oxford handbook of bioethics

xC O N T E N T S

DENNIS MCKERLIE

PA RT I I I : B O D I E S A N D B O D I LY PA RT S

PA RT I V: T H E E N D O F L I F E

PA RT V: R E P R O D U C T I O N A N D C LO N I N G

PA RT V I : G E N E T I C S A N D E N H A N C E M E N T

PA RT V I I : R E S E A R C H E T H I C S

PA RT V I I I : P U B L I C A N D G LO B A L H E A LT H

N O T E S O N T H E C O N T R I B U T O R S

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Felicia Nimue Ackerman is Professor of Philosophy at Brown University. Her essays on bioethics have appeared in the Hastings Center Report, Midwest Studies in Philosophy, Physician-Assisted Suicide: Expanding the Debate (Routledge, 1998),

Ethical Issues in Modern Medicine (McGraw-Hill, 2002), and elsewhere. Her short stories on bioethical themes have appeared in Commentary, Mid-American Review,

Prize Stories 1990: The O. Henry Awards (Doubleday, 1990), Clones and Clones: Facts and Fantasies About Human Cloning (Norton, 1998), and elsewhere. She is writing Bioethics Through Fiction, a book of essays and short stories, forthcoming in the Rowman & Littlefield series Explorations in Bioethics and the Medical Humanities.

John D. Arras is Porterfield Professor of Biomedical Ethics and Professor of Philosophy at the University of Virginia, and a Fellow of the Hastings Center, Garrison, NY. His primary areas of interest currently include research ethics (with a focus on international trials), global justice and human rights, and methods of practical ethics. He consults regularly with the Centers for Disease Control and Prevention, Atlanta, Georgia, and the National Institutes of Health on ethical issues in research and public health practice.

Andrea Bonnicksen teaches courses in biomedical and biotechnology policy in the Department of Political Science at Northern Illinois University, where she is Presidential Research Professor. She is the author of three books, including Crafting a Cloning Policy: From Dolly to Stem Cells (Georgetown University Press, 2002). She is co-chair of the Ethics Committee of the American Society for Reproductive Medicine.

Allen Buchanan is James B. Duke Professor of Philosophy and Public Policy at Duke University. Buchanan’s work is mainly in Bioethics and in Political Philosophy. His most recent books are From Chance to Choice: Genetics and Justice (co-authored with Dan W. Brock, Norman Daniels, and Daniel Wikler; Cambridge University Press, 2000) and Justice, Legitimacy, and Self-Determination: Moral Foundations for International Law (Oxford University Press, 2003).

James F. Childress is the John Allen Hollingsworth Professor of Ethics at the University of Virginia, where he teaches in the in the Department of Religious Studies and in the Schools of Law and Medicine, and directs the Institute for Practical Ethics and Public Life. He is the author of numerous articles and several

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books in bioethics, including (with Tom L. Beauchamp), Principles of Biomedical Ethics, (5th edn., Oxford University Press, 2001). He has served on a number of governmental bodies addressing bioethics and public policy, including the National Bioethics Advisory Commission 1996 – 2001.

John K. Davis is an Assistant Professor of Philosophy at the University of Tennessee, Knoxville. His research and teaching interests include bioethics, ethical theory, and philosophy of law. In addition to autonomy and end-of-life care, he is interested in the methodology and epistemology of applying ethics to cases.

Matthew DeCamp entered the Duke University Medical Scientist Training Program (MD/Ph.D.) in 2000 and is currently pursuing graduate work in the Department of Philosophy. His current research focuses on the relationship between intellectual property rules and global distributive justice in global health.

Gerald Dworkin is Professor in the Philosophy Department at the University of California at Davis. He is also an adjunct Professor in the School of Law. He is the author of many articles and books in moral, political, and legal philosophy. His most recent book (co-authored with Sissela Bok and R. G. Frey) is Euthanasia and Physician-Assisted Suicide: For and Against (Cambridge University Press, 1998).

Ezekiel J. Emanuel is the Chair of the Department of Clinical Bioethics at the Clinical Center of the National Institutes of Health. He is a Fellow of the Institute of Medicine, the Association of American Physicians, as well as the Hastings Center, Garrison, NY. He is author of The Ends of Human Life: Medical Ethics in a Liberal Polity (Harvard University Press, 1991) and No Margin, No Mission: Health-Care Organizations and the Quest for Ethical Excellence (Oxford University Press, 2003), and co-editor (with Robert A. Crouch, John D. Arras, Jonathan D. Moreno, and Christine Grady) of Ethical and Regulatory Aspects of Clinical Research: Readings and Commentary (Johns Hopkins University Press, 2003).

John Harris is Sir David Alliance Professor of Bioethics at the Institute of Medicine, Law, and Bioethics, University of Manchester. In 2001 he was the first philosopher to have been elected a Fellow of the Academy of Medical Sciences. He has been a member of the Human Genetics Commission since its foundation in 1999. The author or editor of fourteen books and over 150 papers, his recent books include

Bioethics (Oxford University Press, 2001), A Companion to Genetics: Philosophy and the Genetic Revolution, co-edited with Justine Burley (Blackwell, 2002), and On Cloning (Routledge, 2004).

Søren Holm is Professorial Fellow in Bioethics at Cardiff Law School and Director of the Cardiff Centre for Ethics, Law, and Society. He is also adjunct Professor of Medical Ethics in the Section for Medical Ethics, University of Oslo. He has written on many subjects in bioethics and the philosophy of medicine, and his most recent publications have been on biobanking and on stem-cell research.

Louise Irving was formerly at the Institute of Medicine, Law, and Bioethics at the University of Manchester, where she was a research fellow on a three-year project, funded by the European Commission, which seeks to develop a legal and ethical framework for stem-cell research. She has written on the commodification of the human body, the relationship between analytic moral philosophy and bioethics, and issues of public health. Her main research interest is in the nature of freedom.

Bruce Jennings is Director of the Center for Humans and Nature, a private operating foundation that focuses on ethical issues in environmental and health policy, and Senior Consultant at the Hastings Center, Garrison, NY. He also teaches at the Yale University School of Public Health. He is author of numerous books and articles on ethical and social issues in health-care and public policy. He is co-author (with Willard Gaylin) of The Perversion of Autonomy: The Uses of Coercion and Constraint in a Liberal Society (2nd edn., Georgetown University Press, 2003). He is currently at work on a book on dementia, quality of life, and the ethics of long-term care.

Eric T. Juengst is Professor of Bioethics at the Case Western Reserve University School of Medicine, where he directs the Center for Genetic Research Ethics and Law. He has written widely on conceptual and ethical issues in genetics, and has served on the DNA Advisory Board of the FBI, the NIH National Advisory Council for Human Genome Research, the NIH Recombinant DNA Advisory Committee, the Ethics Committee of the American Society for Gene Therapy, and the National Academy of Sciences Committee on Human Genetic Diversity. He is an elected Fellow of the Hastings Center, Garrison, NY, and the Center for Genetics and Society, University of California, Los Angeles, and in 2006 was awarded the Golden Eurydice Prize for pioneering work integrating science and ethics from the European Commission’s International Forum on Biophilosophy.

Jeffrey Kahn is the Maas Family Endowed Chair in Bioethics and Director of the Center for Bioethics at the University of Minnesota. He holds additional faculty appointments in the university’s Medical School, School of Public Health, and Department of Philosophy. He has published over seventy-five articles in both the bioethics and medical literature, serves on numerous state and federal advisory panels, and speaks nationally and internationally on a range of bioethics topics. From 1998 to 2002 he also wrote the bi-weekly column ‘Ethics Matters’ on CNN.com.

Jason Karlawish is Associate Professor of Medicine, Fellow of the Center for Clinical Epidemiology and Biostatistics, and Senior Fellow of the Center for Bioethics and the Leonard Davis Institute of Health Economics at the University of Pennsylvania. He is the Associate Director of the Penn Memory Center and the Director of the Alzheimer’s Disease Center’s Education and Information Transfer Core, University

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of Pennsylvania. His research focuses on ethical issues in human subjects research and the care of persons with dementia.

Jeanette Kennett is Principal Research Fellow in the Centre for Applied Philosophy and Public Ethics, Australian National University, and School of Philosophy and Bioethics, Monash University. She is the author of Agency and Responsibility (Clarendon Press, 2001) and has published widely on philosophical and ethical issues related to moral responsibility, the self, and mental disorder.

Benjamin J. Krohmal is a fellow in the Department of Clinical Bioethics at the Clinical Center of the National Institutes of Health. His current focus is on research ethics and the ethics of health-care reform.

Alex John London is Associate Professor of Philosophy and an executive member of the Center for the Advancement of Applied Ethics and Political Philosophy at Carnegie Mellon University. The recipient of a New Directions Fellowship from the Andrew W. Mellon Foundation in 2005, he is also co-editor (with Bonnie Steinbock and John D. Arras) of Ethical Issues in Modern Medicine (6th edn., McGraw-Hill, 2003).

Florencia Luna is an Adjunct Researcher at CONICET (the National Scientific and Technological Research Council), Argentina. She is the Director of the Program of Bioethics at FLACSO (the Latin American University of Social Sciences) and co-director with Ruth Macklin of a research training grant of the National Institutes of Health in the United States. She was also the President of the International Association of Bioethics (2003 – 5). She is the author of Bioethics and Vulnerability: A Latin American View (Rodopi, 2006), and of Ensayos de bio´etica: Reflexiones desde el Sur (Fontamara, 2001), and co-editor (with Arleen L. F. Salles) of Decisiones de vida y muerte (Sudamericana, Buenos Aires, 1995) and (with Arleen L. F. Salles) Bioetica (Sudamericana, 1998).

Ruth Macklin is Professor of Bioethics at Albert Einstein College of Medicine in the Bronx, New York. She is the author or editor of twelve books and has published more than 200 articles in scholarly and professional journals. She is an elected member of the Institute of Medicine of the National Academies of Science, chairs the External Ethics Committee of the Centers for Disease Control and Prevention, Atlanta, Georgia, and serves as an adviser to the World Health Organization and the Joint United Nations Programme on HIV/AIDS. Her latest book is Double Standards in Medical Research in Developing Countries (Cambridge University Press, 2004).

Don Marquis is Professor of Philosophy at the University of Kansas. He teaches applied ethics and ethical theory.

Anna Mastroianni is Associate Professor at the School of Law and Institute for Public Health Genetics at the University of Washington. She holds additional

faculty appointments in the University’s School of Public Health and Community Medicine and Medical School. She has held a number of legal and federal policy positions in the United States and has served on several national advisory panels concerning issues of biomedicine and health policy. She has published numerous articles in the legal and bioethics literature, with specific interests in the legal, ethical, and policy issues related to human subjects research, public health, and the use of genetic technologies.

Dennis McKerlie is Associate Professor of Philosophy at the University of Calgary. He has published articles on egalitarianism, justice between age groups, and ancient philosophy.

Carolyn McLeod is Associate Professor of Philosophy at the University of Western Ontario. From 2004 to 2006 she was also a New Faculty Fellow in the Comparative Program on Health and Society at the Munk Centre for International Studies at the University of Toronto. She has published in bioethics and moral theory, on topics such as trust, autonomy, integrity, conscience, objectification, and commodification. Her book Self-Trust and Reproductive Autonomy (MIT Press, 2002), is part of the Basic Bioethics series of the MIT Press.

Jonathan D. Moreno is the Emily Davie and Joseph S. Kornfeld Professor and Director of the Center for Biomedical Ethics at the University of Virginia. He is an elected member of the Institute of Medicine and has served as senior staff to two presidential advisory committees and as a consultant to numerous public and private organizations. Among his books are Undue Risk: Secret State Experiments on Humans (Routledge, 2001) and In the Wake of Terror: Medicine and Morals in a Time of Crisis (MIT Press, 2003). His latest book is Is There an Ethicist in the House? On the Cutting Edge of Bioethics (Indiana University Press, 2005).

Ronald Munson is Professor of the Philosophy of Science and Medicine at the University of Missouri — St Louis. He has served as a bioethicist for the National Cancer Institute, the National Eye Institute, and the Veterans Administration, and is a member of the Human Studies Committee at Washington University School of Medicine. His books include Reasoning in Medicine (Johns Hopkins University Press, 1994), Outcome Uncertain: Cases and Contexts in Bioethics (Wadsworth, 2003), and Raising the Dead: Organ Transplants, Ethics, and Society (Oxford University Press, 2002). He is also the author of the novels Nothing Human, Fan Mail, and

Night Vision.

Thomas H. Murray is President of the Hastings Center, Garrison, NY. He has written or edited many books including The Worth of a Child (University of California Press, 1996), Cultures of Caregiving (with C. Levine; Johns Hopkins University Press, 2004), Genetic Ties and the Family (with M. Rothstein, G. Kaebnick, and M. A. Majumder; Johns Hopkins University Press, 2005), The

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Encyclopedia of Ethical, Legal, and Policy Issues in Biotechnology (with M. Mehlman; John Wiley, 2000), and Feeling Good and Doing Better: Ethics and Nontherapeutic Drug Use (Humana Press, 1984). He is Chair of the World Anti-Doping Agency’s Ethical Issues Review Panel.

Alastair Norcross is Associate Professor of Philosophy at Rice University. His articles on ethical theory and applied ethics have appeared in such journals as

Philosophical Review, Journal of Philosophy, Philosophy and Public Affairs, and Social Theory and Practice. He is co-editor, with Bonnie Steinbock, of Killing and Letting Die (2nd edn., Fordham, 1994).

Stephen G. Post is Professor in the Department of Bioethics, Case Western Reserve University School of Medicine, and was a Senior Research Scholar in the Becket Institute at St Hugh’s College, University of Oxford. He is Editor-in-Chief of The Encyclopedia of Bioethics (3rd edn., Macmillan Reference, 2004). He is an elected member of the Medical and Scientific Advisory Panel of Alzheimer’s Disease International, the recipient of a ‘distinguished service’ award from the Association’s National Board (1998), and the author of The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying (2nd edn., Johns Hopkins University Press, 2000).

Julian Savulescu is the Uehiro Professor of Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford, and Director of the Program on Ethics and the New Biosciences in the 21st Century School, University of Oxford. Qualified in medicine, bioethics, and analytic philosophy, he has published over 100 articles and is co-author (with R. A. Hope and Judith Hendrick) of the book Medical Ethics and Law (Churchill Livingstone, 2003).

Bonnie Steinbock is Professor of Philosophy at the University at Albany/SUNY. She is the author of Life Before Birth: The Moral and Legal Status of Embryos and Fetuses (Oxford University Press, 1992) and the editor of several books, including (with John Arras and Alex London) Ethical Issues in Modern Medicine (6th edn., McGraw-Hill, 2003).

Daniel P. Sulmasy, OFM is Sisters of Charity Chair in Ethics at St Vincent’s Hospital Manhattan, and Professor of Medicine and Director of the Bioethics Institute of New York Medical College. He is Editor-in-Chief of the journal

Theoretical Medicine and Bioethics. His latest books are The Rebirth of the Clinic and A Balm for Gilead: Mediations on Spirituality and the Healing Arts (both Georgetown University Press, 2006).

Stuart J. Youngner is the Susan E. Watson Professor of Bioethics and Chair of the Department of Bioethics at Case Western Reserve University School of Medicine. He has written and spoken extensively about definitions of death, organ and tissue transplantation, end-of-life decisions, and clinical ethics consultation.

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B O N N I E S T E I N B O C K

THE aim of this Handbook is to provide an up-to-date picture of the state of the art in bioethics. It makes no attempt to cover every issue in the field — there are excellent encyclopedias that serve this purpose (Post 2004; Murray and Mehlman 2000). Instead, it is a selective representation of some of the most important issues in contemporary bioethics. The chapters are surveys in that they inform the reader of what has been happening recently in each area, through a discussion of the relevant literature. At the same time, they are not neutral, encyclopedia-like articles, but original essays that reflect the particular ‘take’ of their authors. They are not intended for undergraduates or general readers, but rather for those with some knowledge of the field (scholars and graduate students) who want an authoritative and stimulating account of bioethics today.

My task as editor was to get the best and most interesting individuals in the field as contributors. This might be interpreted as meaning the best-known or most prominent bioethicists, and certainly this Handbook includes some of the most respected names in bioethics, people who have shaped, and continue to shape, the field. However, I also wanted to include some who are not as well known because they are in the early stages of their careers. These ‘up-and-comers’ represent the next generation of bioethicists. In addition, the aim was to reflect the interdisciplinarity that is fundamental to bioethics. Therefore, the volume includes individuals not only from my own discipline (philosophy), but also from theology, medicine, law, political science, social science, and public health. Until recently, bioethics has been dominated by Americans. However, in recognition that bioethics is becoming increasingly international, a third of the contributors come from outside the United States. Equally importantly, the authors represent a diversity of opinions and