What do you get when you cross major advances in medical technology, specifically in organ transplantation, with worldwide poverty and wealth disparity? The temptation to use “the body as a bank book,” as David Cronenberg narrates in the new HBO documentary Tales From the Organ Trade.
It's estimated that some 10,000 people worldwide sell their organs on the black market each year, with deals brokered by international crime syndicates and carried out in private clinics by rogue surgeons. The United Nations and Interpol consider the practice a form of trafficking, coercive by definition—that is, a cash offer negates any consent or altruism the seller might claim.
But Organ Trade’s director, Ric Esther Bienstock, sought to tell a more nuanced narrative. “They are coerced by their own poverty, yes. But I think it's patronizing to say the poor can't give informed consent," she says. "I saw people who really benefited from having done this.” Some prominent physicians and scholars agree and go one step further, advocating a government-regulated system of what they call “incentivized” or “compensated donation,” which they argue will both shorten waiting lists and protect sellers abroad from exploitation.
"We know from experience in multiple countries that the moment you pay people, the altruistic people stop donating—because they can get the paid donors to do it."
In the film, Bienstock and her crew visit the Philippines, Moldova, Turkey, and Kosovo to talk to the sellers, all of them still poor, most of whom speak of their decision with cavalier recall. In the Philippines, she finds an entire village of men who line up to pose with their identical scars and talk about the motorbikes, washing machines, and alcohol they were able to purchase with payments of around $1,500 (which many were told would be higher). She also scores an interview with a fugitive surgeon.
On the other side of this illicit trade are the gravely ill “haves,” the Americans, Canadians, and Europeans of varying means who spend years on waiting lists, enduring dialysis treatments that leave scars of their own. If you've never thought much about what dialysis is or does, this film will be an eye opener. One couple wires $100,000 to a broker for an illegal transplant.
For the camp promoting an aboveboard organ market, the sick and wait-listed are victims of an “organ shortage” fueled by expanded medical capabilities, a growing epidemic fueled by obesity and diabetes—100,000 are waiting for kidneys in the U.S. alone—and a stagnant donor pool. “In 1980 I would tell a patient they'd wait a year for a transplant,” says Arthur Matas, professor of surgery and director of the Kidney Transplant Program at the University of Minnesota and a vocal proponent of a regulated incentivized system. “Today, I tell them five or six years. And on the coasts it's 10 years.” Economists have argued that an open market would ultimately save money because a transplant ends a patient's need for dialysis, which is paid entirely by taxpayers.
In 2004, Matas co-authored a study that found that even if the government spent $95,000 on every donor it would break even. In the years since, studies have looked at smaller payouts and reported cost savings. A recent study garnering headlines looked at a model of paying a lump sum of $10,000.
But medical authorities have been opposed on the basis of “first do no harm,” and the threat of a slippery sci-fi slope toward organ harvesting from the poor. “Free people don't sell their kidneys,” says Gabriel Danovitch, medical director of the Kidney and Pancreas Transplant Program at the University of California-Los Angeles and member of the Declaration of Istanbul, whose signatories oppose sanctioned organ selling. The World Health Organization, the National Kidney Foundation, and Institute of Medicine all have positions against monetary reward for organ donation.
Advocates counter with a harm reduction philosophy: The fewer desperate organ seekers there are, the less demand for a black market, the less exploitation of the impoverished suppliers. But Danovitch points to data showing that financial reward results in a reduction of altruism: “We know from experience in multiple countries that the moment you pay people, the altruistic people stop donating—because they can get the paid donors to do it.” And that, he says, compromises the recipient's safety. “I've made a list of 15 different things you need to know about a donor that you can't tell from blood tests,” he says. He argues the success of the transplant is largely based on trust. “If I'm donating a kidney to my brother, I'm going to give honest answers, because I care about him.” But if the hypothetical donor is in debt or wants to send her kid to college, will she be as honest?
Matas doesn't see anything inherently wrong with a donor pool that's primarily poor. The poor, he says, already take risks for money that the affluent do not. “The affluent don't become fireman or policemen, they don't enlist in the army, they don't work on offshore oil rigs.” Complicating the issue is that most dialysis patients are themselves poor. Michele Goodman, a law professor at the University of Minnesota and advocate of a paid system, wrote in Forbes: “Ask yourself how the current system impacts racial minorities. African-Americans make up a third of the kidney transplant waiting list. They wait longer than any other ethnic population for organs, and they suffer the highest death rate while waiting.”
In his earlier papers on the subject, Matas wrote that “vendors” could be offered cash payments, health care, and life insurance in exchange for their kidneys. Others have proposed tuition vouchers, a down payment on a house, and retirement contributions.
Over the past decade, there's been a robust debate in the literature by prominent surgeons and bioethicists. For Danovitch, the bottom line is, “What kind of country will we be if you have to sell a kidney to get health insurance?”
The renowned bioethicist Peter Singer saw Organ Trade screen at Princeton last month and emailed his take that “it is worth experimenting with a regulated system of compensation for organ donors. That could save lives, and significantly benefit people living in extreme poverty. And it should be possible for it to be better for both parties than the present illegal trade.”
That argument may be gaining popular appeal. Bienstock has screened the film in several cities and began informally polling the audiences. She says about 75 percent consistently say they would consider buying a kidney overseas or selling a kidney. A recent NBC poll had similar results. At a 2007 meeting of the American Society of Transplant Surgeons, after Matas and a colleague each presented opposing arguments, a majority of the audience said they would support a trial of an open organ market.
One logical compromise would be for governments to reimburse altruistic donors for lost wages, child support, and short-term life insurance. That doesn't exist in the U.S. or Canada, though Australia recently instituted a system in which compensation goes directly to a donor's employer, who keeps sending paychecks through recovery. “That's removal of disincentives, and I have no problem with that,” Danovitch says. “Even the current law permits payment of all these things, but it just doesn't happen.”
Bienstock's film does not dwell on the debate, but she says the filmmaking has changed her own thinking. At one point while on location, the presence of her cameras turned a deal sour, and a young father excited to sell lost out. At first Bienstock thought they had done the man a favor. But she wasn't so sure after interviewing his wife, in tears. “She said, 'You don't understand, you haven't lived in our poverty.' And she's right, I don't know what it's like to have no other options.”