October 16, 2008
Kidney Donation Web Sites Raise Ethics Concern
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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