Strange Harvest. Lesley A. Sharp
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of Transplantation, Clinical Transplantation, Liver Transplantation and Surgery, Pediatric Transplantation, Transplant Immunology, and Transplantation International, to name but a few. Numerous social scientists also have worked on the subject of transplantation: early studies date back to the first kidney transplants of the 1950s, attempts that were facilitated by the advent of hemodialysis a decade earlier. Organ transplantation indisputably generates an unusual combination of curiosity, celebration, and anxiety. As such, it defines a highly problematic and fascinating realm of medicine in America.1
Through ethnographic investigation, Strange Harvest strives to decipher the problematic status of organ transplantation in this country. As an anthropologist I approach transplantation as an exotic branch of medical culture, with its own particular ethos that guides the behavior, thinking, and embodied practices of involved professional and lay parties. In applying the label exotic, I have no intention of demeaning the transplant profession. Rather, I concur with Micaela di Leonardo, who asserts the need to consider “exotics at home” and posits that the anthropological stance initiates an examination of cultural phenomena that are “hidden in plain sight around us” (1998:10). My purpose is to identify and rethink much of what is taken for granted about organ transplants in the United States. In turn, I seek to uncover essential elements of an intriguing medical realm that remain unseen or unspoken, either because they seem far too mundane to warrant consideration or because professional policy imposes taboos that ultimately obscure such key elements from plain sight.
The mode of questioning that drives this work is characteristic of anthropology; the great beauty of the discipline is its persistent devotion to shifting frames of reference, a process that inevitably renders the strange familiar and the familiar strange (Geertz 1973: 215, after Percy 1958; also Malinowski 1961 [1922]). In addition, ethnographic research involves a special form of witnessing (Geertz 1983: 73-101), the ethnographer assuming an odd combined stance of both professional stranger and friend among research participants (Agar 1996; Powdermaker 1966). The anthropological fieldworker always aspires to the role of keen observer, one who nevertheless struggles to maintain a relativist position. When successful, the process of “being there” enables the anthropologist to observe, translate, order, and then interpret systems of local knowledge, and even at times to offer alternative readings of cultural truths (Geertz 1988:1-24). An assumption that underlies this book is that organ transplantation defines an intriguing and exotic milieu in which to explore a highly specialized array of medicalized behaviors and associated ideological premises.
This book is first and foremost an ethnography; on a very basic level, it insists on the power of vivid description as an illuminative technique. As such, this book augments a puny yet sophisticated collection of detailed research authored by social scientists working in the postindustrial settings of the United States, Canada, Japan, and Germany. Nevertheless, it marks an important break by exploring a wider range of activities than those that typify existing studies. Most important, the word transplantation is regularly employed in the literature as an umbrella term and is applied to a wide range of activities. In contrast, I assert the need to recognize organ transplantation's dependency on two other domains of medical practice: organ procurement and organ donation. My point is that existing book-length research overwhelmingly privileges transplantation alone and may even treat it without any discussion of these other two domains. Renee Fox and Judith Swazey's long-term work in the United States on living donors who offer one of two functioning kidneys to kin in need, Linda Hogle's examination of organ procurement in unified Germany and the United States, and Margaret Lock's comparative study of brain death in Japan and North America are laudable exceptions to current trends (Fox and Swazey 1978,1992; Hogle 1999; Lock 2002).2 The privileging of transplantation elsewhere occurs in large part because hospital transplant units are more readily accessible to medical investigators, and transplantation as a research concern is a far less emotionally trying subject than organ procurement or donation, both of which are inevitably morbid in focus. Researchers who study transplantation most certainly must confront the suffering and even the deaths of patients, yet medical successes often render their work joyfully rewarding. I assert, however, that death and suffering frame much of the research within the other two domains because critically ill patients, who are rapidly relabeled as brain-dead cadaveric donors, are so frequently involved.
As I will explain in greater detail, the overwhelming attention given to transplantation is what eventually drove me to work successively within all three domains. As a result of my range of activities, I have come to view transplantation, procurement, and donation as inextricably intertwined. Transplants, for instance, could not occur as frequently as they do in the United States if organ donation and procurement were illegal. Likewise, families would never be approached about donation in hospital intensive care units (ICUs) were there no patients elsewhere awaiting transplants, nor would organ procurement be considered a medical necessity or important specialized profession. Throughout this book I employ the expression organ transfer as a unifying term intended to underscore the interdependency of these three domains, thus also avoiding the assumption that one domain is more important than the other two. This study nevertheless privileges the experiences of donor kin and procurement specialists as a means to offset another strong focus within the current literature, specifically that on organ recipients' lives. As will soon become clear, however, the lives of donor kin and recipients are elaborately intertwined as well, in such intriguing ways that a discussion of one necessitates making reference to the other.
As Gregory Bateson once argued (1958), careful anthropological investigation can illuminate the hidden complexity and grace of a cultural ethos—that is, an unconscious moral code that guides human actions, thoughts, and language within a particular social group. In my study of organ transfer, descriptions of medical techniques, key settings, and subjects are essential if readers, especially those who are not medically trained, are to follow my purpose. This work is driven by a desire to translate the deeper meanings associated with organ transfer as a sociomedical process. When research is set squarely within the realm of organ transfer, such anthropological probing emerges as an epistemological enterprise (see Scheper-Hughes and Lock 1987), one framed by especially pronounced concerns for such themes as the symbolics of the human body, physical suffering, medical expertise and public trust, competing definitions of death, and proper forms of mourning. Against these interests, certain key issues define the parameters of this book.
Strange Harvest is concerned exclusively with cadaveric donation. That is, it focuses on contexts where transplantable organs are acquired from the bodies of deceased hospitalized patients, the vast majority of whom are declared brain dead and are maintained on respirators in anticipation of organ procurement surgery. Donors are peculiarly liminal beings, caught somewhere between patient and cadaver status. Early in my research I was struck by the pervasiveness of language designed to depersonalize these donor-patients and, further, by the ways in which involved professional and lay parties struggled to make sense of this process while nevertheless embracing donation, procurement, and transplantation as laudable and necessary social acts. I also soon came to learn that a host of intriguing social relationships emerge among these parties in direct response to the presence of the cadaveric donor. As we shall see, even the donor body itself may be reanimated in the minds of recipients and donor kin who share the understanding that transplanted organs can retain the life essence of their donors. Organ transfer mitigates these peculiar and fascinating social relationships and associated symbolic constructions precisely because it relies on retrieving organs from donors who are considered legally and medically dead and who, at least at the outset, are anonymous to transplant recipients.
A brief contrast with other forms of organ donation will help clarify the importance of my exclusive focus on the cadaveric body. Kidneys, for instance, can be transferred legally and with relative medical ease from living kin; recent news accounts also indicate a rise in the national incidence of kidneys offered by friends and even strangers to patients in need. This sort of organ transfer is referred to as living donation and involves two tandem surgeries. An assumption that renders this medical procedure possible is the widely accepted view that it poses relatively little harm to a healthy donor, who continues to thrive because he or she retains a second kidney.3 Much has been written on living kidney donation in the United States, with pronounced interest in the long-term survival rates of donors and recipients, as