Site moved to, redirecting in 1 second...

2 posts categorized "Organ Transplant"

May 02, 2012

Monetization or medicine? Tracking organ donor status on Facebook

MP900402858Facebook 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

September 24, 2007

Organ procurement in a world gone wild

Organs for transplantation are so scarce, and the imperatives for organ procurement are so compelling, that some folks seem to do the darnedest things (even if we leave recent and not-so-recent stories about China out of this discussion).

Consider the recent story of a transplant surgeon who allegedly put the interests of potential recipients above those of a potential donor and got socked with criminal charges in California as a result -- a striking story and the impetus for my writing about organ transplantation today.

There are clearly points of tension between donor and donee, e.g., choosing a "good death" unattended by tubes and machines vs. going all-out to preserve organs for transplant. Patient self-determination butts heads with the so-called Breakthrough Collaborative, which has, for the past several years, sought to increase the "conversion rate" (i.e., rate of organ donation by eligible donors).

New federal regulations governing transplant centers don't really address procurement efforts, and state laws are being revised to allow for more organ donations, by potentially impinging on donors' wishes for a good death in order to preserve donated organs.

The demand for organs has always outpaced supply in this country (OPTN figues show a US organ transplant waiting list of about 98,000 at the moment), and these recent developments are just some of the ways folks are trying to deal with this. For further background, there is an interesting Joint Commission white paper on organ donation, a few years old but worth a read.

Another sort of approach, which I would personally like to see explored more fully in this country, would be adoption of a "soft" presumed consent law -- a reversal of the current legal presumption regarding consent to organ donation, but with appropriate protections allowing individuals and family members to opt out. For background on this approach, see the British Medical Asscociation's recommendation regarding presumed consent.

It seems to me that we've been waiting for science fiction solutions -- like artificial hearts (though Jarvik is now hawking Lipitor) and xenografts -- to become mainstream, instead of dealing with this issue head-on.

-- David Harlow