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Playing with Matches without Getting Burned: Public Confidence in Organ Allocation
- The University of North Carolina Press
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playing with matches without getting burned public confidence in organ allocation jed adam gross The great desiderata are public and private confidence. No country in the world can do without them. . . . The circulation of confidence is better than the circulation of money.—James Madison, Ratifying Convention for U.S. Constitution, 1788 According to one journalist, Jesica Santillan ‘‘died after a botched heart and lung transplant that shook the nation’s confidence in the organ donation system.’’∞ Even before Jesica Santillan became a household name, members of America’s transplant establishment recognized that public controversy over a range of issues could undermine confidence in the transplant enterprise. These flashpoints included determining when transplant surgery was medically and morally justifiable, foreign patients’ access to donated organs, and disparities in medical care along lines of race and wealth. In the aftermath of Santillan’s death, the United Network for Organ Sharing (unos), the nonprofit organization that oversees the country’s organ allocation network , rea≈rmed its commitment to ‘‘ensur[ing] public confidence in the transplant system.’’≤ This chapter first examines why public confidence is a paramount priority for transplant policymakers and why it is so di≈cult to sustain. It then traces how competing constructions of public confidence have shaped the flow of organs through American medical institutions. public confidence and questions of trust The immediate explanation for this sensitivity to matters of public confidence is straightforward enough. In a democratic society, the use of transplantable organs is subject to the consent of the public. More specifically, state legislation establishing an opt-in system of organ procurement necessitates public confidence in organ allocation 181 not merely passive acquiescence but the express consent of individual donors to sustain the transplant enterprise. At the same time, because Congress has prohibited the sale of organs, advocates of organ donation must appeal to motives other than monetary gain. Further, transplant surgery is costly, and its costs must be borne by members of the public, whether through tax payments, insurance premiums, or some other mechanism. Thus, public confidence is constructed in two ways: by persuading individuals and families to donate organs, and by building collective political and economic support for the transplant enterprise. The media, Congress, medical centers, and religious organizations are among the institutions in which public confidence is solidified or weakened. Within these institutional arrangements, the actual task of building public confidence has a circular quality: while the ability to allocate organs to needy patients depends on the public’s willingness to donate, the public’s willingness to donate also depends on how the organs are allocated. Thus, for nearly as long as organ allocation policies have been subject to human choice, the people setting the policies have endeavored to ensure that they will promote a virtuous cycle and not a vicious spiral. The organizational forms that the American transplant project took were not foreordained by transplantation’s technical requirements. Whereas the American system relies on voluntary, uncompensated donors, other liberal democracies obtain organs by presumed consent or allow valuable compensation to organ providers. Whereas American allocation policies center on the nation-state, many continental European countries participate in a multinational Eurotransplant network. Nor can one simply conclude that such fundamental design decisions reflect Americans’ general policy preferences in matters of political economy. In 1984, Congress e√ectively established a single , national organ distribution system that would restrict nonresident aliens’ access to transplants, but such regulatory interventions in vital sectors were hardly characteristic of the Reagan era. Indeed, certain aspects of the Americanorgantransfersystem —theuseofgeneticcriteriaforallocatingorgansand the instrumentalization of ethnic loyalties to recruit donors—could be quite o√ensive in another national context. As Richard Cook notes in another chapter of this book, organ allocation and transplantation are a ‘‘socio-technical ’’ process. Understanding why public confidence demanded a particular architecture for organ distribution requires an appreciation of some peculiar technical features of transplantation in the United States and why these features were particularly of concern for much of American society. [44.200.74.73] Project MUSE (2024-03-28 11:28 GMT) 182 jed adam gross the special status of transplantation in the united states Transplantation is unusual because it forces members of our a∆uent society to confront dire scarcity and the rivalries scarcity engenders. These rivalries include both conflicts of values and competition for material resources . Cultural observers from Alexis de Tocqueville to twentieth-century historian David Potter have proposed...