Organize’s organ donation registry takes social media posts into account.

If You Want to Make Sure Your Family Knows You’re an Organ Donor, Put It on Facebook

If You Want to Make Sure Your Family Knows You’re an Organ Donor, Put It on Facebook

The citizen’s guide to the future.
June 29 2016 7:00 AM
FROM SLATE, NEW AMERICA, AND ASU

The Final Gift

Social media and the internet are making it easier than ever to donate your organs.

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Social media isn’t just good for promoting your wishes; it may also be the right place to establish your intentions in the first place.

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When former surgeon general Kenneth Moritsugu’s wife died in a car accident 25 years ago, he knew what to do. “Because we had discussed this issue before, the decision to donate her organs and tissues for transplantation was simple,” Moritsugu said at a White House summit on organ donation in June. Things were murkier when his daughter died not long after. Though Moritsugu and his family ultimately decided to donate her organs, too, they had no formal record of her wishes. “Knowing her intention would have made the decision so much easier,” he said.

Another speaker, Jenna Arnold, suggested that the problem stems at least in part from systems that poorly reflect contemporary conditions; she is the co-founder of Organize, a nonprofit that aspires to update the organ donation process. As David Bornstein writes in the New York Times, the U.S. largely delegated responsibility of organ donation systems to the individual states when the movement began in the 1960s. Today, most of those who register still do so at their local DMVs.  “That’s an awkward place that you want to have about what to do with your remains after you die,” Johns Hopkins liver transplantation surgeon Andrew Cameron pointed out to me.

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In the decades since Moritsugu made that hard choice about his daughter, the organ wait list has swelled in the United States, with more the 120,000 individuals waiting for life-saving transplants. Meanwhile, eligible donors are still sometimes difficult to identify, thanks in large part to that antiquated registration system. Cameron, for one, has sought to push things along by working with Facebook to let people promote their organ donor status. The potential power of such advertisements is revealing: After Facebook debuted those notifications in 2012, organ donation rates went up immensely. Though that increase wasn’t permanent, the experiment still offered a clear indication that social media can make a difference.

The trouble, of course, is that the organ donation system itself remains needlessly baroque: Registration happens at the state level, and the dozens of state registries don’t always communicate well with one another. Hoping to update that process, Arnold and her collaborators at Organize looked into the details of the Uniform Anatomical Gift Act, which first formalized organ donation standards in the 1960s. “We knocked on the doors, very literally, of the two original authors of the law” and challenged them to come up with a modern update to older-fashioned declarations like “signing a donor card or leaving a recorded message on an answering machine,” Arnold said. To their surprise, the bill’s authors suggested that “a post on Facebook, a tweet, or a post on Instagram could qualify.” That is, social media isn’t just good for promoting your wishes; it may also be the right place to establish your intentions in the first place

Things are this simple in part because, as Moritsugu’s story shows, when you die, it falls on your next of kin to decide what to do with your body, even if you’re not formally registered as an organ donor. Distressed family members might be relieved to recall that that you once tweeted #organdonor or even (the Organize-endorsed) #donatemyparts. Much as we might criticize hashtag activism, tweeting about your organ-donor status literally might save lives.

The trouble, of course, is that social media is fundamentally ephemeral. Even if we weren’t constantly producing new posts, social media sites are far from stable platforms. (Try to visit your old Friendster profile: It became an online gaming site, only to be deactivated in 2015.) To push back against that risk—and make social media declarations more useful—Organize works to scrape those declarations from the web and store them in its centralized registry. Dana Spiegel, the company’s chief technology officer, told me, “If Twitter disappears in a couple of years … we still have a record of this stuff.” Organize can then pass that information onto organ procurement organizations who participate in its centralized registry, potentially giving next of kin a second way of affirming the wishes of the deceased.

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Organize isn’t just relying on social media, however. It’s also attempting to facilitate the registration process through its centralized online registration system. That system works to gather the information needed to include you in your state registry and then attempts to pass the details on. It boasts on its site that visitors can register in under a minute. To some extent, that efficiency is a product of the way Organize has worked to smooth over the fragmentation of the organ donation process. It starts by requesting your ZIP code and then varies the information it solicits, asking for only the information required by your local registry. There are still technical hurdles to overcome: In some cases, Spiegel told me, they can’t submit users’ wishes to regional registries because of CAPTCHAs and other security measures. In other cases where digital submission isn’t feasible, legacy systems are difficult to interact with.

Ultimately, the best solution may be to overcome the fragmentation of the registration process. At the White House, Arnold invited the various organ procurement organizations to make use of its national registry database, which it calls 53. As Spiegel told me, that database works to build more complete pictures of users and their wishes—collecting and centralizing information from various sources, social media declarations, and more formal statements alike. This means that over time it can accumulate a more totalizing image of your desires, potentially allowing Organize to offer an image of you that makes it harder to overlook or ignore your intentions.

Obviously this means that the database contains a great deal of personally identifying information—not just public social media posts but also more specific details such as Social Security numbers. Spiegel assured me that the nonprofit strives to keep that information secure. “Our registration system is a black box,” he said. While the company has made its APIs broadly accessible, allowing its partners to build registration forms into their own sites and apps, none of the details that users input are publicly available.

Of course, what matters most is the way we communicate our wishes to family members—and the way those wishes are reaffirmed after our deaths. Organize’s Cody Musser suggested to me that by speaking openly about the topic, you can help physicians communicate with your loved ones after your own death. It’s difficult to contemplate that scene, but the process can only ever start by making us just a little more comfortable with uncomfortable conversations. As Moritsugu observed, organ donation technologies have grown more advanced. It’s time that the registration process catches up.

This article is part of Future Tense, a collaboration among Arizona State University, New America, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, follow us on Twitter and sign up for our weekly newsletter.