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ОглавлениеIntroduction
Strange Harvest
Organ transplantation in the United States has entered a state of crisis, albeit one of its own design. The boldness of this statement rests on the supposition that transplantation simultaneously epitomizes technical genius and medical hubris in this country. Specialized surgeons now understand the function of highly sophisticated organs so well that they routinely remove these organs from the recently deceased, using them in turn to replenish life in their ailing patients. Nevertheless, even after fifty years of practice and refinement, transplantation looms as a troubling realm of medicine, especially within the lay imagination. Although it stands as an icon of medical accomplishment—and in some quarters may even be considered a routine response to a range of severe health problems—it nevertheless generates a host of perplexing questions about healing and illness, medical versus social definitions of death, the hybridization of human bodies, and nonmedicalized constructions of personhood, individuality, and the embodied self.
As a widespread surgical technique and lucrative arm of medicine, transplantation has generated a plethora of literature: its persistent ability to fascinate ensures its recurrent treatment within the mainstream press (early developments were featured on the cover of Life magazine). Organ transplants also provide rich fodder for plots in a wide range of media, including thriller fiction, television dramas, and film. Further, transplantation, as an icon of medical accomplishment, defines a regular subject of scientific inquiry in such flagship medical publications as the Journal of the American Medical Association, the New England Journal of Medicine, and the Lancet. It also lays claim to a range of specialized periodicals, including Transplantation, Transplantation Proceedings, the American Journal 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 well as the nature of their social relationships (see especially Fox and Swazey 1992). The United States as a research context shapes these dominant concerns, for as one moves into the global arena, the focus shifts rapidly to investigations of both legal and clandestine forms of trafficking in human body parts, with organs taken from donors who, unlike recipients, lack access to quality health care.4 My decision to limit my focus to the United States is in part a matter of scale. The United States has long stood as a world leader for organ transplants, both in terms of the innovative use of biotechnologies and because of the sheer volume of surgeries performed each year. Today many American cities can boast of at least one hospital with a transplant unit, and as other researchers have found, it can be difficult to avoid comparison with the United States when writing about transplants elsewhere (Hogle 1999; Lock 2002). I therefore leave living donation, tissue (that is, non-organ) procurement, and global trends for others to explore.
As the chapters in this book detail, highly complex social relationships arise in response to cadaveric donation. These relationships can be difficult to uncover because of the strict taboos imposed by involved health professionals, many of whom, for example, insist that donor bodies be viewed as mere corpses that generate reusable parts; that recipients should neither identify with or idealize their donors nor humanize their organs; and that surviving donor kin and recipients should not communicate with one another but instead move on with their separate lives. Nevertheless, many health professionals wrestle privately with highly medicalized constructions of donors' deaths. Further, recipients do in fact imagine a donor's identity in all sorts of ways and frequently integrate this unknown Other as an intrinsic part of their subjective sense of self. Finally, organ recipients and their donors' surviving kin may long to encounter one another, and they may go to great lengths to do so, even when blocked by transplant professionals who hold records of their respective identities, addresses, and histories.5 Among the great ironies of organ transfer in the United States is that it generates a host of new social relationships that at first may seem altogether strange to the uninitiated, yet which are in fact common and, I argue, culturally generated and thus naturalized responses to the peculiar qualities of cadaveric organ donation.
With this in mind, I am most intrigued by the manner in which medicalized definitions of death affect how involved parties think about organ donors, transplanted organs, and donors' deaths. Key to understanding cadaveric organ donation is that it relies overwhelmingly on donors who have sustained sudden, unexpected head traumas and who are declared brain dead within hospital settings (most frequently by staff neurologists in hospital ICUs). Because the shadow of death pervades this form of organ transfer, I argue that very particular and peculiar responses emerge that stand in contrast to those associated with living donation. Donor death is highly problematic: for transplants to be socially acceptable, all involved parties must embrace legal definitions of brain death as legitimate in medical, physiological, and spiritual terms. Nevertheless, careful probing reveals that there is tremendous disjunction between expressed public (or official) and private understandings of brain death criteria. For these reasons, throughout this book I will refer to cadaveric (that is, of or like a cadaver) forms of donation while avoiding the label cadaver when speaking specifically of the organ donor (that is, the donor-patient). Also, the logistics of donor care inevitably force involved parties to struggle with conflicting messages about death and suffering. This remains true regardless of whether one is a transplant specialist who works with patients on a transplant ward; a procurement professional who talks to kin about donation as a loved one lies dying in an ICU, and who may later assist, too, in the surgical procurement of organs; a patient who becomes an organ recipient through transplant surgery; or a donor's surviving kin who have granted permission so that a donor-patient's organs can be taken and transplanted in recipients elsewhere. The unusual form of death so intrinsic to organ transfer's success generates deeply personal responses, which persist long after donation, procurement, and transplantation occur. These responses may stand in stark contrast to what is currently represented in the literature as transplant dogma.
As an in-depth exploration of the ethos of organ transfer, this book is structured around conundrums or nagging questions that I will refer to as transplant paradoxes. These paradoxes spring from a set of ideological premises that guide research participants' everyday actions and speech, as well as the tenor and focus of both specialized professional publications and promotional literature on organ transfer written for general audiences. As I shall illustrate throughout, a wealth of knowledge is embedded in the ways professional and lay parties behave and talk about organ transfer in a variety of settings, including transplant wards; professionally orchestrated events such as conferences, annual commemorative celebrations, and patient support group meetings; and interviewees' private homes. I am especially sensitive to dominant narrative genres—that is, the particular ways in which participants learn how to speak of or write about their experiences with organ transfer. Most intriguing is the fact that responses offered in public venues may differ radically from the private thoughts individuals share only with trusted friends, close colleagues, and, at times, the anthropologist. Applied carefully, the methodological approaches that define ethnographic research reveal insider understandings of transplant decorum, exposing those moments when involved parties defy scripted forms of behavior, or when they question dominant ways of thinking about organ transfer. Surprisingly, these moments of disjunction are hardly rare. My ultimate goal is to uncover these paradoxical moments and then decode their significance as a means for understanding organ transfer as a dominant, albeit troubled, sociomedical process in America.
THE IDEOLOGICAL UNDERPINNINGS OF ORGAN TRANSFER
The cadaveric organ donor offers an especially rich site for exploring the paradoxical nature of organ transfer in the United States, where discussions of this unusual category of patient rapidly shift to a questioning mode. First, when considering cadaveric donors, do all parties think of and respond to them as a social category? For instance, how do donor kin, on the one hand, and hospital staff, on the other, talk about brain dead donors or behave when in their presence? What sorts of ideas about donors do transplant recipients and their surgeons, nurses, and social workers share, and where might their ideas diverge? Second, is it possible to speak of a collective understanding of the cadaveric donor body itself, or can conflicting ideas coexist? Can the donor be viewed simultaneously as a deceased loved one, a source of exchangeable parts, and the repository of an unusual kind of social gift? Third, does the presence of the organ donor clarify or confound understandings of death? And when precisely does a donor's death occur? Do all parties concur? Is it at the moment when a neurologist declares a patient brain dead, or during surgery when a donor's organs are removed? Is death lodged in the brain, the body, a soul, or a combination of these or other possible sites? Fourth, do brain death and organ donation confirm, confound, or enhance cultural understandings of personhood and social worth? Where does the donor-as-person dwell before, during, and after the surgical removal of transplantable organs? What issues are at stake when donors' identities remain anonymous? Finally, does it make sense to ask who owns the donor body and its parts? Can anyone claim rights to the donor's transplanted organs? If so, following transplantation, do organs belong exclusively to their recipients? If others lay claim, at what point should they relinquish their hold?
These overlapping philosophical, ethical, and cultural dilemmas shape this investigation as a whole. At one level, such questions define the parameters for debates considered regularly by medical ethicists. My purpose, however, is neither to offer definitive answers nor even to negotiate conflicts so that a compromise might be reached that would satisfy both the emotional and the practical demands of involved parties. Rather, from an anthropological standpoint, I view such debates as generating valuable data that ultimately expose troubled yet culturally driven concerns about organ transfer in this country. Such concerns are also linked to larger problems that plague medical practice more generally, especially regarding the medical versus social worth of patients; the social significance of the hospital death; the importance of altruism and kindness in medical contexts; and perplexing questions about death and proper forms of mourning. Thus, my work is most heavily invested in exploring the subject and tenor of these debates to broaden medical policy discussions and to stimulate frank and open public consideration of the social value of organ transfer.
As I will explain here and illustrate in subsequent chapters, transplantation rests on a paradoxical set of ideological or moral premises that guide medical conduct, professional public outreach efforts, and dominant lay understandings of death, the body, and gift giving. The tenuous nature of the assumptions driving organ transfer also contributes to the current transplant crisis in America. In this regard, transplant ideology relies on the following set of premises: (1) the concept of transplantation as a medical miracle; (2) the denial of transplantation as a form of body commodification; (3) the perception of transplantable organs as precious things; (4) the dependence on brain death criteria for generating transplantable parts; (5) the assertion that organs of human origin are becoming increasingly scarce in our society and require radical solutions; (6) an insistence that the melding of disparate bodies is part of a natural progression in a medical realm predicated on technological expertise; and, finally, (7) the imperative that compassion and trust remain central to the care of dying patients, even when a new corporate style of medicine demands an increasing number of transplantable organs. I will now consider the paradoxical nature of each of these premises.
The Miracle of Technocratic Medicine
Transplantation is regularly hailed as one of the great miracles of modern science. As such, it might very well be viewed as the quintessential example of millennial medicine, for we have remained in awe of its accomplishments since the mid-twentieth century and into the twenty-first. In one sense, labeling transplantation as miraculous is justified: it is truly astonishing that surgeons can save lives by replacing failing organs in their patients with those taken from other humans' bodies. Nevertheless, this passion for the miraculous can obstruct our view of a problematic underside.
The social construction specifically of transplant surgery as a miraculous procedure draws on the successful development of an elaborate array of sophisticated technologies intrinsic to American medicine. For instance, medical progress in this country is frequently tracked along timelines that trace the experimental design and implementation of a host of complex machines (for a recent example, see Maeder and Ross 2002). A quick glance at the history of visual technologies alone underscores this remarkable progress, as one moves, say, from the X-ray to the sonogram, CAT scan (or CT scan, for computed axial tomography imaging), magnetic resonance imagery (MRI), and fiber-optic devices.6 Of great relevance to organ transfer's success is the development of “life support” devices, a history marked by the development of the iron lung (invented in 1929 and in common use by the 1940s to sustain polio victims) to the routinized hospital use of the respiratory ventilator, the latter now essential to sustaining brain dead organ donors prior to and during procurement surgery. Other crucial technologies range from hemodialysis to heart-lung bypass devices. Pharmaceuticals represent yet another important thrust of medical success that renders posttransplant survival possible. Among the most significant developments involved the creation in the 1980s of the powerful immunosuppressant cyclosporine, which prevents the body from rejecting an organ of foreign origin. Cyclosporine and other immunosuppressants, paired with powerful steroids, are the mainstay of daily transplant survival for many patients.7 This array of technological developments has enabled organ transplantation to make phenomenal strides, so that it now epitomizes medical possibility within the collective American imagination.
The miracle of transplant surgery also underscores the impressive capabilities of mainstream cosmopolitan medicine in this country. For one, American medicine is overwhelmingly allopathic: in other words, it assumes a heavily biomedical approach to the human body and to suffering. In the healing encounter the patient is generally approached as an individual and, thus, as a discrete entity, where treatment is possible without considering the significance of a larger social milieu. This is because the body itself is viewed as a sophisticated organism whose splendor stems from its physiological complexity. The biomedical model is wed to the rationale of disease theory; as such, a progression from diagnosis to treatment and cure is essential to the paradigm. Allopathic practices can be highly invasive, driven by an overwhelming concern for the body's inner workings (marked, for example, by the displacement of general practitioners by internists in recent decades). As a result, the surgical ability to alter, remove, and replace body parts ranks among biomedicine's most impressive accomplishments to date. Through such practices the human body is rapidly transformed into a highly medicalized system of interdependent parts and processes.
Transplantation signifies the zenith of medical skill, albeit for a small minority it heralds the dangers of technological medicine run amok (Illich 1976). More generally, mainstream American medicine is wed to a technocratic model, argues Robbie Davis-Floyd (1994), relying increasingly on specialized diagnostic methods, technical procedures, mechanical implants, and a vast array of potent pharmaceuticals as a means to alter, cure, and improve the human body. At the high end of technocratic medicine, patients may emerge as little more than medically manipulated cyborgs, hooked up to an array of machines, their functions sustained by powerful drug regimens (Davis-Floyd and Dumit 1998; Downey, Dumit, and Traweek 1997; C. Gray 1995).
The United States is hardly unique here; it does, however, offer an unavoidable benchmark for comparison. Technocratic practices are part and parcel of capitalist medicine in this country. More so than in any other nation, American medical decisions are driven by private insurance responses to market trends, where high-end technologies are increasingly vilified in discussions on the rising cost of medicine (Neumann and Weinstein 1991:1). Health care costs in the United States totaled $1.3 trillion in 2000, jumping 6.9 percent from the previous year (Alliance for Health Reform 2003), and by 2002, these accounted for fourteen cents of every dollar spent in this country (PBS 2002). American consumers are drawn to technological innovation, too, a fact facilitated by legal marketing strategies, such as direct-to-consumer advertising of pharmaceuticals (Hogle 2001, 2002). Against these developments, transplantation defines a multibillion-dollar industry in America, and more transplants are performed in the United States each year than in any other country. In 1997, for instance, a national total of 20,297 transplant surgeries fell only 194 short of the 20,491 for all of Europe (ITCS 1997; UNOS 2003b).8 The technocratic approach to healing—as epitomized by organ transfer, and even more so by transplant surgery—is a medical fact of life in America.
The Commodification of Human Body Parts
Transplantation's ascent to iconic status as a miraculous medical procedure has generated a number of other troubling consequences. Among these is an overwhelming commodification of the human body (Scheper-Hughes and Wacquant 2003; Sharp 2000b). Today the human body is a treasure trove of reusable parts, including the major organs (lungs, heart, liver, kidneys, pancreas, intestine, and bowel); tissue (a category that includes bone, bone marrow, ligaments, corneas, and skin); reproductive fragments (sperm, ova, placenta, and fetal tissue); as well as blood, plasma, hair, and even the whole body (Hogshire 1992; Roach 2003). In 1978, Forbes estimated the worth of the full range of the human spare parts industry in the United States at $700 million, with a projected annual growth rate of 15 percent (Solomon 1978). Furthermore, by 1998 the country could boast more than one thousand biotechnology firms that manufactured products from bodily materials (Nelkin and Andrews 1998: 30-31). Today the trade in body parts has expanded well beyond this nation's boundaries, such that the international tissue market alone is worth at least $500 million annually (AP 2000).
Clearly, the cadaveric human body has become a highly lucrative entity: as many as 150 parts can be reused, and an individual body alone is worth more than $230,000 on the open market (Hedges and Gaines 2000; Pantagraph 1991). The manner in which body parts are categorized also affects their value. Long-standing legislation within the United States renders illegal the direct buying and selling of human organs so that their retrieval, distribution, and placement are managed solely by nonprofit organizations. These exchanges are strictly controlled at both state and national levels, as dictated by the 1984 National Organ Transplant Act (NOTA) and the Uniform Anatomical Gift Act, which was passed by all fifty states by 1973 (Maeder and Ross 2002: 44). Furthermore, organ procurement and placement are overseen by the United Network for Organ Sharing (UNOS) in Richmond, Virginia, under contract through the U.S. Department of Health and Human Services (HHS). UNOS administers the Organ Procurement and Transplantation Network (OPTN), established under NOTA and funded by Congress. Tissues, on the other hand, have encountered significantly less regulation and are handled largely by a wide array of for-profit national and international firms. Beyond the boundaries of organ transplantation, the reuse of human skin can be crucial to survival for persons who have been severely burned; other tissues are employed regularly for such purposes as dental and orthopedic reconstruction, cornea transplantation, and a wide assortment of cosmetic surgeries. When taken as a whole, the human “body shop” (Andrews and Nelkin 2001; Kimbrell 1993; Nelkin and Andrews 1998; Rothman 1997) shapes a significant portion of high-end millennial medical practice in America.
As Paul Brodwin (2000c) has argued, the intensity of ethical debates surrounding radical biotechnologies is evident in the levels of anxiety they generate, and organ transfer is no exception. Among the strongest ideological underpinnings of transplant medicine is the adamant denial of body com-modification. The collective horror Americans share for the utilitarian use of human bodies is apparent in our folklore. Negative associations link the reuse of body parts with Hollywood's original rendering of Frankenstein's monster. A persistent theme within futuristic Anglophone fiction is the routine and frequently clandestine medical or industrial use of human bodies to sustain society and feed individual or corporate greed. Classics include Harry Harrison's Make Room! Make Room! (1964; the basis for the film Soylent Green, in which the general populace is fed recycled humans without its knowledge); Robin Cook's Coma (1977; in which healthy people are drugged and held in comatose states until their organs can be removed for sale); and the darkly comical rendering found in Monty Python's the Meaning of Life (wherein procurement officials arrive at a man's home and assert their rights to retrieve his organs while he is still very much alive, all because he has signed his donor card). The corporate preying on the body stands as a symbolic form of necrophagy—or what Youngner has dubbed “nonoral cannibalism”—where a chilling utilitarian ethos drives villains to harvest body parts without guilt (Youngner 1996: 35; for similar language, see Fox 1993; Lindenbaum 2004; Scheper-Hughes 1998b). In these tales only sensitive heroes can still recognize the humanity of captured or discarded souls.
What such fictional stories (and parodies) reveal is that body commodification—especially within the highly celebrated arena of organ transplantation—quickly erodes an already shaky public investment in medical trust. In response to such deep concerns, the transplant industry has generated an elaborate array of powerful euphemistic devices that obscure the commodification of cadaveric donors and their parts.
Precious Things
The most elaborate and pervasive rhetoric involves the shrouding of body commodification in the language of a gift economy. This language is evident in early bureaucratized form in the wording of NOTA, or the 1984 National Organ Transplant Act. Today the language of the gift permeates nearly all discussions of organ transfer, which is defined as a very particular kind of social giving in America. Most important, organs are nearly always described as “gifts of life,” a turn of phrase that has long been used within the blood industry (and especially by the American Red Cross) and now in reference to ova donation (Ragone 1999). Both realms differ from organ transfer in that they are marked by histories of direct agency-to-donor monetary compensation. In the specific context of cadaveric donation, the vast majority of organs are offered by donors' surviving kin to anonymous strangers; procurement specialists help negotiate the transfer of these body parts to surgeons, who will then transplant them in their own ailing patients. Without question, much money is exchanged, but payments made by insurance companies, individual patients, transplant hospitals, and procurement agencies are typically described as covering technical, transportation, and other support services, rather than being linked directly to the cost of the organ itself. An important shared understanding within transplant circles is that taboos surround discussions of the financial worth of organs. Furthermore, strict moral sanctions insist that donor kin should receive no direct payment for a gift offered as an ultimate form of altruistic sacrifice.
Nevertheless, I have seen on rare occasions itemized price sheets for various organs. In one hospital where I conducted research, staff regularly distributed detailed price information directly to potential recipients so that they would know the enormous costs entailed in acquiring a kidney, heart, lung, or liver. Staff saw no reason to be secretive about this. Nevertheless, because such procedures are rare, they emerge as subversive acts. Perhaps more obvious is the fact that a transplant unit defines a tremendously prestigious program for any hospital, both assuming a high community profile and generating significant income for surgeons and for the institution itself. Procurement offices, too, though nonprofit firms, operate on impressive annual budgets dispensed by UNOS. Inherent tension underlying the daily struggle to maintain transplantation's credibility arises from the fact that transplantation is as lucrative as it is medically miraculous. One dominant solution to this conundrum involves the deliberate and ceaseless denial of even the more obvious forms of body commodification.
Cadaveric donation further complicates this configuration. Whereas a vast percentage of kidney transplants in this country involve living pairs of relatives, friends, or colleagues, in nearly all cadaveric cases the donor is an anonymous stranger to the respective set of organ recipients. In those situations where living donor and kidney recipient know one another, both parties understand the kidney as being a special kind of gift to which no monetary value can be assigned.9 This initial shared understanding eventually may become a source of either increased mutual love or insurmountable conflict. As Renee Fox and Judith Swazey explain, the “tyranny of the gift” springs from the sense that the giving of so precious a thing—a part of oneself—can never be fully reciprocated (1992:39-42). A different configuration arises in the context of anonymous cadaveric donation, where recipients are generally told only the age of their donors, their family status, the region of the country from which they came, and sometimes their cause of death. Recipients find it difficult to shake the sense that someone else had to die so that they could live, their anxieties exacerbated if they imagine how close kin—typically the donor's spouse, offspring, or parents—must have suffered when faced with the donor's sudden and unexpected death.
As a result, donated cadaveric organs simultaneously emerge as interchangeable parts, as precious gifts, and as harboring the transmigrated souls of the dead. Whereas transplant recipients are encouraged by hospital staff to depersonalize their new organs and speak of them in terms that can sometimes even approximate car repair, procurement staff regularly tell donor kin that transplantation enables the donor's essence to persist in others who are thereby offered a second chance at life. These competing messages offer evidence of what I refer to as a form of ideological disjunction, a pervasive characteristic of transplant ideology that inevitably drives professionals to become powerful gatekeepers who work aggressively to prevent communication between recipients and donor kin (Sharp 1994). Whereas these professionals may deliver contradictory messages to different people about the symbolic nature of transplanted organs, all parties are nevertheless united in the revulsion they feel for blatant forms of body commodification.
As Robert Coombs and his colleagues have illustrated, within hospital contexts, and especially in emergency wards, one encounters a rich array of medical slang, where death and dying patients define prominent foci. Indeed, organ transfer generates a specialized category of insider slang: common labels applied to patients include GPO (good [for] parts only), organ donor (a motorcycle rider or an accident victim with little chance of survival), and bone (bone marrow transplant) (Coombs et al. 1993). Within transplant wards and procurement offices, and during celebratory organ transplant events, one encounters an even richer panoply of symbolic expressions that specifically obscure references to death, human suffering, and body commodification. Donors' bodies, for instance, are frequently transformed metaphorically and visually into an array of greenery, including trees and flowers, a set of images that play off the idea that organs are transplanted in or grafted on to new bodies. Context also proves crucial for determining the appropriateness of various terms. For instance, those awaiting transplants are readily referred to as “patients” by all hospital staff, whereas potential donors, whether declared brain dead or not, are rapidly dehumanized. Procurement staff may even correct one another's language if someone refers to potential donors as “patients” or even as living individuals. Donor kin, however, insist on humanizing and personifying their loved ones throughout donation and procurement: personal names are always used, and a label such as “donor” is abhorrent.
Competing forms of euphemistic wordplay also serve to mystify the procurement process. Surgeons frequently employ the expression “organ harvesting,” viewing this as an unproblematic way to underscore the act of reaping life to assist others in need. Other professionals, however (and especially those who work with donor kin), are repulsed by this phrase because it offers an all too graphic reference to the physical destruction of the donor body. Agricultural imagery in other forms nevertheless abounds in all domains of organ transfer, marked by what I refer to as the systematic “greening of the body” (Sharp 2001), where even the most basic term transplantation inspires images of renewal and rebirth, rather than extraction, death, and decay. Thus, just as nature renews itself, so, too, does the human body, albeit through the assistance of sophisticated medical techniques. In contrast, all parties despise depictions of procurement as the mining of the body for its parts because of the horrific suggestion that this is a profit-making enterprise that preys on the bodies of the dead. Further, such commercial language simultaneously defies the purpose of NOTA, challenges the miraculous quality of body repair, and discredits the selfless love that enables grief-stricken kin to give to anonymous strangers. As we shall see, particularly pronounced is the current (though rapidly eroding) understanding that a precious gift economy drives transplantation's success, because newly acquired body parts enable organ recipients to undergo a radical transformation, often referred to as a “second life” or “rebirth.”
Bodies, Persons, and Things
Cadaveric donation inescapably places a heavy emotional toll on all concerned parties because of death's inevitable presence. Recipients, donor kin, and transplant and procurement professionals alike must make sense of transplantation as a lifesaving technique that nevertheless relies on donors' deaths and the surgical removal of their organs. For such epistemological constructions to work, all involved parties must embrace the legitimacy of brain death criteria, for head injury—be it from an auto accident, gunshot wound, or massive cerebral hemorrhage—is the overwhelming cause of organ donors' deaths in this country. Brain death is a relatively new medical construction, stemming initially from recommendations put forth in 1968 by the Ad Hoc Committee at Harvard Medical School (HMS and Beecher 1968; Ramsey 1968). The committee's recommendations shaped national policy and subsequent state-by-state legislation. Today medical historians and ethicists generally agree that the committee's actions were driven by the surgical desire for organ donors. As Stuart Youngner explains, discussions surrounding newly conceived brain death criteria “were quite rational” and were driven by two key factors: “to facilitate organ procurement and…to avoid legal concerns about turning off ventilators” (1996: 41).
Today organ transfer remains highly dependent on ventilator use (or what is referred to in other contexts as “life support”), because this now ubiquitous machine enables staff to maintain a donor in physiological stasis before, during, and after brain death is declared. Each breath of air forced into the lungs in turn stimulates the heart, which then sustains other vital organs by supplying them with a steady flow of oxygenated blood. Without the technological assistance of the ventilator, human tissue rapidly deteriorates, rendering the organs useless for transplant. When the body is denied a regular flow of oxygenated blood, a process known as warm ischemia sets in, which threatens the later graft survival of transplanted organs in recipients. Sepsis is yet another constant threat. Without medical intervention, human organs are quickly lost. In the United States various drugs are also administered to facilitate physiological stasis in the donor prior to procurement (Fox, DeVita, and Ritchie 1998; Hogle 1995b). It is important to understand that a (potential) donor remains connected to a ventilator both before and after brain death is declared, while consent is being acquired from kin, and during initial surgery stages, when the donor is anesthetized so that the organs can be removed without the body going into shock. Such practices are considered medically essential, yet they can trigger feelings of great unease among kin and professionals alike, who may struggle to accept brain death criteria as proof of absolute death (Sanner 1994; Sharp 2001; Youngner et al. 1989).
Within this ideological framework, the maintenance of brain dead donors is carefully orchestrated by a range of health professionals whose actions radically transform the organ donor into an extraordinary category of person. It is accepted as medical fact that brain dead patients will never regain consciousness, unlike cases involving patients who are comatose or in persistent vegetative states (Kaufman 2000, 2005). Further, because their level of brain damage is so severe, organ donors lack personhood as it is understood and valued in this culture; that is, brain dead patients have irretrievably lost their subjectivity and thus can no longer assert themselves in social contexts. This construction of personhood rests firmly on the medicalized assumption that the self is lodged in the brain: with severe and irreversible head trauma, we cease to be who we are, we are no longer human, and thus we cease to exist. The brain dead donor, then, is but a human shell, a body that functions physiologically but no longer thinks or senses the surrounding world. By medicolegal definition these donors are dead: whereas the ventilated brain-dead body appears to be alive to lay parties and health professionals alike, each breath taken is technologically dependent. The bodies of such donors maintain their natural coloring and remain warm to the touch, and they may even manifest what are understood as involuntary movements that result from residual nervous system activity. Such contradictions render them inherently strange.
Transplantable organs, too, are peculiar things. Because of their unusual origins, they are steeped in elaborate symbolic imagery. Their preciousness may lead to a displacement of the donor-as-person, once medical (or certainly procurement) attention is riveted on retrieving organs in time to save dying patients elsewhere. It is no wonder, then, that even after more than half a century of practice, organ transfer continues to be described simultaneously as a remarkable medical miracle, the giving of life, a legalized form of body commodification, and a medical process circumscribed by an unusual form of death.
Scarcity Anxiety
One of the great ironies of organ transfer is that its remarkable technological success has engendered a national crisis of supply and demand. Because the surgical transfer of organs strikes us as unmistakably wondrous, it has produced an ever-growing need for new surgical techniques, pharmaceuticals, and clinical subspecialties that then further perfect the medical ability to sustain life in this way. The intense desire to prolong life and cure disease has spawned as well an ever-increasing national list of patients for whom transplantation is deemed a basic medical right. Today the national list is an urgent topic of debate: heated discussions are spurred on by fears associated with the assumed shortage of transplantable organs and, thus, the dire need to increase the supply of willing donors. For more than a decade I have watched how proposals designed to enhance donation have shifted from casual, what-if scenarios to a pronounced level of alarm and even desperation. Thus, although concerns over supply and demand have always pervaded transplantation, the intensity of organ scarcity anxiety is new.
Significantly, much attention is given to the growing number of patients in need, set against either an assumed leveling or, at most, a sluggish climb in the annual number of donors. The urgency expressed in a recent story from the Boston Globe typifies current phrasing (the data and wording nearly always supplied by UNOS):
The waiting list for organs, now at about 82,000 people, keeps growing, and nothing has succeeded in significantly increasing the number of donations. Almost 60 percent of those on the list are expected to die waiting…. The transplant community has tried various initiatives…. But the gap keeps growing. Overall, the waiting list has been increasing by about 12 percent a year, while the number of brain-dead donors has been rising by under 3 percent, to about 6,000 a year. A recent study estimated that the number of potential donors each year is about 17,000. (Goldberg 2003)
The UNOS Web page has at times displayed a clock alongside an up-to-date report on the number of candidates on the national waiting list, recorded to the minute, stressing, too, that “for each person who receives a transplant, two more are added to that list.”10 As these examples illustrate, scarcity anxiety is focused squarely on the short supply of organs as transplant's great dilemma. In contrast, little is said about the responsibility the transplant industry bears in generating its own patients, a process that in turn increases the national demand for organs. Transplantation is in essence the capitalist's dream because the supply can never answer the pressing and ever-increasing social desire for these coveted goods.
When I first entered this field of research in 1991, innovative proposals designed to stave off the organ shortage were generally dismissed because they defied dominant assertions that linked bodily integrity to a respect for the dead. In short, professionals collectively expressed open disgust for blatant forms of body commodification, a stance guided in large part by the medical imperative to do no harm. Today, all involved parties embrace the need for ever more diligent public education campaigns; nevertheless, within the last five years financial incentives have surfaced as the most popularly proposed solutions. The momentum of this approach is evident in recent policy statements issued by the American Medical Association (AMA), which, in partnership with UNOS, now advocates investigating the viability of financial reward programs. Proposals include offering to donor kin a maximum ten-thousand-dollar tax credit, a funeral expense supplement, a charitable donation credit, direct payment, or a donor family medal of honor.11 A dominant assumption today, then, is that Americans will respond more quickly to monetary rewards than to more basic requests of altruism. Such proposals nevertheless require delicate semantic massaging (Richardson 1996) for fear that financial incentives will be interpreted as offering direct payment for human organs.
A decade later, these proposals have advanced to an entirely new level of understanding and debate, illustrated by recent testimony delivered by the AMA before the House Energy and Commerce Subcommittee (AMA 2003). Some of these new policy initiatives have moved to the pilot phase of experimentation. The state of Pennsylvania (which houses several of the nation's most prestigious transplant centers) provides a case in point. Its State Act 102, which became effective in March 1995, was initiated under the late governor Robert Casey, who himself was a liver and heart recipient. This legislation offers a comprehensive approach to public outreach and donor motivation, strategies that other states and federal agencies have duplicated. An earlier and controversial component proposed offering partial financial assistance to donor kin for funeral costs (Nathan 2000). Although this section of the act failed to win full support in the legislature, it evolved at one point into a proposal for a three-year pilot project designed to test the effectiveness of three thousand dollars in funeral assistance to donor kin.12 This sort of cash payment remains a highly experimental strategy (and one that to date has failed to evolve into official practice); this proposed component of Act 102 nevertheless marks an important watershed in policy responses to organ scarcity anxiety. More recently, Wisconsin passed legislation that reimburses living donors for travel expenses and lost wages, an example other states are certain to follow.
States have tried a variety of other approaches to increase organ donation within their own borders. Many currently use donor card campaigns as a means to raise donor awareness; the most common strategy entails offering this card when residents register for or renew a driver's license. This approach targets especially the nation's youth, thus capturing the attention of the very segment of the population that defines the ideal donor category. More specifically, these are young people whose organs are free from diseases associated with advanced age, and for whom the incidence of deaths from automobile, motorcycle, and bicycle accidents is particularly high (such accidents often result in head traumas and, thus, potentially, brain death).13 What most Americans fail to realize, however, is that the donor card has long served merely as a reflection of a desire, not the promise, to donate, for it is surviving kin who ultimately decide whether or not a loved one's organs will be offered for transplantation. In response, recently many states have also passed legislation that transforms the donor card into an advanced directive so that procurement staff can legally override the desires of surviving kin. Also, nearly all states have long-established laws that require hospital personnel to report all cases of potential brain death to their local procurement offices (but enforcing these laws is another matter entirely). In such instances, health care workers may fail to comply because they are unaware of the law, they do not embrace the definition of brain death, or they are too deeply disturbed by the idea of shifting their attention from keeping a patient alive to monitoring the physiological status of a brain dead donor.
In response to these sorts of limitations, some reformers now advocate for presumed consent laws: such legislation means that unless one has registered one's opposition to organ donation, one can be categorized automatically by hospital personnel as a donor, thus bypassing the objections of kin (AMA Council on Ethical and Judicial Affairs 1994; C. Cohen 1992). As evidence of the great potential of presumed consent, advocates point to Spain, where this approach is believed to have altered radically the size of the nation's donor pool.14 As the foregoing discussion makes clear, however, the United States presents significant barriers to such reforms, perhaps the most significant being that, unlike a country with socialized medical care, each of the fifty states passes its own legislation relevant to donor registration and brain death criteria. Thus, one can become an organ donor more rapidly in Pennsylvania (which houses several of the nation's largest transplant centers and among the most active organ procurement organizations [OPOs]) than in, say, Idaho (a predominantly rural state far less involved in organ transfer).15
A more mundane approach—mundane because it has required no specific legislation to bring it into effect—involves a loosening of medical criteria that allow a larger pool of dying hospitalized patients to qualify for donor status. In the context of my own research I have watched how procurement staff have shifted various medicalized boundaries so that those who might have been excluded ten years ago are now considered viable candidates for donation. For instance, in the early 1990s brain dead patients greater than seventy years of age were categorized as too old to donate, their organs considered too spent for safe reuse.16 A commonsense approach dictated, too, that it would be unfair to transplant into an already chronically ill person an old and thus inferior organ. By 1995, however, procurement professionals had begun to take aged donors more seriously, the argument being that an old organ was better than none at all. As Gretchen Reynolds explains, an ever-increasing demand for organs “has led transplant specialists to quietly begin to relax the standards of who can donate…[such that] the transplanting of what doctors refer to as ‘marginal' or ‘extended criteria' organs, organs that once would have been considered unusable, has increased considerably in the last several years” (2005: 38). Formerly, prisoners, for instance, were automatically excluded because of fears of incipient HIV and hepatitis infections, yet by the mid-1990s I witnessed discussions of their viability as donors, and the procurement staff whom I observed had begun to make special efforts to collect reliable social and medical histories on some dying prisoners. The new value placed on prisoners' bodies has been extended in turn to include arguments that those willing to donate kidneys might then receive shortened sentences or death-row clemency as a reward for this act of goodwill (Ayres 1998; Bartz 2003; Bell 1998; Guttmann 1992; cf. Waldby 2000).
An even more unsettling intervention within the realm of organ transfer involves a recent, albeit still limited, shift to obtaining organs from what are referred to as “non-heartbeating cadavers” or “non-heartbeating donors” (NHBDs), and the procedure itself as “donation after cardiac death” (DCD).17 This protocol, which has expanded the boundaries of death, concerns specifically those patients who are maintained on ventilators yet who fall outside the criteria for brain death, their failing health instead indicating signs of imminent cardiac arrest. Their potential donor status is dependent on there being a do not resuscitate (DNR) order entered in their medical chart. At the moment the heart stops beating (either on its own or after the patient is disconnected from a ventilator), medical staff make no attempt to restimulate it but, rather, rapidly prepare the patient-turned-donor for the surgical removal of his or her organs (DuBois 1999; Greenberg 2001; Institute of Medicine 1997). One of the most publicized cases to date involved fourteen-year-old Nicholas Breach, a child under the care of staff at Children's Hospital in Philadelphia, who suffered from an inoperable brain tumor and had declared his desire to be an organ donor. As Nick's family explained to a reporter for the New Yorker, in order for Nick “to become a donor, it was not enough for their son to die with his body more or less intact. He would have to have the right kind of death, with the systems in his body shutting down in a particular order” (Greenberg 2001: 36). The understanding was that his ultimate demise had to be carefully orchestrated if his organs were to remain viable for transplantation. During his final days at home, Nick's parents kept a death watch over him; when he stopped breathing, they initiated cardiopulmonary resuscitation (CPR) to maintain their son in a condition that would then allow hospital staff to deliver him to surgery. (Their efforts failed, however, and so only Nick's corneas could be retrieved; Greenberg 2003.) This procedure is moving rapidly from the experimental to the routine. As noted by Renee Fox, this unsettling approach to organ retrieval can transform the dying patient prematurely into a source of transplantable parts (Fox 1993; Fox, DeVita, and Ritchie 1998; cf. Lynn 1993). This new protocol also raises serious questions about the role that health care providers should play in facilitating death versus prolonging a patient's life (not to mention the ethical problems associated with slotting minors to NHBD status). Ultimately, this new protocol runs great risk of eroding an already shaky public trust in hospital care in this country.
Final examples of responses to scarcity anxiety involve new forms of medical research and experimentation. These ultimately rely on new hybrids of the human body that extend well beyond allotransplantation, or the melding of human-to-human bodies and parts. Briefly, these sorts of hybrids include the development of mechanical and organic alternatives, which could either help bridge the gap while patients await organs of human origin or sidestep the human organ donor entirely. Among the most celebrated examples is the development of several models of mechanical heart, including the Jarvik-7 in the 1980s and, currently, the AbioCor and other recent total artificial heart (TAH) prototypes (ABC 1996; Gil 1989; Hamilton 2001; Plough 1986; Rowland 2001). Currently such devices ensure only very short-term success rates for patients who, as little more than human guinea pigs, inevitably die from a cascading set of serious medical complications. In short, at present medical science is unable to duplicate the long-term workings of our sophisticated organs. Implantable devices that help drive a failing heart, most notably left ventricular assist devices (LVADs) currently bear more promise. Yet another highly experimental domain of research is the realm of xenotransplantation, or the creation of hybrid animal species (especially simian and porcine) that bear human genetic material and might one day define a source of organs for human use. The obstacles to creating such viable designer creatures are immense, and the research is plagued by the immunological dangers associated with cross-species infection. Such dangers have defined a focus for heated debates within this country and even more so in England (Bach, Ivinson, and Weeramantry 2001; Birmingham 1999; Butler 1999a, 1999b; Clark 1999; Vanderpool 1999). Nevertheless, within the transplant community, experimental mechanical and organic alternatives are imagined as potentially viable—and highly profitable—solutions to the current scarcity of organs (Maeder and Ross 2002). The desire for alternatives that would eliminate the problem of organ scarcity is so strong in some professional quarters that discussions may skirt ethical and other inherent dangers associated with radical proposals.
Natural and Denatured Bodies
As noted earlier, the miracle of organ transfer rests largely on surgical prowess and technological sophistication. In this sense, the range of medical expertise associated with the retrieval, preservation, and replacement of human organs represents the zenith of biomedical accomplishment in a nation that celebrates biotechnological solutions to human health problems. When framed by this dominant cultural ethos, the transfer of human parts between disparate bodies is conceived of as a natural progression within medicine. A new, experimental procedure may quickly become routine, spreading in practice from one surgeon or hospital unit to others throughout the country (and beyond) once described in published form or demonstrated with slides and videos at professional conferences.
If innovation defines a natural progression of knowledge and technique in transplant medicine, then the bodies of organ donors and transplant recipients become naturalized through this process, too. Much is made over this phenomenon within the realm of organ transfer, and this understanding is expressed through several rhetorical forms. Common assertions are that there is nothing odd, strange, or unnatural about organ transfer as a sociomedical process; nor in the ways that organs are retrieved from the dead; nor even in the fact that a surgeon can remove a patient's heart, support the body temporarily on a bypass device, and then restart a new heart once it has been properly implanted in the patient's chest (and all this without killing the patient in the process).
From the point of view of a range of lay parties—and even among recipients—the medical miracle of organ transfer is a strange act indeed. The strange and unnatural qualities of organ transfer together define a troublesome and seemingly unstoppable undercurrent. Most pronounced is the sense that the recipient body is a hybrid one because its viability as a living organism relies on its being made up of parts from at least two human beings. In contrast, a widespread understanding within anthropology and other social sciences is that hybridization is part and parcel of human existence, especially within postindustrial contexts. As Van Wolputte explains, “We are all Creoles of sorts: hybrid, divided, polyphonic, and parodic—a pastiche of our Selves. The contemporary body-self is fragmentary, often incoherent and inconsistent, precisely because it arises from contradictory and paradoxical experiences, social tensions, and conflicts” (2004: 263; cf. Haraway 1989, 1991; Latour 1993). Within the highly medicalized realm of organ transfer, however, talk of a multiple, disparate, or fragmented self is evidence of pathological thinking and requires therapeutic intervention. Lurking in the darker corners, it seems, is the specter of Frankenstein's monster (J. Cohen 1996; Shildrick 2002). Transplant recipients who openly express the sense that another person dwells within them may well acquire medical labels that draw on monstrous imagery, such as “Frankenstein syndrome” (Beidel 1987; Rollin 1995). In an effort to quell the potential unease associated with the hybrid body, transplant professionals regularly describe body parts as inert objects. In this way, the surgeon's craft centers on the repair of a complex and fragile machine. Further, when members of the lay public express unease or more blatant distaste for organ transfer, such sentiments are considered evidence of superstitious or misguided religious thoughts that can be redirected especially by procurement staff through aggressive public education campaigns.
Regardless of this professional stance, both organ recipients and donor kin regularly consider and even embrace the idea that the recipient body is a hybrid one. Although their opinions are generally voiced out of earshot of professionals, many recipients understand their new lives as dependent on the workings of parts derived from others. In this sense, both the dead donor and once ailing recipient are rejuvenated through the melding of their bodies. Donor kin may similarly embrace this idea, understanding the deceased donor as living on in the bodies of recipients. At work here, then, is an altogether different idea of the composite human form, now redefined as a gestalt composed of once disparate human parts. Such responses, rather than being pathological, naturalize the recipient body in an altogether different sense. In essence, by “embodying the monster” (Shildrick 2002), an action so feared in professional circles, organ recipients naturalize hybridity.
A key component of this process of naturalization is the manner in which numerous donor kin and recipients seek out each other, transforming one another from anonymous strangers to intimate friends and even kin. Socialization in this sense similarly defies dominant professional premises that assert that transplanted organs are inert and, thus, denaturalized parts incapable of harboring traces of their once human origins. This resocialization of the deceased donor (now understood as an integral part of the living recipient) also flies in the face of the seemingly inevitable commodification of bodies-as-parts within the transplant industry. Transplanted organs are perceived instead as fragments of beloved individuals who live on within and grant new life to others.
The Corporate Body
A final premise crucial to this study involves professional concerns over the corporate restructuring of organ transfer. This shift characterizes medicine more generally in the United States, yet, as described earlier, in the realm of organ transfer it is driven especially by anxieties over organ scarcity. Amid this shift, involved professionals may express distress over changing labor requirements and the restructuring of the workplace itself. As one longtime procurement professional lamented, her agency began twenty years ago as a mere “shoe box operation,” where a small collective of employees worked elbow to elbow in a cramped, one-room office, sharing all duties. Today this same agency is housed in an impressive suite with a large and highly specialized staff who are divided into a range of divisions. Such developments are hardly confined to the transplant industry: Lorna Rhodes (1991), for instance, recorded similar sentiments among mental health care specialists who began as community activists working the streets on foot or from the back of a van.
Of special concern to transplant and procurement professionals is the constant demand from superiors to increase the number of successful outcomes. A team of transplant surgeons can qualify for transplant unit status under hospital and UNOS guidelines only by performing a minimum number of surgeries per year; even greater numbers are required to merit additional funds and staffing necessary for experimental research. Throughout the nation, hospitals proclaim their success through the actual number of transplant surgeries they perform, and certain organs, such as hearts and livers, bear more cultural capital than do others, such as kidneys. Procurement specialists in turn are under great pressure to increase their number of successful donations. It is not enough, however, simply to identify donors or acquire consent; only the actual number of organs transplanted in the end matters. As frustrated procurement staff explain, how can they predetermine the quantity of organs they acquire when the supply is beyond their control? Such demands inevitably facilitate the rapid dehumanization of patients and undermine staff morale. Under the worst circumstances, sloppy work or employee corruption may result.18
Such developments clearly generate serious dilemmas. As organ transplantation shifts to the corporate model, organ transfer is driven increasingly by market forces that discourage health professionals' compassionate and courageous acts. This in turn affects the social value of the potential donor, who may be transformed even more rapidly from a dying patient to a body capable of supplying society with highly coveted, reusable parts.
The Paradoxical Premises of Organ Transfer
In the preceding discussion, I do not mean to imply that the world of organ transfer is jaded and callous. Without exception, all participants who have assisted me with my research care deeply about the well-being of hospitalized patients, regardless of whether they are potential donors or organ recipients. Nevertheless, as transplant and procurement professionals succumb to demands for more donations, they risk undermining even further an already shaky public trust in American medical practices. Organ transfer is especially vulnerable because it must always struggle against public perceptions that this highly specialized branch of medicine preys on the bodies of dying patients. Nevertheless, the current demands associated with organ transfer may drive professionals to overlook the moral dangers of their work. To underscore the complexity of such dangers, I wish to conclude with a review of how the paradoxes just described intersect with one another and define an ethos inherent in organ transfer in America, one that guides the thoughts and actions of both professional and lay participants.
For half a century, although transplant medicine has borne the aura of the miraculous, its success has been dependent on a highly technocratic approach to healing. As noted, transplantation is driven by increasingly sophisticated diagnostic, surgical, pharmaceutical, and ultimately life-sustaining technologies that potentially dehumanize both transplant patients and potential donors as little more than medicalized cyborgs. From a purely utilitarian perspective, transplant medicine is extraordinarily expensive by virtue of its technological dependency. Although veiled in a complex array of euphemistic constructions, organ transfer and, in turn, the donor body are sites of lucrative medical practices sustained by an ever-expanding demand for technological expertise.
Set against this “technological imperative” (Davis-Floyd 1994) of transplant medicine, the donor body emerges as a site mired in contradictions. Among the most troubling is the denial of the dehumanizing force of organ transfer. Whereas a host of tissues is readily bought and sold, long-standing legislation, spearheaded by the National Organ Transplant Act of 1984, renders it illegal specifically to market transplantable organs. In response, organ transfer relies heavily on euphemistic terms that deny body commodification: organs are not bought or sold but donated; through transactions steeped in the language of a gift economy, organs are gifts offered to needy patients through great acts of kindness by anonymous Samaritans. Nevertheless, transplant patients (or, most frequently, their insurers) pay enormous sums for their surgeries; and procurement offices, though nonprofit in status, are hardly driven by volunteer labor. The symbolic rhetoric of organ transfer insists that transplantable human organs are extraordinarily precious things, yet their value is understood in radically different ways by different categories of involved parties. Whereas official rhetoric insists that organs are gifts of life, some still consider them as little more than replaceable parts, and others view them as harboring the lost souls of the dead. This array of competing constructions arises in response to the contradictory messages professionals supply to recipients versus donor kin. This ultimately leads professionals to block communication between these two sets of parties because their encounters would uncover the depth of ideological disjunction intrinsic to their work.
An even more troubling aspect of organ transfer's ideological underpinnings involves the necessity of embracing brain death criteria as evidence of absolute death. Organ transfer as a medical reality is bolstered by life-sustaining technologies, for without the respiratory ventilator, for instance, hospital and procurement staff could not maintain potential donors prior to and during the surgical removal of their organs. All involved parties must accept that these donor-patients are dead, even though they are warm to the touch, breathe (albeit with technological assistance), and can move. As we shall see, publicly expressed acceptance among all sets of involved parties may be contradicted by their more private musings over brain death criteria.
The growing anxiety over organ scarcity problematizes the assumed miraculous qualities of this unusual gift economy of death. As noted, responses now under serious consideration call largely for financial incentives for organ donation, a development that only further commodifies organs and the donor body, reducing these “precious things” to little more than coveted goods that can be acquired for a price from surviving kin. This bald-faced approach threatens the very stability of the gift economy, the linchpin of organ transfer's success to date. Other radical solutions undermine the sanctity of the medical imperative to do no harm through the NHBD protocol, or through radical forms of mechanical and xenographic experimentation. In essence, then, the miracle of transplantation may quickly dissolve into a dollar-driven medical nightmare.
Finally, the ever-increasing corporate structure of organ transfer—driven by the pairing of medical success and organ scarcity anxiety—marks the further dehumanization of its practices. Procurement and transplant professionals alike express deep frustration over demands from their superiors that they acquire, transfer, and transplant more organs every year. In some centers, staff are now confronted with monthly and annual quotas, and their inability to meet these puts their own jobs at risk. Of even greater concern are the dangers associated with corporate greed: one need only consider the science fiction tales that loom in the collective American consciousness to grasp the tenuousness of public faith in organ transfer as a medical miracle.
Anthropology and Bioethics
Against this set of paradoxical premises and accompanying anxieties, bio-ethicists provide an important and growing set of critical voices. Of particular interest to me is the manner in which their own critiques have shifted over the course of the last decade in tandem with growing concerns in transplant medicine. Commentaries in the early 1990s frequently bore the tone of the playful gadfly, notably expressed, for instance, in Arthur Caplan's book title If I Were a Rich Man Could I Buy a Pancreas? (1992). Most ethicists assumed a relativist stance, seeking primarily to expose conflicts inherent in competing positions, thus encouraging open debate among involved parties. Yet another dominant approach involved labeling or categorizing various arguments: for instance, ethicists deliberated whether calls for further commodification fit utilitarian or patient autonomy paradigms. Within the past three or so years, however, I have observed that ethicists have become more brazen in their critiques, a shift generated in large part by current proposals that so blatantly commodify the body. Thus, Caplan himself is quoted in the Wall Street Journal as stating that the market demand in human body parts “has created a kind of eBay of the body.”19 Likewise, Jeffrey Kahn acknowledges that the euphemistic language of organ transfer is merely “a semantic difference…. What's really being sold isn't the time and energy, but the material itself” (Saranow 2003).
In response, bioethicists and anthropologists can form a compelling partnership; of special interest to me are the moments of disjunction exposed by a merging of ethical and ethnographic thinking.20 As anthropologists have long known, human actions and words may defy what a society's members claim to do or what they embrace as cultural truths. In the medical realm of transplantation, this is especially evident in the language employed in public versus private venues for speaking about reusable organs, death, and donors' bodies. The ultimate questions generated by such disjunction are: What are the perceived (and hidden) ethical ramifications of transplant's technocratic miracle? Of the reworking of the donor body? Of the denial of body commodification? Of redefinitions of death? Of the unending demands placed on involved professionals in response to anxieties over organ scarcity? As I shall illustrate throughout this book, these questions bear heavily on the medical imperative to prevent physical suffering, prolong life, and preserve the sanctity of the body when working against the demands of technocratic and capitalist medical practices (Davis-Floyd 1994; Davis-Floyd and St. John 1998; Lock, Young, and Cambrosio 2000; Zola 1978). Organ transfer is guided by its own particular ethos, within which the most troubling elements involve an ever-increasing desire for human body parts. As transplant medicine embraces more blatant forms of body commodification, it risks permanent association in the public mind with avaricious corporate willingness to plunder the helpless bodies of the dead and dying.
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 how donor kin grieve lost donors: as I will argue, the construction of the transmigrated donor soul can initiate a period of ceaseless mourning.
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 Foundation, where organ recipients from around the country compete in various athletic events, promoting a public image of transplant's medical success. Here I interviewed another eight transplant patients from around the country. I also attended (and, over time, was invited to make presentations at) three national transplant conferences.24 At these venues I also learned more of the regional differences in medical practices and transplant ideology, and I was able to expand my contacts beyond the Midwest. In subsequent years I conducted another dozen interviews with recipients and professionals from a wide range of national locations. I also ventured to Richmond, Virginia, to visit UNOS, the organization that oversees the distribution of organs in this country. Here I interviewed two staff members and witnessed firsthand how they reported and managed donor cases and how they allocated organs locally, regionally, and nationally. Finally, I traveled to Washington, D.C., on three occasions specifically to consult with a half dozen health professionals and a small cohort of transplant recipients who are advocates for minority transplant needs.
The second phase (1994-96) began when I moved to New York City to assume my current teaching post at Barnard College. As a result of the sporadic attention I gave to donation in the Midwest, I had become sensitized to the professional split between those who worked with transplant recipients versus organ donor kin. This split became especially apparent to me when I was invited to give a presentation at a national meeting: as I soon learned, the membership was so divided that transplant and procurement professionals typically sat on opposite sides of the aisle when attending an event in the main conference hall. Especially striking was the fact that procurement specialists were regarded as a necessary evil of sorts among members from the hospital-based transplant community; moreover, it was not unusual for them to self-identify as “vultures” and “ambulance chasers.” Given the obvious privileging of transplant medicine, I was troubled by the absence of descriptions of procurement activities in the literature, the compelling work of Linda Hogle (1995a, 1995b) soon emerging as a remarkable exception.
My research during this period (and beyond) focused on the lives of professionals employed in three East Coast OPOs. Thanks to the grace and trust of the managing staff of one office, I was allowed to track the comings and goings of staff, shadowing them as they followed donor cases; for nearly a year (February-December 1995), I attended monthly staff meetings at which all donor cases were systematically discussed. From early 1995 until early 1996, I interviewed thirteen employees; half of these involved second and sometimes third or fourth follow-up interviews. Between 1999 and 2004, I interviewed five additional staff and conducted follow-up interviews with several from the original cohort. To test for regional differences in attitudes, training, and work activities, I paid on-site visits to an additional seven OPOs, interviewing staff based in the East, South, West, Southwest, Central Mountain region, and Midwest. Complementary data were generated through additional experiences at conferences and other transplant-related events where I encountered staff from an additional five OPOs representative of these same national regions. In short, over the course of fifteen years, I have interviewed and worked among staff from fourteen separate OPOs. Of key concern to me have been professionally guided understandings of brain death and how OPO employees think and talk about donor bodies, donor kin, and the social ramifications of organ procurement.
Early in my research I became aware of the ubiquitousness of donor memorial events, and so during this second phase of my work I began attending these on a regular basis. (Three separate organizations in New York City host their own large-scale annual event.) These memorials are staged primarily for either organ recipients or donor kin, offering attendees a means for honoring donors (and their kin). Although a primary goal is to offer a safe and open context in which to grieve, organizers are nevertheless fearful of excessive emotional outbursts among participants. As a result, these events are tightly orchestrated by health professionals and administrative staff. Typically, too, they are rife with symbolic imagery that emphasizes transplantation's life-giving mission: often they involve the planting of trees in donor gardens located on hospital grounds or in public parks. Regular memorial services are also held in local churches or cathedrals in some parts of the country, as are elaborate banquets with a host of high-profile speakers. Given the Christian overtones of many of these events (and related imagery in the transplant literature), I became intrigued by what might be left unsaid about how various faiths understood the sanctity of the body and its disruption by organ procurement. To date I have attended fourteen of these memorial events (three in Indianapolis, eight in New York City, one in Washington, D.C., and two at separate Transplant Olympic events), as well as two Transplant Walks staged in New York City, all organized to raise public awareness about organ donation. Throughout much of my work during this second phase, I was greatly assisted by Sarah Muir, who conducted interviews with religious practitioners in New York City as well as with morticians who prepare the dead from an array of faiths for burial. In addition to my own participation in the arenas described here, Sarah regularly attended two sets of organ recipient support groups whose members were of radically different ethnic, religious, and class backgrounds.
Each time I attended donor memorial events in the early 1990s, I was struck by the absence of donor kin; or, if they attended, I perceived deliberate attempts to silence them or script their presentations. Early in the course of my research I voiced this concern to a woman who had organized such an event in Indianapolis. Rather than rebuking me, she explained in a hushed voice that she herself had been dissuaded by hospital staff from including donor kin as speakers. I wanted to know why, and, thus, I eventually turned my attention to this question during the third phase of my research (19962001). This period focused on the long-term effects that organ donation has on the lives of surviving donor kin, a social category about which, again, very little has been written. Several key concerns became important here. How might donor kin's perspectives on death differ from those expressed by recipients and procurement specialists? How did surviving kin respond to professionally orchestrated memorials? How did they mourn their dead in private arenas? What were their reactions to the insistence that they remain anonymous to organ recipients? Under what circumstances might they defy taboos on communication with recipients? At this point I became aware of subversive memorial sites where donor kin could speak publicly of donors and their deaths devoid of professional control. Among the most visible was the production of a national donor quilt (one modeled after the AIDS quilt). My student assistant Marcy Brink also thankfully drew my attention to virtual cemeteries located on the World Wide Web; her initial analysis of these Web entries helped to stimulate my later thoughts on their significance.
At this time I conducted on-site observations and interviews with the founder and three staff members at a recently formed donor advocacy group; these individuals also allowed me to consult their files and make use of material generated from a nationwide survey that targeted donor kin. This work was further enhanced by the adroit skills of graduate student Katie Kilroy-Marac, who was allowed to join this group as an intern as part of my ongoing research. Among the most striking accomplishments of this group was their insistence that the Transplant Olympics become a more inclusive event that welcomed donor kin. In summer 1998, Katie and I attended yet another
Transplant Olympics, this time in Columbus, Ohio, where she spent much of her time working alongside staff who coordinated donor kin activities (and solving myriad logistical and individual participants' problems). In addition to attending six events and workshops designed specifically for donor kin, I conducted a series of open-ended interviews with fifteen individual donor kin, two family members of recipients, and two paired (that is, simultaneous) interviews, where a donor family member and a recipient spoke with me together about the history of their relationship. At the invitation of the donor advocacy group, Katie and I also ran a focus group of fourteen, its membership restricted to donor kin who had met their respective organ recipients. I conducted additional interviews with four donor kin at various conferences or in the privacy of their own homes; these data are complemented by approximately ten additional personal stories I have heard over the years as recounted by speakers at various transplant events.
Finally, the fourth phase of my research (2002-present) focuses on the relevance of organ scarcity anxiety in shaping a range of experimental realms of organ transplant medicine. A major concern involves the search for alternative sources of transplantable parts, which currently include mechanical devices, animal parts, and organs grown from cell cultures (sometimes referred to as “organogenesis”). Within this book I will focus specifically 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.
