Search for Transplant Organs Becomes a Web Free-for-All
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."