Tue May 22, 2012
The Ethics Of Compensating Organ Donors
Originally published on Tue May 22, 2012 3:06 pm
NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan, in Washington. Each year, too many people die waiting for a transplant. Just about everybody agrees that the current system to distribute organs is both ethical and fair, but it simply doesn't provide enough, and some argue it's time to change.
A federal law makes it illegal to buy or sell organs for transplant. This month, an opinion poll by NPR and Thomson Reuters finds that about 60 percent of Americans would support modest compensation. The survey asked about kidneys, bone marrow, parts of a liver, organs that can be removed from the living.
If you checked off the donor box, would you consider selling an organ? We would also like to hear from those of you on the waiting list: Would you consider buying one? 800-989-8255. Email us: email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later in the program, President Obama disappointed young voters and created do-it-yourself politics - at least according to an op-ed writer. But first, we start with NPR's Scott Hensley, host of Shots, NPR's health blog, and he's here with us in Studio 3A. Nice to have you on the program.
SCOTT HENSLEY, BYLINE: Great to be here, Neal.
CONAN: And 60 percent sounds like a big number, but it comes with some conditions.
HENSLEY: Yeah. We asked, as you pointed out, about the donations you could make while still alive, and we also asked what kinds of compensation. And the majority, the 60-percent number that you referred to, applied to people getting a credit for some kind of future health care needs, like insurance or some other kind of care that they might require.
When it came to cash compensation or tax credits or even tuition reimbursement, people weren't so keen on that. That only got in the 40-percent range.
CONAN: Were people aware of the shortage of organs that is the genesis of this question in the first place?
HENSLEY: We didn't ask specific. We assumed that they were. I mean, we talked in the introductory remarks about the need for these organs. But I think every day we hear of stories about people who are either looking for an organ or who are really suffering because they don't have one.
CONAN: And the other forms of compensation that were considered, they got less support, about 40 percent.
HENSLEY: Yeah. And cash also was the case. We asked, you know: Could you conceive of somebody getting paid some cash money for this? And that was also in - below a majority.
CONAN: And you also asked about different amounts that people might consider, and the largest support was for the - under $10,000.
HENSLEY: Yes. And if you put together that and the next category, the majority of people would say less than $25,000.
CONAN: So as you look at these findings, it is a challenge to the system, because some people say if you start providing compensation of any sort, you're going to undermine the system of altruism that we have now.
HENSLEY: I think that's exactly right. That's the concern, that if you did some form of compensation, would the whole thing crumble. As imperfect as the system is now because of the obvious shortages, if you started to offer these kinds of incentives around the margin, I mean, what would the effect be on behavior of people who are already agreeing altruistically to donate something? I wish we'd have asked that question.
CONAN: And there's also the slippery-slope argument. Once you say, well, there's a shortage. We have to provide compensation to get more organs. If that doesn't provide enough more organs, well, then, don't you up the compensation?
HENSLEY: That's right.
(SOUNDBITE OF LAUGHTER)
HENSLEY: Yeah, I mean, where do you stop? And I think one of the things that we asked about here may be a test case, which is bone marrow, which can now - bone marrow cells that people might need to rebuild their blood systems.
CONAN: After leukemia, for example.
HENSLEY: Yes, they can now be extracted from circulating blood. And there has been a recent court decision in the Ninth Circuit that said, well, maybe compensating people for that kind of donation wouldn't run afoul of the federal law banning the payment for organ donation.
CONAN: Because you can already sell your blood.
HENSLEY: Plasma for sure, yeah.
CONAN: So this is just an extension of that, but yes, you're getting into very gray areas, here.
HENSLEY: Yeah. I been - and I think people have tried so many of the obvious solutions, and, you know, recently we've had Facebook get into the act, where they've said, look. Let people know about your decision to become an organ donor, and they've provided information that if you want to do that, they'll direct you to the appropriate registry.
So I think there's this recognition, just about anybody who's involved in the process, that we need to try and think about new ways of solving the problem. That's what prompted us to ask about it, was: Is it time to revisit some of these things and figure out, well, would people support a different approach?
CONAN: And what's been the response since these findings were published?
HENSLEY: The post was very popular and we've had a tone of comments, having this kind of conversation about what would make sense. I'm very eager, actually, to hear what your listeners have to say today about, you know, how they would feel about this.
CONAN: It's interesting. We got this email from Jenny in Roland, Arkansas: Yes, I would sell an organ. I'm a registered organ donor and have arrangements for my body to be donated to science. I am hesitant in making these gifts due to the fact that others will profit from the skin of my back. It's only fair that I should get a portion of the proceeds.
While I feel very comfortable with this disposition after death, giving organs and tissue while alive does not add value in making my life better. Some financial consideration would give me incentive to go through the inconvenience and possible risks.
HENSLEY: Very fair points. And I think when I talked to Dr. Youngner from Case Western for the post and the reporting that I did around this, he mentioned just this issue, that, you know, the person who's giving the organ doesn't get a real benefit. But up and down the chain through the health care system, the doctors are paid, the hospital is paid, and clearly the recipient gets a major benefit. Would it be so wrong? Is it wrong to exclude entirely any form of benefit to the person who's going to make this sacrifice?
CONAN: Tangible benefit. You get a spiritual benefit.
HENSLEY: Right. Totally. I mean, I don't want to underestimate that. I think it's marvelous and clearly has motivated thousands and thousands of people to participate so far. So let's not ruin that. But what about this other piece?
CONAN: We're talking with Scott Hensley, the host of Shots, NPR's health blog. And joining us now from member station WCPN in Cleveland is Dr. Stuart Youngner, professor of bioethics, psychiatry and cognitive science at Case Western Reserve University, also chair of the Department of Bioethics at the school of medicine there. Good of you to be with us today.
STUART YOUNGNER: It's good to be here.
CONAN: And I read in Scott Hensley's blog that - in his post that, over the course of the years, the continued and indeed growing shortage has forced you to reconsider some of these issues.
YOUNGNER: Well, I'm not sure it's the shortage that's forced me to reconsider it, because I think there are still some things we wouldn't do to eliminate the shortage. But I teach bioethics, and many of my students have written papers about this issue. It's one that seems very interesting to them. And I've noticed that a majority of them are in favor of some form of regulated market in organs.
And I traditionally haven't been in favor of that, but their arguments seem very convincing to me. And not that we're necessarily ready to do it, because as you indicated, this is a very delicate balance, and you could tip things so that you actually turned off altruistic donation. So it's one of these things that would have to be an experiment, and perhaps a perilous one.
But that's a utilitarian argument - you know, in other words, will it work to get more organs. Another question is: Even if it did - for instance, would we say, well, we could get more organs if we went to another people - another country and killed people to get them, that would work. But that would be unacceptable.
Many people feel that paying for organs is unacceptable in almost the same way, that it is some kind of a fundamental violation of human dignity, a profanation of the body, that it cheapens human life in some way to attach a monetary value to a human body part. And that argument has been, I think, very, very powerful over the years, but isn't as powerful - at least in my observation - to the young people.
And I think that the survey that you've conducted supports that notion, too, that it's somehow a more acceptable thing for young people.
CONAN: Yes. And I think in the interview that you gave to Scott Hensley, you said those are all valid concerns. So are concerns about people's lives that are being lost from the shortage of organs.
YOUNGNER: Exactly. And I think that what happens in societies, and culture in general, is that as time goes by and society evolves and there new needs and new relationships, that we reconsider our moral categories. A great example of that - it's a parallel example, not the same issue, of course - is gay marriage, where the attitudes are changing, and they're changing fastest among young people because they're experiencing a society where people are out of the closet, where they see that there aren't - don't seem to be terrible harms to being gay or to being in a gay relationship.
We don't have a similar experience with selling organs, but we do have an experience with selling blood or blood products. And as you indicated, the market is the metaphor in the United States these days, for so many things. And in organ transplantation specifically, there are lots of people making money. And there are lots of people - which isn't bad.
I think if they stop making money, the organ transplantation enterprise would come to an end. We're motivated by making money. That's something that we've accepted as an integral part of our economic and political system. But why are the families excluded from that, or the donors themselves from living donation? Why are they excluded?
CONAN: And interesting, Scott Hensley, you did ask the people you questioned, the 3,000 you questioned in the survey about their age and income and other factors, and there was a variant in terms of - by age.
HENSLEY: Right, support for compensation declined as people - among older people, particularly among the group that was 65 and up. And with education, there was generally more support for it - a higher education, more support.
CONAN: So younger, more supportive of the idea.
CONAN: Yeah. And as you looked at the survey, Dr. Youngner, did we ask the right questions?
YOUNGNER: Well, the one question you didn't ask was to say: Are you a donor? And people say yes, and say would you still be a donor if you - if we started compensating people for this? And the email that you got, you read, somebody said, well, I am a donor, but I would be happy to get money. But there may be donors who would say, well, you know, you've been talking for the last 20, 30 years about the gift of life and how altruism is so big a part of this. Now you're going to pay people for organs. What's that all about?
CONAN: Should we pay for organ donation? Sixty percent said yes, under specific circumstances, in the recent NPR Thomson Reuters poll. If you checked off your donor box, would you consider selling an organ? Give us a call: 800-989-8255. Email: firstname.lastname@example.org. We would also like to hear from those of you on the waiting list: Would you considering buying one? Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. We're talking about the NPR Thomson Reuters poll that showed a majority of those asked supported compensation for some types of organ donations if the payment came in the form of credits for future health care. About 40 percent supported cash payments.
It is, as we mentioned, illegal to buy or sell an organ for profit. Still, this raises all signs of questions about ethics, fairness and access. If you checked off the donor box, would you consider selling an organ? We'd also like to hear from those of you on the waiting list, 800-989-8255. Email email@example.com. Click on TALK OF THE NATION.
Our guests are Scott Hensley, who hosts the NPR health blog Shots; and Dr. Stuart Youngner, who chairs the Department of Bioethics at the School of Medicine at Case Western Reserve University. Let's get some callers in, and this is Doug(ph), Doug with us from Las Vegas.
DOUG: Hi, how are you today?
CONAN: Good, thanks.
DOUG: Good. You know, I actually just had my third kidney transplant just over a year ago, and this third one was a lot harder to find than the first second ones, just harder to find a match, et cetera. And, you know, we did explore options of even as far as going overseas to find a kidney, and it was pretty shady, and I know a lot of the overseas studies are on lower-income people with no medical care in these third-world countries.
But I'm in strong favor of being able to pay donors, I don't think directly from the recipient, but just like plasma kind of goes through an in-between, the hospital, and it should be picked up by the insurance. Medicare, for example, which covers most end-stage renal disease, they'll pay for dialysis, which is roughly $70,000 a year, give or take, a transplant's going to call them $110,000, $130,000, something like that. And so they're going to break even and have definitely much better quality of life, as I can testify to.
CONAN: And do you consider those who donated your kidney? Do you know who they were, Doug?
DOUG: My first one was my uncle, my second was a cousin, and the third one, we participated in one of those donor swaps. So we actually did meet the donor, but we just did a swap on the third one.
CONAN: And did you ever ask them, would they have preferred some form of compensation?
DOUG: You know what? I didn't, but the donor who was a family friend who donated on my behalf to this person's wife, you know, not that we would - I don't think she would have taken money, but just the travel expenses. She had to go back East. I went back East. The time that she had to take off work, there's some insurance issues that she could be considered pre-existing down the line, et cetera.
So I don't think I should be able to make a cash payment to her, just because maybe I can afford to, but either Medicare or the insurance, you know, they pay the (unintelligible) hospitals, wherever they get the organs from. They should be able to compensate the donors in some way.
CONAN: Doug, thanks very much, and I hope this one works out well.
DOUG: Thank you, I appreciate it.
CONAN: And one of the things you asked in the survey, Scott Hensley, was who ought to pay for this.
HENSLEY: That's right, and Doug's got company here because almost three-quarters of the people who were in favor of some form of compensation thought that it should come from the insurance companies. And then the lowest proportion thought that it should come from the organ recipients. That was less than 40 percent. So the strong majority was in favor of some sort of insurance payment, and the least support was for the organ recipients themselves making some kind of compensation.
CONAN: And Dr. Youngner, there - you talked about the market model. If there's a market model to the extreme, then it's open to the highest bidder.
YOUNGNER: Right, and I think there are very, very few people who advocate just an open, raw market to deal with this, where, let's say, donors could make patients bid for their organs. Regulated markets are a much more attractive alternative, where you have a fixed fee that people are going to get or payment that they're going to get, and that it's provided by a third party, which is either the government or an insurance company.
And, of course, with kidneys, Medicare does pay for organ transplant and dialysis, and people have done analyses that show over the long run, paying some amount of money, and I can't remember exactly how much it is, would actually be a cost savings for Medicare or whoever the payer is, if they're also willing to pay for dialysis.
The other question, you know, if you're talking about markets, is what does it take to get people to sell them. How much do you have to pay? And we really don't know that. It - there have been states that have given financial incentives, which are defined differently than payments, so they're - it's more, let's say, a token of appreciation, paying travel costs, paying for funeral expenses, and they don't - there are a couple states that have done that. It doesn't seem to have made much of a difference.
So then the question is: What would make a difference? Would it be $2,000? Would it be $20,000? And those are kinds of answers you can't find out until you allow the market to work. So let's say you started with $10,000 in a controlled market, and it didn't do much, then maybe you'd feel you have to go up, and at some point it wouldn't be cost effective.
The other thing I want to point out, I reviewed some statistics on the UNOS website this morning before I came in. And the rate of organ donation without incentives has actually dropped two percent since 2005. The waiting list has increased 23 percent during that period. So we are in kind of a pickle. And lots of things have been tried in the last six years, say, since the period I'm talking about.
The organ procurement organizations have tried lots of best practices and ways of getting people to, you know, to be more likely to donate. We have new forms of getting organs after cardiac death rather than just from brain death, which has been the traditional source. And we're taking organs that are sometimes referred to as marginal, from older people or people who aren't as healthy, that we didn't used to do before.
So we're kind of desperate. But despite those things, the rate of donation has not gone up, and I think that's worrisome. And there is a worry that if you started saying OK, we're going to pay for them, maybe that would backfire. I think there's - I think there's good evidence that we've - you know, giving organs and organ transplantation is a relatively new thing, and it changed - it hadn't been dealt with before.
And it steps on lots of interesting social traditions and ways of doing things, and there's a - so if it didn't run into social and cultural barriers, we'd have enough organs. So we've run into them, and we continue to run into them, and they're not that easy to change. Whether this would change it or not, I think - I don't personally think it would be wrong if it worked, but I'm not sure it will work.
CONAN: Let's go to Andrew(ph), Andrew with us from New Orleans.
ANDREW: Yes, my father is actually - we've been searching for a kidney for him. He had a car accident about 10 years ago, and it ended up killing his kidneys. And I know we're desperately searching and on the lists and have had no avail. But I know if we had the chance to actually buy one, you know, and get us off of that waiting period, we would jump all over the - jump all over it to get him the kidney.
CONAN: And I'm sure you've asked yourself yes, I'm sure you would, of course, to save your father. But then it's a system that allows those with means to get life-saving organs, and those without, to not.
ANDREW: I mean, I don't know if we would have the means, but, you know, if that was the option to make it happen quicker, we would come up with, you know, what it would take to do it. You know, if it means saving his life versus selling a car, you know, so be it. What is a car when you don't have your father around, you know?
CONAN: Oh, I understand your dilemma, Andrew, I really do. Is it an urgent question at this point?
ANDREW: I was just making a comment, and, you know, I completely support it, and I think it's, you know, a very good thing to happen and would be to happen.
CONAN: All right, Andrew, thanks very much for the call, appreciate it.
ANDREW: Thank you.
CONAN: Here's some emails, this from Diana(ph) in Modesto: Women who donate eggs and men who donate sperm are compensated. Surrogates are compensated. So we should compensate for organs. And Dr. Youngner, that does raise the question: We seem to pay for some and not for others.
YOUNGNER: That's right, and so it's - you know, as I said, it's a complex issue. I mean, we paid for human hair. That did never seem to be a problem. But organs seem to be somehow more dramatic, more perhaps identified with the person as a whole than some of these other tissues, and there has been this tremendous reluctance to pay.
CONAN: This from Sherry(ph) in St. Johns, Florida: My question would be, how would payments affect those economically disadvantaged individuals who needed kidney? Will it become a situation where those who can pay get a transplant, where those from poor backgrounds are left to die?
And that's one of the advantages of the current system, Dr. Youngner, is that it's eminently fair.
YOUNGNER: Well, it's eminently fair if you talk about kidneys. Not all organs are covered by Medicare or insurance, and the people who don't have insurance don't get them. So it's not like we have equity in organ transplantation any more than we do in the rest of our health care system, with, you know, the number of people we have uninsured.
So what - a fair system would be that a third party, which, in my view, should be something like Medicare, gives - pays somebody for your organ no matter what class you're in or how much money you're making. But that's, you know, part of a bigger health care debate that we're having in the United States right now.
I personally think that introducing a market where the people who have enough money to pay the people who are willing to sell for enough money, that that's (unintelligible) work would be, you know, would be a bad business for the United States. I mean, we're heading down that road in so many ways. This is one I'd hate to see us head down.
CONAN: Let's go to Taber(ph), Taber with us from Tucson.
TABER: Yeah. Hi. I've actually been on both sides of the issue. After an accident, I received ligaments in my knee - obviously, that was not from a living donor - and I've given bone marrow. And you know, the bone marrow decision was always an easy decision, but especially after being a recipient of a donation. You know, it made it much, much easier.
And so, you know, obviously, you know, finding an altruistic motivation is really important, but I happen to be between jobs, and all my expenses were covered for the marrow donation. But there are hidden expenses. You know, like if I've been employed, I might have missed some, you know, some hours at work. And so, you know, there are expenses associated with being a donor, you know, and obviously future medical expenses that could come up.
And so I certainly see it as a benefit. I think I personally would be against any kind of compensation for a deceased donor. But for living donors who actually have expenses and the like, I can definitely see some sort of limited compensation making a big difference.
CONAN: And, Taber, as I understand it, the extraction of bone marrow is a great deal less harrowing an operation than it used to be. Does that...
TABER: They do it both ways, yeah. They still do the - you know, where they pull it out of the bone. I had the particular one where they removed it from the bloodstream. But in order for that to happen, they have to give you a medication that causes your bone marrow to kick those factors out into the blood.
And just the effects of that medication - I have to take that for about a week - and it was a very painful experience because all of my bones - because my bone marrow was very, very active - all of my bones were very, very - you know, I had a lot of pain in my bones. And so, you know, yeah, it's a lot less invasive, but there's still a lot of pain and discomfort involved with that procedure.
CONAN: All right. Thank you. Appreciate the phone call.
YOUNGNER: Can I make a comment...
CONAN: Go ahead, please.
YOUNGNER: ...in response to that? I think one of the really important issues for living donors is whether they're paid or they're not paid, that they are subjecting themselves to what is otherwise an unnecessary invasive surgical procedure. And there are - you know, we don't have a donor registry - a national donor registry, so we really don't know how people are doing 30 years later with a lot of data.
We - there's the issue of unemployment, recovering from surgery. Are employers going to pay you if you're out for a month? What about getting health insurance in the future? There are many issues that are very important to people who are living donors, and we haven't paid enough attention to those, let alone ones that we paid money to.
So I think that's also on the list, before we start paying people, that we should have some kind of a national system for following them and making sure that they get the kind of care that they need, that their social lives and their work lives are not - they're not punished for this. And this is, you know, this is not a completed task yet.
CONAN: This from Ruth in Baton Rouge: What price can you possibly put on a life? I'm an organ donor mom, and we're very comforted in knowing our son helped six people 18 years ago. However, I do not think we would have accepted money for our donation then or now. I just wouldn't accept payment at all.
And this from Michael in Casper, Wyoming: Even though I'm an organ donor program participant on my driver's license, I would not be willing to sell any of my organs. As soon as I'm clinically dead, then they can have what can be of use. But up until that point, I will keep what I have no matter what the monetary compensation might be.
This from Malcolm in Olympia, Washington: I believe compensation would increase the number of available organs, but perhaps we need a different form of compensation. Rather than paying cash for kidneys, create a national database of potential organ donors. Then when someone needs an organ donation, give priority to those who've been on the database longer. Over time, more and more people would want to make sure their name is in the database as insurance against the possibility they might need an organ themselves. This puts all people, rich and poor, on a level playing field.
And Dr. Youngner, was that the kind of thing you were talking about?
YOUNGNER: I think that's a little bit of a different issue. That's the issue of whether donors should get preferential treatment if they end up needing an organ. And that - for living donors you could make an argument that if you gave a kidney and your other kidney went bad, that you should probably be - you know, because many people, it's one kidney that goes bad, not both kidneys - that you should, you know, be in a better position to get one. So that is - that's another issue that has not been resolved.
CONAN: And we just have a few seconds left, but as far as you've been able to see, Dr. Youngner, we see the need. We see questions. Do you see any urge towards - any actual movement towards a changed system?
YOUNGNER: I think that - I do think that we're going to hear more and more about this. I think the opposition is softening, but I don't think that we're going to see it in the next five years. It's going to take a while if it happens. It's going to be a while.
CONAN: Dr. Stuart Youngner, professor of bioethics, psychiatry and cognitive science at Case Western Reserve University, chair of the Department of Bioethics at the School of Medicine there, with us from WCPN in Cleveland. Thanks very much for your time.
YOUNGNER: Thank you.
CONAN: And Scott Hensley, thanks very much for prompting all of this with your poll with Thomson Reuters.
HENSLEY: I found the calls fascinating. Thanks for having me.
CONAN: Scott Hensley is the host of Shots, NPR's health blog. Transcript provided by NPR, Copyright National Public Radio.