Presumed Consent Again

by Kieran Healy on December 23, 2009

Some work of mine on presumed and informed consent for organ donation has been picked up by Catherine Rampell at the New York Times’ Economix blog. It’s a good summary of the paper. We’ve had some discussion before about this stuff on CT, in the context of the possible introduction of a presumed consent rule in Britain.

{ 6 comments }

1

mollymooly 12.23.09 at 2:34 pm

2

Daniel S. Goldberg 12.23.09 at 4:09 pm

Kieran,

I continue to be amazed at what I find to be the general ignorance of your work in the applied ethx circles I move in. The interminable debate over the ethics of consent, the legalities, etc. continues unabated, with little discussion that I can see of even the possibility that social and institutional structures in particular countries and regions are much stronger determinants of organ donation than the valence of a specific policy or set of policies.

I mean, even if people disagree with your findings, it would be a pleasant surprise to see such findings engaged.

For the record, I do absolutely no work specifically in organ donation. But the discourse IMO continues to generate a large amount of powder and shot, and one thinks, especially with the trenchant sociological/anthropentric critique of bioethics, there would be added incentive to actually engage your argument.

But perhaps the fact that the ethics of organ donation is not one of my AOS means that there is in fact a great deal of engagement with your work that I am simply ignorant of. I would be interested to know if this is the case, and my lament is simply borne out of ignorance.

But somehow, I doubt it, not because of any delusions of my own savvy, but rather because I know too well how much applied ethx work does not seriously incorporate social science (other than economics) findings and claims.

JMO.

3

Benjamin Hippen, M.D. 12.23.09 at 11:14 pm

Daniel,

I guess I’m not sure what you mean, though I confess ignorance as to the circles in applied ethics within which you travel. I’m a transplant nephrologist with an interest in applied ethics, and as someone who actively participates in the various debates surrounding organ procurement, I can attest that Kieran’s work has been read and discussed. His book merited a substantive review (however brief) in the American Journal of Transplantation, and his discussion of the (decidedly unimpressive) correlation between presumed consent legislation in European countries and rates of organ procurement is visibly moving the discussion forward.

Too, starting with the banal premise that not all social science research is equal in quality or depth, I can also attest as a consumer of this research that your mileage may vary. For example, I find an unsettling amount of contemporary anthropology research in organ transplantation to be ideologically narrow and self-ratifying.

But, more generally, contemporary work in the ethical and public policy issues surrouding informed consent and end-of-life decision-making is increasingly well-informed by empirical social science research. Much of that work can be found in medical journals, which are eager to publish it. And yes, these days, papers about trolley problems divorced from social realities need not apply.

It also works both ways. Social science which incompletely accounts for empirical realities yields substandard analyses. Nudge contains a section on mandated choice for organ donation which is under-informed by empirical work on the subject, including Kieran’s work. I wrote a paper on organ procurement practices in Iran, informed by the available evidence, which in turn informed a parallel discussion of the licitness of using financial incentives for living donors. The existing evidence has its own methodological limitations, but there it is. That should be the starting point for discussions in applied ethics, and increasingly, I think it is becoming the standard for judging quality. It certainly is a part of my standard for making judgments about submissions to the transplant journal for which I have some editorial responsibility.

Nor am I denigrating the importance of theory, but this post is already too long.

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John Quiggin 12.23.09 at 11:35 pm

The Israeli proposal with which the article starts (giving those who have opted in priority as recipients) is an interesting shift in presumed norm from altruism to reciprocity. It will be interesting to see how this plays out, both as a policy and in the ethics discussion.

@2 is ‘ethx’ a term of art distinct from ‘ethics’ ?

5

Daniel S. Goldberg 12.24.09 at 7:15 pm

Benjamin,

Thanks for the information. As I indicated, my AOS in applied ethics is not in organ transplantation, so there is certainly the possibility that I am simply unaware of the extent to which Kieran’s work (or others of a similar ilk) is known and discussed. The myriad organ transplantation articles that come across my desk in ethics journals — as perhaps opposed to the ones in clinical journals — often seem to me to focus on many of the same kinds of moral and legal debates without sufficient attention paid to the ways in which social and political structures shape at a deep level what happens regarding organ transplantation.

Of course, this criticism is not simply applicable to organ transplants, but has been leveled — sometimes fairly, sometimes less so — at any number of desiderata within applied ethics, including within areas I am extremely familiar with (mostly but not exclusively problems in public health ethics). And while I certainly agree that much of the best work in many areas of applied ethics scholarship is deeply informed by empirical social science research (e.g., a recent Hastings Center report made wonderful use of some medanthro papers in discussing the problems of exploitation in international organ donation), I am reasonably confident in asserting that far too much of the work remains, to my mind, insufficiently interdisciplinary.

Accordingly, I am uncertain we disagree very much at all, seeing as how we both seem to think that quality social science research is extremely important in illuminating key features of applied ethics problems — but is, contrary to what some social scientists seem to imply, insufficient (Leigh Turner has some excellent recent articles on this counterpoint). It also seems self-evident that not all of the social science work is of high quality, and that interpreters may disagree on which evidence is of high quality, and on what the evidence implies for ethical discourse. But as I noted above, my concern is more that the work is not engaged to the extent I would like to see, such that disagreement would be more than welcome, but only if due consideration of that work precedes evaluation.

I am, as noted above, certainly open to correction on the extent to which transplant ethics work incorporates Kieran’s work. I am much more confident, however, in asserting that in many of the areas I actively work in, the commitment as opposed to the talk of integrating knowledge modalities from various disciplines — including humanities work outside of philosophy — is lacking.

John,

Not to the best of my knowledge. Just a silly shorthand.

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Jonathan Edelstein 12.24.09 at 9:45 pm

How would the Israeli proposal work vis-a-vis children? It seems like a good way to prioritize adult patients, who have free choice about whether to sign a donor card, but minors can neither do so themselves nor coerce their relatives to do so.

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