I'll give you my heart (but I might need your liver)
A new organ donor network riles ethicists with the idea that in order to get, you first have to give
EVERY 90 MINUTES somebody in America dies waiting for an organ transplant. According to the Department of Health and Human Services (HHS), there are about 84,000 people on the national transplant waiting list, a number that grows by about 12 percent every year. Meanwhile, the number of organ donors, both living and dead, increasingly fails to keep pace.
Since HHS secretary Tommy Thompson launched the "Gift of Life Donation Initiative" in April 2001, the federal government and the medical profession have spent millions of dollars and countless hours debating the best strategies for boosting the number of available organs. But while doctors and officials strategize, David Undis, a retired Nashville insurance executive, has been promoting his own solution -- a donor network ruled by the premise that in order to get you first must be willing to give.
LifeSharers (www.lifesharers.com), founded by Undis in May 2002, is a group that gives its members first dibs on each others' organs, should they become available. Becoming a member is free, and involves simply filling out an online consent form and then signing a membership card, as well as form letters for doctors and family members explaining LifeSharers' conditions. So far, more than 1,900 people have joined up.
To some observers, LifeSharers is an ingeniously simple way of encouraging more organ donations. But to others, it's an unworkable system that turns its back on traditional medical ethics.
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For decades, organ donations in the United States have been seen primarily as altruistic, a "gift of life" given solely for the benefit of others, no matter who those others are. "We view organs as a public resource for the benefit of all," says Dr. Mark D. Fox, chair of the ethics committee for the United Network for Organ Sharing (UNOS), the nonprofit organization contracted by the government to administer the organ transplant system. UNOS was first developed as a computerized donation system in the 1970s. It allocates scarce organs primarily according to compatibility, urgent need, and other "objective medical criteria."
Exchanging money for organs was outlawed in 1984 by the National Organ Transplant Act, a law passed after a Virginia doctor, H. Barry Jacobs, created an "International Kidney Exchange" that offered to match willing live donors from poor countries with Americans in need. (Organ selling remains legal and common in many parts of the world, and in the United States individuals can be reimbursed for donations of semen, human eggs, and, in certain cases, blood.) The most recent HHS recommendations for increasing organ donations -- more timely referrals of potential donors, the development of a national organ donor registry -- are essentially aimed at improving the current, altruism-based system.
But how accurate is this assumption of altruism? Laura A. Siminoff, a bioethicist at Case Western Reserve University who has studied the psychology of organ donors extensively, argues that what passes for "altruism" is often infused with aspects of self-interest. According to her 1999 report "The Fallacy of the `Gift of Life,"' many families donate the organs of a deceased loved one in order to "give meaning" to a tragic event, or to have the deceased "live on" in the transplant patient. In other cases, Siminoff noted in a recent interview, people enroll as donors because they figure they'd like to get an organ if they ever needed one.
Scholarly interest in the true nature of altruism has picked up in recent years. Ever since British biologist William Hamilton introduced his theory of "inclusive fitness" in 1964, scientists have debated whether seemingly self-sacrificing acts are really aimed at assisting relatives who share (and can therefore pass on) one's genes. The Institute for Research on Unlimited Love, founded at Case Western in 2001, gave initial grants of more than $2 million in November 2002 for research on altruism, traditionally defined. The funded studies included investigations of empathy among chimpanzees, the health effects of volunteer work, the neural pathways associated with parent-infant attachment, and the altruistic motivations for organ donation."
At a time when greed, hatred, and group violence might lead us to doubt its potential, we must rededicate ourselves to progress in unlimited love and its manifestations in the world," bioethicist Stephen Post, the group's first president, declared in a press release at the time.
LifeSharers puts less stock in the power of unlimited love. "Twenty years of lots of wonderful efforts has shown that charity and generosity is not enough to solve our problems," says David Undis.
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Because it taps self-interest as a motivation, the network Undis founded can be grouped with those who propose paying for organ donation, an idea that is increasingly getting a hearing within the medical community. In 2002, the American Medical Association and the United Network for Organ Sharing endorsed the idea of limited trials of financial incentives for posthumous organ donations. And last year, a bill to fund such studies was introduced by Representative James C. Greenwood, a Pennsylvania Republican."
Altruism is fine, but you can't really expect the highest motivation of human behavior to be the only one we allow when so many lives are on the line," says Harold Kyriazi, a neuroscientist at the University of Pittsburgh who supports LifeSharers. Last year Kyriazi founded the Ad Hoc Committee for Solving the Intractable Organ Shortage, which lobbies for the use of financial incentives to spur organ donation.
But to some in the medical community, LifeSharers is even more objectionable than organ selling. For instance, while UNOS endorsed the idea of putting financial incentives to the test, Dr. Fox, chair of that organization's ethics committee, has spoken out repeatedly against LifeSharers. Transplantation "is a socially important cause, and there's integrity, an intrinsic logic, and a sense of solidarity behind our system, rather than saying whoever is the most appealing in whatever way should get the benefit," he says.
The debate centers on two related issues. First, should one's status as an organ donor (or a LifeSharers member) be allowed to trump medical need? And second, are donated organs a public resource or something more akin to private property, to be disposed of as individual donors see fit?
As LifeSharers member Stephanie Murphy, a 19-year-old student at UMass-Amherst puts it, "If you volunteer to give of yourself when you die, without knowing if you will benefit or not from that commitment, then you should be given first access to available organs, regardless of need."
As it happens, the current system does give preference to live kidney donors who subsequently require a kidney transplant of their own. Yet Dr. Frank Delmonico, director of kidney transplantation at Massachusetts General Hospital and professor of surgery at Harvard Medical School, believes the LifeSharers concept is discriminatory and contrary to medical ethics: "What about the poor person who desperately needs an organ, but who's unaware of these arrangements, and a less desperate LifeSharer member comes along and jumps the line?"
Undis thinks otherwise. "The real ethical problem is presented when a doctor takes the organ away from somebody you wanted it to go to," he says. Adds LifeSharers member Roger Zimmerman, 42, of Wellesley, "If you don't own your body, what do you own?"
The Uniform Anatomical Gift Act of 1987 allows individuals to designate a specific recipient for their organs. UNOS has asked lawyers at HHS to review the legality of LifeSharers's attempt to broaden such designated donations to a class of individuals, namely fellow members. Undis is confident that his network is legal, and he maintains that when the primary goal is achieved -- eliminating the gap between organ supply and demand -- the ethical dilemmas will fade away. "It's truly the shortage that reveals the fairness or unfairness of the system," he says.
But the LifeSharers approach also runs up against some formidable practical obstacles. While the group has more than doubled in size since last May, it would likely need hundreds of thousands of people before there could be a realistic chance of member-member organ matches. (According to Undis, 10 members of the LifeSharers network are currently on the UNOS wait-list, while none have yet become donors.) Only about two percent of people who die in hospitals are suitable donors. And according to a recent study in the New England Journal of Medicine, even if 100 percent of Americans became donors there would still not be enough organs to meet the need.
Says Dr. Douglas Hanto, a surgeon at Boston's Beth Israel Deaconess Medical Center and chair of the ethics committee for the American Society of Transplant Surgeons, "One of the things we, as physicians, are constantly battling is death, even though in the end we always lose. There may be areas where it may not be worth it to walk through that door, because even if we had all the organs in the world, we'll never win this battle 100 percent."
Chris Berdik is a freelance journalist living in Cambridge.