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Interesting Press Release

Posted Nov 06 2008 8:27am
I don't have time to fully comment on this press release from a study published in "Clinical Transplantation" (suuuuure you buy it for the articles...) that expresses concerns about sites including www.MatchingDonors.com.

My only comment is that I think a recipient's "social worth" matters. It certainly mattered quite a bit to me in making my decision to donate my kidney to Brenda. I've made this case ad nauseum in entries below, but let's review it again:

1. My kidney is my property.

2. As such, I may give my property to whomever I choose.

3. You don't presume to tell me which charities I may donate my money to. Accordingly, you must not presume to tell me which individual gets my other voluntarily-provided property, including my kidney.

4. The UNOS Cadaver Kidney waiting list should be managed in a blind manner without regard to race, income, or social worth, but living individuals should be free to donate their living organs to whomever they choose.

5. Living Donors who do not care about "social worth" should be able to make non-directed donations to anonymous strangers chosen by the hospital staff. The more options available for donors, the better.

6. I rest my case.

And thanks to the beautiful Becky Waller of The Greatest Gift Foundation for turning me onto this press release. Her super-smart blog can be found at:

http://greatestgift.wordpress.com/

Here's the press release:

Kidney donation Web sites raise ethical concerns

Boston, Mass. – October 15, 2008 – Living donor kidney transplantation is the preferred treatment option for patients with end stage renal disease. The outcomes of this type of transplant are superior to waiting for several years on the deceased donor transplant list while on dialysis. 38 percent of all kidney transplants in the U.S. are now performed using living donors. However, some patients do not have access living donors who are both willing and medically eligible to give them a kidney. As a result, some are now turning to websites that attempt to match people in need of transplantation with those who want to donate a kidney, so-called "Good Samaritan" donors.

A new study published in Clinical Transplantation examines the socio-demographic characteristics and profiles of patients who registered on the largest recipient/donor matching website in the U.S. The research focuses on the ethical issues raised by this system of recipient/donor matching, specifically, that the pursuit of living kidney donation may be based less on information relevant to transplant outcome and more on the persuasiveness of the appeal.

Little is known about the patients who choose to solicit living donors online. The authors examined the 224 profiles of potential kidney transplant recipients who registered on the largest donor matching website. Other than blood type, region and gender, surprisingly few socio-demographic and medical details were posted with most solicitation profiles.

"If one accepts that, as the waiting list grows, more and more patients will consider the public solicitation of living donors via websites like the one we reviewed, it is imperative that the transplant community begin to ask – and answer – some key questions," says James R. Rodrigue, co-author of the study.

There are concerns about this practice impairing public trust in the organ allocation system, and thus indirectly reducing the total number of living and deceased kidneys donated. However, donor-recipient matching services do not currently violate existing organ allocation policies.

"It is not surprising that patients will present themselves in the most favorable light while omitting characteristics that they perceive as undesirable, as to do otherwise might reduce their success in attracting a suitable living donor," says Rodrigue. "However, the transplant community has worked diligently for years to ensure that social worth and bias are removed or otherwise minimized from patient selection decisions, yet we passively accept such social worth judgments by Good Samaritan donors in the context of public solicitation."

The findings show that, as might have been expected, the proportion of patients who are white or employed is higher than among the general waiting list population. Patients may omit certain personal or medical characteristics for a variety of different reasons. Some patients may question the relevancy of certain characteristics (e.g., marital status), whereas others may be concerned about how certain features (e.g., age, race, transplant waiting time, whether family members had been evaluated for donation) may contribute to bias or discrimination among potential donors.

There are more than 75,000 individuals awaiting kidney transplantation in the United States. While recent efforts to increase deceased organ donation rates and to expand deceased donation criteria are promising, many patients continue to experience long waiting times and high morbidity and mortality while waiting.

The number of patients soliciting a living kidney donor is less than 0.5 percent. Patients often are very reluctant to ask relatives about kidney donation because of concerns about donor health, direct and indirect financial costs of donation, relationship issues and guilt. Good Samaritan donors are even more rare (71 in 2005 and 68 in 2006 in the United States), but they represent a source of hope for patients who do not have potential living donors in their family or social networks, or who do not want to place the health of family members at risk.

Even if more patients were informed of this type of online service, it is not entirely clear that transplant programs will accept publicly solicited donor-recipient pairs. In a recent survey of US kidney transplant programs, 70 percent of programs stated that they would not evaluate publicly solicited living donors. While the public solicitation of living donors does not violate existing national policies, some survey respondents expressed concern that such practices may lead to discrimination, favoring those who are more educated and wealthier, while exploiting potential donors and recipients.
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