Living Donors and the True Power of Facebook Virality

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When Rochelle, a patient at Northwestern University’s Comprehensive Transplant Center, first learned that no one in her immediate family was a suitable candidate for partial liver donation, she did what most do in today’s day and age – she took to Facebook. Posting her need for a life-saving organ that could be facilitated through a living donor, Rochelle quickly fielded a candidate list of over twenty people, strangers included. By telling her story to the world, she found people who listened, sympathized, and acted, and in the process created a potential donor pool well beyond her own needs.

Social media is changing the way people who need organ transplants find donors, and in many ways is “leveling the playing field.” Platforms like Facebook, Instagram, Twitter, Snapchat, and Periscope allow anyone to share their own stories and declarations with the public in real-time, allowing for immeasurable outreach as individuals across the world connect over common understanding. The best part? All of this is at no monetary cost to people who need organs.

When these stories go viral online, we often see a tangible spike in donation. It is exciting to consider that while only one good-Samaritan can actually donate to any given person, all of those who are moved to come forward are still potential matches for a different recipient. One person’s story actually has the capacity to save dozens of lives.

Learning of this new, viral dynamic led one transplant director to ask, ‘what should we do with all of the potential donors who raise their hands after hearing patients’ stories on social media?’ She currently has a pile of papers with potential donors on her desk, all of whom came forward after a patient posted the need for an organ on social media. Managing this volume of willing donors is very resource- and time-intensive, posing a logistical challenge to transplant centers. We are not reaching them with optimal efficiency, catching them between swim meets and tennis matches, and therefore not giving the donor the due respect they deserve. She opines that it is unfair to them, and also an ineffective system for us to determine their true interest.

As a way of making this stack of potential donors more manageable, the transplant center director believes there is an opportunity to build a database to capture the information provided by these potential donors—an Altruistic, Non-Directed Living Donor Database (ANDLDD). The main question to be considered is not “How should we build this?” but, rather, “Is this ethical?” Is it ethical to create a database of potential living donors who came forward to donate for a specific, even if unknown, individual?

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