Body Trades
Much has been written on the history of transplantation in the United States, and thus I mention only the significant legislative strides that have rendered procurement a medical reality in this country.3 The advent of American transplant medicine is frequently traced to the first successful attempts at kidney transfer between identical twins in 1954. Many Americans (particularly if they are in their late forties or older) are most familiar with the highly publicized story involving South African surgeon Christiaan Barnard, who in 1967 removed a healthy heart from the body of Denise Darvall and transplanted it in Louis Washkansky, who survived for eighteen days. Within the United States, the growing desire to harvest organs from patients sustained on ventilators provided the impetus for the Harvard Ad Hoc Committee, which argued in 1968 for “irreversible coma” as a new category of death. The committee's recommendations formed the basis for the Uniform Anatomical Gift Act of 1968, which stipulated how anatomical gifts—including transplantable organs and whole bodies bound for medical research—could be offered either by oneself or one's surviving kin. As such, the act simultaneously sanctioned brain death criteria and early donor campaigns and criminalized the selling of human organs for profit.4
The development and marketing of the potent immunosuppressant cyclosporine by the early 1980s subsequently ensured transplant's success, enabling patients to stave off the short-and long-term effects of graft rejection.5 Yet, again, legislation trailed medical accomplishment. In 1982, Congress passed the Uniform Determination of Death Act, whose central purpose was to standardize the “proliferation” (CUSL 1980) of criteria found in an array of states' statutes; of particular importance was the goal to define brain death in legal terms. By 1987 this act was adopted in some form in nearly all states. The regulatory aspects of organ transfer were defined in 1984 by yet another key piece of legislation, the National Organ Transplantation Act (NOTA). Organs were to be distributed through the Organ Procurement and Transplant Network (OPTN), a contract that has been managed since 1986 by the United Network for Organ Sharing (UNOS), which is currently based in Richmond, Virginia.
Today, nearly all states—and even most major cities—can boast a transplant unit stationed within at least one of their largest hospitals. Currently, all such units are linked to a network of fifty-nine OPOs throughout the United States and Puerto Rico.6 These are grouped, in turn, into eleven geographic regions. UNOS, as a federally funded regulatory agency, oversees the activities of the nation's OPOs, maintaining waiting lists and establishing national guidelines designed to ensure that organs are distributed fairly throughout the country. The logistics of placement are complex; briefly, as explained by the Association of Organ Procurement Organizations (AOPO), a set of predetermined guidelines is based, for instance, on patients' levels of medical urgency, length of time on the relevant waiting list, body and/or organ size, and blood type.7 Organ transfer in the United States has taken on an international character, too: some patients hail from other nations; organs are at times procured from noncitizens who die in U.S. hospitals; and procured tissues and, to a lesser extent, transplantable organs may sometimes travel to other countries.
There is a national trade in transplantable human organs in the United States and, once procured, organs are most certainly transformed into precious commodities. Although buying and selling solid human organs is illegal, transplant medicine is among the most lucrative forms of medical practice within this country.8 The movements of transplantable organs, as precious goods, are tracked with extraordinary care. Although most organs stay within the region in which they were procured, UNOS ultimately dictates their placement. Thus, if UNOS determines that the best match for a heart procured from a midwestern region is a patient based in a Southern California hospital, the midwestern OPO cannot override this decision. Southern California, however, then assumes the debt of a heart that must later be repaid to the region of origin. OPOs, with assistance from UNOS, tally such organ exchanges and debts with great care. In short, organ transfer defines a peculiar segment of interstate trade in America.
The rhetoric of organ transfer serves to deny and even disguise the fact that transplantable organs are highly valued medical commodities. Surviving kin receive no financial recompense for the organs they “donate” as “gifts of life.” Nevertheless, all parties understand on some level that organ transfer is driven in part by the desire for profit. In the words of a longstanding director of a midwestern OPO, “Health care is a business…let's not fool ourselves.” Although they are nonprofit organizations, OPOs certainly charge for their services (at the very least this covers donor care prior to, during, and following procurement). These costs are then passed on to transplant recipients, who are also billed for their respective surgeries, as well as for pre-and postoperative care. It is a public myth, however, that transplants are an option available only to the nation's wealthiest individuals. Few people in this country can afford to pay for a transplant out of pocket; nevertheless, with the assistance of savvy transplant social workers, patients from a wide range of backgrounds acquire support either through employer insurance plans (if not their own, then that of a parent or spouse), or by liquidating their assets, or by qualifying for disability and Medicaid coverage. The most destitute patients sometimes acquire support from private foundations or even from their own surgeons, who may dip into pools of research funds to help improve or save the lives of their most financially desperate patients.
Donor Histories
The human body is a tremendously profitable source of reusable parts. Together with the major organs (heart, liver, lungs, kidneys, pancreas, and small intestine), a range of others, categorized as tissues, include approximately fifty regularly salvaged body parts.9 Surviving donor kin quickly become aware of the complexity of this economy of the body, for by law they must work their way through a complicated checklist of reusable parts once they have consented to donation. The process of donation, however, is far more complicated than the mere act of completing and signing a consent form. Given that the majority of my readers will be unfamiliar with the process, I provide an overview here.
The vast majority of organ donors' deaths result from head traumas that are sudden and thus unexpected, and many are violent as well. Primary causes include motor vehicle accidents (car or motorcycle collisions, or cyclists or pedestrians being struck by moving vehicles); gunshot wounds to the head (ranging from the misuse of firearms by children to intended acts of violence between teenagers or adults); suicides (involving a handgun, hanging, or carbon monoxide poisoning from car exhaust fumes); and severe brain hemorrhages (in adults and children). Whereas in the past age limits were set on donor eligibility, today virtually anyone—ranging from newborns to octogenarians—might qualify for donor status. Nevertheless, a widespread understanding within this specialized medical community is that by far the best donors are young people because they are assumed to be healthier (that is, less disease-ridden) than older adults. At work here, too, is the understanding that the deaths of children are especially tragic, and so it is most important that some goodness emerge from the horror of their sudden loss. Fifty years ago it would have been impossible to save—or salvage—brain dead patients. Once identified as potential donors, the severely brain damaged may later be disqualified for a host of reasons that can include (but are not limited to) failure to meet brain death criteria, detected infections, organ damage, or medical histories marked by certain cancers. Currently, one becomes a donor in the United States if next of kin grant consent. Even in those states where donor cards are legally defined as a form of advanced directive (a recent trend I will raise again later), procurement staff remain reluctant to take organs in direct opposition to kin. At the onset of my research, patients were automatically disqualified as donors if they were even suspected of having HIV, and later hepatitis B and C virus, infections. Advancements in immunosuppression, on the one hand, and treatments for AIDS especially, on the other, have led to a recent shift in accepting organs from such patients for transplantation in others who bear similar infections. These and other “marginal” donors now define an increasingly common source of “extended criteria” organs (Reynolds 2005) as surgeons, driven by organ scarcity anxiety, seek transplantable parts for growing numbers of patients in need. I will address the clinical and social relevance of “extended criteria” later in this chapter and again in chapter