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in Texas

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for Transplant Organs Becomes a Web Free-for-All

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 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 NeedsALiver.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 , who runs LivingDonorsOnline.org from Atlanta.

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. "

RSS Feed

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, "

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, " 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 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 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. "

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. "

Barb in Texas

Son Ken (31) UC 91 PSC 99