Facebook’s New “Organ Donor” Feature: Many Applaud It, but Some Raise Possible Concerns About Protecting Private Health Information

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Facebook recently announced a feature that allows a user to add “Organ Donor” as a “Life Event” to his or her timeline.  (Justia columnist Anita Ramasastry described Facebook’s Timeline, and the mandatory transition to it, in a prior column.)  Whether a user opts to provide his or her organ donor status is entirely up to the user, but the intent of the new feature is to spark discussion and raise awareness about organ donation.

If the first week of the new “Organ Donor” feature is any indication, it is a huge success. Donate Life California reported a staggering 3,900 signups on the first day alone, up from a typical 70 per day. Similar spikes have occurred throughout the U.S., and the U.K.—the only two countries in which the feature is currently available.

The potential benefits of such a campaign to raise awareness cannot be overstated.  According to a news release from Johns Hopkins Medicine, over 114,000 people are waiting for organs in the United States, and the need continues to increase.  Moreover, the news release cites surveys finding that upwards of 90 percent of Americans say that they favor organ transplantation, but only 30 percent are official organ donors.  Facebook’s new feature may shrink that disparity.

In this column, I will first consider why, in light of the countless philanthropic causes available, Facebook chose organ donation.  Based on this framework of what constitutes a “viable” cause for the purpose of Facebook, I will discuss the implications—both positive and negative—of this development, which brings social media and social awareness together.

Why Did Facebook Choose Organ Donation As Its Cause to Promote?

Of the thousands, or even millions, of philanthropic causes it had to choose from, Facebook somehow chose organ transplants as the single best issue to initiate its foray into social awareness.  While it may have been mere serendipity that led Sheryl Sandberg, Facebook’s Chief Operating Officer, and Andrew M. Cameron, M.D., Ph.D., a transplant surgeon and associate professor of surgery at Johns Hopkins, to brainstorm about how each of their respective fields could benefit from the other, the answer is likely more complex.

Assuming, based on the initial success of the new feature, that Facebook is on the way to achieving its goal of recruiting many more organ donor registrants than currently exist, I will look at the factors that likely contributed to the success of its choice.

First, registering is really easy.  Registering to be an organ donor requires almost no effort.  To register, you must simply fill out a simple form that is shorter than most online retail purchase forms, and you’re done.  The ease and speed here is important:  Anyone who has ever worked in nonprofit development or fundraising knows that the easier it is for people to give, the more likely they are to do so.  (Similarly, in the for-profit world, the easier it is for people to spend, the more and more frequently they do so—consider, for example, the effect of the invention of the credit card or the advent of Apple’s iTunes Store.)

Even before Facebook introduced its organ donor feature on May 1, 2012, signing up was easy:  One needed only to visit the Donate Life website to register as a donor.  But  in order to register, a person would first have to acquire the desire to be a donor, and, second, know how to become one. With Facebook’s new feature, these two prerequisites disappear.  By introducing the need for organ donors, Facebook sparked, in many, the desire to become one.  And as to the process required to become a donor, Facebook made an already easy process even easier, with minimal effort on its own part.

Second, organ donation requires no money.  Most philanthropy requires some sort of monetary transaction, or a promise to give or perform something of value.  Potential donors may well worry that they might themselves need the money or other thing of value, later in life.  With organ donation, however, the thing of value is transferred after the donor’s death—when the donor’s fear of personally needing that thing is gone. While many of our day-to-day obligations would be discharged upon our death, this one actually vests at that time.  The campaign slogan might as well be “Want to help others without incurring any expense or investment of time?  Register to donate your organs.”

“Causes on Facebook” used to be a prominently featured application in Facebook that allowed users to “organize themselves into communities of action that support specific issues, campaigns, or non-profit organizations.”  Non-profits were able to use Causes “to spread awareness about their work, recruit new supporters, launch fundraising campaigns, and sponsor petitions.”  However, a Washington Post article suggested that Causes was not as effective at fundraising as was first expected. The article points to the smaller size of donations, among other things, as a downside of online (as opposed to other) fundraising efforts.  But the “Organ Donor” life event feature, unlike Causes, does not depend on a dollar amount, which may be an additional factor in its initial success.

Third, organ donation is largely apolitical and irreligious.  Many of today’s social hot topics are entwined with one’s held views on politics and religion.  Contraception and abortion, LGBT issues, environmental issues, and even discussions as to the proper scope of certain human and civil rights are highly divisive, with the division based on one’s political or religious ideologies.  In contrast, almost all major religions condone or encourage an individual to choose to donate his or her organs upon death.

One reason that organ donation may transcend the typical political and religious skirmishes is that the recipient is seen as faultless, and the donor as the very paragon of selflessness.  Although large companies do often take sides on controversial social issues, Facebook’s choice of an uncontroversial social issue was surely calculated to improve its likelihood of success.  Possibly Facebook may someday work up to more controversial goals, or perhaps it will stay with goals with which almost everyone will agree—like providing clean water, preventing malaria, and ensuring that there is worldwide education for girls, and not just boys.

The Implications of Facebook’s Success With “The Organ Donor” Feature—And Some Possible Risks the Feature Raises

While the success of an attempt to raise awareness and initiate change for the good of society is undoubtedly desirable, we should also consider the implications of using Facebook for purposes beyond mere social networking.

Some critics of Facebook’s new “Organ Donor” feature caution that users should be extremely cautious when making their health information publicly available.  They advise that federal privacy laws such as the Health Insurance Portability and Accountability Act of 1996 (HIPAA) do not protect medical information that is disclosed on Facebook.  Yet, even putting donor status information aside for the moment, the social networking giant already allows users to provide other kinds of medical information: broken bones, weight loss, and overcoming or changing habits are among the “Life Events” users can share with others. Whether sharing such information is wise is an entirely different question, beyond the scope of this inquiry. (Anita Ramasastry, in a prior Justia column, also noted that information on Facebook may be used to calculate or recalculate health insurance premiums.)

Recently, Craigslist founder Craig Newmark announced an experimental “social media fundraiser.” His offer was to donate $1 to the National Wildlife Federation for each Twitter mention of the hashtag #Squirrels4Good.  Within 24 hours, there were already over 1,000 such tweets.  Like Facebook’s organ donation campaign, Newmark’s philanthropy required minimal effort and no money, and its goal was uncontroversial. (Who doesn’t love animals?)

Let’s assume that Facebook’s endeavor to promote registration for organ donations is ultimately successful, by some metric, as was Newmark’s.  The corollary question is whether its success demonstrates the viability of using Facebook to catalyze other types of social changes, thereby transforming Facebook from what was once a form of social networking, into a form of social engineering as well.

It is not a far cry to imagine that Facebook could go from campaigning for organ donor registration to be triggered upon one’s death, to also advocating that persons register for the kinds of donations they can make while still alive, such as donations of one kidney, of a portion of one’s liver, and of bone marrow.  However, unlike Facebook’s “Organ Donor” feature, such donations by the living would present concerns about the commoditization of organs, the law and ethics of which Justia columnist Sherry Colb discussed in a prior column for Justia

Alternatively, nothing prevents Facebook from going beyond those causes that are apolitical and irreligious, to taking stances on controversial issues as well.  With 526 million users worldwide, Facebook is a potent tool for reaching people in every corner of the globe almost instantaneously.  While its imminent public offering may affect the company’s subsequent ability to wield its power in an attempt to effect widespread change, the “Organ Donor” feature alone has given us an initial glimpse into one possible use of a massive global network, and the kind of power such a network can yield—for the good, and otherwise.  Whether and how this power will be used in the future remains to be seen; we can only hope that those responsible for it exercise great care with its use.

  • I think that privacy of medical information is important, but it is mostly confused by profits in a way that is not touched upon in this article. I think there are reasons to share some medical information and also reasons not to share it, but the primary concern of the medical system is the profits, and that taints the entire system.

    Most importantly, for the health of the patient, there are many times when information should be shared among doctors but it is not shared. That would be one thing if the primary concern were the patient’s privacy, but I think it is less okay when the primary concern is keeping the “customer” locked into that specific provider of medical care, even including that particular insurance company. The recent example that comes to my mind in this case is actually Whitney Houston. Is it possible that if the physician in California had been able to get more complete medical information about her, then he might have prescribed different medication and perhaps she would still be alive?

    Actually, from the perspective of the insurance company profits, concealing the patients’ information even becomes a crucial part of one company’s competitive advantage against other insurance companies. For example, if your competitors realize that your insurance company is making extra profits from certain medical treatments, then they’re going to modify their insurance policies and perhaps even their sales policies to cut into your business.

    For the insurance companies, there is absolutely no question but that profits is the #1 concern. Sadly, the larger problem is that profit has become an important consideration for many hospitals and even for some physicians. I’m not saying that the costs should be ignored or that profits are intrinsically bad, but when the money is driving the medical system, then you can often have problematic results. “Follow the money” is a useful approach towards understanding many problems.

    The mystery to me is what the rich people are so worried about if the poor people also get better medical treatment. It’s exactly the same as with legal services. In theory justice is supposed to be blind, but in reality we know the rich people are going to have the best lawyers and get the most favorable possible outcomes. In medical care, nothing is going to prevent the richest people from buying the best.