On May 1, Mark Zuckerburg, in an interview with “Good Morning America,” encouraged Facebook users to announce their intention to be an organ donor on their Facebook timelines. Announcing that you’re an organ donor on your Facebook timeline is not legally binding, but if you indicate an intention to donate, a link takes you to your state’s donor registry website where you can legally commit to being an organ donor. The announcement, according to some reports, has had a large and tangible impact: More than 100,000 people updated their statuses to indicate that they are donors, and 22,000 of them followed the link to their state registries. Though it is difficult to determine how many people actually registered, California has a telling statistic: An average of 70 people register as organ donors online each day, but in the day following Facebook’s announcement, 3,900 people signed up. Facebook’s dual aims – sparking a conversation around organ donation and enabling people to register to donate – are admirable for many reasons. But although we on the Editorial Board applaud Facebook’s decision, we contend that it is important to have a transparent conversation about the actual process of procuring organs now that organ donation has become a public part of one’s Facebook identity.

The benefits of organ donation are clear. Over 114,000 Americans are currently on waiting lists for transplants and a person dies waiting for a transplant every four hours. Furthermore, 90 percent of Americans support organ donation, but only a third of licensed drivers register to donate. Viewed through this lens, organ donation is a simple decision to save a life when yours is taken, and adding organ donation to the Facebook timeline is laudable at best and innocuous at worst.

Yet as bioethicists have pointed out, the process for determining death in order to procure a person’s organs is very rarely discussed in transparent terms. “Death and Legal Fictions,” a 2011 article in the Journal of Medical Ethics, describes the evolving definitions of death over the past 40 years. Traditionally, “whole brain death” is a prerequisite for organ procurement from a donor whose heart is still beating. However, recent neurological evidence has illustrated that people can still perform core integrative functions – such as digesting food, healing wounds, growing and even successfully bringing a child to term – during “whole brain death” with the aid of mechanical ventilation. As a result, the authors argue that defining death in terms of “whole brain death” is a legal fiction: “Whole brain death” is a legal requirement constructed because many of us feel that people with brain death have “lost” the capacities that make them human. “Whole brain death,” however, is not really death, since the patient can still perform core physiological functions.

“Whole brain death” is relatively rare in organ donations; more donations come from people with advanced directives that tell doctors to withdraw life support, thereby discontinuing circulation. Surgeons then wait before procuring the organs: usually two to five minutes after the cessation of cardiac activity, but sometimes as early as 75 seconds. The authors argue that determining death by this criterion is an “anticipatory fiction”: It allows us to treat something that is about to occur as if it has already happened. When a doctor withdraws life support, there is no certainty that circulation has irreversibly stopped in that short time period, but waiting too long damages the viability of the organs. As a result, defining death based on the cessation of circulation is another legal requirement that does not correspond to our intuitive notions of death.

The authors ultimately conclude that these two determinations of death are ethical – the organ donor who consented to donation was at least theoretically aware that this is how death is determined. Furthermore, failing to determine death by these criteria would deny the donor their wish of organ donation. Yet the authors also argue that in practice, the donor is rarely aware of how death is determined; there is an alarming lack of transparency around the issue. One of Facebook’s aims in adding organ donation to the timeline feature is to start a robust conversation about the importance of registering to be a donor. We wholeheartedly agree, but we need to make sure that the facts regarding organ donation and “death” are as transparent as possible to ensure that people make informed decisions.