blog.bioethics.net

Dr. Johnson suggests focusing on "practical policy options". Here's one -- allocate donated cadaveric organs first to registered organ donors. UNOS can implement this policy option with the stroke of a pen. It's already done something similar for living organ donors.

Giving organs first to organ donors would convince more people to donate. Americans bury or cremate 20,000 transplantable organs every year.

In the face of UNOS inaction on this, LifeSharers has implemented this policy on a grass-roots basis. Anyone who wants to donate their organs to other organ donors can join LifeSharers at www.lifesharers.org. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition. Membership is free.

- by Dave Undis on Jul 24, 2009 at 8:17 AM | link

We should find out how living donors have done before we charge into new ethical frameworks

http://www.reportingonhealth.org/resources/lessons/live-organ-donations#

No one knows what donors experience 20 years post donation because donors are not tracked. If the system can't take care of current donors what's going to happen when they're seen as profiting from giving up their kidney? This really hasn't been thought through.

- by Bill on Jul 25, 2009 at 12:11 PM | link

I wrote a civil (far more civil than this semi-coherent post), on-topic comment. Why isn't it here?

Bottom line: If you want to know what I propose, don't rely on a years-old blog post selectively quoted by The New Yorker (most of it was actually about the NKF's sleazy use of statistics). Read my recent article on The Atlantic Unbound: http://www.theatlantic.com/doc/200907u/kidney-donation

- by Virginia Postrel on Jul 29, 2009 at 2:23 PM | link

Virginia Postrel, a succinct, coherent and persuasive writer (not only in my opinion but, she points out, in her own), does me the favor of pointing out the holes in my relatively simple claim about her latest essay in the Atlantic. The piece, which would better have been titled "My altruism on the transplant table and what you can learn from it," is itself fairly straightforward. Anyone in bioethics will know the classic arguments of Titmus, advocating the importance of a "gift relationship," or Hans Jonas' analogous arguments about the importance of voluntarism of research subjects. But that's bioethics. Postrel's argument is written for a broader audience, and she is not a bioethicist, so she begins from two positions that will be recognized by anyone in bioethics as abhorrent, but on the strength of intuition alone sound not just persuasive but moving. It is no wonder Ms. Postrel is so unhappy with me; she has shared her story of giving to another, and in that context the importance of giving to others more generally. She shares in a way that makes it seem almost profiteering to consider any form of organ sale or other compensation for bodily materials, even if she does not agree with that view herself. I must appear not only incoherent but unsympathetic. I'll take the first bullet; when Virginia Postrel says that your writing is below board, you listen. But the second claim - couched in the language of my "attacking her," is nonsense on stilts. Postrel's use of the idea of altruism to make of herself an example for us all is, well, totally equivocal. It is true that in the science of ethology, altruism has been used to refer to ANY behaviour that increases the fitness of one individual while decreasing the fitness of another actor. That's what altruism is in Postrel's story. She gives her kidney to her friend. But this isn't what altruism means in her argument, for that matter her writing on directed donation or the sort of proposals for "donor pools" or required request or opt-outs. There, altruism is set up as giving organs to ANYONE. Doing a favor for a friend, well, it is to be lauded. Women give eggs to their daughters and mothers, brothers and fathers and mothers and daughters give bone marrow. Such gifts can hurt, be risky and are almost always shifts in the lives of all involved and involve courage and nobility. But they are not gifts to the random man who lives in Cleveland. It is just a different sort of gift entirely, and the entire discussion in organ transplantation qua compensation is about whether or not thousands will die waiting for, e.g., kidneys - not because there are not enough people out there to make altruistic donation, but because those who oppose compensation of any kind would make their incredible and poetic gift to a stranger in Cleveland instead of a person from whom they derive enormous benefits of friendship or relation or parenthood or other association. Is Postrel selfish? Look, I've never given so much as an egg to a friend or stranger, and I won't wax benevolent or argue for Titmus. I make no claims from intuition about what I learned on the transplant table. But that's the point, right? What we need to know - and what many are studying - is whether what is called for in order to keep people from needlessly dying is a jeremiad from personal experience, or instead self-reflection about how well one would have had to know Ms. Postrel - or me - or you - and how much we'd need to love or respect or just generally want someone to live - before we'd give them a kidney while we are still using it. I think that intuitionism is usually the most persuasive sort of argument because it relies, with all due respect, on nothing but an intuition. If the intuition collapses, so does the argument. Here, were she, or I (if I could muster her coherence without her intuitionism), to give something painful to a stranger - and prove it to be contageous and viable as public policy - and likely as personal practice, we could make the argument that John Stuart Mill once made in his Utilitarianism (and Spock made in The Wrath of Khan): the needs of the many outweigh the needs of the few, or the one. It isn't hard to teach - unless the many are strangers, and our other option is to help our best friends and family. We won't save thousands every year with an altruism that amounts to love of our intimates.

- by Summer Johnson on Jul 29, 2009 at 4:17 PM | link

Virginia Postrel, a succinct, coherent and persuasive writer (not only in my opinion but, she points out, in her own), does me the favor of pointing out the holes in my relatively simple claim about her latest essay in the Atlantic. The piece, which would better have been titled "My altruism on the transplant table and what you can learn from it," is itself fairly straightforward. Anyone in bioethics will know the classic arguments of Titmus, advocating the importance of a "gift relationship," or Hans Jonas' analogous arguments about the importance of voluntarism of research subjects. But that's bioethics. Postrel's argument is written for a broader audience, and she is not a bioethicist, so she begins from two positions that will be recognized by anyone in bioethics as abhorrent, but on the strength of intuition alone sound not just persuasive but moving. It is no wonder Ms. Postrel is so unhappy with me; she has shared her story of giving to another, and in that context the importance of giving to others more generally. She shares in a way that makes it seem almost profiteering to consider any form of organ sale or other compensation for bodily materials, even if she does not agree with that view herself. I must appear not only incoherent but unsympathetic. I'll take the first bullet; when Virginia Postrel says that your writing is below board, you listen. But the second claim - couched in the language of my "attacking her," is nonsense on stilts. Postrel's use of the idea of altruism to make of herself an example for us all is, well, totally equivocal. It is true that in the science of ethology, altruism has been used to refer to ANY behaviour that increases the fitness of one individual while decreasing the fitness of another actor. That's what altruism is in Postrel's story. She gives her kidney to her friend. But this isn't what altruism means in her argument, for that matter her writing on directed donation or the sort of proposals for "donor pools" or required request or opt-outs. There, altruism is set up as giving organs to ANYONE. Doing a favor for a friend, well, it is to be lauded. Women give eggs to their daughters and mothers, brothers and fathers and mothers and daughters give bone marrow. Such gifts can hurt, be risky and are almost always shifts in the lives of all involved and involve courage and nobility. But they are not gifts to the random man who lives in Cleveland. It is just a different sort of gift entirely, and the entire discussion in organ transplantation qua compensation is about whether or not thousands will die waiting for, e.g., kidneys - not because there are not enough people out there to make altruistic donation, but because those who oppose compensation of any kind would make their incredible and poetic gift to a stranger in Cleveland instead of a person from whom they derive enormous benefits of friendship or relation or parenthood or other association. Is Postrel selfish? Look, I've never given so much as an egg to a friend or stranger, and I won't wax benevolent or argue for Titmus. I make no claims from intuition about what I learned on the transplant table. But that's the point, right? What we need to know - and what many are studying - is whether what is called for in order to keep people from needlessly dying is a jeremiad from personal experience, or instead self-reflection about how well one would have had to know Ms. Postrel - or me - or you - and how much we'd need to love or respect or just generally want someone to live - before we'd give them a kidney while we are still using it. I think that intuitionism is usually the most persuasive sort of argument because it relies, with all due respect, on nothing but an intuition. If the intuition collapses, so does the argument. Here, were she, or I (if I could muster her coherence without her intuitionism), to give something painful to a stranger - and prove it to be contageous and viable as public policy - and likely as personal practice, we could make the argument that John Stuart Mill once made in his Utilitarianism (and Spock made in The Wrath of Khan): the needs of the many outweigh the needs of the few, or the one. It isn't hard to teach - unless the many are strangers, and our other option is to help our best friends and family. We won't save thousands every year with an altruism that amounts to love of our intimates.

- by Summer Johnson on Jul 29, 2009 at 4:17 PM | link

Thank you for posting my comment. I'm sorry it took two attempts to get through your filters. I hope this comment will fare better. This is an important subject and deserving of further discussion.

I'm not even sure that Summer Johnson and I disagree on the point she's making. I completely agree that my donation was not altruistic and have said so on many occasions. It was a practical act to help someone I cared about. I reaped plenty of benefit from it. I do not consider it a big deal.

As I point out in my Atlantic Unbound article, most kidney donors are not altruists but people helping friends and family. Here is the relevant paragraph in my article (which is a reported piece that only mentions my own donation in the credit, and then only at the insistence of the editor):

The National Organ Transplant Act forbids offering “valuable consideration,” generally construed as cash or an equivalent quid pro quo, for an organ. But very few people are willing to give someone a kidney without getting something in return. Last year, 106 people anonymously donated kidneys to transplant centers as nondirected donors; a few more gave kidneys to people they’d met online but hadn’t previously known. But almost all living donors are helping a relative or friend. Although many people call these donations “altruistic,” they in fact offer donors a substantial benefit: saving someone they care about.

Here is the article in full: http://www.theatlantic.com/doc/200907u/kidney-donation

Several years have passed since I wrote the blog post quoted in The New Yorker. While I still agree with the sentiment expressed, Kieran Healy's Last Best Gifts has made me more sensitive to the difficulty of persuading grieving families to agree to deceased donation (and also to the effectiveness of better management of that process). Because these decisions are made quickly and in such an emotionally charged environment it's an open question whether burial benefits or other rewards would motivate more families to make that decision. My primary interest is in encouraging living donation: altruistic or non-altruistic, paid or unpaid. The most important passage in my Atlantic Unbound piece is this one:

To end the list, we first have to give up the idea that “organ donor” means someone dead. Deceased donors are, of course, essential for hearts. But not for kidneys. And not enough people die in exactly the right way to meet the need for kidneys. The best estimate is that there are between 10,500 and 13,800 brain-dead potential organ donors each year. More than half already become donors, and not all their kidneys can be used. If every single person who died the right way became an organ donor, an optimistic estimate would be that 7,000 more kidneys a year would be available for transplant. Since the list is now increasing by 6,000 a year, that would be enough to end it—in 80 years.

And even those numbers understate the problem. Though the list is inflated with “inactive” patients who aren’t healthy enough for transplants at the moment but don’t want to lose their place in line, it does not include a host of others who would be good transplant candidates right away—nearly another 80,000, estimates a study published last year in the American Journal of Transplantation. “The potential need for kidneys is a lot greater than the waiting list itself,” says Arthur Matas, the director of the renal-transplant service at the University of Minnesota Medical School and a past president of the American Society of Transplant Surgeons.

Eighty years or 160 or merely 40. Whichever you pick, the number of deceased donors will never be enough. Any sense of urgency inevitably leads to the same conclusion: we need a lot more living donors.

- by Virginia Postrel on Jul 29, 2009 at 8:07 PM | link

OK, now I get it. Summer Johnson confused me by suggesting that I regard my own donation as altruistic, which I don't. My use of "altruism" is consistent. You may hate it, and I know it is not the way ethologists use the word, but I am making a distinction that is rather important in the way donors--not just me, but the many donors I've interviewed--tend to regard their gifts to loved ones. (And I'm not even getting into those cases where people feel duty.) My views of the matter are not based on my own experience, which isn't even mentioned in the article, but on reporting and economics.

- by Virginia Postrel on Jul 29, 2009 at 9:02 PM | link

Organ donors run risk of being denied health insurance.

- by Cpr certificate on Aug 18, 2009 at 2:48 AM | link

It amazes me that Ms. Postrel and her ilk continually ignore the lack of protection, respect and consideration given living donors. In the U.S. there are next to ZERO laws regarding living donation and donors. While UNOS/OPTN and CMS/Medicare can issue 'guidelines' and 'rules', compliance is voluntary and enforcement/punishment is practically non-existent. Legally, living donors are regarded as deceased donors who breathe and annoyingly ask questions. They are given flawed Informed Consent and no aftercare, discarded on the curb the moment the needed organ is removed.

Ms. Postrel claims to "encourage living donation" but only to benefit recipients. Diabetes is the biggest kidney killer in the U.S., and many types are preventable and treatable; yet, she believes that healthy people (aka living donors) are supposed to compromise their phyisical and psychological well-being for people who have taken no responsibilty for their health. Hypertension is the second largest kidney killer in the U.S., most often brought on by obesity-related issues; again, Ms. Postrel would have us believe that their irresponsibility is secondary to living donation's risks.

Unless Ms. Postrel, personally, is willing to pay for the medical and mental health services the recipient's insurance won't pay for, or for the hypertension and ESRD the donor's insurance considers "pre-existing", her stances are repugnant. Many transplants are unsuccessful, and most recipients will need more than one throughout their lifetime. Exactly how many living donors must be sacrificed for each recipient? How much less valuable are we than the 'sick' person?

- by LivingDonor101 on Sep 22, 2009 at 12:33 PM | link