I have a lot of respect for Mark Kleiman, and one of the reasons is that he generally stops, thinks, and considers the evidence before forming an opinion. Not in this post, though. He posts an article by a woman who is looking for a kidney donor over the internet. The article itself is thoughtful and moving. Above it, Kleiman writes:
"I missed the essay below when it first appeared in the New York Times, even though the author, Sally Satel, is an old friend. It's a story about the power of the Internet to facilitate good deeds.
Naturally, the "bioethicists" are against it. This reinforces my basic belief that "bioethics" should be punishable by prison time.
Note that the current organ donation system, of which the bioethics crowd is inordinately proud because it's so impersonally "fair," eliminates any incentive for families or communities to mobilize themselves to get their members registered as organ donors, because there's no relationship between who donates organs and who receives them. It would be wonderful, of course, if everyone in the world regarded everyone else in the world as infinitely valuable. But since that's not the case, I don't see either the moral or the practical case against trying to mobilize particularist emotions in the service of altruistic actions. To focus on the relatively trivial question of who gets the inadequate number of cadaveric organs donated, rather than the vital question of how many people sign up as donors, strikes me as reflecting an astonishing degree of moral blindness.
But of course I shouldn't be astonished. This is the sort of reasoning that dominates the pseudo-field of bioethics, and has, by infiltrating the Institutional Review Board process, put a serious crimp in both medical and social-scientific research."
Some problems with this:
(1) Are "the bioethicists" -- who apparently move in lockstep -- really against internet solicitation of organ donors? Well, no. Consider this article about a debate between, among others, Art Caplan and Dan Brock. Caplan is probably the most visible bioethicist out there, and he's quite sharp. Dan Brock, though, is one of the best bioethicists there is. And there is no good interpretation of "the bioethicists" that does not include Dan Brock, any more than there is a good interpretation of "the politicians" that does not include George W. Bush or Tom DeLay. That's why saying, for instance, "the politicians don't violate election laws" would be dumb.
Here's Brock's view of the topic:
"Still, Brock said, it appears that a person's own organs are private property that can be used as the individual chooses - by, say, making a donation to a family member or refusing to donate at all. Therefore, he said, it should be within a person's rights to make a private donation."
Brock is saying: this should be allowed, because a person should be allowed to do what s/he wants with his or her organs. He adds that there might be a need for regulations to prevent abuses, but, basically, he seems to be in favor. Caplan is against. There are significant numbers of people on both sides, as one might expect, if one didn't think there was a group of people called "the bioethicists" who hold all their opinions in common.
(2) Is "the bioethics crowd" "inordinately proud" of the current organ donation system? No. If "the bioethics crowd" does not have all its opinions in common, it certainly does not feel emotions like pride as one unified body. Some people like the current organ donation system. Others think it should be changed in various ways. The view that it should be permissible to buy and sell organs is a minority opinion in bioethics, but I would guess that the proportion of people who think it would be a good idea, given decent safeguards, is probably a lot higher than in the general population. Again, strange to say, we have differences of opinion.
(3) Is it true that "the current organ donation system ... eliminates any incentive for families or communities to mobilize themselves to get their members registered as organ donors, because there's no relationship between who donates organs and who receives them"? No. It's perfectly legal to specify who you want your organ to go to, either while you're alive or after your death.
This is not a minor detail. It's one of the few factual claims that Kleiman makes in his argument. And it's wrong.
(4) Kleiman is right on this point: "To focus on the relatively trivial question of who gets the inadequate number of cadaveric organs donated, rather than the vital question of how many people sign up as donors, strikes me as reflecting an astonishing degree of moral blindness." And if, in fact, bioethicists had not thought about the question how many people sign up as donors, that would be a pretty damning indictment. However, they have. There are, for starters, any number of articles on questions like: why on earth don't we make it the case that people will be presumed to be willing to be organ donors unless they explicitly state that they are not? That would allow anyone who wanted to to opt out of organ donation, but would greatly increase the pool of organ donors by adding to it all the people who don't care enough to make any statement of their wishes one way or the other.
Moreover, bioethicists have also noted that this question is absolutely crucial for deciding whether people finding donors over the internet is a good idea. Brock again:
"Dan Brock, Frances Glessner Lee Professor of Medical Ethics and director of HMS's division of medical ethics, said that if the practice of soliciting living donors is effective in causing the donation of organs that otherwise would not be donated, then the people on the UNOS waiting list aren't hurt by the practice.
If the organ would have been donated anyway - and there's no evidence yet which situation is the case - then people on the waiting list are hurt because the person receiving the privately donated organ presumably would have jumped their space in the line.
"I think we just don't know to what extent this practice increases supply," Brock said."
That is, I think, a crucial point. If the effect of people finding donors on the internet is to increase the supply of donated organs -- if the people who agree to donate would not have donated had they not read this particular moving story online -- then it seems pretty clear that it's a good thing. After all, the people on the normal donor lists don't lose out, but additional people do get organs. Everybody wins.
But if it does not increase the supply of donated organs -- if the people who agree to donate to someone whose story they read on the internet would have donated their organs anyways -- then all the internet does is change who, exactly, gets those organs. And this is not obviously a good thing at all. It would probably mean that the people who are capable of writing the most sympathetic-sounding pleas would end up with organs, while people who are less articulate, or don't have computers, or for some other reason don't manage to strike a chord on the relevant websites, would be less likely to. I don't think it's at all clear that this would be a better way of deciding who gets organs than the one we have now.
Even if it didn't have this sort of effect -- if, by some huge coincidence, the result of online solicitations was exactly the same as it would have been under the existing system -- it would still mean that people who need organs would have one more hoop to jump through in order to get them. (Everyone going online and writing their story would, in this case, be like everyone standing up in a movie theater: no one ends up seeing any better; everyone is less comfortable.)
Personally, I agree with Brock: I think people have the right to decide to donate their organs to anyone they please. But I think that the question whether we should in any way encourage internet solicitations of organ donations depends on this empirical question: to what extent will this bring in new donors, and to what extent will it simply change the recipients of organs that would be donated anyways? To the best of my knowledge, we just don't know the answer to this question.
But here's the thing: Kleiman seems to me to be assuming that internet solicitations would bring in new donors, and I don't see why he thinks this. Moreover, I don't see why someone who normally does stop to find out the facts wouldn't try to find out this one.
(5) "But of course I shouldn't be astonished. This is the sort of reasoning that dominates the pseudo-field of bioethics, and has, by infiltrating the Institutional Review Board process, put a serious crimp in both medical and social-scientific research." -- Bioethics has not "infiltrated" IRBs. We helped create them, in the wake of the research scandals of the sixties. We are not responsible for the IRBs that govern social science research; we tend to stick to biomedical research. Within biomedical research, a lot of bioethicists have concerns about the IRB process. Some of us worry that it makes people focus too much on the wording of consent forms, and not enough on whether or not anyone makes sure that people actually understand them. We worry that some researchers might think that the IRB 'takes care of' ethics, somehow, leaving them free not to think about it themselves.
But most of the bioethicists I know think that within biomedical research, IRBs have been, on balance, a good thing. I would be interested in hearing from Mark Kleiman about why he disagrees.
(6) And what on earth accounts for the general level of vitriol in this post? Like many fields, bioethics has some good people and some not so good people working in it. That doesn't make it a pseudo-field whose practitioners deserve prison time. -- I mean, I met Mark Kleiman recently. He seemed quite nice; a lot nicer than he would have seemed had I known that all the while he thought I should be incarcerated. I'm glad I didn't know that at the time; it would have been distracting to keep wondering when his posse was going to appear to cart me off to jail, or where he was hiding the handcuffs.