Social media is changing how people who need organ transplants find donors and is, in many ways, “leveling the playing field.” This technological innovation allows people to post their stories on popular platforms such as Facebook, Instagram, and Twitter, as well as newer platforms like Snapchat and Periscope. The best part? All of this is at no cost to people who need organs. The tremendous power of these platforms can be measured in the number of donors who come forward—when these stories go viral, there are often many people who express interest in becoming a donor. Only one of them can donate to that specific patient, but how great is it to have a host of people who are willing to donate to a stranger?
On February 12, 2016, ORGANIZE and the American Society of Transplant Surgeons (ASTS) co-hosted a workshop sponsored by Novartis in NYC to discuss this very question—what should we do with all of the potential donors who raise their hands after hearing patients’ stories on social media? I have a pile of potential donors on my desk, all of whom came forward after a patient posted the need for an organ on social media. Though helpful in many ways, managing this volume of willing donors is very resource and time intensive, posing a logistical challenge to transplant centers.
As a way of making this stack more manageable, we considered the possibility of creating a database to capture the information provided by these potential donors—an altruistic non-directed living donor database (ANDLDD). The main question we considered was 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, though unknown, individual?
To get the creative juices flowing, we asked three members of the group to represent different ethical stances and to argue for those stances, regardless of their personal feelings on the issue. ASTS president and Cleveland Clinic transplant surgeon Charlie Miller kicked off the conversation representing the con position by saying with gusto, “We don’t share and we don’t care!” He argued that transplant centers spend a lot of time and effort processing potential living donors and should not lose them to a registry that could be used by another transplant center. Moving away from the specific centers’ needs, he also argued that it is unethical to let people put themselves on a list to do something that could put them at risk. In other words, the medical community has a responsibility to protect people from themselves.
On the other side of the issue, Baylor University transplant surgeon Giuliano Testa represented the enthusiastic perspective and argued that a database would provide a forum for centralizing education and allow people to find out how they can help patients in need of transplants. Furthermore, it would point transplant centers in the right direction in terms of identifying living donors and, ultimately, result in more transplants.
Representing the ‘maybe’ position was Kristel Clayville, a chaplain and ethicist at the University of Chicago, who argued that we should proceed with caution. She wisely noted, “This kind of registry makes [the medical community] stewards of resources, and that creates obligations. What kind of obligations would this impose on the transplant centers?”
After much lively conversation on these positions, the group generated even more questions than we had at the beginning of our workshop. If we were to create a database, what rules would we put in place to ensure that it is ethical? Should there be a difference between liver and kidney donors? How will donors be assessed? Can donors choose to whom they will donate, or will the center choose? The donors did come forward to donate to a specific person, so should they have the option to make the choice of recipient again? And finally, who would own and run the ANDLDD? Would it be center-specific, regionally held, or nationally managed?
To begin to tackle these questions, ASTS, Northwestern Division of Transplant, and ORGANIZE are launching a collaborative to explore the design and development of a framework for an ANDLDD. This beta product will help transplant centers guide additional willing, living donors to other donation opportunities.
If you have thoughts on the ANDLDD or would like to attend our next workshop, we’d love to hear from you! Email us at [email protected]