May 5, 2010

· News · Sociology

Nurse & Lawyer have a dialog on the Room for Debate roundtable on presumed consent. During the conversation, they say the following about my contribution:

Nurse: One of the panelists, Kieran Healy from Duke, makes what amounts to a ridiculous argument that this law will rekindle fears that surgeons are standing over sick people with hack saws, waiting to harvest their organs, and that they might just take them even if you’re not truly gone. Um… won’t those people just sign the opt-out if they are truly so concerned? As Arthur Caplan from Penn (woot woot) points out, most people do want to be donors. Healy also makes no suggestions. Maybe he’s against organ donation all together?

Lawyer: And what’s the source of the idea that doctors have more interest in one patient than in another? What interest does the doctor personally have in harvesting organs, unless the patient is his own kid? I agree. Opt out if that’s your nightmare.

I am not against organ donation. Feel free to read any of what I’ve written on this topic. And my argument is not ridiculous. What I said was, look at the data. Presumed consent does not mean what people in the U.S. think it means. Comparative research shows that, in practice, presumed-consent countries (a) do not perform all that much better than informed-consent countries; and (b) with literally one or two exceptions in the OECD (Austria, and to a lesser degree Belgium), presumed consent laws do not in practice remove the next-of-kin’s ability to veto donation. That means the slightly higher rates of donation seen in presumed consent countries cannot be due to the exclusion of the next-of-kin, because they aren’t excluded. As best we can tell they are the result of more investment and better training within the procurement system.

That leaves us with the question of what a strong presumed-consent law would accomplish in the United States. If such a law really, truly removed the next-of-kin from the process, it is not unreasonable to think that you’d get a very strong backlash against donation. This is so for two reasons. First, it’s a historical fact that, in assembling a viable transplant system in the ‘70s and ‘80s, transplant advocates had to do a lot of work to allay public fears that transplantation would lead to some kind of ghoulish body-snatching. These worries were addressed by putting together a common public understanding of donation as a sacred kind of gift — that is, as something that had to be given, not something that could simply be taken. That’s the American public’s understanding of donation now. Given that, legally asserting the presumption of consent out of the blue is likely to make a lot of people very worried or very angry. You can see this directly in many of the nearly 200 comments on the Times’ blog. If the goal is to maximize the donation rate, it’s not enough to say that these people are mistaken. Fears don’t have to be well-founded to make the donation rate go down, they just have to be widespread.

Second, it’s not enough to say “Um… won’t those people just sign the opt-out if they are truly so concerned?” or “Opt-out if that’s your nightmare”. Why? Because the point at issue is that, when a person dies, the family or next-of-kin assert a very strong moral (and perhaps legal) right to the body. (This is why, to reiterate, most presumed consent countries allow a kin veto.) The people to worry about are not those who opt-out in advance. The problem is with the living next-of-kin of potential donors when the deceased did not opt-out in advance. Those families will feel as a matter of right that they should decide what happens to the body of their parent, spouse, or child. Under strong presumed consent a procurement coordinator can say to them, “Sorry, the law says we can take the organs regardless of what you think”. What do you think is going to happen then?

You might believe that, as a matter of ethics, law, public policy, or medical need, that the next of kin really should not have a say. That’s fine. You might believe these people are deluded or misguided in their beliefs about the treatment of bodies after death. Maybe so. You might think that, in the long run, people will eventually come around to the view that everyone should just be a donor. Perhaps they will. What I’m saying is that you cannot just wish away the social facts as they stand, and those include the fears that people have about donation and the moral rights families claim to the body. The upshot is that introducing a strong presumed-consent law in the United States is just asking for trouble. This isn’t Austria. We’re in a country where there is a great deal of suspicion of government intervention in private matters, where there are great structural inequities in health care provision, and where there is already a comparatively high-performing donation system grounded in hard-won public acceptance of the idea that organ donation is a unique “gift of life”, not a resource to be harvested. In that kind of context, it is not a “ridiculous argument” to say that the blowback on a strong presumed consent law could be enormously negative.

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I am Professor of Sociology at Duke University. I’m affiliated with the Kenan Institute for Ethics, the Markets and Management Studies program, and the Duke Network Analysis Center. Learn more.

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