Strange Harvest. Lesley A. Sharp
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on data generated from my research on xenotransplantation, or the creation of transgenic animals (simian and porcine) that might one day supply organs for human implantation. I am especially interested in how scientists imagine xenotransplantation's possibilities as a miraculous medical frontier, and how the potential hybrid melding of humans with animals may generate a new set of lay and professional anxieties. This most recent work is complemented by a survey I distributed to fifty students during the first phase of my research, and an additional, much smaller set to faculty and staff at the university where I taught in Indianapolis (all returned completed questionnaires). This survey focused on respondents' reactions to the possibility of receiving replacement parts of human, simian, porcine, and mechanical origins. Xenotransplantation marks a radically new approach to the human body; of greatest interest to me are highly contentious debates over definitions of human nature, species integrity, and deliberate evolutionary change, as well as the manner in which involved research scientists imagine its possibilities. Xenotransplantation also underscores constant—and now intensified—forms of body commodification as the demand for organs increases and, thus, renders them scarce and highly coveted goods of human origin. My ethnographic work during this final phase has involved interviews with four research scientists, two neurologists, and four medical ethicists and attendance at numerous international and national conferences specifically to gather data on new experimental efforts. I remain deeply indebted, too, to Thurka Sangaramoorthy, whose earlier work as a research assistant later shaped her ideas for a senior thesis project in anthropology at Barnard College (Sangaramoorthy 1998).
My long-term involvement in this medical realm has inevitably led to encounters with an array of extraordinary individuals. Professionals and lay participants alike have willingly offered their candid remarks, heartfelt sentiments, and personal reflections on the significance of organ transfer in their lives. I am deeply grateful to the many individuals who have, without exception, welcomed me so warmly to the workplace, into their homes, to support groups, and to celebratory and commemorative events. As the data reported throughout this work reveal, the realm of organ transfer is troubled by the contradictory nature of public versus private experience. More specifically, sanctioned, and thus often bureaucratized, policies and behaviors frequently serve to deny, mask, and silence the thoughts of those whose lives have been affected so intimately by organ transfer. A question that arises, then, concerns the ethics of reporting, especially in instances where interviewees' statements offer direct challenges to transplant ideology.
Anthropology as a discipline has long insisted on the importance of protecting the personal identities of research participants. From the onset of my research I have made assurances to participants that they would remain anonymous in my writings and that their statements would remain confidential. Thus, all names reported here are pseudonyms; further, as explained to participants during the process of obtaining informed consent, minor, and thus relatively insignificant, details have been altered to ensure even further that the speaker or organization described remains obscure. (Typically, such details consist of a person's hair color or age, or an organization's name or location within the country.) I trust that participants will not be disappointed, then, if indeed they cannot locate themselves within the text. One point of exception involves references to five nationally known organizations—the United Network for Organ Sharing (UNOS), the National Kidney Foundation (NKF), the Transplant Recipients International Organization (TRIO), the National Donor Family Council (NDFC), and LifeNet of Virginia. Their publications and public activities are so well known and central to organ transfer that it would be impossible to obscure their identities. Specific employees' identities nevertheless remain obscure, except in instances where I quote published work (in print or Web-based form).
Organization of the Study
This book is organized as four essays, each of which focuses on a specific set of social practices and relationships peculiar to the world of organ transfer in America. Each is mitigated by the presence—or, more appropriately put, the necessity—of the cadaveric organ donor. In chapter 1, I analyze the paradoxical nature of brain death criteria, exploring in turn the significance of scarcity anxiety in shaping how transplant and procurement professionals think of and speak about donors' deaths and their body parts. Especially intriguing are the elaborate ways in which dead bodies are transformed symbolically so as to render them simultaneously inert yet life-giving. Chapter 2 then turns to dominant forms of “memory work”: these projects—both public and private—commemorate selfless acts of giving that are intrinsic to organ transfer's success. An astounding aspect of such projects is the radical difference between how transplant-related organizations commemorate donors' lives and deaths, versus how surviving kin understand memory work. Among the more pronounced differences is the professional desire to protect donor anonymity, whereas donor kin struggle openly to proclaim highly personalized histories of individual donors. Surviving donor kin have grown increasingly wary of professionally orchestrated events because such efforts silence public grief and deny the individual identities of their beloved.
Chapter 3 pursues other facets of themes found in chapter 2, analyzing specifically the peculiar nature of sociality as it is conceived of in the realm of organ transfer. This chapter looks specifically at those instances where donor kin and organ recipients break down the barriers of anonymity and seek out one another, not unlike the process of adoptees finding their biological parents. Face-to-face encounters between donor kin and organ recipients inevitably develop into long-standing bonds of intimacy, where terms of fictive kinship define and legitimate these deeply peculiar new forms of association. Chapter 4 extends questions about sociality even further by examining the implications of highly experimental research contexts, where genetically altered nonhuman simian and porcine species bear the promise of generating organs for human use. Of key importance here are the ways in which medical and research scientists versus organ recipients view the ethical quandaries involved in melding human and animal bodies.
As argued throughout this introduction, organ transplant surgery has acquired iconic status within the American imagination as a simultaneously wondrous and disquieting medical field. It is frequently argued that technological innovations are always disturbing, especially when new (Van-derpool 1999). A striking facet of transplantation, however, is its persistent ability both to produce wonder and to disturb, even after half a century of astounding medical success. As Barbara Koenig (1988) explains, ethical debates over medical techniques are most pronounced at their onset; once their use become routinized, concerns subside or altogether disappear. Most interesting is the failure of organ transfer to become routinized within the collective lay imagination in the United States even after half a century of practice.
As a means for exploring the significance of this peculiar development, I offer alternative methods of seeing and knowing, with data generated from long-term ethnographic involvement in the field. In utilizing anthropological forms of analysis, I hope to broaden social understandings of hidden aspects of this highly lucrative and astonishingly skillful branch of American medicine. Anthropology (and medical anthropology more specifically) offers a compelling array of theory from which to draw, with its strong concern for the symbolics of the human body, transcultural sensitivity to modes of death and mourning, and burgeoning interest in bioethics. As we shall see, transplant medicine defines a nexus for a complicated array of medical, social, and economic practices. Through culturally informed critique I strive to generate more open discussion and debate, and perhaps stimulate the transformation of medical policies that concern technological innovation, public trust, patient care, and the handling of cadaveric bodies. With this in mind, let us begin with the peculiar subject of the brain dead organ donor.
1 We Are the Dead Men
Mind over Matter
The human body is a fascinatingly peculiar thing: its size can range from under twenty inches at birth to an adult stature of more than six feet, and as it matures it masters the ability to move through the world, first by rolling over, then