American Bioethics: Crossing Human Rights and Health Law Boundaries George J. Annas OXFORD UNIVERSITY PRESS American Bioethics ALSO BY THE AUTHOR The Rights of Patients Judging Medicine Standard of Care: The Law of American Bioethics Some Choice: Law, Medicine, and the Market Coauthored Informed Consent to Human Experimentation: The Subject’s Dilemma (with Leonard Glantz and Barbara Katz) The Rights of Doctors, Nurses and Allied Health Professionals (with Leonard Glantz and Barbara Katz) Reproductive Genetics and the Law (with Sherman Elias) American Health Law (with Sylvia Law, Rand Rosenblatt, and Ken Wing) Coedited Genetics and the Law Genetics and the Law II Genetics and the Law III (with Aubrey Milunsky) The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (with Michael Grodin) Gene Mapping: Using Law and Ethics as Guides (with Sherman Elias) Health and Human Rights: A Reader (with Jonathan Mann, Sofia Gruskin, and Michael Grodin) George J. Annas ○○○○○○○○○○○○○○○○○○○ AMERICAN BIOETHICS ○○○○○○○○○○○○○○○○○○○ Crossing Human Rights and Health Law Boundaries 1 2005 3 Oxford New York Auckland Bangkok Buenos Aires Cape Town Chennai Dar es Salaam Delhi Hong Kong Istanbul Karachi Kolkata Kuala Lumpur Madrid Melbourne Mexico City Mumbai Nairobi São Paulo Shanghai Taipei Tokyo Toronto Copyright © 2005 by George J. Annas Exerpt from “Little Gidding” in FOUR QUARTETS, © 1942 by T. S. Eliot and renewed 1970 by Esme Valerie Eliot, reprinted by permission of Harcourt, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 www.oup.com Oxford is a registered trademark of Oxford University Press All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Oxford University Press. Library of Congress Cataloging-in-Publication Data Annas, George J. American bioethics : crossing human rights and health law boundaries / George J. Annas. p. cm. Includes bibliographical references and index. ISBN 0-19-516949-2 1. Human rights—Moral and ethical aspects. 2. Medical laws and legislation—Moral and ethical aspects. 3. Medical laws and legislation—Moral and ethical aspects—United States. 4. Bioethics—United States. I. Title. K3240.A56 2004 174'.957'0973—dc22 2004045576 987654321 Printed in the United States of America on acid-free paper To Katie and David and their generation of human rights and health advocates This page intentionally left blank Acknowledgments American Bioethics continues my exploration of the relationships between bioethics and law begun in Standard of Care: The Law of American Bioeth- ics and continued in Some Choice: Law, Medicine, and the Market. As with these earlier works, I benefited greatly from conversations, debates, com- ments, and criticisms of my colleagues in the Department of Health Law, Bioethics and Human Rights at the Boston University School of Public Health, most especially Leonard H. Glantz, Michael A. Grodin, Wendy K. Mariner, and Winnie Roche. We have been together for almost two de- cades, during which time we have together explored and crossed tradi- tional academic boundaries, including those combined in our Department’s new name and in this book. It has been terrific, and our Dean, Robert Meenan, has been a strong supporter of our work. I also greatly appreciate the consistent support of Jeffrey House of Oxford University Press for all three books. Special thanks are due to Michael Grodin (again), with whom I founded Global Lawyers and Physicians, and with whom I have taught a course on “Human Rights and Health” for each of the past six years. Many of the ideas involving the new field of health and human rights grew out of viii Acknowledgments this course, as well as our work with others in the field, especially the late Jonathan Mann, and our colleagues at the Harvard School of Public Health, Sofia Gruskin and Stephen Marks. An earlier version of Chapter 4 was coauthored with my colleagues Lori Andrews and Rosario Isasi, both of whom I continue to work with on issues of global governance of genetic technologies. I also get many ideas from my wife, Mary Annas, and our children, Katie and David, who give me some measure of confidence that their generation might not repeat many of the mistakes of mine. I am happy to dedicate this book to them. The exceptional staff of the Department of Health Law, Bioethics and Human Rights has always made manuscript preparation much smoother than it should be, and Emily Bajcsi was espe- cially instrumental in the preparation of this book. Earlier versions of most of the chapters in American Bioethics, Chapter 2 and Chapters 5 through 12, first appeared in the New England Journal of Medicine, and most of these were expertly edited by Marcia Angell. An earlier version of Chapter 3 appeared in the Emory Law Review, Chapter 4 in the American Journal of Law & Medicine (coauthored by Lori Andrews and Rosario Isasi), and Chapter 1 in Jonathan Moreno’s In the Wake of Terror. Contents Introduction xiii I BIOETHICS AND HUMAN RIGHTS 1. Bioethics and Bioterrorism 3 2. Human Rights and Health 19 3. The Man on the Moon 27 4. The Endangered Human 43 5. The Right to Health 59 6. Capital Punishment 69 II BIOETHICS AND HEALTH LAW 7. Conjoined Twins 81 8. Patient Rights 95 9. White Coat Police 105 10. Partial Birth Abortion 121 11. The Shadowlands 135 12. Waste and Longing 149 x Contents Concluding Remarks: Bioethics, Health Law, and Human Rights Boundary Crossings 159 Appendix A: Universal Declaration of Human Rights 167 Appendix B: International Covenant on Civil and Political Rights 175 Appendix C: International Covenant on Economic, Social, and Cultural Rights 195 Appendix D: The Nuremberg Code 205 Notes 207 Index 237 “The voluntary consent of the human subject is absolutely essential.” —Nuremberg Code, 1947 “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, includ- ing food, clothing, housing and medical care and necessary social services. Motherhood and childhood are entitled to special care and assistance.” —Universal Declaration of Human Rights, 1948 This page intentionally left blank Introduction o you’re a bioethnacist,” began Stephen Colbert as he opened his in- terview with medical historian David Rothman on Jon Stewart’s The SDaily Show in 2003, the 50th anniversary of the discovery of the struc- ture of DNA. Rothman was being questioned, together with James Watson, about whether there is a “stupidity gene.” Rothman insisted, “no, no, an ethicist,” to which Colbert responded curtly, “a bio . one of those things.” Playing bioethics for laughs on Comedy Central is an indication both that bio- ethics has made it in America, and that it is in some danger of becoming a joke. On the serious side, President George W. Bush devoted his first major televised address to the nation to a bioethical issue (embryonic stem cell re- search) and his appointment of a President’s Council on Bioethics with the broad charge to “consider all of the medical and ethical ramifications of bio- medical innovation.” On the more foolish side, Congress passed a bill (for the third time) criminalizing a medical procedure, so-called partial birth abortion, and the Florida legislature, with the endorsement of Governor Jeb Bush, passed a law requiring a feeding tube to be reinserted into a woman in a persistent vegetative state. American bioethicists have successfully promoted informed choice in the doctor–patient relationship, and were instrumental in xiii xiv Introduction promulgating federal regulations to protect research subjects; but ethics com- mittees have had only limited success, and bioethicists have had little to say either about access to health care by tens of millions of uninsured Ameri- cans, or even about patient safety and medical malpractice. These examples tell us a lot about American bioethics. First, bioeth- ics has become a widely recognized field, complete with its own experts whose opinions matter. Presidents Carter, Reagan, Clinton, and Bush all felt it important to name their own “bioethicists” to national committees and commissions. Second, as these examples suggest, American bioethics is about much more than “ethics,” it is about law and politics. That is why, more than a decade ago, I subtitled my Standard of Care “The Law of American Bioethics,” noting that “American law, not philosophy or medi- cine, is primarily responsible for the agenda, development and current state of American bioethics.” It was true then and remains true today. Ameri- can bioethics is more pragmatic than principled. And to the extent that American bioethics has principles, they are mostly drawn from American law, including liberty (autonomy) and justice. Autonomy has a dark side, and in the context of America’s market ideology can make choice seem like a legitimate end in itself regardless of the poverty of the available op- tions, a theme I explored in Some Choice: Law, Medicine, and the Market. In this book I ask whether bioethics can regain its aspirational core and redeem itself from being just another legal or marketing specialty in America. The perhaps surprising answer comes not from within bioethics, but from outside—and this time from beyond America itself, from the interna- tional human rights movement. There is certainly such a thing as interna- tional human rights law, but as set forth in the Universal Declaration of Human Rights, and even in two major subsequent treaties, it remains fair to charac- terize much of international human rights as aspirational in character. The most important development in bioethics in the past decade has been its movement toward globalization, and this will ultimately, I believe, require the fields of bioethics and human rights to work together.