As they enter the world of organ transfer, members of each of these involved categories of participants are bound by a sanctioned set of behaviors; they nevertheless regularly defy associated taboos. Communication between donor kin and organ recipients still stands as among the most subversive acts, although efforts to restrict encounters are eroding. Many people now attempt to locate one another: recipients are driven by the desire to encounter the families that saved their lives, while surviving donor kin long to track the destinations of their lost loved ones, whose essences are embodied in transplanted body parts. An extraordinary array of complex—and frequently long-term—relationships are established as a result of these encounters. Whereas these relationships may seem strange and unsettling to the uninitiated, within the realm of organ transfer they are natural responses to an extraordinary form of death, to the medical ability to revive human life, and to the fact that organ transfer is about sharing hidden parts of oneself with a community of anonymous strangers.
A Comparative Approach to Organ Transfer: Field, Methods, Scope
A sociocultural and medical anthropologist by training, I am wed to ethnographic approaches to data collection, those that, more specifically, frequently demand long-term immersion in a cultural milieu. My earlier anthropological projects, set within a radically different context in tropical Africa, focused on aspects of suffering and healing in a cosmopolitan migrant community in Madagascar (Sharp 1993, 2002c). Although some readers may be troubled by the disruption such a reference generates, my work in Madagascar has proved essential to much of my thinking about organ transfer in the United States. Anthropology is by definition a comparative science, the discipline driven by the assumption that one may glean more of a given culture through comparison with others. Thus, my knowledge of healing in Madagascar has been enriched by medical anthropological studies set elsewhere. Likewise, cultural bases of health and suffering that are peculiar to Madagascar throw American assumptions into high relief. Among the most striking are Malagasy people's beliefs about death, for this is an island known for its elaborate mortuary rituals. I have long remarked that anyone who conducts anthropological research on this island is destined to write about death, for the majority of Malagasy devote great emotional and financial attention to determining where their bodies will be placed once they die (Bloch 1971; Feeley-Harnik 1984,1991; cf. Evers 2002).
Personal concerns—as well as research set in other cultures—may well shape the thrust of an ethnographic investigation, where encounters in one context “bleed” into another (cf. Rapp 2000:1). As Rayna Rapp comments, “The boundaries between self and other, or more properly, several selves…are inherently blurry. Beyond the rich research materials generated” by the requirements of a specific project “lies another realm of informant collection…that I would describe as ‘serendipitous' or ‘karmic’” (2000: 14). This most certainly has been my experience during this extraordinary journey within the realm of organ transfer. The greatest inspiration for this work in fact springs from an event that occurred one night when I was in Madagascar: I had been invited to dinner by my dear friend Dr. Annie so that I might visit with her father, the historian Raherisoanjato Daniel (Papan'i'Annie). Papan'i'Annie, a senior among his Betsileo kin, is a marvelous storyteller whose gift for gab in quotidian circumstances transforms him into a legendary orator in ritualized contexts.23 Midway through this family meal I left for the kitchen to bring out more food; when I returned, Papan'i'Annie was sitting before a captivated audience, recounting a grisly tale of body snatching set in the United States. I found that I could not hold my tongue, and I seized the first opportunity to insist that such things did not occur in my homeland. In response, everyone at the table fell silent, but then Annie, in her wonderful way, burst out laughing, patted me on the arm, and explained that her father was simply recounting one of his favorite science fiction stories.
Papan'i'Annie's tale inevitably stimulated my own thinking on the subject. At the time, my work in Madagascar focused on the symbolics of the body and local understandings of commoner and royal death. I knew of Malagasy fears of heart-and blood-thieves (mpaka-fo, mpaka-raha) and their deadly association with sorcery practices, and, as a result of conversations with Annie and a host of other Malagasy health professionals, I perceived how impossible national blood drives could be on this island, because doctors would quickly be viewed as having nefarious goals in mind (cf. White 2000). I pondered this stance from a comparative perspective, making note of its possible relevance for a future research project set within the United States. Later, while writing my dissertation in California, I had the great fortune of being able to work as a research assistant to Margaret Clark, who was writing about the ethics of transplantation from an anthropological perspective (Clark 1993, 1999). This experience roused my curiosity even further.
My opportunity to explore questions of organ transplantation arose during my first teaching position in Indianapolis, where in 1990 I joined the staff of a small urban-based university as its first full-time anthropologist. I had spent my high school years in a small midwestern town, and so I knew that international travel would be a rare experience for most of the young people whom I would teach. In fact, the majority of my students had never ventured beyond the state's boundaries; as a result, my tales of Madagascar were outrageously exotic, and thus I sought to illustrate to them (and to some of my colleagues) that anthropology could be practiced in one's own backyard. I had read that Indianapolis was an important regional transplant center, and preliminary probing uncovered the fact that no fewer than four separate hospitals in this city of approximately one million had transplant units. (A few years later the number would shrink as hospital centers consolidated.) Taking my chances, I made an appointment to speak with a transplant social worker based at one of the city's largest units. By the end of the month, I had worked my way through a hierarchy of specialists whose consistently warm welcome quickly enabled me to become a participant observer on their ward. This marked the beginning of a truly remarkable journey.
Ethnographic research is heavily qualitative in its approach, and thus the bulk of the data reported here is generated from one-on-one, open-ended interviewing techniques and through participant observation in a host of settings. Such work is complemented by additional data collected through group interviews, survey work, and archival research. Interviews themselves have targeted all three domains of organ transfer and have involved thousands of hours spent with transplant surgeons, neurologists, transplant nurses, social workers, and hospital chaplains; organ recipients and their kin; the surviving kin of organ donors; organ procurement specialists; public relations staff who promote organ donation; mortuary technicians; medical ethicists; and research scientists involved in experimental research.
My research on organ transfer falls into four phases of activity. The first phase (1991-94) focused on transplantation, the most popularly researched—as well as most accessible—domain (Sharp 1994). This work was based primarily in a major transplant hospital in the Midwest whose unit performed kidney, heart, lung, and liver transplants. The bulk of my time was spent in the company of organ recipients, patients awaiting transplants, their respective kin, and the nurses and social workers who assisted them with an array of medical, insurance, family, and daily survival needs. Here I conducted one-on-one interviews with a dozen transplant patients and, in two cases, their kin; six nurses and social workers who assisted them; a hospital chaplain; and two procurement professionals from the local OPO. I was also welcomed as an integral member of a monthly support group meeting for patients who awaited or who had received transplants. Participant observation was an integral activity, and I attended meetings regularly for more than two years. I also attended three separate memorial services hosted by hospital professionals and staff of the state's OPO; these were designed to enable organ recipients or donor kin to pay tribute to the city's annual roster of organ donors. Complementary data on patients' experiences with kidney transplantation formed the core of a research project conducted by my student assistant Marcy Assalone who interviewed a handful of patients and three health professionals in addition to conducting participant observation on a dialysis ward. Marcy also helped distribute and analyze a survey on local attitudes on donation within the university community where I taught.
In addition to primarily locally based activities, in summer 1992 I accompanied the hospital's team to the Transplant Olympics in Los Angeles, a biannual event hosted by the National Kidney