Facebook organ-donation effort could be a public boon

/// Facebook organ-donation effort could be a public boon

May 7, 2012  |  Blog

Facebook is the biggest online social medium in the world. People love it, are uneasy with it, even a little suspicious.

It just may have done something inarguably good, with immediate, measurable impact.

So far, that seems to be the case with Facebook’s new organ-donation push. On Tuesday, Mark Zuckerberg, CEO of Facebook, announced that users can now choose to indicate to their Facebook world that they wish to be organ donors. And, if you choose, a link can whisk you right to your state’s donor registry, where you can register online. “On the one hand, now family and friends will know your wishes,” says Art Caplan, director of the Center for Bioethics at the University of Pennsylvania. “On the other hand, if you’re not yet registered with your state, they make it easy.”

In a news release with chief operating officer Sheryl Sandberg (a major architect of the initiative), Zuckerberg said: “We believe that by simply telling people that you’re an organ donor, the power of sharing and connection can play an important role.”

How does it work? You go to your Timeline, the front page for all users’ activities. Select “Health and Wellness,” choose “Organ Donor,” and then, as you can for any such option, decide how big a “Public” you want for your status update. Under Organ Donor, if you wish, you can tell why you made your choice.

Impact: In the 24 hours after the announcement, more than 100,000 people chose the Organ Donor status update; 22,000 of them followed the link to their state registries. The nonprofit Donate Life followed activity in 22 states, in which 6,000 people went all the way. The normal daily sign-up figure for those 22 states: a poky 400. In California alone (daily average: 73), 3,900 signed up.

Why is this needed? According to Andrew M. Cameron, director of liver-transplantation surgery at Johns Hopkins University Medical Center in Baltimore, “There’s an organ-donation crisis in the United States, an intractable shortage of organs for those in need.” The United Network for Organ Sharing (UNOS) says more than 114,000 are on waiting lists. More than 6,600 died waiting last year.

“That’s why this could do a whole lot of people a lot of good,” says Anne Paschke, spokeswoman for UNOS, a nonprofit that manages the U.S. transplant system under a government contract.

Yes, you can tick off a box on your driver’s license or donation card at the DMV. “Let no one knock the DMV,” says Caplan. “If that’s how you sign up, fine. But results have been spotty.” That’s what’s weird: “Polls show consistently that 90 to 95 percent of respondents support organ donation,” says Cameron, “and yet only about 42.7 percent of those with driver’s licenses are registered.” It varies widely from state to state (Colorado, 62 percent; New York, 15 percent).

“Something’s wrong with how we do it,” Cameron says. “The DMV might not be the most welcoming place to make such a decision. And, unless you tell somebody, there can be a lot of uncertainty about donors’ wishes.”

Cameron played a major role. Sandberg was a college chum from Harvard. At a 20th-anniversary reunion, she told him she’d read a paper of his on organ donation. ” ‘I remember what you wrote,’ she said, ‘and I think Facebook could make a difference.’ We got together and discussed exactly how to go about this.”

Zuckerberg credited his girlfriend, Priscilla Chan (a med student), as well as his friendship with the late Apple founder Steve Jobs.

So, this isn’t coercive? “It’s pressure, sure,” says Caplan, “but coercion, no. It’s opt-in; it’s all up to you. And there are no penalties if you don’t do it. It’s quite clever: They’re encouraging people to talk about it, create a community that values donation. Yes, if you saw all that around you and didn’t share that, you might be uncomfortable, but no one is twisting your arm.”

Caplan says, however, that he’d be “sorely disappointed” if Facebook made this a sales opportunity. When you indicate likes and dislikes on Facebook, it can trigger ads related to your interests. “It’s hard to imagine how they could do that here,” Caplan says. “If they did, it would shift from a public good to marketing.”

Another question is how long this issue will stay hot with the Facebook world, a land of many fads.

“We’re absolutely delighted so many more people are talking about it,” Paschke says. “The goal is to increase registered donors, but to have so many people newly aware is a good in itself.”

As Cameron says, “Facebook has shown it’s good at starting conversations.”

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