From social networking to social encouraging: Facebook on Tuesday said it would allow users to say on their personal pages whether they would like to be organ donors. The suggestion aims to reduce the thousands of people who die awaiting organ transplants. “This is a really tremendous breakthrough,” said Ryan Taylor, a transplant hepatologist at the University of Kansas Hospital. “You reach a point where donor awareness can plateau, and using social media to get the word out on a grass-roots level is good.”
Facebook users can add donor plans to their profiles, just as they already note a hometown or alma mater, Chief Executive Officer Mark Zuckerberg and Chief Operating Officer Sheryl Sandberg said in a blog post. There will also be a link to an official donor registry, the company said.
“Medical experts believe that broader awareness about organ donation could go a long way toward solving this crisis,” Zuckerberg and Sandberg said on the blog. “By simply telling people that you’re an organ donor, the power of sharing and connection can play an important role.”
Taylor, who specializes in liver transplants, said Facebook exposure could be the answer to the question he hears most often. “Loved ones of patients always ask me, ‘What can I do to help?’ I always say: ‘Sign your organ donor card. You may not be able to help this patient, but you may turn into a potential donor some day for someone else.’ That’s what’s important here — spreading that word of mouth.”
Though not an official registry and without any force of law behind it, Facebook has the power to simply spread the word about organ donations. Authorities emphasize that putting the information on Facebook won’t replace the need to register with existing state donor registries, either by going online or by visiting driver’s licensing bureaus.
Facebook has about 161 million U.S. members and about 30 million in Britain, the two places targeted by the initiative. That network, advocates say, will raise exposure, broaden the pool of potential donors and probably produce more matches for some of the 114,000 Americans currently registered on the U.S. Organ Procurement and Transplantation Network.
Only 28,535 transplants were performed in the United States last year, and 6,000 to 7,000 patients die each year awaiting transplants. “We’re so excited about the Facebook news when we think about the reach,” said Jan Finn, chief operating officer of the Midwest Transplant Network, who was at a national industry meeting in Dallas on Tuesday. “The word we’re all already hearing back is that people are going on their sites and registering.”
But she made it clear: “People are still going to have to sign up on a state registry to be considered a real donor. That’s still where we’re going to look for valid authorization of the deceased’s wishes. Facebook isn’t enough.”
Some privacy advocates said it was important for the Facebook listing to be self-generated and that compiled lists of would-be donors not be used for other purposes.
If used as intended, “I wouldn’t automatically be opposed to it,” said David Jacobs, consumer privacy fellow at the Electronic Privacy Information Center in Washington, D.C. “Organ donation shortages are a huge problem, and anything that can alleviate that shortage is obviously beneficial.
“At the end of any data collection, there are issues of disclosure, of storage. But if it’s used for the purpose of matching organ donors, who have registered themselves, there isn’t a principled reason why Facebook shouldn’t do this.”
According to the Midwest Transplant Network, there are about 2,000 people in Missouri and 1,000 in Kansas who are awaiting “life-saving” transplants. Fewer than half of Americans are registered as donors.
About four out of five transplanted organs come from deceased donors. Karen Glickstein, who specializes in social media law at Polsinelli Shughart in Kansas City, agreed that a Facebook notation “is a fabulous idea from a social conscience standpoint and as a way to get the message out.”
“But I don’t know how binding it will be. States differ on what constitutes informed consent, so we’ll have to watch and see what happens when and if (a Facebook notation) is challenged.”For example, if a minor registers as a donor on Facebook, family members may disagree that it’s a valid expression of intent.
The Facebook listing will appear in a section called “Health and Wellness.”“If you don’t want to answer the donor question, you don’t have to. You can leave it blank,” said Rebecca Jeschke, digital rights analyst at the Electronic Frontier Foundation in California. Jeschke downplayed any privacy concerns.
“In my opinion, there’s far more sensitive information than my organ donation status,” she said. “Personally, this doesn’t feel sensitive to me at all.”
Facebook officials said the donor option was part of a broad intent. “We hope to build tools that help people transform the way we all solve worldwide social problems,” Sandberg said.
Facebook last year began a “lifeline” service to link people with suicide-prevention counselors or to report people who appear to be in crisis. The company also has an anti-bullying campaign.