Whose Organs Are They, Anyway?

Morality and the transplant system


David Undis thought he had found a simple solution to a grave problem. In order to encourage people to become organ donors, he founded LifeSharers, a group whose members agree to have their organs made available for transplant upon death, on the condition that other members of the group get preferential access to those organs. In its first year of existence, LifeSharers has attracted 820 members, a distinguished board of advisors, and a flurry of press coverage. There's only one problem: The medical establishment is almost uniformly against it.

The situation LifeSharers was intended to remedy is dire. Of about 82,000 Americans currently waiting for an organ transplant, almost 60 percent will die without receiving one. Last year, 6,596 people died while on the waiting list, and another 1,868 were dropped from the list while still alive, having become too ill while waiting to remain transplant candidates.

To Undis, a retired insurance broker who studied economics in college, the cause of the gap between the supply of organs and the demand for transplants was obvious: the 1984 National Organ Transplant Act, which forbade the sale of bodily organs. "The government has set the market price for organs to zero," says Undis, "so there's no surprise that there's a shortage."

Under the circumstances, Undis hoped that the transplant community would welcome an innovative way of increasing donations. He sought endorsements and cooperation from the American Medical Association (AMA), the American Society of Transplantation (AST), and, most crucially, the United Network for Organ Sharing (UNOS), the organization contracted by the government to administer the national organ-waiting list.

None of the groups had kind words for the project. Leonard J. Morse, chair of the AMA's Council on Ethical and Judicial Affairs, responded that the AMA's position was that organs should be allocated "solely according to ethically appropriate criteria related to medical need." Susan J. Nelson, executive director of the American Society of Transplantation, also declined to endorse LifeSharers, later objecting that by offering preferred access to donors, it would "disadvantage those who don't join." The most detailed criticism came from UNOS, whose support had been seen as key to raising the profile of LifeSharers and facilitating the transfer of organs between members.

The core objection advanced by UNOS is that LifeSharers creates a "restricted class" of individuals, and therefore "undermines the existing framework for organ allocation." According to Dr. Mark D. Fox, chair of the UNOS ethics committee, Lifesharers "bypasses the established allocation algorithm that's based on some objective criteria of medical urgency. It undermines the intent and the clinical basis of the existing system."

The consensus in the medical establishment appears to be that only medical necessity should factor into allocation decisions, lest doctors be tempted to assign organs on the basis of subjective judgments of personal moral worth. Donald Joralemon, a professor of anthropology at Smith College who has written on transplant ethics for the prestigious Hastings Center, voiced just this concern: "[LifeSharers] seems to me to value certain sorts of behaviors, assuming that people are going to make these decisions early on in their lives."

But if individuals want to make such judgments for themselves, and do so in a way that provides incentives for donation, shouldn't the transplant establishment at least be willing to cooperate? Not according to Fox, who holds that "organs are a public resource, so we ultimately have to serve the public good and the public interest with transplantation."

The desire to keep the allocation process value-free may be understandable, but it is probably impossible. A preference for the "sickest first" is itself, after all, one kind of value judgment about the best use of organs. The preference for those in most dire need is not absolute, however: The expected longevity of the patient after transplant is also taken into account. As anthropologist Joralemon points out, this creates an implicit bias in favor of the young over the old, or, as he puts it, against those who have "been in the game longer" and in favor of those who "have more innings to play." The patina of objective clinical criteria conceals the unavoidably ethical priority ranking underlying those criteria.

University of Pennsylvania bioethicist Glen McGee, who acts as an advisor to LifeSharers, attributes the prevailing attitude towards the group to the influence among bioethicists of the "rescue principle." According to this principle, the need to save an endangered life is a trump card: it is never permissible to allow someone who might be saved to die, and all lives must be weighed precisely equally, without regard for the moral desert of the patient. How, asks Joralemon, could we countenance denying an organ to the person most immediately in need of it in favor of someone who might live months or even years without it?

Yet there is something curiously self-undermining about this principle, which would clearly be disastrous if applied in the economic realm, where its counterpart is "from each according to his ability, to each according to his need." Just as large-scale attempts to eradicate poverty through redistribution produce more poverty in the long run by eliminating incentives for production, a system of organ distribution that neglects incentives creates long-term organ shortages, at the cost of thousands of lives each year.

While not convinced that donation incentives are a panacea, McGee has little patience for the resistance LifeSharers has encountered: "I'm sick and tired of hearing people argue that it's inherently morally wrong to do something like this when we don't have a bit of data. They think that this might be unfair. As opposed to letting 80 percent of the people waiting for dual organ transplants die?"

McGee, a fan of Friedrich Hayek and Adam Smith, sees LifeSharers as a "federalist" experiment, a small-scale trial run of a policy of preferencing donors in transplantation. Combining bioethics with economic reasoning, McGee avers that "the only way that you can teach people that they benefit from sharing and from a broader community is if you show them the benefit. If you want to encourage voluntarism, you have to show people that voluntarism leads to a better society, not just for people in general, but for them specifically."

Critics of LifeSharers also worry about fairness. After all, not everyone has heard of LifeSharers, and so many potential organ recipients may never have had an opportunity to join. But this is, if anything, an argument in favor of institutional support for LifeSharers. While the group remains fairly small, the relative disadvantage to non-members is similarly minuscule. As it grows larger and larger, the worry that potential transplantees may be unaware of it becomes less well-founded. By definition, of course, any group may end up excluding some people.

Undis, however, bristles at comparisons between LifeSharers and donations restricted by gender or ethnicity. "I don't know how you can be a 'restricted class' when you're open to everyone," he argues. "Anyone can join for free. Also, if you restrict your organ donations to redheads, you're not going to produce any more redheads. If you direct your donations to organ donors, you're going to produce more donors."

The strength and uniformity of opposition to LifeSharers becomes more mysterious in light of the transplant community's attitude toward other, apparently quite similar programs. UNOS already has a system of rewards in place for living donors. Their organ allocation formula gives four extra "points" to potential recipients who have donated organs themselves, a preference that amounts to a four year reduction in the average waiting time for an organ. UNOS has even created local variances in its allocation policy for programs like the New England Medical Center's Hope through Sharing, which allows living donors to designate friends or relatives to be moved up on the waiting list. Despite his objection to organ "commodification" and to judging the behavior or character of organ recipients, Joralemon acknowledges that such programs are, in essence, a reward for the risk undergone by living donors.

There is no comparable incentive in the official system for post-mortem donation, despite the fact that deceased or "cadaveric" donors are arguably an even more important source of organs. A single body can provide organs for transplant into many patients, and certain organs, such as lungs and hearts, obviously cannot be obtained from living donors. In 2002, 6,182 cadaveric donors, just under half of all donors, provided organs for 18,281 transplants, or almost three-quarters of the total performed. Yet less than half of the recently deceased whose organs could be transplanted actually become donors, despite the fact that post-mortem donation is essentially costless (except perhaps for those who harbor religious objections to transplantation).

Oddly, the same arguments UNOS now rejects as justifications for LifeSharers have in the past been employed by UNOS itself. In 1998, Dr. Lawrence G. Hunsicker, then president of UNOS, testified before Congress opposing a regulation that would end preferences for local recipients in organ allocation. Among his arguments, Hunsicker cited concerns that organ donations would decline if donors thought their organs would be more likely to get shipped across the country than transplanted to sick people in their own communities.

Hunsicker quoted several doctors to this effect, such as Steven Rudich of the University of California at Davis in Sacramento, who was "absolutely convinced that if organs are allocated away from Sacramento to larger metropolitan areas, organ donation would be severely compromised." In short, UNOS was willing to allow geography, a morally arbitrary factor if ever there was one, to play a role in allocation, at least in part because it was believed that this would boost donation rates.

Ultimately, it is hard to avoid a suspicion that part of the hostility toward LifeSharers stems from a sense that amateur interlopers are encroaching on the medical experts' territory. McGee, who was surprised by the number of people who "were made very, very uncomfortable by any criticism of the existing transplant system," says that "so many people have gotten so attached to the current system just because to create a new one would create massive cognitive dissonance." As UNOS spokesperson Annie Moore put it, "Lifesharers has created their own system, and they're doing it themselves. They're not acting within the system."

In a world increasingly characterized by the triumph of markets over central planning, the allocation of organs remains a command economy. Who can blame the planners for resenting the first entrepreneurs?