There are certainly many other direction that anthropological research on transplantation might take, but let’s turn out attention to the question of methods: How might an anthropologist investigate some of the areas already mentioned? An obvious first source of information is the mountain of professional and public relations material published each year by persons involved in transplantation. This includes research report, ethical debates, and promotional materials (from the National Kidney Foundation). Just as Emily Martin analyzed immunology textbooks for the combat metaphors they use, so would it be possible to do a cultural reading of publication in transplantation. Reports on the “quality of life’ of organ recipients could be analyzed for what they reveal about how biomedicine defines a life worth living, as well as about the economic motivations behind and limitations of this research. Similarly, there is a multidisciplinary literature debating the merits and demerits of various approaches to organ donation that illuminates cultural assumptions about the value of the body after death.
Many avenues are open for research base on participant observation as well. Lesley attended the meetings of recipient support group; she and I have both traveled to the biennial athletic competition for transplant recipients, the “Transplant Games,” which is organized by the National Kidney Foundation as a part of its donor promotion campaign. Patricia did ethnographic work in village in India where healthy individuals are paid to donate a kidney for transplantation. And Linda has done extensive interviewing of “organ procurement” specialists in Germany.
I have found interesting differences between my present research on organ transplantation and the work I did previously with Peruvian shamans. In Peru, I negotiated the terms of my research largely on a person-by-person basis, gaining consent for participation in rituals and for individual interview from each shaman and every patient. I was very much an outsider, and I had the distinct impression that the purpose of my presence was never entirely clear to most of those with whom I spoke. Until my work appears in Spanish and is distributed in Peru, those who cooperated with me will not see what I had to say about them or about the healing tradition of which they were a part. Out research assistants, my coauthor, and I made every effort to proceed in an ethical fashion, but the fact is that those we interviewed gave more than they received. They also had to trust us to follow through on commitments to protect their identities when they requested that we do so.
My transplantation research presents a far more equitable relationship between “investigator” and “research subject”. I am not a cultural outsider in the United States. When I interview organ recipients, they know that they will have access to whatever I publish. Furthermore, there has been organizational resistance to my research that I did not encounter in Peru. Professionals involved in transplantation are very protective of their work, and they sometimes seek to avoid granting access to researchers who they suspect might have critical agendas. For example, the National Kidney Foundation declined to provide me with the video that they produced for participants in the 1994 Transplantation Games; I was only given the very abbreviated version that was released to television stations for promotional purposes, and then only after I put in writing how I intended to use it.
There is a fascinating paradox here. The profession of transplantation medicine has precious little to fear from the work of an anthropologist; this is a prestigious and economically powerful specialty in a medical system that is itself extraordinarily well positioned in the American social fabric. A Peruvian shaman, however, risks a great deal by opening his practice to the scrutiny of an outsider. There are laws against what he does in Peru and a long history of official repression and harassment. Although there are potential benefits from the notoriety that a shaman gains by having international researchers present at his rituals, there is also a serious threat posed by bringing a very discrete practice to public attention. Yet, I found far less hesitation about my research from shamans in Peru than I have encountered working on transplantation in the United States.
This paradox relates to some of the discipline-wide debates mentioned earlier. To whom and for whom does the anthropologist write? When anthropologists investigate powerful institutions in their own countries, which Laura Nader calls “studying-up”, how can they avoid accommodations that provide access at the cost of independence? What privacy rights and control over the use of research results should the anthropologist extend to persons who collaborate in research, whether they be well-connected persons at home or marginalized individuals in poor countries?
For medical anthropology, these issues have come into sharp focus as researchers have turned their attention to biomedicine. They have proved especially troubling when medical anthropologists apply their skill in clinical settings as partners to biomedical practitioners rather than as outside investigators. Critics have leveled strong charges against applied medical anthropology in biomedicine, arguing that it has the effect of promoting the already substantial control that physicians and their professional institutions have over our lives.