Facebook Urges Members to Share Organ Donor Status

Starting today, users can add donor plans to their profile, just like they already note a hometown or alma mater, Zuckerberg and Sheryl Sandberg, Facebook’s chief operating officer, said on a blog post. There will also be a link to the official donor registry, the Menlo Park, California-based company said.

More than 114,000 people in the U.S. and millions more worldwide are waiting for life-saving heart, liver or kidney transplants, Facebook said. Many of them — 18 a day on average — die because there aren’t enough organs for transplant.

“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.

Facebook members can also update profile pages with a life event under a health and wellness section. Organ donor tops the list of potential status updates in the section, which also lets users add information about illness, weight loss, broken bones, and efforts to quit unhealthy habits.

Medical Privacy

That raises privacy concerns because medical information on Facebook isn’t protected by U.S. laws requiring doctors, educators and insurers to keep such personal data confidential, said Deven McGraw, director of the health privacy project at the Center for Democracy and Technology in Washington.

“Consumers need to be hyper-aware about managing their own privacy for this information, as it can be used against them,” McGraw said. “The sensitivity of health information underscores the need for there to be some baseline regulations on privacy protection to guard people.”

Facebook didn’t immediately respond to a request for comment.

The company last month said it would let its 901 million users see more of the personal data that it gathers as they navigate the site, a move that could give consumers more control over how that information is used. Facebook and Google Inc. are among companies facing scrutiny over their handling of consumer data. The Obama administration is pushing Congress to enact a privacy bill of rights giving individuals more control of their personal information online.

U.S. Organ Registries

U.S. organ donations are state-regulated, and sharing plans to become a donor on Facebook probably would not be legally binding, said Richard Durbin, director of the division of transplantation at the Health Resources and Services Administration, part of the U.S. Department of Health and Human Services.

To make donor intentions legally enforceable, people need to enroll in official registries, Durbin said. Facebook links to these registries on its site.

While Facebook’s push will likely boost awareness, it probably won’t be enough to eradicate the shortage of transplant organs, Durbin said. Each year, only 10,000 deaths in the U.S. result in organs that can be used for transplant, he said.

“Even if everybody eligible to be an organ donor became an organ donor it would not satisfy the need,” Durbin said.




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