Jonathan Baron A GAINST AGAINST AGAINST BIO ET HICS Baron “Ignore the title. Baron doesn’t want to get rid of bioethics, but to show us how we can do it better. His acute diagnosis of the pervasive errors of deontological approaches to bioethics deserves a wide readership.” Peter Singer, Ira W. DeCamp Professor of Bioethics, University Center for Human Values, Princeton University “Against Bioethics is a well-written, lucid, nontechnical exposition of how utilitarianism and its technical cousin, decision analysis, can be applied to a variety of bioethical problems including assisted suicide, informed consent, and the justifications for ‘going against nature’ (a particularly intriguing chapter on genetic engineering and stem cell research). For the most part, the book avoids the computational complexities that have limited the audience for a decision-analytic view of these problems. Instead, it focuses on the philosophical principles at stake and works out their implications for action. Its critique of specific solutions recommended by applied bioethicists deserves serious consideration.” Arthur Elstein, Professor Emeritus of Medical Education, University of Illinois at Chicago; past president, Society for Medical Decision Making “In this provocative book, Jonathan Baron calls on bioethicists to base their ethical judgments on explicit, quantifiable, utilitarian principles. Aware of the resistance to this approach, he demonstrates its strengths in a broad overview of a range of bioethical debates. Will assisted suicide laws for terminally ill patients lead to a slippery slope? Will genetically modified plants cause harm to the environment? Will new reproductive technologies cheapen the meaning of parenthood? Baron’s utilitarian approach, based as it is on decision analysis, offers a powerful tool to inform these decisions.” Peter A. Ubel, Director, Center for Behavioral and Decision Sciences in Medicine, University of Michigan “Baron’s diagnosis is correct: much is lacking in how bioethics has been translated into policy and practice. His proposed therapy, greater reliance on utilitarianism and decision theory, may not be a complete answer, but it moves the field in the right direction. Baron’s critique, and his proposed solutions, deserve a wide readership.” Barbara A. Koenig, Professor of Medicine, Mayo College of Medicine The MIT Press Massachusetts Institute of Technology Cambridge, Massachusetts 02142 http://mitpress.mit.edu Jonathan Baron is Professor of Psychology at the University of Pennsylvania. He is the author of Morality and Rational Choice, Thinking and Deciding, Judgment Misguided: Intuition and Error in Public Decision Making , and other books. Basic Bioethics series Governments, health professionals, patients, research institutions, and research subjects look to bioethicists for guidance in making important decisions about med- ical treatment and research. And yet, argues Jonathan Baron in Against Bioethics, applied bioethics lacks the authority of a coherent guiding theory and is based largely on intuitive judgments. Baron proposes an alternative, arguing that bioethics could have a coherent theory based on utilitarianism and decision analysis. Utilitarianism holds that the best option is the one that does the most expected good. Decision analysis provides a way of thinking about the risks and trade-offs of specific options. Like economics, utilitarian decision analysis makes predictions of expected good in complex situations, using data when possible, and focusing human judgment on the issues relevant to consequences. With such a guiding theory, bioethics would never yield decisions that clearly go against the expected good of those involved, as some do now. Baron discusses issues in bioethics that can be illuminated by such analysis, including “enhancements” to nature in the form of genetics, drugs, and mind control; reproduc- tion; death and end-of-life issues, including advance directives, euthanasia, and organ donation; coercion and consent; conflict of interest and the reform of internal review boards; and drug research. Although Baron opposes many current practices in bioethics, he argues that by combining utilitarianism and decision analysis, bioethics can achieve its aims of providing authoritative guidance in resolving thorny medical and ethical issues. BIOETHICS/PUBLIC HEALTH Jonathan Baron ,!7IA2G2-acfjgg!:t;K;k;K;k 0-262-02596-5 Against Bioethics Basic Bioethics Glenn McGee and Arthur Caplan, editors Peter A. Ubel Pricing Life: Why Its Time for Health Care Rationing Mark G. Kuczewski and Ronald Polansky, eds., Bioethics: Ancient Themes in Con- temporary Issues Suzanne Holland, Karen Lebacqz, and Laurie Zoloth, eds., The Human Embryonic Stem Cell Debate: Science, Ethics, and Public Policy Gita Sen, Asha George, and Piroska ¨ Ostlin, eds., Engendering International Health: The Challenge of Equity Carolyn McLeod Self-Trust and Reproductive Autonomy Lenny Moss What Genes Can’t Do Jonathan D. Moreno, ed., In the Wake of Terror: Medicine and Morality in a Time of Crisis Glenn McGee, ed., Pragmatic Bioethics, 2d edition Timothy F. Murphy, Case Studies in Biomedical Research Ethics Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting and Social Policy Kenneth A. Richman, Ethics and the Metaphysics of Medicine: Reflections on Health and Beneficence David Lazer, ed., DNA and the Criminal Justice System: The Technology of Justice Harold W. Baillie and Timothy K. Casey, eds., Is Human Nature Obsolete? Genetics, Bioengineering, and the Future of the Human Condition Robert H. Blank and Janna C. Merrick, eds., End-of-Life Decision Making: A Cross- National Study Norman L. Cantor, Making Medical Decisions for the Profoundly Mentally Disabled Margrit Shildrick and Roxanne Mykitiuk, eds., Ethics of the Body: Post-Conventional Challenges Alfred I. Tauber, Patient Autonomy and the Ethics of Responsibility David H. Brendel, Healing Psychiatry: A Pragmatic Approach to Bridging the Sci- ence/Humanism Divide Jonathan Baron, Against Bioethics Against Bioethics Jonathan Baron The MIT Press Cambridge, Massachusetts London, England © 2006 Massachusetts Institute of Technology All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the publisher. MIT Press books may be purchased at special quantity discounts for business or sales promotional use. For information, please e-mail special_sales@ mitpress.mit.edu or write to Special Sales Department, The MIT Press, 55 Hayward Street, Cambridge, MA 02142–1315. This book was set in Palatino by the author. Printed on recycled paper. Printed and bound in the United States of America. Library of Congress Cataloging-in-Publication Data Baron, Jonathan Against bioethics / Jonathan Baron p. cm. — (Basic bioethics series) Includes bibliographical references and index. ISBN 0–262–02596–5 (hc. : alk. paper) 1. Medical ethics—philosophy. 2. Medical ethics—Decision making. 3. Decision making. 4. Informed consent (Law) 5. Duress (Law) I. Title. II. Series. R725.5B25 2006 174.2—dc22 2005054484 10 9 8 7 6 5 4 3 2 1 Baroncopyright 1/12/06 9:41 AM Page 1 Contents Series Foreword ix Preface xi 1 Introduction 1 1.1 What this book tries to do . . . . . . . . . . . . . . . . . . . 4 2 Bioethics vs. Utilitarianism 9 2.1 History: Nuremberg and Tuskegee . . . . . . . . . . . . . . 10 2.2 Principles of bioethics . . . . . . . . . . . . . . . . . . . . . 12 2.3 Bioethical principles vs. utilitarianism . . . . . . . . . . . . 15 2.4 Rules and flowcharts . . . . . . . . . . . . . . . . . . . . . . 20 2.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 3 Utilitarianism and Decision Analysis 25 3.1 Utilitarianism . . . . . . . . . . . . . . . . . . . . . . . . . . 25 3.2 Intuitive judgments . . . . . . . . . . . . . . . . . . . . . . . 43 3.3 Multiattribute utility theory (MAUT) . . . . . . . . . . . . . 46 3.4 Attributes and values . . . . . . . . . . . . . . . . . . . . . . 48 3.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 4 Going Against Nature 51 4.1 Enhancements: genes, drugs, and mind control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 4.2 Deficits and drugs . . . . . . . . . . . . . . . . . . . . . . . . 64 4.3 Reproduction . . . . . . . . . . . . . . . . . . . . . . . . . . 67 4.4 Extending life . . . . . . . . . . . . . . . . . . . . . . . . . . 77 vi Contents 4.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81 5 Death and the Value of Life 83 5.1 The value of life and health: QALYs . . . . . . . . . . . . . 84 5.2 Advance directives . . . . . . . . . . . . . . . . . . . . . . . 89 5.3 Euthanasia and assisted suicide . . . . . . . . . . . . . . . . 91 5.4 Organ donation and the definition of death . . . . . . . . . 95 5.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96 6 Coercion and Consent 97 6.1 The value of choice . . . . . . . . . . . . . . . . . . . . . . . 97 6.2 The flat maximum . . . . . . . . . . . . . . . . . . . . . . . . 99 6.3 Coercion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103 6.4 Research on people who cannot consent . . . . . . . . . . . 106 6.5 Why consent? . . . . . . . . . . . . . . . . . . . . . . . . . . 109 6.6 Altruism, hope, and consent . . . . . . . . . . . . . . . . . . 118 6.7 Competence to consent . . . . . . . . . . . . . . . . . . . . . 120 6.8 Responsibility and the law . . . . . . . . . . . . . . . . . . . 126 6.9 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129 7 Conflict of Interest 131 7.1 Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132 7.2 Reforming the IRB . . . . . . . . . . . . . . . . . . . . . . . 138 7.3 Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150 7.4 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154 8 Drug Research 155 8.1 Recruiting subjects for drug trials . . . . . . . . . . . . . . . 155 8.2 Placebo controls . . . . . . . . . . . . . . . . . . . . . . . . . 164 8.3 New drug approval . . . . . . . . . . . . . . . . . . . . . . . 175 8.4 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177 9 Allocation 179 9.1 Allocation heuristics and biases . . . . . . . . . . . . . . . . 180 9.2 Allocation in practice . . . . . . . . . . . . . . . . . . . . . . 188 9.3 What to do about biases . . . . . . . . . . . . . . . . . . . . 201 9.4 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203 Contents vii 10 The Bigger Picture 205 10.1 The politics of improving world health . . . . . . . . . . . . 205 10.2 Environment, animals, and future people . . . . . . . . . . 208 10.3 Waste . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210 10.4 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212 References 215 Index 233 Series Foreword We are pleased to present the nineteenth book in the series Basic Bioethics. The series presents innovative works in bioethics to a broad audience and introduces seminal scholarly manuscripts, state-of-the-art reference works, and textbooks. Such broad areas as the philosophy of medicine, advancing genetics and biotechnology, end-of-life care, health and social policy, and the empirical study of biomedical life are engaged. Glenn McGee Arthur Caplan Basic Bioethics Series Editorial Board Tod S. Chambers Susan Dorr Goold Mark Kuczewski Herman Saatkamp [...]... equality in the allocation of money and other goods If we start from equality and increase the wealth of one person at the expense of another, the gainer would gain less than the loser loses, in terms of what the money can buy On the other side, if all money were distributed equally, then money could no longer provide an incentive to work The amount of productive work would be reduced Thus, the other side... History: Nuremberg and Tuskegee The history of bioethics follows a pattern that may explain many human rules, both social and personal Some catastrophe happens, then people look for some rule that would have prevented the catastrophe if the rule had been in effect Then they implement the rule The problem is that they do not think much about whether the rule may also prevent other things that would not be... raise some of the subtle issues, and a full explication of these theories is well beyond the limited scope 8 Chapter 1 of this book But I shall at least try to show that the theory does have a foundation The rest of the book will examine illustrative issues chosen mostly because they are of current interest to me and many others In the conclusion, I try to take a somewhat broader view of the implications... disutility of the bad event were, say, four times the utility of the good event, then we would want to approve the study when the probability of the bad event is less than 25% of the probability of the good event Thus, we would just approve it if the probabilities were, respectively, 5% and 21%, or 20% and 81%, or 0.1% and 0.5% It seems arbitrary to set the risk criterion in the same place regardless of the. .. for the benefit of those affected by them In the next chapter, I begin the discussion of the basis of decision analysis The effort to make the trade-offs explicit need not always involve numbers It could simply involve bearing in mind a rule that permits them For example, “weigh the probability and magnitude of harm against the benefits.” Such a rule, although vague, would be as easy to apply as the. .. a low-protein diet The severe form of the disease caused infants to die a few weeks after birth Dr James Wilson of the University of Pennsylvania had a promising therapy for the disorder and wanted to try it The therapy involved replacing defective genes with genes that would produce the enzyme The replacement involved injecting a virus (adenovirus) that had the relevant gene The therapy was promising... about the academic side of bioethics The literature is huge, and it would take me too far afield Some contributors to this literature would agree with things that I say here; others would dispute them Many are utilitarians (although few of these are involved with decision analysis) There is no consensus The consensus arises when the bioethics literature is distilled into its final common path—that is, the. .. a coherent theory of what it is doing, and the theory has withstood empirical challenge, or modified its assumptions in response to evidence Economists cannot predict the future all that well, but they can give the best advice there is about how to make decisions under uncertainty, and they can explain at length why it is, in fact, the best advice Applied bioethics, by contrast, tends either to be suspicious... or whether the rule will prevent the next catastrophe Modern bioethics began largely with the discovery of Nazi abuses committed in the name of medical research prior to and during World War II Prisoners in concentration camps—who were imprisoned largely Bioethics vs Utilitarianism 11 because of their ethnic background or their political views—were subjected to horrendous and harmful procedures They... with other issues, such as the use of biotechnology to increase happiness The United Nations Educational, Scientific and Cultural Organization (UNESCO) has a bioethics section that coordinates the activities of member states, most of which have their own bioethics advisory committees or agencies In the United States, individual states have bioethics panels Universities run degree programs in bioethics, . Sci- ence/Humanism Divide Jonathan Baron, Against Bioethics Against Bioethics Jonathan Baron The MIT Press Cambridge, Massachusetts London, England © 2006 Massachusetts Institute of Technology All. informing Wilson of the consensus view in the field of bioethics. I do not want to dwell further on the facts of this case. That would take at least another book. Rather, I want to discuss the principles. try it. The therapy involved replacing de- fective genes with genes that would produce the enzyme. The replace- ment involved injecting a virus (adenovirus) that had the relevant gene. The therapy