By Emily Harrison Weir
Illustration by Patricia Czepiel Hayes '84

Ask Americans if they favor organ transplants, and as many as 90 percent will say yes. But only about 19,000 organs were available last year for the 37,000 patients on the national transplant waiting list. If people agree in principle, why do they shy away in practice, despite obvious need and massive campaigns to encourage organ donation?

Associate professor Don Joralemon has been considering this question from an
anthropologist's point of view. "Americans say things like 'The heart's just a pump,' but our actions contradict that belief," he says. "When I read the medical literature on transplantation, I found we don't have as scientifically neutral a view of the body as we sometimes pretend." Joralemon says something in our culture-and in many others worldwide-binds our sense of self closely to our physical selves.

The biological boundary between your body and everyone else's is fixed and permanent. Transplant recipients' bodies will always attack donor tissue as foreign matter unless strong anti-rejection drugs suppress this reaction. Joralemon wonders if efforts to convince people to "recycle" their organs are the cultural equivalents of these anti-rejection drugs, attempting to suppress a widespread belief that sharing body parts might mean losing part of your spirit, too.

He hasn't reached a conclusion yet, but preliminary cross-cultural evidence indicates that transplants may violate a basic human bond between body and spirit. Consider the cultural resistance to transplantation embedded in these disparate situations:

• In cultures around the world, people treat their dead as if important aspects of the person still cling to the body.
• Despite "presumed consent" laws giving European doctors permission to reuse organs unless relatives of the deceased object, there's recently been a significant drop in organ donations there.
• Japanese citizens are debating a "brain death" law allowing doctors to remove organs from brain-dead (but still breathing) bodies. Some see this practice as incompatible with Japanese cultural traditions of caring for the recently dead (as well as for long-dead ancestors).
• Body and self are considered integral to each other in virtually every society, although different societies locate the spirit's "home" in different body parts. For Americans, the heart is central, while New Guinean and French cultures stress the liver's importance, for example.
• Rumors persist throughout the Third World of strangers stealing children off the streets and selling their organs for transplantation into First World patients.
• Transplant recipients frequently have trouble integrating a new organ-a piece of someone else's body-into their psychological identity. Some believe that a donor's personal characteristics, such as age, gender and race, are transplanted along with the organ.
• Even in societies that view separating body from spirit as possible and even beneficial, "there's a very strong linkage between people's physical entity and how people conceive of themselves," says Joralemon.
• When asked by pollsters if they are willing to donate specific organs, as many as 43 percent of people polled say they "aren't sure" or "don't know." This suggests that the "up to 90 percent of Americans support donation" statistic may be misleading.

These examples support Joralemon's hunch that the public isn't as ready to accept transplantation as widely cited polling data implies. "The conflict emerges from unresolved tension between two Western views," he explains: the idea of the body as a "thing" sustained by medical technology and the idea of the body as an inextricable part of the self.

Joralemon started thinking about resistance to transplantation as a cultural phenomenon nearly three decades ago. "I remember clearly when Christiaan Barnard performed the first heart transplant and when Barney Clark got the first mechanical heart," he says. "Those dramatic moments struck me as even more significant culturally than as the medical miracles they were presented to be. And I've always been interested in the degree to which medical technology runs faster than our culture's ability to integrate it."

Joralemon is also studying how the medical community measures transplant recipients' quality of life. With organs in short supply and some operations costing several hundred thousand dollars each, "it's not enough just to count patients' years of life," he explains. "You also must prove that patients thrive." To evaluate this, recipients typically fill out standardized questionnaires, often in the hospital where the transplant was performed. Joralemon says this is only one of many reasons that current assessments yield skewed results, which are reflected in the medical literature's "extraordinarily rosy picture of the outcome of organ transplantation."

He believes a better way to study something as complex and culturally variable as "quality of life" is through long-term, multiple-visit interviews conducted by researchers not affiliated with patients' medical care-such asanthropologists. This approach, according to Joralemon, can provide "the deeply textured information about the roller coaster of recipients' lives" necessary to inform public-policy decisions and to help prospective organ recipients weigh the pros and cons of the surgery and its aftermath.

Sophomore Kim Fujinaga became Joralemon's valued assistant in this research. Working side by side, they gathered and analyzed the relevant literature, and Fujinaga critiqued medical studies' experimental methods and prepared a graphic presentation of data that Joralemon used at a professional meeting. He has already conducted several extensive quality-of-life interviews with transplant recipients and hopes to do so on a larger scale after finishing some theoretical work in this emerging field of medical anthropology.

While it's still early in his research, Joralemon says, "Transplantation is not as simple an issue as the organ transplant community would like us to believe. In fact, there's a great deal of cultural resistance all around the world. Whatever our personal position on transplantation might be, we at least need to recognize this is happening."