The ethics of organ drives in the social media age
Should patients be campaigning for their own donors? After months of wrestling with this prickly issue, a national committee of experts weighs in
Kidneys for the famous, livers for the cute and compelling — in the age of social media, should hospitals let patients campaign for their own organ donors when hundreds die waiting for transplants each year?
A national committee of bioethicists and doctors has grappled with that thorny question for months. The result, released this week by the Canadian Society of Transplantation, is a report that wades through a host of issues raised by the public solicitation of organ donors. In the end, the authors conclude the practice is “ethically and legally acceptable,” essentially because it doesn’t hurt anyone.
“The benefits really outweigh the concerns,” said Dr. Atul Hamar, the society’s president and director of the transplant program at the University Health Network in Toronto.
“It does raise awareness for organ donorship in general, and we currently have a severe shortage of organ donors everywhere in the country,” he said.
The report was prompted by a lack of legislation or guidance on this issue for transplant programs, Hamar said. There have also been some high-profile campaigns that garnered huge media attention recently, a phenomenon Hamar said he’s seeing more and more thanks in large part to the amplification of such appeals in the time of Twitter and Facebook.
Last year, the owner of the Ottawa Senators needed a life-saving liver transplant, and made a public appeal for help when no friends and family were able to be his organ donor. Hundreds came forward to donate, and the owner, Eugene Melnyk, received a new liver from a living donor in May 2015.
The other case involved Kingston twins Binh and Phuoc Wagner. Their adopted father was a match but could only donate to one of the girls, so the family kick-started an aggressive social media campaign last year that prompted hundreds to try and donate to the other twin. A student from the Royal Military College gave part of his liver to the little girl.
Hamar said that both cases removed someone from the recipient waiting list with organs that wouldn’t have otherwise been in the pool. On top of that, several people who signed up to save the Wagner twins and Melnyk, but were not selected to donate to them, agreed to give their organs to someone else — a spillover effect that helps justify the solicitation, he said. Two other children, for example, received liver transplants from people who signed up to donate to Binh Wagner.
“Our story saved other people, so do I have shame? Zero,” Johanne Wagner told the Star this week. “There’s no jumping queue here, you know? It was a directed donation. . . . There’s only a positive side to it. It helped other people.”
Critics of organ solicitation contend it can introduce unfairness into the medical system. A compelling or sympathetic story, not to mention a “beauty” factor, resources and media savvy, can provoke someone to save your life, while no one steps forward to help the Grinch tweeting about his liver failure from the next hospital bed.
The Canadian Medical Association (CMA) “discourages” the practice, even when a public appeal is through more traditional means such as community groups.
“The concern is that some Canadians have more resources than others, which could create an unfair advantage with respect to having access to organs,” said CMA President Dr. Granger Avery in an emailed statement to the Star.
Daniel Buchman, a bioethicist at the UHN and University of Toronto professor, agreed that organ solicitation can be seen as unfair. He said it brings up a number of issues: in highprofile cases, there’s the risk of unwanted attention and breach of privacy; people might try to sell an organ to the recipient; and hospitals need to make sure that a flood of potential donors doesn’t take resources away from other patients waiting for a transplant.
But that doesn’t mean the practice is “unethical,” Buchman said — some people are more likely to find an organ donor, and that’s just an unavoidable fact.
“You are at an advantage if you have a larger family or a larger network of friends that might be willing to come forward,” he said. “There are already those inequities that are built into society.”
Hamar added that the patient autonomy should also be respected — “realistically, there’s very little way to stop people from doing this. It’s their life; it’s their health,” he said — and that hospitals should go no further than educate patients about solicitation if they decide to appeal for an organ on their own.
Udo Schuklenk, Queen’s University philosopher and Ontario Research Chair in Bioethics, supports organ solicitation, too, concluding that “some people will be better off in light of this situation, and nobody will be worse off.”
But he said the discussion is really a “sideshow debate” that would be made moot if more Canadians signed up as organ donors. Indeed, Hamar and David Landsberg, head of the transplant programs in British Columbia, said the ideal is to have so many registered donors that there would be no need for living donors to step forward.
“You could probably say that we all in fact have some moral obligation to donate organs,” Schüklenk said.
Johanne Wagner agreed, and said she wants Canada to adopt an “optout” system, where the default status for everyone is to be an organ donor, unless you decide to remove yourself from the registry for personal reasons.
There are about 4,600 people waiting for organ transplants in Canada, according to a report last month from Canadian Blood Services. In 2014, 278 people died waiting for an organ.
“It does raise awareness for organ donorship in general, and we currently have a severe shortage of organ donors everywhere in the country.” DR. ATUL HAMAR ON PUBLIC CAMPAIGNS FOR OWNER DONATION