2016-07-27
Science and Spirit

Reprinted with permission from Science & Spirit Magazine.

Weakened by cancer and then by a progressive kidney disease that left him dependent on dialysis, Bob Hickey felt his life slipping away. To clear the toxins from his system, he needed to ramp up his already painful treatment schedule to a five-hour ordeal that would take place every other day. Even that, his doctors admitted, might not entirely counteract his disease, but would certainly place extra stress on his body. After four years of waiting for a kidney from the national donor list, Hickey contacted a hospice and was mentally preparing to die.

Then he did something that might seem reckless to those of us who are not ill and frightened and desperate to be well again: He tried searching for an organ online. Hickey joined MatchingDonors.com, a commercial Web site that functions like a dating service, but makes matches of organs like livers and kidneys rather than soul mates—at a cost of 295 dollars a month. For three months, the clinical psychologist living near Vail, Colorado, screened the 4,500 contacts he heard from through the Web site. First, he eliminated the women; at six feet five inches and a bloated 320 pounds, he needed a large kidney. After that, he interviewed eligible donors who matched his O-positive blood type. When finally, with the help of his transplant center’s medical testing staff, he had narrowed the field to three, he made his final choice.


"I picked the youngest one," Hickey says of Rob Smitty from Chattanooga, Tennessee. "I decided to swap my fifty-eight-year-old failing kidney for a thirty-two-year-old’s."

Hickey paid for all the travel and expenses, and what was only twelve months ago a very new and controversial transaction has today left Hickey a healthy man—and the first of sixteen people who have successfully received organs through MatchingDonors.com.

There’s nothing technically wrong with the path Hickey chose toward his new life; while it is currently illegal to sell an organ, it is perfectly legal to solicit one. Still, some medical ethicists say there’s something not quite right about the choice. They worry donations like the one Hickey received—donations of organs from living donors directed toward individual recipients—undermine the fairness of the existing system, which allocates organs from deceased donors to those who need them most according to an objective formula devised by the medical community. They worry that campaigning for an organ makes receiving one the result of a popularity contest and not the “gift of life” ideal of altruism that has forever been the foundation of organ donation. And they worry that when donors get to choose who receives their organs, they also are able to decide individually who “deserves” to live or die based on religion, race, or any other particular preference.

When people offer an organ to a stranger they meet on a Web site, they do so on the strength of the patient’s appeals: Maybe as fathers, they identify with a father of three who needs a new liver; maybe as daughters of mothers who spent years on dialysis, they want to ease that particular pain. Maybe they’re just moved by a compelling story. But those details about the patient aren’t medical; they’re personal, says Arthur Caplan, chairman of the medical ethics department and director of the Center for Bioethics at the University of Pennsylvania. Human as the human interest that drives such donations may be, Caplan doesn’t believe it should affect who gets to live or die. “Directed donation is not a place for the unattractive or those who have flaws,” he says. “The person’s story is part of the appeal. The person’s background is part of the appeal. Because it’s a gift framework, you’re stuck dealing with people’s desires and their feelings. But feelings aren’t always related to what’s fair.”

In one of the most recent and extreme examples of such bias, discussed at a public forum hosted by Harvard Medical School’s Division of Medical Ethics, a Jewish man in New York decided he would donate a kidney to a particular Jewish child in Los Angeles, based on his strong desire to help someone of his own faith. “Despite his discriminatory preference, one might view the donation as permissible, since at least some patients would benefit (the child would receive a kidney, and those below her on the waiting list would move up one notch) and no one would be harmed (those above the girl on the waiting list would not receive the kidney under any circumstances, because the man would not give it to them),” suggests Doctor Robert Truog, a professor of anesthesia and medical ethics at Harvard Medical School and a senior associate in critical care medicine at the Children’s Hospital Boston, in an article he wrote last summer for the New England Journal of Medicine.

To David Perry, though, "allowing something like that is reinforcing bigotry," and higher standards of responsibility are required. "It’s a tough choice because even if a person is a disgusting bigot, he can save someone’s life by donating an organ," says the professor of ethics at the U.S. Army War College. "But even though we don’t put restrictions on someone donating money to Jewish-only organizations, for example, when the stakes are life and death, we have to do better than that. There have to be better ways to encourage people to donate than to allow them to make bigoted choices."

The concern is that online directed donation will further the same prejudices. While MatchingDonors.com does not ask that profiles include the patient’s race, and only rarely do people volunteer that information, prospective donors choose which individuals they want to help based on a description of the patient’s situation and a photo. And if donors can see the recipient’s picture, they also can get a sense of the recipient’s ethnicity—and that information might influence their choice.

It’s an uncomfortable reality within the current organ donation system: If a person on the national waiting list takes herself off the list by finding an organ through private solicitation, the recipient benefits, and theoretically, no one else on the list is injured—except that the organ was obtained through an appeal that often has little to do with medical criteria. When it comes to direct organ donation to strangers, there are no standards that ensure recipients are chosen on the basis of need.

"What motivates people to donate their organs to a complete stranger? When people get hooked up on the Internet, is there some other affiliation that’s motivating them?" asks Doctor Mark Fox, a professor at the University of Oklahoma College of Medicine in Tulsa and a member of the ethics committee of the United Network for Organ Sharing, or UNOS, the national, government-contracted organ allocation network. "We’ve gone to great lengths to create an existing system that is ethical and fair. There’s nothing about the people who post online that merits special treatment. I’m a Catholic Democrat from Oklahoma--if I need an organ transplant, should I be rewarded because I have those affiliations?"

Directed living donation isn’t a new phenomenon. The first successful kidney transplant, performed in 1954, was one such operation: The recipient, Richard Herrick, received a kidney from his identical twin, Ronald. As techniques were developed to counteract the body’s immune system through radiation and, later, drugs, it became possible to transplant organs from genetically similar, though not necessarily identical, living donors: siblings, parents, cousins. The advances allowed for two other types of living donation as well: nondirected donation, in which the donor gives an organ to the general pool to be transplanted into the patient at the top of the waiting list, and directed giving to a stranger--the gift of an organ to a specific person with whom the donor has no prior emotional connection.

There’s no nationally coordinated system for matching living donors with recipients. For now, living organ donation bypasses the reach of UNOS, which allocates organs anonymously from deceased donors. (Many want UNOS to step in to provide some guarantee of fairness, but the organization’s ethics committee has only endorsed nondirected living organ donation, saying it is "morally commendable and ethically acceptable.") In administering the nationwide Organ Procurement and Transplantation Network established by the U.S. Congress in 1984, UNOS uses a set of guidelines or algorithms—which include severity of illness, length of time on the transplant list, tissue compatibility, and geographical location, among other criteria--to distribute organs from brain-dead donors as they become available. The calculations, difficult as they are to bear for those waiting for a compatible organ, are intended to create outcomes that are both as fair as possible and most likely to be medically successful.


With so many lives at stake and dependent on the goodwill of people who either think far enough ahead to consider their own mortality or have loved ones willing to donate on their behalf, the medical community remains protective of the notion that organ donation must be managed scrupulously and as fairly as possible. The idea is not just to protect the integrity of the present system, but also to ensure the participation of a public that might be less inclined to donate their organs if even a whiff of scandal adheres to the organizations that distribute them. For much of the medical community, the most ethically acceptable model is the anonymous allocation of organs, matched by a computer algorithm.

Not that the system is perfect. Last fall, St. Vincent Medical Center, one of the largest organ transplant centers in California, suspended its liver donation program after discovering that in September 2003, doctors there improperly approved a transplant to a Saudi national when the organ should have gone to a patient at another facility who was much higher on the UNOS list.

Yet for those who are on the waiting list and getting sicker, even a perfectly fair system is of no use if it can’t provide them with the organs they need in time to save their lives. Because the UNOS list is recalculated every time an organ becomes available from a deceased donor—and because doctors take into account how sick a patient is and how likely the recipient’s body is to accept an organ—those waiting for a transplant are never quite sure of their exact place in line. But if their blood type is A and they were placed on the list in 1999, they likely waited a little more than three years for a kidney; type B patients waited about five and a half years.

Today, the demand for organs far outstrips the supply. According to UNOS, more than 90,000 Americans are on lists for organs, mostly kidneys and livers. Yet from January through August of last year, there were only 18,994 organ transplants performed in the United States. Every day, seventeen people die while waiting for a vital organ, such as a heart, lung, liver, pancreas, or kidney.

Proponents of Web sites like MatchingDonors.com— including Doctor Jeremiah Lowney, the site’s co-founder and medical director—insist they aren’t trying to supplant or subvert UNOS. "We’re just bringing new people into the system, living people who want to donate an organ. We don’t want to compete with the current system; we just want to add to the pool of donors," he says. "Every person who finds an organ through us won’t be on the UNOS list—I can’t see how that’s not a positive.

It may be cut and dried for Lowney, but there are plenty who are concerned that online solicitation favors the affluent, the Web savvy, the articulate, and those who are in the racial or religious majority. The rights of minorities—and the possibility that donors might discriminate against minority recipients if given the ability to designate who gets their organs—are of particular concern online. On the Internet, potential donors can, in effect, seek out potential recipients who look like them, or believe like them, and then pick someone without having to say why—which makes it very difficult to pinpoint, never mind prohibit, discriminatory preferences. "If online solicitation continues, if it grows, it will effectively replace a fair system with a laissezfaire, unregulated system. People who are attractive, people who are connected to the Web, get to jump the queue of other people who need organs," says David Magnus, a Stanford University bioethicist. Once that happens, he says, "you can be assured justice goes out the window."


"God knows why people are willing to undergo surgery to give an organ to someone they only barely know," admits Lowney, who has more than 2,600 potential donors signed up on his Web site. "But I can tell you it isn’t race-based; I can’t see a racist being willing to undergo surgery to give one of his own organs to a stranger. That’s a gift of love." As proof, he cites the example of a Muslim donor and Jewish recipient who, matched by the service, became the site’s thirteenth donorrecipient pair. "They didn’t realize until they’d met what their religious situation was," he says, "and then they decided it didn’t matter."

Under the Uniform Anatomical Gift Act, which was introduced in 1968 and later revised, donors can give all or part of their bodies to science, whether to a hospital or medical school for research or educational purposes, to an organ bank or transplant center for therapy or transplantation, or to any specified individual. You can will your cadaver to, say, Harvard Medical School, or make arrangements to donate your heart to your best friend or ailing teacher or any person of your choice who needs that organ. What you aren’t allowed to do, according to the act, is bequeath your heart or kidney or pancreas or any other organ to the first eligible white candidate, or black candidate, on the list.

The regulatory power of the law was tested in 2000, when the family of a brain-dead man in Florida agreed to donate his organs, but only if the recipients were white. Although the organs were allocated according to the family’s wishes, the state subsequently passed a law prohibiting patients or their families from putting such restrictions on donation. In a 2003 telephone survey conducted by Transplantation magazine, the American public voiced a similar opinion with regard to living organ donation: Two-thirds of the more than 2,000 adults polled said they would not allow anonymous kidney donors to direct their organs to a member of a specific religious or racial group, or to a specific person with whom the donors have no prior emotional connection.


For others, however, the dearth of available organs is so dire that it trumps any ethical concerns about possible discrimination. In Doctor Robert Sade’s opinion, "people should be able to designate their donation in any way they wish, including for race if they choose." A professor of surgery at the Medical Center at the University of South Carolina and director of the Institute of Human Values in Health Care, Sade believes that "if a black person could designate that his kidney would go to another black person, it might increase the number of blacks who donate...Arguments that practices like this would encourage racism seem specious. Besides increasing organ donation, such designations might also be good biology."

Because certain cell parts that regulate the body’s immune system differ slightly between blacks and whites, a donor who has the same racial background as the organ recipient might be a better biological match, explains Sade. National statistics show that while blacks make up twelve percent of the total U.S. population, they constitute thirty-five percent of the people waiting for a kidney transplant. This is partly because blacks have an unusually high proportion of renal disease, according to Doctor Clive O. Callender, director of the Howard University Hospital Transplant Center in Washington, D.C., and founder of the National Minority Organ Tissue Transplant Education Program. "Since we [blacks] are so disproportionately affected," he says, "it’s clear we need to donate more—not just to help ourselves, but to help everyone."

Callender believes increasing the pool of available organs through education and outreach is one way of easing the problem, and it seems to be working: In 1990, minority donations were fifteen percent of the total organ pool; now, they make up twenty-eight percent. "Participation is important, and if it would encourage people to be able to choose the race or religion of the person who received their organ, I wouldn’t be against it," he says. "As long as it doesn’t offend someone who might donate."

As the need for transplantable organs has skyrocketed while the number of deceased donors has remained relatively steady, living organ donation and transplant surgery have become increasingly important resources for the medical community—and a significant alternative to the UNOS list. Nearly half of all kidney donors in the United States are living, and in 2004, living donors provided a lobe of the liver in approximately five percent of the total transplants and a lobe of the lung in another two and a half percent of cases. Those numbers take on increased significance given the limited pool of organs donated by those who have chosen to sign donation cards or whose families have signed off on donation when all hope is lost. In a better world, there would be enough cadaveric donors to cover at least the 6,000 people who would otherwise die without transplants; in a perfect world, there would be enough donors to eradicate the list entirely. In the less than ideal world of the modern transplant hospital, however, that’s simply not the case.

Doctor Robert A. Montgomery, chief of transplantation at Johns Hopkins Hospital and director of its Incompatible Kidney Transplant Program, estimates that by 2010, a patient on the national list will have to wait up to ten years for a transplant. Right now, the median wait time for white patients is nearly three years; black patients wait nearly four and a half years. As the shortage of available organs worsens, the medical community is struggling to increase donations through conventional means--education, modeling the best practices of the transplant centers most successful at convincing patients' families to donate eligible organs, and by pioneering new ways of making organs usable.

Until there are enough donations to meet the demand, however, patients like Bob Hickey will need to solicit organs, people like Rob Smitty will need to offer them, and services that allow some candidates to purchase public exposure will provide an increasingly valuable advantage. With so much demand for the same scarce resource, potential recipients will use whatever means are available and will share whatever information--hometown, hobbies, organizational memberships, religious affiliation, or race--they think will persuade a prospective donor. Like other forms of attraction, it's an inexact kind of appeal: Smitty says he browsed MatchingDonors.com, which has more than 100 patient profiles, looking for someone to help, but even he can't pinpoint why he chose Hickey.

For others, however, the dearth of available organs is so dire that it trumps any ethical concerns about possible discrimination. In Doctor Robert Sade's opinion, "people should be able to designate their donation in any way they wish, including for race if they choose." A professor of surgery at the Medical Center at the University of South Carolina and director of the Institute of Human Values in Health Care, Sade believes that "if a black person could designate that his kidney would go to another black person, it might increase the number of blacks who donate...Arguments that practices like this would encourage racism seem specious. Besides increasing organ donation, such designations might also be good biology."

Because certain cell parts that regulate the body's immune system differ slightly between blacks and whites, a donor who has the same racial background as the organ recipient might be a better biological match, explains Sade. National statistics show that while blacks make up twelve percent of the total U.S. population, they constitute thirty-five percent of the people waiting for a kidney transplant. This is partly because blacks have an unusually high proportion of renal disease, according to Doctor Clive O. Callender, director of the Howard University Hospital Transplant Center in Washington, D.C., and founder of the National Minority Organ Tissue Transplant Education Program. "Since we [blacks] are so disproportionately affected," he says, "it's clear we need to donate more-not just to help ourselves, but to help everyone."


Callender believes increasing the pool of available organs through education and outreach is one way of easing the problem, and it seems to be working: In 1990, minority donations were fifteen percent of the total organ pool; now, they make up twenty-eight percent. "Participation is important, and if it would encourage people to be able to choose the race or religion of the person who received their organ, I wouldn't be against it," he says. "As long as it doesn't offend someone who might donate."

As the need for transplantable organs has skyrocketed while the number of deceased donors has remained relatively steady, living organ donation and transplant surgery have become increasingly important resources for the medical community-and a significant alternative to the UNOS list. Nearly half of all kidney donors in the United States are living, and in 2004, living donors provided a lobe of the liver in approximately five percent of the total transplants and a lobe of the lung in another two and a half percent of cases. Those numbers take on increased significance given the limited pool of organs donated by those who have chosen to sign donation cards or whose families have signed off on donation when all hope is lost. In a better world, there would be enough cadaveric donors to cover at least the 6,000 people who would otherwise die without transplants; in a perfect world, there would be enough donors to eradicate the list entirely. In the less than ideal world of the modern transplant hospital, however, that's simply not the case.

Doctor Robert A. Montgomery, chief of transplantation at Johns Hopkins Hospital and director of its Incompatible Kidney Transplant Program, estimates that by 2010, a patient on the national list will have to wait up to ten years for a transplant. Right now, the median wait time for white patients is nearly three years; black patients wait nearly four and a half years. As the shortage of available organs worsens, the medical community is struggling to increase donations through conventional means--education, modeling the best practices of the transplant centers most successful at convincing patients' families to donate eligible organs, and by pioneering new ways of making organs usable.

Until there are enough donations to meet the demand, however, patients like Bob Hickey will need to solicit organs, people like Rob Smitty will need to offer them, and services that allow some candidates to purchase public exposure will provide an increasingly valuable advantage. With so much demand for the same scarce resource, potential recipients will use whatever means are available and will share whatever information--hometown, hobbies, organizational memberships, religious affiliation, or race--they think will persuade a prospective donor. Like other forms of attraction, it's an inexact kind of appeal: Smitty says he browsed MatchingDonors.com, which has more than 100 patient profiles, looking for someone to help, but even he can't pinpoint why he chose Hickey.

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