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Facebook Urges Members to Share Organ Donor Status

Organ Transplant Donation Surgery
Surgeons extract the liver and kidneys of a brain-dead woman for organ transplant donation at a hospital in Berlin, Germany. Photographer: Fabrizio Bensch/Landov

Facebook Inc. Chief Executive Officer Mark Zuckerberg is urging members of the world’s biggest social network to share their organ-donor status on the site, aiming to spur more donations and ease wait times for transplants.

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 today added the ability to update a health and wellness section on profiles with organ-donor status. That medical section, debuted earlier this year when Facebook introduced a new timeline format, also lets users add information about illness, weight loss, broken bones, and efforts to quit unhealthy habits.

Medical Privacy

The donor addition rekindles 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.”

Andrew Noyes, a spokesman for Facebook, said anything in the “life events” area can’t be targeted by advertisers.

The company last month said it would let its 901 million users see more of their own 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 probably 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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