aspc.gc.ca/media/nr-rp/phac_e.html Public Health Agency News Release. (2004). Government of Canada appoints first chief public health officer to head public health agency of Canada. Online: http://www.phacaspc. gc.ca/media/nr-rp/phac_nr_e.html Richards, E. P., & Rathbun, K. C. (2004). Making state public health laws work for SARS outbreaks. Emerging Infectious Diseases. Sehdev, P. S. (2002). The origin of quarantine. Clinical Infectious Diseases, 35, 1071–1072. Silverman, A., Simor, A., & Loufty, M. (2004). Toronto emergency medical services and SARS. Letter to the editor. Emerging Infectious Diseases, 10(9), 1688–1689. Singer, P. A., Benatar, S. R., Bernstein, M., Daar, A. S., Dickens, B. M., MacRae, S. K., Uphsur, R. E. G., Wright, L., & Zlotnik, S. R. (2003). Ethics and SARS: Lessons from Toronto. British Medical Journal, 327, 1342–1344. Speakman, J. (2003). Quarantine in Severe Acute Respiratory Syndrome (SARS) and other emerging infectious diseases. Journal of Law, Medicine and Ethics ðSpecial SupplementÞ, 31(4), 63–64. Straus, S. E., Wilson, K., Rambaldini, G., Rath, D., Lin, Y., Gold, W. L., & Kapral, M. K. (2004). Severe Acute Respiratory Syndrome and its impact on professionalism: Qualitative study of physicians’ behaviour during an emerging healthcare crisis. British Medical Journal, 329, 83. Svoboda, T., Henry, B., Shulman, L., Kennedy, E., Rea, E., Ng, W., Wallington, T., Yaffe, B., Gournis, E., Vincencio, E., Basrur, S., & Glazier, R. (2004). Public health measures to control the spread of the Severe Acute Respiratory Syndrome during the outbreak in Toronto. New England Journal of Medicine, 350(23), 2352–2361. Tuller, D. (2003). If SARS hits U.S., quarantine could too. New York Times. December 9, p. Fl. Uphsur, R. E. (2002). Principles for the justification of public health intervention. Canadian Journal of Public Health, 93, 101–103. Wharry, S. (2003). Will SARS crisis give Canada its own CDC? Canadian Medical Association Journal, l68(12), 1581. Wynn, F., & Peter, E. (2003). Nurses and quarantine: Reflections upon the SARS crisis in Toronto. Nursing Inquiry, 10(4), 207–208.

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Legislation Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K.), 1982, c. 11. Constitution Act 1867 (U.K.), 30 & 31 Vict., c. 3, reprinted in R.S.C. 1985, App. II, No. 5. Emergency Management Act, K.S.O. 1990, c. E.9. Health Protection and Promotion Act, R.S.O. 1990, c. H.7. Ministry of Health Appeal and Review Boards Act, SO. 1998, c. 18. Quarantine Act, R.S.C. 1985, c. Q-l. Quarantine Act Regulations, C.R.C., c. 1368.

Case Law Blencoe v. British Columbia (Human Rights Commission), [2000] 2 S.C.R. 307. Canadian AIDS Society v. Ontario (1995), 25 O.K. (3d) 388 (Gen. Div.). New Brunswick v. JG., [1999] 13 5CR. 46. R. v. Oakes, [1986] 1 5CR. 103. RJR -MacDonald Inc. v. Canada (Attorney General), [1995] 3 5CR. 199. Toronto (City, Medical Officer of Health) v. Deakin, [2002] O.J. No. 2777 (Ct. Just.) (QL).

CHAPTER 4 CAN MANDATORY VACCINATION OF HEALTH CARE PROFESSIONALS DURING AN INFLUENZA PANDEMIC EVER BE JUSTIFIED? Jaro Kotalik ABSTRACT Objectives: To discuss whether, during an influenza pandemic, public health authorities could be ethically justified in implementing a mandatory vaccination program directed at health care professionals. Methods: Ethical analysis is carried out by examining arguments that can be made in favor or against such a mandatory measure and by seeking a reasonably balanced position between them. Arguments under consideration are based on the duties of health professionals and public health authorities, the consequences of their actions and on other ethical principles. The importance of relevant empirical data is stressed without any attempt to review or analyze them systematically. Results: Mandatory vaccination of some health care professionals during a serious pandemic of influenza can be justified, but only under certain limited conditions. Conclusions: In the throes of an influenza pandemic, health care professionals (and to a variable degree, other health care workers) have an Ethics and Epidemics Advances in Bioethics, Volume 9, 69–89 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09004-2

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ethical obligation to accept influenza vaccination if it is reasonably safe and effective. The ethical responsibility of public health authorities is to limit the impact of a pandemic on the population by all reasonable means, which clearly includes the appropriate use of vaccine. Consequently, the vaccination of health care staff can be made mandatory under certain conditions. However, a critical objection to this conclusion, which upholds that a voluntary vaccination program (an ethically much less problematic intervention) is just as effective, needs to be addressed.

1. INTRODUCTION Influenza A viruses are unique in their ability to cause not only seasonal yearly outbreaks, but also periodic global epidemics – often called pandemics. In the past century, there have been three pandemics (1918, 1957 and 1968), one of which – the infamous ‘‘Spanish flu’’ of 1918 – was responsible for 450,000 deaths in the US and 50–100 million worldwide (Last, 1986; Potter, 1998; EURO ELSAV, 2002; Osterholm, 2005). A pandemic will likely occur again when the virus undergoes a major change, a so-called antigenic shift, and this will make the whole population of the world, even those who acquired immunity from annual outbreaks, highly susceptible. Although unable to predict the exact time or severity of the next pandemic, most experts agree that it may occur at any time (Dowdle, 2001). The United States Centers for Disease Control and Prevention estimate that in the US, when it will occur, 40–100 million persons will become ill, 300,000–800,000 persons will be hospitalized, and 88,000–300,000 persons will die (Meltzer, Cox, & Fukuda, 2000). A more recent estimate, based on the probability that the current avian flu strain H5NI could lead to a pandemic that would mimic the one of 1918, puts the possible death toll to 1.7 million in the United States alone (Osterholm, 2005). It is to be expected that illnesses and deaths, combined with the population’s reaction to them, will cause a major disruption to social and economic life as well as to national and international infrastructures. In anticipation of and in response to a possible pandemic, many countries in the world have been developing coordinated strategies that represent major, complex, public policies that in turn will affect the life of virtually every citizen. Unavoidably, these plans incorporate many ethical values and preferences, refer to rights and responsibilities and create expectations and obligations. Many ethical issues that emerge from pandemic plans deserve urgent attention (Kotalik, 2005; Tracy, Upshur, & Daar, 2005). This paper

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will discuss only one of the many issues. Albeit a rather narrow topic, it is one which, hopefully, will provide a window into some of the moral complexities of public health interventions designed to control a pandemic and/ or outbreaks of infectious diseases in general. One of the effects of an influenza pandemic is that it will create enormous demands on health care systems and health care workers and will do so for a protracted period, perhaps 12–24 months. Not only will there be an unprecedented number of sick that require care, there will also be fewer health care workers available to take care of them because health care workers themselves – when caring for the infected – are at a higher risk of infection, illness and death than the general population. Understandably, a major concern addressed in pandemic plans is to find ways to protect health care workers and to make them available for service. There appears to be a consensus that the most useful tool to keep people well during a pandemic is an effective vaccine – if one can be successfully developed (Ghendon, 1994). But, production of a vaccine can only start after the pandemic virus is identified. This is a slow and complex process, so that the first batches will likely be available only four to six months after the new virus is isolated. Because, in the early stages of a pandemic, the influenza vaccine will be in short supply, a regular feature of pandemic plans is a prioritization scheme. The pandemic plans of Canada (Health Canada, 2004), the US (United States Department of Health and Human Services, 2004) and the UK (Departments, 2005) all have identified health care workers as the highest priority group. There is a strong probability that, if the pandemic virus is proven to be highly lethal, everyone who will be given an opportunity to receive the new vaccine will gladly accept it. However, if the new virus is not likely to cause deaths to healthy people of middle age, or if the efficacy or safety of the vaccine is suspicious, then health care workers may not embrace the idea of a preventive vaccination. Yet, in such situations, there may be strong epidemiological and operational reasons to make it desirable for all staff members that are in patient contact to be immunized. Health care planners need to be concerned about this type of situation because, as it stands, the acceptance of yearly vaccination against influenza among health care professionals and other health care workers has been chronically low even if vaccination is highly recommended by authorities. It was estimated, at a recent meeting of the US Advisory Committee on Immunization Practices, that only 36% of hospital workers are vaccinated each year against influenza (Fox, 2004). The vaccination rate of Canadian health care workers during the 2000–2001 influenza season was reported to be 55% (Public Health Agency of Canada, 2001). Will health care workers

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respond differently during a pandemic and will they all be voluntarily vaccinated? We do not know. But, we do know that an unwillingness to accept vaccination will add to the already worrisome ‘‘ethical barriers to preparedness’’ (Wynia, 2003). To address this unpredictable factor, pandemic planners in United States and Canada are cautiously looking into the possibility of using a law to make such a vaccination compulsory. Typically, the United States’ guide for local- and state-wide pandemic planning poses this question: ‘‘Does State law allow for ‘mandatory’ vaccination of certain groups if vaccination of such groups is viewed by State public health officials as being ‘essential’ for public safety?’’ (United States Department of Health and Human Services, 2004). The question in the title of this paper, therefore, has a practical significance for the current development of public health policies. But, it is also of theoretical interest because it can serve as an opportunity to examine the ethical acceptability of compulsory measures in unusual but very serious health situations. This issue is to be seen against the background of a larger ongoing debate that is taking place in most countries between those who promote legally mandatory vaccinations for various infectious diseases and those who insist that vaccination programs remain voluntary (Bradley, 1999; EURO ELSAV, 2002). Given that this is not a legal paper, and accepting the premise that ‘‘(t)he law relating to public health should be based on ethical values’’ (Gostin, 2002), I will focus on the ethical acceptability of mandatory vaccination of health care professionals. I will first examine some principal arguments suggesting that health care professionals have a moral obligation to accept vaccination and that public health authorities have an ethical obligation to assure that these people are vaccinated. I will consider if these arguments can ever be used to justify the imposing of vaccination by law and examine both the condition for such an imposition and the limits of enforcement. Then, I will discuss arguments that assert that vaccination during a pandemic must remain voluntary. Finally, I will make some general observations about these arguments, attempt to create a balanced position and provide a tentative answer to the question posed in the title of this paper.

2. ARGUMENTS IN FAVOR OF MANDATORY VACCINATION To defend mandatory vaccination, we need to assert that both health care professionals and public health care authorities have an ethical obligation to assure that such vaccination takes place and that a mandatory approach is

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the only way to assure that this obligation is fulfilled. There are several steps required toward such a conclusion. 2.1. Professionalism and the Obligation to Serve The first argument that upholds that health care workers have a strong ethical obligation to accept influenza vaccination is grounded in the notion of professionalism, and it is simply this: at the time of a flu pandemic, health care workers have a strong moral obligation to make themselves available to serve; this obligation in turn creates an obligation to take all the necessary measures to remain fit and to avoid illness, including the acceptance of vaccination. Three points support this argument. Firstly, to be a professional means to be someone who professes. Health professionals explicitly make such an act of profession when they are accepting an academic degree or graduating, but also, implicitly, on a daily basis, in the community or organization where they accept patients. They are professing, that is, declaring their preparedness and readiness to serve the needs of others (Pellegrino & Thomasma, 1988). This duty, which every health care professional (in the strong sense of the word ‘‘professional’’ as advocated by Pellegrino and others) has taken on, is proportionate to the need for his or her services. Secondly, it appears that a major flu pandemic will be a public health emergency like no other. The figures provided above indicate that, except for a major war, no other foreseeable incident would cause a comparable amount of suffering, death and social disruption. But, influenza pandemics are infrequent, surfacing about every 30 years or so. Therefore, a health care worker will likely encounter this situation only once or twice in his or her professional career. Such a rare, but extremely severe situation calls for a meticulous adherence to professional duties. The need for services will hardly ever be greater than in a pandemic situation, so, if there was ever a time to demonstrate professionalism and a willingness to put the needs of others first, then it is at the time of a pandemic. The obligation of medical professionals to tend to the sick during epidemics, in spite of the increased risks, is also argued by Clark, McCullough and Wynia elsewhere in this volume. Thirdly, in order to be able to serve, the health care professional has an ongoing responsibility to take care of oneself by choice of lifestyle, and to adopt measures that promote one’s physical, mental and spiritual health. Vaccination during a normal influenza season was found – at least in some studies (Pachucki et al., 1989) – to reduce employee absenteeism, so, it would very likely also reduce sick time during a pandemic. Also, a meta-analysis

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of numerous clinical trials indicates that influenza vaccination is moderately effective in preventing influenza in the general population (Langley & Faughnan, 2004). Hence, if vaccination is available, then the health care worker has an obligation to receive it, unless it is medically contraindicated. Another way to formulate this obligation would be to say that the obligation arises from an unwritten social contract between health professionals and society, which requires that professionals keep themselves always ready to serve. 2.2. Nonmaleficence and Obligation not to Infect Others The second argument is based on the principle of nonmaleficence: do not cause unnecessary harm or expose patients to avoidable risks. Unvaccinated health care workers pose a risk to others and could harm the very patients they care for, thus violating this principle. If vaccination minimizes a risk to patients, then health care workers have an obligation to accept it. The ‘‘do no harm’’ principle is usually applied only to interventions that are carried out by health care workers, yet, it is obviously also relevant in situations where health care workers themselves can become instruments of harm. It has been suggested that everyone has a moral obligation not to transmit a communicable disease, if one can avoid it, even for such mild conditions as a common cold (Harris & Holm, 1995). If there is such an obligation, then it will have an even stronger moral claim on health care staff than on other people (Rea & Upshur, 2001). In order for this argument be valid, it needs to be shown that front line health care professionals who are not vaccinated will very likely get infected with the virus, transfer the virus to their patients and cause illnesses or deaths of patients that would not otherwise occur. It has been difficult to obtain such evidence for the annual influenza seasonal infections, but most observers feel that such evidence is now indeed available, and that the transfer of an influenza virus from staff to patients is not just a theoretical risk. A recent report of the National Foundation for Infectious Diseases has identified this problem and has recorded a case study from a pediatric service (Fox, 2004). Nursing home outbreaks have been traced to infected staff (Coles, Balzano, & Morse, 1992). A jury in a Coroner’s Inquest in Ontario, Canada determined that staff had played a key role in an outbreak of influenza leading to deaths in a long-term care facility, and it called for mandatory vaccination (Marsh Canada Limited, 1999). There are several studies suggesting that if health care workers in long-term care facilities do get vaccinated, the overall death rate of residents in these facilities during an influenza season is reduced (Patriarca et al.,

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1986; Potter et al., 1997; Carman et al., 2000). As a result, the American and Canadian advisory committees on immunization practices and the American Academy of Pediatrics recommend annual influenza vaccination for health care workers (McMillan, 2000). Researchers have also found that about a third of front line health care workers develop symptoms during an influenza season and yet three-quarters of them do not stay home from work. It appears that peer pressure in health care institutions persuades staff members to keep on working unless an illness becomes seriously incapacitating. This behavior would be commendable if it did not further increase the chances of patients getting exposed to the virus (Herwaldt, 1993). The refusal to be vaccinated would be particularly ethically troublesome during a pandemic if the vaccine were made preferentially available to health care workers but not to the general population from which patients come. Immunization against hepatitis B has been identified to be an ethical obligation of health care providers, based on a duty not to expose patients to unacceptable risks (College of Physicians and Surgeons of Ontario, 1998) and the same duty could be postulated to exist during an influenza pandemic. To summarize, it could be argued, on the basis of this data, that health care workers who reject available vaccination during the regular annual influenza outbreaks are transgressing the important ethical principle of nonmaleficence, and that this would be the case also during a pandemic. 2.3. Patient’s Vulnerability The third argument, not entirely independent, but supportive of the previous arguments, suggests that the obligation of health care professionals to receive vaccinations during a pandemic stems from a recognition of the patients’ vulnerability on one hand and professionals’ accountability on the other. As such, it should be included among the ethically relevant subject matters that health care professionals are accountable to patients, employers, professions and society (Emanuel, 1996). Getting infected from a professional could represent a major burden or risk of death to a vulnerable patient, yet the burden of vaccination on a professional is very slight because the procedure is rapid and has only minimal side effects (Rea & Upshur, 2001). 2.4. Responsibility of Public Health Authorities So far, I have addressed the obligation of health care professionals, but the fourth argument is based on the ethical obligations of public health authorities. Their role, stated most broadly, is to promote and preserve the

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good health of all citizens, balancing the rights of individuals with the needs of communities (Last, 1986). Historically, the prevention and control of outbreaks of infectious diseases have been among the first tasks in the purview of public health services and still remains an important contribution to public well-being. Failing to control an epidemic, if an opportunity to do so were available, means failing an ethical obligation. The desire not to interfere with any personal liberties is not sufficient justification to avoid taking action. Hence, if epidemiological knowledge concerning an influenza pandemic provides a strong indication that the burden to the population could be reduced by vaccination of health care professionals, then it can be argued that public health service has an ethical obligation to take all reasonable measures necessary to vaccinate this group. 2.5. Legal Enforcement If indeed there is a strong moral obligation for health care workers to accept vaccination, and if public health authorities have a moral obligation to ensure that a vaccination will be delivered as these arguments suggest, we must ask if there is any justification for passing a law that will allow making vaccination mandatory. This raises the complex issue of the relationship between ethics and law that cannot be elaborated upon here. It is also not possible to discuss the long history of compulsory vaccination practices that in North America go back more than a hundred years. It was in 1905, that the US Supreme Court examined a state-enacted, mandatory vaccination against smallpox, and held that the law was a legitimate exercise of the State’s ‘‘police power’’ to protect the health of its citizens (Gostin, 2000; Welborn, 2005). Since that time, this power of the state has been challenged many times or occasionally reduced, yet it has never disappeared (Parmet, Goodman, & Farber, 2005). The possibility of bioterrorism and new infectious diseases further advanced this cause, and mandatory vaccination is a measure recommended to all American states in the Model State Emergency Health Powers Act (Gostin et al., 2002). During a pandemic situation, it can be argued that public health authorities should have available to them a legal tool that can be used if it is foreseen that non-compliance with this pressing moral obligation to accept vaccination would likely cause severe or irreparable damage to society, such as deaths that could otherwise be avoided. A support for the conclusion that legal enforcement is acceptable presupposes that influenza vaccination has a highly favorable harm/benefit ratio. Indeed, the inoculation of an individual is a very minor procedure,

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with slight discomfort and only remote risks of serious side effects. Even if it were administered against a person’s wishes, this does not represent a wreckage of some fundamental interests of that person for the benefit of society (Gostin, 2001). On other hand, the benefits to society (and also to the vaccinated person) could be major, especially if the virus that causes the pandemic is highly contagious and frequently kills. Another way to examine the issue of the acceptability of legal enforcement of vaccination is to consider the status of social free-riding. This term refers to the situation when a large majority of health professionals voluntarily collaborate in an effort that is beneficial for society, but a few are trying to get a free ride, that is, not participating in order not to inconvenience themselves, yet expecting to be well regarded and receive the same benefits or privileges as the participants. Such behavior is contrary to ordinary moral intuition. It is not defensible in common morality nor by deontological systems, and is problematic even in some interpretations of act-utilitarianism (Kornegay, 2004). If refusal of vaccination is comparable to free-riding, which is morally indefensible, then legal steps to discourage such behavior seems warranted. 2.6. Objections to the above Arguments However, a number of things could be said to weaken the above arguments favoring mandatory vaccination: (a) The influenza pandemic will not be a unique event and not likely that severe; therefore, no extraordinary moral duties will be generated and no extraordinary measures should be taken. Experts tend to exaggerate the risk in order to draw attention and resources to the programs in which they are involved. (b) Public health officials are exaggerating the efficacy of a vaccination to alter the course of a pandemic. Some critics maintain that the efficacy of the annual influenza vaccination of health care staff is at best only marginal (Nicholson, 2000; Demicheli, 2001), and vaccination during a pandemic has never been scientifically tested, mainly because in previous pandemics there was never enough vaccine available. Pandemic plans of Canada and US do not provide any indication as to what effectiveness could be achieved during a pandemic, even if a theoretical impact of vaccination was incorporated into some calculation of economic consequences of pandemic (Meltzer, Cox, & Fukudo, 2000). Under those circumstances the vaccine does not warrant any special moral or legal considerations.

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(c) A vaccine manufactured for a pandemic is not likely to be entirely safe, and therefore, each potential recipient should be allowed to make a judgment based on personal assessment of risks and benefits. Drug research is now market driven, and a declaration by any party that a new vaccine is safe cannot be trusted. ‘‘Transparency has become a substitute for trust’’ (Pope, 2003) and the processes of manufacturing and testing vaccines are not currently transparent. There will not be sufficient time in a pandemic situation for proper clinical trials and, as a result, priority recipients, like health care professionals, will in fact serve unwittingly as research subjects. New batches of vaccine sometimes have new side effects that cannot be anticipated, such as the oculorespiratory syndrome caused by a vaccination in 2001 (Skowronski, Bjornson, Husain, Metzger, & Scheifele, 2004). An unexpected risk of vaccination can sometimes emerge only many years later, as was the case with the virus-contaminated polio vaccines (McCarthy, 2002; Dang-Tan, Mahmud, Puntoni, & Franco, 2004). Reporting adverse events is not mandatory and these events are likely underreported and underestimated. (d) There will be a scarcity of vaccine during a pandemic, and not even all those who desire it will be able to receive it. Therefore, mandatory vaccination will be unnecessary. (e) An infected health care worker will not be a significant source of infection because during a pandemic the virus will be ubiquitous. (f) Those health professionals who do not wish to be vaccinated could be offered prolonged prophylactic therapy with antiviral drugs, with benefits similar to vaccination. (g) Health care professionals will not be infecting their patients if they use infection control procedures and if management policies do not effectively prevent health care workers from taking time off when ill (Diodati, 2002). (h) The notion of professionalism as used in some of the above arguments is outdated; contemporary health care professionals do not have more obligations than workers in other sectors to guard their own health or avoid infecting others. It should be noted that all of these objections except ‘‘(h)’’ attempt to undermine my earlier arguments by rejecting some factual assumptions about an influenza pandemic and vaccination or by interjecting some additional facts. I will return to this problem in the final section of this paper.

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3. ARGUMENTS AGAINST MANDATORY VACCINATION 3.1. Principle of Autonomy The first and the most obvious argument against mandatory vaccination is based on the principle of respect for autonomy. We can say that mandatory vaccination of health care professionals would be a blatant and large-scale transgression of the most important principle of health care ethics. It would represent a severe and unacceptable affront to the personal liberty and autonomy of a whole class of citizens. When a health care professional is facing a sharp end of a needle, he or she is a patient and deserves all the ethical considerations given to patients. Vaccination without consent would be an attempted invasion of bodily integrity and as such, completely out of line with current standards of patient care. Treating health care professionals in this way would simply be offensive. In support of this argument could be cited voluminous literature; the defense of patients’ self-determination has been a prevailing concern of bioethics for at least the first two decades of the history of this discipline since the term ‘‘bioethics’’ was coined in 1970s (Beauchamp & Childress, 2001). While the position of this principle is perhaps less dominant, there are still strong voices suggesting that this principle is the most important one, ‘‘the first among equals’’ (Gillon, 2003). Even those theorists who are critical of the principle of respect for autonomy as a centerpiece of ‘‘principlism’’ agree that it is necessary to protect the patients’ self-determination. They would likely support the prohibition of mandatory vaccination along the same ethical lines as breaking a rule like ‘‘do not deprive of freedom’’ (Gert, Culver, & Clouser, 1997). 3.2. Principle of Least Infringement The second argument against mandatory vaccination is based on the principle of least infringement, which states that a public health intervention that infringes on liberty, privacy, autonomy and justice is permissible only if no other intervention, which is as effective but which infringes less on these moral claims, is possible (Childress et al., 2002). It is argued that mandatory vaccination is unacceptable because it fails to respect the principle of least infringement. There is another intervention, voluntary vaccination, which would achieve the goal of mandatory vaccination with less infringement on individual rights. The proponent of this argument will have to admit that the equivalency of mandatory and voluntary vaccination in terms of

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outcome is not proven; however, it is also not proven that mandatory vaccination of professionals would achieve a higher success rate than voluntary vaccination. In the absence of such evidence, one way or another, the least infringing and least burdensome intervention must be preferred. This position can be supported by numerous studies that indicate that undue concern about efficiency, adverse effects, misinformation, barriers and disincentives to vaccination were factors that played a role in the current low rate of acceptance of influenza vaccination among health care staff. The same and other studies also reported an improvement of vaccination rates among health care workers if some of these problems were addressed (Harbath, Siegrist, Schira, Wunderli, & Pittet, 1998; Beguin, Boland, & Ninane, 1989; Girasek, 1990; Eisenfeld et al., 1994; Nichol & Hauge, 1997; Tamblyn, 1997; Carman et al., 2000; Habib, Rishpon, & Rubin, 2000). Generally, all these interventions to increase vaccination rates were a part of a research study and they were not permanent, system wide or comprehensive. To buttress this argument, one can point to the fact that health care professionals have not yet recognized that vaccination acceptance is a matter of professional ethics. The ethical responsibilities of health care workers arising out of the availability of influenza vaccination (or other vaccinations) are not referred to by the codes of medical ethics in the US (American Medical Association, 2001) or in Canada (Canadian Medical Association, 2005). With few exceptions, the ethical relevance of vaccination has not been discussed in medical literature (Herwaldt, 1993; Rea & Upshur, 2001). As a result, health care workers do not currently have an ethical motivation to be vaccinated. If all issues that hinder the acceptance of voluntary vaccination are properly dealt with, then, the argument goes, a voluntary vaccination program will be just as effective as a mandatory one in assuring that almost all workers, at least those without medical contraindications, will be vaccinated. If this is the case, then the only ethically acceptable vaccination program is a voluntary one because it does not infringe on health care workers’ personal liberty and autonomy. 3.3. Utilitarian Objections The third argument against mandatory vaccination is based on utilitarian reasoning, and asserts that when the negative effects of compulsion are counted in, there will be no overall benefit to mandatory vaccination over voluntary vaccination. Firstly, such a forced measure would give the message that in our society, personal autonomy is really not that important; it could encourage health care workers themselves to impose unwanted

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interventions on their patients. Such an approach would erode the respect for autonomy in health care in general. In addition, such forceful measures would demoralize health care workers and make them less effective caregivers. Coercive measures used on emergency physicians in Quebec and hospital nurses in Ontario were strongly resisted by the respective professions and thought to have undesirable side effects (Editorial, 2002; Pengelley & Whary, 2002). In addition, the mandatory approach would require surveillance and enforcement that would increase the cost of pandemic response measures and interfere with the provision of patient care. 3.4. Principle of Justice The fourth argument against mandatory vaccination is based on the principle of justice. It declares that it would be unjust to single out health care professionals for mandatory vaccination if people in other groups are not treated in the same fashion. It can be argued that, for example, hairdressers and waiters are in just as much personal contact with large numbers of people who could be infected by them, and that firefighters and policemen, for example, are just as essential to the well-being of society as health care professionals. Consequently, there is not a sufficient morally significant difference between health care workers and many other categories of workers to justify treating health professionals differently. 3.5. Safety and Appropriateness The final argument is a historical one, which states that public health services, at least in North America, have a poor record of making the right decision about the nature of threat to the population and the appropriateness of mass vaccination. In recent memory, two major national vaccination programs were launched as an emergency measure, yet eventually, these programs turned out to be unnecessary and risky. In 1976, when a new strain of influenza with pandemic capacity was detected, 46 million Americans and several million Canadians, on the urging of their governments, accepted emergency vaccination. But the vaccination campaign came to a premature halt because of the vaccine’s side effects. On the final count, over 500 cases of Guillain-Barre´ syndrome and 32 deaths were attributed in the US to this intervention. In addition, the new virus was never detected outside of the initial isolated outbreak, so there was no pandemic (Morrison, Liston, & Abbott, 1976; Bernstein, 1981). In 2002, the US administration announced a smallpox vaccination plan to protect Americans

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because of the threat of a terrorist attack. It expected to administer 450,000 doses of vaccine to health workers who would be thus prepared to care for patients infected with the virus. However, the plan ran into opposition. Its acceptance further dropped after reports of unexpected heart problems possibly associated with the vaccine, and after the threat of terrorists’ attacks did not materialize. At the end of the year, the program succeeded in vaccinating only about 10% of the target population and it came to an end (Manning, 2003; Matthews, Murphy, Lopez, & Orenstein, 2003). An argument can be made that the harm and burden of these vaccination programs, which in retrospect were unnecessary, were reduced because the programs were voluntary. If these programs would have been implemented as mandatory measures, the burden would have been more severe and the moral culpability of the experts and decision-makers would be much greater. Hence, mass vaccination programs should remain voluntary. 3.6. Objections to above Arguments A number of objections can be raised against the validity of the above arguments: (a) The influenza pandemic is such an extraordinarily severe threat to our society, and its control is so crucial that, if there is a single situation when public interest should prevail against all personal interest and autonomy, this is the situation. (b) Because ‘‘good health is a form of liberty for all peoples’’ (EURO ELSAV, 2002), mandatory vaccination will not be an affront to personal liberty if it significantly enhances the health of society. The autonomy of an individual is expressed foremost by a person’s free decision to be a member of a particular community and by freedom to leave it. But as long as a person remains a member of a community, the social contract binds him to accept obligations requested by society together with benefits provided by that society (EURO ELSAV, 2002). (c) Health care professionals, indeed, are a special category of the population, with manifestly different rights and obligations than other workers in personal services. Therefore, they can be treated differently than other groups, and this includes having vaccination imposed on them, without committing an injustice. (d) The principle of the least infringement does not apply because mandatory and voluntary vaccination programs are not equally efficient at achieving the goal of vaccination. At least, there is no proof that a voluntary

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vaccination program, even if could be made more acceptable, would ever come close to recruiting 100% of health care workers. In the absence of such proof, and given the gravity of the threat from influenza, we have to err on the side of caution and implement mandatory vaccination.

4. ADDITIONAL OBSERVATIONS When we survey various positions on mandatory vaccination, it becomes apparent that there is a close and critical relationship between empirical data on the one hand and normative positions on the other. The following two points attempt to address this conundrum. 4.1. The Need to Reduce Uncertainty Many of these contradictory arguments and objections can be raised only because of the uncertainty about empirical facts related to influenza, influenza pandemic and vaccination. I did not attempt to provide a comprehensive review and interpretation of existing empirical data. When I refer to empirical information in this paper, it is mainly to show how critical it is to have full and correct data in order to reach a reasoned ethical assessment. Issues of ethics and policy, of course, cannot be settled just by clarifying empirical data. However, acceptance of a certain set of empirical data is an important step that makes it possible to concentrate on discussion of values, interests, rights, duties and utility when looking for ethically appropriate public health measures. It is understood that it will be impossible to achieve complete certainty about many factors, be it the benefits and burdens of vaccination or the magnitude of future pandemics. Public policy makers have to act in spite of a residual, perhaps even major, uncertainty (Last, 1986; Dare, 1998). But assessment of the degree of the probability of various scenarios and the reduction of uncertainty as much as science permits are extremely important tasks from an ethics and public health law perspective (Gerberding, 2002). 4.2. Importance of Empirical Data Concerning annual vaccination, it was stated ‘‘(d)espite the enormous burden from influenza, the efficacy, effectiveness and cost benefit of immunizing health care workers has been little studied’’ (Nicholson, 2000). Similarly, it has to be noted that the national influenza pandemic plans of Canada, the United States and the United Kingdom do not provide (or refer a reader to)

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the kind of empirical data that would make it possible to assess the ethical acceptability of some of the measures that are proposed by these plans, vaccination being one of them. Particularly, these plans do not provide any estimates of staff shortages likely to be caused by influenza, of the benefits of vaccination in the reduction of absenteeism, of the benefits of diminishing an infection transfer from staff to patients, of the burdens and risks of vaccination and so on. Yet, any proposed public health intervention needs to have a significant probability of benefits and a strong likelihood of a positive risk/benefit ratio in order to be ethically acceptable. This will be true for measures that will be offered to the population for voluntary participation; for compulsory measures, the standard has to be even higher.

5. CONCLUSIONS With these reservations, how can we reply to the question in the title of this paper? It seems that the arguments in favor of mandatory vaccination do not trump the arguments that are against mandatory vaccination, and vice versa. In such a situation, each of us is likely to make a personal choice based on our deepest values. Those who favor an individualistic interpretation of autonomy and strongly believe in the dominant role of self-determination as a moral foundation of a free society will likely oppose mandatory measures. My personal preference is a society ‘‘which not only promotes individual rights but accepts collective responsibility to live a collaborative life which promotes autonomy’’ (Doucet & Melchin, 1995), and if necessary, I am prepared to prescribe the collaboration in communal interest (Tauber, 2002). Hence, I suggest that on balance, the arguments presented in favor of mandatory vaccination are more convincing than those against the mandatory approach, providing certain assumptions about pandemic and vaccination are indeed correct. Of all the objections against this position, I believe the weightiest one is the assertion that if a voluntary vaccination program for health care workers were fully implemented, it would be just as effective as a mandatory program, without the drawbacks of compulsion and enforcement. Is it possible then, to arrive at an objective position on the question of mandatory vaccination that could lead to the formation of a legitimate public policy? I think so. This can be achieved by constructing a position that respects all reasonable arguments and gives each of them some role in defining the limits or conditions of the mandatory measure.

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One way by which this could be achieved is to suggest that, in the event of an influenza pandemic, mandatory vaccination of health care workers is ethically justified only if and when all of the following conditions are met with a reasonable degree of probability: (a) The pandemic appears to be so serious that staff absences due to illness would compromise care and increase morbidity. (b) The pandemic influenza vaccine is effective in terms of preventing clinical illness and reducing absences from the workplace. (c) The pandemic influenza vaccine is safe, with the understanding that the urgency of the situation permits only a limited amount of time for testing. (d) The mandatory vaccination program is proven to produce a significantly higher participation rate than a voluntary program, and this difference is important in meeting essential objectives of the vaccination program. The justification of the mandatory program will be further strengthened if, (e) Under conditions of pandemic, unvaccinated health care workers will represent a significant risk to their patients. In addition, the justification of a mandatory vaccination would have to be presented in a manner that allows for scrutiny of the population affected by the measure, and steps would have to be taken to apply the mandatory vaccination in a consistent way (Childress et al., 2002). The meaning of the term ‘‘reasonable degree of probability’’ in this context would have to refer not only to the opinion of experts but to the views of the population. The above proposal does not claim to be the only possible way of striking the right balance. There are probably other ways by which the conditions for mandatory vaccination could be set that would take into consideration the objections without allowing the objections to defeat the purpose of mandatory vaccination. Finally, I would like to comment on the practical implication of the above appraisal of arguments. Given the difficulties to ethically defend and to sensibly implement mandatory vaccination, it would be best if mandatory vaccination could be avoided and its goals achieved by voluntary participation. An important step in this direction is to initiate, among health care professionals, thorough discussions about an influenza pandemic in general and about the ethical aspects of vaccination as well as other personal measures that could minimize the impact of the pandemic. Hopefully, if we have enough time before the pandemic arrives, this effort can lead to the development of such a high level of moral commitment of health professionals to the response measures that mandatory vaccination will be found unnecessary.

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ACKNOWLEDGMENTS I wish to express my sincere thanks to Dr. Renzo Pegoraro, President of Fondazione Lanza, Padova, Italy, as well as his colleagues and staff for providing me with the opportunity to work in such a stimulating and caring environment during my two months stay as a visiting scholar. I am also thankful to my wife, Louisa Pedri, MA, who edited my text and helped me greatly by many thoughtful suggestions during our discussions of the subject.

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Kornegay, R. J. (2004). Hare’s utilitarianism and the free-rider problem. Dialogue, XLIII, 419–442. Kotalik, J. F. (2005). Preparing for an influenza pandemic: Ethical issues. Bioethics, 19(4), 422–431. Langley, J. M., & Faughnan, M. E. (2004). Prevention of influenza in the general population. Canadian Medical Association Journal, 171, 1213–1222. Last, J. M. (1986). Ethics and public health policy. Maxcy-Rosenau public health and preventive medicine. Norwalk, CT: Appleton-Century Crofts. Manning, A. (2003). Smallpox vaccination plan ‘ceased’. USA Today, October 15, A1. Marsh Canada Limited. (1999). Coroner’s Inquest – influenza and long term care facility. Long Term Care Risk Management & Legal Update, 3(1), 1–2. Matthews, G. W., Murphy, A. M., Lopez, W., & Orenstein, W. (2003). Workshop on smallpox legal preparedness: What have we learned? Journal of Law, Medicine & Ethics, 31, 39–41. McCarthy, M. (2002). Unclear whether monkey virus in old polio vaccine caused cancer, says IOM. Lancet, 360, 1307. McMillan, J. (2000). Should health care workers be immunized against influenza? Pediatric Annals, 29, 699–702. Meltzer, M. I., Cox, N. J., & Fukuda, K. (2000). The economic impact of pandemic influenza in the United States: Priorities for intervention. Emerging Infectious Diseases, 1, 1–18. Morrison, A., Liston, A., & Abbott, J. (1976). The Canadian influenza decision, 1976. Canadian Medical Association Journal, 115. Nichol, K., & Hauge, M. (1997). Influenza vaccination of health care workers. Infection Control and Hospital Epidemiology, 18, 189–194. Nicholson, K. G. (2000). Should staff in long-term hospitals for elderly patients be vaccinated against influenza? Lancet, 355, 83–84. Osterholm, M. T. (2005). Preparing for the next pandemic. New England Journal of Medicine, 352, 1839–1842. Pachucki, C., Pappas, S., Fuller, F., Krause, S., Lentino, J., & Shaff, D. (1989). Influenza A among hospital personnel and patients: Implications for recognition, prevention, and control. Archives of Internal Medicine, 149, 77–80. Parmet, W., Goodman, R., & Farber, A. (2005). Individual rights versus the public health-100 years after Jacobson v. Massachusetts. New England Journal of Medicine, 352, 652–654. Patriarca, P., Weber, J., Parker, R., Orenstein, W., Hall, W., & Kendal, A. P. (1986). Risk factors for outbreaks of influenza in nursing homes: A case control study. American Journal of Epidemiology, 124, 114–119. Pellegrino, E. D., & Thomasma, D. C. (1988). For the patient’s good. New York, NY: Oxford University Press. Pengelley, H., & Whary, S. (2002). Battle rages against Quebec legislation. CMA Interface, 3, 1–4. Pope, J. (2003). Global Corruption Report, Transparency International, 14. Potter, C. (1998). Chronicle of influenza pandemics. In: K. Nicholson, R. Webster & A. Hay (Eds), Textbook of influenza (pp. 3–18). New York, NY: Blackwell Science, Inc. Potter, J., Stott, D., Roberts, M., Elder, A., O’Donnel, B., Knight, P., Nicholson, K. G., Webster, R. G., & Hay, A. J. (1997). Influenza vaccination of health care workers in long-term care hospitals reduces the mortality of elderly patients. Journal of Infectious Diseases, 175, 1–6. Public Health Agency of Canada. (2001). Canada Communicable Disease Report, May 15.

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CHAPTER 5 MEDICAL ETHICS AND EPIDEMICS: A HISTORICAL PERSPECTIVE Robert Baker Black Death: Florence, 1313. Some again, the most sound, perhaps, in judgment y affirmed that there was no medicine for the disease superior or equal in efficacy to flight; following which prescription a multitude of men and women, negligent of all but themselves, deserted their city, their houses, their estates, their kinsfolk, their goods, and went into voluntary exiley it was now time for all to flee from it, and that its last hour was come (Boccaccio [1348] 1921, pp. 5–11). –Decameron (1348) Giovanni Boccaccio (1313–1375). Black Death: London, 1603. Never let any man aske me what became of our Phisitions in this Massacre, they hid their Synodicall heads as well as the prowdest: and I can not blame them, for their y drugs turned to dirt: Galen could do no more good than Sir Giles Goosecap: Hippocrates, Avicen, Paracelsus, Rasis, Fernelius, with all their succeeding rabble of Doctorsywere at their wits end, for not one of them durst peepe abroad; and if anyone take upon him to play the ventrous Knight, the Plague put him to his Nonplus [i.e., confounded him] (Dekker [1603] 1925, pp. 36–37). –Thomas Dekker (1570?–1632). Black Death: London, 1665. The plague defied all medicines; the very physicians were seized with it, with their preservatives in their mouths; and men went about prescribing to others and telling them what to do, ‘till y they dropped down dead, destroyed by that very enemy they directed others to oppose. This was the case of several physicians, even

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ROBERT BAKER some of them the most eminent, and of several of the most skilful surgeons’’ (Defoe [1722] 1904, pp. 40–41). –A Journal of the Plague Year, Daniel Defoe (1660?–1731). Small Pox: London, Circa 1715. [Jasilla: Should the physician attend] ‘‘in Epidemical Cases when there’s a dreadful and general Mortality raging about?’’ [Olympia replies] ‘‘Your Question’s perhaps more perplexing than you imagine. And I know not whether ‘twas ever well Weigh’d and Resolv’d yet y Conduct seems to be more generally under the Direction of Prudential Choice than Moral Obligation [since] ‘Tis [physicians’] Duty, to consult their own Safety first y the more they can reconcile Distance with Action...the Truer they are, as they ought to be, to their own and the Publick Interest y And yet they should not be so intent upon That neither, as not to visit where they have Reason to believe their presence may be of utmost Consequence to the Recovery of others, and not extreamly or immediately Dangerous to themselves. And surely they have less reason to fear the Foe, being doubly Arm’d with Preservatives as well as Restoratives’’ (Parker, 1715, pp. 68–69). Yellow Fever: Philadelphia, 1793. Hereafter my name should be Shadrach, Meshach, or Abednego, for I am sure the preservation of those men from death by fire was not a greater miracle that my preservation from the infection of the prevailing disorder. I have lived to see the close of another day, more awful than any I have seen yet. Forty persons it is said have been buried this day, and I have visited and prescribed for more than 100 patients y Amidst my numerous calls to the wealthy and powerful, I do not forget the poor (Rush [1793] 1951, pp. 655–656). –Benjamin Rush (1746–1813). Letter to Mrs. Rush, September 8, 1793. Yellow Fever: New York, 1795, 1798. During those memorable visitations of God’s providence on our city, in 1795 and 1798, when pestilence spread its devastation upon our shores, though fully conscious of the danger, he abided with us; and no consideration whatever could induce his to swerve from his duty – a faithful sentinel, he remained as his post – amidst the distressing and fatal ravage of the yellow-fever, Dr. Tillary spared no exertions that could contribute to the comfort of his suffering fellow-citizens. He visited and attended with unceasing assiduity all who called for his professional services, without reserve; and it may be added, that to the poor and forsaken, from whom no recompense could be expected, his labours were for the most part devoted; the more wealthy, who were able to remunerate him, having chiefly abandoned the city, the scene of desolation (Hosack, 1818, pp. 9–10). –David Hosack, Funeral Address for Dr. James Tillary (1756–1818) Cholera: 1832–1834: Cincinnati, Chicago, New York, other urban centers: y it is the duty of physicians to be ever vigilant for the welfare of the community y ever ready to give counsel to the public in relation to matters especially appertaining to their profession, as on subjects of medical police, public hygiene, and legal medicine y and when pestilence prevails, it is their duty to face the danger, and to continue their labors for the alleviation of the suffering, even at the jeopardy of their own lives (Baker et al., 1999, p. 333). –American Medical Association, 1847.

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CHALLENGES IN CONSTRUCTING A HISTORY OF MEDICAL ETHICS AND EPIDEMICS Karl Marx could only pen the memorable line, ‘‘the history of all hitherto existing society is the history of class struggles’’ because he was heir to the sanitary and public health reforms of the nineteenth century (Marx [1848] 1972, p. 335). The Black Death, which had wiped out much of fourteenthcentury Florence and which had regularly decimated sixteenth- and seventeenth-century London, was now but a faint memory. Yet had a historian of some earlier period of European history thought to pen a line as presumptuous as Marx’s, it might have read: ‘‘the history of all hitherto existing society is the history of struggle with plague or pestilence.’’ Epidemics and pandemics have haunted human societies from their beginnings. The congregation of large masses of humans in urban settings, in fact, made the evolution of human infectious disease microorganisms biologically possible (McNeill, 1976; Porter, 1997, pp. 22–25). Epidemics have been as determinative of the course of economic, social, military and political history as any other single factor – emptying cities, decimating armies, wiping out generations and destroying civilizations. Given the extraordinary role epidemics played in the life and death of peoples and cultures, one might reasonably expect an extensive literature on epidemics. One also might expect that much of this literature was written by health care practitioners, that it would include some discussion of the ethics of health care practice during epidemics, and that we by now would have a well-settled historical account of medical ethics during epidemics. All of these beliefs are correct – except for the last. At present, we have no settled historical account of medical ethics during epidemics. One reason for the absence of any such account is the difficulty of assembling the evidence from which one can construct a history of practitioner norms and practices during epidemics. The best evidence for practitioners’ practices lies in account books, bills of mortality, census data, church records, contracts, lawsuits, medical books and the like. Evidence of practitioner and public beliefs about norms appropriate to practitioner conduct during epidemics, on the other hand, lies in a somewhat different evidentiary base: diaries, eulogies, lectures, letters, obituaries, sermons and a body of literature known as ‘‘plague tracts’’ or ‘‘pest tractate.’’ Plague tracts are small mass-market tracts or pamphlets written about the plague. They were published in Latin and in most of the vernacular

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languages of Europe from the time of the arrival of the Black Death in Europe in the fourteenth through eighteenth century (Slack, 1979, 1985; Wilson, 1925; Keiser, 2003 – the Parker passage in the prefatory quotations is an example). The earliest known English-language medical plague tract, Little Book, was published in 1486 (Slack, 1979, p. 239). Of all the medical titles published in English between 1486 and 1605, 15% are plague tracts in the sense that they dealt with epidemics (exclusive of syphilis); 10.7% of all books published in English before 1605 were plague tracts, which makes this category the second largest selling category of titles, and the third largest selling set of editions published. Put another way, during this period, 7.5% of the total medical literature published in octavo or smaller (i.e. the ‘‘mass market’’) were plague tracts, which makes them the third largest category of mass-market titles published in English during that period (Slack, 1979). Supplementing these mass-market publications are literary accounts of the plague by authors like Boccaccio and Defoe that appeal to higher end of the market. Scholars of the history of medical ethics during epidemics, inspired by such contemporary controversies as the whether physicians have a duty to treat patients suffering from AIDS or to serve the public during a bioterrorist attack, have drawn on plague tracts and other evidentiary materials to construct a handful of studies. Not surprisingly, since these studies are inspired by different events, address somewhat different questions to the evidence, and are viewed from the perspective of scholars of different backgrounds, training and methodological approaches, these accounts are often at odds with each other. This chapter offers an overview of the history of medical ethics in epidemics, analyzing contention and consensus to offer a somewhat different account of the evolution of practitioner ethics in times of epidemics.

POINTS OF CONSENSUS ON THE HISTORY OF PRACTITIONER ETHICS DURING EPIDEMICS It is generally agreed that the Hippocratic corpus offers medical practitioners no moral guidance, specifically addressing proper practitioner conduct during epidemics. A host of questions that would vex later ages are not addressed. Not a word can be found about the wisdom of warning the public about the danger of plague. There is no discussion of the ethics of quarantine and isolation, nor is there any reflection on whether the dangers of epidemics justify exemptions from normal standards of propriety with

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respect to confidentiality and fees. There also is no discussion of whether practitioners have a duty to place themselves at risk to care for the plaguestricken. In their perceptive analysis of the history of practitioner’s duties to care for plague-stricken people, Samuel Huber and Matthew Wynia explain the absence of such discussions in the Hippocratic corpus by arguing that at least two of the three conceptual requisites for a duty to treat were missing from ancient medicine. ‘‘For physician acceptance of the duty to treat in epidemics: [1] physicians’ [must have] recognition of infectious risk, [2] an organized professional identity, and [3] a public expectation of the duty’’ (Huber & Wynia, 2004, p. W5). ‘‘Physicians’’ in the ancient world, they argue, ‘‘did not perceive patients to be ‘infectious,’’’ and so they had no reason to believe that a special ethics for epidemics was required. It also is agreed that ethical standards dealing specifically with practitioner conduct during epidemics had become evident by the mid-nineteenth century. The most famous statement of physicians, professional obligation to care for the plague-stricken is in the American Medical Association’s 1847 Code of Ethics: ‘‘When pestilence prevails, it is [physicians’] duty to face the danger, and to continue their labors for the alleviation of suffering, even at jeopardy of their own lives’’ (Huber & Wynia, 2004, p. W5; Jonsen, 2000, p. 47). There is also little doubt that practitioners’ acceptance of their duties to treat the epidemic-stricken atrophied in the latter part of the twentieth century. One explanation is that doctors had come to believe – mistakenly as it turned out – that antibiotics and vaccines would soon eliminate the threat of infectious epidemics and pandemics. Thus, medical ethics specifically addressing practitioner conduct during epidemics appeared to be dated and gratuitous – until HIV/AIDS made its presence felt in the late 1980s. Between these points of consensus lies the vast expanse of medical history between the Hippocratic corpus (which dates to about the fourth century BCE) and the nineteenth century (CE); i.e. most of the history of Western medical ethics. The scant scholarly literature covering this terrain can be divided between two strands of thought: nihilist and traditionalist. Nihilists claim that there were no moral norms specific to the conduct of medical practitioners during epidemics before the mid-nineteenth century. Traditionalists, by contrast, believe that a continuous tradition of practitioner medical ethics during epidemics is discernable from the fourteenth century onward.

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TRADITIONALISM: THE FOURTEENTH CENTURY ORIGIN OF THE ETHICS OF EPIDEMICS The case for a fourteenth century origin of norms of medical ethics specific to epidemics is spelled out in a 1977 essay by Darrel Amundsen, reprinted in 1996 (Amundsen, 1977, 1996). The gist of Amundsen’s case for a medical ethical obligation to treat the plague-stricken is laid out in the following passage. From the tone of various historical sources, physicians who fled during the plague seem to have been viewed as acting shamefully, both by the public and by colleagues. When writers commented on instances of physicians who fled from the plague, their tone was condemnatory. The extent to which physicians did flee cannot be determined from the evidence with any certainty. The number of physicians who did flee from plague-ridden cities may have been relatively small y . Many of the authors of the pest tractate seem to have assumed that their readers would have access to physicians during a time of plague y the author of an anonymous pest tractate of the first half of the fifteenth century urged the sick to ‘‘follow the advice of a ‘good physician’’’ (Amundsen, 1977, pp. 409–410; 1996, pp. 294–295).

Having established that it was considered shameful not to treat the afflicted during times of epidemics, Amundsen then looks for evidence of other aspects of a fourteenth-century medical ethics of epidemics. He observes that plague tracts recommend eschewing avarice and cupidity during epidemics. A fourteenth-century tract by d’Agramont (1348) warns physicians ‘‘[to] guard, in times of pestilence against financial cupidity [or risk courting a reputation as] a son of avarice and greed’’ (Amundsen, 1977, p. 418; 1996, p. 299). Charges of physician avarice and cupidity during epidemics appear to have had resonance in popular culture. The ‘‘verry parfit praktisour,’’ the very perfect practitioner of Geoffrey Chaucer’s (ca. 1343–1400) Canterbury Tales, is portrayed as having ‘‘kepte the gold he wan in pestilence, for gold in physik is a cordial, therefore he loved gold in special’’ (Jonsen, 2000). Historians of ethics during epidemics have not been persuaded by Amundsen’s analysis (Fox, 1988; Wallis, 2006, note 32). We argue this point, in part, because seventeenth- and eighteenth-century commentators on practitioner flight treat the issue as novel. For example, the English physician Samuel Parker (1681–1730) has Jasilla, his spokeswoman for the public, raise the question of whether physicians are obligated to attend the plaguestricken: ‘‘when there’s a dreadful and general Mortality raging about?’’ Olympia, Parker’s spokeswoman for physicians, replies ‘‘Your Question’s perhaps more perplexing than you imagine. And I know not whether ‘twas ever well Weigh’d and Resolv’d yet y .’’ (Parker, 1715). If the matter had

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not yet been ‘‘well Weigh’d’’ when Parker wrote in 1715, it seems unlikely that early eras had set some well-known precedent for a norm prohibiting practitioner flight.

THE NIHILIST INTERPRETATION OF THE HISTORY OF MEDICAL ETHICS AND EPIDEMICS Medical historian Daniel Fox ably summarizes the grounds for holding that no medical ethical norms prohibited practitioner flight during epidemics prior to 1847. He observes that physicians who fled were not condemned for doing so, while those who remained to care for the plague-stricken typically did so because governmental authorities had contracted with them, paying them fees to act as ‘‘plague doctors.’’ Here is Fox’s summary of his position: Much of the evidence about physicians abandoning patients during epidemics, when read in context, furnishes no proof that such conduct violated prevailing ethical norms. During some epidemics, for instance, physicians followed their patients into temporary exile. Moreover, physicians have often justified abandoning patients. Their justifications have included retreating when medicine is powerless to help, threats of physical violence by distraught family members y Physicians have also justified not treating particular patients in order not to transmit the disease themselves y . Physicians who treated patients during epidemics were not necessarily acting solely or even primarily on the basis of ethical principles, secular or religious, written or implicit. Two themes stand out in accounts of the mobilization of the medical profession during epidemics between the fourteenth and nineteenth centuries. First, civic leaders and physicians negotiated about who would treat those who were stricken, especially patients in the lowest classes. Second, these epidemics offered physicians [economic and status] opportunities as well as risks (Fox, 1988, p. 6).

Fox’s nihilist assessment is supported strongly by his observations that many practitioners who tended to the plague-stricken were under contract to do so, and those not bound by such contract were not criticized for fleeing epidemics (see, e.g., the passages from Boccaccio, Dekker and Defoe that preface this chapter). However, things appear to have changed in seventeenth-century England, when increasingly large numbers of practitioners remained to treat the plague-stricken and when attitudes critical of physician flight surfaced. During the Great Plague of London of 1665, when bubonic plague killed between 15% and 20% of the city’s population, many practitioners not under contract to a municipality stayed to care for the plague-stricken – even though, as Defoe reports, a considerable number ‘‘dropped down dead, destroyed by that very enemy they directed others to oppose’’ (Defoe [1722] 1904). It is estimated that while half of all medical

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practitioners in London fled the plague, the other half remained in the city to treat the plague-stricken – of those who remained, about half were killed by the plague (Moore, 2004, pp. 143–144; Wear, 2000, pp. 337–338). Moreover, all but two of the members of the College of Physicians who remained in London during the Great Plague of 1665 stayed voluntarily and were not under contract to city as plague doctors (Clippindale, 1909, pp. 351–353). Can a nihilist account explain why these seventeenth-century practitioners voluntarily put their lives at risk? Did they do so for financial gain, as a career-building strategy, or in response to some norm? Moreover, if they acted in response to some norm, was it a norm of religious ethics (e.g., a norm of Christian charity) or norm of secular ethics? If the latter, was it an ethical norm specific to medical practitioners in their role as medical practitioners, and thus a norm of medical ethics? Fox anticipates this line of inquiry and suggests that those practitioners who treated the plague-stricken voluntarily did so for prudential reasons, e.g., building their reputations or out of fear of losing their reputations. To support the latter claim he cites the great French surgeon, Guy de Chauliac (1300–1368), author of Chirurgia Magna (1368), the standard European surgical textbook through the seventeenth century. Chauliac wrote that the Black Death ‘‘was so contagious y that even by looking at one another people caught it y . And I, to avoid infamy, dared not absent myself but with continual fear preserved myself as best I could’’ (Amundsen, 1977, pp. 410–411; second sentence quoted in Fox, 1988, p. 7). Clearly, de Chauliac recognized the personal risk involved in treating plague patients. His stated motivation for doing so was ‘‘to avoid infamy.’’ For Fox, this motive serves as evidence of the absence of any moral norm regulating practitioner conduct during epidemics.

ANGLO-AMERICAN PRACTITIONER ETHICS AND EPIDEMICS 1660–1714 There is good reason to believe that, at least in the circumscribed world of the English-language cultural sphere, a discourse on the ethics of practitioners’ roles during epidemics began to emerge in Restoration England (1660–1685). During this period, Huber and Wynia’s three conditions for recognizing a physician’s duty to treat during epidemics began to be approximated. This discourse, however, did not take the form anticipated by Fox or by Huber and Wynia in that it did not focus on practitioners’ duties.

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Why not? Because the ethical discourse of the plague tracts is not the sort of discourse characterized as ‘‘deontological’’ in technical philosophical jargon. It is, instead, an ethics that focuses on people’s character and character traits, on their worthiness and standing in the eyes of their creator, their ‘‘betters,’’ their peers and the public. Actions acquire moral worth not because of their dutiful nature or because of their good consequences, but because of what they indicate about the character of the actor. In other words, until Parker’s transitional tract of 1715, the ethical discourse found in English-language plague tracts was a discourse of vice and virtue – a virtue ethics. Virtue ethics is parsed in a discourse of adjectives and adverbs reflecting the quality and motives of the actor, not of verbs emphasizing actions or nouns assessing their consequences. It is filled with anecdotes and tales of conduct rendering one worthy – or unworthy – of approbation by one’s peers and of acceptance by one’s God. Avarice, cupidity and cowardice are disparaged; charity, compassion and courageousness are praised. When Fox, Huber and Wynia interrogate this literature with a question about duties, they are parsing their inquiry in a manner inappropriate to the moral discourse of the period. Fourteenth-, fifteenth-, sixteenth- and seventeenthcentury physicians simply did not think of their practices as constrained by duties, instead they considered some actions as virtuous and others shameful or infamous – which is as close as they would express themselves with respect to ‘‘duties.’’ It is also misleading to read contemporary notions of the physician–patient relationships into the plague tract literature. Before modern medical organizations arose and fragmented into dozens of specialties and sub-specialties, organized medical practice was divided between three groups – physicians, surgeons and apothecaries. Physicians were university educated and literate; surgeons and apothecaries were apprenticeship educated and, as often as not, illiterate. The practice of physic was regulated either by a university faculty or by a special ‘‘college,’’ a faculty without students created by royal or municipal authority. Surgeons and apothecaries were initially regulated by guilds; over time, however, as literacy became a requirement for entry into their fields, the guilds went upscale and became ‘‘colleges’’ modeled on physicians’ colleges. The physician–patient relationship, as we now understand it, had yet to evolve. Each group had a different relationship with those whom they treated. The closest approximation to the modern physician–patient relationship was the relationship between physicians and their typically upscale clients – royalty, the nobility, the gentry and the upper and middling classes.

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When members of these groups employed physicians, however, they did not think of themselves as patients, they thought of themselves as patrons. The physician–patron relationship was the inverse of the mid-twentieth century conception of the doctor-as-benign-demigod whose ‘‘orders’’ were to be scrupulously followed by patients and families. Patrons held the upper hand in the social dynamics of their relationship with physicians. Patrons commanded in this relationship, not the physicians whom they patronized. The social prestige and economic clout of patrons overrode physicians’ claims to authority as experts. As Parker remarked, a physician or upscale surgeon was ‘‘oblig’d to exert his Authority, yet with all the Decency and Deference he can, and to rule his Betters, tho’ with an Air of Duty rather than Tuition’’ (Parker, 1715, p. 129). Otherwise, the physician would commit the social faux pas of ‘‘commanding’’ one’s ‘‘Betters,’’ who could withdraw their patronage (Parker, 1715; see also, Fissell, 1993; Jewson, 1974; Jewson, 1976; Porter & Porter, 1989). Bearing these points in mind, reconsider Guy de Chauliac’s fear of infamy if he declined to treat his plague-stricken patrons. Chauliac’s patrons were Pope Clement VI (1291–1352, elected Pope 1342) and two of his successors. To refuse to treat these patrons, or anyone else at the Papal court in Avignon where de Chauliac practiced, would have affronted the norms of patronage and scandalized the Christian world. Thus, while Amundsen is correct to observe that Chauliac’s comment about ‘‘infamy’’ indicates the presence of a norm of conduct, the norm in question seems to have been a norm of patronage, not a norm relating specifically to physicians. The very same norms of patronage would apply to coachmen, maids and tutors. In all cases, the norms of patronage would require these attendants to follow their patrons into the countryside when they fled cities to avoid the plague. It is not clear whether norms of patronage should be considered ‘‘ethical’’ norms. Even if they are deemed ethical, however, since they would also apply to coachmen, maids and tutors as well as physicians, they are not norms specific to medicine and thus not norms of medical ethics. Even if one were to treat these norms of patronage as applied to physicians as equivalent to norms of what we should today call ‘‘medical ethics,’’ however, it would seem that the ‘‘medical ethics’’ of the period required physicians to follow their patrons who fled from epidemics in order to tend to their patrons’ needs. To summarize this point from a slightly different perspective, before the seventeenth century physicians did not abandon plague-stricken members of the lower classes and the poor when they fled cities during epidemics. The lower classes and the poor were not their patrons and the norms of the period accorded physicians no responsibility to treat them. If, therefore, the

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question one puts to the historical evidence is: did physicians have a duty to treat their plague-stricken patrons during epidemics. The answer is ‘‘yes but y’’ The ‘but’ is required because it is unclear that this is a norm of ethics or a norm of medical ethics, and because this norm obliges virtuous physicians to flee the city with their patrons, not to remain behind to treat those who were not their patients, however plague-stricken they might be. The historical data thus support a modified form of Fox’s nihilism. It also supports his claim that contractual obligation required city doctors and plague doctors, in their capacity as public officials, to remain in the city to care for the plague-stricken. The ethics in question is thus that of contract; it is not an ethics accruing to the role of physician or surgeon per se, i.e. it is not a matter of medical ethics. As no less an authority than Martin Luther make it clear that ‘‘paid public servants such as city physicians’’ are to be condemned for fleeing during epidemics not because they are physicians, but because they are reneging on their agreement to serve the city (Luther [1527], cited at Grell, 1993, p. 135). The point to be appreciated is that city physicians, surgeons and apothecaries are criticized for reneging on their responsibilities as ‘‘paid public servants,’’ not their responsibilities as physicians, surgeons or apothecaries (Fox, 1988; Wallis, 2006). Until the seventeenth century, physicians, surgeons and apothecaries were not presumed to have a role-generated obligation to treat someone simply because that person needed medical attention. Just as the butcher and the baker were not presumed to have a responsibility to supply the hungry with meat or bread merely because they were hungry, physicians, surgeons and apothecaries were not presumed to have a responsibility to treat or prescribe for anyone merely because they needed treatment. As Chaucer’s remark about the ‘‘very perfect physician’’ indicates, practitioners insisted on receiving fees for their services even, perhaps especially, during epidemics (Garcia-Ballester, 1993; Wear, 1993). Yet, Chaucer’s sarcasm suggests a tension between ideals of Christian charity and medical practitioners’ insistence on fees. As reformation Protestant morality became ascendant in English culture, the Christian critique became more assertive. Thus, the English physician Nicholas Culpepper (1616–1654) condemned his colleagues who would not come ‘‘to a poor man’s house who is not able to give them their fee y and the poor Creature, for whom Christ died must forfeit his life for want of money’’ (Culpepper [1649], cited at Wear, 1993, p. 112). As early as the sixteenth century, some practitioners tried to reconcile their insistence on fees with Christian ideals of charity by resorting to sliding fee scales. In 1579 the Queen’s Chirugeon William Clowes (1544–1604) advised young surgeons to be ‘‘not too

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covetous for mony, but a reasonable demaunder, Being good unto the poore, let the rich pay therefore’’ (cited at Wear, 1993, p. 112). None of these observations speak directly to the question that Fox, on the one hand, and Huber and Wynia, on the other, really addressed to the historical data. Fox’s queries were inspired by ‘‘current disputes about physicians’ ethical responsibility to treat persons with AIDS or HIV’’ (Fox, 1988, p. 5). Huber and Wynia’s (2004, p. W5) inquiries were inspired by ‘‘the use of anthrax for bioterror and the outbreak of a new contagious disease, Severe Acute Respiratory Syndrome (SARS).’’ What they wanted to know was whether medical practitioners have historically had ‘‘a duty to treat patients during epidemics as a core obligation of professional responsibility’’ (Huber & Wynia, 2004, p. W5). Did medical practitioners have something akin to a duty to treat the epidemic-stricken arising from their role as medical practitioners? The answer would appear to be that, at least in the English-language cultural sphere, the question of whether practitioners had such a responsibility did not even arise until the seventeenth century and when the discussion arose, it took a form different from the one that envisioned by Fox, Huber and Wynia. To date, the earliest-known discussion of the physician’s role during epidemics parsed in the English-language plague tract literature was initiated by Reverend James Balmford of London (1556–?), who turned from condemnations of card playing (Balmford, 1593, 1607) to questions about physicians’ responsibilities to the plague-stricken. ‘‘As for Phisitions, I onely propound this question: Whether they be bound in conscience to be resident, in regard of their profession, and ability to do good, or they may use their liberty to shift from themselves & for their lives, in regard as they are no publicke persons, and live by what they can get?’’ (Balmford, 1603). Balmford had himself been criticized for fleeing during an epidemic, depriving poor parishioners of their last rites. He was, in turn, raising a similar question about physicians: were they ‘‘bound in conscience to be resident, in regard of their profession y?’’ When Balmford raised the question about physicians being ‘‘bound in conscience’’ to be resident during epidemics ‘‘in regard to their profession, and ability to do good,’’ he reparsed the FoxHuber-Wynia question in terms of the moral discourse of the seventeenth century. Balmford, however, proffered no answer. He was perplexed because, although physicians, like ministers, did seem to have occupational duties related to epidemics, they were not ‘‘publicke persons’’ but rather private practitioners who ‘‘live by what they can get’’ and thus seemed to have no responsibilities to the public at large. As Defoe wrote, ‘‘it is y to their praise

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that they ventured their lives so far as even to lose them in the service of mankind. They endeavored to do good, and to save the live of others’’ (Defoe [1722] 1904, pp. 40–41). However, because they were not public persons, Defoe did not condemn those physicians who fled. Neither did Benjamin Rush, an avid and frequent critic of his medical peers, who makes no condemnatory comment when he remarks, in a letter to his wife, Julia that ‘‘Dr. Griffiths with his whole family left the city this day’’ (Rush, 1793, p. 718). Balmford, however, had parsed the question that Fox–Huber–Wynia meant to address to the historical data: Was there an ethical norm binding on medical practitioners, by virtue of their occupation, that required them to risk their lives to treat the epidemic-stricken irrespective of any contract, or of the stricken person’s status as patron, or of their ability to pay? Did practitioners have a responsibility to treat the epidemic-stricken based simply because they were practitioners and the epidemic-stricken had medical needs? No one provided a clear answer to this question until the seventeenth century. During this period, the government turned to the College of Physicians (founded 1518 for London, 1523 for all of England) for assistance during epidemics. More specifically, it asked the College and its membership to declare epidemics to determine which households had to be segregated (isolated for a period of time) during epidemics and to supervise the preparation of the tables of mortality listing deaths from plague. By 1625, the College of Physicians was offering the government the services of two physicians to deal with the (bubonic) plague-stricken in London. Forty years later, during the Great Plague of 1665 (also bubonic plague), it offered a list of eight physicians to serve the city. Ultimately half of those on the list stayed in London to care for the plague-stricken, even though only two were contracted to the city to serve as plague doctors. As it turned out seventy percent of physicians (seventeen of the twenty-four), who remained in London during the Great Plague were members of the College (Grell, 1993, p. 127) – which was comparable to the portion of apothecaries and surgeons who remained (Moore & Moore, 2004, pp. 143–144; Wear, 2000, pp. 337–338). The decision to remain in London during the Great Plague of 1665 was in itself an act of considerable courage. As one nineteenth-century historian wrote, [Almost all] persons of position and wealth, and indeed those endowed with sufficient means to support themselves elsewhere, resolved to fly from the capital y . the thoroughfares [were] crowded all day long with coaches conveying those who sought safety in flight, and with wagons and carts containing their household goods and belongings,

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until it seemed as if the city would be left without a soul. y Some few families remaining in the capital laid in stores of provisions, and shutting themselves up securely in their houses, permitted none to enter or leave, by which means some of them escaped contagion and death. The [Royal] court [i.e. the national government] tarried until the 29th of June, and y none too soon, for the pestilence had reached almost to the palace gates y . All through the latter part of May, and the whole of the following month, this flight from the dread enemy of mankind continued y until at last the capital seemed veritably a city of the dead (Molloy [1887] 2006, Chap. IX).

As this historian notes, writing from a nineteenth-century perspective, ‘‘for the credit of humanity be it stated, that not all possessed of health and wealth abandoned the town y . the lord mayor y some of his aldermen, and a goodly number of physicians, chirurgeons, and apothecaries, all of whom by their skill or exertions sought to check the hungry ravages of death.’’ The medical man singled out for special praise was an apothecary William Boghurst (1631?–1682), who wrote an extensive manuscript and rather heroic account of his experiences during the Great Plague. I commonly drest forty soares in a day, held their pulse sweating in the bed y lett one blood, gave clysters y held them up in their bedds to keepe them from strangling and choking half an hour together, commonly suffered their breathing in my face severall tymes when they were dying; eate and dranke with them, especially those that had soares; sate downe by their bedd sides and upon their bedds, discoursing with them an houre together. If I had tyme, I stayed by them to see their death and closed up their mouth and eyes (for they died with their mouth and eyes very much open and stareing); then if people had noe body to helpe them (for helpe was scarce at such tyme and place) I helpt to lay them forth out of the bedd, and afterwards into the coffin, and last of all, accompanying them to the grave (Boghurst [1665] 1979, pp. 30–31).

Boghurst’s moving narrative was constructed to address the medical politics of his day. Ordinarily, apothecaries like Boghurst had no authority to intrude on the prerogatives of surgeons by letting blood, dressing wounds or administering clysters (enemas administered through rectal syringes). Except when necessitated by charity or an emergency, they were supposed to act under the direction of physicians or surgeons. Boghurst’s narrative emphasizes that he was exempt from supervision because he acted in an emergency and from charitable motives. The narrative also challenges the propriety of limiting apothecaries’ authority to act on their own, suggesting that they could act without the supervision of physicians or surgeons. The narrative also undermines the authority of physicians and surgeons by reporting that Boghurst ‘‘suffered [the plague-stricken patients’] breathing in my face severall tymes when they were dying; eate and dranke with them, especially those that had soares; sate downe by their bedd sides and

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upon their bedd.’’ This account challenges the notion that plague was directly contagious, undermining physicians’ reasons for fleeing from the plague. Boghurst also critiques physician-flight by suggesting that physicians have a role-generated duty to treat ‘‘attend upon the sick,’’ comparable to that of a captain to lead his troops, or a minister to tend to his congregation. But here ariseth another question, who may fly, and who may not, for it is not to bee thought that all may run without distinction, care or consideration y . I think that all may fly that are free and not obliged to stay either by their office, relations or necessities such as Magistrates, Ministers, and Physitians, Apothecaries, Surgeons, Midwives y . Every man that undertakes to bee of a profession or takes on him any office must take all parts of it, the good and the evill, the pleasure and the pain, the profit and the inconvenience altogether and not pick and chuse; for Ministers must preach, Captains must fight and Physitians attend upon the sick, etc (Boghurst [1665] 1979, pp. 59–60).

Over six decades had passed since Balmford had wondered aloud about physicians’ duties to attend the epidemic-stricken. In the context of the Great Plague of 1665, medical practitioners who were neither physicians nor surgeons were offering an answer: all medical practitioners, including physicians, have a responsibility to attend to the epidemic-stricken. Modeling this responsibility by their own conduct, they sought to undermine the moral claims underlying the social authority of physicians and surgeons and to thereby elevate their own claims to social and legal status. Boghurst was not the only practitioner to employ this strategy. George Thomson (1648–1679), an iatrochemist or Galenic physician – a member of a seventeenth-century school of alternative medicine – also used the occasion of the Great Plague of 1665 to undermine the authority and status of the College of Physicians, but he took a different tack, arguing that flight affronted ideals of Christian charity. Thomson launches his critique by remarking that he himself could have chosen to ‘‘enjoy my ease, pleasure and profit in the country y yet I would rather chuse to lose my life, then violate in this time of extreme necessity, the band of Charity towards my neighbor, and dedocorate that illustrative profession I am called to’’ (Thomson, 1665, p. 2). Thomson concludes with a harsher version of the criticism implicit in Boghurst’s comparison of physicians with captains in the army. ‘‘If Straglers, Desertors, and Runnaways in an Army y ought to suffer loss of life and Estate; I see no reason why these men, whose function obliges them to stand out to the last, should deserve less punishment if they deliver such a vast populace City to the fury of so implacable a Foe’’ (Thomson, 1665, p. 2).

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The critique of physician flight launched by apothecaries and alternative practitioners put the College of Physicians on the defensive. The head of the College, Nathaniel Hodges (1629–1688), who had himself remained in London to treat the plague-stricken, was forced to justify the flight of his colleagues by offering the traditional justification: physicians fled the city ‘‘not so much for their own Preservation, as the Service of those whom they attend,’’ i.e., their patrons (Hodges [1672] 1721, p. 23). Another member of the College of Physicians Jonathan Goddard (1617–1675), a friend of Isaac Newton (1643–1727) and a founder of the Royal Society (i.e., the Royal Society for the Improvement of Natural Knowledge, founded 1660, the world’s oldest learned society), also had to publicly defend physician-flight to his colleagues at the Royal Society. Samuel Pepys (1633–1703), the famous diarist, who, as an employee of the Admiralty (Royal Navy) had remained in London for most of the Great Plague, was unimpressed by the defense. He wrote disparagingly that Goddard ‘‘fill[ed] us with talk in defense of his and his fellow-physicians’ going out of town in the plague-time; saying that their particular patients were most gone out of town and they left at their liberty – and a great deal more, etc.’’ (Grell, 1993, p. 132). Pepys’ characterization of Goddard’s speech as a ‘‘defense,’’ indicates the presence of a norm. As the Oxford ordinary language philosopher John L. Austin (1911–1960) observed in his classic philosophical analysis of excuses and justifications, in ordinary discourse the need to excuse or to justify arises either because one has been accused of norm violation, or because one fears that one might be accused of such a violation (Austin, 1961). Since Pepys’ himself was eventually forced to flee the city, what seems to be at issue is not the propriety of flight, but the propriety of a physician fleeing when there are sick persons in need of attention. Thus in 1666, in the aftermath of the Great Plague, we find hints that a role-generated norm requiring physicians to care for the plague-stricken might be forming. Nonetheless, the idea that physicians had an obligation to provide treatment for the plague-stricken was problematic, in part, because Boghurst admitted the medicine of the day lacked an effective treatment for the plague (Boghurst [1665] 1979, p. 94). All commentators on the plague – Boccaccio, Defoe, Dekker and so forth – remarked on the futility of medicine in the face of the epidemic. To quote Defoe, ‘‘the plague defied all medicines; the very physicians were seized with it, with their preservatives in their mouths; and [yet] men went about prescribing to others and telling them what to do’’ (Defoe [1722] 1904, pp. 40–41). How could physicians possibly have a duty to risk their lives to administer ineffective ‘‘cures’’ and preventatives?

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A DEFEASIBLE DUTY TO TEND TO THE EPIDEMICSTRICKEN: 1715–1846 The earliest-known tract to expressly address these issues was published anonymously in 1715 by a physician, Samuel Parker. As the title of his Essay on the Duties of Physicians and Patients makes clear, in striking contrast to earlier works in the plague tract literature, this essay is patently deontological, i.e. it is an essay about duties. Speaking through Olympia, his spokeswoman for medicine, Parker asserts that physicians have a duty to use their knowledge and abilities y to as good affect as may be, not only when himself pleases, but when anyone else wants the Benefit of them, ‘Tis his Duty to come when he is call’d whether to Rich or Poor, from his Table or his Bed, to Distant Places as well as Near, to Prisons as well as Palaces, to his worst Enemy as well as his best Friend, to Honest Men and Knaves, to Malefactors and Traitors as well as Confessors and Patriots; in a word, to all Mankind without Exception. y there are some Junctures and Emergencies, which will very well justify his Incompliance with a Summons. For instance, if either he himself happens to be so much indispos’d that he does not think it safe for him to go y or other Patients he’s already retain’d by, are in such Condition, that his Attendance on them is absolutely necessary. The Rule in these and the like Cases is to stay or go, according as the Case of the one of the other Patient is more or less Difficult, Dangerous, Acute, or Painful; or as the one’s Life or Health is of more Publick Importance that the Other’s; or as the Scale happens to turn between them either in Point of Personal Significancy or Obligation (Parker, 1715, p. 65).

In these passages, Parker stipulates that unlike the butcher, the baker and the candlestick maker, physicians do have a role-generated duty to attend the sick, i.e., to come when ‘‘anyone wants the Benefit of them.’’ This duty, however, is not absolute. It is defeasible. The physician is exempted from the duty to come when summoned when he ‘‘does not think it safe for him to go’’ because of his own ill health. Moreover, in exercising this duty, important lives must take priority over those of less importance: physicians should treat a prince before a mere noble man, an old friend or patient before a new one, ‘‘a Patriot before a Partizan, and a Wise Man before a Fool’’ (Parker, 1715, p. 66). Although this set of priorities suggests that physicians’ duties to highstatus patrons should override their duty to treat the plague-stricken poor, i.e., although this sounds like the traditional justification for physician flight, Parker departs from tradition by claiming that physicians have a presumptive duty to treat anyone in medical need. Having established this presumptive duty to attend ‘‘anyone wants the Benefit of them,’’ Parker, or rather his spokeswoman, states the Fox–Huber–Wynia question: ‘‘how a

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Physician ought to behave in Epidemical Cases, when there’s a dreadful and general Mortality raging around him?’’ (Parker, 1715, p. 68) Whatever services are supplied to the poor in these contexts, Parker claims, should be supplied ‘‘gratis’’ because ‘‘Professions y are charg’d with a Debt of Succor and Service to the Poor; Especially y Physick.’’ Thus a member of the ‘‘College [of Physicians] should think it a sort of Sacrilege to let the Poor Man’s Mite come within [his] Palm’’ (Parker, 1715, pp. 70–72). Parker’s spokeswoman also observes, however, that physicians’ prudential duty to insure their own safety overrides their duty to attend to the epidemic-stricken. In the main, ‘tis their Duty to consult their own Safety first; and yet they should not be so intent on That neither, as not to visit where they have Reason to believe that their Presence may be of the utmost Consequence to the Recovery of others, and not extreamly or immediately Dangerous to themselves y . the more they can reconcile Distance with Action, and the farther off they begin to Break Ground the Truer they are to their own and the Publick Interest. And therefore it may be adviseable for them, especially if they have been already with some of the Infected, and seen the Symptoms and the Nature of the Malignity, to sit at home, and give out Directions and Prescriptions in their own Studys rather than in the Sick People’s Chambers (Parker, 1715, pp. 69–70).

Parker thus answers the Fox–Huber–Wynia question affirmatively: physicians have a role-related duty to attend the epidemic-stricken. However, because they also have a duty to look out for their own safety that overrides their duty of attendance, they are exempt from attending in certain conditions. To use the technical jargon of moral philosophy, Parker treats the duty to attend as defeasible; i.e., a duty that can be voided or overridden by other duties, including physicians’ duty to protect their own health. Thus, in ‘‘epidemical cases,’’ physicians are exempt from their duty to attend if (1) ‘‘their attendance is ‘‘extremely or immediately dangerous to themselves,’’ or if (2) they have no ‘‘reason to believe that their presence may be of the utmost consequence to the recovery’’ of the epidemic-stricken. The presumptive duty to treat the epidemic-stricken is overridden if physicians reasonably believe that they lack the ability to affect the epidemic-stricken patient’s recovery, or, if they reasonably believe that treating the epidemic-stricken would prove extremely or immediately dangerous. To put the point somewhat differently, for a physician to risk life or health to provide medical care that is unlikely to effect the outcome of an epidemic, while praiseworthy, lies beyond the bounds of what is required by duty (i.e., it is, in the technical jargon of moral philosophy, supererogatory, a term which literally means beyond one’s obligations). Note that Parker

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states these exempting conditions in terms of what physicians have ‘‘Reason to believe.’’ The duty to treat the epidemic-stricken thus comes into force only when physicians have reason to believe that their interventions can affect the outcome of the disease without putting themselves at extreme and immediate risk. Physicians, however, might reasonably entertain different beliefs about the efficacy of medical interventions and the risks of applying them. A physician like Benjamin Rush, who believed that Yellow Fever was caused by environmental factors and thus that contact with patients posed no additional risk to the physician, and who also believed that that his therapeutic interventions (radical bleeding), significantly lessened the outcome of the disease, would be duty bound to treat those stricken with the fever (Kopperman, 2004). As Rush put it in a letter to his wife: it ‘‘as much your duty not to desert me y as it is my duty not to desert my patients’’ (Rush, 1793, cited at Huber & Wynia, 2004, p. W6). However, physicians who subscribe to a contagion theory of Yellow Fever, and who thus had reason to believe that their lives were at risk from contact with their patients, would not be duty bound to risk their lives by exposing themselves to the disease. In their case, it was permissible to refrain from treating out of a prudent concern for safety – especially since the 1793 Philadelphia Yellow Fever outbreak killed ‘‘a large portion of the gentlemen of the faculty y . Hardly one of the practicing doctors that remained in the city, escaped the sickness – some were three, four and five times confined’’ (Carey, 1793, p. 75). Rush himself was stricken three times during the epidemic and often lists the names of fellow physicians who were stricken in his letters (Rush, 1793, p. 708). The defeasible duty to attend that Parker characterizes will thus obligate some physicians to treat the epidemic-stricken, while allowing others, with equal propriety, to consider themselves free from any such duty. The differentiating factor here is not physicians moral views, or even their character, but rather their reasonable beliefs about (1) risks to themselves, and (2) about the efficacy of their medical interventions. To reiterate, what is at issue in this context is not the defeasible duty to treat the epidemicstricken – which is treated as a given – but rather the two exempting conditions, i.e., what physicians can reasonably believe about the efficacy of their treatments and the nature of the risks they undertake administering them to the epidemic-stricken. In this context, moral debate and controversy naturally takes the form of a debate over efficacy and risk or, to use the language of the period, the debate is over contagionism and anti-contagionism.

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In point of historical fact, this is precisely the nature of the discourse used in the English-language plague tract literature from the 1720s through the next century or so; i.e., the discussion focuses on the contagionism and attendant notions, like quarantine. The concept of contagionism appears to have been introduced into English-language discourse in 1720–1721 when the English government commissioned a physician, Richard Mead (1673–1754), to recommend a policy for preventing the Plague of Marseilles (1720) from reaching British shores. Mead was a fellow of both the College of Physicians and the Royal Society, and, not coincidentally, physician to Sir Robert Walpole (1676–1745), England’s first Prime Minister (1721–1742). Mead had also been experimenting with the Turkish system of live small pox inoculations as a way of immunizing people against small pox, using Newgate prisoners as his subjects (Zuckerman, 2004, pp. 289–290) – an arrangement that seemed to raise no moral concerns at that time. Given Mead’s eminence – Parker had dedicated his dialogues on the duties of physicians to him – his expertise on epidemic disease, and his political connections, Mead seemed the ideal physician to consult on the subject. In 1720, Mead published A Short Discourse Concerning Pestilential Contagion, and the Methods to Be Used to Prevent It – the first book of epidemiological advice produced by a medical practitioner at the request of the state (Zuckerman, 2004, p. 274). Acting on his advice, a parliamentary act of 1720–1721 introduced the quarantine of ships and flirted with the quarantine of towns suspected of infection, by means of a Cordon Sanitaire, a sanitized zone whose borders would be enforced by armed guards. The act was too great an imposition on the British sense of personal liberty and was quickly repealed. The arguments leading to its repeal, however, were parsed in a political discourse of sovereignty and rights, not a discourse on duties or virtues. From Mead’s period forward, contagionists tended to favor strong state actions with respect to quarantine and isolation, and a weak commitment to medical treatment of the epidemic-afflicted. Anti-contagionists, like Rush, a signatory to the U.S. Declaration of Independence and physician to George Washington’s troops during the American Revolution, opposed strong state action and quarantine, but favored medical treatment of the epidemicafflicted by individual physicians. As the great historian of medicine, Erwin Ackerknecht (1906–1988), observed in one of his many foundational articles on the history of public health medicine, epidemiological theories became inextricably fused with politics (Ackerknecht, 1948). Until the mid-nineteenth century, this mix of ideologically infused epidemiology – of politicized

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arguments for and against contagionism – drowned out, or at least submerged, direct discourse on the ethics of practitioner conduct during epidemics. Throughout this period, the ethics of defeasible duty outlined by Parker seems to provide the best account of practitioner morality. Practitioner discourse on epidemics often focuses on Parker’s two exempting conditions – the efficacy of medical interventions in altering the outcomes of disease, and the degree of risk that practitioners should accept in administering these interventions – although, to reiterate, this discourse is typically parsed in a politically charged debate over contagionism/quarantine versus anti-contagionism/anti-quarantine (e.g. Pascalis Ouvie`re, 1819). Memorial speeches, moreover, tend to laud practitioners who treat the epidemic-stricken in language that suggests (as Parker’s account would) that those who opt to fulfill this especially dangerous and readily defeasible duty are praiseworthy for having done so. In an 1818 funeral oration, e.g., New York physician David Hosack (1769–1835) praises a deceased physician for never ‘‘swerv[ing] from his duty.’’ [Like] a faithful sentinel y he remained at his post y amidst the distressing and fatal ravage of the yellow-fever y he spared no exertions that could contribute to the comfort of his suffering fellow-citizens [especially] the poor and forsaken, from whom no recompense could be expected [and to whom] his labours were for the most part devoted; the more wealthy, who were able to remunerate him, having chiefly abandoned the city (Hosack, 1818, pp. 9–10).

Parker’s conception of defeasible duty, in short, offers the most coherent account we have of eighteenth- and early-nineteenth-century AngloAmerican practitioner discourse and conduct about and during epidemics. Had Parker’s Essay been widely read, the evidence in favor of this interpretation would have been compelling. Yet aside from Rush, who used Parker’s anonymously-published essay as an unacknowledged source for his lectures, few nineteenth-century practitioners seemed directly aware of Parker’s tract. Perhaps it suffices that Rush had read Parker’s Essay, since Rush was the most influential physician in eighteenth-century and early nineteenth-century America. In fact, many of the ideas Rush cribbed from Parker found their way into nineteenth-century medical thought. Parker’s 1715 list of patients’ duties, e.g., became the basis of Rush’s 1803 lecture ‘‘Of the Duties of Patients to Their Physicians’’ (Rush [1803] 1811, pp. 318–339). This lecture, in turn, was the source for patients’ duties section of the 1832 Baltimore Code of 1832 (Medico-Chirurgical Society of Baltimore, 1832),

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which, in turn, became the basis of Chapter I, Article II, ‘‘Obligations of Patients to the Their Physicians’’ in the American Medical Association’s (AMA) Code of 1847 (Bell & Hays [1847] 1999, pp. 325–327). Unfortunately, no similar chain of influence has been discerned in Rush’s writings on epidemics. Rush may have felt no need to lecture on the subject because his heroic attendance on epidemic-stricken Philadelphians during the Yellow Fever epidemic of 1793, like his radical bleeding treatments (which came to be known as ‘‘heroic medicine’’), had attained near-mythical status in American medical culture (Rush, 1794). Another reason why it is difficult to discern physicians’ understanding of their obligations during epidemics is that, except for the occasional comment by Rush, none of the figures central to the creation of modern Anglo-American medical ethics – Samuel Bard (1742–1821), Thomas Gisborne (1758–1846), John Gregory (1724–1773), Thomas Percival (1740–1804), Felix Pascalis Ouvie`re (1750?–1833), the co-author of the 1823 New York System of Ethics, and so forth – publicly discussed the question of doctors’ duties during epidemics. This is not to say that they were silent on the subject of ‘‘fevers’’ and various epidemic diseases (e.g., Pascalis Ouvie`re, 1819; Percival, 1768), it is rather that their discussions focused on medical issues, not on the ethics of practitioner conduct during epidemics. Until the mid-nineteenth century, codes of medical ethics were equally silent on the subject of medical conduct during epidemics. The sole exception is the Baltimore Code of 1832, which touches on it with a line in its preamble. ‘‘In the hour too, ‘when pestilence walketh in darkness’ [doctors] are seen mingling familiarly in scenes of death and despair and all are alike dependent upon them for the exercise of their skill and benevolence’’ (Medico-Chirurgical Society of Baltimore, 1832, pp. 2–3). Nonetheless, the duty of caring for the epidemic-stricken is noticeably absent from the duties listed in the Baltimore Code proper. Like the earlier 1823 New York Code, however, the Baltimore Code indirectly addresses duties that could be relevant to conduct during epidemics, specifically, the duty of confidentiality. The code states that a doctor has ‘‘a sacred obligation to conduct himself with the most scrupulous regard for secrecy y and never to divulge, except when compelled, in obedience to the laws of the country, the nature of the malady he is called upon to treat’’ (Medico-Chirurgical Society of Baltimore, 1832, Sec. I, Art. VII). However, it never addresses the question of whether the need to protect public safety might override obligations of confidentiality. Until 1847, no code of medical directly addressed the issue of medical ethics during epidemics.

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AN INDEFEASIBLE DUTY OF ATTENDANCE DURING EPIDEMICS: THE AMA’S ETHICS 1847–1976 The striking silence on the subject of doctors’ duties during epidemics before 1847 cries out for an explanation. Unlike earlier centuries, deontological discourse was commonplace and codes discussed such subjects as doctors ‘‘sacred obligations’’ to confidentiality. Since nineteenth-century doctors used the language of ‘‘duty’’ and ‘‘obligation’’ freely and frequently, there was no conceptual barrier preventing discussion of doctors’ duties during epidemics. American doctors, moreover, had reason to discuss the subject because Yellow Fever was endemic in the southern states and, from 1832 onward, cholera epidemics swept America nearly every decade (Rosenberg, 1962). Code writers thus had both the discourse and the occasion to address Fox–Huber–Wynia’s question about doctors’ duties to attend the epidemic-stricken. Yet, their codes of ethics were striking silent on the subject. Why? One factor was the dominance of epidemiological discourse, in particular the contagionism versus anti-contagionism controversy, which give the issue the flavor of an empirical rather than an ethical controversy. The subject must have seemed so unsettled and emotionally charged that code writers would have despaired at the prospect of reaching a consensus on the subject. An additional factor may have been the nineteenth-century predilection for indefeasible (or absolute) duties, like the ‘‘sacred obligation’’ of confidentiality. Defeasible duties, like Parker’s, might thus have seemed too contingent to merit a mention in a proper code of ethics. It is thus something of a shock to find that in 1847 the founding convention of the AMA unanimously passed, with neither controversy nor dissent, a code of ethics that declares authoritatively that doctors have an indefeasible medical ethical duty to attend to the epidemic-stricken. How and why did the AMA embrace an indefeasible duty of attendance during epidemics? Simply put, as John Bell (1796–1872), chair of the committee that drafted the code of ethics, explained to the AMA’s founding convention, the code is based on a principle of reciprocity. The code’s three chapters address: (1) the reciprocal duties of physicians and patients to each other; (2) the reciprocal duties of physicians to each other and to the profession of medicine; and (3) the reciprocal duties of the profession and the public to each other (Bell, [1847] 1999, p. 317; Bell & Hays, [1847] 1999, pp. 324–334). The founders of the AMA accepted a duty to attend the epidemic-stricken because they sought something in reciprocity; they

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sought something in return. They also accepted the duty because it followed as a logical correlate of other obligations that they had accepted. The AMA doctor’s first and primary obligation of physicians – which is stated in the opening line of the first chapter of the code – is Parker’s duty of attendance: the duty to ‘‘obey the calls of the sick’’ (Bell & Hays [1847] 1999, p. 324). Note that the first duty of a doctor is not to attend to patients or to patrons, their first duty is to obey the calls of any sick person who requests a doctor’s services – full stop, no qualifications. The doctor’s duty to attend to the sick person, to obey the calls of the sick, is thus unambiguously primary. In return for accepting the obligation to ‘‘obey the calls of the sick,’’ doctors expected the sick accept a reciprocal duty of obedience to their doctors: ‘‘The obedience of the patient to the prescriptions of his physician should be prompt and implicit. He should never permit his crude opinions as to their fitness, to influence his attention to them.’’ (Bell & Hays [1847] 1999, p. 326) Doctors thus were obligated to the calls of the sick when called and the sick, in return, have the obligation of attending to their doctor’s orders. These reciprocal obligations were paternalistic in the best and most humane sense of the term. For the physician was also obligated to ‘‘minister to the sick’’ mindful that ‘‘the ease, the health and the lives of those committed to their charge depend on their skill, attention and fidelity y . Every case y should be treated with attention, steadiness, and humanity’’ (Bell & Hays [1847] 1999, p. 324). The 1847 AMA Code is remarkably modern not only in its humane paternalism but in its characterization of the doctors duties as ‘‘professional.’’ Unlike earlier American Codes of Medical Ethics, the 1847 AMA Code is the first to characterize doctors’ duties toward their patients as professional obligations. These obligations are professional not only in being role-based, but in the sense that they extend beyond the physician–patient relationship to encompass the role of physicians with respect to the public and to the society-at-large. Thus, Chapter III of the 1847 AMA Code states that physicians have a professional obligation to the public to provide medical care to all sick persons, specifying that ‘‘individuals in indigent circumstances y cheerfully and freely,’’ i.e. ‘‘poverty y should always be recognized as presenting [a] valid claim for gratuitous service’’ (Bell & Hays [1847] 1999, p. 334). As the first code of medical ethics to state that doctors have a professional obligation to serve the medically indigent, and as the first code of ethics to state a virtually indefeasible professional duty to attend to obey the calls of any sick person who requests their services, the 1847 AMA Code naturally posed the Parker–Fox–Huber–Wynia question. Does the

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physician’s obligation to ‘‘obey the calls of the sick’’ apply during epidemics, when attending may place physicians’ lives and health at risk? The code answers unequivocally. The first line of the first section of Chapter III ‘‘Of the Duties of the Profession to the Public’’ states that, ‘‘As good citizens, it is the duty of physicians to be ever vigilant for the welfare of the communityy’’ (Bell & Hays [1847] 1999, p. 332). Just as the individual physician is duty bound to attend to the sick individual, the medical profession, collectively, is duty bound to attend to the welfare of the community. Physicians must thus offer gratuitous advice to the community about medical police (drainage, ventilation, etc.), public hygiene, quarantine and other ‘‘measures for the prevention of epidemic and contagious disease.’’ If these preventive measures should fail, if ‘‘pestilence prevails, it is [physicians’ professional] duty to face the danger, and to continue their labors for the alleviation of the suffering, even at the jeopardy of their own lives’’ (Bell & Hays [1847] 1999, p. 333). How did the authors of the AMA Code secure unanimous approval of such an unequivocal statement of an indefeasible professional obligation of attendance during epidemics? The strategy for securing a consensus is evident in the language of the code. The first three words ‘As good citizens’ acknowledge the political nature of the discourse that had dominated the debate for over a century; the next six words turn the debate to the new and neutral discourse of ethics asserting, ‘‘it is the duty of physicians y .’’ The list of duties that follows offers a compromise, amalgamating anti-contagionists’ concerns with the environmental causes of epidemics (e.g., drainage to control the mosquitoes that carry both malaria and Yellow Fever), with contagionists’ interests in quarantine to control the spread of the disease. Favoring neither side in the politicized epidemiological controversy, but acknowledging both, the code simply obligates physicians to advise their communities about ways of preventing epidemics – it never specifies the nature of the advice to be offered. The carefully crafted language was acceptable to contagionists and anticontagionists alike. Just as significantly, the professional duty to attend during epidemics is predicated upon the paternalistically humanist conception of the physician– patient relationship laid out in the first chapter of the code. On this conception, the goal of physicians’ skillful, attentive and faithful attendance is to protect not only the patient’s life and health, but also the patient’s ‘‘ease’’ (AMA [1847] 1999, p. 324). The concept of ‘ease’ was integral to the humanistic ethics of sympathetic care (the code uses the term ‘tenderness’) associated with the Enlightenment medical reformers by John Gregory and

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Thomas Percival. This ethics of sympathy had been widely disseminated in America by Bard and Rush, and by lead authors of the AMA Code, John Bell and Isaac Hays (1796–1879). Thus, in the opening chapter of the code, when Bell and Hays characterize a physician–patient relationship based on attentive tenderness aimed at preserving the ease of the patient, they also lay a new foundation for a professional obligation to attend to the epidemicstricken – the duty of alleviating suffering. For Parker – and even for many physicians and public health officials today – the goal of medical interventions during epidemics is to significantly impact morbidity or mortality. To use Parker’s eighteenth-century language, the focus of their interventions is to be of ‘‘utmost Consequence to the Recovery’’ of epidemic-stricken people. On this conception, physicians’ duty to treat the epidemic-stricken is linked to reasonable beliefs about the therapeutic efficacy of various medical interventions. However, the broader humanistic conception of the goals of medical intervention offered in the 1847 AMA Code opens the way for a new role for physician during epidemics. Physicians now have a duty to care tenderly for the sick, to see to their ‘‘ease’’ and to alleviate suffering. This offers physicians a role at the bedside of the epidemic-stricken, even when they lack medical means to alter the patient’s prospects for recovery. Beyond these lofty ethical ideals, the founders of the AMA expected a practical payoff for committing themselves to caring for the epidemicstricken. The 1847 AMA Code of Ethics was based on the principle of reciprocity. In exchange for their commitment to tend to the epidemicstricken, regular physicians expected reciprocity from the public. They expected ‘‘respect from the community’’ (Bell & Hays, [1847] 1999, p. 334). The mid-nineteenth century physicians who formed the AMA were ‘‘regular practitioners,’’ i.e., licensed practitioners who accepted the ideal of practicing scientific medicine based on ‘‘the aides actually furnished by anatomy, physiology, pathology, and organic chemistry’’ (Bell & Hays, [1847] 1999, p. 329). Nineteenth-century communities and state legislatures, however, were ambivalent about whom to trust with their health care, regular physicians or the members of rival schools of medicine like homeopaths. Many intellectuals and legislators favored homeopaths. Homeopaths did not bleed or purge; they did not engage in the illegal practice of dissecting cadavers; they did not experiment on animals; they did not wave chemical analyses to challenge time-honored home remedies and popular nostrums; and they did not lecture anyone about the evils of abortion. More practically, homeopaths did not propose expensive sewage schemes, demand the draining of swamps, or lecture about the evils of

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polluted water supplies; they did not preach about sanitizing milk and food supplies. Homeopaths were eminently less irksome than the regular practitioners who formed the AMA. Consequently, as regular practitioners noted at length in the 1847 code, neither the community, nor their patients, nor drug manufacturers seem to respect or reward the regulars’ efforts to practice scientific medicine based on anatomy, physiology, pathology and organic chemistry. Thus, in exchange for the ‘‘benefits accruing to the public directly and indirectly from the active and unwearied beneficence of the [regular medical] profession,’’ i.e., in exchange for undertaking the duty of attending to the epidemic-stricken and treating the medically indigent gratis, regular physicians believed that they were ‘‘justly entitled to the utmost consideration and respect of from the community’’ (AMA, 1847, p. 334). Motivated by this complex mix of moral reasons and prudential concerns, for the next one-hundred-and-ten years – through three major revisions (1903, 1912, 1957) – the AMA Code of Ethics stated, reiterated and strengthened the regular physician’s professional obligation to attend to the epidemic-stricken. Scholarly critics sometimes dismiss the AMA’s Code of Ethics as window dressing that had little effect on practitioner conduct. In fact, however, the few empirical studies of the conduct of American physicians show an exceptionally high level of compliance with the standards of conduct set forth in the code (see, e.g., Baker & Emanuel, 2000). More impressively, throughout this period (more specifically, until 1986), there was no apparent criticism of the conduct of the AMA or its members for failure to treat the epidemic-stricken (of the sort that surfaced in the 1980s, see, e.g., Freedman, 1988). This dearth of criticism is impressive because the AMA and its code of ethics became the pin˜ata of American medicine, critiqued by rivals and scholars frequently, gleefully and with abandon. Had the AMA or its members failed to live up to their obligation to attend the epidemic-stricken, critics would no doubt have harped on the discrepancy – just as seventeenth-century critics seized on the College of Physicians purported failure to attend to the epidemic-stricken to discredit the regular physicians of that era. Yet, although homeopaths, alternative practitioners and generations of scholarly critics leveled almost every conceivable criticism at the AMA, not a word was directed at the AMA, or its membership, for their conduct during epidemics. To the contrary, in this one respect homeopaths found the AMA and its code of ethics exemplary. They incorporated the exact words used in this section of the 1847 AMA Code of Ethics into their own code of ethics (American Institute of Homeopathy, 1888).

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From leaders of the AMA – like William Henry Welch (1850–1934, President of the AMA 1910–1911), who took charge of the efforts to fight the great Spanish Influenza during the epidemic of 1918 – to local physicians, to the proverbial ‘‘man in the street,’’ Americans accepted physicians’ indefeasible duty to treat the epidemic-stricken (see Huber & Wynia, 2004, p. W7). In the language of the 1912 AMA Code of Ethics, ‘‘When an epidemic prevails,’’ the profession and the public believed that the regular physician, the AMA member, was committed to ‘‘continue his labors for the alleviation of suffering people, without regard to the risk to his own health or to financial return’’ (AMA, 1912; Baker et al., 1999, p. 354). Unfortunately, from the 1870s onward, regular organized American medicine began to speak with a fragmented voice on many subjects – including medical ethics. Fragmentation occurred in 1872 when the Medical Society of the State of New York, spurred on by its President, Abraham Jacobi (1830–1919), broke from the AMA. Jacobi was leading public health reformer, or ‘‘sanitarian,’’ as public health reformers were called at the time, objected to the AMA’s Code of Ethics for a spate of reasons. Foremost among these were Jacobi’s attempt to ally with ‘‘all legally qualified practitioners of medicine’’ – a classification that, in New York State included homeopaths and other irregular practitioners – in order to lobby state legislators to empower public health boards to carry out sanitary reforms, and to prevent the passage of anti-vivisectionist legislation. As one delegate to the AMA’s 1879 convention complained, the line in the AMA Code of Ethics prohibiting consultation with homeopaths inhibited progress because regular ‘‘physicians must sometimes serve in sanitary organizations with irregular practitioners of medicine, or they must refuse to give the public the benefit of their knowledge of, and skill in, sanitary science’’ (Hibbard, 1879, p. 387). Sanitarians also wanted to free themselves from the constraints of confidentiality, believing that a sanitarian’s duty to the public outweighed the antiquarian, unscientific concepts, like confidentiality. ‘‘The period of individual health cobbling, has passed a century ago’’, Jacobi had proclaimed and today’s ‘‘great clinician is a sanitarian’’ (Jacobi, 1909, p. 88). From 1870 to 1903, a stew of issues congealed to unite sanitarians, specialists, scientific researchers, profiteers and scoundrels in a ‘‘liberal’’ alliance opposed to the AMA’s Code of Ethics. In 1886, specialists and researchers solidified their opposition to the AMA and its code by forming an alternative ‘‘purely scientific’’ national medical society, the Association of American Physicians (AAP). The first President of the AAP, Francis

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Delafield (1841–1915), proudly proclaimed the organization’s rejection of ‘‘medical ethics’’ in his inaugural address (Delafield, 1886). The AAP became the progenitor of America’s major specialty colleges, many of which were founded during this period (Stevens, 1999), and so American specialty medicine – including American public health medicine – inherited, as its birthright, an animus against professional ethical self-regulation, tending to define themselves as purely scientific organizations, that looked to the law for social guidance. The organizations that ultimately became the U.S. Public Health Service (USPHS) and the American Public Health Association, both formed in the 1880s, were influenced by the sanitarian led by the revolt against the AMA’s Code of Ethics and aligned themselves with the anti-ethics rebels. The USPHS’s first Supervising Surgeon or Surgeon General, John Maynard Woodworth (1837–1879, Surgeon General 1871–1879), adopted a military model for the service that encompassed military-style uniforms and the ideal of putting the public’s interests above all others. Tensions almost immediately arose over the confidentiality provisions of the AMA Code of Ethics. From 1873 onward, the Service (known after 1902 as the Public Health and Marine Hospital Service and after 1912 as the Public Health Service) began to issue reports on cholera and Yellow Fever. Reporting diseases, however, often required physicians to breach the duties of confidentiality detailed in the 1847 AMA Code. In principle, this tension could have been negotiated amicably since the AMA’s 1847 Code of Ethics treats the duty of confidentiality as defeasible, permitting the physician to breach confidentiality ‘‘when he is imperative required to do so’’ (Bell & Hays, [1847] 1999, p. 324). The 1847 Code even specifies that the duty of secrecy may be overridden ‘‘to give to the friends of the patient timely notice’’ of a terminal prognosis (Bell & Hays, [1847] 1999, p. 325). In practice, however, the code left it unclear whether the duty to warn the community of contagion overrides the duty to protect the confidentiality of the patient. Many regular AMA physicians gave precedence to their obligations of confidentiality to their fee-paying patients, rather than to the public and the Public Health Service. Tensions over confidentiality were exacerbated in 1903, when the AMA abandoned the social contract formulation of its code of ethics, replacing the concept of reciprocal duties with stipulations of ethical principle. Section 3 of the 1903 Code, ‘‘Secrecy to be Inviolate,’’ stated, ‘‘None of the privacies of individual or domestic life, no infirmity of disposition or flaw of character observed during medical attendance, should ever be divulged by physicians, except when imperatively required by laws of the state’’ (AMA, 1903; Baker

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et al., 1999, p. 336). Thus whatever the municipal health boards or the Public Health Service might ask physicians to report, except when these requests were backed by the full force of law, the AMA was requiring its members to honor their obligations of confidentiality to their patients over their duties to the community. By making the obligation of confidentiality virtually indefeasible, the AMA had staked out a position directly opposed to that embraced by the municipal boards of public health, the public health service and sanitarian reformers. Public health medicine, in turn, reciprocated in kind, rejecting the AMA Code of Ethics and turned to law and politics instead. A glimmer of hope for unifying American medical morality on issues of public health arose in 1912 when the AMA held out an olive branch by electing Abraham Jacobi as President (1912–1913). During Jacobi’s presidency, the AMA abandoned its indefeasible principle of confidentiality. The revised section on confidentiality in the 1912 Code stated: There are occasions when a physician must determine whether or not his duty to society requires him to take definite action to protect a healthy individual from becoming infected because the physician has knowledge, obtained through confidences entrusted to him as a physician, of a communicable disease to which the healthy individual is about to be exposed. In such a case, the physician should act as he would another to act towards one of his own family in like circumstances’’ (AMA, 1912; Baker et al., 1999, p. 346).

By 1912, therefore, Physicians had been released from the stringent ‘‘Secrecy to be Inviolate’’ constraints of the earlier code of ethics, but they were still free to keep their knowledge of ‘‘communicable disease’’ secret. Four decades later, the balance firmly tipped in favor of protecting public health. Chapter VIII of the 1955 Code introduced two new sections. Section I, ‘‘Physicians as Citizens’’ emphasized physicians obligations of citizenship including their obligation to ‘‘cooperate y with y authorities in the administration of sanitary laws and regulations’’ (AMA, 1955). Section 2, ‘‘Public Health’’ states that physicians’ obligations to the public override their obligations of confidentiality. ‘‘At all times the physician should notify the constituted public health authorities of every case of communicable disease under his care, in accordance with the laws, rules, and regulations of health authorities.’’ It then continues asserting that, ‘‘When an epidemic prevails, a physician must continue his labors, without regard to the risk to his own health’’ (AMA, 1958, p. 55). The 1955–1957 Code was to be the AMA’s last public reaffirmation of the physician’s indefeasible duty to attend to the epidemic-stricken ‘‘without regard to the risk to his own health.’’

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AMERICAN MEDICAL ETHICS AND EPIDEMICS FROM 1977 TO TODAY By mid-twentieth century the AMA’s Code had become a bulky and balky mix of annotated principles and opinions, cumbersome to use and difficult to interpret. Seeking to slim down, unify and simplify, in 1957 the code was reformulated as a set of ten principles supplemented by interpretive judgments and opinions issued by the AMA’s Judicial Council (later renamed the Council on Ethical and Judicial Affairs, or CEJA). The revised 1957 Code, like the 1955 Code, interpreted confidentiality as a defeasible principle that could be overridden to protect either an individual’s health or the public’s health. ‘‘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 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’’ (AMA Judicial Council, 1957; Baker et al., 1999, p. 356). Even after the 1955–1957 revisions, however, the AMA’s Code was too unwieldy to be of practical use. Two decades later, in 1975–1977, the AMA again attempted to prune its code. This time it was determined to do a more Draconian thinning. The committee ruthlessly edited out all material that ‘‘did not adequately reflect current conditions of medical practice y [or that] dealt with outmoded matters of medical etiquette that had long been unnecessary and were historical anachronisms’’ (AMA Judicial Council, 1977, p. 1). Apparently, the editorial committee believed that the AMA’s traditional statement of the physician’s duties to treat the epidemic-stricken ‘‘without regard to the risk to his own health’’ fell into one of these categories – so they deleted it. Some commentators have suggested that since ‘‘in 1972 the US Surgeon General had declared it time to ‘close the book’ on infectious diseases and by 1977 the profession was preparing to celebrate the global eradication of small pox, consideration of duties in epidemics probably did appear anachronistic’’ (Huber & Wynia, 2004, p. W8). Never was a deletion more inapposite. Within four years, the first cases of AIDS were reported in the U.S. (1981). Soon thereafter, the HIV virus was identified (1983). Clinical tests became available to detect the virus in 1985. The availability of clinical tests for HIV/AIDS immediately raised questions about physicians duties to breach confidentiality when ‘‘it becomes necessary in order to protect the welfare of the individual or the public,’’ a duty that had survived the 1975–1977 pruning of the AMA Code (AMA Judicial Council, 1977). Physicians petitioned the CEJA to find out whether they

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really had a duty to breach confidentiality to warn individuals who were at risk because of contact with an HIV-infected individual. In 1986, the CEJA issued ‘‘guidelines that should help in responding to questions regarding acquired immunodeficiency syndrome (AIDS)’’ (CEJA, 1986). It reaffirmed that: y physicians’ have an obligation to assist in notifying individuals who have been exposed to the infection y so that appropriate diagnostic tests can be performed; an individual thus notified should also be informed that the percentage of persons with positive y human immunodeficiency virus tests who will develop AIDS is unknown. However, a potentially or known infected individual has a duty to refrain from sexual practices or other activities that might result in further dissemination of the disease. Where testing for the HTLV-III/HIV antibody is indicated, informed consent should be obtained. The patient should know that the results may become part of the medical record. Confidentiality within the framework of applicable reporting laws and regulations must be safeguarded. When a diagnosis of AIDS is confirmed, management alternatives should be fully discussed with the patient. Health care professionals must be sensitive to the psychological needs of individuals with a positive HTLV-III/HIV antibody test and of symptomatic patients and may recommend appropriate support groups (CEJA, 1986).

Almost as an afterthought, the CEJA also touched on the issue of the physician’s duty to treat HIV/AIDS patients. Physicians and other health professionals have a long tradition of tending to patients afflicted with infectious disease with compassion and courage. However, not everyone is emotionally able to care for patients with AIDS. If the health professional is unable to care for a patient with AIDS, that individual should ask to be removed from the case. Alternative arrangements for the care of the patient must be made (CEJA, 1986).

To appreciate what happened next, it is important to understand that by the 1980s the AMA and the CEJA were no longer the sole or even the dominant voice of American medical ethics. A newly emergent interdisciplinary alliance of academics, administrators, lawyers, researchers and health professionals was striving to become a voice of moral idealism and conscience directing public policy and ethics in the biomedical sciences and health care. This alliance of ‘‘bioethicists,’’ as they came to be called, immediately challenged the CEJA’s claim that care for HIV-affected individuals should hostage to physicians’ ‘‘emotional ability.’’ They called for a less-defeasible statement of doctors’ duties to treat HIV-infected people (Annas, 1988; Arras, 1988; Daniels, 1988; Dunne, 1989; Emanuel, 1988; Fox, 1988; Freedman, 1988; O’Flaherty, 1991; Huber & Wynia, 2004; Pellegrino, 1987). The CEJA immediately began sounding out variations of a more robust restatement of physician’s duties with respect to treating HIV/AIDS patients. They also explored possible policies with respect to confidentiality

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and dealing with non-compliant HIV-positive patients who continued to engage in activities that endangered others – a category that included HIVpositive physicians and surgeons. As the CEJA’s correspondence for this period makes evident, some physicians regarded the CEJA’s discussion of a strong duty to treat HIV-positive patients as ‘‘grossly inappropriate, inflammatory, and uncalled for.’’ Surgeons in particular objected to being ‘‘forced to accept any patient with any type of illness.’’ Several surgeons insisted that, except in emergencies, they had the ‘‘right to pick and choose [their] cases’’ (a reference to Section 5 of the AMA’s Principles). Some surgeons objected that for the AMA to prohibit them from continuing to practice surgery after they had contracted HIV was discriminatory. As one surgeon angrily wrote, ‘‘I do not think that [internists and family practitioners] who are not at physical risk of for contracting the AIDS virus have any right, ethical, judicial or otherwise to lecture or dictate to those of us who are.’’ Another wrote, ‘‘Your opinions are biased against [HIV-infected] surgeons.’’ This correspondence, together with the bioethical outcry and the objections of AIDS advocacy groups shaped the 139 lines of tightly-argued prose that constitute the CEJA’s four-page 1987 report, Ethical Issues Involved in the Growing AIDS Crisis (CEJA, 1987). The CEJA was now fully aware that this report would be read not only by the medical community but also by AIDS activists, by the media, by the public and by bioethicists. Where the 1986 report was an internal memo addressed to physicians, the 1987 report was a public document. It opens with a discussion of the rights of HIV/ AIDS patients: y AIDS patients are entitled to competent medical service with compassion and respect for human dignity and to the safeguard of their confidences within the constraints of the law. Those persons who are afflicted with the disease or who are seropositive have the right to be free from discrimination (CEJA, 1987, p. 1).

The report then turns to the question of doctors’ duties to treat people afflicted with HIV/AIDS. The 1977 deletions had deprived the CEJA of any principled reason – or at least any reason stated in the AMA’s Principles of Medical Ethics – to justify a physician’s duty to treat people with HIV/ AIDS. To make matters worse, in the absence of a specific statement about the duty to treat the epidemic-stricken, another principle in the code – a principle that dated back to the 1912 version of the code – states, ‘‘A Physician may choose whom he will serve y [except in] emergencies’’ (AMA, 1912, Chap I, Sec. 4, in Baker et al., 1999, p. 347; AMA, 1977, Sec. 5, 4; AMA, 1980, Principle VI). Surgeons had referred to this principle when

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objecting to the CEJA’s exploration of a duty to operate on HIV/AIDS patients. The CEJA was thus attempting to assert a duty to treat HIV/ AIDS-stricken people in the face of an authoritative text that seemed to deny the existence of any such obligation. The CEJA dealt with this anomaly in a bold statement, seemingly inconsistent with text of the 1977 AMA Code of Ethics: ‘‘A physician may not ethically refuse to treat a patient whose condition is within the physician’s realm of competence solely because the patient is seropositive.’’ Deftly, perhaps desperately, the CEJA justifies this statement by calling upon tradition to override literal readings of the AMA Code of Medical Ethics. ‘‘The tradition of the American Medical Association, since its organization in 1847, is that ‘when an epidemic prevails, a physician must continue his labors without regard to the risk to his own health.’ (see Principles of Medical Ethics, 1847, 1903, 1912, 1947, 1955.) That tradition must be maintained y . Neither those who have the disease, nor those who have been infected with the virus should be subjected to discrimination based on fear and prejudice, least of all by members of the health care community (CEJA, 1987, p. 1).

The CEJA then rebuffs those physicians and surgeons who had read the line about physicians being ‘‘free to choose whom to serve’’ literally: The Council has always interpreted this Principle as not supporting illegal or invidious discrimination. Thus it is the view of the Council that [the principle of free choice] does not permit categorical discrimination against a patient based solely on his or her seropositivity (CEJA, 1987, p. 2).

The CEJA had thus invoked the principle of non-discrimination, with its resonance of litigious civil rights issues, to counter the notion that surgeons had a right to ‘‘pick and choose patients’’ – an action they now characterized as ‘‘discrimination’’ against individuals with HIV/AIDS. The topic of discrimination was also relevant to the other issue surgeons had raised in their correspondence with the CEJA: ‘‘discrimination’’ against HIV/AIDS-infected surgeons who wished to continue practicing surgery. In dealing with this issue, the CEJA invoked the principle that ‘‘patients are entitled to expect that their physicians will not increase their exposure to the risk of contracting infectious disease, even minimally.’’ Thus, the CEJA reasoned: A physician who knows that he or she is seropositive should not engage in any activity that creates a risk of transmission of the disease to others. A physician who has AIDS or is seropositive should consult colleagues as to which activities the physician can pursue without creating a risk to patients (CEJA, 1987, p. 4).

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HIV-positive physicians were thus free to continue to practice, as long as doing so does not increase the risk to their patients, even minimally. With respect to the original question about the physician’s duty to protect individuals and the public, which had sparked the CEJA’s first report on HIV/AIDS, the following quite specific guidelines were stipulated. Physicians are ethically obligated to respect the rights of privacy and of confidentiality of AIDS patients and seropositive individuals. Where there is no statute that mandates or prohibits the reporting of seropositive individuals to public health authorities and a physician knows that a seropositive individual is endangering a third party, the physician should: (1) attempt to persuade the infected party to cease endangering the third party; (2) if persuasion fails, notify authorities; and (3) if the authorities take no action, notify the endangered third party’’ (CEJA, 1987, p. 4).

The CEJA’s 1987 report was a watershed. Almost immediately thereafter, both the American College of Emergency Physicians (ACEP) and the American College of Physicians (ACP) affirmed a duty to treat all patients (American College of Emergency Physicians [1987] 1999; Brody, Rothstein, McCullough, & Bobinski, 1999, p. 225). Similar statements followed soon from the American Academy of Neurology ([1992]; Brody et al., 1999, p. 398); the American College of Obstetricians and Gynecologists ([1993], Brody et al., 1999, pp. 451–452); and the American Urological Association ([1991, 1995, 1997], Brody et al., 1999, p. 1008). The ACP’s recommendations were incorporated into the American College of Physicians Ethics Manual in a section entitled ‘‘Medical Risk to the Physician’’ – a full and thoughtful discussion of physicians’ obligations to the epidemic-stricken. It is unethical for a physician to refuse to see a patient solely because of medical risk, or perceived risk, to the physician. Especially since the late 19th century, the ethical imperative to provide care has overridden risk to the treating physicians. This was especially true in the early 20th century when many infections caused uncontrollable disease. In recent decades, with better control of such risks, generations of physicians have been trained when risk has not been a prominent concern. Recently, however, with the appearance of the acquired immunodeficiency syndrome (AIDS), this has changed, necessitating reaffirmation of the ethical imperative and related concerns y . Health professionals and institutions are obligated to provide competent and humane care to all patients, the denial of appropriate care to a class of patients is unethical y and HIV testing should be done only when it will benefit the patient or contacts to whom the organism may have been transmitted or for the protection of the public’’ (ACP, 1989, pp. 248–249).

The contrast between the ACP’s treatment of physician’s duties during epidemics and the duties articulated in the various editions of the AMA’s Code of Ethics (updated 1989, 1992, 1994 and 1996) is instructive. As of the last year of the twentieth century, the AMA’s position on HIV-infected physicians

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remained essentially unchanged, as did its position on confidentiality (CEJA, 1999). Its position on the duty to test and to treat people with HIV/AIDS, however, was formulated in the last of eight paragraphs of Section 2.23 of its code of ethics, entitled ‘‘HIV testing.’’ The duty to treat HIV/AIDS patients was no longer indefeasible; like the duty of confidentiality, it could now be overridden to protect physicians against unnecessary exposure to HIV. When a health care provider is at risk for HIV infection because of y contact with potentially infected bodily fluids, it is acceptable to test the patient for HIV infection even if the patient refuses consent. When testing without consent is performed in accordance with the law, the patient should be given the customary counseling y . It is unethical to deny treatment to HIV-infected individuals because they are HIV seropositive or because they are unwilling to undergo HIV testing, except in the instance where HIV status is vital to the appropriate treatment of the patient. When a patient refuses to be tested after being informed of a physician’s medical opinion, the physician may transfer the patient to a second physician who is willing to manage the patient’s care in accordance with the patient’s preferences about testing (CEJA, 1999, pp. 70–71).

AMA Code of Medical Ethics Principles I and IV were cited to justify this statement. Principle I states, ‘‘A physician shall be dedicated to providing competent medical service with compassion and respect for humanity.’’ Principle IV states, ‘‘A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences within the constraints of the law’’ (CEJA, 1999, p. xiv). Treatment denials thus can be read as a violation of Principle I, the principle of providing competent compassionate treatment, or Principle IV, the principle of respecting patients’ and colleagues’ rights. Intriguingly, given a somewhat different emphasis, these same principles – providing competent compassionate treatment; respecting patients and colleagues’ rights – also justify the right to test patients for HIV without their consent, and the physician’s right to refuse to treat patients who decline to be tested. Thus, in striking contrast to both the CEJA’s (1987) position as well as the position taken in the ACP’s Physician’s Ethics Manual, by the end of the 20th century the AMA Code of Ethics offered only the vaguest of reasons for prohibiting treatment denial to individuals with HIV/AIDS. In 1847 the AMA Code of Ethics had stood as a beacon of clarity, authoritatively resolving the vexing issue of physicians’ professional obligations ‘‘when pestilence prevails.’’ In the ensuing century and one-half, the AMA Code devolved from a model of clarity to a semi-consistent swirl of vaguely justified positions. A few islands of clearly stated guidance stand out in this fog: HIV-positive physicians were not to endanger their patients; patients were not to unnecessarily endanger physicians by refusing HIV testing;

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confidentiality was defeasible, readily overridden by a duty to protect the public, individuals and health care practitioners; physicians, however, were required to treat HIV/AIDS patients. Yet these few clear positions are unclearly and ambivalently justified; worse yet, they offer no moral guidance about how physicians are to conduct themselves when the next pandemic surfaces – anthrax, avian influenza, Ebola virus, SARS, or some as yet unnamed but slowly evolving future pandemic. The regular practitioners who had formed the AMA in the mid-nineteenth century had courted public respect and professional legitimacy with a clear and clearly indefeasible statement of physician’s obligations to treat the epidemic-stricken ‘‘even at jeopardy of their own lives.’’ At the end of the twentieth century, the AMA appears willing to risk public respect and professional legitimacy by disguising an increasing unwillingness to chance jeopardizing their health in vaguely worded technicalities. In this observer’s view, professional medical organizations owe to their members and to the public to engage in a discussion of the nature and extent of professional duties during epidemics. This discussion should frankly address the pivotal question about health care providers’ professional duties to attend to the epidemic-stricken. Do health care professionals have a duty to attend, not only HIV/AIDS patients, but to any epidemic-stricken individual or group? If so, is this duty defeasible? May it be overridden, if health care professionals cannot provide effective therapeutic interventions for limiting morbidity or mortality? Or, does this obligation obtain even if the health care provider can do no more than ‘‘ease’’ they dying of the epidemic-stricken? More pivotally still, is there (as Parker thought) some level of risk to the life or health of the health care professional that overrides the duty to treat the epidemic-stricken, or is the duty to attend indefeasible? From 1666 onward, the tradition in Anglo-American medical organizations has been to provide health care for the epidemic-sicken during pandemics in which the level of mortality was between ten to twenty percent of the population. Are contemporary health care professionals willing to accept the same level of risk? Are they willing to accept the potentially higher level of risks posed in a post-9/11 world in which bioterrorists can unleash designer pathogens? The great tradition of the American health professions has been to draw on their experiences during past epidemics to prepare their members to accept their duties during the next epidemic. In our recent past, we have confronted AIDS, anthrax, Ebola, and SARS. The time to discuss the ethical issues raised by these experiences is now – not in the midst of the crisis precipitated by the next pandemic.

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ACKNOWLEDGMENTS The author would like to thank his research assistant, Erica Selli, for her invaluable assistance in preparing this chapter, and his colleague, Sean Philpott for his careful reading of the manuscript and his helpful suggestions.

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Fox, D. (1988). The politics of physicians responsibilities in epidemics: A note on history. Hastings Center Report, 18(2), 5–9. Freedman, B. (1988). Health professions, codes, and the right to refuse HIV-infectious patients. The Hastings Center Report, 18(2), S20–S55. Garcia-Ballester, L. (1993). Medical ethics in transition in the Latin medicine of the thirteenth and fourteenth centuries: New perspectives on the physician–patient relationship and the doctor’s fee. In: A. Wear, J. Geyer-Kordesch & R. French (Eds), Doctors and ethics: The earlier historical setting of professional ethics (pp. 38–71). Amsterdam: Rodopi. Grell, O. (1993). Conflicting duties: Plague and the obligations of early modern physicians towards patients and the commonwealth in England and the Netherlands. In: A. Wear, J. Geyer-Kordesch & R. French (Eds), Doctors and ethics: The earlier historical setting of professional ethics (pp. 131–152). Amsterdam: Rodopi. Hibbard, J. (1879). The relations of the code of ethics to State and Municipal Sanitary Organizations. Transactions of the American Medical Association, 30, 383–387. Hodges, N. ([1672] 1721). Loimologia: Or, an historical account of the plague in London in 1665: With precautionary directions against the like contagion. To which is added, an essay on the different causes of pestilential diseases, and how they became contagious by John Quincy, M.D. London: E. Bell. Hosack, D. (1818). Funeral address for Dr. James Tillary ð1756–1818Þ ðdelivered on May 26, 1818Þ. New York: University of New York. Huber, S., & Wynia, M. (2004). When pestilence prevails: Physician responsibilities in epidemics. American Journal of Bioethics, 4(1), W5–W11. Jacobi, A. (1909). The modern hippokrates. The New York State Journal of Medicine, 9, 81–90. Jewson, N. D. (1974). Medical knowledge and the patronage system in eighteenth century England. Sociology, 8, 369–385. Jewson, N. D. (1976). The disappearance of the sick man from medical cosmology. Sociology, 10, 225–244. Jonsen, A. (2000). A short history of medical ethics. New York: Oxford University Press. Keiser, G. (2003). Two medieval plague treatises and their afterlife in early modern England. Journal of the History of Medicine and Allied Sciences, 58(3), 292–324. Kopperman, P. (2004). Venerate the lancet: Benjamin Rush’s yellow fever therapy in context. Bulletin of the History of Medicine, 78, 539–574. Marx, K. ([1848] 1972). Manifesto of the Communist Party. In: R. Tucker (Ed.), The MarxEngels Reader (pp. 331–362). New York: W.W. Norton & Company Inc. McNeill, W. (1976). Plagues and peoples. New York: Doubleday. Medico-Chirurgical Society of Baltimore. (1832). A system of medical ethics, adopted by the Medico-Chirurgical Society of Baltimore being the Report of the committee on ethics and published by the Order of the Society. Baltimore: Medico-Chirurgical Society of Baltimore (printed by J. Lucas and E. K. Deaver). Molloy, J. (1887). Royalty restored; or, London under Charles II. London: Ward & Downey. http://www.worldwideschool.org/library/books/hst/english/RoyaltyRestoredorLondonunderCharlesII/chap12.html (accessed on 1/30/2006). Moore, A., & Moore, D. (2004). The Great Plague: The story of London’s most deadly year. Baltimore: The Johns Hopkins University Press. O’Flaherty, J. (1991). The AIDS patient: A historical perspective on the physician’s duty to treat. Pharos, (Summer), 13–16.

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Ouvie`re, F. (1819). A statement of the occurrences during Malignant Yellow Fever in the city of New York in the summer and autumnal months of 1819; and of the check give to its progress by the Board of Health: With a list of cases and names of sick persons; and a map of their places of residence within the infected and proscribed limits: With a view of ascertaining, by comparative arguments, whether the distempter was engendered by domestic causes, or communicated by human contaigon from foreign ports. New York: William A. Mercein. Parker, S. (1715). An essay upon the duty of physicians and patients, the dignity of medicine, and the prudentials of practice in two dialogues. London: Henry Clements [NB Published anonymously: Attributed to Parker by the National Library of Medicine.]. Pellegrino, E. (1987). Altruism, self-interest, and medical ethics. JAMA, 258, 1939–1940. Percival, T. (1768). On the disadvantages which attend the inoculation of children in early infancy. London: J. Johnson & T. Cadell. Porter, D., & Porter, R. (1989). Patient’s progress: Doctors and doctoring in eighteenth-century England. Stanford: Stanford University Press. Rosenberg, C. (1962). The cholera years: The United States in 1832, 1849, and 1866. Chicago: University of Chicago Press. Rush, B. (1794). An account of the bilious remitting yellow fever, as it appeared in the city of Philadelphia, in the year 1793A. Philadelphia: Thomas Dobson. Rush, B. (1951). The letters of Benjamin Rush. Princeton: Princeton University Press. Slack, P. (1979). Mirrors of health and treasures of poor men: The uses of the vernacular medical literature of Tudor England. In: C. Webster (Ed.), Health medicine and mortality in the sixteenth century (pp. 371–380). Cambridge: Cambidge University Press. Slack, P. (1985). The impact of plague in Tudor and Stuart England. London: Routledge. Stevens, R. (1999). The challenge of specialism in the 1900s. In: R. Baker, A. L. Caplan, L. L. Emanuel & S. R. Latham (Eds), The American Medical Ethics Revolution: How the AMA’s Code of Ethics has transformed physicians’ relationships to patients, professionals, and society (pp. 70–90). Baltimore: Johns Hopkins University Press. Thomson, G. (1665). Loimologia, a consolatory advice and some brief observations concerning the present pest. London. Wallis, P. (2006). Plagues, morality and the place of medicine in early modern England. English Historical Review, 121, 1–24. Wear, A. (1993). Medical ethics in early modern England. In: A. Wear, J. Geyer-Kordesch & R. French (Eds), Doctors and ethics: The earlier historical setting of professional ethics (pp. 98–130). Amsterdam: Rodopi. Wear, A. (2000). Knowledge and practice in English medicine, 1550–1680. New York: Cambridge University Press. Zuckerman, A. (2004). Plague and contagionism in eighteenth-century England: The role of Richard Mead. Bulletin of the History of Medicine, 78, 273–308.

CHAPTER 6 PHYSICIAN PROFESSIONALISM AND PREPARING FOR EPIDEMICS: CHALLENGES AND OPPORTUNITIES$, $$ Matthew K. Wynia, Jacob F. Kurlander and Shane K. Green ABSTRACT Physicians are instrumental to our national defense against epidemics, whether natural or bioterror-related. Broadly speaking, they are obligated to help rapidly identify threats, prevent the spread of disease, and care for infected patients. Each task presents ethical challenges, including the need to address access to care, balance the medical needs of individuals and communities, and ensure that health professionals continue to treat infectious patients in spite of the risk they present. If physicians can acknowledge these duties and meet these challenges, they have an opportunity to strengthen medicine’s public trust and professional identity.

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This essay contains adapted passages from two earlier papers by MKW and other co-authors (Huber & Wynia, 2004; Wynia & Gostin, 2004). $$ The views and opinions contained in this article are those of the authors and should in no way be construed as representing official policies of the American Medical Association. Ethics and Epidemics Advances in Bioethics, Volume 9, 135–161 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09006-6

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[Dr. Rieux] knew that the tale he had to tell, could be only the record of what had to be done, and what assuredly would have to be done again in the never ending fight against terror and its relentless onslaughts, despite their personal afflictions, by all who, while unable to be saints but refusing to bow down to pestilences, strive their utmost to be healers. Albert Camus (1991, p. 308), The Plague. It is our vocation to save life. It involves risk but when we serve with love, that is when the risk does not matter so much. When we believe our mission is to save lives, we have got to do our work. Dr. Matthew Lukwiya, Superintendent of a Ugandan missionary hospital; died of Ebola hemorrhagic fever, December 2000 (A Vocation to Save Life: Matthew Lukwiya’s Work to Save Uganda’s Victims of Ebola Virus, 2001).

THE MODERN FACE OF EPIDEMICS: NOVEL INFECTIOUS AGENTS AND BIOTERRORISM In 2001, mailed Anthrax spores killed 5, sickened 17, and caused hundreds of thousands of Americans to take antibiotics or get a prescription ‘‘just in case’’ – there were relative increases in US utilization for ciprofloxacin of approximately 160,000 prescriptions in October, and for doxycycline of approximately 216,000 prescriptions in October and November (Shaffer et al., 1993). And yet, in the midst of this panic, two postal workers who, in retrospect, clearly should have received early treatment for inhalation of anthrax, were sent home untreated from an emergency room – and died. In 2003, an outbreak of a novel coronavirus causing Severe Acute Respiratory Syndrome (SARS) infected approximately 8,400, cost 813 lives (Emanuel, 2003) and between 40 and 140 billion dollars in economic damage worldwide (Nesmith, 2003), and rattled the public’s sense of safety for a time. In Taiwan, 95% of those infected were health professionals (Sande & Ronald, 2004). In Toronto, where 44 people died, 45% of probable or suspect cases were among health professionals (Branswell, 2003; Health Canada Population and Public Health Branch, 2003). Subsequent analyses have shown that the infection, previously thought to be spread through close physical contact, may be transmitted through the air (Yu et al., 2004). In late 2003, a strain of avian flu emerged that contains a relatively novel combination of antigens (H5NI). The disease decimated Chinese chicken stocks (Elegant, 2004), and as of late February 2004, 32 people had become infected, and 22 died, through direct exposure to infected birds (World Health Organization, 2004). While little person-to-person

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transmission of the H5N1 strain has occurred to date, related but less virulent strains of avian flu have been transmitted from person to person (Perez-Pena & Altman, 2004). If the H5N1 strain were to mutate so as to spread easily while retaining its virulence, the novelty of the pathogen could allow for rapid spread worldwide due to lack of immunity; the last time that happened, in 1918, a true influenza pandemic occurred in which more than 20 million people died worldwide, including more than 500,000 Americans.

THE MEDICAL PROFESSION’S ROLE IN PREPARING FOR BIOTERRORISM AND OTHER EPIDEMICS In response to the aforementioned threats, preparedness initiatives have focused largely on improving the public health system, which is appropriate since for decades the US government has starved public health agencies of needed resources (Institute of Medicine (IOM), 1988; Centers for Disease Control and Prevention (CDC), 2001; Heinrich, 2001; IOM, 2002b). However, effective preparation for bioterrorism and new epi demics will also require individual physicians to play critical roles. In this paper, we call attention specifically to contagious diseases – unlike anthrax, which although dangerous cannot be transmitted person to person – since many experts reserve their deepest fears for transmissible diseases such as smallpox, plague, hemorrhagic fevers (e.g., Ebola, Marburg, Lassa, and Crimean-Congo), and new (e.g., SARS) or designer viruses and bacteria (CDC, 2000). Thinking clinically, what are the professional obligations of physicians in handling contagious diseases? Physicians must help to rapidly identify threats, prevent the spread of disease in the population, and care for infected patients. As Wynia and Gostin (2004) note, these three tasks – which may be written shorthand as detection, containment, and treatment – are vital to the effective management of any contagious epidemic. Yet each poses specific ethical challenges, and also opportunities, to physicians both individually and as an organized profession. In this paper, we describe a series of professional challenges related to detection, containment, and treatment of contagious illness that must be met with physician action and leadership to ensure preparedness for the next epidemic, whether it occurs naturally or as a result of another bioterror attack.

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DETECTION In December 1997, public health officials in Westchester County, New York identified several cases of rubella. The outbreak began to spread through the county along train lines and through work sites, and was eventually identified in 14 towns, cities and villages. New York City issued a health alert. Eventually, at least 95 cases occurred, primarily among unvaccinated Hispanic migrant workers (CDC, 1999). Notably, officials attributed low receipt of rubella vaccine during and after the outbreak to ‘‘Hispanic communities’ distrust of persons affiliated with the government because of immigration concerns’’ (CDC, 1999). The fear that health care services and immigration authorities are somehow linked may be widespread and can have significant effects on immigrants access to health care. A 1997 study in California found that fear of the INS was the number one reason immigrants who are eligible for Medicaid fail to apply (Schlosberg & Wiley, 1998).

A rubella outbreak among undocumented workers may seem rather trivial. But what if a disease to which the general public is widely susceptible were to emerge in this population? The outcome could be much different. In some bioterror scenarios, such as an aerosol release of an infectious pathogen into a crowd, simultaneous widespread infections would mark an attack; if this were the case, then limiting the outbreak through early detection might be less relevant (though early recognition and treatment of the illness might still save lives). But smaller-scale attacks are potentially much easier for terrorist organizations to organize, finance, and carry out (Bozzette et al., 2003). As the anthrax mailings demonstrated, even relatively small attacks can provoke widespread anxiety and disruption. In a stealth bioterror attack, early detection becomes critically important, as it is in stemming naturally occurring outbreaks (Chinese SARS Molecular Epidemiology Consortium, 2004). The public health system, the nation’s primary mode of identifying emerging epidemics, sometimes appears to operate independently of physicians, yet it relies heavily on physicians’ diligence (and, it must be noted, physicians rely, reciprocally, on the public health system to ensure the health of their patients). While no one physician is likely to encounter enough cases of an emerging disease to note a significant trend, isolated cases, which taken together mark an outbreak, first appear in clinics, emergency departments, and doctors’ offices. Therefore, three sequential actions that involve physicians are necessary for the public health system to detect an emerging epidemic: (1) potential victims must be able to access the health care system; (2) health care workers must recognize the symptoms of a potential epidemic pathogen; and (3) the public health system must be notified as cases are identified within the health care system.

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Understanding the challenges of detection, therefore, requires closer examination of each of these three factors, namely access to health care, recognition, and reporting. Access to Health Care Perhaps our nation’s greatest challenge to preparedness for epidemics comes from the danger posed by a large and persistent uninsured population – over 43 million people and growing (IOM, 2004). Granted, anyone, insured or not, might serve as an unwitting biological weapon, but because of their relative inability to obtain care, the uninsured would be especially attractive and effective vectors for bioterror agents. Uninsured individuals tend to delay entering the health care system for as long as possible (IOM, 2001), and although many bioterror-related illnesses are severe, the uninsured discriminate poorly between necessary and optional care, avoiding both equally (Siu et al., 1986). In fact, many uninsured patients die before being evaluated in the health care system (Schroeder, 1999; American College of Physicians and American Society of Internal Medicine, 1999; IOM, 2002a). Furthermore, the great majority of the uninsured are employed, with daily contacts in the workplace and throughout society (IOM, 2004). Through routine contact with others, an infected but uninsured, and therefore likely untreated, person would pose a risk to the insured and uninsured alike (Wilson, 1995). A small-scale release of an infectious agent into a community with a high rate of uninsurance could be devastatingly effective, and even more so if targeted at illegal immigrants or others with additional (e.g., cultural or language) barriers to care. Sadly, such a nightmare scenario is not merely speculative; as illustrated by the vignette above, naturally occurring epidemics often start or gain a foothold among the uninsured and other vulnerable populations and then spread into the general population (Prothero, 1977; Slesinger, 1992; Gellert, 1993). At all times, including but not limited to those in which bioterror is a legitimate threat, professional ethics explicitly calls upon physicians to promote universal access to care (President’s Commission for the study of ethical Problems in Medicine and Biomedicine and Behavioral Science Research, 1983; Council on Ethical and Judicial Affairs (CEJA), 2002b; Gruen, Pearson, & Brennan, 2004). Yet our nation, alone amongst developed nations, has been unable or unwilling to accomplish this (IOM, 2001). Indeed, the stated desire to provide universal coverage is nearly ubiquitous (IOM, 2004), but no clear consensus has emerged among physicians or the public at large on the means of enacting a universal insurance program. In

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the face of today’s threats, however, maintaining barriers to care should be considered unacceptable, morally, medically, and politically. Thankfully, this has not gone completely unacknowledged (Trotter, 2003). In the aftermath of the September 11 attacks, for example, New York ordered its health care system to provide care to all possible victims (Yacknin, 2001). New York State Health Commissioner Antonia C. Novello, MD, MPH, declared to all providers of care, ‘‘Thou shalt not ask, ‘who will pay for this?’’’ when responding to potential victims of the attacks (Novello, 2002). Over the next four months, New York’s special Disaster Relief Medicaid program enrolled and cared for almost 400,000 people (Janison & Hetter, 2002) through a dramatically streamlined application process for Medicaid and by providing additional funding for the uninsured. The public, the government, and the medical community widely approved of these actions as appropriate given the threat (NEJM Editors, 2001; Russakoff, 2001). Although short of providing universal insurance, New York set a valuable precedent and health professionals should be pressing federal and state officials to follow suit with three actions in particular. First, they should encourage anyone suffering from symptoms of contagious illness to present for evaluation and physicians must ensure that those who do so are treated without prejudice. Second, health professionals should press for improved funding for the screening and treatment of all such patients. Specifically, hospital emergency departments and other facilities that see large volumes of uninsured patients should receive increased resources as part of our Homeland Security initiatives (Janofsky, 2003). Resources can be targeted toward contagious illnesses, but since patients may not know in advance whether an illness is infectious, these efforts ultimately will need to be broad-based. Third, the current policy focus on racial and ethnic health disparities should be used to build a culturally sensitive primary care system in which all patients feel welcome (Smedley, Stith, & Nelson, 2003). No amount of funding will effectively give access to care for all if large swaths of the population, such as recent immigrants, remain deeply mistrustful of the health care system. Indeed, special efforts should go toward ensuring that the immigration system and the health care system remain clearly separated. In particular, any efforts to enlist health professionals in immigration enforcement must be vigorously opposed (Ziv & Lo, 1995). The threat of epidemics may seem an unlikely spur toward universal access to health care, but historically, sweeping health care reforms have most often occurred in anticipation of or in the aftermath of epidemics and wars. For example, public health committees were first established and community doctors hired in 14th century Europe to address the plagues then

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decimating the population (Geraghty & Wynia, 2000). In the late 18th century, France established the first true national health care system in the wake of public health harms suffered during the French Revolution (Ramsay, 1996). Many other European nations then followed France’s lead, establishing universal coverage programs, in part because they considered population health to be in their nations’ economic and security interest and therefore a national obligation. England, however, provides an interesting contrast: Its prolonged lack of war or widespread epidemic between the 18th century and the First World War led to a relative indifference to universal health care access among English physicians and public health officials into the early 19th century (Geraghty & Wynia, 2000). Ultimately, it was the prospect of invasion during World War II (WWII) that led English doctors and politicians to conclude that state involvement in the health care system was justified. Soon after, proposals for federally funded universal health insurance were made in Canada, during post-WWII reconstruction efforts. In this historical context, the United States’ failure to provide universal insurance is perhaps more understandable. The US has not faced a significant threat of invasion, nor have modern plagues appeared to seriously stress social structures and productivity. A push was made in the US during WWII, when the Wagner-Murray-Dingell Bill, which would have provided national health insurance, was brought repeatedly, but unsuccessfully, before Congress. Yet, while the country’s persistently libertarian stance on health care has prevailed in the past, the present ‘‘war on terror’’ and the threat of bioterrorism to national security may finally provide a necessary stimulus for reform. It is becoming increasingly apparent that the uninsured can undermine public health in general, not least because the enormous cost of providing inefficient emergency room care to a large uninsured population drains money from other important medical and social programs (IOM, 2004). Today, calls to close the access gap are growing, for reasons of national security and solidarity, which suggests that an opportunity for progress may be at hand (Halstead & Lind, 2001; Wynia & Gostin, 2002; Hearne & Segal, 2003; Trotter, 2003). Recognition As opposed to chemical agents, biological weapons often cause symptoms only after a number of days (Franz et al., 1997). Patients infected with smallpox, for example, do not become symptomatic for at least a week, and viral hemorrhagic fevers generally are latent for at least four days (Franz et al., 1997). Consequently, physicians, rather than paramedics, are likely to

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be the first to encounter victims. From the perspective of both public and individual patient health, it is imperative that physicians recognize a potential victim of bioterror-related illness when one presents. Most physicians have never encountered cases of smallpox, hemorrhagic fever, plague, or other illnesses caused by probable bioterror agents and are unlikely to reflexively diagnose them. Furthermore, diagnosis of bioterrorrelated diseases can be complex, as many have an onset that is very similar to the onset of many widespread and relatively mild illnesses. And, of course, novel syndromes, such as may be caused by an engineered pathogen, would be virtually impossible to recognize initially. Moreover, physicians are trained to give the most parsimonious and likely diagnosis for a given set of symptoms and these diseases are rare. For these reasons, physicians will likely miss the initial cases of an attack unless they take reasonable steps to heighten their awareness of the threat. On the other hand, physicians are also trained explicitly to consider unlikely but very dangerous diagnoses; agents of bioterrorism and epidemics clearly fall in this category. While heightened vigilance for contagious illness carries the potential for misdiagnoses, the danger of missing these diagnoses merits that risk. Ethically, physicians have an ancient obligation to continuous lifelong learning (CEJA, 2002b). Today, this learning must include training in how to respond to the bioterror threat. Bioterror training for most physicians should focus on general skills, developing heightened awareness of suspicious syndromes, understanding the role physicians play in the public health and emergency response systems, and providing information on how to rapidly obtain specialty consultations from the public health system. This task has been made easier since September 11 by numerous awareness and education campaigns. Comprehensive online resources targeted to physicians have been assembled by the CDC (at www.bt.cdc.gov), the American Medical Association (AMA) (2003), the American College of Physicians (2004), and the ‘‘physicians for physicians’’ group, World Medical Leaders (2004). By availing themselves of these and other learning opportunities, physicians will be better prepared to respond appropriately and effectively to a bioterror attack. Reporting The importance of physicians’ independently reporting cases of diseases is underscored by the World Medical Association’s (2002) assertion in their Declaration of Washington on Biological Weapons that ‘‘any [one] physician may see only one or a few cases and may not recognize that an outbreak

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is occurring.’’ Indeed, every reported case in an outbreak is instrumental in identifying it as such and in averting potential disaster. The failure of Chinese physicians and public health officials to report initial cases of SARS contributed significantly to the worldwide spread of that outbreak. No sooner had efforts begun to improve their reporting system than avian influenza surfaced in China. US physicians should heed the Chinese experience, especially in light of a recent meta-analysis of 33 studies on infectious disease reporting in the US, which found that only 79% of cases of TB, AIDS, and other sexually transmitted diseases, and only 49% of other infectious diseases studied, were reported (Doyle, Glynn, & Groseclose, 2002). A blend of systemic, personal, and professional shortcomings account for physicians’ poor track record with respect to reporting. Organizational and technological changes to enable seamless public health notification could bring immediate improvements in this regard, as some physicians may be put off reporting by the administrative burden it currently entails. Yet, ultimately, health care professionals bear the responsibility for seeing that reports are made, whether or not reporting is made easier. Physician performance in doing so, however, may be further hindered because they may be unaware of requirements on reporting, may believe it to be irrelevant to their primary task of patient care, or may simply be unconvinced of its value (Fox, 1986; Rojas, 2001). The importance of reporting must therefore be instilled into physicians’ sense of professional responsibility. To that end, medical schools and professional organizations will have key roles to play, through the teaching and steady affirmation of codes of ethics and the underpinnings of professionalism, which clearly link professionalism to a set of civic obligations. Medical professionals have a collective responsibility to protect their communities, as well as the individuals within them, from health threats. Reporting is the key to fulfilling this obligation. Public health officials should, in turn, reinforce the benefits of living up to this obligation by updating physicians regularly on how their reports are being used to safeguard public health.

CONTAINMENT ‘‘In 1907, an apparently healthy woman, Mary Mallon, was involuntarily admitted to the New York City Health Department’s Detention Hospital, and held there, with the subsequent affirmation of a New York court, for a total of three years based upon concerns about her infectious state for typhoid fever. The conditions of her release specified that she not engage in any occupation that would bring her into contact with food, but she

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accepted a job as a cook at a [Manhattan] hospital, which later had dozens of cases of typhoid. Mary Mallon was again involuntarily admitted to a number of New York area hospitals and institutions ‘without any prospect of again being released.’ In Ms. Mallon’s case, public health officials concluded that only isolation for the remainder of her life would effectively control the risk of typhoid transmission’’ (Rothstein et al., 2003, p. 20).

Laws governing the public health system, including its interaction with physicians, are being updated in the wake of the September 11 attacks. Though not uncontroversial, these laws generally aim to ensure that the public health system, when facing a clear emergency, can compel screening, vaccination, quarantine, and treatment (Annas, 2002; Gostin, 2002). To achieve these ends when deemed necessary, public health officials are being given power to force the hand of physicians with respect to patient care, against penalty of criminal charges (Annas, 2002). Physicians, therefore, should have a clear understanding of these laws and procedures, including, for example, which local and federal officials have the power to declare and enforce quarantine, and how to go about contacting and interacting effectively with them during an emergency. Physicians’ obligations regarding the containment of infectious disease, however, are not limited to adherence to the law; indeed, the ethical obligations of medical professionals to patients and to the public as a whole are their primary responsibilities, which should be met, insofar as possible, while striving to meet the secondary demands of the law (CEJA, 2002b). Quarantine and Isolation Two restrictive health measures are used to prevent and contain epidemics: Isolation to confine individuals with a confirmed or suspected case of a contagious disease and quarantine to isolate and restrict the movement of anyone who may have been exposed to an infectious agent but is not yet ill. Although both measures fall under the province of public health officials, physicians, too, may sometimes be called upon to forcibly isolate patients for a short time. Once public health officials have identified an outbreak, they can declare a public health emergency within a matter of hours and can call on a broad set of legal powers to enforce isolation and quarantine. Yet, index cases are likely to appear first in doctors’ offices and emergency rooms. In the short window after a potential case has been identified but before public health officials enact quarantine or other restrictive measures, physicians must be prepared and willing to forcibly isolate infected patients. Although most contagious patients will voluntarily comply with isolation, some will not. Recent bioterror training scenarios have worked under this

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assumption (Inglesby, Grossman, & O’Toole, 2001; Johns Hopkins Center for Civilian Biodefense, 2001), which was borne out in SARS outbreaks (Man Fined NT$60,000 for Violating Quarantine Rules , 2003; Quarantines Not Taken Seriously, 2003; Powell, 2003). Isolated patients might prefer to be home, rather than in a hospital for any number of reasons, and the addling effects of illness and fear make the situation worse. Patients might consider isolation even more unpleasant than a regular hospital stay; one recent study found that patients in isolation received fewer nurse visits and reported lower satisfaction and more problems with their care (Stelfox, Bates, & Redelmeier, 2003). These concerns are valid, and isolation at home is often a reasonable option, but sometimes it is not. In the event of an initial suspected case of smallpox, for example, most would prefer such a patient be cared for in a hospital isolation facility. If a patient with suspected smallpox insists on leaving the emergency department, under what authority might physicians forcibly hold and isolate such a person in advance of a formal public health order to do so? We might start by noting that it is acceptable for psychiatrists to place a patient who poses a suicide or homicide risk in a ‘‘hold’’ for some length of time, pending judicial review (Lavoie, 1992). Indeed, all physicians have a professional obligation to protect the public health, and may hold any patient to prevent harm to oneself or others (Gostin, Burns, & Lazzarini, 1999). Taking the case of such psychiatric patients as paradigmatic, we suggest that, a fortiori, physicians may detain infected patients to check an emerging outbreak. Yet with this power comes responsibility, which requires physicians to balance the sometimes competing interests of the individual and the community. Balancing Patient Autonomy with Public Health Holding patients involuntarily poses a fundamental ethical challenge for physicians and requires a fine balancing of patient autonomy against public health concerns. In the tradition of Hippocrates, physicians devote themselves to the needs of their individual patients, and understandably so. There are significant risks in physicians acting as agents of the state (Bayer & Fairchild-Carrino, 1993; Geiderman, 2002; International Dual Loyalty Working Group, 2002); yet a concern for the greater social welfare is as integral and longstanding as the Oath. Plato acknowledged physicians’ multiple allegiances when he wrote that physicians were ‘‘statesmen’’ who must do ‘‘what is best for the patients and for the state’’ (Jonsen, 2000). That same commitment accounts for the privileged professional standing

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medicine first achieved during the 19th century, as Cruess and Cruess (1997, p. 943) write: [L]egal measures for the first time granted medicine a broad monopoly over health care – along with both individual and collective autonomy – with the clear understanding that in return medicine would concern itself with the health problems of the society it served and would place the welfare of society above its own.

The AMA’s first-ever Code of Medical Ethics, published in 1847, reflected as much. In line with its view that a physician’s skills ‘‘are qualities which he holds in trust for the general good,’’ one chapter, titled ‘‘Of the Duties of the Profession to the Public, and of the Obligations of the Public to the Profession,’’ dealt with physicians’ social responsibilities during epidemics, including establishing quarantine (Bell & Hayes, 1999). As a result of this long history of physicians balancing the needs of their patients and the community at large, concerns over ‘‘outside’’ pressures – such as cost-containment and governmental regulatory measures – on the patient–physician relationship have waxed and waned throughout the history of the medical profession. By the 1960s, however, for a variety of reasons the scales had tipped decisively in favor of the needs and wants of individual patients (Huber & Wynia, 2004; Applebaum, 1999; Sage, 1999). Eventually, obligations to community and to public health had diminished so much that physicians were urged to ignore social considerations altogether. In 1984, for example, Norman Levinsky (1984, p. 1573), MD, wrote, ‘‘physicians are required to do everything that they believe may benefit each patient, without regard to costs or other societal considerations.’’ These events paralleled a rise in the importance of autonomy as an ethical principle and an increasing social mistrust of the state and other authoritarian structures. Medical ethics became associated with strict advocacy for individuals, not unlike legal ethics (but without an opposing counsel or an impartial judge). And, perhaps most importantly, the common understanding of ‘‘medical professionalism’’ mutated: while it once entailed the right of the profession, as a group, to set practice standards, it was construed as granting individual physicians the right to choose what therapies to offer each patient. In effect, the result of this strong emphasis on autonomy was that ‘‘professionalism’’ came to be understood, wrongly, as a license to practice without meaningful oversight. This late-20th century sense of professionalism, derived from individual autonomy, reflected in strict individual advocacy, and steeped in individual physician freedom, represents a clear break from the nuanced and longstanding role of physicians as a balancing force in society. True, it is simple

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and appeals to patients’ immediate interests. But it also reflects the potential demise of the profession’s cardinal obligation to mediate private and public health needs (Bloche, 1999; Wynia, Latham, Kao, Berg, & Emanuel, 1999). Indeed, it could hardly be more different from the initial understanding of professionalism as requiring careful collegial cross-checking, which is how physicians initially won the right to professional self regulation. The Physician as Social Trustee So far we have depicted two separate domains of physician responsibility; this is deceptive. Construing the ‘‘common’’ or ‘‘social’’ good as an entity apart from the interests of individuals leads us to think in terms of a zerosum game (London, 2003). In reality, the two sets of interests are interrelated and interdependent. A nuanced conception of the medical professional as a ‘‘social trustee’’ takes this into account. With the loss of the sense that professionalism entailed civic obligations, and the dominance of what might be called ‘‘lawyerly professionalism’’ in medicine, technical expertise became physicians’ only basis for a claim to the social authority that, for example, allows doctors to validate the use of sick days, help patients obtain illness exemptions from ticket refund policies, provide access to controlled substances, and generally regulate professional standards internally without the interference of state and market forces (Sullivan, 1999; Schlesinger, 2002). Unfortunately, while technical expertise proves that physicians have the knowledge necessary to administer these social goods, it alone cannot ensure that they will do so responsibly. Put simply, physicians who narrowly consider only individual patient interests might, for example, authorize more ticket refunds and sick days than airlines and employers, and indeed more than society, could tolerate. More than just the responsible allocation of ticket refunds and sick days is at stake – at stake is general social trust in the medical profession. This trust derives in part from acknowledgment of physicians’ technical expertise but is a broader and more precious good because it is the primary precondition of the medical profession’s socially derived authority. Unless the medical profession is occasionally willing to put public interests before individual patient (and physician) interests, the social trust will falter. Dr. William Sullivan writes, ‘‘Historically, the legitimacy, authority, and legal privileges of the most prestigious professions have depended heavily on their claims (and finally their demonstration) of civic performance, especially social leadership in the public interest’’ (Sullivan, 1999, p. 11). In recognition of this, leaders in medicine are calling today for a revival of civic, or

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‘‘social-trustee,’’ professionalism to preserve the public’s trust and the professional authority it engenders (Swick, 2000; Latham, 2002). Social-trustee professionalism regards physicians as the protectors of a core social good: health. As such, they must be trained to mediate the needs of society, the marketplace, and individual patients – with patients’ health remaining at the core. It is an enlightened and complex understanding of professionalism that acknowledges a dynamic relationship between the health of a community and its citizens; over the long run, the health of individuals is best served when physicians care, too, for the health needs of the community as a whole, i.e., public health. Here, the concept of professional authority comes full circle. Only if physicians take seriously their social obligations will society grant the medical profession the authority that allows it to provide effective individual care. In particular, it is the profession’s promise to promote the public good that justifies its relative protection from the market and independence from the state. And, perhaps ironically, it is just this professional independence from the state and the market that then allows patients to trust physicians in ways they do not trust either the government or salesmen. If physicians were to care only for their individual patients, without regard for social consequences, the equilibrium between the profession, market, and state would be disturbed. At that point, to ensure accountability, medical care would need to be placed squarely in the marketplace and/or the state would have to seek greater regulation of the profession – either would entail revoking physicians’ privileged professional status. Some see exactly these consequences in action today. So the challenge for physicians is this: Social trust allows the state to confer professional independence on physicians, and this relative independence allows patients to trust physicians; but social trust derives from physicians’ meaningful and demonstrable sense of duty to the community, not just to their individual patients. There lies the delicate path of professionalism, under-girded on one side by promises of fidelity to the community and on the other by promises to put patient interests first. If the profession strays too far to either side, then physicians risk losing their position as social trustee. This balancing act requires great poise and has been hard to carry off over time. The threat of bioterrorism promises to make it even harder. What Should be Done? This discussion has provided a good deal of theory, but what does it all mean in the context of a potential epidemic? In the end, we recognize that there are clear risks in asking physicians to make decisions about forced isolation, since

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physicians are, rightly, expected to attend first to the needs of their individual patients. Hence, generally speaking, public health officers, not one’s physician, should make decisions about quarantine and isolation (Wynia et al., 1999). However, when faced with a potential outbreak, physicians’ professional duties may tilt in favor of the public, at which times they should be empowered and willing to place patients in short-term holds to prevent the immediate spread of disease. Some physicians and patients raised on the medical ethics of the last 50 years will bristle at the paternalism of this notion, but, put simply, we find that professionalism requires such attention to civic duty. In contemplating its role in forced isolation, the profession has an opportunity to re-examine its understanding of medical professionalism and to renew its commitment to civic duties. Bioterror training should reinforce physicians’ ethical obligation to isolate infectious patients, involuntarily if necessary. In jurisdictions where physicians are not clearly permitted to hold contagious patients, laws should be amended to allow this. Furthermore, there should be open debates about appropriate limits to this power and about practical considerations regarding quarantine and isolation, such as when and how they should be enforced and how to respectfully care for those subject to these restrictive measures. More specifically, since the power to hold patients can be abused (Brown & Tooke, 1992), checks should be in place, such as requiring two physicians to sign off on every order and rapid judicial review, and limiting holds to the shortest time necessary. Finally, physicians should work to ensure that patients in isolation suffer no detriment in quality of care as a result.

TREATMENT In February 2003, a 50-year-old American businessman fell ill in Hanoi with a fever, dry cough, and pneumonia. He was taken to Hanoi French Hospital, where the staff perplexed by the case, called WHO infectious disease specialist Dr. Carlos Urbani. In daily visits with the patient, Urbani documented the disease’s clinical progression and soon realized that he had encountered an unknown but potentially contagious pathogen. Urbani quickly implemented protective procedures, including use of high-filter masks and double gowning, but not soon enough to prevent nurses in the hospital from falling ill. It was only a few days before Dr. Urbani was to declare to a colleague, ‘‘I have a hospital full of crying nurses. People are running and screaming and totally scared. We don’t know what it is – but it’s not the flu’’ (McNeil, 2003). When the hospital was quarantined on March 11, most staff remained inside. Many became ill, while others were forced to watch their infected colleagues sicken and die. Urbani, too, fell ill and died from the disease he was the first to describe – one of more than 800 persons worldwide to die of SARS, many of them health care professionals (Mydans, 2003).

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The case of Dr. Urbani, particularly his dedication and resultant death, raises a very important question, the answer to which is presently – and most unfortunately – unknown: how many health care professionals will fail to show up to combat an epidemic because they fear contracting the disease (Alexander & Wynia, 2003)? That is, how many of them will ignore, or are unaware of, the medical profession’s long-standing duty to treat even when doing so presents risk to the health care professional? Risks to Health Care Workers Dedicated to the study of disease, physicians are acutely aware of the risks inherent in a duty to treat. There are 56 documented cases of US health care workers becoming infected with HIV from needle sticks (US Public Health Service, 2001), and countless more have contracted Hepatitis B or C, tuberculosis (TB), and other potentially deadly infections. In fact, infection with TB during medical training was nearly ubiquitous into the 1950s, especially for pulmonologists (Sepkowitz, 1994; Snider, 1997). Moreover, events in the past decade have underscored the extraordinary risks health professionals may face in responding to terrorist attacks and new epidemics. For example, at least 10 ambulances were crushed in the World Trade Center attacks in 2001 (Finkelstein, 2001), and more than one-third of treating health care personnel became ill from cross-contamination in the 1995 sarin attack in Tokyo. Of course, natural outbreaks are sometimes as dangerous and are more common. In the recent SARS outbreak, health care workers were common second-wave victims (Bradsher, 2003), as they often are when responding to Ebola outbreaks in Africa. The psychological toll, too, of proximity to epidemics should not be forgotten. In the wake of the SARS epidemic, there were many reports of psychological problems – including an ‘‘exaggerated and disabling fear of infectious disease’’ – among health care workers (Rothstein et al., 2003, p. 10). From the Black Plague to HIV, health professionals have sometimes chosen not to face the risks of treating patients in epidemics, and this will almost certainly be true of some as new epidemics arise (Amundsen, 1977; Zuger & Miles, 1987; Zuger, 2003). During the recent SARS outbreak, for instance, the vast majority of health professionals continued to care for patients, some quite heroically, and yet at least one hospital in China had substantial difficulty providing services due to fear-induced absenteeism (Altman, 2003). According to a recent report, every hospital that was directly affected had some degree of difficulty maintaining needed staffing levels and in the wake of the outbreak in Toronto there have been a notable

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number of departures from the health professions and declining enrollment in medical training programs (Rothstein et al., 2003). As discouraging is the fact that some hospitals in New York have already announced that they intend to turn away any future victims of bioterror attacks (Herrick, 2003). Still, there are some encouraging signs of physicians’ willingness to cooperate in response to emergencies. Large numbers of medical personnel volunteered to help victims of the September 11 attacks (Annas, 2002), and the profession willingly treated patients infected with anthrax in 2001. But in both cases the risk physicians faced was limited, since there was no immediate danger in the aftermath of the September 11 attacks and anthrax is not transmissible person to person. It is therefore difficult to predict how willing American health professionals would be to treat patients in the face of more significant risks. A recent nationwide survey of physicians, however, offers some insight: physicians reported high willingness to respond in an outbreak of an unknown pathogen, though their willingness markedly declined once the pathogen was specified, allowing full appreciation of the degree of risk involved. Specifically, 80% of respondents expressed willingness to care for patients in an outbreak of an ‘‘unknown but potentially deadly illness,’’ but when asked if they would care for patients in a smallpox outbreak even if unvaccinated, only 33% were willing (Alexander & Wynia, 2003). Of interest is that only 55% reported that there exists a profession-wide duty to treat patients despite risk to one’s health. However, those physicians who believed in such a duty were about four-fold more likely to report willingness to care for patients during an outbreak. This suggests, but does not prove, that professional understanding of the duty to treat is an important factor in ensuring that physicians will be available to care for patients during epidemics. Physicians’ Professional Duty to Treat ‘‘Every man that undertakes to be of a profession or takes upon himself an office must take all parts of it, the good and the evil, the pleasure and the pain, the profit and the inconveniences all together and not pick and chuse; for Ministers must preach, Captains must fight and Physicians attend upon the sick.’’ William Boghurst, Apothecary; during the Great Plague of London, 1666 (Jonsen, 2000).

Several ethical and practical bases for a duty to treat have been proposed, including appeals to virtue, patients’ rights, social utility, and the principle of beneficence (White, 1999; CEJA, 2002b; Huber & Wynia, 2004). It has also been argued that such an obligation arises from the fact that the special

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training medical professionals receive not only increases the value of the aid, but also reduces the risk associated with providing it. We believe the most compelling reason for a duty to treat stems from medicine’s social contract and its trustee relationship with the public, as described above. The basis of the social contract is the recognition that health care is an essential social good, and that society must take special measures to ensure that it is reliably supplied, in high quality, whenever it is needed (Kurlander, Morin, & Wynia, 2004). Whereas society resorts to market mechanisms and government regulations in other industries to regulate supply, quality, and so on, the nature of medical needs demands something more. Hence, the public has formed a tacit agreement with the medical profession: It will grant the profession special privileges, including economic security, the right to selfregulation, and status, in return for which it must serve in its capacity as the social-trustee of health care. This requires that the profession provide care not only in times of good health, but more importantly, in times of ill health. The AMA’s 1847 Code of Medical Ethics formally enshrined, for the first time, the notion of professional obligations, as distinct from either religious duties or individual physicians’ habits of character, and unambiguously articulated a ‘‘duty to treat’’ in epidemics among those obligations: ‘‘When pestilence prevails, it is [physicians’] duty to face the danger, and to continue their labors for the alleviation of suffering, even at the jeopardy of their own lives’’ (Bell & Hayes, 1999). This statement on the duty to treat remained in the Code of Ethics for 130 years and withstood three major revisions, and so became integral to the public’s perception and expectation of the profession. Indeed, although no current data are available, as late as 1991, 72% of Americans still believed in physicians’ obligation to treat all sick people (Roper Associates, 2001). Why, then, is this particular obligation in need of reaffirmation among medical professionals? Rather than being due to any diminution in public expectation, we contend it is because of the profession’s competing interest in bolstering its autonomy and the relative rarity, until very recently, of the need to act or reflect on the duty. The history of the statement on duty to treat in medical codes of ethics is illustrative. In 1912, the phrase, ‘‘A physician is free to choose whom he will serve,’’ was added to the AMA’s Code in response to concerns over state pressures and the ‘‘corporate practice of medicine.’’ This statement stood as the first formal counterpoint to the professional duty to treat and remains virtually unchanged today, though with the caveat that the freedom to choose does not apply in emergencies. Unfortunately, this broad ‘‘emergency exception’’ provides little practical guidance. Meanwhile, in 1957 the Code underwent a massive revision, in which the specific articulation of a

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duty to treat was removed from the main text and relegated to an interpretive note on one of 10 new guiding Principles of Medical Ethics, which to this day constitute the Code’s core. Unfortunately, its place even as a note was short lived. In 1970, the US Surgeon General declared it time to ‘‘close the book’’ on infectious diseases (World Health Organization, 2003), and seven years later, as the profession was preparing to celebrate the global eradication of smallpox, the duty to treat in epidemics was one of several statements removed from the Code as historical anachronisms (Huber & Wynia, 2004). The prematurity of the Surgeon General’s declaration was brought into sharp relief with the onset of the AIDS epidemic. In part because two full generations of physicians had entered the medical profession without facing a similar threat, mixed opinions were voiced from within the profession about their duty to treat AIDS patients. Early wavering, however, gave way to a consensus that a duty to treat still existed, though subsequent statements to that effect focused almost exclusively on HIV/AIDS rather than epidemics in general, and often were framed in terms of anti-discrimination obligations rather than broader professional obligations related to infectious or other risks. The potential for extrapolation of such focused statements to imply an outright duty to treat in the face of risk was further minimized by findings that the risk of HIV transmission through routine medical contact is very low. Some medical societies, however, took the opportunity to reaffirm a more general duty to treat. The World Medical Association’s Interim Statement on AIDS, for example, stated: ‘‘Physicians have a long and honored tradition of tending to patients afflicted with infectious diseases with compassion and courage. That tradition must be continued throughout the AIDS epidemic’’ (World Medical Association, 1987). Also, the Infectious Diseases Society of American and the American College of Physicians stated that health care professionals ‘‘must provide high-quality nonjudgmental care to their patients, even at the risk of contracting a patient’s disease’’ (Health & Public Policy Committee, 1986). What Should be Done? The medical profession and society at large can each take action to help reaffirm and make good on physicians’ duty to treat. First, professional associations should make clear their current stances on physicians’ obligations to care for patients during epidemics. The AMA and many state and specialty medical societies (including both the American College of

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Surgeons and ACP-ASIM) have taken the lead by endorsing a new Declaration of Professional Responsibility, which broadly states: ‘‘We, the members of the world community of physicians, solemnly commit ourselves to y treat the sick and injured with competence and compassion and without prejudice y [and] apply our knowledge and skills when needed, though doing so may put us at risk’’ (CEJA, 2002a). Such articulations should be further formalized within the codes of ethics of each medical professional society. In doing so, each should look to recapture the inspiring spirit and unambiguous language of the early AMA Code. These steps will help avoid the untoward ambivalence witnessed at the start of the HIV epidemic, which may already be reemerging with new threats (Altman, 2003; Herrick, 2003), and assuage public fears about physician abandonment in the event of epidemic or bioterror attack. Discussions about the duty to treat should be incorporated into medical ethics and professionalism courses. These courses, along with society and medicine courses, literature and medicine courses, and various patient–doctor relationship courses, can serve an important socializing function, making clear to students that entry into the medical profession entails clear social obligations. While deciding on one’s professional ethics is necessarily individual, it is not entirely personal – after all, patients must assume that all physicians adhere to certain core ethical beliefs. With a reaffirmation of a duty to treat, stressing medicine’s shared moral imperative to care for people who are suffering, those interested in becoming physicians would be forced to consider carefully their relationship to the profession, its ethical underpinnings, and the social contract inherent in its codes of ethics. Forethought in this regard will aid in the development of a professional identity and reduce the tendency to appeal to personal morality (or self-interest) to intuit one’s way through difficult professional situations. In the long term, the profession as a whole should recognize that there may be a penalty if it fails to collectively honor this duty. Put simply, contemporary society expects a unified professional identity and rewards physicians accordingly; in the absence of professionalism, that contract may be void. For society’s part, to justify and strengthen this obligation, special efforts should be taken to ensure that health care professionals receive all reasonable preventive and treatment measures in the event of an outbreak, such as vaccines, prophylactic therapies, psychological support, and safety training (Emergency Personnel Protection Act, 2003). Such preferential treatment makes practical sense, since only healthy practitioners will be of value in responding to any ongoing threat (Thinking about Smallpox (Editorial), 2002). This value was implicitly recognized in policy discussions over early

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smallpox vaccination for health care workers. Indeed, when health care professionals tend to patients in epidemics, healthy people place themselves (and often their families) at risk for the common good. The state must recognize that this burden, in some manner, should be shared by the community as a whole. Health care workers should, therefore, be assured that in the event of an attack, all that is possible will be done to protect their families as well. In the worst case, the families of health care workers who perish in epidemics should receive fair and predictable compensation, just as do the families of police and firefighters, thus distributing the burden of pursuing the public interest. Reciprocally, physicians should avail themselves of access to needed vaccinations, training, and other resources to allow them to fulfill their duty to treat infected patients with the least possible risk to themselves and their families. On final analysis, realization of the professional duty to treat consists of millions of individual choices, despite the social contract. Physicians have personal obligations, to family and self that will inevitably weigh against the duty to treat. In our view, however, these other commitments should be secondary to the professional obligation. Like other public service professions, including firefighters and police forces, some risk is simply part of the job description for medical professionals. Granted, a duty to treat must have some limitations in the degree of risk that ought to be assumed – that is, though it may be difficult to delineate, there is a point at which duty gives way to heroism, and heroism to martyrdom. Nonetheless, a minimal standard that calls for treating patients in the face of a moderate, unavoidable risk, seems reasonable as a starting position. Certainly, physicians who refuse to treat patients in poorly defined but probably relatively low-risk situations should be called to task on grounds of breaching professional ethics. At the other end of the spectrum, physicians need guidance on how to handle predictably high-risk situations. In this regard, many questions remain: should certain physicians be designated to take on additional risk? What might the incentives and rewards be? What level of expertise is called for in caring for certain illnesses? These and related issues call for continued open dialogue within and between the profession and society.

CONCLUSION Ultimately, our first line of national defense against epidemics, whether natural or initiated through bioterrorism, is the health care system. To

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effectively counter the spread of infectious disease, the system must ensure universal rapid access to knowledgeable and compassionate health care professionals who, in turn, can and will evaluate and care for potentially contagious patients. Where ethical barriers in the health care system stand in the way of detection, containment, and treatment, they must be confronted and resolved, because undiagnosed, unconfined, and untreated infections pose too great a risk to individuals and the community.

ACKNOWLEDGMENTS The authors would like to thank Lawrence Gostin, J.D., and Sam Huber, M.D., for their work on two prior papers that helped to shape and inform this essay.

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Janison, D., & Hetter, K. (2002). ‘‘Dirty Bomb’’ fears. Newsday, A5. Janofsky, M. (2003). Burden grows for southwest hospitals; Giving more illegal immigrants care they need but can’t pay for. New York Times, A14. Johns Hopkins Center for Civilian Biodefense, Center for Strategic and International Studies, ANSER, Memorial Institute for the Prevention of Terrorism. (2001). Final script: Dark winter: Bioterrorism exercise. Andrews Air Force Base, June 22–23, 2001. Baltimore: Johns Hopkins Center for Civilian Biodefense. Available: http://www.upmc-biosecurity.org/ pages/events/dark_winter/DARK%20WINTER.pdf Jonsen, A. R. (2000). A short history of medical ethics. New York: Oxford University Press. Kurlander, J. E., Morin, K., & Wynia, M. K. (2004). The social contract model of professionalism; Baby or bath water? American Journal of Bioethics, 4, 33–36. Latham, S. R. (2002). Medical professionalism: A parsonian view. Mt. Sinai Journal of Medicine, 96, 363–369. Lavoie, F. W. (1992). Consent, involuntary treatment, and the use of force in an urban emergency department. Annals of Emergency Medicine, 21, 25–32. Levinsky, N. (1984). The doctor’s master. New England Journal of Medicine, 311, 1573–1575. London, A. J. (2003). Threats to the common good: Biochemical weapons and human subjects research. Hastings Center Report, 33, 17–25. Man Fined NT$60,000 for Violating Quarantine Rules. (2003). China post internet edition, front page. Available from back issue retrieval at http://www.chinapost.com.tw McNeil, D. G., Jr. (2003). Disease’s pioneer is mourned as a victim. New York Times, Fl. Mydans, S. (2003). The SARS epidemic; containment; How Vietnam halted SARS and saved the life of a nurse. New York Times, Al. NEJM Editors. (2001). September 11, 2001. New England Journal of Medicine, 345, 1126. Nesmith, J. (2003). Economists tally global cost of SARS at up to $140 billion. Victoria Times Colonist, Al2. Novello, A. C. (2002). 2002 National Health Policy Conference–Critical Health Issues for States (Washington, DC), Conference Transcript, p.16. Retrieved April 15, 2004, from http:// www.kaisernetwork.org/health_cast/uploaded_files/Critcalissues.pdf Perez-Pena, R., & Altman, L. K. (2004). Rare instance of avian flu is a mystery. The New York Times, B1. Powell, B. (2003). The fallout of SARS in the city. Toronto Star, F2. President’s Commission for the Study of Ethical Problems in Medicine and Biomedicine and Behavioral Science Research. (1983). Securing access to health care: The ethical implication of differences in the availability of health services (Vol. 1) Washington, DC: President’s Commission. Prothero, R. M. (1977). Disease and mobility: A neglected factor in epidemiology. International Journal of Epidemiology, 6, 259–267. Quarantines Not Taken Seriously. (2003). The China post internet edition, front page. Available from back issue retrieval at http://www.chinapost.com.tw Ramsay, M. (1996). Professional and popular medicine in France. 1770–1830. New York: Cambridge University Press. Rojas, A. (2001). Comeback of syphilis stuns officials: The outbreak is linked to high-risk sexual behavior of gay and bisexual men. Sacramento Bee, Al Roper Associates. (2001). Great American TV Poll #4. Princeton, NJ: Princeton Survey Research Associates.

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Rothstein, M. A., Alclede, M. G., Elster, N. R., Majumder, M. A., Palmer, L. I., Stone, T. H., & Hoffman, R. E. (2003, November). Quarantine and isolation: Lessons learned from SARS: A report to the Centers for Disease Control and Prevention. Louisville, KY: Institute for Bioethics, Health Policy, and Law, University of Louisville School of Medicine. p. 20. Available: http://www.louisville.edu/medschool/ibhpl/publications/ SARS%20REPORT.pdf Russakoff, D. (2001). Out of tragedy, N.Y. finds way to treat medicaid need. The Washington Post, A2. Sage, W. M. (1999). Physicians as advocates. Houston Law Review, 35, 1529–1630. Sande, M. A., & Ronald, A. R. (2004). Update in infectious diseases. Annals of Internal Medicine, 140(4), 290–295. Schlesinger, M. (2002). A loss of faith: The sources of reduced political legitimacy for the American medical profession. Milbank Quarterly, 80, 185–235. Schlosberg, C., & Wiley, D. (1998). The impact of INS public charge determinations on immigrant access to health care. Retrieved March 2, 2003, from http://www.healthlaw.org/ pubs/19980522publiccharge.html Schroeder, S. A. (1999). The American paradox: Lack of health insurance in a land of plenty. In: Americans without health insurance: Myths and realities. Robert Wood Johnson Foundation 1999 annual report. Princeton, NJ: Robert Wood Johnson Foundation. Sepkowitz, K. A. (1994). Tuberculosis and the health care worker: A historical perspective. Annals of Internal Medicine, 120, 1–9. Shaffer, D., Armstrong, G., Higgins, K., Honig, P., Coyne, P., Boxwell, D., Beitz, J., Leissa, B., & Murphy, D. (1993). Increased US prescription trends associated with the CDC Bacillus anthracis antimicrobial postexposure prophylaxis campaign. Pharmacoepidemiology & Drug Safety, 12, 177–182. Siu, A. L., Sonnenberg, F. A., Manning, W. G., Goldberg, G. A., Bloomfield, E. S., Newhouse, J. P., & Brook, R. H. (1986). Inappropriate use of hospitals in a randomized trial of health insurance plans. New England Journal of Medicine, 315, 1259–1266. Slesinger, D. P. (1992). Health status and needs of migrant farm workers in the United States: A literature review. Journal of Rural Health, 8, 227–234. Smedley, B. D., Stith, A. Y., & Nelson, A. R. (Eds) (2003). Unequal treatment: Confronting racial and ethnic disparities in health care. Committee on understanding and eliminating racial and ethnic disparities in health care, Board on Health Sciences Policy, Institute of Medicine. Washington, DC: National Academies Press. Snider, G. (1997). Tuberculosis then and now: A personal perspective on the last 50 years. Annals of Internal Medicine, 126, 237–243. Stelfox, H. T., Bates, D. W., & Redelmeier, D. A. (2003). Safety of patients isolated for infection control. Journal of the American Medical Association, 290, 1899–1905. Sullivan, W. M. (1999). What is left of professionalism after managed care? Hastings Center Report, 29, 7–13. Swick, H. M. (2000). Toward a normative definition of medical professionalism. Academic Medicine, 75, 612–616. Thinking about Smallpox (Editorial). (2002). Washington Post, A34. Trotter, C. G. (2003). Emergency medicine, terrorism and universal access to healthcare: A potent mixture for erstwhile knights-errant. In: J. Moreno (Ed.), In the wake of terror: Medicine and morality in a time of crisis (pp. 133–146). Cambridge, MA: MIT Press.

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US Public Health Service. (2001). Updated U.S. public health service guidelines for the management of occupational exposures to HBV, HCV, and HIV and recommendations for postexposure prophylaxis. Morbidity and Mortality Weekly Recommendations and Reports, 50, 1–52. White, C. C. (1999). Health care professionals and treatment of HIV-positive patients: Is there an affirmative duty to treat under common law, the Rehabilitation Act, or the Americans with Disabilities Act? The Journal of Legal Medicine, 20, 67–113. Wilson, M. E. (1995). Infectious diseases: An ecological perspective. British Medical Journal, 311, 1681–1684. World Health Organization. (2003) WHO report on global surveillance of epidemic-prone infectious diseases. Retrieved April 15, 2004, from http://www.who.int/csr/resources/ publications/introduction/en/print.html World Health Organization. (2004, February 25). Confirmed human cases of avian influenza A(H5N1). Retrieved March 12, 2004, from http://www.who.int/csr/disease/avian influenza/country/cases table 2004 02 25/en/ World Medical Association. (1987, October). Statement on AIDS. Retrieved March 15, 2004, from http://www.wma.net/e/policy/a16.htm World Medical Association. (2002). The WMA declaration of Washington on biologica1 weapons (Document 17.400). Retrieved September 18, 2003, from http://www.wma.net/e/policy/ b1.htm World Medical Leaders. (2004). Biological terrorism resources. Accessed February 27, 2004, from http://www.wml.com/video lib/special/bio/bioterror.jsp?uid=main Wynia, M. K., & Gostin, L. O. (2002). The bioterrorist threat and access to health care. Science, 296, 1613. Wynia, M. K., & Gostin, L. O. (2004). Ethical challenges in preparing for bioterrorism: The role of the health care system. American Journal of Public Health, 94(7), 1096–1102. Wynia, M. K., Latham, S. R., Kao, A. C., Berg, J. W., & Emanuel, L. L. (1999). Medical professionalism in society. New England Journal of Medicine, 341, 1612–1616. Yacknin, E. (2001). New York State provides New York City residents with short-term disaster medical coverage relief. Greater Upstate Law Project. Retrieved April 15, 2004, from http://www.gulpny.org/Public%20Benefits/Cash%20Assistance/CA/sept11/Disaster Medicaid.PDF Yu, I. T. S., Li, Y., Wong, T. W., Tam, W., Chan, A. T., Lee, J. H. W., Leung, D. Y. C., & Ho, T. (2004). Evidence of airborne transmission of the severe acute respiratory syndrome virus. New England Journal of Medicine, 350, 1731–1739. Ziv, T. A., & Lo, B. (1995). Denial of care to illegal immigrants. Proposition 187 in California. New England Journal of Medicine,, 332, 1095–1098. Zuger, A. (2003). In times of turmoil, clarion call for doctors often goes unanswered. New York Times, F5. Zuger, A., & Miles, S. H. (1987). Physicians, AIDS, and occupational risk: Historic traditions and ethical obligations. Journal of the American Medical Association, 258, 1924–1928.

CHAPTER 7 DOCTORS, DUTIES, AND DANGERS: THE REASONABLE PHYSICIAN AND CONTAGIOUS POPULATIONS Chalmers C. Clark 1. INTRODUCTION In an essay titled, ‘‘In Harm’s Way. AMA Physicians and the Duty to Treat’’ (Clark, 2005), I argued that a physician’s duty to treat, at personal risk, followed not only from the language, history, and precedents of the American Medical Association’s Code of Ethics, but that such a duty was sound in morally relevant ways. A key element in the soundness of the argument was that such a duty had contractual features that were inherent in an implicit social covenant. In this covenant, so the argument goes, the profession has accepted a relationship that is neither market based nor political. The relationship might best be called one of public trust. In this relationship, the profession dedicates itself to the medical well-being of persons before considerations of profits or politics. In return, by maintaining this trust, members of the profession accrue some generous benefits. The covenant provides that in return for this service in trust, the profession is remunerated by a provision of professional autonomy and the attendant goods that such standing yields; Principal among those goods are control over one’s work, high social stature, and a sizable income. Ethics and Epidemics Advances in Bioethics, Volume 9, 163–174 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09007-8

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The point thus was that the duty to treat, at personal risk, was not only implied by a voluntary decision to join the profession (designed in large measure to combat disease), but that such a duty was supported by a covenant that provided just and generous compensation for the service. Compensation and consent are linked thus as crucial justifications for the profession to shoulder a duty to treat at personal risk. In light of this argument, worries were raised about the consent side of the argument and how it applies to actual physicians in a variety of circumstances.1 Most notable is the case of physicians who entered the medical profession after 1957. In 1957 there began a period when for the first time, since the founding of the American Medical Association (1847), the articulation of a duty to treat at personal risk was removed from the AMA Code. This, of course, raises concerns about consent and sufficient notice, especially as it applies to physicians entering the profession during this era. The problem is exacerbated when we recognize that the AMA leadership not only acquiesced in the removal of the language defining the duty but, as it turns out, during the AIDS epidemic (of the 1980s and 1990s in the US) the AMA leadership issued a statement tantamount to framing the question of personal risk as something that was ethically optional rather than obligatory. Specifically, the AMA issued a statement saying that treating HIVpositive patients was something that could be part of professional practice if the physician was ‘‘emotionally able to do so’’ (Huber & Wynia, 2004). The public and the medical community rebelled at the AMA’s statement and six months later it was overridden and recast as follows: ‘‘A physician may not ethically refuse to treat a patient whose condition is within the physician’s current realm of competence solely because the patient is seropositive’’ (Huber & Wynia, 2004, pp. W7–W8). In what follows I will offer an argument to answer the question of how individual physicians might understand the duty to treat when clear guidance from professional leadership is confused or lacking. I conclude that physicians continue to have such a duty, even under circumstances of confused leadership and lapsed guidance in the literature of the profession. The emphasis of the argument will be that such a duty can be recognized from fundamental features inherent in the physician’s role and from considerations of general morality. It takes little reflection to recognize that many features of the physician’s role enjoy wide currency with the general public. I will contend that such general understanding amounts to a reservoir of public notice about the duties, expectations, and privileges that flow from adopting the physician’s role. While roles can and do evolve, and indeed, doctoring might well be

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transformed into something other than it is presently, I do not believe that the very real tensions in the physician’s role today, go so far as to suggest that there has been a shift in its core features. In broad outline, thus, the argument will be that even if neither clear nor explicit notice has been served by the professional leadership, there remains sufficient background information available to all citizens that would lead a ‘‘reasonable physician’’ to conclude that a duty to treat, even at personal risk, is a constitutive part of the physician’s role. The reasonable physician is not only aware of the social role he or she plays but also recognizes the sizable benefits accrued from its adoption. As such, a reasonable physician is well situated to appreciate that the social obligations that attach to the doctor’s role are justly derived.

2. BACKGROUND TO THE QUESTION The question of physicians facing personal risk was famously addressed by the American Medical Association with the publication of the first AMA Code of Ethics back in 1847. The concern that prompted considerations of personal risk was the presence of pestilence and the threat of impending epidemics. The expression of this duty was rendered in bold and unequivocal terms. ‘‘When pestilence prevails, it is [a physicians’] duty to face the danger, and continue their labors for the alleviation of suffering, even at the jeopardy of their own lives’’ (Huber & Wynia, 2004, p. W6). Of course, pestilence was not anything new to human history as of 1847. Surprising to many, however, is the fact that in the broad sweep of medical history, from Greece and Rome to modern times, no consistent professional tradition had emerged regarding physicians and personal risk. Indeed, many prominent physicians – including Galen in the early first century – fled for their lives when faced with contagious populations. Hence, the move made by the AMA, in the 1847 code, was at once dramatic and professionally defining. Indeed, in an essay by Zuger and Miles, it is noted that since 1847, the AMA’s bold move to embrace a policy of personal risk during public perils has had sustained effects. In the history of ethical codes for the medical profession, this statement is unprecedented. The AMA’s strong statement probably owes more to a determination to establish the honor and prestige of the profession than to physicians’ actual abilities y Still, the sense of duty formalized by the AMA was sustained, it becomes far more difficult to find recorded instances of physicians’ reluctance to accept the risks that epidemics entailed for them (Zuger & Miles, 1987, pp. 1924–1928).

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With such a clear and defining professional move in place, one has to wonder why the AMA allowed the language of personal risk to lapse. The problem of professional notice to individual members of the profession, regarding matters of personal risk emerges when we note that after 1957, the language of personal risk disappears from the AMA Code without argument or explanation. Huber and Wynia argue that since the language of accepting personal risk was largely crafted as a response to the threat of pestilence, it disappeared thus, because the threat no longer seemed to be a serious danger. What happened, they write, was that ‘‘by the 1950s, the era of massive epidemics was perceived to be ending in America’’ (Huber & Wynia, 2004). They further note that statements on epidemics were quietly withdrawn in 1977 as ‘‘irrelevant historical anachronisms’’ (Huber & Wynia, 2004). Largely due to the terrorist events surrounding September 11, 2001, the language of responding at personal risk returned to the AMA literature, in December 2001 when the House of Delegates of the AMA adopted a ‘‘Social Contract with Humanity’’ that contained a Declaration of Professional Responsibility (Code of Medical Ethics, AMA, 2002, pp. 144–145). The key portion of the Declaration reads as follows, ‘We, the members of the world community of physicians, solemnly commit ourselves to: y Apply our knowledge and skills when needed, though doing so may put us at risk’’ (Code of Medical Ethics, AMA, 2002, p. 145).

3. THE REASONABLE PERSON AND THE REASONABLE PHYSICIAN The question I will examine is how a physician should view the duty to treat at personal risk having entered the profession during a period when the duty was dropped from the language of the AMA Code. During a time, moreover, when the conception of that duty appears to have drifted far enough from its original 1847 moorings that the AMA leadership did not scruple to issue a statement that effectively rescinded the ethical force of this defining position altogether. In consideration of our question, I shall proceed by framing the discussion in terms of a standard of judgment that has found its way into American tort law, though it has origins as far back as Aristotle. I refer to the concept of ‘a reasonable person’. This concept can be recommended for present purposes by noting its ‘‘real world’’ and applied utility. The reasonable person standard is a thought

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experiment that is functionally grounded in virtue ethical analysis. In the legal context, Heidi Li Feldman writes, In a civil tort action, the fact finder – usually a jury – performs this sort of thought experiment to ascertain how a person possessed of two specific virtues, prudence and due carefulness, would behave in a specific situation. Through this experiment, the jury discovers whether negligence law permits or proscribes the conduct of the alleged tortfeasor (Feldman, 2000, p. 1433).

In using this standard, I will not pursue further legal considerations. My goal is to prompt greater ethical clarity on the question of whether a reasonable physician ought to realize that he or she has such a duty to treat even if the professional leadership has confounded the question. The value of using this standard is apparent from its wide use with juries in the legal setting. Here, citizens who are not legally trained are able to make judgments by virtue of such a thought experiment. It has the further value of being useful as a decisional guide amid a wide range of moral and religious commitments held by jury members. It appears that this standard allows a plurality of moral and religious convictions into the decisional process with a minimum of conflict. In shop, the method has proven its worth in practice. In using the reasonable person standard, I propose to apply the method not to reasonable persons generally, nor to legal judgments, but to moral judgments and especially regarding ‘‘the reasonable physician’’.

4. REALIZING OUR ROLES Roles in society are things that are generally recognized and understood without needing much in the way of explicit definition. Indeed, by inhabiting a role, our expectations alter with respect to the persons who adopt those roles. But what are roles? Let us consider some examples. There are roles of teacher, of priest, of police, of nurse, of attorney, of employer and employee, and most certainly, there is the role of doctor or physician. The meaning of the term ‘role’ has origins in theatrical language and it originally made reference to the parchment on which an actor’s part was written. It is pointed out, however, that the term ‘role’ can be blended rather closely with the term ‘relationship’. Instead of the more expansive usage of ‘relationship’, Arthur Applbaum rightly recommends that we should ‘‘y reserve the term role for positions with some degree of regularity and durability, and where there are collective expectations, however informal or contested, about the content of the position’s duties, values, and virtues’’

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(Applbaum, 1999, p. 47). Applbaum argues that ‘doctor’ is a social role, but to distance the concept of ‘role’ from mere ‘relationship’, Applbaum makes use of Bernard Williams’s example that ‘‘wife’s brother in our society’’ is not a sufficiently defined relationship to constitute a social role (Applbaum, 1999). The point is persuasive. If A is B’s ‘wife’s brother in our society’, our level of what it is reasonable to expect regarding A is preciously thin. However, if A is B’s wife’s ‘physician’ some basic expectations are clearly in place. Notable among those expectations are factors of education, income, social status, and trustworthiness in work. That being said, we need to recognize that roles can and do evolve over time. Further, it could come to pass that through pressures of the free market and business demands of HMOs, the role of doctoring might become transformed. Such transformation of a well-defined social role, like that of doctoring, is what Applbaum calls ‘schmoctoring’ (Applbaum, 1999). In schmoctoring, there is a reconfiguration of some well-established role, like doctoring, to suit demands that might replace the core elements of a given social role. For instance, consider a possible shift in the medical profession’s primary commitment to patient benefit. A contending priority might come about by way of market pressures and ever greater emphasis on cost benefit rather than patient benefit. If carried far enough a priority shift could occur where the role of the physician might tend to look more like the role of employee of a large health care corporation rather than physician as the autonomous professional we think of today. Such a move would shift traits of trustworthiness, for example, more toward employer and employee relations (i.e. physician as employee) rather than physician and patient trust relations. While it is true that transition is on the move in medical roles, but do not believe that present circumstances indicate a pivotal shift away from patient benefit as the true North of our medical profession. The role of doctor, as we understand it, is still coherently committed to the priority of the wellbeing of patients. What we are witnessing today is largely a market-driven challenge to the socially established role of doctor as autonomous professional. Other factors are certainly at work in current challenges to the doctor’s role. For one example, consider the paternalism and priestly sway the role of doctor has had for many years and how it now has become largely unacceptable in the US. People often succumb to the paternalism of the old style physician, but frequently they resent it afterwards. Unfortunately, we have yet to see the emergence of a coherent new model of the physician and patient relationship to replace the old paternalism. My best guess is that the

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new model will be a multidimensional role that combines expertise, patient education, attentiveness, and one that offers patients a more collegial approach if the patient wishes more participation in their own treatment and care. While cynicism about doctors remains all around us, it seems clear to me that the core element of patient care, as a central feature of the role, remains in place even though the battle over the soul of the doctors role has yet to be fully decided.

5. A DUTY TO ASSIST: REALIZING THE RISKS In 1991, Norman Daniels took up our question of a duty to treat at personal risk, in the context of HIV infection, and argued for such a duty based on an analysis of ‘consent’ (Daniels, 1991). In his analysis, Daniels considers the AMA’s 1847 claim that a physician is expected to treat ‘‘without regard to the risk to his own health.’’ Daniels believes this is an extreme and unrealistic view. He writes, ‘‘We must believe that there are some limits, however vaguely specified, to the risks physicians have agreed to face’’ (Daniels, 1991, p. 38). Daniels then constructs a basic argument for the duty to treat in terms of what he calls a middle ground or a ‘‘modified AMA position’’. Generally speaking, his argument runs as follows: Since physicians have consented to some (vaguely defined) standard of risk when they enter the profession, if the circumstances (HIV, bioterrorism, etc.) fall under that standard of risk, then there is a duty to treat even at personal risk if the risks fall within that standard. The point of this argument actually aims to settle one point with finality. Namely, is there such a duty or no? Once this is settled, in the affirmative, the question shifts from whether there is or there is not such a duty, to questions of how much and to what extent.2 If settled in the negative, the second question becomes moot. The argument by Daniels appears based on both the public and professional understanding of what it means to adopt the physician’s role. That public information and understanding of the physician’s role is readily available is evident in the long list of media-medical programs stretching back to Doctor Kildare, Marcus Welby, and Ben Casey. More recently shows such as MASH, General Hospital, ER, Chicago Hope, and Northern Exposure, have also focused their gaze on various dimensions of the role of doctoring. I take it, thus, that it is fairly uncontroversial to assert that there is a thick public understanding of information regarding the physician’s role. The dedication and sacrifice suffered by physicians for the sake of their patients is always a thematic undertone, whether the protagonist lives up to

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the standard or not. The theme of patient care being the first duty of a doctor is sometimes the direct subject of these stories, but even when it is not, it remains thematically present nonetheless much like the pedal tones of an organ Fugue. In his consent-based argument Daniels seems to rely on something like this kind of general understanding of the physician’s role. Consent to personal risk is nowhere to be found in the various oaths taken by physicians. As noted above, the duty to treat at personal risk first came into explicit medical literature in the 1847 AMA Code of Medical Ethics. Recognizing Daniels point then, we note that a primary goal of the medical art is to wage combat against disease. As such, it is common knowledge that treating persons suffering from various diseases puts the caregiver at greater risk in providing such a service than would be the case otherwise. Daniels draws back from endorsing the rather extreme language of the 1847 Code that indicates that physicians should accept risks up to and including the risk of their own lives. Certainly, the idea of physicians risking their life as a moral duty is aimed much too high to be realistic, and consequently, some discussion of what is meant by acceptable risk is needed.

6. CONCEPTUALIZING REASONABLE RISK Alexander and Wynia point out that a variety of arguments have been offered supporting a duty to treat under conditions of personal risk, but they claim that: each of these arguments has limitations and none can provide specific guidance as to the exact degree of risk to be undertaken. Yet as with other public service professions, including the fire and police forces, risk has traditionally been part of medical care y (Alexander & Wynia, 2003, p. 195).

In what follows a general standard for rendering aid at personal risk will be articulated. A key aspect of the analysis is that while persons generally have obligations to assist in ‘‘minimally decent’’ ways, in the face of a critical human need, the standard of aid is largely a function of our ability to assist and our ability to control personal risk factors. The point emerges thus that having special abilities to assist creates greater obligations to assist. This is particularly true in the case of physicians and those who lack such knowledge and training. Nonetheless, obligations to ‘oneself’ and to considerations of effectiveness in service can be seen to properly limit physician’s obligations to assist.

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Judith Jarvis Thomson has generated a general argument for the duty to assist from the parable of the Good Samaritan (Thomson, 1971). Thomson considers the issue by drawing our attention to the tragic case of Kitty Genovese and the events that took place on March 13, 1964, in Kew Gardens, Queens. On this day, thirty-eight people watched and did nothing to help as Kitty Genovese was stabbed repeatedly and finally killed. Of the 38 witnesses to her murder, not even one person made a phone call to police. Simon, Powers, and Gunnemann have also used this horrible incident as paradigmatic for defining a general ‘‘moral minimum’’ for assisting others in the case of a ‘‘critical human need’’ (Simon, Powers, & Gunnemann, 1997). The authors note that: ‘‘What so deeply disturbed the public’s moral sensibility was that in the face of a critical human need, people who were close to that need and had the power to do something failed to act’’ (Simon et al., 1997, p. 63). Thomson, however, proceeds to draw a three fold distinction on the notion of Samaritanship. According to Thomson, there are not only ‘‘good Samaritans,’’ but ‘‘splendid Samaritans’’ and ‘‘minimally decent’’ ones as well. Thomson points out that the witnesses to the murder of Kitty Genovese fell below what counts as even minimally decent and that is a standard none of us should fall below. We should note that what counts as minimally decent behavior varies with degree of ability to render aid. If I am trained in water safety and life saving, my obligation to assist a drowning victim is greater than that of the average bather on the beach. Note too that by virtue of my training, my own personal risk is reduced relative to the average bather. Consequently, given the expert knowledge and training of physicians, in the relevant cases, the minimal standard of rendering aid is higher for physicians than it is for the avenge citizen, even though both have obligations if the need is critical. So, let us take the point of possessing medical ability and consider the question of personal risk under the standard of a reasonable physician along with a bottom line moral standard of ‘‘minimal decency’’. We have already noted that the reasonable person standard requires the two virtues of prudence and due care. In light of this, it would appear that the reasonable physician should realize some minimal acceptance of medically indicated risk as required in the exercise of the virtue of due care in treating patients. The combination of factors indicates that members of the medical profession have special obligations to assist and to face some degree of risk beyond the average person in at least three ways. First, since the ability to render aid for physicians is greater, the obligation to assist is also elevated. Second, by consideration of Daniels’ consent argument, we must recognize that by

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freely joining a profession designed in part to combat disease, a reasonable physician thus consents to at least some minimal standard of risk. And third, a reasonable physician, through virtues of prudence and due care, might be expected to realize that the profession has flourished due to a socially negotiated agreement to be available to assist the public in times of public duress. The point about the social covenant is more fully developed elsewhere (see Clark, 2001, 2005), but perhaps a little more can be sketched about that question here. The crux of the issue has to do with social expectations regarding the role of doctoring. Much of this information, it has been argued, is contained in the reservoir of public opinion and is dramatically played out in various forms of literature and in the public media. But is portrayal simply a romantic illusion fostered by a monopolistic guild of wealthy professionals? My argument asserts that these social expectations are not illusory and indeed are based on an actual process of social negotiation. As Paul Starr has written, If the medical profession were merely a monopolistic guild, its position would be much less secure than it is. The basis of its high income and status y is its authority, which arises from lay deference and institutionalized forms of dependence. The private interests of physicians alone would be insufficient to sway the society had they been unable to satisfy the felt needs of others (Starr, 1983, p. 144).

According to Starr, then, over the years the medical profession has effectively provided notice of a commitment to address the ‘‘felt needs of others.’’ And the return for such investment has been that the medical profession has been granted the status of professional autonomy with stewardship of a contractually based public trust. Consequently, if there is a social expectation that the medical profession has an obligation to render aid, even at personal risk, such an expectation cannot be taken lightly, especially by our reasonable physician. Indeed, there is a phrase that is continuous in all the AMA codes from 1912 until 1955 that allows that physicians should be ready to respond ‘‘whenever temperate public opinion expects the service’’ (Clark, 2005). Again, the point is not to say that all or even most of our physicians should know these points explicitly, or to suggest that they have read the AMA Code on the matter. The point being that the physician’s role tacitly imbibes of such conceptions and the ethical literature is more a reflection of the general features of the role rather than the other way around. A reasonable physician, guided by prudence and due care in the exercise of her actions, thus is almost certain to be at least tacitly aware of the basic level of risk involved in adopting such a role.

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7. DUTIES TO SELF AND RESTRICTING OBLIGATIONS TO PERSONAL RISK It has been noted that due to expert knowledge and ability, physicians have obligations more like lifeguards than the average bather on the beach. Similarly, during national threats effecting the health and safety of its citizens, such as injuries and illness resulting from terrorism or bioterrorism, physicians carry a higher burden of responsibility than the average citizen, though both have obligations. Even so, personal risk, when substantial, may exempt us from obligation to others. Our lifeguard would surely be excused from normal life-saving expectations if a drowning victim is seen caught in a strong current that plunges precipitously over a lofty cliff. Indeed, it is likely that splendid Samaritanism, in such cases, would not only fail to contribute to the critical need, but is likely in fact to compound it. The point was made long ago by Aristotle. Courage unmatched by wisdom often leads to rashness. That is, to behavior that undermines optimal effectiveness, improves nothing, and may even cause greater general harm than good (Aristotle, 2002). Since risk is ubiquitous, the issue, of course, is one of degree. While decisions will vary according to the situation and individual judgment, it has been noted that special training inherent in the profession should provide a degree of protection not available to the average citizen. In return, special efforts should be in place to set aside vaccines and other therapies for professionals to insure that health professionals are able to perform and be protected in their work (Wynia & Gostin, 2004). The point of protecting the helper first, for optimal effectiveness, is well made by the airline’s recommendation that if oxygen masks are dropped due to a sharp decline in cabin pressure, persons should secure their own masks before acting to assist others. Consequently, even if the leadership of the medical profession sometimes loses sight of a duty of service that includes personal risk, the extent of general notice implied throughout the broader social context continues to outrun those lapses. Hence, while the role of doctoring indeed can change to something more market driven, as conceived by the commodification movement, it seems that presently such an outcome remains at the periphery of a shared, functioning, and contractual conception of doctoring. My contention here has been that the reasonable physician, animated by the virtues of prudence and due care, recognizes that she occupies a role of doctoring that is grounded in the good of patients – including some personal risk – and that this role is founded ultimately upon a mutually supportive covenant of public trust.

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NOTES 1. Patrick Wallis raised a variety of arguments focusing on what I believe amounted to a point similar to the one articulated here (see acknowledgment). 2. I address this further question, in part, in Clark, 2005.

ACKNOWLEDGMENT I wish to thank Patrick Wallis for substantial commentary and criticisms. While I do not assert that the challenge addressed in the present essay captures all or even most of what Wallis had to say, his criticisms, nonetheless, were the major stimulus for this essay.

REFERENCES Alexander, G. C., & Wynia, M. K. (2003). Ready and willing? Physician preparedness and willingness to treat potential victims of bioterrorism. Health Affairs, 22(5), 189–197. American Medical Association (AMA). (2002). Code of medical ethics: Current opinions. Chicago: AMA Press. Applbaum, A. (1999). Ethics for adversaries. The morality of roles in public and professional life. Princeton: Princeton University Press. Aristotle. (2002). Nichomachean ethics (2nd ed.). Irwin, T., trans. Indianapolis: Hackett. Clark, C. (2001). Trust in medicine. Journal of Medicine and Philosophy, 27(1), 11–29. Clark, C. (2005). In harm’s way: AMA physicians and the duty to treat. Journal of Medicine and Philosophy, 30(l), 65–87. Daniels, N. (1991). Duty to treat or right to refuse? Hastings Center Report, 21(2), 36–46. Feldman, H. L. (2000). Prudence, benevolence, and negligence: Virtue ethics and tort law. Chicago-Kent Law Review, 74(4), 1431–1466. Huber, S. J., & Wynia, M. K. (2004). When pestilence prevailsyphysicians’ responsibilities in epidemics. American Journal of Bioethics, 4(1), W5–W11. Simon, J.G., Powers, C.W., & Gunnemann, J.P. (1997). The responsibilities of corporations and their owners. In: T. Beauchamp & N. Bowie (Eds), Ethical theory and Business (5th ed., pp. 61–66). Englewood Cliffs, NJ: Prentice Hall. Starr, P. (1983). The social transformation of American medicine. New York: Basic Books. Thomson, J. J. (1971). A defense of abortion. Philosophy and Public Affairs, 1(1), 47–66. Wynia, M. K., & Gostin, L. O. (2004). Ethical challenges in preparing for bioterrorism: Barriers within the health care system. American Journal of Public Health, 94(7), 1096–1102. Zuger, A., & Miles, S. (1987). Physicians, AIDS, and occupational risk: Historic traditions and ethical obligations. JAMA, CCLVIII(14), 1924–1928.

CHAPTER 8 ETHICALLY JUSTIFIED LIMITS ON THE OBLIGATIONS OF PHYSICIANS AND HEALTH CARE ORGANIZATIONS IN RESPONSE TO EPIDEMICS AND BIOTERRORISM Laurence B. McCullough 1. INTRODUCTION Matthew Wynia and his co-authors and Charmers Clark, in their two chapters, take on thorny issues concerning the moral responsibilities of physicians – and, by implication, all health care professionals – regarding preparation for and response to epidemics (Clark, 2006; Wynia, Kurlander, & Green, 2006). Their chapters are especially timely, inasmuch as they address ethical challenges associated with bioterrorism, which, should it occur, could create an epidemic of catastrophic proportions, at least for the locality or localities in which the bioterrorism occurs. In this commentary, I provide a critical assessment of their chapters. I begin with a review of the foundational concept of the Wynia et al. chapter, social-trustee professionalism, and of the Clark chapter, a covenant of public trust. I then take up four issues: the moral demands of social-trustee professionalism and how the social-contract theory of medical ethics advocated by the framers of the 1847 Ethics and Epidemics Advances in Bioethics, Volume 9, 175–186 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09008-X

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American Medical Association Code of Ethics (American Medical Association, 1847) should be understood; social-role related obligations as ethically-justified limits on fiduciary responsibility in bioterrorism events and how such obligations should be addressed in a preventive ethics fashion by health care organizations; legitimate self-interests as ethically-justified limits on fiduciary responsibility and how such interests should be distinguished from mere self-interests and be addressed in a preventive ethics fashion by health care organizations; and the nature and limits of the standard of care in the large-scale emergencies that bioterrorism events could create.

2. SOCIAL-TRUSTEE PROFESSIONALISM Wynia and colleagues frame their analysis of and argument about various topics mainly on the basis of what they call ‘‘social-trustee professionalism’’ (Wynia et al., 2006). According to this ethical concept, physicians as a profession are entrusted with protection of ‘‘a core social good, health.’’ This includes both the health of individuals and of the community. A distinctive feature of Wynia and colleagues’ conception of social-trustee professionalism is that ‘‘the health of individuals is best served when physicians care, too, for the health needs of the community as a whole, i.e., public health’’ (Wynia et al., 2006). This is not simply a practical, clinical claim, although it surely is; such a claim is true, to boot. Wynia and colleagues argue for a moral synergy between the individual and social responsibilities as crucial to the concept of social-trustee professionalism: ‘‘Only if physicians take seriously their social obligations will society grant the medical profession the authority that allows it to provide effective individual care’’ (Wynia et al., 2006, emphasis original). In other words, as Wynia and colleagues claim in several places, professional medical ethics should be understood as a social contract between the medical profession and society. This social contract between society as a whole and physicians as a group is one condition for transforming that group into a profession. Individual, private contacts cannot confer professional status. On society’s part, such a social contract is worth making when physicians are worthy of trust, i.e., when physicians freely commit to an ethical obligation to care both for sick individuals and for the community as a whole. Wynia and colleagues therefore correctly identify as a core ethical concern regarding epidemics and bioterrorism the ‘‘general social trust in the medical profession’’ (Wynia et al., 2006). Should physicians in enough numbers (the history of medicine teaches us that there will always be

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shirkers among physicians; the key issue is that the number be very small) shirk their moral responsibilities in an epidemic, and especially in a bioterrorism event, they will forfeit societal trust and willfully abandon their social status as a profession. The result will be to destroy the profession of medicine, voluntarily and from within. Wynia and colleagues apply the concept of social-trustee professionalism to the many ethical dimensions of epidemics and bioterrorism. These include: detection with its subcomponents of access to healthcare, recognition of an epidemic as it begins to occur, and reporting; containment with its subcomponents of quarantine and isolation, which involves a balancing of patient autonomy and public health; and treatment with its subcomponents of risks to health care workers and the physician’s professional duty to treat (Wynia et al., 2006). I read Clark’s concept of a ‘‘mutually supportive covenant of public trust’’ to closely parallel Wynia et al.’s social-trustee professionalism, with an important difference. Clark understands this covenant essentially in terms of reciprocity. Physicians freely dedicate themselves ‘‘to the medical well-being of persons’’ (patients actually; one does not need to be a person in order to be a patient) and society, in reciprocation of this freely undertaken commitment, grants physicians ‘‘some generous benefits,’’ including ‘‘autonomy y, high social stature, and a sizeable income’’ (Clark, 2006). Physicians are free to pursue self-interest but they should do so in excess, they will violate the covenant and the implicit social contract would become voided. In elaborating the concept of a covenant of public trust, Clark makes no reference to the work of William May (1983), who pioneered the concept of covenantal medical ethics – a rather startling omission.

3. THE MORAL DEMANDS OF SOCIAL-TRUSTEE PROFESSIONALISM Wynia and colleagues freely acknowledge that the history of physicians’ staying in the community and responding to epidemics at risk to their own health and lives has been spotty, at best, as does Clark. Wynia et al. are clear that their social-contract account of medical professionalism has its roots in the 1847 American Medical Association’s Code of Ethics (American Medical Association, 1847). Indeed, the appeal to a social contract theory of professional ethics is one of the distinctive features of the Code. Clark’s appeal to reciprocity is a direct intellectual descendant of the 1847 Code, of which he seems unaware.

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At the same time, Wynia and colleagues also seem to take the view that professionalism in medicine has ancient roots that long predate the nineteenth century. For example, they claim that ‘‘physicians have an ancient obligation to continuous lifelong learning’’ (Wynia et al., 2006). Yet there is no mention of this in the Hippocratic writings and, as late as the eighteenth century, medical ethicists such as John Gregory (1724–1773) lamented the lack of scientific learning among physicians and the largely absent commitment to such learning. Wynia and colleagues also claim support in the Hippocratic Oath for a ‘‘concern for the greater social welfare’’ (Wynia et al., 2006), when this is essentially absent from the Oath. Ancient authority for the sort of obligations defended by Wynia and colleagues almost certainly does not exist (Baker, 1993). The Oath and accompanying texts should be read as shot through with a deep tension between entrepreneurial and guild self-interest, the dominant theme in my reading, and a nascent concept of a life of service to the sick. In actual clinical practice over the subsequent two millennia, the entrepreneurial and guild self-conception of physicians tended very much to dominate (McCullough, 1998). The dominance of individual and guild self-interest caused such major figures in the history of modern medical ethics as Gregory and his English successor, Thomas Percival (1740–1804) (Percival, 1803), great concern. Indeed, Gregory’s Observations on the Duties and Offices of a Physician and on the Method of Prosecuting Enquiries in Philosophy (Gregory, 1770) and his Lectures on the Duties and Qualifications of a Physician (Gregory, 1772), the first modern, English-language texts in the history of medical ethics, begin with a lengthy consideration of the economic conflicts of interest of physicians and how poor management of them by physicians has resulted in inadequate medical care that has cost untold numbers of patient their health and their lives. Between them, Gregory and Percival invent the concept of the physician as fiduciary of the patient (although neither uses the word). The physician as fiduciary of the patient has three components (McCullough, 1998). First, the physician commits to being competent, i.e., to practicing medicine to standards of intellectual excellence. Gregory and Percival knew where to turn for the best articulation of those standards, Francis Bacon’s (1561–1626) philosophy of medicine. Bacon argued, forcefully and convincingly, that medicine should be ‘‘experience’’ based and not based, as it had been for millennia, on the idiosyncratic beliefs and remedies of practitioners. Bacon and his eighteenth-century physician followers had a nascent concept of what we now know as evidence-based medicine (McCullough, 1998).

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Percival should be credited as among the first to identify formal elements of evidence-based medicine for hospital practice, e.g., in his proposal for monthly conferences to review the processes of care and outcomes in clinical cases (Percival, 1803). Second, the physician commits to the protection and promotion of the patient’s health-related interests as the physician’s primary concern and motivation, keeping self-interest systematically secondary. When self-interest becomes legitimate and not mere self-interest and thus a possibly ethically justified limit on fiduciary responsibility was a major issue for Gregory and Percival, to be sure, and it is at the heart of current ethics of physicians’ obligations in a bioterrorism event (see Section 5 for more details). Third, physicians should maintain and strengthen medicine as a social trust that exists primarily for the benefit of present and future patients and society, not primarily for the sake of the guild interests of physicians. The second component forms the basis for moral excellence as an antidote to individual entrepreneurial self-interest and the third component forms the basis for moral excellence as the antidote guild self-interest. Gregory and Percival both understood that this concept was far from being descriptive of the then-contemporary practice of medicine and clinical research. Gregory, especially, is unsparing in his criticism of the entrepreneurial, self-interested behavior of his contemporaries. Gregory and Percival forged the concept of the physician as fiduciary to reform medicine from a self-interested and guild-interested enterprise into a profession worthy of the name. Remarkably, given that they were both going very much against the grain, their concept took hold and medicine, for the first time in its history in Western cultures, began to become a profession (McCullough, 1998). The framers of the AMA (1847) Code express their obvious debt to Gregory and Percival. In the ‘‘Introduction’’ to the Code the framers invoke their concept of social contract: Every duty or obligation implies, both in equity and for its successful discharge, a corresponding right. As it is the duty of a physician to advise, so has he a right to be attentively and respectfully listened to. Being required to expose his health and life for the benefit of the community, he has a just claim, in return, on all its members, collectively and individually, for aid to carry out his measures, and for all possible tenderness and regard to prevent needlessly harassing calls on his services and unnecessary exhaustion of his benevolent sympathies (American Medical Association, 1847).

In other words, the social contract begins with the physician’s voluntary commitment to his (physicians were all men at the time) professional responsibilities to individual patients and to the community – and the Code separately addresses each, as well as patients’ and the community’s

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reciprocal obligations, from which derive physicians’ rights in the social contract (American Medical Association, 1847). Gregory and Percival would recognize the concept of social-trustee professionalism, as would the framers of the AMA Code; it originates in their texts. Gregory and Percival, I take it, would be critical of Clark’s covenantal reciprocity. Gregory, especially, would, correctly, take strong exception to Clark’s emphasis on prudence as a fundamental virtue of physicians. Clark does not explain what prudence involves, but we have a powerful explanation already in the historical tradition of medicus politicus or the politic doctor. Clark does not acknowledge his considerable debt to this tradition, which was brought to considerable sophistication in the work of Friedrich Hoffmann (1660–1742). For Hoffmann, the physician should be scientifically competent and guide the use of clinical competence by the virtue of prudence, which involves the rational calculation of self-interest and acting to protect it (Hoffmann, 1746). Even when self-interest is understood to be enlightened, i.e., to take into account the interests of others (Geyer-Kordesch, 1993), it is not a fundamental virtue of the fiduciary physician. Standing in Gregory’s and Percival’s texts, we become placed in a position to undertake a critical assessment of a key feature of Wynia and colleagues’ account of social-trustee professionalism. So the challenge for physicians is this: Social trust allows the state to confer professionalism independence on physicians, and this relative independence allows patients to trust physicians; but social trust derives from physicians’ meaningful and demonstrable sense of duty to the community, not just to their individual patients (Wynia et al., 2006).

The second part is correct, the first not. Relative independence granted by a society to the medical profession does not justify trust in physicians. Trust in physicians justifies the grant of independence, provided it is accompanied by rigorous self-regulation to enforce adherence to standards of intellectual and moral excellence. (Unfortunately for his account, Clark is altogether silent on this crucial point.) The central ethical challenge becomes setting reasonable limits on the physician’s obligations to care for patients in an epidemic or bioterrorism event. Clark calls for the exercise of prudence, but provides no guidance for whether self-interest should be self-referring or enlightened, nor for how self-interest should be rationally calculated and protected. Wynia and colleagues take the following position on this topic, which is at the very heart of the professional medical ethics of epidemics and bioterrorism events: Physicians have personal obligations, to family and self, that will inevitably weigh against the duty to treat. In our view, however, these other commitments should be

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secondary to the professional obligation. ... Granted a duty to treat must have some limitations in the degree of risk that ought to be assumed that is, though it may be difficult to delineate, there is a point at which duty gives way to heroism, and heroism to martyrdom (Wynia et al., 2006, emphasis original).

They go on to identify questions that need to be addressed in these matters. However, given what Wynia and colleagues say about social-trustee professionalism and what they write in this passage, social-trustee professionalism will sweep aside obligations to family and require heroic self-sacrifice in response to epidemics and bioterrorism events. In contrast to Clark, Wynia et al. seem to give no place even to physicians’ legitimate self-interests.

4. ETHICALLY JUSTIFIED LIMITS ON MEDICAL PROFESSIONALISM OBLIGATIONS TO FAMILY MEMBERS The framers of the AMA Code did not prohibit physicians from seeing to the safety of their families in an epidemic. They do not explain how this was to be accomplished but their readers would know: Their duty to do so could readily be fulfilled either, for physicians practicing from their homes, by directly instructing one’s wife to gather up children and valuables, engage a carriage (which only the well-to-do could afford), and leave from the city for the countryside, or, for the handful of physicians at the hospital, by sending a messenger with instructions to these effects. In this long-vanished and not lamented (for its assumptions about the social roles of men and women) past, it was a matter of course for physicians to be called upon to be self sacrificing, because only their sacrifice was required. In a bioterrorism event, it will not be the case that self-sacrifice will be required only of physicians. Their families will be directly involved, because the organizational structures of medicine and the social roles of women and men have changed since the middle of the nineteenth century. Physicians no longer practice from their homes. The burden of caring for victims of a bioterrorism event will fall mainly to physicians in hospitals, not to physicians in their offices. A bioterrorism event will have an effect on the community as well, the extent of which will probably not be determinable at first, thus raising quite legitimate concerns among physicians about the safety of their families. Limits on professional responsibility will, therefore, not just concern risk to physicians but also their obligations to their families. The framers of the AMA Code, it should be plain, did not think such obligations inescapable; neither should we. The Code’s framers could

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comfortably assume that the physician’s family obligations could be fulfilled with dispatch and effectively by the physician’s wife, freeing the physician to devote all of his attention and energy to the care of victims. We cannot realistically share this assumption. Appeals to the Code as the basis of a professional obligation of physicians to treat therefore becomes conceptually suspect, at best. Appeals to prudence, tempered by the need to maintain trust, need to be fleshed out, to provide guidance to physicians’ judgments and to organizational practice and policy. More argument is required. The central ethical challenge here is this: physicians’ obligations to their families cannot be so readily swept aside, for moral as well as practical reasons. Physicians, in addition to the social role as medical professionals, also take up other social roles that are, with complete ethical justification, regarded by physicians as at least equally important to their social role as medical professionals, if not more so. (There is no reason in ethics generally to think that one’s professional role should be regarded as more morally significant than one’s family roles.) These other social roles include (but are surely not limited to) being a spouse, being a parent of children still living at home, and being the child of a frail parent living at home or in the community. These first two social roles are structured by obligations that are, for the most part, voluntarily undertaken; the third social role is one into which one is born. These obligations, though they differ in their origin, have a common feature: Once they are undertaken or acknowledged, one cannot free oneself from them. As a matter of personal integrity, they cannot simply be discounted, as Wynia and colleagues appear to imply. Matters of obligation go beyond prudence and so Clark’s account is of little or no help in addressing this ethical challenge. An effective preventive ethics approach by health care organizations requires that physicians be allowed to fulfill family obligations. This is already recognized by some hospitals. One of my medical school’s affiliated hospitals specifically provides in its hurricane-preparedness plan for professional staff and employees to be allowed time to go home, during the storm warning period, to secure their family’s and property’s safety. A nurse colleague in another of our affiliated hospitals also explained to the hospital’s ethics committee, as we were working on the hospital’s bioterrorism plan – in the summer of 2001 – that the hospital at which she once worked in Miami, Florida, had space in one of its storm-proof buildings into which professional staff and employees could evacuate their families during the storm warning period. The goal of such organizational policies is sound: Remove an inescapable and therefore potentially conflicting ethical obligation to family by allowing health care professionals to fulfill it in advance of an emergency.

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In all likelihood, there will be little or no advance warning of a bioterrorism event. However, plans can be made ahead of time for the protection of families. For example, hospitals could provide emergency medication and vaccination kits to their professional staff and employees and train family members in their proper use. Evacuation of families into the hospital’s buildings may not be practical, given the likely paralysis of private and public transportation, and would probably not be safe for families, given the contamination of hospitals that is highly likely to result from a bioterrorism event. In addition, all possible space – rooms and halls alike – will be needed to care for victims. Protection of family members will also have the important effect of allowing physicians and other health care professionals not to be overly distracted from their professional responsibilities by unfulfilled family responsibilities. Physicians and health care professionals will therefore be able to focus on their fiduciary responsibilities to the victims and therefore reliably expected by victims, health care organizations, and society to do so. The ethical point here is substantive: the obligations of health care professionals to their families in a bioterrorism event cannot justifiably simply be swept aside. Nor can they be allowed simply to trump fiduciary responsibility. Hospitals and other health care organizations that should expect to receive victims should develop preventive ethics policies that prospectively address fulfillment of physicians’ and other health care professionals’ family obligations.

5. ETHICALLY JUSTIFIED LIMITS ON MEDICAL PROFESSIONALISM: LEGITIMATE SELF-INTEREST Wynia and colleagues frame limits on professional responsibilities that originate in physicians in terms of obligations of physicians to themselves (Wynia et al., 2006). Clark also uses this language, as well as the language of prudence. The language of obligations to oneself is not a helpful way to formulate the issue, because one can always release oneself from obligations that one has imposed on oneself. The ability to release oneself from an obligation contradicts the moral logic of obligations. One cannot release oneself from them; that can be done only by the individual or organization to whom the obligation is owed. Thus, when in natural language we use the locution, ‘‘our obligations to ourselves,’’ we really mean forms of self-interest that are of such significance in our lives that they become the basis for ethically-justified limits on our obligations to others. The central ethical and practical task thus becomes making a reliable distinction between one’s legitimate and one’s mere self-interests, a

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distinction that is core to the responsible exercise of prudential judgment under the discipline of fiduciary responsibility. Legitimate self-interests include protecting the necessary conditions for fulfilling one’s obligations in social roles that one reasonably judges to be significant. These include, as we have seen above, being a physician, spouse, parent, and child. The force of the preceding analysis is that these legitimate interests can indeed with ethical justification limit fiduciary responsibility. Again, the goal should be to address such legitimate interests and their protection in organizational preventive ethics policies. Legitimate self-interests may also include activities not connected to social roles that have a defining place in one’s life, e.g., playing a musical instrument seriously, attending spectator sporting events, etc. In the routine practice of medicine, there is probably a place for protecting such legitimate self-interest. In an emergency and a fortiori in a large-scale emergency, there will be no such place. All other forms of self-interest should be regarded as mere self-interest. Uncertainty about whether a specific self-interest should be regarded as a legitimate self-interest should be managed under the assumption that it is a mere self-interest. In other words, the burden of proof is on the physician as a fiduciary professional to show reliably that any candidate self-interest should be judged by that physician and by others to be a legitimate self-interest.

6. THE FIDUCIARY STANDARD OF CARE IN A BIOTERRORISM EVENT Neither Wynia and colleagues nor Clark take up a major ethical issue concerning bioterrorism events: How should physicians, other health care professionals, health care organizations, and therefore victims, their families, and society understand the standard of care in responding to such events? It has been a staple of ethical theory for centuries that, in emergencies, the rules that prevail in non-emergencies, i.e., the rules that routinely apply, are suspended. The standard of care in the routine practice of medicine is a function both of evidence-based clinical judgment and the resources required to put that judgment into effect in the clinical management of the patient’s problem or condition. Responsible disaster planners should assume that a bioterrorism event will occur or rapidly evolve as a large-scale emergency. Organizational resources will almost certainly be quickly overwhelmed. As a consequence, the standard of care that prevails in the routine practice of hospital-based medicine,

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including emergency medicine, will no longer apply. Triage, which is very well understood as an ethical principle of emergency medicine, will apply. Triage principles should be applied rigorously and without favor to the powerful, the well placed, the noisy, or the well-armed (who should simply and emphatically be told to lay down their weapons and act like responsible citizens). In a large-scale bioterrorism event, our obligations of social solidarity as citizens will be put to the test, as they were on September 11, 2001. Physicians and health care organizations, as they implement triage principles and then do the best they can in response to the ensuing disaster that will surely overwhelm even these otherwise reliable principles, should understand themselves to be justifiably enforcing our obligations to make justified sacrifices for the sake of others. To frame the ethical issues as a conflict between patient or individual autonomy and the good of the community will be conceptually erroneous and therefore lack intellectual and moral authority. The history of ethics teaches us repeatedly that our moral obligations, including moral obligations of social solidarity, justifiably limit our autonomy. This is precisely what moral obligations are designed to do. Adults who fail to fulfill their moral obligations should not be understood to be exercising their autonomy with either intellectual or moral authority. Enforcing their obligations, by restricting their autonomy as necessary, is therefore altogether ethically justified.

7. CONCLUSION Wynia and colleagues and Clark are to be saluted for their accounts, respectively, of physician professionalism and covenantal prudence regarding epidemics and bioterrorism events. The history of medical ethics is of more than antiquarian interest in this, as in so many other topics in bioethics. The history of medical ethics provides us with a critical stance from which to critically assess their arguments. Standing in the history of medical ethics, I have undertaken here to critically assess and correct their accounts, especially of fiduciary professionalism and the social contract theory of medical ethics in the AMA 1847 Code of Ethics and of Hoffmannian prudence. Like Wynia et al. and Clark, I have also undertaken to critically assess current ethical issues from the rich, but in bioethics, neglected perspective that standing in the past affords. The result of doing so is to avoid the all-too-common breathless approach that characterizes so much of bioethics commentary about supposedly new and unprecedented issues sprung upon us unawares by advances in medicine and biotechnology, in this case

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advances in bioweapons. By incorporating into both its self-understanding and its methods of analysis and argument the history of medical ethics and the critical stance that it affords us, the work of bioethics becomes sturdier and more fully conducted as a mature field of the humanities. Bioethics thus better prepares itself to prepare us for the ethical challenges of epidemics, including bioterrorism events.

REFERENCES American Medical Association. (1847, 1999). Code of ethics. In: R. Baker, A. L. Caplan, L. L. Emanuel & S. R. Latham (Eds), The American medical ethics revolution: How the AMA’s code of ethics has transformed physicians’ relationships to patients, professionals, and society (pp. 324–334). Baltimore: The Johns Hopkins University Press. Baker, R. (1993). Medical propriety and impropriety in the English-speaking world prior to the formalization of medical ethics: Introduction. In: R. Baker, D. Porter & R. Porter (Eds), The codification of medical morality: Historical and cultural studies of the formalization of western medical morality in the eighteenth and nineteenth centuries: Volume one: Medical ethics and etiquette in the eighteenth century (pp. 15–17). Dordrecht, The Netherlands: Kluwer Academic Publishers. Clark, C. C. (2006). Doctors, duties, and dangers: The reasonable physician and contagious populations. In: J. Balint, S. Philpott, R. Baker & M. Strosberg (Eds), Ethics and epidemics. London: Elsevier. Geyer-Kordesch, G. (1993). Natural law and medical ethics in the eighteenth century. In: R. B. Baker, D. Porter & R. Porter (Eds), The codification of medical morality: Historical and cultural studies of the formalization of western medical morality in the eighteenth and nineteenth centuries: Volume one: Medical ethics and etiquette in the eighteenth century (pp. 123–140). Dordrecht, The Netherlands: Kluwer Academic Publishers. Gregory, J. (1770, 1998). Observations on the duties and offices of a physician and on the method of prosecuting enquiries in philosophy. In: L. B. McCullough (Ed.), John Gregory’s writings on medical ethics and the philosophy of medicine (pp. 93–159). Dordrecht, The Netherlands: Kluwer Academic Publishers. Gregory, J. (1772, 1998). Lectures on the duties and qualifications of a physician. In: L. B. McCullough (Ed.), John Gregory’s writings on medical ethics and the philosophy of medicine (pp. 161–245). Dordrecht, The Netherlands: Kluwer Academic Publishers. Hoffmann, F. (1746). Medicus politicus; sive regulae orudentiae secundum quas medicus iuvenis studia sua et vitae rationem dirigere debet. Lugduni Batavorum: Apud Phillipum Bonk. May, W. F. (1983). The physician’s covenant: Images of the healer in medical ethics. Philadelphia, PA: Westminster Press. McCullough, L. B. (1998). John Gregory and the invention of professional medical ethics and the profession of medicine. Dordrecht, The Netherlands: Kluwer Academic Publishers. Percival, T. (1803). Medical ethics; or, a code of institutes and precepts, adapted to the professional conduct of physicians and surgeons. London: J. Johnson. Wynia, M. K., Kurlander, J. E., & Green, S. K. (2006). Physician professionalism and preparing for epidemics: Challenges and opportunities. In: J. Balint, S. Philpott, R. Baker & M. Strosberg (Eds), Ethics and epidemics. London: Elsevier.

CHAPTER 9 ETHICS AND EPIDEMICS IN THE DEVELOPING WORLD: THE CASE OF AIDS IN AFRICA: TREATMENT CHALLENGES Angela Wasunna and Daniel W. Fitzgerald ABSTRACT No other region of the world has suffered from such devastating epidemics in the recent past than sub-Saharan Africa. HIV/AIDS poses the worst single health threat on the continent and approximately 28.5 million of people infected with HIV/AIDS are in sub-Saharan Africa, yet, less than 8% have access to treatment. As African countries start or continue to expand their HIV/AIDS treatment programs with the assistance of international donors, they are facing several ethical and health policy challenges, including difficult decisions on how to ration available treatment, the high cost of drugs, the complexity of treatment regimens, the inadequacy of health and delivery systems, the lack of knowledge about treatment, and the threat of drug resistance.

INTRODUCTION No other region of the world has suffered from such devastating epidemics in the recent past than sub-Saharan Africa. In the last 100 years there have Ethics and Epidemics Advances in Bioethics, Volume 9, 189–207 Copyright r 2006 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 1479-3709/doi:10.1016/S1479-3709(06)09009-1

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been outbreaks of meningitis, cholera, malaria, measles and hemorrhagic fevers including Ebola, Lassa and tuberculosis in many parts of Africa. And now HIV/AIDS. Epidemics in Africa are associated with a variety of conditions including medical conditions (immunological susceptibility of the population and poor nutrition), demographic conditions (mobility and population displacement), socio-economic conditions (poor living and sanitation conditions) and climatic conditions (drought, flooding and dust storms). Curbing and controlling these epidemics are a daunting challenge to developing countries, most of whom do not have effective disease surveillance systems to assist them in priority setting, planning, resource mobilization and allocation, prediction and early detection of epidemics. Many African countries therefore rely, to a large extent, on international humanitarian organizations to assist them in dealing with epidemic outbreaks when they occur. HIV/AIDS is the most devastating epidemic on the African continent – 70% of the entire world burden of HIV/AIDS is borne by Africa. As such, it will be the main focus of this chapter; however, many of the ethical challenges raised by HIV/AIDS apply to other infectious diseases in Africa (including tuberculosis and malaria).

HIV/AIDS: ‘‘A CRISIS OF UNPRECEDENTED PROPORTION’’ In the last two decades, over 30 million people have died of HIV/AIDS. Today, an estimated 40 million people live with HIV/AIDS – approximately 28.5 million of them in sub-Saharan Africa. Outside of Africa, the Caribbean (Haiti particularly), India, Russia and China have high infection rates (UNAIDS, 2004a). Globally, just under half of all people living with HIV and AIDS are female. In sub-Saharan Africa, women and girls make up almost 57% of all people infected. In most other regions, women and girls represent an increasing proportion of people living with HIV, compared to five years ago (UNAIDS, 2004b). Differences in the spread of the epidemic can be accounted for by a complex interaction of sexual behavior and biological factors. Sexual behavior patterns are generally determined by cultural and socioeconomic factors. In sub-Saharan Africa, some traditions and socioeconomic developments have contributed to the extensive spread of AIDS, including the poor social status of women, widespread poverty, the collapse of public

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health systems, unemployment, rapid urbanization, wars and population displacement. There are a number of effective strategies for preventing HIV infection (such as education and the proper use of condoms); however, none of these measures have been fully implemented by most African countries. The majority of prevention programs are set up as pilot programs covering less than 5% of the eligible populations (Berkley, 2002). There is an urgent need to expand prevention programs throughout the continent. Research is also currently being carried out on ‘‘culturally appropriate’’ prevention methods, including female-controlled interventions, such as microbicide gels (Berkley, 2002). Despite the availability of treatment for AIDS in the form of antiretroviral therapy (ARVs), such treatment has been largely confined to rich, industrialized countries. Previously, there was much doubt in the international community that poor countries with high burdens of HIV could afford, let alone, administer ARVs. Prevention was touted as the only hope of curbing the epidemic in developing countries. Debates about prevention and treatment became so divisive within the international HIV/AIDS community that the two strategies were often presented as distinct and opposed interventions. The bone of contention in these forums was whether it was cost-effective to treat HIV/AIDS in resource-constrained settings (Farmer, 2002). In the last five years, there has been much advocacy for the provision of AIDS treatment in poor countries. Much of the pressure has come from human rights groups, people living with HIV/AIDS and other civil society organizations. Access to AIDS drugs is now viewed as a global emergency, which the world can no longer ignore. While pharmaceutical companies have a huge stake in maintaining their high prices for HIV/AIDS drugs, they have begun lowering their prices in the face of fierce public criticism. Some of the major pharmaceutical companies that have entered into deals with the World Health Organization to offer substantial discounts for HIV/AIDS drugs in developing countries include Merck & Co., Bristol-Myers Squibb Co, Glaxosmithkline PLC, Boehringer Ingelheim GmbH and Roche Holding AG. Other institutions such as the William J Clinton Presidential Foundation, the World Bank and UNICEF are helping countries to gain access to inexpensive generic AIDS drugs. In January 2004, for example, the Clinton Foundation announced that it had brokered deals for two American diagnostics companies to provide testing machines as well as chemicals and training in a dozen African and Caribbean countries at discounts of up to 80% (McNeil, 2001).

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In addition to these initiatives, programs to provide treatment have been set up by major organizations and lending institutions including:  The Global Fund to Fight AIDS, Tuberculosis and Malaria – The Global Fund has been in operation for about three years, and it has promised to spend $4.8 billion to fund 214 proposals among 121 countries through 2008. The Global Fund aims to provide ARVs to treat at least 700,000 people in the next few years spending at least $400 per patient per year for the drugs (Schwartlander et al., 2004)  The United States Presidential Emergency Plan for AIDS Relief (PEPFAR) was announced by President George W. Bush in 2003. The president pledged $15 billion in five years for HIV/AIDS, tuberculosis and malaria efforts in approximately 16 countries. The main goals of the program are to prevent 7 million new HIV infections, treat 2 million HIV infected people and care for 10 million HIV-infected individuals and AIDS orphans (Curran, 2004).  The World Health Organization’s Three by Five Program aims to provide ARVs to three million people living with AIDS in developing countries and those in transition by the end of 2005. The World Health Organization employs a comprehensive strategy based on five main pillars, namely 1. global leadership, strong partnership and advocacy; 2. urgent, sustained country support; 3. simplified, standardized tools to deliver ARVs; 4. effective reliable supply of medicines and diagnostics and 5. rapid identification and reapplication of new knowledge and success (WHO & UNAIDS, 2003).  The World Bank developed a multi-country HIV/AIDS program (MAP) in 2000 to help African countries strengthen their national treatment programs. The Bank places much emphasis on programs that promote prevention, treatment and care among women and young people. By 2003, the World Bank had disbursed and/or committed approximately $848 million to these programs in African countries (Curran, 2004). Countries participating in the MAP program have to meet the following criteria: 1. Satisfactory evidence of a strategic approach to HIV/AIDS developed in a participatory manner. 2. Existence of a high-level HIV/AIDS coordinating body, with broad representation of key stakeholders from all sectors, including people living with HIV/AIDS.

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3. Government commitment to quick implementation arrangements including channeling grant funds for HIV/AIDS activities directly to communities, non-governmental organizations and the private sector. 4. Agreement by the government to use multiple implementation agencies, especially NGOs/community based organizations. (World Bank Group, 2001). Global funding for HIV/AIDS in resource constrained countries has, as a result, increased from just over $300 million in 1999 to an unprecedented $3 billion in 2002 and $4.7 billion in 2003, with additional funding promised by foreign governments and international donor agencies (WHO and UNAIDS, 2003). These developments in funding for ARVs have also been accompanied by other positive steps that have made the administration of treatment in poor countries easier. The development of simpler treatment regimens, the dramatic drop in the cost of ARVs (from $10,000 to $200 per patient, per year), and consensus building around the setting up of treatment protocols for resourceconstrained settings, are some examples of such progress (CHGA, 2004). Unfortunately, of the six million people in developing countries who currently need ARV therapy, fewer than 8% are receiving it, and without rapid access to properly managed treatment these millions of women, children and men will die (WHO and UNAIDS, 2003). Despite the fact that antiretroviral drugs especially when used in combinations of three or more, can dramatically improve the health of people living with HIV/AIDS around the world, for the vast majority of infected people in need, ARVs are still out of reach. As African countries start or continue to expand their treatment programs, they are facing several ethical and health policy challenges, including difficult decisions on how to ration available treatment, the high cost of drugs, the complexity of treatment regimens, the inadequacy of health and delivery systems, the lack of knowledge about treatment, and the threat of drug resistance. In addition, provision of rationed HIV/AIDS treatment in high prevalence areas affects relationships between infected persons and their families (caregivers), between families and communities, between health care providers and patients, and at a broader level, among institutions providing care, both local and international. In order to meet some of these challenges, several developing countries have to develop comprehensive national HIV/AIDS programs that steadily build their public health sector capacities with the long-term goal of providing universally available HIV/AIDS treatment (Wasunna, 2004).

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RATIONING AIDS TREATMENT: WHAT DOES JUSTICE REQUIRE? The immediate need for HIV/AIDS treatment in poor countries far outstrips the resources currently available to buy drugs. The World Health Organization estimates that only 400,000 HIV-infected persons in developing countries currently receive ARVs of any kind – about half of them in Brazil alone. In Africa, there are currently 100,000 people on ARVs, yet about 4.4 million people are in immediate need. South Africa, for example, has approximately 463,000 currently in need of treatment yet the government can only treat 138,000 by 2004–2005 (Rennie, 2004; UNAIDS, 2004b). In Kenya, the number of people in immediate need of urgent ARVs is estimated at 200,000 people. However, the number of people receiving ARVs is currently estimated to be 19,000, representing only 10% of the current demand. Faced with this problem, countries like Kenya and South Africa and the others under the WHO’s program have to decide how to ration treatment, that is, how to allocate the limited available treatment. In essence, they have to decide ‘‘how to decide’’ who gets treatment. Rationing is linked to the concept of sacrifice, and to emergency or unusual situations, where a limited resource needs to be apportioned in order to do the greatest good (White & Waithe, 1994). Choices and tradeoffs have to be made in any rationing policy. Distributive justice (or allocative justice as it is sometimes known) is the main ethical principle concerned with ‘‘fairness’’ or the equity of distribution of resources. It refers to the proper distribution or allocation of social benefits and burdens. In context of AIDS, how can the concept of distributive justice be used to promote equitable rationing in environments with limited resources? (Wasunna, 2004) It may be said that a man’s due or right is that which is his by virtue not merely of the law or of prevailing moral rules, but of valid moral principles, and that a society is just if it accords its members what is required to accord them by valid moral principles (Frankena, 1962). In his book, Theory of Justice, the great philosopher, John Rawls explained that the way in which we form stable and just societies is through building consensus that merits endorsement by rational and informed people of good will (Rawls, 1971; Kopelman, 1995). Rawls argued that this process requires a commitment to three main principles of justice:  Each person is to have an equal right to the most extensive total system of equal basic liberties compatible with a similar system of liberty for all.

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 Offices and positions are to be open to all under conditions of equality of fair opportunity – persons with similar abilities and skills are to have equal access to offices and positions.  Social and Economic institutions are to be arranged so as to benefit maximally the worst off (Rawls, 1971). There are however, several ways to think about distributive justice that go beyond these formal theories of justice, as expressed by these maxims of justice: 1. 2. 3. 4. 5. 6.

to each person an equal share, to each person according to individual need, to each person according to individual effort, to each person according to societal contribution, to each person according to merit and to each person according to the agreements he has made (Beauchamp, 1980, p. 134).

These ideas about justice have been developed into various theories that are applied to the problem of just allocation of scarce health resources. Utilitarian theorists, for example, argue that justice is served when the greatest good is provided to the greatest number of people. They would thus support the seeking of cures for more common (rather than rare) diseases, adopt programs that help many rather than few, and generally use funds where they will have the largest aggregate positive impact on the most people (Wasunna, 2004). Egalitarian thinkers attempt to solve allocation dilemmas by holding that access to the same benefits, goods and services should be provided to everyone on the same basis. For expensive and scarce resources, they would perhaps advocate the use of lotteries so that all similarly situated individuals would have an equal opportunity and be recognized as of equal worth and need (Wasunna, 2004). Libertarians place emphasis on contribution and merit in a free market arrangement. They argue that the primary responsibility for health care lies with private citizens and not with the state. They would assert, therefore, that market forces and personal choice should shape the distribution of scarce resources. Other theorists argue that selecting people fairly requires a deliberative process, and that the distribution of social goods is fair when impartial people agree on the procedures that should be used for distribution (Daniels, 2004). Others argue that priority in the allocation of a scarce resource should be given to the worst off or to the least advantaged. This principle, also referred

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to as the ‘‘maximin principle’’ would require countries and governments to give preference to the poorest, lowest socio-economic class and the most vulnerable in a given population (Macklin, 2004). There is not much consensus among health policy makers on which of the above theories should apply to the allocation of scarce health resources, and there can simply be no universal agreement on the single best distributive justice theory. However, some theories are better suited in certain contexts than others, while others if applied alone, are clearly inadequate. A free market enterprise for HIV/AIDS drugs for example, would not be a fair and just option for poor African countries. There have to be trade-offs between economic efficiency and social equity (Rosen, Sanne, Collier, & Simon, 2004). It is thus important for countries to deliberate on the various methods to allocate resources in a manner that is just and equitable, that maximizes good, and that is best suited to the socio-economic context and culture in the country.

REALITIES ON THE GROUND Rationing HIV/AIDS treatment in Africa is a complex process riddled with political, economic, medical and cultural considerations. Even though countries may not have any formal or explicit rationing policies, rationing still occurs implicitly, by cost, by access to health care infrastructure, by queuing, by loan/grant conditions, and when health care professionals make discretionary decisions about how to use the available treatment (Rennie, 2004). Currently, countries are setting up their own criteria for selecting candidates based on a variety of factors. Countries like Kenya subscribe to the ‘‘maximin principle’’ and they argue that there are certain groups that merit special consideration for treatment, such as victims of rape, people who became infected during vaccine trials or through administration of infected blood, HIV/AIDS orphans, and infected pregnant women. In South Africa, Medicins Sans Frontiers has an elaborate selection process, which includes giving preference to patients on the basis of the number of dependents they have, their health status, level of income and the voluntary disclosure of their HIV status (Wasunna, 2004). The Indian government has identified three main target groups namely (a) seropositive mothers who participated in prevention of parent-to-child transmission programs, (b) seropositive children o15 years and (c) people living with AIDS as deserving of priority in the selection of treatment candidates (New Delhi Newspaper, 2003).

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Some countries have decided to set up treatment programs where some basic health infrastructure exists. ARV programs require close surveillance by care providers, careful adherence to therapeutic regimes, and access to laboratory facilities for continual testing so that the treatment program can be adjusted if necessary (CHGA, 2004). Unfortunately, in many developing countries, this limits such treatment programs to urban areas. Outside the capital of Nairobi, Kenya for example, there are few laboratory facilities carrying out CD4 tests. It can be argued that situating a treatment program in an existing health system that inherently favors the better-off (who generally live in urban areas) only serves to exacerbate existing inequities in health care systems that discriminate against the rural poor (Wasunna, 2004). The World Health Organization has recommended using medical criteria (disease progression) as the way to select candidates for its Three by Five program. Under this program, patients with CD4 counts that are 200 or below or those clinically diagnosed with AIDS (where CD4 testing is not possible) are given priority. This approach makes certain value judgments about those individuals who do not meet the set criteria. People with CD4 counts greater than 200 might argue that they stand to benefit more than those whose disease has progressed significantly if they are given early access to treatment (Wasunna, 2004). That is, they may argue that this particular technical criterion does not maximize the potential good that could result from the program. In its 2004 Guidance on Ethics and Equitable Access to HIV Treatment and Care, the WHO recommends that countries set up a ‘‘fair process’’ to select who gets the limited HIV/AIDS treatment. The Guidance requires that such process:  be public and transparent – involving publicly available rationales for the priorities that are set;  have relevance – the rationales must rest on reasons, principles and evidence which the community views as relevant to fair decision-making about priorities;  have a revisions and appeals mechanism – in light of new evidence, such process must allow for revisiting and revising decisions, and for an appeals process that protects those with legitimate claims against the policies adopted and  have an enforcement and regulation mechanism to ensure that conditions are met (WHO, 2004). The WHO Guidance only provides policy recommendations, and is not binding on countries or institutions receiving monies for treatment. We can

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therefore expect that countries will take a variety of other factors into consideration when deciding who should receive treatment, and what sort of process should be used to reach such decisions. Some countries may give preference to health care workers, physicians, nurses, skilled medical laboratory technicians, counselors providing voluntary counseling and testing (VCTs) and others essential to providing medical care and treatment (Macklin, 2004). Countries ravaged by war and political instability might make the argument that, before any national treatment program can be implemented, infected military and security personnel should be treated so that they can maintain the civil order necessary for scale-up programs. Deciding who gets treatment, and how such decisions should be made, can never be uniform across countries and regions. However, in our experience in developing countries, we fear that in the absence of a structured, transparent and independent decision-making processes, there is a real danger that some countries will determine who gets treatment in ethically questionable ways, or through processes that are likely to be inequitable (biased in access) and open to abuse and corruption (McCoy, 2003). As expressed by a certain philosopher: Medical rationing is a profoundly political process – when a good is both scarce and highly valued, it will be the locus of a power struggle y A continuous effort is needed to avoid scarce medical resources being channeled along the existing lines of unequal power relationships y Those with the greatest socio-economic power in society are most likely to gain access to the scarce good, and those with the least socio-economic power are most likely to be excluded y Left unchecked, rationing decisions will strongly reflect existing social divisions and inequalities (Rennie, 2004).

We also believe that countries providing treatment should uphold internationally recognized human rights in their selection process. In other words, treatment administrators should not exclude potential candidates without just cause, and on grounds such as gender, sexual orientation, religion and ethnic background. Despite our strong recommendation that countries set up fair rationing processes, we also believe that the provision and administration of treatment should not be delayed in the name of perfecting the decision-making process or in the name of finding the best ethical theories to support pragmatic decisions. We strongly believe that making concrete attempts to anticipate and address ethical problems will make for more effective and equitable programs, as will a commitment to reconsidering and refining these ethical hurdles as the programs progress (Wasunna, 2004). We therefore echo the call made by the World Health Organization, that the risk that programs

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will not be perfectly fair, should not be used as an excuse to delay action (WHO, 2004).

INFRASTRUCTURE AND PERSONNEL GAPS Aside from the problem of selection criteria, countries expanding their treatment programs have to ensure that they have sufficient infrastructure. If these systems do not operate efficiently and effectively, the proper delivery and administration of drugs will be difficult or impossible. Unfortunately, the vast majority of African countries have poor health systems. Problems with these systems arise mainly from a lack of resources, including the inability to procure and sustain affordable drug supplies, the inability to manage complicated laboratory monitoring, a lack of trained personnel and inadequate community education strategies to encourage compliance. Most countries also have the problem of corruption at various levels, coupled with the absence of sufficient political will to improve health systems. In the last 20 years, most African countries have seen a decline in their public health services for reasons ranging from increased poverty, poor governance, as well as the pressure from the international lending agencies to privatize health care services and downsize government health agencies. In some cases, governments have all but abandoned their responsibility to provide public health care services to their citizens due to these factors. This has left much of the government health infrastructure in these countries in a deplorable state – unable to provide even the most basic of care. Medical care of people living with HIV/AIDS requires the treatment of serious coinfections such as tuberculosis (the leading cause of death in people with HIV), malaria, hepatitis and sexually transmitted diseases. Yet most countries in Africa do not meet the WHO’s minimum standards for the number of physicians or nurses per 100,000 population (Steinbrook, 2004). Shortages of health personnel are exacerbated by migration to the private sector or other countries and HIV/AIDS related attrition (Attawell & Mundy, 2003). In Lusaka, Zambia, for instance, the HIV prevalence among midwives is 39% and among nurses, 44%. Botswana, a middle-income country in Africa, will require an additional 330 nurses to its current 4,400 to support national ARV programs. In Tanzania, there are fewer than 100 physician specialists in the public sector and many regional district hospitals have no physicians or medical officers (Attawell & Mundy, 2003). Paul Farmer of Partners in Health (a nonprofit organization that works in Latin America, the Caribbean, Eastern Europe and the United States)

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outlines some of the unanticipated practical challenges he and his team faced in their treatment program in Haiti:        

managing concurrent health problems including opportunistic infections, assessing generic drug quality, assuring uninterrupted drug supply (ability to forecast demand) and storage, maintaining and servicing of laboratory equipment, dealing with drug resistant HIV, training for and monitoring the rational use of ARVs, managing scarce resources in setting of extreme poverty, integrating traditional healers in an effective way in the treatment and care of patients and  responding to unemployment, lack of food and clean water (Farmer, 2002). African countries face similar challenges. These problems are further compounded by the lack of clarity or agreement on the minimum infrastructure required to deliver ARVs, and how to cost this, taking into account efficiencies of scale (Attawell & Mundy, 2003). Countries have to take steps to assess their public health infrastructure and determine what needs to be done to scale-up health facilities to allow for adequate treatment administration. Approaches to expand access to ARV treatment should simultaneously strengthen health systems, interact with treatment, prevention, and health care services and reach vulnerable groups. Furthermore, as countries scale-up their treatment programs in an environment fraught with uncertainty – both short and long term – they have an ethical obligation to create the necessary structures to learn from such programs, with a view to improving them. Operations research is therefore a critical element to the iterative process of improving quality of care. Countries have to take the necessary steps to invest in the creation of information systems to gather, analyze and manage the relevant data (Wasunna, 2004). Because of the great desire to administer treatment quickly, particularly since the funds to do so have started to flow, there may be a great temptation to bypass certain required processes. While the desire to expedite treatment is good, it creates an ethical imperative to explore, anticipate and make concrete provisions for any negative consequences that may arise due to these expedited actions. We argue that a careful balance has to be drawn between the ethical imperative to treat the sick immediately and the need to ensure that the expedited emergency treatment strategies employed will not fail dramatically for lack of sufficient infrastructure to the detriment of the affected population (Wasunna, 2004). Without a systematic approach to learning by

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doing, there is a great danger that programs may end up not only wasting limited life-saving resources, but also perpetuating potentially harmful health care practices – an ethically unacceptable state of affairs (Curran, 2004).

PREVENTION AND TREATMENT: THE NEED FOR A UNIFIED APPROACH As explained earlier, certain international AIDS forums pitted prevention strategies against treatment – the issue was framed as an ‘‘either/or’’ choice for developing countries. It was argued at the time that the most costeffective way to deal with the epidemic, particularly in the poorest countries, was to spend the limited resources on prevention, rather than treatment. With the poorest of African countries now receiving monies for treatment alongside prevention, this point is now moot. Both prevention and treatment are important. Having said that, globally, fewer than one in five people at high risk of infection have access to proven HIV prevention interventions such as voluntary HIV counseling and testing, condom promotion campaigns, treatment for sexually transmitted diseases and drugs and strategies to prevent mother-to-child transmission (Global HIV Prevention Working Group [GHPWG], 2004). It is estimated that about 90% of people living with HIV in developing countries do not know that they are infected. Just as there is an urgent need to expand treatment programs in African countries, there is an ethical imperative to increase access to prevention initiatives. While we applaud the recognition made by the international community that AIDS treatment in poor countries is akin to a human right, we should not allow this progress to relegate vital prevention programs to the rear. Experience in industrialized countries suggests that the availability and accessibility of HIV treatment has the potential to alter a person’s perception of the risks associated with HIV, and can lead to increased risk behavior. The latter possibility can be minimized by including HIV prevention services along with treatment programs in health care settings (GHPWG, 2004). Provision of treatment by governments and institutions/organizations in African countries is also raising ethical challenges for AIDS prevention researchers. Differing standards within a country’s public health sector raises dilemmas about what standard of care should apply to HIV research. For example, does a standard of care become established as soon as an intervention is available in the public health sector? How is availability determined? By theoretical access to the intervention, or by how many

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people are actually accessing the intervention at a particular level of the treatment program? (Singh, 2004) These conflicting standards in the provision of treatment in countries are also raising uncertainties about the obligations of AIDS prevention research sponsors. During enrollment for HIV prevention research, investigators screen high-prevalence populations to identify HIV negative people at risk for infection, and they inevitably also identify people already HIV infected. This raises a crucial set of questions about the nature and extent of obligations toward those identified as infected or at risk: 1. Do researchers have an obligation to treat HIV infected people (and their partners) identified during screening? 2. During the course of HIV prevention trials, participants will become infected. Do researchers have an obligation to treat these individuals and their sexual partners? If so, does such obligation stand for the entire lifetime of the infected individual? In many African countries where such prevention research is taking place, the standard of care for provision of treatment varies between (and within) the private and public sectors. What standard should prevention researchers adhere to if they do in fact decide to provide treatment? If, for instance, brand-name drugs are considered to be the standard of care by the government, should prevention researchers be expected to shoulder the costs of providing these drugs in areas in the country where the government does not yet provide such treatment? (Singh, 2004) This issue is one that requires urgent ethical clarity as it can have serious ramifications for prevention studies. In Cambodia, for example, a clinical trial to test a drug used to treat HIV, Viread, for the prevention of AIDS, was halted by the Cambodian government, when over one hundred local sex workers protested, and refused to participate in the study, citing insufficient safeguards, and failure to provide follow-up care should the subjects suffer drug side effects. The protesters also demanded that the company take care of the lifetime medical needs of any volunteers who contract AIDS during the experiment. Partially funded by the Bill and Melinda Gates Foundation, the proposed trial would have recruited almost 1,000 sex workers, who are at high risk of becoming infected with HIV. The trial would have given Viread to one group, and placebo to the other, over a period of a year to see if those taking the drug had a statistically lower incidence of HIV infection (James, 2004). The fate of the study remains in limbo. Local ethics review committees in many African countries, including Kenya, are beginning to require that before prevention research studies

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commence, research sponsors must make legally valid assurances that they will provide (or make arrangements to provide) treatment for life to those participants who become infected with HIV during the course of the study. While the intention of these governments is essentially good, such demands on prevention researchers (most of whom are carrying out such studies on limited grants), may act as a disincentive from doing such trials in the first place. Funding organizations like the NIH provide funding strictly for research while others like USAID provide financing for care outside of research settings. Trial participants are at the interface of both research and care. They participate in trials (research), and if they get infected, they need treatment (care). Because the care and research funding streams are severely restricted, trial participants who become infected do not have any avenues to receive care – unless programs are specifically created for them. Several research organizations are currently exploring various ways to address these questions. The National Institutes of Health’s HIV Vaccine Trials Network (HVTN), for instance, decided that participants who get infected in the course of trials should get treated – there is however, no consensus on how such treatment should be paid for and administered. In an HVTN site in Haiti, before trials start, private funders are identified and encouraged to donate money into a trust for treatment for volunteers who seroconvert during trials. The amount of money requested is based on the number of participants, anticipated infection rates, current price of providing antiretrovirals, and predicted survival rate of an HIV-1 infected person on standard therapy. The fund is overseen by investigators, a local institutional review board, and Haitian community leaders (Fitzgerald et al., 2003). The International Aids Vaccine Initiative (IAVI) has, likewise, proposed to provide baseline treatment insurance coverage for five years, but it is not clear what will happen after the five years are over. In South Africa, a proposal has been made for the government to establish a national trust fund to be operated by a managed health-care provider. The South African plan would allow volunteers who become infected during trials to access a national network of doctors for HIV-1 related treatment and care. Research sponsors would commit a fixed amount of money per infected volunteer per year to cover these costs for at least ten years (Tucker & Slack, 2003). These challenges must be addressed in ethically acceptable ways to ensure that prevention research takes into account the realities of the context within which such studies occur. More broadly, prevention services and research must not be allowed to wane as treatment programs in African programs are developed. Both are equally important.

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CREATING FAIR PROGRAMS While it is too beyond of the scope of this paper to determine what an optimal rationing program should look like (more studies and operational research are sorely needed), we are certain that the inclusion of the following eight (8) features can only improve the fairness of such a program, and we would urge countries providing treatment to take these factors into account.

EIGHT ELEMENTS OF A FAIR TREATMENT PROGRAM 1. There has to be a process to ‘‘decide who gets treatment.’’ 2. The concept of distributive justice should guide decisions on equitable rationing and countries have to deliberate on the various methods to allocate resources in a manner that is just and equitable, that maximizes good, and that is best suited to the socio-economic context and culture in the country. 3. Countries providing treatment should uphold internationally recognized human rights in their selection process. Countries should not discriminate among treatment candidates on the basis of gender, sexual orientation, religion and ethnic background. 4. The provision and administration of treatment should not be delayed in the name of perfecting the decision-making process or in the name of finding the best ethical theories to support pragmatic decisions. 5. Approaches to expand access to ARV treatment should simultaneously strengthen health systems, interact with treatment, prevention and health care services, and reach vulnerable groups. 6. Operations research is a critical element to the iterative process of improving quality of care, and countries have to invest in the creation of information systems to gather, analyze and manage the relevant data. 7. Both prevention and treatment are important – Prevention research must not be allowed to wane as treatment programs are developed. Both are equally important. 8. Donor funding for treatment must be sustained: It would be irresponsible for donors and other resource providers not to fulfill their commitments to funding ARVs for the next several years, and by so doing, interrupt the treatment of those already on ARVs.

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OPTIMISM AHEAD? Despite all the obstacles that African countries are facing as they deal with this catastrophic epidemic, there is still much hope. There are plans to continue to expand treatment programs to those who need them. It would be morally (and medically) irresponsible for donors and other resource providers not to fulfill their commitments to funding ARVs for the next several years, and by so doing, interrupt the treatment of those already on ARVs. The emergency scale up of antiretroviral therapy (ART) services will be a learning process, and from the beginning we must recognize that programs will not be perfect. Therefore, donors should not use imperfections in ART programs as an excuse to withhold funding. On the prevention research front, there is exciting microbicide research being conducted, that holds much promise for women – the population most affected by HIV/AIDS in Africa. Much, however, needs to be done. As expressed in a report by the Institute of Medicine, ‘‘Sustained action for expanding treatment for the HIV epidemic presumes solutions to numerous scientific and management challenges. At the same time, as the wealthy, middle-income, and poor nations join together to tackle the overarching challenge of bringing the pandemic under control, it bears emphasizing that the global problem of HIV/AIDS will most likely be present for decades despite research findings and optimized interventions y The world is indeed at the beginning of a very long path forward that will require vigilant and sustained support’’ (Curran, 2004, p. 17).

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