Desperately needed organs from anonymous living donors are saving lives but raise ethical concerns
"Ms. Vanneste’s gesture is part of a developing trend in transplant medicine: anonymous donors of kidneys or liver parts who are expanding the pool of desperately needed organs but also generating controversy.
"Some critics worry that living donors generally receive too little information about the potential risks, and that the long-term effects have not been properly studied, issues that arguably become more acute when there is no relationship with the recipient.
"The promise is alluring, though, given that the alternative — taking organs from recently expired bodies — can never come close to meeting the huge demand.
"Living donation has taken place since 1954, initially restricted to close family members, later expanded to include friends. Then came “chains,” where people who were not a match to a sick relative donated to another patient, and their loved one received an organ from someone else. The number of live donors in Canada now exceeds that of dead people whose organs are used.
"The transplant world used to stop short at taking an organ from living people who had no link to the eventual recipient, and some U.S. hospitals still refuse to do so. Yet dozens of volunteers a year have been approaching transplant centres across Canada about donating an organ to people they do not know.
"On the surface, at least, the practice seems to violate one of health care’s fundamental tenets — the Hippocratic pledge to “do no harm” — because it’s a procedure that, for the donor, is all hazard and no benefit.
"Doctors argue, however, that the risk to donors is minimal and the benefit to those suffering end-stage kidney or liver disease enormous, helping chip away at transplant wait lists on which thousands of patients languish — and many die.
"Kidneys from living donors also work better and longer than those from people who have died.
"Still, surgeons such as Dr. Robinette acknowledge they owe a special duty to people like the Vanneste sisters, unique among OR patients in that they have no medical issues themselves.
"As for the physical risks, specialists call them almost negligible. A 2010 study based on decades of data — only partially reflecting ongoing improvements in surgical technique — suggested just three living kidney donors out of 10,000 die within 90 days of the operation, and long-term mortality is no higher than among non-donors.
“That’s a very tiny risk,” says Dr. Ghanekar. “That’s much less than a lot of other things people do, like getting in a car and driving on the [freeway].”
"According to Statistics Canada, the death rate in traffic accidents for the general population in 2011 was actually somewhat lower, about .6 per 10,000, though that would encompass people who rarely travel by road.
"Other, recent research suggests that donating a kidney is generally safe, but not completely risk-free. A Johns Hopkins University study last year estimated that the rate of end-stage kidney disease among living donors was 30 per 10,000 — small, yet about eight times the rate among equivalent non-donors. A 2014 study by Ontario’s Institute for Clinical Evaluative Sciences indicated that women who donate a kidney have a one in 10 chance of developing high blood pressure during pregnancy, twice the risk among non-donors.
"The equation is somewhat less favourable for those who donate a piece of their liver. Though the organ has a unique ability to regenerate, about one in 300 living donors dies.
“The magnitude of risk is so much greater with [donating] livers than with kidneys, it raises a concern about the ethical soundness of the procedure,” argues Elisa Gordon, a medical anthropologist at Chicago’s Northwestern University who studies the field.
"Even for kidney donors, there is a general paucity of long-term data on safety, she says. And Prof. Gordon says interviews she and others have conducted with donors suggest many are not adequately informed before consenting to the procedure.
Risk, for instance, is sometimes not clearly communicated, while some donors complain they received little advice on how to protect their health following the operation, she says.
Help after the fact is generally scant for donors, echoes Cristy Wright, who gave up a kidney for her sister five years ago. When the organ failed in her sister’s body, the Ohio donor suffered an emotional fallout that left her in therapy for two years.
“There’s a lot of things on the back end that people are not prepared for,” says Ms. Wright. “Donors experience depression, they do grieve a lot of times for their lost kidney. … They experience anxiety and anger.”
"And beforehand, the pressure some face, coupled with vocabulary that tends to characterize them as “heroes,” makes it difficult to back out if they have doubts, she says."