When Altruism Isn’t Enough When Altruism Isn’t Enough The Case for Compensating Kidney Donors Edited by Sally Satel, MD The AEI Press Publisher for the American Enterprise Institute WASHINGTON, D.C. Distributed to the Trade by National Book Network, 15200 NBN Way, Blue Ridge Summit, PA 17214. To order call toll free 1-800-462-6420 or 1-717-794-3800. For all other inquiries please contact the AEI Press, 1150 Seventeenth Street, N.W., Washington, D.C. 20036 or call 1-800-862-5801. Library of Congress Cataloging-in-Publication Data When altruism isn’t enough : the case for compensating kidney donors / edited by Sally Satel. p. ; cm. Includes bibliographical references. ISBN-13: 978-0-8447-4266-3 ISBN-10: 0-8447-4266-X 1. Kidneys—Transplantation—Economic aspects. I. Satel, Sally L. [DNLM: 1. Kidney Transplantation—economics. 2. Kidney Transplantation— ethics. 3. Tissue Donors—ethics. WJ 368 W567 2008] RD575.W54 2008 617.4'610592—dc22 2008045715 12 11 10 09 08 1 2 3 4 5 © 2008 by the American Enterprise Institute for Public Policy Research, Washington, D.C. All rights reserved. No part of this publication may be used or reproduced in any manner whatsoever without permission in writing from the American Enterprise Institute except in the case of brief quotations embodied in news articles, critical articles, or reviews. The views expressed in the publications of the American Enterprise Institute are those of the authors and do not necessarily reflect the views of the staff, advisory panels, officers, or trustees of AEI. Printed in the United States of America To Virginia and Steve Postrel Contents LIST OF ILLUSTRATIONS xi ACKNOWLEDGMENTS xiii INTRODUCTION, Sally Satel 1 Death and Suffering Mount 2 Altruism Isn’t Enough 3 The Advantages of Living Donors 4 Compensation for Living Kidney Donors 6 Calling on Congress 8 1. RISKS OF KIDNEY TRANSPLANTATION TO A LIVING DONOR, Arthur J. Matas 10 Surgical and Perioperative Risks 12 Long-Term Outcome 13 Conclusion 17 2. THE COST-EFFECTIVENESS OF RENAL TRANSPLANTATION, Elbert S. Huang, Nidhi Thakur, and David O. Meltzer 19 Economic Studies of Renal Replacement Therapy 20 Gathering the Data 23 The Cost-Effectiveness of Transplantation versus No Treatment 24 Cost-Effectiveness of Transplantation versus Hemodialysis 25 The Cost and Benefits of Kidney Transplantation and the Value of a Kidney 30 Conclusion 31 vii viii WHEN ALTRUISM ISN’T ENOUGH 3. OPERATIONAL ORGANIZATION OF A SYSTEM FOR COMPENSATED LIVING ORGAN PROVIDERS, David C. Cronin II and Julio J. Elías 34 Basic Framework for a Compensation System 36 Process of Compensated-Provider Evaluation, Allocation, and Follow-Up 40 Models of Financial Compensation in a Market System 44 Conclusion 48 4. DONOR COMPENSATION WITHOUT EXPLOITATION, James Stacey Taylor and Mary C. Simmerling 50 Will a Legal Market Lead to a Black Market? 52 Objections to Donor Compensation 55 Individuals Will Be Coerced into Donating Organs 56 Donors Will Not Give Informed Consent 58 Individuals Will Misrepresent Their Eligibility to Donate 58 The Poor Will Supply the Rich 58 Donors Will Be Worse Off Financially 59 The Quality of Medical Conditions Will Be Unreliable 60 Fewer Organs for Transplantation Will Be Secured 60 Conclusion 61 5. CONCERNS ABOUT HUMAN DIGNITY AND COMMODIFICATION, Sally Satel 63 Dying for Dignity 64 Does Money Taint? 68 Romanticizing Altruism 72 Does Donor Compensation “Vitiate the Gift”? 74 Conclusion 77 6. ALTRUISM AND VALUABLE CONSIDERATION IN ORGAN TRANSPLANTATION, Richard A. Epstein 79 Our Uneasy Embrace of Altruism 81 Regulated and Unregulated Markets 85 Measuring the Benefit of a New Kidney 88 Crowding Out 92 Conclusion 95 CONTENTS ix 7. CROWDING OUT, CROWDING IN, AND FINANCIAL INCENTIVES FOR ORGAN PROCUREMENT, Benjamin E. Hippen and Sally Satel 96 Blood Procurement: Richard Titmuss’s Gift Relationship 96 Other Examples of Crowding Out 104 Relevance of Crowding-Out Examples to Compensation of Kidney Donors 106 Impact on Procurement of Deceased-Donor Organs 108 Conclusion 110 8. RETHINKING FEDERAL ORGAN TRANSPLANTATION POLICY: INCENTIVES BEST IMPLEMENTED BY STATE GOVERNMENTS, Michele Goodwin 111 Origins of American Organ Transplantation Policy 112 Federalism and Organ Transplantation 113 Transplantation after NOTA 115 A Pragmatic Return to the States 116 Model Waiver Language for NOTA 118 CONCLUSION, Sally Satel 122 The Politics of Transplant Policy Reform 124 APPENDIX A: ORGAN TRANSPLANTATION IN THE UNITED STATES: A BRIEF LEGISLATIVE HISTORY, Chad A. Thompson 131 Major Laws, Passed and Pending 132 1968 Uniform Anatomical Gift Act 132 1972 Social Security Amendments 133 1984 National Organ Transplant Act 133 1986 Omnibus Budget Reconciliation Act 136 1987 Uniform Anatomical Gift Act 137 1991 Patient Self-Determination Act 138 1999 Organ Donor Leave Act 138 2004 Organ Donation and Recovery Improvement Act 138 2006 Uniform Anatomical Gift Act 139 2007 Charlie W. Norwood Living Organ Donation Act 139 2007 Living Donor Job Security Act 140 2008 The Stephanie Tubbs-Jones Gift of Life Medal Act 140 Other Efforts by the States 140 x WHEN ALTRUISM ISN’T ENOUGH Failed Federal Proposals 141 Crane Bill 141 Greenwood Bills 141 Gift of Life Congressional Medal Act 142 Living Organ Donation Incentives Act 142 Gift of Life Tax Credit Act 142 Help Organ Procurement Expand Act 142 Living Organ Donor Tax Credit Act 143 Congressional Hearings 143 Putting Patients First: Increasing Organ Supply for Transplantation 144 Assessing Initiatives to Increase Organ Donations 146 APPENDIX B: EVOLUTION OF AN IDEA, Sally Satel 149 APPENDIX C: PUBLIC ATTITUDES, Sally Satel 154 Incentives as Policy 154 Incentives and Personal Decision-Making 155 APPENDIX D: RELIGIOUS CONSIDERATIONS, Sally Satel 158 Judaism 158 Islam 159 Catholicism 161 NOTES 163 INDEX 217 ABOUT THE AUTHORS 227 List of Illustrations FIGURE 3-1 Basic Framework for Compensated-Provider Programs 37 TABLES 2-1 Cost and Effectiveness Results Comparing Different Forms of Renal Replacement Therapy to No Treatment 26 2-2 Incremental Cost-Effectiveness Ratios for Studies Comparing Different Forms of Renal Replacement Therapy to No Treatment 28 2-3 Studies Comparing Renal Transplantation and Hemodialysis 30 xi Acknowledgments As with all books, particularly those with multiple authors, many people have contributed their time and ideas to this publication; we are grateful to all of them. The contributors to this volume have put countless hours into wrestling with these complex questions, and have benefited from the advice of many other fine scholars. In early 2007, Sally Satel of the American Enterprise Institute approached Richard Epstein of the University of Chicago Law School about the feasibil- ity of holding a conference at the University of Chicago, cosponsored by their respective institutions, to explore the many questions related to com- pensating organ donors. At that conference, which was held in July 2007, the contributors to this volume presented early drafts of the papers that are con- tained within this volume. They received valuable comments and criticism both from their fellow authors and from others in Chicago who were active in the issues surrounding organ transplantation. The contributors to When Altruism Isn’t Enough wish to acknowledge all those who helped with the book in numerous ways. The success of the orig- inal conference at the University of Chicago stemmed in large part from the organizational skills of Marjorie Holme, the coordinator of the law and economics program, and the editing of the papers produced by it was under- taken by Sally Satel, Samuel Thernstrom, and Lisa Ferraro Parmelee at the American Enterprise Institute. For editorial assistance, the authors wish to thank Tal Manor, Mary Knatterud, and Stephanie Daily. For research assistance we are most grateful to Jonathan Stricks and superb AEI interns Adam Hepworth, Emily Sands, and Michelle Sikes. Others who provided invaluable research support and editorial assistance were Grisel Gruiz, Christopher Levenick, Samuel Gregg, xiii xiv WHEN ALTRUISM ISN’T ENOUGH Kyle Vander Mulen, Paul Eggers, Joel Newman, Guiliano Testa, and Paul Kimmel. Richard Epstein wishes to thank David Strandness, Stanford Law School, Class of 2007, Paul Laskow, New York University, Class of 2009, and Michael Schachter, New York University Law School, Class of 2008 for their excellent research assistance. The chapters also benefited greatly from critical reading by Mark Cherry, J. Michael Millis, Michael Novak, Robert Sade, and James Warren, and discussion with Joseph Antos, Robert Helms, and Alex Pollock. For generous institutional support, deep thanks go to Dean Saul Levmore at the University of Chicago Law School, Dean Deborah Powell at the University of Minnesota Medical School, and Dean Guy Charles at the University of Minnesota Law School. The National Institute of Aging provided a Career Development Award (K23-AG021963) to Elbert S. Huang, which was greatly appreciated. Sally Satel gratefully acknowledges the support of Howard Palefsky, Victoria Palefsky, and Rose Marshall for this project. Introduction Sally Satel In June of 2007, a Dutch TV station announced an upcoming real-life program featuring Lisa, a thirty-seven-year-old woman with an inoperable brain tumor. During the show, Lisa would select which one of three needy contestant-patients would receive one of her kidneys after she died. Though only Lisa would pick the lucky winner, viewers could express their prefer- ence by voting over the Internet. News of The Big Donor Show provoked an uproar. “It’s a crazy idea,” said Joop Atsma, a member of the ruling Dutch Christian Democratic Party, which tried to prevent it from being broadcast.1 But the show went on. It turned out to be a brilliant hoax. Toward the end of the program, as Lisa was about to announce her choice, the producer interrupted and revealed to the audience that she was really an actress, not a cancer patient looking for a worthy organ recipient. Lisa and the three “contestants”—all real people in need of kidney transplants and aware of the subterfuge—were part of an enactment to dramatize the desperate shortage of transplantable organs.