Not Just Urban Legend

Diflo became an outspoken advocate for reform several years ago, when he discovered that, rather than risk dying on the U.S. wait list, many of his wealthier dialysis patients had their transplants done in China. There they could purchase the kidneys of executed prisoners. In India, Lawrence Cohen, another UC Berkeley anthropologist, found that women were being forced by their husbands to sell organs to foreign buyers in order to contribute to the family's income, or to provide for the dowry of a daughter. But while the WHO estimates that organ-trafficking networks are widespread and growing, it says that reliable data are almost impossible to come by. "Nancy has done truly courageous work, literally risking her life to expose these networks," says Delmonico. "But anecdotes are impossible to quantify."

Scheper-Hughes acknowledges that in gathering these anecdotes she has frequently bumped up against the ethical boundaries of her own profession. While UC Berkeley (which funds most of her work) granted special permission for her to go undercover, she still takes heat from colleagues: misrepresenting oneself to research subjects violates a cardinal rule of academic research. "I expect my methods to be met with criticism," she says. "But being an anthropologist should not mean being a bystander to crimes against the vulnerable."

While Rosen has fared well since the surgery—he recovered quickly, used the money to travel and stays in touch with his kidney recipient via Facebook—most of the donors Scheper-Hughes and her colleagues have spoken with are not so lucky. Studies show that the health risks posed by donating a kidney are negligible, but those studies were all done in developed countries. "Recovery from surgery is much more difficult when you don't have clean water or decent food," says Scheper-Hughes. And research on the long-term effects of organ donation—in any country—is all but nonexistent.

Last may, Scheper-Hughes once again found herself sitting across from a group of transplant surgeons. This time they were not as incredulous. More than 100 of them had come from around the world to Istanbul for a global conference on organ trafficking. Together, they wrote and signed the Declaration of Istanbul, an international agreement vowing to stop the commodification of human organs. But unless their document is followed by action, it will be no match for the thriving organ market. Even as illegal trade is exposed, a roster of Web sites promising to match desperate dialysis patients with altruistic strangers continues to proliferate unchecked. These sites have some surgeons worried. "We have no way to tell if money is changing hands or not," says Diflo. "People who need transplants end up trying to sell themselves to potential donors, saying, 'I have a nice family, I go to church,' etc. Is that really how we want to allocate organs?"

Maybe not. But in the United States, the average wait time for a kidney is expected to increase to 10 years by 2010. Most dialysis patients die in half that time, and the desperate don't always play by the rules.

© 2009