According to a recent investigation by the Los Angeles Times, four members of the yakuza, the Japanese mafia, received liver transplants at the UCLA medical center between 2000 and 2004. Two of the four men later gave a $100,000 contribution to the medical center, prompting speculation that a cash promise got them bumped to the head of the transplant waiting list. The story suggested that this revelation could “have a chilling effect on organ donation.” That worry already seems well-founded. “I’d say kill the gang members and take their organs to give to law-abiding citizens,” read one of the hundreds of hostile posts on the Times’ Web site. “You’re not getting mine!” said another. “I’m removing my name from the Donor list immediately.” A third charged that UCLA actually stands for “Universally Corrupt Liver Auctioneers.”
In an op-ed, UCLA tried to defend itself. Dr. Gerald S. Levey, dean of the David Geffen School of Medicine at the university, denied that the men had been whisked in for operations ahead of others. As for the public outcry surrounding the moral standing of the Japanese men, he said, “those who argue that criminals should not get transplants are on shaky ethical ground. Do we want to force caregivers to make a life-or-death decision based on whether a patient is a ‘good’ or ‘bad’ person?”
It’s a perfect storm of ethical anxieties: good organs going to bad people; medical professionals (perhaps) on the take; and, not least, a shudder of xenophobia. Levey is, of course, on entirely safe ground in arguing that physicians should not withhold vital treatment from their patients. But when resources are scarce—transplantable organs being the classic example—should some institution pass judgment when facts about a patient’s criminality are known? No, says the United Network for Organ Sharing, which coordinates procurement and distribution of organs from the newly deceased. As Mark Fox, former head of the UNOS ethics committee, told me, “Once patients have been placed on the waiting list, the list itself is blind to whether you are a saint or sinner, a celebrity or a derelict.”
There was a time, however, when character did determine access to scarce treatment. In devising a way to select patients, physicians imagined that the public preferred to think of decision-makers as wise stewards of scarce resources. In 1962, Seattle’s Swedish Hospital established what later came to be called the “God Committee.” Formally known as the Admissions and Policy Committee of the Seattle Artificial Kidney Center at Swedish Hospital, its task was to decide which terminal patient would get access to scarce dialysis machines, or artificial kidneys, as they were called then.
The committee grew out of a medical breakthrough achieved by Dr. Belding Scribner of the University of Washington. He succeeded in converting acute dialysis (good for perhaps six weeks) into a chronic procedure that could last many years. At the time, 10,000 Americans were estimated to be dying from renal failure each year. Scribner’s discovery made Seattle a center for the new field of nephrology, and when the Artificial Kidney Center opened in the city in January 1962, it was the only dialysis center in the country. There were three treatment slots and about 60 patients in the surrounding area who needed them. Scribner argued that choosing among medically eligible candidates was not a clinical deliberation; it was a societal one. And, as such, the burden of choice should be shared by the public.
The Seattle committee was composed of seven lay people—a lawyer, a minister, a housewife, a state government official, a banker, a labor leader, and a surgeon who served as a “doctor-citizen”—and was among the earliest instances, if not the first, of physicians bringing nonprofessionals into the realm of clinical decision-making. The members, all unpaid, insisted on anonymity. They considered the prospective patient’s marital status, net worth, nature of occupation, extent of education, church attendance, number of dependents (the more kids or dependent relatives, the better the chance of being chosen), and potential to resume work. They struggled with the ultimate question of who should be saved: the person who contributes the most to society or the one whose death would impose the greatest burden on society, in the form of children left without care or resources.
In November 1962, Life magazine ran Shana Alexander’s now-classic story about the committee. The article, “They Decide Who Lives, Who Dies,” drew national attention to in the drama playing out in Seattle. As Alexander showed, the members of the committee took their Solomonic charge very seriously. “As human beings ourselves,” one told her, “we rejected the idea instinctively, of classifying other human beings in pigeonholes, but we realized we had to narrow the field somehow.” Thirty years later, Alexander gave a speech titled “Covering the God Committee,” and from that point, the name stuck.
Critics of the God Committee charged that rationing by measure of human worth was an affront to the ideal of equality. But in the face of scarcity, choices need to be made. As the technology for dialysis spread across the country, other selection committees were established. But they were less explicit than the first Seattle effort had been about making judgments about human worth. “Physicians learned from Seattle to avoid the ‘costs’ of being highly visible in decision-making about who received treatment,” says Richard A. Rettig, a political scientist who chronicled the social history of dialysis policy. They made their choices based on predictions of which patients would be able to adhere to the demands of dialysis treatment (strict diet, meticulous hygiene, and reliable attendance several times a week) and which were likely to return to a socially useful role.
This meant that the selection committees took nonmedical traits into account. For example, some tested IQ, personality, and the vocational skills of dialysis candidates. The Peter Bent Brigham dialysis program considered the likelihood of a return to productivity and cooperation with care. The Los Angeles County Dialysis Center screened for a group of medically, psychologically, and socially optimum candidates and then selected among them by lottery. The Cleveland Clinic allowed patients access to dialysis on a first-come, first-served basis and culled only if some proved unwilling or unable to cooperate once they had begun the therapy. Only a few centers explicitly disqualified candidates because of criminal records, spotty employment, or indigence. But the chances of being chosen if you fell into these categories were not good, because the traits in question suggested a lack of the material and emotional wherewithal to comply with the demands of lifelong dialysis treatment.
Soon, many of the God committees became demoralized at having to preside over so many deaths. By 1972, pressure from advocates and physician groups was strong enough to move Congress to establish universal funding for dialysis through Medicare. The supply of limited resources—dialysis machines and facilities—increased overnight. And the wrenching ethical dilemmas of allocation disappeared, along with the God committees intended to resolve them.
The legacy of the Seattle committee lives on as a historic milestone, perhaps “the birth of bioethics,” in the words of bioethicist Albert Jonsen. No one wants to return to the days of the character biopsy—judging a patient’s social value—in deciding who gets access to rare treatments. But the UCLA story and others like it will continue to offend our sense of fairness as long as the nation’s dire organ shortage persists. The only way to dispel the ethical quandaries that stem from rationing is to expand the pool of organs so that more people can receive lifesaving transplants.
So far, we have failed on this front. After decades of public education about organ donation, the gap between supply and demand grows ever wider. Last year, more than 6,000 people died waiting for an organ that never came. Out of desperation, some patients travel abroad for transplants. They do so with the sickening knowledge that their new kidneys or livers will come from a poor native exploited by brokers in the underground organ bazaars that flourish across the globe.
It is time for the federal government to acknowledge that altruistic giving has not produced enough organs. Repealing the ban on donor compensation would permit the federal or state governments to devise a safe, regulated system in which would-be donors are rewarded for giving an organ to the next stranger on the list. If only the organ shortage itself provoked as much outrage as the UCLA mobster transplants.