Yale Journal of Health Policy, Law, and Ethics Volume 8 Issue 1 Yale Journal of Health Policy, Law, and Article 4 Ethics 2008 E Pluribus UNOS: The National Organ Transplant Act and Its Postoperative Complications Jed Adam Gross Follow this and additional works at: https://digitalcommons.law.yale.edu/yjhple Part of the Health Law and Policy Commons, and the Legal Ethics and Professional Responsibility Commons Recommended Citation Jed A. Gross, E Pluribus UNOS: The National Organ Transplant Act and Its Postoperative Complications, 8 YALE J. HEALTH POL'Y L. & ETHICS (2008). Available at: https://digitalcommons.law.yale.edu/yjhple/vol8/iss1/4 This Article is brought to you for free and open access by Yale Law School Legal Scholarship Repository. It has been accepted for inclusion in Yale Journal of Health Policy, Law, and Ethics by an authorized editor of Yale Law School Legal Scholarship Repository. For more information, please contact [email protected]. Gross: E Pluribus UNOS NOTE E Pluribus UNOS: The National Organ Transplant Act and Its Postoperative Complications Jed Adam Gross* INTRODUCTION .............................................................................................................. 147 I. SOCIAL AND TECHNICAL ENVIRONMENT ................................................................. 151 A. THE SOCIO-TECHNICAL ORGANIZATION OF ORGAN MATCHING ........................... 153 B. ENLISTING "THE PUBLIC," BUT NOT THE PUBLIC AS A WHOLE ............................. 157 C. HEARTS, MINDS, AND CORNEAS IN GEOPOLITICAL CONTEXT ............................... 160 D. BUILDING ON HOPE AND BUILT-IN DILEMMAS ...................................................... 163 E. MAKING TRAGIC CHOICES: THE DOMESTIC POLITICS AND ECONOMICS OF ORGAN A LLO C A T IO N ............................................................................................................... 170 F. G REEN LIGHTS AND RED TAPE .............................................................................. 174 1I. LEGISLATIVE RESPONSE ......................................................................................... 178 A . C ONGRESSIONAL INQUIRY ..................................................................................... 178 B . O R G A N S ................................................................................................................. 18 3 C . D O LLA R S ............................................................................................................... 18 7 * J.D., Yale Law School, 2007; M.A. (History of Science and Medicine),Yale University, 2005; B.A., University of Pennsylvania, 2002. This Note had its origins in the Beyond the Bungled Transplant Conference convened at Rutgers University on June 11 and 12, 2004, and draws on my essay Playing with Matches without Getting Burned: Public Confidence in Organ Allocation, in A DEATH RETOLD: JESICA SANTILLAN, THE BUNGLED TRANSPLANT, AND PARADOXES OF MEDICAL CITIZENSHIP 180 (Keith Wailoo et al. eds., 2006). I gratefully acknowledge the three inspired conference organizers: Julie Livingston, Peter Guamaccia, and especially Keith Wailoo for his early encouragement. Along the way were thought-provoking conversations with friends and acquaintances including Morris Cohen, Ted Marmor, Richard Cook, Nancy Scheper-Hughes, Tom Diflo, Peter Schuck, Sue Lederer, Lesley Sharp, Dan Kevles, Bettyann Kevles, Naomi Rogers, James Blumstein, Art Caplan, Paul Root Wolpe, Prakash Kumar, Greg Lampros, Alistair Kwan, and Margaret Chisholm. Finally, I would like to express my profound gratitude to Emma Llanso and the rest of the YJHPLE editorial staff for their dedication, to Sumira Ohashi for bearing with me, to Jared M. Gross for living with me, and to my parents Herman and Maryalice Gross for their unwavering love and support. Published by Yale Law School Legal Scholarship Repository, 2008 1 Yale Journal of Health Policy, Law, and Ethics, Vol. 8 [2008], Iss. 1, Art. 4 YALE JOURNAL OF HEALTH POLICY, LAW, AND ETHICS V1II: 1 (2008) D . COORDINATION ...................................................................................................... 197 E. LEGISLATIVE PROCESS (AND PRODUCT) ................................................................. 207 Ill. SUBSEQUENT D EVELOPM ENTS ............................................................................... 222 A. THE PITTSBURGH CONTROVERSY AND THE CRISIS OF PUBLIC CONFIDENCE ......... 222 B. STRUCTURAL IMPACT ............................................................................................227 C. THE REFINING SCALPEL OF LITIGATION ................................................................230 IV . CONCLUSION .......................................................................................................... 241 A . RECENT POLICY D EVELOPMENTS ..........................................................................241 B. A SSESSMENT .........................................................................................................248 C. FUTURE D IRECTIONS .............................................................................................. 251 https://digitalcommons.law.yale.edu/yjhple/vol8/iss1/4 2 Gross: E Pluribus UNOS E PLURIBUS UNOS INTRODUCTION Thanks to George Orwell's dystopian novel, the year 1984 became a cultural reference point in Cold War America. When January of that iconic year finally arrived, Apple rolled out the Macintosh personal computer with an arresting Super Bowl advertisement, assuring viewers that "1984 won't be like Nineteen Eighty-Four."' As the introduction of new technologies generated excitement and apprehension in the mid-1980s, increasingly sophisticated organ transplantation practices seemed to embody the promise and the perils of medicine's future.2 Orwell's novel remains a cultural touchstone in the twenty-first century, having outlived its immediate political context,3 and the first Macintoshes, though today considered technological dinosaurs, ushered in the era of personal computing. The National Organ Transplant Act of 1984 (NOTA) likewise left a cultural imprint that would transcend its immediate historical context. The Act's motives, its text, and even its name have largely receded from the public's consciousness, to the extent that they ever were a part of that consciousness. The human organ allocation system that it spawned, however, supplies the news and entertainment media with a steady stream of inspirational stories, suspicious incidents, and ethical conundrums.4 Amid a persistent scarcity of transplantable organs, salient aspects of organ allocation in the United States-patients waiting for transplantable organs, shocked next-of-kin being asked to consent to the donation of loved ones' organs, institutional protocols for allocating available organs, and the ban on organ purchases--continue to draw academic and public scrutiny. Policy- oriented scholars are increasingly revisiting established features of the NOTA system, especially the provision of NOTA that prohibits commerce in human organs, and proposing various modifications. 5 But before this renewed critical 1. See Ted Friedman, Apple's 1984: The Introduction of the Macintosh in the Cultural History of Personal Computers, http://www.duke.edu/-tlove/mac.htm (last visited Nov. 30, 2007) (discussing the memorable and oft-parodied Macintosh commercial that aired during the 1984 Super Bowl). 2. See Lindsey Gruson, Centerfor Transplants and PittsburghAscent, N.Y. TIMES, Sept. 16, 1985, at A I0 (quoting William R. Berry, Executive Director of the American Council of Transplant Physicians as saying "[w]hen you say medicine, I think transplant"). 3. GEORGE ORWELL, NINETEEN EIGHTY-FouR (1949). 4. See, e.g., Chris Roark, From One to Another, CAROLLTON LEADER (Tex.), Apr. 25, 2007, available at http://www.courier-gazette.com/articles/2007/04/25/carrollton-leader/news/02front.txt (discussing a wife's organ donation to her husband). 5. See, e.g., Eugene Volokh, Medical Self-Defense, ProhibitedExperimental Therapies, and Paymentfor Organs, 120 HARv. L. REv. 1813 (2007). Published by Yale Law School Legal Scholarship Repository, 2008 3 Yale Journal of Health Policy, Law, and Ethics, Vol. 8 [2008], Iss. 1, Art. 4 YALE JOURNAL OF HEALTH POLICY, LAW, AND ETHICS V11I: 1 (2008) interest can develop into an informed policy discussion, a more complete understanding of what NOTA was intended to do, and what it actually ordained, is needed. A LexisNexis search of American and Canadian law journals for the phrase "National Organ Transplant Act" yields 232 articles. Clearly, the Act has generated substantial interest among legal scholars since its enactment in 1984. Much of this attention has focused on a provision of NOTA prohibiting the exchange of human organs for "valuable consideration."6 Of the 232 results from the original LexisNexis search, 218 contained the word "market" or "sale." More than 120 contained the phrase "valuable consideration," mirroring the language of the Act itself 7 Beyond the extensive debate surrounding this one controversial provision, the existing literature acknowledges the comprehensive nature of NOTA but does not provide a clear image of the statute's details. Scholarly accounts of NOTA vary so greatly that, depending on which account one reads, one might absorb radically different understandings of the law's scope, import, and underlying motivations. One major point of disagreement concerns whether the organ allocation system established under the Act reflected the intent