In direct response to indefinite delays on the national transplantation waitlists and an inadequate supply of organs, a growing number of terminally ill Americans are turning to international underground markets and coordinators or brokers for organs. Chinese inmates on death row and the economically disadvantaged in India and Brazil are the often compromised co-participants in the private negotiation process, which occurs outside of the legal process or in the shadows of the law. These individuals supply kidneys and other organs for Americans and other Westerners willing to shop and pay in the private process. This book contends that exclusive reliance on the present altruistic tissue and organ procurement processes in the United States is not only rife with problems, but also improvident. The author explores how the altruistic approach leads to a “black market” of organs being harvested from Third World individuals as well as compelled donations from children and incompetent persons.
Michele Goodwin, B.A., J.D., LL.M., is an Associate Professor of Law and Wicklander Fellow at DePaul University College of Law. She is the Director of the Health Law Institute and the Center for the Study of Race and Bioethics. In 2002 she was a visiting scholar at Berkeley School of Law in the Center for the Study of Law and Society. Her primary research interests are tort theory, property relationships in the body, bioethics, and biotechnology. Prior to joining DePaul, she was a postdoctoral fellow at Yale University, conducting research on the antebellum politics of sex and law. Her op-ed commentaries have appeared in the Los Angeles Times, Houston Chronicle, and Chicago Sun Times.
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THE SUPPLY AND DEMAND OF BODY PARTS
Depaul University College of Law
CAMBRIDGE UNIVERSITY PRESS
Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, São Paulo
Cambridge University Press
40 West 20th Street, New York, NY 10011-4211, USA
Information on this title: www.cambridge.org/9780521852807
© Michele Goodwin 2006
This publication is in copyright. Subject to statutory exception
and to the provisions of relevant collective licensing agreements,
no reproduction of any part may take place without
the written permission of Cambridge University Press.
First published 2006
Printed in the United States of America
A catalog record for this publication is available from the British Library.
Library of Congress Cataloging in Publication Data
Black markets : the supply and demand of body parts / Michele Goodwin.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-521-85280-7 (hardback)
ISBN-10: 0-521-85280-3 (hardback)
ISBN-13: 978-0-521-61799-4 (pbk.)
ISBN-10: 0-521-61799-5 (pbk.)
1. Transplantation of organs, tissues, etc. – Corrupt practices. 2. Body, Human.
3. Homografts – Moral and ethical aspects. 4. Medical ethics.
[DNLM: 1. Tissue and Organ Procurement – methods. 2. Altruism. 3. Coercion.
4. Ethics. 5. Fraud. 6. Informed Consent. 7. Tissue Donors – supply & distribution.
8. Tissue and Organ Procurement – legislation & jurisprudence. WO 690 G657b 2006]
362.19′79500688 – dc22 2005037985
ISBN-13 978-0-521-85280-7 hardback
ISBN-10 0-521-85280-3 hardback
ISBN-13 978-0-521-61799-4 paperback
ISBN-10 0-521-61799-5 paperback
Cambridge University Press has no responsibility for
the persistence or accuracy of URLs for external or
third-party Internet Web sites referred to in this publication
and does not guarantee that any content on such
Web sites is, or will remain, accurate or appropriate.
For Louise, Nina, Selena, and Theresa
“Organ transactions today are a blend of altruism and commerce; of science, magic, and sorcery; of voluntarism and coercion; of gift, barter, and theft.”1
|A. A Tale of Two Cities||1|
|B. Black Markets: Altruism’s Limits||6|
|1. The Black Market||10|
|2. Exploitation of Living Donors||12|
|3. Compelled Organ and Tissue Donation from Children||13|
|4. Bias and Fraud: Who Gets Priority Status?||14|
|5. Presumed Consent: An Underground Process||16|
|6. Tissue Sales and Donor Betrayal||18|
|C. Reform: An Alternative Vision||20|
|D. Research Framework: Laws and Status||23|
|PART ONE: UNDERSTANDING THE STRAIN ON ALTRUISM|
|2||Institutional Supply, Demand, and Legitimacy||27|
|A. Medical Trust and Government-Sponsored Medicine||28|
|B. Institutional Competency||34|
|Institutional Supply and Demand||36|
|C. Competency and Altruism: A Statistical Overview||40|
|Racial Disparities, Distributive Justice, and Waitlists||42|
|a. Kidney Waitlists||44|
|b. Liver Waitlists||45|
|c. Heart Waitlists||46|
|D. Confidence and Donation||47|
|3||Nuances, Judicial Authority, and the Legal Limits of Altruism||57|
|A. The Language of Altruism||58|
|B. Obsessive Altruism – It’s not Really Altruism at All or Is It?||61|
|McFall ⅴ. Shimp||63|
|Curran ⅴ. Bosze||66|
|Strunk ⅴ. Strunk||73|
|C. Reproductive Altruism||77|
|4||Getting the Organ You Want||85|
|A. Organ Referral: Getting Onto the List||86|
|Profit in Dialysis||89|
|Green Screening and Social Valuing||90|
|The God Squad||95|
|B. Distributive Justice and the Waiting List Game||96|
|Matching and Politics||98|
|1. Blood Distribution Grouping||102|
|2. Human Leukocyte Antigen Disparity||102|
|3. Higher Crossmatch||104|
|4. Low Donations among Blacks||105|
|PART TWO: LEGAL FRAMEWORKS AND ALTERNATIVES|
|5||The Uniform Anatomical Gift Act||109|
|A. 1968 UAGA||110|
|B. The 1987 UAGA: Required Request and Presumed Consent||114|
|6||Presumed Consent: The Unsuspecting Donor||117|
|A. Presumed Consent: Origins and Obstacles||119|
|What Does Consent Have to Do with It?||120|
|Too Much to Not Ask For...||123|
|B. Can Presumed Consent Work for Organs?||125|
|C. Compulsory Donation and a Duty to Rescue: Why Social Contract Theory Doesn’t Apply||133|
|A Few Problems||134|
|Autonomy and State Interference||142|
|7||Commoditization: Incentives for Cadaveric Organ Harvesting||149|
|A. Bad Blood||152|
|C. Subjective Ethics||160|
|D. Life, Death, and Insurance||162|
|E. System Components and Government Power||163|
|8||Black Markets: The Supply of Body Parts||169|
|A. Taking from the Dead: Robbing Black Cemeteries||171|
|B. Public and Private Transactions in Tissue Procurement||175|
|C. The Private and the Public: A New Right to Choose in Sperm and Ova Sales||179|
|D. Black Markets and Organs||184|
|The Tale of an Organ||185|
|Buying an Organ||187|
|PART THREE: CRITIQUING THE SLAVERY AND BLACK BODY MARKET COMPARISON|
|9||Critiquing the Slavery and Black Body Market Comparison||193|
|Black Bodies and Property||194|
|1. Saving Lives||198|
|3. Voluntary Participation||201|
Chinese woman advertising her organs for sale. Chinese woman Liao Xiuyan begs with a sign reading “Sell my organs to save daughter” in Guangdong Province, China. Liao, 42, said that her 17-year-old daughter is suffering from leukemia and waits for marrow transplantation. The surgery, which costs almost RMB 500,000 (USD 61,652), is high beyond what Liao and her husband can afford. (Photo by China Photos/Getty Images)
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Organ poachers and distributors have developed international networks and some are more sophisticated than others. In October of 2005, police in Pakistan arrested a group of organ robbers from Afghanistan shortly after the devastating earthquake that killed more than 57,000 people and left more than half a million people homeless in that region.1 The four men were caught carrying a cooler that contained 15 organs from victims who did not survive the devastation.2 The victims' corpses were left in the rubble, emptied of the precious kidneys.
Americans live with the understanding that thousands will die each year because too few organs are donated in our present procurement system. Our demand for organs is soaring and the supply is very low. How we resolve this conundrum will reflect our values for autonomy, human dignity, and life-saving efforts.
The interrupted journeys of a few individuals who bravely fought (and later lost) their battles against treatable diseases helped to inform this book. Quite a few had been dropped from transplant waitlists or were misinformed about the benefits of transplantation versus dialysis. In particular, the willingness of some of these individuals to pay for organs to save their lives was a profound statement, particularly because they were African American.3 They presented an interesting juxtaposition to the race-based rationale for a ban on organ selling. For years, commentators based their opposition to markets in organs on the theory that organ selling resembled slavery. They predict that organ markets would hurt African Americans. Some scholars suggest that an open market in organs could result in familial homicides. They also argue that financial incentives could lead to economic irresponsibility (for the sellers). Some argue against financial incentives in organ procurement, opining that all financial transactions with the human body are coercive and could destroy the integrity of African American communities. Such fears have, in my opinion, limited the discourse and inquiry about how to increase organ supply. We may not know the impact on African Americans as participants in a market system, but statistics reveal how they have been disproportionately “hurt” by the current “altruistic” transplantation model.
In writing this book, I carried a number of stories with me. Some of these stories were more than mere interviews with patients about their experiences on dialysis; they were an oral history of people who influenced the lives of others and whose absences now reveal voids in their communities. Other stories were gleaned from legal cases, briefs filed by attorneys, and investigative reports. The personal experiences of dialysis patients interviewed as part of this project – Jerry, Tim, D. J., Emogene, and others – shed light on the racial dynamics of dialysis treatment, as well as organ transplantation and rationing. Their personal accounts helped to humanize an otherwise scholarly pursuit.
I found other stories equally interesting. These were the “after death” stories. Dead bodies do not speak; but their relatives can be quite expressive. Cadaver stories gripped my imagination, and led me on an interesting journey that included the review of hundreds of cases involving the mishandling, misappropriation, and unlawful burial of cadavers. In particular, the claims made by individuals who took legal action against companies for mishandling, moving, and otherwise disturbing their dead relatives presented unsettled nuances in the law as to property ownership in human bodies. The early legal history and analysis of body part appropriation and misappropriation seemed a logical extension of study and research on questions of institutional change in organ transplantation. Addressing system tolerance and institutional choice in procurement systems inevitably turns us toward the limits of our past engagement with body parts, how we value the deceased, and the level of our tolerance for institutional change.
Two civil cases intrigued me. The first case, Moore v. Regents,4 dealt with the question of conversion and more specifically whether Mr. Moore could sue his doctors for what amounted to his doctors misappropriating his cell line. Moore’s doctors made millions of dollars based on patents they developed from the nonconsensual use of Moore’s genetic material. The California Supreme Court answered in the negative; they argued that an individual has no ownership or property interest in his or her body! The second case, Carney v. Knollwood Cemetery,5 was more obscure. This was a Cleveland, Ohio, case that involved the mishandling of a deceased person. In this case, the Knollwood Cemetery instructed its employees to destroy a buried vault, including the casket within it, and to toss the remains in a trash heap behind the cemetery office to make room for a grave. Later, visitors reported seeing bones, a skull, and other body parts in the trash pile. News cameras captured footage of the macabre scene. In Carney, the court held that the plaintiffs (the sister and grandchildren of the late Mrs. Carney) had a viable cause of action against the cemetery for causing them emotional distress.
Yet another story intrigued me. This was slightly more personal, as it took me back to my childhood days visiting relatives in the South. My great-grandfather, a farmer wedded to southern soil, was nearly 100 years old at death. He was committed to the South and never left it except to bury his children in the North. As a little girl, I listened attentively to his fantastic stories, which as it turns out, often involved two subjects, the land and the dead. Within those two domains my cousins and I learned about harvests, moons, and tides. We also learned about “the value” of things buried: people and money. However, one story came back to me while I was in law school. It was a story he shared often about how Black graves were pillaged for body parts that were used for research and medical school anatomy classes. During summers in Mississippi, those stories seemed like interesting folklore. Only later, I researched his claims, and as shared in Chapter 8, you will see that his tales were true. The supply and demand challenge for body parts is not a new question.
It became clear to me that the law was not settled on body ownership questions. From state to state (and internationally), questions about property ownership in bodies and body parts were answered differently by courts. In some states, relatives were recognized to have “quasi-property right interests” in their deceased relatives’ bodies. Therefore, relatives could determine organ donation, burial location, disposition of the body (cremation, burial, whole body donation), and even instigate litigation for violation of their quasi-property rights. On the other hand, in even the most egregious cases of body parts misappropriation, including a hospital’s failure to return a prematurely born baby for burial,6 a two-headed fetus kept in a bottle on display at a circus,7 or nonconsensual removal of corneas for transplantation,8 the notion of property interests in human bodies was flat out rejected by some courts.
For me, the question of body ownership was relevant to the issue of organ transplantation. Body ownership was one way of looking at rights connected with the power to donate. Who has the power to donate? An individual may choose to donate her organs, but the state cannot force her to do so. The next of kin also possess a recognized legal interest in their deceased relatives’ bodies. They too can decide whether to donate a dead relative’s organs. But from where do their rights spring? The recognition of “quasi-property” right interests in bodies, specifically for purposes of body disposal dates back centuries in English common law. English courts initially applied this legal theory as an affirmative duty on relatives to properly bury and dispose of their kin. Early U.S. cases involved nuisance actions against relatives who improperly interred their relatives in stoves, fireplaces, and furnaces.9 However, “quasi-property rights” theory is inconsistently recognized and applied by courts. Some U.S. courts refer to it as a “legal fiction.” Indeed, as with all rights, there are also limits. In this book, I parse out these questions of ownership and how we might address an overburdened, underserving, organ procurement system.
My journey was aided by many. For more than a decade, John Paris has been a great mentor. He and Dean Hashimoto provided guidance and encouragement during the conceptual periods of this project, long before it was ever imagined as a book. John is an outstanding bioethicist and his willingness to respectfully challenge, inquire, and probe complex, nuanced medico-legal problems is inspiring. His spirited yet thoughtful engagement with sensitive issues taught me early on to courageously engage on bioethical terrain.
I am also most deeply indebted to Dorothy Roberts and Dorothy Brown, both of whom have been incredibly generous with their time and guidance. I am fortunate to have both as mentors. Marc Galanter's contributions to this project are also appreciated, particularly his critiques in its early stages when he encouraged me to follow through with my then-developing theory on market systems and how they could relate to organ procurement. Research assistants are invaluable to all academic endeavors. This book is no exception. For this project, Tamara Hobbs provided outstanding research assistance and I am most grateful. She along with Rakeena Payne, Cora Smith, and Michael Bankhead helped me to reach the Black community of and throughout Chicago for comment on dialysis, organ transplants, and community health in general. Pamela Koszut provided invaluable research support for this project. Erin Crow, thank you for being an extra set of eyes and performing cite checking. Glen Weissenberger provided the research funding to help bring the project to its next step. Special thanks to John Berger, my editor at Cambridge University Press and his great team. Any and all flaws in this text are my own.
Andreas Philippopoulos-Mihalopoulos, thank you for allowing me to present a chapter of this book as a keynote lecture at Westminster College of Law. I am also very grateful to Patricia Warhane and the Institute for Business Ethics. Receiving the Wicklander Fellowship was a great honor and I am most indebted. I owe a debt of gratitude to the Institute for Law and Society at the University of California at Berkeley. The faculty and staff helped my research stay to be a rich experience. Blake Morant is ever a great supporter. I thank him, the Frances Lewis Law Center, and his colleagues at Washington and Lee Law School, for inviting me to present a chapter of this book as part of their 2004–2005 lecture series. Versions of various chapters were presented at MAPOCC meetings; thank you all in the Mid-Atlantic for comments and criticisms. I would also like to thank Dr. Sandra Jackson and Dr. Fassil Demissie for inviting me to share a chapter of this book at the Center for Black Diaspora at DePaul University. I would like to thank Guido Calabresi for his encouragement during my drafting process.
Finally, there are the family members who make our journeys through life meaningful. I must express my deepest appreciation to Nancy for providing an underground railroad of sorts. Memories of those years will always bring gratitude and warmth to my heart. In the end, this was not possible without you. Ann, Vata, Julie, and Todd, thank you for being there. I owe much to Ingrid Hillinger and Margit Livingston. To my godfather, Daniel Kunene, thank you for inspiring such beautiful poetry and for supporting my endeavors. Lastly, my daughter and son, Sage and Brook, and husband, Greg, provide year-round inspiration and help to place life in perspective. Journeys are only as valuable as the homes to which we return.
– Michele Goodwin