By Rob Stein
Washington Post Staff Writer
Friday, September 23, 2005
In their often desperate hunt for a compatible donor, an increasing number of patients needing transplants are mounting personal online searches in something akin to Internet dating -- seeking partners willing to give up something other than their hearts.
With demand for organs surging and Internet access widening, more and more patients are setting up Web sites, making electronic pleas in chat rooms or telling their life stories on sites to entice willing donors, a trend that has triggered an intense and emotional national debate.
Supporters argue that Internet organ matching is already saving lives and has the potential to save thousands more by dramatically improving the odds of finding a donor. Rejecting the long-standing system based primarily on anonymous donations, proponents say the approach could motivate far more people to come forward by letting them get to know the person who will get their organ.
"We're touching people with personal stories, which is so much more effective than reading statistics or just donating anonymously," said Irma Woodard, who runs LinksForLifeCampaign.com from Albany, N.Y. "We're drawing a lot of people to donate who wouldn't otherwise. We're saving lives."
Skeptics, however, say the practice undermines the organ donation and allocation system by giving those with more money, Internet savvy, the most heart-wrenching story and even the cutest picture an edge over those who might be sicker but poorer, less resourceful, less sympathetic or just less photogenic. It may also promote racial or religious discrimination and facilitate illegal trafficking in organs, opponents say.
"What's going on out there on the Internet is a free-for-all on a lot of levels," said Mark D. Fox, a University of Oklahoma bioethicist who helps advise the United Network for Organ Sharing (UNOS), the private, nonprofit Richmond-based organization that oversees the nation's organ procurement system. "It's the wild, wild West, really. It has the potential for very well-intentioned people to be hurt."
Nearly 90,000 Americans are on lists for organs, mostly kidneys and livers, and many will die waiting. Only a small fraction get saved through the UNOS system, which allocates organs anonymously from cadavers. Patients have increasingly begun seeking living donors willing to give up a kidney or part of a liver or lung, often family members or close friends or individuals who respond to public appeals at their churches, schools or jobs. But some patients are going further, taking out ads in newspapers, blitzing neighborhoods with leaflets or even buying space on billboards. The Internet has sharply expanded that trend.
"The Web has suddenly created much wider access, which in some ways is great," said Jeffrey P. Kahn, a University of Minnesota bioethicist. "But we need to create access in a way that is equitable and doesn't lead to people being disadvantaged or exploited."
No one knows exactly how many patients have found organs through the Internet. But in addition to individual patient Web pages filled with emotional appeals and personal details such as MichaelNeedsALiver.com, BabyMarkJr.com and HelpMyGrandpa.com, several sites provide a venue for altruistic donors and potential recipients to meet.
"There's no national, coordinated means for matching living donors and recipients. With the global reach of the Internet, we suddenly had the opportunity to provide that forum," said Michael Murphy, who runs LivingDonorsOnline.org from Atlanta.
Clark Griffith, 49, a Treasury Department employee who lives in Crofton, Md., posted his profile on a site in November. Born with defective kidneys, Griffith struggles through shuddering chills and pounding headaches from dialysis three days a week and fears his time is running short.
"People are dying every day on the waiting list because they can't get an organ," said the divorced father of a 14-year-old son. "I want to be around for my son. I had to find other options."
The site that Griffith is using, MatchingDonors.com, has attracted the most attention and controversy because it charges fees -- $595 for unlimited access or $295 a month -- raising the specter of a commercial market in organs.
The site's founder maintains that all income goes toward running the operation, which routinely waives charges for anyone who cannot afford it. Griffith, for example, said the site waived his fee.
"We're not in this to make money. We're in this to help people. I'm a volunteer," Jeremiah Lowney, the site's medical director, said. The site lists about 2,300 potential donors and about 100 possible recipients, and claims to have facilitated more than a dozen transplants since 2004. Dozens more possible matches are going through a screening process.
But even if sites do not charge, many ethicists and transplant surgeons fear the trend runs counter to a time-tested system that tries to guarantee that the sickest patients get organs first.
"Our organ allocation system is imperfect, but there is a lot of effort and a lot of thought to make it as fair as possible. Once you go down this road and allow people to jump ahead in the queue through a popularity contest through the Web, you can be assured justice goes out the window," David Magnus, a Stanford University bioethicist, said.
Aside from potentially giving the more affluent, educated or computer-literate an edge, allowing donors to designate their recipient can lead to discrimination, Magnus and others say.
"You could easily see a situation where you have a donor who says, 'I'm only going to donate to a white person,' or 'I'm only going to give to someone with my religion,' " said Douglas W. Hanto of the Beth Israel Deaconess Medical Center in Boston, who represents the American Society of Transplant Surgeons.
Proponents, however, say that with computers available at public libraries, everyone has access, and no group is more or less likely to get offered organs. Donors tend to be drawn to recipients for very personal reasons. They may pick someone with common interests, a similar family background, or who reminds them of a beloved family member. And that cuts across racial, ethnic and religious lines, proponents say.
"I just wanted to help someone. I didn't have any particular kind of person in mind," said Gary Wang, 52, a single, gay Chicago book editor, who hopes to donate a kidney to Corey Briggs, a 36-year-old divorced father of two. Wang found Briggs on MatchingDonors.com.
"He is a nice guy, a former police officer as well, and someone who strikes me as wholly deserving of my help," Wang said. "I just want to make a difference for someone, and it's nice to know who that person is."
Karen Traxler, 37, of Greeley, Colo., who received a kidney in June from a donor she met via the Web, said, "I don't think it's a matter of the prettiest picture or the best story. It's a matter of a connection between the donor and the recipient.
"I know people who have chosen older people because their grandmother was sick. . . . People have all sorts of reasons," she said.
Internet appeals, proponents say, help everyone by expanding the pool of donors.
"Anyone you can take off that list, regardless of where they fall, is helping others to move up," said Lowney of MatchingDonors.com. "We're not interfering with that system. We're augmenting that system."
But opponents also fear private matching is fostering a lucrative marketplace for selling organs. Lois Greer, 68, of Salem, Va., said she gave up on her MatchingDonors.com listing after getting nothing but offers to sell her a kidney.
"Everyone who responded wanted money. I had one call at midnight asking if I'd pay $50,000. I had one from Peru saying they needed money and needed it bad and needed it fast. I had one who said, 'I have a kidney for you. What have you got for me?' " Greer, a retired machine shop worker, said. "It's nothing but a shame."
The Web sites acknowledge they are plagued by unscrupulous offers. They all post prominent warnings that selling organs is illegal, monitor listings closely and try to weed out anyone trying to offer an organ for sale.
Beyond outright sale of organs, skeptics worry about more subtle deceit. Recipients can legally reimburse donors for medical bills and other associated costs, making it difficult to draw a clear line.
"If I fly somewhere and donate an organ I incur some costs -- my hotel, my food, my babysitter, time lost from my job. But there are ways to inflate the expense of being a donor depending on who wants to know," Arthur Caplan, a University of Pennsylvania bioethicist, said.
By getting to know their donors, recipients are also making themselves vulnerable to extortion, Caplan and others said.
"There's always the risk that the donor, two or three or four years down the road, may have a problem and call the recipient and say, 'Hey, I did a favor for you a few years ago. Now I need you to do me a favor,' " Hanto said. "That's the problem with an arranged marriage, if you will."
Donors, too, could be victimized -- by patients who lure them with false information, or pressure them when they get cold feet. "Once that ball gets rolling, it's a difficult snowball to stop for someone who has misgivings," Fox said. "It becomes very difficult to say, 'I'm sorry. I've changed my mind.' "
In the absence of regulation, the decision whether to perform surgeries involving privately arranged donations is left to individual transplant centers. Most refuse because of the controversy. But some agree after subjecting donors and recipients to careful screening. Supporters say that provides safeguards against abuses; opponents argue that centers use inconsistent criteria and are ill-equipped to play that role.
Many want UNOS to step in to provide some uniformity and guarantee of fairness, but as recently as June, the organization decided against getting involved. It opted instead to simply provide information for donors and recipients through its Web site.
"I don't think we can legislate or regulate how people get to know each other," said UNOS President Francis L. Delmonico. "Once that occurs and someone decides they want to save another person, I don't think we ought to stop that as long as they are medically suitable, are not violating the law and are fully informed."