Mark Kleiman Is Annoyed, And I Am Perplexed

by hilzoy

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.

Comments

[Phoebe]

Internet solicitations might bring in new donors because if a person isn't a donor and reads some moving sob story, that person might decide to donate. If you had the everyone's-a-donor-by-default system, then that would be a lot less likely, but even then it might even get someone who opted out to opt back in. Question: Am I right in assuming that I became an organ donor when I got my driver's license and said "ok"? Is there more to it?

[togolosh]

Hilzoy - what do you think about proposals to give priority to recipients who signed up as donors before they became ill? I rather like the idea, but I'd be interested in hearing some of the pro/con arguments.

[CaseyL]

I have the "Yes" on my driver's license; I'm not on any living donor list. Actually, until hilzoy's post, I didn't know there were such things, except for things like rare blood types, and ova. ( I don't have a rare blood type, and I'm well past the age to be donating my eggs.)

I once offered to be a surrogate mother to a close friend, back when she and her then-husband wanted a kid but her health at the time wouldn't allow it. (They didn't take me up on it.) But that was for a close friend.

I don't think I'd give up an important-though-spare organ to anyone but a close friend, or a relative. I have great admiration for those people who donate kidneys and pieces of liver and so on to strangers. But I think the only way I'd do that for someone I don't know would be if I found out that some public figure I adored and respected (artist, writer, scientist, etc.) needed it. In other words, there would still be some kind of personal connection, some utilitarian reason, not just compassion.

I would, therefore, be in the category of "People Donating Who Would Not Otherwise Do So."

However, I would never, ever, not for one hot second, troll the internet to see who I could sell my organs to! That's what really squicks me about this: the ultimate commodification of the human body.

The idea that organ donations go to them-what-can-outbid rather than to them-what-most-needs is incredibly repugnant to me. I realize I'm hopelessly old-fashioned about this.

(What I'm not hopelessly old fashioned about is the cloning issue. Spare organs are the biggest reason I'm very gung ho on cloning: it solves the availability problem and the rejection problem. Everybody should have their own spare parts, grown from their own cells, in cold storage.)

Until then, I have to agree with Brock. However much I dislike the practice, it does seem that people who are willing to donate their organs for a price are not in the same set of people who are already on a living donor list. They increase, rather than decrease, the universe of available organs.

[rilkefan]

Everybody's got their thing - I find him vitriolic in response to atheism, or rather to disagreement with the religious worldview; and his reaction to the Tookie Williams matter was approximately, "Maybe he didn't commit the acts he'll be executed forma but he committed plenty of others so who cares", which is shocking to liberal piety about fair trials.

Questions about organ donation for the bioethicists out there - if you received hGH as a child, you can't give blood - can you be an organ donor? What if you have reason to believe your hGH supply was clean? What's the life expectancy for organ receivers - obviously organ dependent? CJD turns up on average 20 years after hGH treatment (if at all), so maybe it's a good deal for the recipient regardless - or maybe it would be a good idea to specify "critical organs" only on one's donation form.

[Phoenix]

IMHO, it would be inhumane to let anybody sell their body parts alive, as a means to redeem themselves financially. That puts us in the Petri dish of Capitalism. That being said, I'm sure there is a thriving industry in selling body parts, already, even without the article on the Saipan fiasco. I'm also certain that science is quite close to being able to cause organs to regrow themselves.

[nadehzda]

Why the hostility toward bioethicists? I don't have strong feelings, and it's certainly not a topic I give much thought to. But I think it's fairly easy to explain an erosion with the general public of the credibility of "bioethics" as a profession with agreed standards and terms of inquiry.

I'd ascribe the hostility to the growing sense (mostly on the left, but probably also on somewhat on the right) that those who hold themselves out publicly as experts in the field aren't contributing to clarity that could serve as the basis for considered action but are just making it up as they go along to justify personal preference and political bias. Leon Kass, whose "ethical" pronouncements seem to be founded increasingly on cultural aesthetics and to suffer from mission creep, hasn't done his cause much good. And arcane stem-cell research debates have also not done much for the profession's reputation. More broadly, the politicization of the President's Council has also damaged the reputation of bioethicists as a group.

[DaveC]

Well certainly you can sell your hair, or plasma to whoever is offering the highest price. And thay is in no way conssidered unethical. Now it seems like most blood donations are unpaid, and perhaps the quality of the supply is better, but the supply would be larger if blood donations were for pay. Why not then bone marrow or even skin as well? These would be pricey, but skin and bone marrow can be grown back. The trick is how to do it without the risk of farming human beings. This doesn't address the issue of selling entire organs, but is something to think about in comparison.

[DaveC]

I also think that the government generally keeps out of the funding for blood donors. Why cannot donated stem cell lines be increased by an NGO without government intervention until which time either a large private organization can do research without govt funding. I assume that at this time the holdup is that the researchers are in public universities that are govt funded.

[liberal japonicus]

The future is now

Ignorant of the risks of such an operation, especially when performed by who-knows-who under who-knows-what conditions (in the movie, it's a hotel room), those who allow a kidney to be taken and sold are usually poor and desperate. In one area of Madras, India, locals refer to a certain neighbourhood as "the kidney district" because so many people there have sold their organs. In parts of the Phillipines, the removal and sale of a kidney is seen almost as "a coming of age" experience by young men. There's even an urban myth about the American guy who is mugged in Brazil, passes out and comes to with a 17-inch stitched-up scar from where his kidney was stolen.

Perhaps someone might have some other links to debunk (or bunk) these points.

[DaveC]

In one area of Madras, India, locals refer to a certain neighbourhood as "the kidney district" because so many people there have sold their organs.

In parts of the Phillipines, the removal and sale of a kidney is seen almost as "a coming of age" experience by young men.

This seems a little fishy to me. I didn't think that kidney transplants were that common, or that many hospitals allow transplants with organs purchased on the black market in other countries. I suppose that there are quite a few surgeons who do transplants in India, but would be surprised if there were such a homegrown demand. Can there be that many surgery tourists?

[rilkefan]

I've read that surgery (not necessarily for transplants) in India and other countries is a growing industry - you get a steep discount, more personalized service, and an exotic vacation. Dunno if growing means "ten people did it last year, 15 this year".

[washerdreyer]

Hilzoy -
I know you're not too protective of your pseudonym, but his most recent post makes you totally googleable. I should really be studying for my Federal Income Tax exam rather than worrying about this.

[DaveC]

Shut up washerdreyer. Nobody else knows Hilary Duff is posting here. Let's keep her to ourselves.

[platosearwax]

Washerdryer:

I can't remember why (I think it had something to do with looking up something on ethics) but a month or two ago I did some googling and it took me about 5 minutes to find Hilzoy in her real life incarnation. It's kind of weird that Kleinman just posts it though.

I'm sure I could be found pretty easily, but the results would be disappointing and inconsequential.

[washerdreyer]

but the supply would be larger if blood donations were for pay

My understanding is that this is a very questionable empirical position (not that it's been proven wrong, but that it's very far from having been proven right). See works cited in Benkler, Sharing Nicely (.pdf). Run a search for "blood", since I don't feel like doing a pin cite.

[matttbastard]

rilkefan:

Here's some background on so-called 'medical tourism'

[Matt McIrvin]

I think nadezdha got it: the vitriol is almost certainly because of Leon Kass. He's the name that pops into my head when I hear the word "bioethics", because of the Bush administration.

[Kevin T. Keith]

[I]f [holding "Queen for a Day" contests for vital organs] 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.

That would indeed be a problem. But I am not certain these appeals are not a problem even if the charisma contest does not intrude on the supply of organs otherwise available. That is, even if these appeals result in a net increase in the number of organs donated, there may still be reasons - grounded in considerations of equity - to oppose them.

For one thing, even if these public appeals affect only those who would not have donated without the appeal (unlikely), and thus increase the overall supply of organs without drawing a single donor out of the existing supply, they will still distort the distribution of organs to those on the medical waiting lists. The result of these appeals will be that the most heart-tugging patients will essentially be allowed to compete on two waiting lists - receiving organs from the "ordinary donor" pool when their medical need is great enough, or receiving organs immediately if their appeal strikes the fancy of a potential "extra" donor (or donor's family) - while less-heartwarming patients will remain only on the medical-necessity list.

This isn't necessarily terrible: the total number of organs transplanted would go up, and the average waiting time on the medical-necessity pool will go down as the attractive, heartwarming patients are lifted out of it by teary-eyed benefactors. But it does mean that we would essentially have a two-tiered distribution system in which patients who are judged attractive enough, or whose stories are moving enough, will get to move to the head of the line whenever they can convince someone to pick them out as specially deserving. (Yes, we already do have a slightly two-tiered system, in that people can make directed donations to friends or relatives, but this is far different from a nation-wide contest for "Miss Renal-Failure America".) Even if there is a net benefit (more transplants), and even if there is, to some degree, a universal benefit (lower - but unequal - waiting times for everybody), it does not immediately follow that this is a desirable outcome.

It's not obvious that the benefit of more total transplants outweighs the harms of inequitable distribution. If the net increase in lives saved were great enough, it would take a very strong committment to strict egalitarianism to reject those benefits - but if the net increase were small, that might not be a great enough benefit to warrant adopting an organ-transplant system modeled on, essentially, begging.

In addition, the appeals system will further distort the medical-necessity distribution by, undoubtedly, moving some potential donors from freely donating to anyone with greatest medical need to donating to specific recipients on the basis of special appeals. That is, even if the net total of organs donated is increased, it is likely that some of those responding to appeals will be those who would have donated otherwise - thus reducing the pool of organs for distribution by medical need. (Hilzoy, above, contrasts "increas[ing] the supply of donated organs" with a situation in which "the people who agree to donate to someone whose story they read on the internet would have donated their organs anyways" - but you can easily get both these outcomes if the appeals attract some who would have donated anyway and some who would not have.) This makes the relative likelihood of getting a transplant even worse for those who are stuck on the "ugly stepchild" list, even if the greatly-increased good luck of the beautiful and heartwarming patients produces an overall net benefit.

Consider as well that the distribution through the pleading system will also certainly not be equitable. The appeal system, as Hilzoy notes, favors those who can make the best case for themselves, but this is not itself an equitably-distributed trait. Having access to computers and crafting moving appeals obviously favors people with certain social/educational advantages, but that's not all. The appeals will inevitably trigger existing social prejudices as well: even correcting for inequities of circumstance and self-promotional ability, it is unimaginable that donations will be distributed equally by race, sex, or age - our society does not regard equally-situated persons who differ in those characteristics alone as equally appealing. So, in adopting the appeals system, we are adopting a system that grants free "Heaven Can Wait" cards to cute, limpid-eyed, blond, white girls with "good" (socially approved) diseases irrespective of medical need, and tells adults and seniors, most boys, most people of color, and anyone in jail, non-English-speaking, or who has a "dirty" disease that they can just take their chances. It's not clear that that system - even if it produces a net increase in lives saved - is one that we want.

Recall that it was precisely for reasons of avoiding socially-prejudiced resource allocation that Congress approved universal coverage for kidney dialysis. I don't know if we want to stick to that principle if it means limiting, not increasing, access to vital treatments, but I do think that a mere net increase in total resources, inequitably distributed, is not necessarily an unquestionably desirable policy.