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October 27, 2004

BehindTheMedspeak: Internet Organ Donor Uproar


Well, that didn't take long, did it?

Last Thursday I wrote that UNOS [United Network for Organ Sharing] - its hegemony over who gets an organ transplant now threatened from out of nowhere by MatchingDonors.com, where patients waiting and dying for an organ take matters into their own hands and find their own donors - would strike back, and hard.

Sure enough, yesterday's USA Today had a story in which UNOS' predictable stable of biomedical ethicists - in the O.R., we consider them basically roadblocks who, if in a jam, would abandon their stated precepts in a [transplanted] heartbeat - started in with their usual "ethical concerns," "fear abuses," exploit vulnerable people," "subvert the equitable allocation of donated organs," "undermine the public's trust" shibboleths and nonsense.

Hey, it's all about the wonderful, highly-paid executive jobs at UNOS and the burgeoning departments of biomedical ethics at universities nationwide, is what's behind these concerns.

Trust me, it's sure not about the patients who need transplants.

UNOS dropped the ball and lost the confidence of most of the medical establishment when it failed to ram through a federal law creating "Implied consent" to organ donation in the absence of other stated preference.

That, of course, would have instantly ended the donated organ shortage and the need for the UNOS.

So don't waste precious time and space on the problem that they've created.

Arthur Caplan, a bioethicist at the Center for Bioethics at the University of Pennsylvania Health System, was quoted as follows by USA Today:

"It's not a bad thing, but it's a questionable thing."

Boy, if there were ever a better statement of how ethicists look at the world while people die around them, I have yet to see it.

Here's the USA Today story, by Robert Davis.

Online organ match raises ethical concerns

The nation's organ transplant officials are scrambling to try to develop rules to guide surgeons and hospitals coping with a new twist: organ donors and recipients who find each other on the Internet.

Two men who met on an organ-matching Internet site - MatchingDonors.com - are recovering this week from kidney operations Wednesday in Denver.

But the medical establishment is still weak in the knees.

Allowing people to match their own organs online could exploit vulnerable people, subvert the equitable allocation of organs and undermine the public's trust, says the United Network for Organ Sharing, which oversees the process of distributing organs from deceased donors.

Officials from UNOS are working to come up with a new set of rules that doctors can follow when a would-be organ recipient comes into the hospital with an organ donor found online.

"It's not a bad thing, but it's a questionable thing," says Arthur Caplan, a medical ethicist at the Center for Bioethics at the University of Pennsylvania Health System.

"It's questionable because the people you encounter and the people you are going to be matched with may not be people who are telling the truth. The Internet is not the place for honesty in getting a mate, getting a loan and probably getting a kidney."

But people needing kidneys are desperate.

The number of people waiting for a kidney transplant has doubled in the past 10 years.

On Sunday, 60,029 people were hoping to get an organ to replace one of their body's toxin filters, damaged by diabetes, high blood pressure or other diseases.

But those people know that organs from deceased donors are too scarce to meet the national need.

Increasingly, they are turning to family, friends and strangers who are willing to give up one of their two healthy kidneys.

Last year, 15,137 people got a kidney transplant, and 40% of those organs came from living donors.

The clinical ethics committee at Presbyterian/St. Luke's Medical Center in Denver decided last week there was nothing wrong with a match being made on the Internet.

"If crafted carefully, this will allow them to be matched with people who need those organs," says Reginald Washington, chairman of the ethics committee.

"This is another tool. If properly used, it could be a very helpful tool."

A major concern is that people could start buying and selling organs, an illegal practice that could go on in secret.

The ethics committee sought signed promises from both donor and recipient that no money was paid for the organ.

But Bob Hickey, 58, of Edwards, Colorado, was allowed to pay about $4,500 for travel expenses and lost wages for Robert Smitty, 32, of Chattanooga, Tennessee, and his family to fly to Colorado for the surgery and recovery.

But Caplan worries that the match made on the Internet does not allow the donor enough medical support to fully consider the risks - including death - before making a decision.

Smitty, a food-service worker, already had decided to give a kidney to someone in need when he found Hickey's plea on the Internet.

"I was just in that frame of mind when I read about his situation," he said in a statement released by MatchingDonors.com.

And Hickey said in the same statement that he was happy to pay about $300 for the volunteers at the non-profit Web site to help sell him as a good recipient.

"I don't have any shame about saying it's advertising," he says.

"If we go on a list managed by the transplant center and the government, we don't have anything we can do. We just sit there waiting for someone to die."

Some health officials worry that allowing those with financial means to sidestep the system will cause further disparity in an already fractured health system.

But Washington says having a way to get around the current system, which studies have shown already has racial and financial disparities, could help those populations.

Now, people who need a kidney may go to a church group or a circle of friends and family and ask for volunteers to donate.

The odds of a biological match are small in such a small pool of people.

So instead of asking for a kidney, for instance, a sick person might ask family and friends for money to post their pitch to a wider audience on the Internet.

Whether MatchingDonors.com is a niche that fades away like so many once-hot Internet sites or whether it saves thousands of lives in the future, nobody knows.

"We encourage the ethical community to consider this as an issue," Washington says.

"It is now on the table."

October 27, 2004 at 01:01 PM | Permalink


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