Monetization or medicine? Tracking organ donor status on Facebook

Facebook has announced a new box you can check off on your profile: organ donor. (It's available in the US & UK so far, for a total of almost 200 million members; more countries in the works.)

What does this mean and why should you care?

At bottom, this means that Facebook is adding yet another data point to the myriad bits and bytes it already has on so many of us (What's your birth date? Have you ever broken a bone? etc.), which it slices and dices in order to target ads and sell to third parties (and flog news of its upcoming IPO). Checking off the organ donor box on Facebook doesn't make you an organ donor (you need to register with your state DMV), but serving up easy links to organ donation registration sites and motivating registration by showing that friends have registered (or at least checked the box) — i.e., "norming," in the parlance of BJ Fogg, as quoted in the NY Times piece linked to above — is likely to increase donor registration, and to increase family awareness of the choice at (or, preferably, before) the time when family members are called upon to carry out the wishes of a donor.

If you are spooked by the idea of Facebook having this information about you, I would ask whether you make your birth date visible on Facebook. I don't; revealing birth date makes identity theft that much easier, and I'm more spooked by that possibility than by the prospect of everyone on Facebook knowing my organ donor status.  I am not concerned (as some are) about someone making the decision to treat me as nothing more than a vessel for donated organs, and I think that it should be possible to strike a balance between a good death and preserving organs for transplant. 

Anything we can do to legitimately increase the supply of organs for donation is a good thing — too many people languish and die while waiting for an organ.  My problem with this solution is that it is as much about Facebook as it is about organ donation.  While I would expect donor numbers to go up as a result of this initiative, the numbers are not likely to be too significant, because implementing the choice to donate organs requires doing more than clicking something on Facebook — it requires going through all the steps necessary to memorialize an organ donation in the real world.

I would like to see Facebook using its muscle to lobby for a presumed consent law — meaning that in the absence of formal directives to the contrary, the presumption should be that a person has consented to organ donation at the appropriate time, reversing the presumption now in effect in this country.  The company has taken an interesting first step, and it will be interesting to see if it pursues this issue beyond the limits of its own pages and monetization strategy.

David Harlow
The Harlow Group LLC
Health Care Law and Consulting