STUDYING TRANSPLANTATION IN AMERICAN CONTEXTS
Such imagined national horrors are of anthropological interest because they uncover a public uncertainty about the legitimacy of cadaveric donation policies.21 Anthropological analysis offers a means for sorting out the imagined from the very real possibilities that characterize this astonishing realm of medicine. Following Brodwin (2000c), I argue that those regions marked by the most pronounced anxieties often generate the richest data—precisely because they are so problematic.
A study of transplantation in America is facilitated by the fact that nearly everyone within our society has an opinion on it; further, such opinions are frequently marked by conflicting ideas about its relevance, viability, and social worth. For instance, most people support the premise that no one should have to suffer or die prematurely, and we regularly embrace the assumption that a primary role of biomedicine is to alleviate pain, prolong the joy of life, and stave off death whenever possible. But what if solutions require intense medical scrutiny, prolonged hospitalization, a medically orchestrated death, the fragmentation of the human body, or someone else's demise so that another can live? There are no clear-cut answers to which all involved parties agree. It is for these reasons that I, as a medical anthropologist, have been drawn to this arena of research for the last decade and a half.
Set against the peculiar paradoxes I describe here, my remarks run the risk of being perceived as a condemnation of organ transfer by those most intimately associated with this medical realm. This is far from my intent: rather, I argue as a social scientist with the goal of constructive critique. As asserted earlier, the methodologies of the anthropological enterprise offer ways to question and thus reexamine what is taken for granted within a social group about legitimate forms of thought, belief, and action. How, then, might we step back and consider the relevance of what is left unsaid? In response to my work, others occasionally ask me why I oppose transplantation (a question that always startles me). Such questioning merely exposes my failure to communicate the full complexity of the topic at hand. Organ transfer is clearly beneficial, its technological accomplishments saving and sustaining an inordinate number of lives in the United States. Many people I have met through this research would be long dead were it not for transplantation; thus, on a more visceral level, a condemnation of organ transfer would mean that individuals whom I cherish would no longer walk this earth. Thoughts of, for instance, a moratorium on transplantation, or an active campaign to discourage procurement, disturb me deeply.
My long-term fascination with transplantation's possibilities drove me initially to explore this research subject. As a child I was captivated by a televised broadcast about Christiaan Barnard's attempt to transplant a human heart in 1967, which was rendered all the more moving—and surreal—on our family's color television, acquired by my father. The broadcast in living color of this event, as well as other televised surgeries (I recall another riveting program on an eye operation) confirmed the brilliance of my father's seemingly extravagant purchase once and for all. Similarly, for many years I coveted our family's copy of Life magazine that contained a photographic essay on Barnard (Life 1967); when it was lost in one of the many moves that marked my childhood, I never ceased to long for a duplicate (which I subsequently acquired).Throughout my childhood my parents supplied me with a steady flow of transparent model kits of various bodies with removable parts. I painstakingly constructed and painted a “Visible Man” and “Visible Woman” (the latter could become instantly pregnant if so desired), a skeleton, a horse, and a human eyeball, displaying these together on a single shelf in my bedroom. I imagined myself one day occupying the glorified role of a surgeon who might indeed follow in Barnard's footsteps.22 Thus, the inner workings of the human body were familiar to me well before the age of ten, feeding my profound respect for an acclaimed surgeon who clearly knew it so intimately (cf. Selzer 1974). Although my interests later shifted away from physiology to the mode of social critique intrinsic to the anthropological enterprise, I have nevertheless maintained a profound interest in the human body, a focus central to my training as a medical anthropologist. It thus troubles me to read retroactive assaults on Barnard's professional character (Scheper-Hughes 1998a), or accounts that fail to question the preposterousness of some reports of body snatching (for impressive treatments of such folklore, see Campion-Vincent 1992,1997). As I have learned through my own research efforts, biomedicine in the United States is indisputably experimental, invasive, and technocratic, with transplantation merely offering an especially high-profile example.
Writing about Transplantation in America
There is no paucity of material on transplantation in the United States. So much has been published, in fact, that one can now speak of particular genres of style, or dominant narrative forms. These include strictly clinical treatments of organ function and patient survival outcomes; personal histories and journalistic patient biographies; and a burgeoning literature in the social sciences, initiated several decades ago by sociologists Renee Fox and Judith Swazey. My own agenda differs from the existing literature in several ways. As explained in the opening of this introduction, I draw heavily on the ethnographic method, my research to date spanning fifteen years (1991-2006) of work linking the three interdependent realms of organ transfer. My presentation is framed specifically by a set of paradoxical premises outlined here that hamper the ongoing success of transplant medicine. Such a focus facilitates a deep questioning of the often hidden assumptions that drive organ transfer, allowing in turn for a critical analysis of a range of interrelated symbolic, philosophical, and ethical constructions. The remainder of this book is composed of four essays, each of which focuses on an unusual, and thus remarkable, set of social relationships between donor kin and organ recipients that arise specifically in response to the presence (or absence) of the cadaveric organ donor.
These strangely original social responses to donors' deaths and their transferable body parts are rarely described in the literature precisely because, as I will argue, they are considered pathological or they defy the premises underlying transplant ideology and associated rules of daily decorum. In other words, acknowledging social relationships between donor kin and organ recipients as legitimate would require questioning the very foundation on which organ transfer rests in this country. In preview, I will offer a few brief examples. For instance, organ recipients are dissuaded consistently from thinking of their transplanted organs as being anything more than bits of flesh and blood. At times their organs are even described as if they were replaceable mechanical parts, in an effort to dehumanize their origins. In addition, transplant professionals often tell organ recipients that their thoughts should not dwell on their organ donors; for this reason recipients are given only minimal information about their donors' backgrounds. Recipients nevertheless regularly defy these directives, identifying psychologically in a host of creative ways with their imagined anonymous donors, integrating them into their newly formed sense of posttransplant self. Organ kin in turn are persuaded to donate the organs of lost loved ones through careful counseling from procurement professionals who emphasize the finality of brain death. Procurement staff may also promote the contradictory message that donors can live on in the bodies of others, a construction widely embraced by donor kin long after donation has occurred. Such contradictory messages have a profound effect on