Thursday, February 15, 2007
Session 4: Increasing the Supply of Human Organs: Three Policy Proposals
Staff Discussion Paper – Policy Proposals for
Council Consideration and Possible Action
DR. PELLEGRINO: Thank you very much.
The next topic we move on to is the question that has been percolating around since this morning at least on increasing the supply of human organs, and three proposals to look at or at least to consider.
And we've asked Dr. Dan Foster to open the discussion and then Leon Kass to also open the discussion, and then after both have completed, we'll open it to the general Council discussion.
Dan.
DR. FOSTER:How much did Leon pay you to have him come after me so I don't —
(Laughter.)
DR. FOSTER:— so I don't have to .-
DR. PELLEGRINO: Well, I'll tell you, Dan, it was substantial enough.
(Laughter.)
DR. FOSTER:One time a few years ago we always had — Gene Wilson, who is a [member of the] National Academy [of Sciences], and two of the Nobel Laureates at our school in my lab always met together. David Bilheimer was very famous because he was the first person to do all of the cholesterol movements in the intact body, but he showed a slide. This was a works-in-progress.
And Gene Wilson, who is a member of both the NAS and the IOM, was infuriated by the conclusions that he had on this slide. And I can't tell you exactly, but I'm going to say a T and you can think of a P, but David Bilheimer said to Gene Wilson, "Gene, if that last slide bothered you, this next one is really going to T you off."
(Laughter.)
DR. FOSTER:So I probably am a strong minority, and this might bother people here, but —
DR. PELLEGRINO: Go to it.
DR. FOSTER:Okay. When Dan asked me to make an introductory remark on the increasing supply of organs, he said I could be brief. And what he really meant was be brief. Okay?
I'm just going to run down the issues and come to the main one, which is the payment for organs. The first thing I want to say is about preventive medicine.
It's a good idea in principle, and it works. It worked in coronary artery disease because you had statins. You could take a drug and cut heart disease and heart attacks down dramatically.
But it's totally ineffective in many of the things we have to deal with. The biggest problem in medicine in the world right now is the complex of obesity and the metabolic syndrome in Type 2 diabetes.
Leon and I had breakfast this morning. It is now the leading cause of liver disease, in addition to kidney disease. The metabolic syndrome is the syndrome before you get full diabetes, and you have insulin resistance in the major tissues, muscle and adipose tissue.
So the pancreas tries to kick out a lot of insulin to overcome it, but there's no resistance in the liver, and so what happens is the liver just gets filled with fat, and without going into all of the reasons, it's called steatohepatitis and then cirrhosis of the liver and then cancer of the liver.
This complex is curable right now by losing weight. It's curable. Only five percent of people — this was a long study for ten years trying to lose weight — five percent of people could hold five pounds off in ten years.
So preventive medicine here is of no help at all. Allen Mark just published a paper which say we will never solve this problem until we find a metabolic statin that you can take a pill to either turn on metabolism and so forth.
So preventive medicine is in principle good. I mean, it's the same problem. Everybody says we've cut down on smoking. You can't do it in the bars. But cigarette companies are still making as many cigarettes and selling them in the country as before. I mean, where are they going? There's secret smoking, you know, that's going on here.
Okay. So I'm in principle for preventive medicine. It's not too helpful. I'm fine with paired donation, but I think federal funds to try to increase it is a waste of money. According to the chapter, we've had only 149 paired transplantations from 1998, if I got that right, 1998 to 2006. There's a reference there. That's all. That's all, 149, and we think we're going to give incentives, disincentives, you know, for other things, and I'm not so sure. I think there are, yeah, 62.
I'm against list transplants on the principle of fairness. I don't think it's right to push somebody else down the line because a paired donor didn't work. Only 62 of those have been done. So that's not a real problem, but I'm against the list program.
I'm in favor of donations from controlled cardiac death, but I think the estimates in the IOM and so forth, if you're going to get 2,000 of these, I think there have been 360 done. Something like that have been done.
The people that I talk to, the cardiologists at my medical school, and the intensive care unit people are extremely skeptical about this, particularly if you do it in the MICU. You have a lot more people die in the MICU than you do in the CCU, and they've all been through organ failure. You know, the kidneys have been killed. They're just not going to be donors that's going to be helpful.
So I'm in favor of it, but I'm skeptical of the observation that we might get 2,000 more transplants out of this.
Now to the main point. I've been conflicted about this issue of payment for organs since we started on this, but I think that these things are true. I'm going to say five things and maybe six real quickly.
In developed countries, the general rule has been that medicine and society attempt to prevent premature death in their populations in developed countries, populations in countries.
Now, an extreme example is Gaucher's disease for the transcriber, that's G-a-u-c-h-e-r. It sounds like "goucher" but it's "Gaucher's" disease. It's a rare lysosomal storage disease. And life for patients with Gaucher's disease can be extended by replacing the deficient enzyme, synthetic beta glucose cerebral sidase, which is marketed as Cerezyme, capital C-e-r-e-z-y-m-e, for the record over there. It costs about $170,000 a year in the United States and $167,000 a year in the United Kingdom for treatment of these people with Gaucher's disease.
And now the other lysosomal diseases are going to have synthetic enzymes that do the same thing.
I came across a recent report from the United Kingdom that the total cost of quality adjusted life year is as high. They gave two figures. The high figure for one year with Gaucher's disease of good quality life is $926,530 at the upper end, but the writer of the article says, "But in our society it's available and they will die without, and therefore, without this enzyme we will lose them, and we have an obligation to treat it." That's from the U.K.
Now, you might disagree with that, but if you're a family, just read their Internet places. You see the sorrow and so forth that is there.
Now, we've already decided that we want to try to prevent premature death in renal failure, and so we dialyze them, but that hasn't stopped the premature deaths because they don't die from renal failure. They die from overwhelming heart disease.
So if you're on dialysis, you're going to die prematurely, not as fast as you would if you didn't have dialysis, but you're going to die. And so the question comes: how important is it for us to prevent premature death in renal failure when we have the means to do it?
When you get a transplant, it's the difference between night and day in terms of health, and you cut the risk of heart disease. Now, I don't mean if you have hypercholesterolemia you don't have to give them a statin or something like that.
Now, on the grounds that this problem is so overwhelming, I mean, I'm not going to use the term "crisis" because people will not want to, but if you have 60,000 people waiting for kidneys, let's say, and let's say that 20,000 of them — I don't know what the number is. It's one of the things, as Mike said, we could study — but there's a bunch of them that are not going to be transplantable altogether because, you know, they're older people, as Leon was saying, and they've got heart disease.
So I don't know. Out of that 65,000, maybe 50,000 would be transplantable or maybe it is more than that. I don't know. We don't have those data, but not all of them are.
Nevertheless, the only way, the only way that we can in the short term overcome this problem is to pay for organs, and I don't think there's a soul in this room whether they want to do it or not thinks that that's — I don't think anybody here thinks that's not true, that if you really want to do it, you have to pay to have it done.
Now, as I told Leon at breakfast this morning, I'm not sure that payment for organs would, in fact, take away the shortage because there are going to be a number of people even if they largely come from lower middle class or the poor that are not willing to undergo surgery. A lot of people who are poor, they don't want to go to hospitals, and they don't want surgeons... cutting into them, and so forth.
I'm not sure. I think it will cut it, but I'm not sure that it will do it.
And then there's the other problem as Leon pointed out to me this morning. If it's true that this increase in renal failure is going to keep going on, that you may have just a short term solution. I mean, you might solve 40 or 50,000, you know, right now, but if it goes up to several hundred thousand you've got an additional problem just in terms of cost, whatever you're going to do.
Nevertheless, despite this because I'm absolutely convinced that this is the only solution, I have decided to stand in favor of a regulated market system to obtain organs for transplantation. I do that on the grounds that sophisticated societies have as a society the desire to prevent premature death in their citizens just as they have a role to defend them in wars and to keep battleships going and so forth.
The issue of the uninsured has been already said. If we had everybody insured, that would help a whole lot.
Now, do I have worried about this decision, about my decision? I'm not going to pass here. I know anyway, but do I have worries about it? Well, of course, because all serious ethical questions are gray. They're not black and white. It's not an ethical question that I'm not going to pull out a gun and rob Diana here. I mean that's not an ethical question.
All ethical questions are gray, and this is a gray decision, and I'm aware as we have said today that there are a number of Council members who believe that gifting of organs is of major importance, and that selling of organs might somehow rob humanity of dignity.
I have to say that I have never really understood that, but I'm sure it's because I'm more pragmatic and a physician, and I think on the grounds that we should stop premature death, and that a sophisticated society should pay for that, that the problem needs to be solved.
I might even argue — I wouldn't get away with it with Gil or anybody else — but I might even argue that others and individuals can give gifts, and I think a society can give gifts. And I think if our society gifted these people in a way that they could get off the dialysis, that that would be in some corporate sense equivalent to the love that somebody who gives a gift, you know, to a parent, a father, and so forth.
I think you might argue that that would not diminish humanity, but might even enhance it, but that's a personal opinion.
Now, one other thought that I think Bill brought up here about different kinds of transplants. The mortality rate for kidneys is quoted as a .03 mortality with morbidity at one to ten percent for kidneys. It's higher than that for liver.
The Chairman of Medicine at Southwestern, Greg Fitz, is a famed liver transplant surgeon. He thinks that .22 is low for mortality. So it's riskier because, as Bill asked me, usually you've got another organ there. So you take out a kidney, and the other one is going to grow. So it's not the same risk as it is.
So we're not doing policy, but I think if I were thinking about policy, I might argue that if the country ever decided that it was going to do this, pay for organs, then I might argue that we start out in a trial with kidney transplants and hold off on the lungs and the liver because of increased safety and risk from that standpoint. The same goes for a given part of your pancreas. I mean those are more dangerous.
So that's what I wanted to say. Okay.
DR. PELLEGRINO: Thank you very much, Dan.
Leon.
DR. KASS: Thank you.
First, I want [to make] a couple of preliminaries. I'm going to speak largely about policy option three, the cash payments for organs. I have no difficulty with option one either, with the paired donation or list donation, beyond some reservations about expanding live donation much beyond loved ones and near friends. The equity issues that are raised by the critics seem to me small in comparison with the achievable benefit of donation, which is obstructed only by the accident of a mismatch from benefitting a person the willing donor loves.
Regarding option two, I, frankly, find the scenarios required of families and physicians for controlling cardiac death to harvest organs to be, frankly, ghoulish, and I don't think the Council should endorse this practice.
I also don't think we should oppose its use by those few prospective donors who will not find it distasteful, and I trust the transplant organizations to be sensitive to conflict of interest and other ethical issues and to minimize the very real dehumanization of the dying and mourning process that this option involves.
But these two innovations taken together are little likely to do much to narrow the growing gap between supply and need, and we should not kid ourselves into thinking otherwise. A big difference can only be made with financial incentives, and then only with live donation.
I think there Dan and I are in agreement, and I think these might be simply the facts of the matter.
The second preliminary: The proper assessment of all cash payment options depends on a proper definition and assessment of the present and projected problem that they mean to address, and a full identification and the possible ranking of the competing human goods at stake and appropriate attention to the implications of embarking down this path even a little, and therefore, I want to offer a few words about each of these things and then some comments on the specific proposals.
Definition of the problem. The problem we have today, sad though it is for very many people, should not be called a health care crisis demanding a crisis level response, and I would submit that organ shortage is by far not our worst public health failure.
Paradoxically, I'm strengthened in this opinion by the data indicating that the current shortfall is but a pittance compared to what is coming, with now eight million American with chronic renal disease progress toward the end stages.
Since in the emerging mass geriatric society more and more of us are going to die of organ failure rather than, let's say, from Alzheimer's disease or something like that, should we get a remedy, calling our inability to supply hundreds of thousands of replacement organs a medical crisis can only invite even more bizarre practices in the future, such as massive organ conscription or widespread open markets of vital organs.
To encourage today the belief that we can and should through markets or other financial incentives keep up with the spiraling demands to replace diseased organs is, in fact, to ratchet up the demand for more radical measures and likely to stimulate false hopes and disappointments , notwithstanding the real good that such things might produce to people now on the list.
In this connection, and here I'm going to disagree slightly with Dan, our report, I think, needs to correct the back-of-the-hand treatment that the working paper now gives to the need for improved public health, greater personal responsibility, better diabetes control, even if they don't affect much the fate of people now on the list.
The reliance only on the high tech post hoc heroic medicine is, I think, in the long run the enemy of better national health and the believe that there's always going to be a new organ to replace one's old one is itself a disincentive to practice more responsible health maintenance.
And here it would be interesting to know whether there are suitable incentives that might — I mean, this is crazy, obviously crazy, but what kind of incentives might be provided, indeed, for weight loss, a tax credit? I mean, it's crazy, but we haven't really gone to work on this and to think that we can only sort of come in at the end of the line and pick up the pieces is, I think, to sell short the urgent need to try to do something about the metabolic syndrome.
Next, to the relevant human goods. This working paper which will not be read in the context of the first chapter suitably altered by the conversation of this morning, but at least the working paper as we now have it, a listing on page 2, the relevant goods besides those of expanding the organ supply, omits those that I think most important: the effect of the means chosen on the character of our society, the importance of upholding the dignity of human embodiment, the meaning of giving and self-respect versus selling and possible self-degradation.
Do we want to live in a society in which the human body is regarded as commercial property, in which body parts are bought and sold, in which poor people are tacitly encouraged in their desperation to sell parts of themselves, in which healthy idealistic or more likely entrepreneurial young people walk around tempted to dip into the $50,000 start-up fund banked in their retroperitoneal space or to make use of the $25,000 they might get in hepatic futures, in which we have brokers and middlemen going around drumming up business for their own profit, in which an increasingly aged list of needed recipients or the government on their behalf pays an increasing number of younger people to be their organ farms, thereby making some of them more vulnerable to later organ failure, in which Americans don't travel to Thailand to get their transplant, but in which foreigners can come here and make a very good living given an organ donation visa, and in which everyone is encouraged always to have in the back of their mind how much is my kidney or my liver worth today?
That we can chatter about these matters without embarrassment is, I submit, already a sign of some cultural loss.
Now, assessing the proposals before us I submit requires that we consider not only their effect on the current organ shortage but on their social effect going forward, especially as the need is almost certain to increase faster than any remedy that can supply it.
Coming to the specific proposals, arguments in the name of the competing social goods I have just mentioned are at least in my view decisive for rejecting markets, free or regulated, and for rejecting payment of any sort for live donations, and here I would just say parenthetically if we were to join Dan in the support of a regulated market, I would hope we would not simply accept Dr. Hippen's libertarian regulatory scheme which regulates really only the side issues of safety and openness and ignores the need to protect against other kinds of things, which we could protect if we were going to go that route.
The proposed scheme for futures markets for cadaveric organs avoids some of these dangers connected with cash payments for living donors, but it introduces others. Payment made contingent on the use of organs after death will surely affect many decisions at the end of life as prospective beneficiaries act to realize their net gain at death, and it will surely incentivize certain timings and manners of many in death.
A still more modest proposal to reward post mortem giving, say, by small contributions to funeral expenses can be faulted on several grounds. It does establish the principle of monetary compensation for the organ itself. It will likely do little to increase the supply of usable organs, and the proponents know it.
Indeed, even if a full harvest of every retrievable cadaver kidney will not today — even if we had that, it will not keep up with the ever growing need. Plus when these little modest experiments today fail, it would have prepared the way for the more explicit modification of the body and its parts and what I consider to be unsavory consequences that that would imply.
I don't think we should endorse any half market measures at the moment unless we are prepared now to endorse also the more radical measures that will almost certainly drag in its wake.
Finally, this is just a peroration. It seems to me the task of this council is not just to find innovative solutions to the problem of organ shortage. We're summoned first to assess the human and ethical significance of these proposed new biotechnological developments, and we do have a duty to protect, promote and defend all the human goods that are involved. I don't diminish for a moment the importance of the primary value with which Dan Foster began. I want to underscore that.
The current policy based on giving and proscribing, buying and selling, is ethically sound even if its results are for the time being medically problematic and morally problematic. But we have, to begin with, with some reluctance, overcome our repugnance at the exploitive manipulation of one body to serve the life and health of another.
And even the ancient medical taboo against cutting on a patient not for that patient's benefit. We've managed to justify this present arrangement not only on grounds of utility or freedom, but also especially on the basis of generosity in which the generous deed of the giver is inseparable from the organ given.
To allow the commoditization of these exchanges is to forget altogether the impropriety overcome in rightly allowing donation and transplantation in the first place, it's not only going to turn generosity into trade and gratitude into compensation. It will treat the most delicate and profound aspects of our humanity as if everything of human worth is reducible to its price and to turn the human body and thought and deed into a commodity is, in my view too high a price to pay for saving it.
I'm very mindful of the difficult choice we face, which will appear in the short run to be a Hobson's choice between death and markets. If the Council shares my views, we will be accused of having chosen death.
I think we should rather insist that what we will have chosen is for the long haul both for life and for dignity.
Thank you.
DR. PELLEGRINO: Thank you very much.
We've had two very fine introductions raising some very important questions. Who wishes to open the discussion?
Rebecca.
PROF. DRESSER: I don't dare say anything on the merits, but I'm framing. I wonder if — and Nick Eberstadt and I were talking about this before he left — if this report could be framed in a way similar to the way we handle cloning for research without the vote and beyond therapy where we try to present different sides of the case and make the best argument for that side and presenting an enriched discussion for people to read, take under advisement, and perhaps make their own decisions more thoughtfully, to include this rich material from Leon and from Dan.
Some of the more nuts and bolts proposals we discussed last session could be framed as well. If we continue with the gifting model, here are some possible ways to reduce impediments to organ donation and talk about the policies.
I don't know. It probably wouldn't get us off the hook with Carl, but it might be a way for us to offer a document that would be based on what we can bring to the discussion, not based on a lot of policy empirical work, but some, you know, ethical considerations on both sides, perhaps some things that people at the IOM might not have raised that we have thought about.
DR. PELLEGRINO: Thank you, Rebecca.
DR. KASS: May I speak to that?
DR. PELLEGRINO: A small one?
DR. KASS: I would hope that the strongest possible case that could be made for financial incentives be made in this document, though I myself would be inclined to think that since this topic is all over the place, I think we ought to probably offer in our discussion some sense of the group on this matter, not that those numbers matter.
But I do hope that as we did in the cloning report, the obligation was on all of us to make a stronger case on both sides so that everybody could own the entire document, and I certainly don't dissent from taking Dan's argument and helping to make it as strong as it can be.
DR. PELLEGRINO: Other comments? Peter.
DR. LAWLER: I would agree with what Leon just said. The argument for markets is everywhere today, not on the street so much or in the bars, but it's in sophisticated America, intellectual America, think tank America everywhere today, and not without reason because as Dan showed us in so many ways.
The argument against it is less obvious today. More instinctual, not put so well, as we found out from the people who testified before us, I think, and so we do a great service, I think, by giving the strongest possible argument in both directions, and I actually think our staff is really good, and so is Leon, of course, in giving the argument against it.
So it is up to the others; it is up to everyone whether we actually take a vote and take sides, but in an odd way, when we give both arguments our greatest service is actually to give the strongest argument against it because the people against it, as we saw from the people who testified before us not so long ago, they need help giving arguments.
DR. PELLEGRINO: Schneider, did you?
PROF. SCHNEIDER: Yes. I would like to know more. In the circles in which I am confined to move, I think I know almost no one who represents the view that you're describing, the view in favor of markets.
When I teach my students, I can't get a good discussion going because nobody wants to argue in favor of markets. Could you be more specific about what kinds of groups people do?
DR. LAWLER: Nick is better at this and unfortunately he's not here, and he hangs out with these people a lot more than I do, except to say like the more conservative yet libertarian think tanks like AEI, all of the outstanding intellectuals like Sally Satel [who is] with us today, or if she's still here, are all over this.
You read more and more about it. Newt Gingrich is all for this apparently, and if you look at the way our country is moving, I really do think it's moving in the direction of applying the logic of contract and consent, which has many beneficial results to all areas of life.
So actually when I talk to my students about it, when I go to dinner at Mike's house, I do see that people are pretty well divided on this and just starting to talk about this.
So I would go as far as to say, not to be controversial, the case to me for those opposed to organ markets is dangerously close to the game already being lost oddly enough, right? And I don't have a lot of studies to back me up on this, but I do think, as Leon put it, in this particular issue it does seem like more and more the argument is being made that it's between markets or death, right?
And our friends who are libertarians like the great professor who testified before us loved this issue for that reason because it does show the life enhancing impact markets have.
So I do think the history of America is a more consistent articulation of the individual as individual. As the Supreme Court said in Lawrence v. Texas, what seems like unnecessary, improper limit to our liberty one generation seems oppressive to the next.
So I do think this is the frontier right now.
PROF. SCHNEIDER: Would it be correct to say that this view is concentrated among one kind of conservative then?
DR. LAWLER: No, because, in fact, this libertarian position is neither nor conservative actually, but the tendency of liberals, not all liberals, to speak very generally and vaguely, for liberals, in fact, to be social libertarians, there's a tendency of some conservatives to be social libertarians. This position doesn't really fit into the conventional liberal vs. conservative position actually.
DR. PELLEGRINO: Dr. Meilaender.
PROF. MEILAENDER: I thought I was a cultural pessimist, Peter. You really are.
I was just trying to think about how this would work, and I'm not sure that when I try to conceive it I think of just saying, you know, okay. We should make the best case for a market of some sort and the best against it, though I think the best case for each of those should appear in what we do.
But framing the thought of what we want to do in that way doesn't seem to me to be quite right. I would rather see us start by trying to think through why it is that we've done what we've done, which I think will force us into some of the kinds of considerations that Leon was raising, but will not force us into them simply as an argument against something, but as an attempt to kind of develop an understanding of, you know, what we've taken the important issues to be in organ transplantation.
Some of that will have to do with the consideration that was at the fore in Dan's analysis, namely, trying to save the lives of people who are suffering, and a good bit of it will take up the issues that were in Leon's analysis, namely, sort of a rich understanding of the kinds of beings that we are.
But it would be framed first as an attempt to sort of understand what we've done, the problems that it involves and the dangers, but the kinds of reasons that we've had.
And then in the context of doing that, one can realize it hasn't worked perfectly. There are important challenges to it. There are problems to it, and one can take up then the argument for something that's really drastically different from what we've done, some genuine sort of compensation, and one can set over against that a development of the reasons for worrying about it.
But I wouldn't like to see the thing just framed as sort of case for, case against market. I'd like to see it framed more as an attempt to understand what's going on in transplantation, why we've turned in the directions we have, the deep reasons for that, and then an acknowledgement of the problems, you know, and the insufficiencies of that in order then to think about the proposals for correcting that.
Some of those proposals are more modest ones of the sort we were talking about last time, you know. We don't have to pass on all of those, in fact, to note that there are possibilities, anyway, but they don't have the kind of radical character that the genuine market would be in or the proposal would be a more drastic change and spell out the reasons for that.
But I don't know. I'd just like to frame it a little differently in a way while still not thinking of it as just an argument for one point of view that didn't try to unfold the reasons why one might think that point of view was not fully satisfactory.
DR. PELLEGRINO: Leon.
DR. KASS: Could I try to engage Dan, but not only Dan, in a more formal question rather than a question on the merits?
Leaving aside whether I'm right on the dignity question as such, one of the things I asserted was that one cannot somehow, one ought not to sort of think about ameliorating the shortage and devoting oneself to the saving of lives otherwise prematurely dead unless one really tries to think through the social consequences of going down this route.
You acknowledged, I think everybody is going to acknowledge that there are moral hazards of doing this for the poor. I suspect, by the way, the poor are less likely or that the bigger market here will be the people who are willing to, for $100,000, give their eggs. These are at Stanford and Princeton, where the people know... there are going to be lots of people, I think, that would be tempted if the sum is large.
The question would be something like this. Are we not obliged to try to articulate as clearly as we can the realistic moral hazards before embracing a proposal called "regulated" without at least identifying what are the things that would require regulation and to see whether we have the means to do this?
We face the same problem with the cloning report where the minority was willing to endorse cloning for biomedical research, provided — and it was quite clear on this — if and only if the appropriate regulatory system was in place.
The system isn't in place, but should we not as part of thinking through your proposal, as much as my side had to reckon with the dead people who might die for shortages that might be alleviated, don't we have to somehow identify what are these particular moral hazards and to see whether or which we know some way to address them?
Simply saying that the policy will be transparent and the hospital will say what it wants won't touch a lot of the other worries that we have. Do we want to worry about— can the poor — what income levels are sort of required? All kinds of other kinds of things.
I talk too long because I bury the question. Don't we have to include things of this sort in thinking about whether to endorse this.
DR. FOSTER:I mean, the picture you drew that was an inevitable consequence of doing this in terms of bringing people in from Thailand to give their things with visas, I mean, I don't think it's realistic to think that our government is going to give visas for people to come here and all of these awful things that would happen.
In terms of just, I mean, the things that you worry most about are things that I think highly unlikely to happen because this is a pretty smart country. It usually does things. You know, if it's slavery, it usually gets rid of it.
I mean, you know, we do a lot of dumb things, but overall on most things we do pretty well. There are some things that we've already said we don't have insurance and so forth.
So to me to pay somebody for a kidney and to take out a kidney here is demoralizing and undignified. It's not as strong to me as it is to you, and I certainly respect yours and I think many of the people here have that feeling.
My own view is what's really undignified is to let people die that you can save. I think that's humanly undignified to do that, but I understand the risk.
We had the same sort of fears. You know, if you go back through science we had the same sort of fears about vaccinations. We had it about in vitro fertilization. I mean all of these specters were brought up, and so if anybody except you had said this, I probably would not pay much attention to it. But since I've learned so much from you, including the beginning of wisdom in your book on Genesis, and I know you think I'm only beginning to get wise about this thing —
(Laughter.)
DR. FOSTER:— but I don't have the same thing.
The other thing that I should say — and, by the way, in terms of preventive medicine, I'm not against that. I'm just saying that the techniques that we have done work because we now know — Bill and I were talking about this last night — that the eating thing, there are two problems with that; that once you lose a little weight, then the body begins to release all of these eating peptides that force you to eat, and then your mitochondria get more efficient than they were before, which you want it to become less efficient. So there are biological reasons that it doesn't do [what you want it to do].
And then, secondly, eating is wired to the hedonic pathways. I think I talked about the hedonic pathways in one of the other meetings. These are the pathways of addiction, of pleasure, and so there is a pleasure. They go through the endocannabinoid system, which is what marijuana binds to, except you have endogenous agonists in here.
So I'm not against this, but what I'm saying is that I think for the obesity syndrome we've got to get a drug that will block those pathways or to do something. By willpower you can't do it. I mean, it's overwhelming that you can't do it.
It's not your question, but I just wanted to make clear about that.
The second thing I want to say is and I was very impressed this morning when you made the point that probably with an increasing number of demands, that we could make a temporary thing.
But Nick said something that was very important, except his timing was off. He said 15 years from now this conversation will look very quaint. In modern science five years from now what we do in science looks quaint. In fact, oftentimes, it's in one year things look quaint as we are learning about all sorts of things that change almost monthly.
So I think there will be things — so far the xenotransplantation has been disastrous, even with attempts to — I don't want to get too technical here. You know, there's a cell in the testis called the leydig cell. It makes testosterone and so forth. It also has the capacity to turn down the immune system.
And so people who are working on, let's say, giving islets to treat diabetes coupled with the leydig cells to see if they could turn down the rejection that would be going on, I mean, there are all sorts of new things going on. I can't tell you about this because it's too hot and too early, but there may be a way to cure both Type 1 diabetes and Type 2 diabetes. It's not even published yet, and it's not my work. So I can't tell you, but things are going to change.
So it might be less of a worry to say that if we could increase the organs for a short time, save some lives here, and then get rid of it if we have got new ways to treat this.
I have high confidence in science. How long it's going to take, I mean, I don't know. So I guess the answer I'm sort of saying is that I don't see the same moral dangers that you do, but I would be worried if the picture you paint is the one that's really going to happen. Then I would really worry about it, and since anything is possible, then I think we have to think seriously about it.
That's not a very good answer. I sound like I'm punting, but I'm handicapped by the fact that I do not have the same sense about gift — I've already said this — about gifting and moral things that a number of our colleagues here do.
DR. PELLEGRINO: Alfonso.
DR. GÓMEZ-LOBO: As I was hearing all of the interventions, I was trying to be clear in my mind of what exactly is the shape of the moral argument in this discussion because, on the one hand, it seems to be primarily a question of freedom or a question of perhaps libertarianism, but I'm not sure that's the right approach.
Why not? Because it seemed to me that what Dan presented was the overwhelming social good that would be obtained, and then that was used to justify the market, to justify the means.
So I inevitably tend to see this as a classical utilitarian argument. Now, what does this mean?
Not necessarily that there should be arguments like that should be condemned outright. There is certainly validity in utilitarian considerations in public policy. I wouldn't doubt that for a second.
But the question then would be how can we deal with the means if we have reason to question the ends and if there are problems with the goods in the means themselves.
What I'm trying to suggest is this. I'm very impressed by the argument that the gap literally cannot be closed any time soon, if, indeed, we are aging and if organ failure is going to catch up with us or the majority of us very soon, then it seems to me that it is plausible to say, well, we're never going to have a supply to meet the demand simply because the demand is going to be growing exponentially.
And that seems to me a very important consideration because if there's a certain good to be attained, then, of course, that may be a very powerful reason to add to the consideration of the means.
But if we know right from the start that this is not going to be attained, then we have one more reason to ask, well, should we embark on this experiment in the knowledge that it's never going to solve the problem? That would be my very first consideration.
Then with regard to the means themselves and the argument I was making this morning was an argument from dignity, let me just say this very briefly. I don't see why letting someone die of a natural disease after providing all of the reasonable care might be a violation of the dignity of the person. I just don't see that.
I think that there are many instances where the reasonable thing to do is to let someone die, and of course, if there's an overwhelming majority of people with organ failure, I don't think that there is necessarily a violation of their dignity. They're not being used as an instrument, as means to anything else.
Whereas it seems to me that the market in body parts may well be conceptualized as using people as means because they are using in a way themselves even when they choose freely. They're deciding for the sake not just of providing the good for the other person, but providing a monetary gain, and that seems to me to be more clearly the case of a self-violation of dignity.
DR. PELLEGRINO: Dr. Hurlbut.
DR. HURLBUT: I just want to clarify something, to back up. You made the statement that willpower isn't the answer. I mean, you can see that that's very hard for people to control. Most people, for example, who are obese know they shouldn't be eating, but they do. People who smoke know they shouldn't smoke.
But that's after the fact that the disorder has set in. Are you equally pessimistic about the incidence of these disorders if we did preventing things earlier? I mean, is it just as simple as the refrigerator is the enemy of modern man and there's just no solution?
DR. FOSTER:Well, this is not something that's a guess or anything. Most people who start to gain weight begin to worry about it, you know, when they are ten pounds overweight, and their belt doesn't stop, and their doctors tell them, you know, you need to exercise, and so we start early.
And part of it is physiological. I just saw a child this week with what's called a Prader-Willi Syndrome, and these are little babies who are born. They characteristically have tiny feet and hands. They tend to have a low intellectual thing except in one thing. They're geniuses about doing jigsaw puzzles. It's the most amazing thing. It's on the Chromosome 15. They are hypogonad. They don't develop sexually and so on, and we now know what the gene defect is, and what it is is that they have high levels of an eating peptide in the gut, which is called ghrelin, and these kids become monstrously — we're working on this little kid who is just a few months old, whose mother is — he's a young, African American kid — his mother says she can hardly now pull him away from the refrigerator. He's not obese yet, not fully obese yet, but he's being driven by this eating peptide that will cause him to become monstrous, and nothing so far that we can do has any [effect].
So most people worry about being overweight from a very early time. You can tell somebody who has got diabetes and say, "Mr. So-and-so, I can cure you right now if you'll lose 50 pounds, but you may go blind or you're going to be out of your kidney," and so forth and so on. If I were you I would wire my mouth shut until I lost this weight because I'd cure my disease."
It's the same thing we were talking about last night. I mean there's some coupling, whether it's smoking or drugs; they're coupled to these pleasure pathways in the brain, these hedonic pathways, which as I say enter through the CB1 receptor. That's a marijuana receptor, but it has got agonists in it, and it hooks up to the heroin receptors, to the micro-opiate receptors, and that's where the pleasure comes. It's pretty hard. It's just like getting someone to stop cocaine or whatever, you know, the pleasure is so great that you can't.
It's an exaggeration for obesity, but I mean, that's where we — there has not been a single study that I know of other than bariatric surgery in which there's a significant loss of weight for a long term in people who have these diseases, and if they lose the weight, their high blood pressure goes away. Their metabolic syndrome goes away. The fat in the liver that's going to lead them to cirrhosis and cancer of the liver is going to go away.
That's been done, and the studies about weight loss, they're 30 or 40 years old, and every single one of them shows exactly the same thing. So that's the point I'm making.
That's not speculation. That's just fact.
DR. HURLBUT: But, Dan, there's that family study of the Indian on one side of Mexico and the other in New Mexico or wherever it is where one group gets diabetes and the other doesn't. You know what I'm talking about.
DR. FOSTER:There are people in India who get Type 2 diabetes who are never fat. Okay? We know that. If you take the aboriginals or the aboriginal equivalents in New Zealand and you take them out of the city where life — sometimes with Native Americans the same. They go to the city. They become obese. There's a high incidence of alcoholism. The blood pressure is up.
And then you take the aboriginals and put them out into their country and have them go back to a hunter-gatherer situation where they do not have the food available and so forth. Then they reverse all of these things, but because they're running and exercising, and catching all of these things.
But everything has got genetic backgrounds for this. I mean, in fact, I'm a co-author of a paper that has just marked a new instant of why you get instant resistance in these oriental Indians that have Type 2 diabetes, you know. So it's genetic.
DR. HURLBUT: Well, I just want to make one more comment on this. I largely agree with your analysis, and this may be a little deflected, but I think there's a serious issue here that we've got focused on the organ transplant issue, but if you think of this as one instance where modern civilization is provoking a medical problem and you broaden that to social problems and a variety of things, I think there's an important issue in bioethics emerging with regard to these hedonic impulses, and the vulnerability of a society that can supply very rapid response to low grade desires.
I mean, you broaden this out from food to gambling, stimulation, and pornographic kind of stimulation on the Internet, and a wide range of issues, and it seems to me eventually we're going to get to the point where we can stir these up biochemically, and it looks from the scenario you painted as though we're going to need a lot of pills every morning to keep us from ourselves if this keeps going. Is this —
DR. FOSTER:Well, a single pill, I didn't mean to give a medical lecture here. So I'm only going to enter one other medical question about this, but, yeah, I mean, what we do now in Africa with the AIDS is we give three anti-AIDS pills as a single pill. Okay?
And, by the way, Africa is just as fat and metabolic when they're not in the starvation areas, you know, as they are in France and Paris and everywhere else, but the U.K. now has a six container pill so that it treats cholesterol and high blood pressure and, you know, about six [in a] single pill. A pill like that will be released in the United States, I think, before too long.
So, yeah, the average person who gets up to I'm thinking nine or ten medicines because he usually takes four medicines to control the blood sugar nowadays, you know. So it costs, and if you really want to treat congestive heart failure, it takes seven or nine drugs if you want to do it in a way to cut the mortality from it.
I'm sorry about the medical stuff.
DR. PELLEGRINO: Peter.
DR. LAWLER: Well, I enjoy learning about the medical stuff, and I start to get paranoid I have all of this medical stuff.
(Laughter.)
DR. FOSTER:Peter, I'm not too expensive if you want to come.
(Laughter.)
DR. LAWLER: Marketizing, all right. All right. You'll be seeing me soon enough I'm sure.
But you have reminded us, Dan, that this really is a dilemma specific to a certain stage and the progress of medicine, and the good news is we have ways of treating kidney failure. The two ways are dialysis and transplants.
Dialysis has frozen into place. It's not getting any better or barely, whereas the transplantation is getting much more effective. It's getting better all the time.
So you're not so worried because you think, well, we'll make this compromise concerning markets and selling body parts and all of that and don't worry about the modification and all of that because once science solves this problem either through curing the relevant diseases like diabetes 1 and 2 or through the regenerative medicine or something I wouldn't even begin to understand, but there are always many possibilities on the horizon and we will soon enter a new stage of medical progress where the kidney transplantation was unbelievably barbaric and gross.
That doesn't mean I'm against it now, but soon enough that would be the case. This thing kind of cuts both ways. On the one hand you might say, well, let's go ahead and make this compromise, and tell Leon not worry very much because we won't need to make the compromise very long, and think about all of the lives we'll save.
We may not save every life. The demand will exceed the supply, but we'll save lots of lives. On the other hand, you can cut it the other way.
Let's not make this compromise because the benefit will only be temporary, and we'll set a principle that will be very hard to go back on actually, and this reminds me in the way of dilemmas around stem cells. It's also a dilemma, the specific stage of scientific development.
And given the science is going to surpass this soon anyway, and given that lots of people are going to die that might not die or die more prematurely than they would die otherwise, still it troubles me that we would make a compromise. It's a lot more than a compromise, but a new stage in our self-understanding because I do think an organ market is a new stage in our self-understanding.
We would do something that might be very hard to go back on once we establish the principle. Given the benefit from this, it is going to be relatively temporary. So it's not going to last that long kind of cuts both ways.
DR. FOSTER:I just have to clarify one thing. our Council has always warned about hype, and I don't want to sound like I'm saying — I don't think this is a temporary, very fast thing that's going to happen. I don't know when that's going to happen. I think ultimately it may happen.
We've been fighting cancer for a long, long, long, long time and haven't solved that. So please don't make me sound like that I think that in the immediate future that we're going to solve these problems. It's going to be a long time.
But it will, I think, in the end be temporary, but it depends, you know. A thousand years is a day and a day is a thousand years is an old biblical statement.
DR. LAWLER: Then what Nick said earlier was misleading in the case of kidneys because technology is not going to progress that fast. I don't think this kidney rental thing is going to catch on.
And, on the other hand, he made it seem — and markets, too — he made it seem like these things are inevitable. Our conversation here would be quaint because it would be surpassed both by technology and the logic of the market as if we were not free to control the logic of the market if that's what we think best to do.
So I'm not sure if they know. The point I was trying to make from another point of view is it's hard to tell how quaint our conversation on this particular issue will be in 15 years. It could very readily be the case as Dan just said. The kidney situation won't be very much different in 15 years. It will be different eventually. Everything is different eventually, but we do have to consider making fundamental alterations in principle in terms of dilemmas that are very specific to a certain stage in medical progress, but we do have to consider, as Dan says, how long the stage of medical progress is likely to last.
And I will concede this kidney thing is temporary, but it ain't that temporary.
DR. PELLEGRINO: Rebecca.
PROF. DRESSER: The one thing that is the case against a market needs to address, I think, is the black market in organs. I mean we already have people from this country who fly to other countries to get organs that are paid for, and probably there may be some of that going on here that we just don't know about.
I'm not one who says the fact that something is going on under the table means we have to legalize it and regulate it, but I think we have to acknowledge it and say something about it if we don't want to seem hypocritical.
I'm not sure what to say about it, but I think we need to acknowledge it.
DR. PELLEGRINO: Robby.
PROF. GEORGE:Thanks, Ed.
Leon, I have a couple of questions I'd like to ask you. I'm worried about all of the moral hazards that you're worried about, but I'm also worried about one that I think you said you're not worried about, and so if you could erase my worry, it would be a kindness to me because I've got enough to worry about.
And if I understood you correctly, you said you're not so much worried about the exploitation of the poor in a marketized system because the people who would tend to be the sellers of organs would likely not be poor people, but rather the kinds of people who now donate eggs, the Stanford and Princeton students.
And I'm dubious about that, in part, because of the difference between gametes and the kinds of organs that would be talking about here, kidneys and so forth, parts of livers, and in part because those who attempt to induce young women at Princeton and Sanford to sell their eggs appeal not only to their desire to get a large lump sum of money, but also in an odd way to their vanity.
If you lay before a Princeton student — I won't speak for Stanford here, Bill — but I can tell you if you lay before a Princeton student the proposition that you're allowed to do something if you have SAT scores of 1400 or above, they will think that is a good thing to do. So I can establish that I'm the kind of person who's worthy of this.
So there's an appeal to vanity as well as to a desire for the money. And of course, the eggs that people so often want at least for reproductive purposes, the situation will be different, and I will worry about exploitation or if eggs for cloning becomes the issue, but when it's eggs for reproductive purposes, of course, there is this special desire people seem to have for eggs from, you know, blond women five eight and above with 1400 SAT scores.
I don't think those considerations would bear so much, if at all, if it came to kidneys and things like that. So I do worry about poor people to poor people being especially vulnerable to financial inducements to do what they would otherwise not do.
And I have a special concern that I would particularly like to have alleviated about the possible exploitation of women, especially poor women, but not exclusively poor women, even though we're not talking here about female gametes.
We know that there is a terrible black market in the United States, and that's a black market in women. The trafficking of women into sexual slavery is a very dirty little secret in our society. Now, of course, it has at least been acknowledged now with the creation of an office in the Justice Department at the federal level to try to combat it. The people who work in that office know how very, very difficult it is, and they also know how large the problem is.
If there were a lot of money on offer for organs, I wonder if women like those who are subject to that exploitation, and it's by men, of course, would find themselves pressured to make the sale.
So I fear that it won't be Princeton students, but rather poor people who will be exploited. So, Leon, that's my first question, and then I have another one.
DR. KASS: Yeah, I probably ad-libbed some qualifications in that sentence. When this subject is discussed, everybody thinks about the, quote, unquote, exploitation of the poor, people who are in desperate straits for whom — and, by the way, let's not be too pious about this. These are people who have children and put the best construction on it. If this is the only way that some people have of making that which is required to shoulder their responsibilities, one could sympathize to some extent with their motive and not simply write them off.
I think that's an issue that's widely recognized, but I think that if we simply open this up and said there are no restraints with respect to the buying and selling of organs, in fact, we want healthy organs. We want organs from the young. We need to be as much concerned about possible exuberance and foolhardiness of the young idealist as well as the young entrepreneurs who are running $50,000 of debt for their education or who want to start a business.
And if the data come in, and I'm doubtful about it, if the data come in after really a long haul, you know, 99 percent chance that you're as well off with one kidney as two, and we provide all of these kinds of compensations for the donors. I think it's not just — the pool for live donation is not just from loved ones and families and not just from the poor who are desperate, but from lots of people who seem to quickly make $75,000.
If there were no regulation about who can enter, if the price were sufficiently high, and if you do have an open market, and if you do have brokers going out there and advertising and drumming up business, it doesn't take a lot. It doesn't take a lot.
So I didn't want to say that the other isn't an issue. It's a very serious issue, and the desperate sale is always a moral problem, but I didn't want us to simply walk away from thinking that's the only place where it is.
PROF. GEORGE:And I appreciate that, and I'm not only concerned with the desperate sale, but there can be poor people who are not desperate people who are induced to sell as well.
Before returning to Leon with my second question, Dan, could I just solicit your comment on that particular problem? Would it be acceptable as a form of regulation to try to do something that would eliminate being poor as a reason why people would sell or would that defeat the purpose of the market?
DR. FOSTER:Well, I don't know. You know, I'm not a philosopher. I think you'd run into a problem if you put some barrier. Let's say that you had to make $40,000 a year before you get paid for a kidney because it would look like discrimination, I think, against the poor.
So I'm not sure, Robby, that you could do that. I mean, I understand. One of the things that I worry about is inducement of people, you know, to give in a way where they might not be as healthy or something else going on.
PROF. GEORGE:If you weren't worried about it looking like discrimination, if that problem of appearances could be made to go away, just as a policy would it be a right and just policy and would it be a better policy to sort of do a reverse means testing where you do have to have a certain level of income before you would be eligible to be paid for an organ?
DR. FOSTER:Well, I think what that would do, and I'm just talking off the top of my head, I think that would relieve, you know, somebody who is economically able to buy food and so forth and so on to do that and then it would be a more rational decision for them to sell than it might be in the desperation of the poor.
I think that's what you're probably driving at, and I think that probably would work, but I just don't know how to do that without avoiding. I think it would probably be an overwhelming sense of unfairness if that were done.
But I think a lot of people intuitively are worried about the fact that if it's a danger to do this and so forth, then there's more risk. You know, if everything is perfectly safe, then that sort of fear about the poor moves away.
But look. The poor die early. I mean no matter. They just do, and by years earlier. There's something about poverty that you die earlier. I mean all of the statistics show that. There are partly racial components to that, but just poverty itself shortens life.
PROF. MEILAENDER: Robby, could I just intervene for one second?
PROF. GEORGE:Yes.
PROF. MEILAENDER: To say, I mean, we could solve your problem about exploitation. We could just use conscription. That would deal with the worry.
PROF. GEORGE:That's true.
DR. HURLBUT: I have a better suggestion. You could offer admission to medical school for any student who is going to give.
(Laughter.)
PROF. GEORGE:I stress that Gil and I are not supporting the idea of conscription, but the logic of what Gil suggests is right.
I've taken more than my time, Ed. So I'll ask Leon my other question privately.
DR. PELLEGRINO: Peter.
DR. LAWLER: Something really bothers me. How would you keep people from regarding your kidney as part of your net worth? So could you borrow against your kidney? Would you kidney be part of welfare means testing?
Wouldn't we have to take very — and credit agencies might think about a kidney. Bankruptcy procedures might take your kidney into account.
So there would have to be very stringent measures taken to make the kidney not part of your net worth so that you wouldn't be discriminated against as a poor person or as a borrowing person because you had two kidneys.
So for example, my college, assuming the parents are relatively young, which they all seem to be all of a sudden, we say, "Well, here's your financial aid package, but we need to know first whether you have one or two healthy kidneys. If you can prove to us you have only one kidney or your kidneys aren't acceptable, then we'll give your kid this much money, but if you have two healthy kidneys that can be donated we'll give your kid a lot less because why shouldn't you use the kidney to further your kid's higher education?"
So, I mean, this is serious and not serious at the same time. How would we keep people from thinking that way?
What are my assets? Well, I have a car, I have some land, I have a certain amount of money in the bank, and I have a kidney ready for donation. How are we going to avoid that?
DR. GÓMEZ-LOBO: For sale, not donation.
DR. LAWLER: For sale, right; for sale or donation in quotes. Donation, donation with benefits or something.
DR. PELLEGRINO: Schneider.
PROF. SCHNEIDER: Well, that seems to me to be exactly the kind of problem that legislation actually can deal with. It can say to bankruptcy courts you may not take this into account and to all of the other possible creditors you may not take it into account. So if it's just a question of these kinds of legal financial proceedings, that strikes me as the easy part.
DR. LAWLER: Yeah, if the law can take care of the psychological dimension of it, too, but that seems to be an area where you'd have to have heavy — I'm not disagreeing with you, but at the very least, you'd have to have very heavy and specific regulation.
PROF. SCHNEIDER: But not unusual.
DR. PELLEGRINO: Other comments? A topic that has been hotly discussed in the past.
DR. LAWLER: I don't know why people think kidneys would go for $75,000 either. I haven't done any study on this, but it seems to me that our assumption of the high price depends upon Medicare, the Medicare dialysis entitlement.
So it would be worth it to the government to buy kidneys for $75,000, even $100,000 to get people off of dialysis and save the taxpayers money.
But in the absence of Medicare, you know, and Nick might be right. We don't want our discussion to look quaint. It could be Medicare is not going to be there forever. It may be ruined by demographic realities.
In the absence of Medicare and in the presence of globalization, I think kidneys would go at a much lower price than that actually, that there is already a global market in kidneys, even regulated to avoid obvious obesity.
So why $75,000?
DR. KASS: Dan gave us one number, didn't you?
DR. PELLEGRINO: Leon.
DR. KASS: I'm sorry.
You estimated some number for kidney in your remarks, and there is — "data" I think is too strong — but we have reports from what is paid in other parts of the world where it's a gray market. It's not exactly a black market. Lots of people know what's going on.
And it depends in part if you need to have a real market. The price would be set by the relation of the supply to the demand, but —
DR. FOSTER:The Brazil price, I guess, for kidneys is $1,000, you know, but I think $75,000 or $50,000 is way too high. I think the figure that I once used just as a hypothetical figure was $25K, but that would be in the context then of maybe a third or a quarter of what the whole procedure costs to do it.
You remember we had that paper from California where the UNOS had made hundreds of thousands of dollars profit, you know, in I think it was a two-year period on this. I mean, they're the nonprofit organization that is supposed to do this.
The money in this, and so probably if you were going to make some standard about what it would be, it would be considerably lower than $75.
I do want to say one last word about going to Thailand and things like that and the question of whether there is — there is suspicion that there is a black market going on even in the United States. I mean, how can you get a liver automatically in Jacksonville, Florida, I mean, you know, in a year. It doesn't matter, you know, if you're Mickey Mantle or whoever. You can be a famous person and get it there.
But I oftentimes ask myself, and I did this before I came to this conclusion. This is a new conclusion to me that I came to today. I had not thought that I was going to come to that, but if my son or my wife had renal failure, I would do whatever was necessary to get a kidney fast, and if there wasn't somebody in the family that could donate it, if I couldn't donate it or whatever, then I myself would go overseas to get it because it's one thing to say death is normal and it should come, but if it's somebody that you love for all your life and so forth, then that cancels pretty quickly the idea about what's so bad about dying.
I mean if it's premature. I'm not talking about a 90 year old or 105 years old or something, but if it's premature. That's what I would do.
And one of the things patients always ask me is what would you do if this was your wife, or what would you do, and I'm just telling you what I would do. I mean, it's very casual to say, well, death is death, but not for the people who are facing it and going through it, you know. It's not.
So I think we'll see increasingly going overseas for these organs, which I would hate to do, but some of the hospitals in the Orient are very good. There are American trained doctors there and so forth and so on. I would do that.
And that's part of the thing because I haven't had to face this, but what I'm saying is that if I had to face it, I'd want a kidney, you know, if it's for 30, 40 or 50 years. Anyway.
DR. PELLEGRINO: Rebecca and Bill.
PROF. DRESSER: I totally understand that, and I'm sure I would feel the same way, but I don't think our intuitions about personal situations are always the best basis for public policy. I think they should be taken into account.
DR. FOSTER:I wasn't arguing that. I was just making a personal confession.
PROF. DRESSER: No, I know.
DR. FOSTER:It didn't have anything to do with policy. It was just a personal confession.
PROF. DRESSER: The other thing is, I think, how would you feel if your young son sold his kidney. I think if we're going to put it in personal terms, let's think about that, too.
DR. FOSTER:Well, we're not going to get into child raising. I think I might advise against or I might say that's your decision. It's not for me to make. It depends on who he was going to give it to. If he couldn't get it any other way for — you know, couldn't give it to a friend, but I don't know the answer to that question
DR. PELLEGRINO: Bill.
DR. HURLBUT: Dan, would you do that even with an intuition or good evidence that there was some measure of exploitation or even criminality behind the procurement of the organ that would go into your body?
DR. FOSTER:I would not do it if it was criminal.
DR. HURLBUT: What about if it was like, you know, those stories in India that women, the wives are kind of coerced to go and sell their kidneys for the sake of the family?
DR. FOSTER:Well, again, we've brought that up. Some people believe that a market system instead of exploiting the poor would give them resources that they might never ever have under any other circumstances. Do I think that if you're in the poorest part of India — I mean, you know, the economy is booming over there now — but if you're in the poorest part and somebody could now get a light bulb in their house because they sold a kidney and they thought that was what they were going to do for their family, then I would not object to that at all.
DR. HURLBUT: Well, I feel the power of that statement, but you know, I remember the first day of our Council when we met with the President, and one thing stood out strongly in my mind since then, is that he said to us what we decide on some of these bioethical issues will set the standard for principles in the world or have some strong influence in decisions of other countries.
If we were to approve a kind of market organs here, then it's an implicit approval of it elsewhere, obviously, and the conditions in which organs would be procured in other countries could not be regulated like they could here.
That's just a practical argument, but the argument has some weight in my mind. I'm personally strongly against the idea of having a market in organs, I think, for the reasons listed, and I can think of others, too.
As I said earlier, I think we ought to be quite careful in this whole realm of transplantation because I think we should also not get to the point where there's even kind of moral pressure on people to donate. I think this should be a very special realm of existence, one that takes account of the very serious good that can be done with it, but also one that doesn't tap in even on idealisms, but very realistic perspective that's both pragmatic and freed of all sorts of pressures because the implications of this are just huge.
DR. FOSTER:Well, Leon was brutally honest about this. I mean, there are people dying because of this now. That's what the fact is. I mean, I don't care about other moral things about it. I mean, let's just talk about that.
You want to vote. You have every right because if you think — and I won't fuss. I mean, I'm not going to fuss about that, but the fact is that that's the issue which is realistic.
I mean, what you're talking about is death for some people and non-death, and that's all. I mean, look. I don't think anybody else around this table feels the way I do for a market system. It sounds like to me everybody else is against this. So I don't think that's going to happen anyway.
That doesn't take away the problem that there are people dying and the only way you can do something about it is this. If you think that you're going to give a life insurance policy or you're going to give them $300 for a burial and so forth for cadavers, that that's going to change anything, then you've got a lot more faith in things than I do.
DR. HURLBUT: The argument for suffering is a bottomless argument. I mean, there's no solution to suffering in that ultimate sense.
DR. FOSTER:I don't want to get into any more detail. I mean, I'm not arguing individually about this, and I've done way too much talking, as Robby said. So maybe we ought to adjourn.
DR. PELLEGRINO: Leon.
DR. KASS: Well, I do want to say, and here it does seem to me — and I've said this now probably two or three times over the course of our discussions of this — I don't think we can run away from this particular fact the way Dan has forcefully stated. If, in fact, — and this is the reason that this has heated up and why there is pressure to change the law, and that's where the libertarian argument comes in, where the question is why should the law prohibit certain sorts of things which people might freely do. All you would have to do would be you don't have to endorse it. You just simply have to get out of the way of the practice. That was Dan's way of making the argument.
I think we have to say in the strongest possible terms that we understand what decision at this time against markets might, would very likely mean, and I think at least to express some skepticism about the degree to which all of these other measures are going to make a huge dent in the shortfall, especially as the demand continues to go up. I think that should be stated.
Now, the difficulty, Dan, and premature death is a terrible thing. There's no issue between us. The question is whether once that's stated, the conversation ends.
From a medical point of view and from the point of view of the sufferers and their family, that surely is a prima facie claim to being the first and last thing to be said on the subject, and everybody else has the burden of proof of showing why we shouldn't do what we can here.
The question is whether from the society's perspective as a whole that particular perspective is the king of the hill and has to be displaced by powerful enough arguments.
In the Council's discussion to this point, and this may be wrong, but it's reflected in a way in which some of the staff papers are, in fact, written. The argument about saving life and the argument about freedom of contract and things of that sort have been given somehow the primary place, and then in the end, the strongest argument against this might be some people believe that the body shouldn't be commodified. That's not quite verbatim, but that's the way it shows up in this particular working paper.
I do think that however this gets written up, the point you make has to be strongly emphasized and not ducked, but I'm not sure that from the society's total point of view on this subject that is simply the point of departure in this area.
This business about — and allow me, Mr. Chairman, just a little longer — it might be that things that are said here will, read 15 or 20 years from now, look quaint for a number of reasons. Either the problem went away and we seem to be silly to have wasted so much timeon it, which I doubt, or we will have reached a higher plane of morality, and the worries of the dinosaurs will have disappeared because the dinosaurs will have disappeared, and the mammals in their hairiness will rule the earth. That's very likely.
But the things that we're arguing about here are not negligible. There should at least be a record of the best thinking that we can muster after exploring these things, and you know, if the Titanic is to go down, it's good that there should be a song.
And if you think about the evolution in this area, first you have the wonder of organ transplantation. Then you've got to overturn this common law view about the uses of the dead body.
So you have the Uniform Anatomical Gift Act devised to facilitate transplantation and overturn the common law's understanding of the mortal remains, there being a kind of quasi property rights for the sole purpose of burial.
Then you have smart people saying, "Look. We've got to do something about the definition of death. Otherwise organs are going to be wasted."
Then you have the National Organ Transplant Act to produce a kind of national network, nationalizing this problem as an urgent public health matter.
Then the thing becomes quite successful. So you have a very large list of people who are waiting, and it now seems morally reprehensible to stand on any ground that would get in the way of getting them off the list.
This is not a sort of slippery slope. This is the development of a kind of way of thinking about this, and this conversation might look quaint— because we'll wind up someplace down the road where people will have forgotten what the issues are here and what the things are that might be being trampled.
This is, I think, the great virtue of the way in which Gil began this morning, and the way he intervened earlier here to say let's put this in a narrative of how we got here so that we can see. Even if we were to embrace a market, that we somehow see that there are other things that are vital to defend, and leaving aside whether there is the dignity and embodiment or not, there are social consequences of open buying and selling in this country, never mind what the international implications are for a kind of trade.
That's why I don't think one can simply take the brute fact on which we agree and from which I certainly don't want to hide and allow it to be simply a moral trump here. It stands very high, but I think one has to tell the richer and fuller story so that there will at least be a record that once upon a time people saw that there were large human questions here which at least some people worried about and maybe you could recover.
I suspect the markets are coming, whatever we think. Maybe not this year, and I don't think there's national sentiment for it yet, although the home team in my think tank is all for markets. I'm the token opponent.
But, well, I have just talked too long, too. Forgive me.
DR. PELLEGRINO: Do you care to respond, Dan?
DR. FOSTER:No. I appreciate it. One of the reasons I respect and love Leon is that he's not afraid to back away — I mean he doesn't back away from the truth of his statements, and I think it's very wise, and it gives confidence in the assessment even if one disagrees with it.
DR. PELLEGRINO: If I understood you correctly, Leon, you were describing what I think is a fact. It's a slippery slope which a lot of people will reject, but whenever one brings that up, the word "regulation" comes up, that somehow we can breach a moral chasm by saying we can regulate it.
I want to raise a question of how successful has regulation really been in keeping people from going down the slope from A to B to C to D, not only in the one you describe, but the many others we have been subjected to in the contemporary society.
There's a kind of ideological blind faith in regulation as somehow an ipso facto argument that will enable us to put sand on the slippery slope, and that worries me as much as anything else.
And without getting into the discussion, I certainly would find the whole idea reprehensible, Dan. I understand the very good reasons that you put forward, and I can understand the personal response, but I think it would devalue our society even further than it has devaluated itself up to this point.
Any other questions or comments?
(No response.)
DR. PELLEGRINO: Thank you all very much. We have an early recession.
(Whereupon, at 5:21 p.m., the meeting was concluded.)
