PCBE: Transcripts (February 15, 2007): Full Transcript

Welcome to the twenty-eighth meeting of the President's Council on Bioethics. My first task always is to recognize our Designated Federal Official, Dan Davis, Executive Director of the Council, and his presence gives our meeting a governmental sanction, which we need.

As you can see, we have a very, very full agenda this time and much to accomplish. We hope, our hope is to bring to conclusion, if possible, and some sense of closure of our inquiry into the organ transplantation issue we've been looking at over the past several months. We need to come to some degree of closure on the range of policy questions and a number of other issues.

Now with the aid of setting the stage for today's session, the staff has prepared a series of papers, four papers, one for each of today's major sessions. These papers were intentionally brief and succinct, designed to advance our discussion without leaving anything of what we had discussed previously behind or excluded, but trying to bring us in focus for each of those papers.

The first paper does not do justice, nor was it intended to do so, to all the ways we have touched on the meaning of the body which is so fundamental in our consideration of something like organ transplantation where we interfere with the integrity of the body for reasons which some feel are quite debatable and others are justifiable. But all the papers are intended to get a discussion going and bringing discussion to each of those papers to some sense of closure. I keep using that word closure because we have been at this topic for a long time.

We're going to begin with a discussion of the body. There are no policy questions that are in play here, but it's important that we begin with a philosophical exchange on the meanings of the body. This has not often been addressed by people who have prepared reports on organ transplantation. And so it provides us a philosophical foundation for some of the ethical issues and pronouncements we might make.

We're then going to move on to allocation of organs, a very important practical consideration. We've had discussions about allocation in this group before, but we need to be a little more focused today and we will do so with respect to three questions that we'd like to look at particularly: the role that geography should play; age is a second issue; and then the question of calculations of net benefit in allocation.

Our third session is going to focus on proposals spawned by the aim of caring for the living donor and for the transplant recipients, the participants in the activity itself.

And on the fourth and final session, we'll focus on the shortage of organs and on three policy issues. On the ethics of pair donation and list donation, donation after controlled cardiac death and organ sales, a topic which engaged us toward the ending of our last meeting.

My hope is that in these sessions we will proceed to some sort of — and come to closure, be responsive to the concerns raised at the last meeting by the Council, and especially the need for a focused debate on some of the more contemporary ethical and policy questions of these ethical issues in contemporary medicine.

SESSION 1: ON THE BODY AND TRANSPLANTATION: PHILOSOPHICAL AND LEGAL CONTEXT

We will begin this first session this morning on the body and transplantation, a philosophical and legal context. We have asked two members of the Council who graciously agreed to open the discussion and therefore will be the focus and to carry out that theme we want to play throughout this session, focusing on where we are at the present moment and on the possibilities of closure.

The first discussion will be Dr. Meilaender and the second will be Dr. Alfonso Gómez-Lobo.

Dr. Meilaender?

PROF. MEILAENDER: Thank you. The staff paper that we have for this session quotes some comments that Jim Childress made to the Council when he was here once and they make a point that it seemed to me is useful to start my comment. He was here, you remember, to discuss the Institute of Medicine report, what it had done and what it had not tried even to do and that report dealt mainly with certain kinds of policy questions, some of which we ourselves will talk about in other sessions at this meeting, but what it hadn't tried to do and what Childress said and it's in that quote, said that he thought this Council might usefully do was to push the discussion to what he called the deeper level by thinking through some of the fundamental anthropological questions that are buried in the policy issues. And that I take to be the aim of the staff paper that we're discussing in this session, to invite us to think about such questions and the special contribution that we might make.

I want to highlight just a few aspects of the paper, a few questions that come out of that seem to me central for any report that we might produce. The whole of the paper may be, if I may sort of gently put it this way, a little too interested in teasing out every possible question that arises and I'm going to try to follow each one of those. I'm just going to take up a couple of things.

The passage from Hume that the paper cites somewhat later notes what, in some ways is obvious, but still worth noting that we face changed circumstances, where once the body and its parts might not have been thought of as alienable possessions, in part simply because we lacked the technology to act on that way of thinking anyway. This is no longer true. We're now able to think of the parts of the body as resources available to others and then even as commodifiable resources and here, as elsewhere in life, what we're able to do is hard not to do, even if it's in some ways disturbing.

The first thing I'd say is that I don't think we should suppress that sense of being disturbed. We should try to learn from it. As we've had occasion to note several times along the way in previous meetings, even the dead body retains something of its character as the place of personal presence. Back in June of 2006, an Al Qaeda-led group in Iraq released footage, you probably remember the incident of two corpses that it said were those of U.S. soldiers who had been killed and the video showed a decapitated body and several dead bodies being stepped on.

And if you think about it, that kind of ritual dishonoring of a corpse can't have any point or it has its point only because even the corpse still signifies something about the body's inseparable connection to the person and the presence of the person.

Likewise, in what I thought and I think everybody maybe thought was one of our most interesting sessions, Thomas Lynch, the poet-mortician, gave us a definition of the human that goes a lot deeper, I think, actually than some definitions philosophers might give us. What Lynch said was is ours is the species that keeps track of its dead. That was his anthropology. Keeps track of the persons whose identities are so closely tied even to those now dead bodies. If that is true of the dead body, then how much more so of the living body?

Stuart Spicker, in another session that we had, invited us to think about this. You may remember he even gave us German terms to think about it. Then you know you're serious. Distinguishing between what he called a korper, the material organic body and what he calls leip, the lived body. That was his translation of that, in which the leip, in which the person, the subject is not separated from the body but is one with it and it is thinking, acting, and feeling.

That really is where it seems to me any report we make in some ways does need to start. We don't need German terms probably to accomplish that. But not maybe starting where the staff paper starts with the analogy of machine and body part, but starting with that understanding of the lived body and its wholeness and fullness.

The paper does, the staff paper does capture this, I think, quite nicely at several places along the way.

For instance, in its discussion in the sense in which an organ is not itself a whole, depicts, for instance, a person's respiratory system as involving much more than just the functioning of the lungs, but involving other parts of the body and even in a sense every cell of the body in the intake and outflow of air. It seeks to capture that.

The paper also points to another place to the way in which the immune response is not just a matter of certain cells, but the person responding to the foreign object, the way those cells retain their connection to the whole lived body of the person.

So the organ has to be thought of first in connection to the bodily whole. A kidney doesn't urinate, a person does. An eye or an optic nerve doesn't see, a person does. So we can only understand those as human actions, seeing for instance from above, from the perspective of that whole person, the lived body. And it's this, I think, that has always troubled and disturbed people somewhat when they think about separating or alienating the organ from the person and grafting it into another body of another person.

As I've said, I think it would be a mistake just to suppress that sense of being disturbed because we need it to point us to the sense of the truth about the kinds of beings that we are as embodied wholes, and not just as collections of parts or resources. We have, though, managed to find a way to retain some of that sense while still detaching organs for transplant, and to do this without thinking of the organs simply as a resource. We've done it with the language we're given, which again is I think inseparably connected with where we need to begin. It is not language precisely about motives of agents so much as the nature of the act, and the gift, whatever the precise mode of the giver retains a connection to the giver.

The gift is not utterly and completely detachable from the giver in the way that the commodity is detachable from the seller. So the giving of organs has been the way we found to achieve some good ends for those who are in need without denying that there is also something troubling about what we're doing. It's been a way of trying to do justice to two concerns that just ineluctably stand in a certain tension and the giving language which seems to me important for us to contemplate. It's been our way of doing that.

Anyway, this is where I think we might start the staff's paper. In particular, its decision of the sense in which an organ is not a self-sufficient whole points us in this direction. It's related to that deeper contribution that Jim Childress said we might usefully make. And I think it will make anything we say about specific policy questions more illuminating when we set them into the context of reflection of this sort.

DR. PELLEGRINO: Thank you very much, Gil. What we'll do is go ahead and have Dr. Alfonso Gómez-Lobo's comments and then open up the subject to discussion for the whole Council. Professor Gómez-Lobo?

DR. GÓMEZ-LOBO: Thank you. It's always dangerous to speak after Gil, but I'll try to do my best. I saw the staff paper, very good, excellent staff paper as an invitation, a two-fold invitation. On the one hand to reflect on the philosophical assumptions that underlie the practice of transplantation in general, but I thought it already pointed towards one of the most contentious and concrete points mainly, whether the Council is prepared to endorse or to reject a regulated market in organs.

Now I am going to start by admitting that I find the philosophical issues surrounding organ transplantation perplexing, very perplexing and this may be one more case where philosophy is accused of being useless. Nevertheless, I will try partially to overcome my perplexity and offer first the conjecture about background assumptions that are, I think, unconsciously at work in the proposal, for example, to open up a market for organs. And then I'll end with some suggestions for the discussion.

In the second section of the staff paper, there's an argument that the machine metaphor is at work in much of the conceptualization of transplantation. And the paper shows, I think, in a lucid manner how this metaphor is in many ways misleading, it is insufficient. It leads us the wrong way. For example, it makes us think about organs only as detachable and replaceable body parts. And if they are, why not sell them as we sell automobile parts?

For the purposes of our discussion, I would like to take the metaphor one step backwards. In the 17th century, many thinkers were seduced by the idea that the body was a machine and La Matrise is not the only one. But this was possible. The very conceptual possibility of thinking about the body as a machine was due to the prior assumption that humans are really compounds of two substances, a body or extended thing and a soul or thinking thing. And this view of human nature is known in our profession as dualism.

Now one of the really surprising things in Anglo-American philosophy in recent decades is that dualism consciously or unconsciously is making a comeback. The standard talk about "a fetus becoming a person" requires, I would argue, dualistic assumptions. It requires a body that begins to exist and something quite different that arrives at a later point. A prominent defender of such a view talks about the body being first unoccupied and then occupied by the mind. These are his terms. And of course, by analogy something similar may happen at the end of life, the famous "two death" theory that says in the case of persistent vegetative state, the person dies, say on a given date and then something different, namely the body continues to live and dies later on.

Now this, I think, is a very pervasive view presently in America although it may be, as I said, consciously or unconsciously present in people's minds. Now if we are essentially minds that are associated with a body, then our body is strictly speaking alien to us. And it seems to me that there's a short distance between being alien to me and being alienable, being something whose parts I can sell, something that is over which I have property rights.

As any student of the history of philosophy realizes, dualism, whether Cartesian, that is envisaging body and an immaterial soul or what I would call post-Cartesian or post-modern Cartesian envisaging a body and a material mind, any form of dualism is deeply unsatisfactory.

Now I will not rehearse the arguments here that have been fielded against it. That's typical of our modern philosophy class, but among the many inconsistencies and paradoxes it generates, I would ask you to consider the fact that almost obsessive care of the body occupies center stage even for those who see themselves as essentially minds. I interpret this as a form of performative self-refutation. Perhaps it signals that they do not really believe that their body is an appendage to their minds.

Now what is a reasonable alternative to dualism? I think it is the view that underlies the admirable contributions submitted by Leon to the dignity volume, namely, that we are unified beings, that we're not two-fold, that we're unified beings whose bodies are essential constituents of the person. In my opinion, this entails in a very profound sense that the slogan "our bodies, our selves" is true.

Now what does this contribute to the problems we were discussing? Well, consider for a moment the difference between freely selling one's body in prostitution and freely gifting one's body in committed love. In the language of dignity, the former amounts to treating one's body, that is, oneself as a mere means for the sake of an extremely sick game. The latter, on the other hand, manifests human dignity in one of its highest forms. The action itself is an end and one treats their — oneself and the loved one as an end in him or herself.

I suggest that we might be able to extend this analogy to the selling versus the gifting of body parts. In both cases, the core of our humanity is at stake, but in one of them it seems human dignity is violated.

To this invitation to start from the assumption that his or her body is not alien to a human being, an obvious objection can be raised and will be raised, I think. At the receiving end, there's also — in transplantation, there's also a body, there's also a person who will be preserved if she can buy an organ. In generalizing, we have been urged to consider how a market in human organs will be for the greatest good of the greatest number.

The shape of the argument is well known. It is the utilitarian argument. Perhaps we'll be forced to revisit once again the old dilemma, do good ends justify any means or are there means that we should refrain from using even at the cost of giving up those ends?

I take it that this should give us sufficient material for a discussion. Thank you.

DR. PELLEGRINO: Thank you very much. We'll now open the commentaries and the paper to discussion. The authors of the paper are standing by only to answer technical questions, but we'd like to have the conversation focused on the Council's own opinions and responses.

We'll follow our usual procedure, indicating your desire to speak and we will take each of you in order.

DR. FOSTER:Alfonso, just a very brief question. We've heard "our bodies, our selves" very often. If I have my gall bladder out or somebody takes my uterus out or if I remove pituitary glands and both breasts or something for cancer and so forth, am I less myself? Is that person less of self because a very great deal of our discussion is about donation or selling of organs and so forth. But obviously, you don't literally mean that my body, myself, if it's missing any part then I'm less myself any more than I would be less myself — I mean not in the same sense I'd be less myself if I became cruel or uncaring or something of that sort.

DR. GÓMEZ-LOBO: Well, that opens up the next step in a discussion of this topic, namely, how should we understand the body which is something that I did not touch upon.

There is, of course, the well-known fact that there are — maybe they can be called "dispensable [parts]" of the body. There is this whole problem of what would constitute something like the core elements in the body.

Now, of course, it's not that I'm less of myself, but the question that I'm trying to raise is if there's an integral unity between myself and my body, then the idea of selling organs becomes deeply disturbing, whereas I think that gifting does not.

DR. FOSTER:Well, why is it disturbing to you if, let's forget about the selling and so forth. It doesn't disturb you to give away — to have something taken out, let's say surgically and so forth, but on the other hand, if it's taken out to save a life or something of that sort that's terribly disturbing and as a consequence the human dignity is lost. I'm trying to get the connection between those things.

If you come to me as your physician and I tell you, you know, what I've got to do to you to save your life you might decide you'd rather die, but by and large you would do this. And I'm still struggling with the idea of how it's a loss of human dignity to give or at least to sell an organ to save a life as opposed to taking an organ out to save a life of your own. I mean I just don't really see it.

DR. GÓMEZ-LOBO: If I may. I think it's a very subtle point. The case of extracting an organ say an organ because of gangrene or illness, I think has to be conceptualized as an action for the sake of the good of life, particularly if it is threatening to your life.

Now the case of gifting the organ, I think should be conceptualized in the same way, whereas the selling of an organ has built into its very structure the idea that this is just a means to obtain an extraneous end which is the money. That's the point I think at which there is an important difference in the action itself. It's that there is a goal built into it, a goal which makes say the body or the organ into a means for gain.

DR. PELLEGRINO: Dr. Kass.

DR. KASS: Let me disagree with Alfonso and try to respond to Dan's question.

I don't think that the essential feature here is the exchange of money. If there wasn't something disquieting about the — let me speak luridly, of the self-mutilation, not for the body's own benefit, we wouldn't really be worried about people making a living at it or making gain.

I think the difference has to do with for the same reason that we don't allow (just) anybody to cut a body, we cut the body for the sake of the well-being of that body, usually not for any other reason and that's why live organ donation is at least a dilemma for the medical profession.

It's not true, I think, that in all cases where parts are removed to save a life that the person doesn't somehow feel in some way diminished. I'm not going to speak the language of dignity. People who have hysterectomies or who lose a breast for therapeutic reasons, in the one case, want to have reconstructive surgery and many a woman would feel somehow diminished by this, even if it's lifesaving.

But I think the question has to do with the difference between the amputation of a part for the sake of the whole of which that part has now become threatening and the gratuitous amputation of that part for some extraneous good. And I think if you start this discussion only with the buying and selling, you will not see the kind of question that Gil wants to start us with and I don't think you can do this — I don't think you could sort of see the difficulty if you start where Alfonso says giving not for one's own bodily health is not a mutilation. It becomes a mutilation only when there's commerce involved.

So that would be my — it doesn't settle the question of what we ought to do, but there really is something disquieting about the transfer, especially of non-renewable parts to diminish the wholeness even if for good purpose. And on balance, we might be able to justify that good purpose, but there is some kind of new relation of oneself when one does this. I think.

DR. PELLEGRINO: Thank you. Dr. Eberstadt and Dr. Carson in that order.

DR. EBERSTADT: Leon just touched on the question that I wanted to pose which is whether members of the Council found a discontinuity or a break between the — in terms of their discomfort, between the prospect of transfer of regenerative body parts and the prospect of permanent transfer of non-regenerative body parts. Is this the sort of moral or conceptual line in the sand that people see as being the distinction that we need to focus on?

Alternatively is any sort of transfer of body parts, regenerative or not, a question of discomfort?

DR. PELLEGRINO: Thank you. Dr. Carson?

DR. CARSON:Thank you. I find the whole discussion a little disturbing in the sense that we're trying to come up with our recommendations about how a body market should be crafted. And there's a premise that we ought to even be delving into this and the reason I find it disturbing is that there are portions of our population who would be considerably more tempted to sell their body parts than others for economic reasons. And they might find an easy mechanism for obtaining sustanence when, in fact, if they didn't have that option they might go out and do something else that might be more constructive for society and less destructive for themselves.

It's hard to become part of something that would facilitate something like that and I wonder if perhaps more energy should be devoted to finding ways to encourage organ procurement in situations where the organ is no longer needed.

DR. PELLEGRINO: Dr. Meilaender and Dr. Lawler next.

PROF. MEILAENDER: Back to your question, Dan, which is an important one. When I spend a couple days grading 30 exams, as I did recently, and say to myself, gee, I could have been a doctor instead of doing this, I think about the fact that sometimes we talk about doctors. Classically, we've talked about physicians and surgeons. There's something special about being a surgeon, especially problematic actually in certain respects. And if any of us just think gee, I could have been a doctor, it would be one sort of thing I'd have to do to become a physician and if I wanted to become a surgeon, I would have to repress, really learn to repress certain fundamental impulses, for good reasons, but nevertheless, to repress them, because that is a sort of harm that's done in service of the well being of the person.

I mean it's in that sense even surgery has been troubling in certain respects. We find reason to do it in service to the person, but that's part of what I meant. Part of what I meant in my remarks by saying that we shouldn't suppress our sense that something is troubling, even more troubling in removing the organ in order to transplant it into another body. There may be reasons to do it. But if we don't suppress what bothers us about that it will at least force us to think about whether there are ways of doing that that sort of don't deny the truth of what we're doing and ways of doing it that sort of blind us a little bit to the truth. That's the issue, it seems to me.

DR. PELLEGRINO: Dr. Carson, did you want to respond?

DR. CARSON:Only in the sense that first of all as a surgeon, I don't like to do surgery. Most people find that rather strange. I don't like the sight of blood. They say how can you be a surgeon? I would say would you rather have a surgeon who likes the sight of blood?

(Laughter.)

In fact, perhaps, you do have to suppress certain emotions and tendencies in order to do what you do and it's a very good point to bring up, but still I have to keep coming back to the issue of are there better ways to get organs? I mean how many people die every day with absolutely great organs that, in fact, could be used to save other people's lives?

And the emphasis is not where it needs to be. And until we reach a point where we're taking maximum advantage of those organs that are being wasted, why would we start taking organs from functional individuals?

DR. PELLEGRINO: Dr. Lawler?

DR. LAWLER: Let me say first of all, I agree with Gil's theoretical argument against organ transplants, organ sales, rather. And Ben's practical objections. Nonetheless, I think this is a tough issue in terms of guiding American public policy as opposed to reaching philosophical conclusions. For example, I agree with Alfonso's argument against dualism, but I wonder to what extent our country isn't built on dualism anyway, for example, the core of our understanding of justice is rights.

I understand our rights seem to come mainly from Locke and according to Locke, we're free from nature. And to push ourselves away from nature as far as possible, and Locke does seem to understand the body as our property. So this does present a problem that Locke may — his understanding of rights may be contrary to the high-falutin' understanding of dignity of Leon and Gil.

Second, there are certain practices that we have which should disturb us in terms of precedence. For example, the final arguments made by Leon should make plastic surgery illegal, because what is — cosmetic plastic surgery, obviously — but what is cosmetic plastic surgery but self-mutilation for money? If you look better, you'll make more and we allow this. I don't think if I give up a kidney for whatever reason, I'm diminished in the same way a woman is, if for some reason, has to give up her uterus or give up her eggs. Nonetheless, we allow women to sell their eggs. And that surely diminishes the woman who does that more than the person who would sell a kidney.

And in general, in this report, there is a fine criticism of the body as mechanism which I agree with, I guess. If you understand the body simply as mechanism, if something is broken, then you knock yourself out to find a replacement part.

On the other hand, in the footnote on page 8, footnote 8 on 8, and the material in the text that accompanies that, the alternative presented is we should present more emphasis on preventive medicine to fend off "the tragic necessity of transplantation," but why is that a tragic necessity? It's like Paul's tragic necessity of having to have a bypass operation. Operations aren't tragic. You get old, things happen and as a result you need to be fixed up. There's no way we can create a transplant-free world as long as transplants are legal. There's no way we can prevent organs from going bad completely.

And so prevention seems to me to be mechanical in this sense. You shouldn't have let the machine run down anyway. You should have changed the oil. You should have gone in for the tune up and then you wouldn't need a new carburetor or whatever. So it seems to be a mechanical solution to a mechanical understanding.

Preventive medicine really doesn't fend off the understanding of body as mechanism. It's just another understanding of body as mechanism. So we have a lot of practical problems here in my opinion because of the right space, character or regime or country which may be based on faulty philosophy and especially Leon and Alfonso and Gil have pointed that out to us. But we now have to figure out how to turn our deep insights into actual public policy that will be convincing to people in our country.

DR. PELLEGRINO: Thank you. Gil?

PROF. MEILAENDER: I just could resist responding that a criticism of some views on the grounds that they are theoretical and high falutin'. Appeals to Locke, concepts of rights, concepts of logical consistency — all rather theoretical and high falutin' sort of notions.

(Laughter.)

DR. LAWLER: I accept the criticisms completely.

DR. GAZZANIGA:I bring you greetings from the West Coast where it's 70 degrees, pleasant, a place we could meet.

(Laughter.)

I want to report on Saturday night's dinner party we had at our house. The conversation was lagging a little bit, so I threw out on the table the question of organ sales and we had present that night two neurologists, a surgeon, a bioengineer, a producer of movies and you can imagine what followed.

I can report that no one — as 12 people weighed in, the vote was pretty close,

6-6, and it cut across politics. It cut across religious beliefs. Nothing seemed to predict whether you're for or against organ sales. But one point came up that Dr. Carson made that I thought maybe would be actually productive and maybe the staff could figure this out that the number, to close the organ gap, so we don't have to have this question of sales, how — what would be the number of organs that could be procured, harvested, whatever the word is you want to use from community hospitals where thousands of people die, but they don't have a trauma unit to save these organs.

By simply structuring things differently that there was a surgeon on call for this occasion and would FedEx and all the rest of the mechanisms we have today could generate thousands of organs under current ethical standards and brain death criteria and all the rest of it.

That was a live question that no one seemed to have a sense of, but a suggestion as to how this gap could possibly be closed, because we think of only procuring organs at major medical centers with trauma units and all the rest. But finally, as the evening wore on and we were now into a rather nice cognac, the fundamental question that people left the table with, of course disagreeing about, but that the fundamental aspect — because we also brought up Gil's, this is how I prepare for the meeting — I throw a dinner party and throw out all the questions about Gil's dwarf-tossing as a provocative example of what should be allowed in society and what should not. And the line that took the evening was that the greatest affront to human dignity is not allowing me to choose. So that then means if I wanted to give my kidney or if I want to give my whatever and you don't, fine. I give it, you don't.

How do we get to the discussion that you want to impose your view on this matter on me and I think that maybe that we're going to get to that tomorrow morning, but I won't be here tomorrow morning. So the flow is on one of the factual points, how many organs are we missing and could solve and so we don't get to this touchy question, which it is touchy and let's just face it. And two, and then maybe tomorrow and as we think about it, this overall question, how can you override my view or how come I want to override your view. I think that's a fundamental question of human dignity.

DR. PELLEGRINO: Dr. Foster.

DR. FOSTER:I just want to respond to your question. It's not realistic to say get organs in community hospitals with a surgeon on call. If you're in a transplant center, I mean even if you've got trauma, you've got to fly, you've got to have people who are skilled in doing this. I mean a general surgeon that's on call who does appendicitis and so forth, can't do that.

I mean you're talking about monstrous amounts of money if you want to try to make community hospitals a place to recover organs, even though there are a lot of organs that are lost that way. So I don't think that's a realistic thing and we've heard over and over again that in most of the major centers or in many of them they're now up to recovering 70 percent. I think that's why Ben is wrong about this too. Seventy percent of the organs that are available, so you know, you've got to have a plane on there. You've got to have ambulances. The costs would be just enormous. So I don't think that one is a good way to go.

DR. GAZZANIGA:So that point came up, of course, and there was an extensive discussion, so if you took an advanced community hospital like Santa Barbara's, they thought, the surgeons there thought with slight adjustments they could do it. I stand down. These are the issues that would have to be looked at.

DR. PELLEGRINO: Dr. Carson?

DR. CARSON:I thought about that issue as well and you know the fact of the matter is the concept of getting these available organs is an excellent concept. The question is how do we facilitate it? And to say that because we don't have a mechanism in place right now to facilitate it, let's not think about it is probably not the correct way to do it. The better thing to do is to say well, how do we put in place a logical mechanism and perhaps devote some energy to that.

DR. PELLEGRINO: Professor Dresser.

PROF. DRESSER: This is a more simple-minded way to think about things, but I guess for me these intrusions on the body are a violation and should only be done for a very good reason. So one very good reason is a treatment purpose, to ameliorate an illness for the good of the person.

Another good reason may be to help with research, to help another person live through an organ donation. But it seems to me we should have a very good reason for engaging in this violation. In terms of selling organs, I guess the further question is we are not talking here at this point about prohibiting live organ donation. We're talking about whether it should be promoted more than it is through payment. And so for me, even though I do believe that the payment question is connected to the underlying disquiet about taking the organ, that's true with altruistic donation, I do think we need to focus on this commercial aspect. Is this something that ought to be in the marketplace? And for me, I have a lot of questions about whether taking that step is justified to promote more violations of the body.

I remember a while ago in a discussion on transplantation, a physician saying it seems to me in our society we're developing, we're moving toward a sense that people have an entitlement to an organ, if they need one. And this particular person didn't agree with that idea. But it does seem to be underlying some of our sense that well, we have to get more organs. Of course, it's compassion and it's wanting to help more people, but is there a sense that we have to keep going further and further to get these organs? How far should we go, should we start paying people?

I think that's a very difficult question for me. I'm very hesitant to endorse that particular step.

DR. PELLEGRINO: Leon?

DR. KASS: Actually, it's very hard for any of us to keep from getting into the specific policy questions that are actually the subject of the subsequent sessions, so I would at least like to encourage us to think about this prefatory material where certain larger philosophical questions which define the kind of framework, at least articulate the various human goods that are before us are to be elaborated. And it does seem to me that I would like to endorse in part the spirit of this paper as modified really by Gil's and Alfonso's suggestions that we don't simply take up this philosophical issue beginning with, and defined by, the organ shortage.

A lot of how this comes out, quite apart from the specific recommendations, our real contribution here will depend upon whether we have cast the intellectual and ethical and human framework in a sufficiently rich way. That's something that the people more preoccupied with the policy details will not do. It's something that we have done fairly well in the past and are on the way to doing again.

Gil and Alfonso have talked something about how one should begin really thinking about what is the human body and our stances to it. But Mike Gazzaniga introduces, for example, not so much on the policy question, but a question of the standing of autonomy, whether it be freedom or other people, if Richard Epstein were here, would talk about the right of contract and things of that sort, other kinds of considerations that belong in this discussion early on. And Rebecca, too, is pushing us, I think, to an additional conceptual question about in a way the limits of medicine here and our need of how do you know when to set some kind of — let me start a different way.

Let me take one of the facts that's really crucial. If we are really on the way to a situation where many of us are going to die of vital organ failure for which there are, in principle, replacements, and we're not talking about just the premature deaths of a 40-year-old with kidney failure, but people in their 70s and 80s whose organs are failing, have we created or are we creating a presumption that those who stand in the way of providing the replacement organs are somehow morally and medically failing our citizenry? I think some discussion of that in an early part here, I don't mean necessarily a conclusion, but at least to raise this as a kind of question, I think would be a real contribution.

DR. PELLEGRINO: Thank you.

DR. FOSTER:I don't know why I'm talking so much, I never talk on this thing very much, but an important issue that you just mentioned and the general thing is not about — we're all going to die of organ failure at some point. There's no way to die without organ failure unless you're shot or something like that.

The physician — the simple rules of physicians that have been there since antiquity are to cure disease and prevent premature death when that is possible. The adjective is premature death. Now it might be premature for an 85-year-old who is an Einstein who is healthy, too. I'm not defining — but it's premature death that we're talking about here.

Secondly, to relieve symptoms when cure is not possible. And thirdly, the priestly function of the physician, to comfort always, this is the mercy function which is there. So nobody is arguing about giving a kidney transplant to a 95-year-old person who has got Alzheimer's disease.

Moreover, as you and I talked about briefly this morning and I certainly agree with, we ought to put this policy thing to later on, but even in the pool of kidney transplantations there is already a large pool that will never be transplantable, even if you had enough, because of other on-going problems. When you're on renal dialysis, you've got terrible heart disease, that's what you die from then, not from kidney disease and so forth.

So there's a huge pool that we're not going to do anyway, but I just want to emphasize that I don't — because somebody — Floyd asked me about a sentence in here about ultimately you're going to die of kidney failure or something like that if you live long enough. Well, most kidneys keep working. It's your heart and other things that die, not for kidneys when you get old. So premature is a very important issue in all of this.

DR. PELLEGRINO: Dr. Kass.

DR. KASS: I guess the question is when technology is very powerful, the definition of "premature" is flexible.

DR. PELLEGRINO: Dr. Schaub?

PROF. SCHAUB: Yes, I wanted to say something about Peter's comment about our Lockeian heritage. Peter points out that in Locke the body is regarded as property and there's a teaching about self-ownership. But I wonder whether that teaching about body property necessarily leads to a teaching about the body as mechanism. I mean there's also a teaching in Locke about inalienability and we might find some resources there. I mean I think it's very clear that in Locke there are some limits on what you can do with your self/body. So for instance, you can't sell yourself into slavery. It's self-contradictory to the very notion of rights, to sell yourself into slavery. So it's not a teaching of pure autonomy and it might be that we could sort of trace out some of the misuse of rights talk and the way in which autonomy has sort of gotten out of hand and Locke might give us a better grounding on this.

Also, I think you can make the argument that Locke argues for a kind of rights infrastructure that will lead us to see the person in a certain way and that would protect the kind of inviolability of the person so you know with the prostitution example, I think you could perhaps make a Lockeian argument that there are even certain limits on how you sell your labor. Yes, you can sell your labor, but maybe certain ways of selling your labor sort of undermine this rights infrastructure.

DR. PELLEGRINO: Dr. McHugh.

DR. MCHUGH: I'm not sure I can add a lot to this wonderful conversation we're having, but perhaps it's useful to pick up on what Mike, another theme in Mike's wonderful anecdote of that California dinner party.

We could make a movie out of that and do very well, but he said he came to a conclusion there that was very Californian and that was the only offense to human dignity would be to — if I quote you right, Mike, correct me, would be to interfere with what my rights to choose what I wanted to do.

Well, this is an issue that confronts psychiatrists and sociologists all the time and was picked up, of course, by that brilliant politician/sociologist Daniel Patrick Moynihan when he spoke to the American Sociological Society and ultimately wrote the paper in the American Scholar entitled "Defining Deviancy Down."

And to some extent this is what we're talking about here and is picked up a little bit by what both Gil and Alfonso said. That is that we're dealing with behavior, behavior that confronts us with things that strike us at one level as potentially deviant and wanting to find a way around it.

Now the point about California is that they have given up on that functionalist concept of Dirkheim and Talcott Parsons and anything. And if you even mention the word deviants, they think you're a Flat-Earther. You come from outer space.

But when you live with patients and live with people who are troubled by what they're choosing and what their choice is being forced on them some times, sometimes from within, but sometimes often from the advocacy groups that you would despair when you hear what they're promoting, you wonder.

And so I don't think that we can begin with the idea from California that the dignity depends upon our right to choose everything. And there are certain things, as Diane says that we don't permit people to choose because we realize allowing them to choose that, whether it be slavery or suicide or various other kinds of things, we deform the society in which we're in and I believe with what's been said here too, that a traffic in organs would ultimately deform our society in ways that I would disapprove of.

And then finally, a little bit about prostitution. This is a problem that turns up again and again in the classroom, particularly when I write about "how I deplore it. I get approached now by lots of people who say to me, how can — I don't even like the use of the word 'prostitution.' Dr. McHugh, I want you to speak of sex workers,"to which I always reply, dear, you don't understand sex. You don't understand matrimony and you certainly don't understand prostitution.

DR. PELLEGRINO: Thank you, Paul. Dr. Hurlbut.

DR. MCHUGH: Oh, the last line to that, Leon wants to remind me that there is a last line to that. With prostitution, you don't pay the prostitute for the sex, you pay her to go away and never come back.

DR. PELLEGRINO: Thank you. Dr. Hurlbut.

DR. HURLBUT: A vivid example of what Paul was just talking about, there are cases, rare, but notable, where people actually want to have a limb amputated for some issues of identity or sexuality and I think we immediately recoil from that kind of voluntary mutilation and don't find an adequate retreat in some notion of positive pluralism based on varied identity.

So I agree with Paul and I'm a Californian, too, by the way.

(Laughter.)

But I want to go back Nick's comment, a good question as to whether, if I understood it right, whether our distinction here is between renewable/nonrenewable or what the staff paper calls replenishable versus nonreplenishable. And while I think there's something to that notion, otherwise we wouldn't allow the sale of blood and we think nothing of the sale of hair and we sense that with eggs, what we may have a wrong impression that they're renewable, but at least that's what the prevailing sensitivity is on this issue.

But I just want to throw this general idea out that there's something more to the issue than that distinction, that it is not an adequate distinction to take us too far, but it will take us some ways. And what I would like to suggest is that whatever we do in thinking about this issue, we need to lay out principles that are adequate for a whole range of transplantations or treatments of body parts as parts distinct from the whole, not just for the obvious things that we're dealing with now.

When we first had this discussion, I brought up the notion of womb transplant and it just fell to the floor, but now it can't any more because it's in the newspapers. And we need to be aware that we're talking about a whole range of transplantable human parts that aren't even on our radar yet, so to give you an example, in animal species, they've transplanted testicular tissue, taking it out of one living animal's testes and injecting it into another to — and thereby conferred fertility in infertile animals.

We might some day be talking about ovary transplants. Now we're talking about womb transplants. These seem to me to be different in character, even though they may be argued to be therapeutic in the sense of overcoming some deficiency. They are not quite in the same category of seriousness or at least human significance.

I would just like to throw out a notion for thinking about this a little bit that there might, in fact, be circles of significance, concentric circles of significance in human existence that different body parts have different meanings and that we should be very, very careful before we endorse one broad concept for all transplantations.

I guess that's good enough.

DR. PELLEGRINO: Thank you, Bill. Further comment, Dr. Gómez-Lobo?

DR. GÓMEZ-LOBO: Yes, even at the peril of taking things back to California, I'd like to comment briefly on Mike's remarks because I think they're very important. I think that if we do as Leon encourages us to do to discuss really the philosophical assumptions or philosophical underpinnings here, I would say that that libertarian view is one in different forms. One of the major positions in American society today, it's the idea that anything that limits my freedom is an imposition based on beliefs that someone else has and I don't have.

And it's very important to think about that whether it's correct, whether indeed it is true and whether it's a sufficient way of approaching not only these issues, but many, many issues. In fact, I would say that position is one of the positions that regards the body as alien, as different. Why? Because I choose to regard it like that and I should be free to sell my organs, for instance.

Now what possible objection is there to that? Isn't there something very real in saying, "Well, I do as I choose and you do as you choose, but don't impose your views on me."

I think it would be fine and dandy if one lived in total isolation from other people. That, I think, is the main presupposition, tacit presupposition of the view of that sort for why — and I think Ben was pointing to this — I may be free to buy organs and there may be a poor Salvadorean woman, unemployed somewhere in California, willing to sell her organs and it seems that there would be a free transaction, freedom on both sides.

And yet, I think that a reasonable analysis of the situation is really that it's totally unclear that there is a social context for which that is happening and there are questionable aspects of the freedom of someone who is in dire need, someone who has children, can't feed them and suddenly can sell a kidney for $1,000. It's the consideration of all of that context that I think traditionally has led to the notion that human freedom should be subject to limits. I mean no one can hold that anyone can choose anything.

There are limits to freedom. The classical formulation of it was harm to others was the principle, but of course, the question of harm then arises, and what ways when harming someone else. Once all of that is considered, it seems to me perfectly reasonable, perfectly reasonable that there be limitations of freedom. And one of the things I think we're doing is trying to get the broad view and see whether again there may be reasonable limitations of freedom in the domain with which we're dealing with transplantation. Thank you.

DR. PELLEGRINO: Thank you. Dr. Hurlbut and Dr. Schneider, in that order. I just want to point out we're getting close to the end of our time, so rapidly. Thank you.

DR. HURLBUT: Do you mean to imply that the moral relates only to facilitating social interactions? What I'm wondering here is don't we kind of know ourselves in the mirror of other people? In other words, doesn't the society as a whole actually deliver to us our morality? It's more than a social function, right?

DR. GÓMEZ-LOBO: Sure. Well, this was only a brief recap of the classical argument against extreme libertarians. Of course, there are myriads of other considerations, it seems to me.

DR. PELLEGRINO: Peter?

DR. LAWLER: Let me agree with Alfonso. Maybe the problem is creeping and creepy libertarianism that the imposition of the spirit of contract and consent into all areas of life and so a lot of people and not only in California, agree with me, in fact, that the dignity limits the choice that aren't absolutely necessary. And we have to say that that understanding of dignity is autonomy, more or less, does depend upon the understanding of the body as mechanism that is rejected in this report.

And Paul is right to say that our argument against prostitution is eroding. This idea that prostitutes are really sex workers is taking over, unfortunately. And so the only objection to prostitution we have left is that it's unsafe for the prostitute. The contract is unfair, but the moral objection to prostitution is on hard times today. And of course, a limit to our choice would be slavery, but I don't really see how selling my kidney, assuming it's safe, would be subjecting myself to slavery.

And I think the point of the paper and Gil, Alfonso and Leon is there's more to this than health and safety. I agree that we really don't have sufficient knowledge to know that selling your kidney is really a safe thing to do over the long term. I agree that people who sell their kidneys are very likely to be exploited and this kind of freedom is likely to be very bad for the poor. "Get off welfare, you've still got two kidneys," more or less. But having said all of that, I think the point of this philosophical discussion has been to show there's more to it than that because what we want to do is reject the very idea of body as a mechanism from which we can alienate ourselves.

I agree with Alfonso, the real point is to reject dualism and embrace Gil's understanding of the body or something like that. But I have to say, this is a very radical thing to do in the American context and we shouldn't underestimate how radical a thing this is to do in the American context.

DR. PELLEGRINO: Professor Schneider, then I see Paul. That will have to be the last one, Paul.

PROF. SCHNEIDER: My dinner party was two nights ago, safely far from the West Coast. I was in Texas and the dinner party there involved a person who is probably alive and certainly relatively healthy because he had had a kidney transplant. And the discussion involved whether or not he should have accepted the transplant from his son. He had resisted doing that for a long time and finally acquiesced. And if there was a consensus on the table, it was that the son had done something wonderful and the father had been wise in accepting the son's gift.

And this comes to my mind because I'm having a hard time following this conversation because I don't have the right moral instincts. I don't have the moral instinct that there is something repellent about the initial giving of something of your body to somebody else. And as I'm understanding part of this conversation is an attempt to predict how people are going to respond socially to a world in which transplantation comes more often.

And I think that the pretty striking unanimity here would not be reflected in very large parts of American society, not on the libertarian grounds, which I have not a lot of sympathy with, but because I think that people very widely will not respond with the kinds of emotional reactions and perceptions that people here so widely have.

I am extremely uncomfortable with quick predictions about how people react to new things. It certainly is possible that if you bought and sold kidneys that people would come to regard them as another piece of easily alienable property, hardly different from corn, wheat and coffee cups. But in fact, I think that's quite unlikely and I think that before we make easy guesses about people's responses, we ought to think much more complicated and I would prefer empirically based ways about what the social context of these transactions would be and therefore how they would be perceived.

I think that people's reactions would very largely be like the reaction at the dinner party. The person who didn't die was a person who was valued by lots of people and the thing that his son was able to do for him was something that the son was likely to regard as the best thing he ever did in his life.

DR. PELLEGRINO: Thank you. Dr. Meilaender?

PROF. MEILAENDER: I'll make one quick comment about what Carl said, but I had something else I wanted to say. I didn't think we were making predictions about how people would think. I thought we were talking about offering whatever guidance we might have about wise ways to think about it.

But I wanted to come back to the — in a sense, we've had two themes arise, just sort of the body and its significance and the autonomy choice theme. And they're not entirely separate although figuring out how to really put the two together wouldn't be an easy thing, but Hobbes in his De Cive has the thought experiment where he says you know, suppose that men came into being this way, that they sprang out of the ground like mushrooms without any connection to each other. And Hobbes uses the thought experiment because he's trying to think if people are really that separated, how would you get them back into something like civil society and the answer is only through choice, only through contract, only through will. That's what you do.

And the problem with the thought experiment and what makes that strong libertarian notion of autonomy mistaken is that human beings don't come into existence like mushrooms. They come into existence with a bodily connection to others so that the body has a kind of personal significance from the very start.

Now you know whether we can sort that out in ways that are illuminating or not, I don't know, but I actually don't think that these two subjects are entirely separate subjects. I think they're related and the sense that almost everybody has that there are some limits to choice, there are some things we won't let you do even if you seem freely to choose them is not just a sense that we draw back at the issue of choice, but it's connected with the kind of beings that we think we are and the kind of beings that we think we are has something to do with the body and that's there right from the start because we're not like mushrooms.

I do think these two subjects are connected in ways that we might sort of fruitfully illumine.

DR. PELLEGRINO: Thank you. Paul?

DR. MCHUGH: I just wanted to follow up a little bit on what I was saying so that I could make myself just a little bit more clear.

Once again, we're talking about behavior, behavior of doctors, behavior of donors, behavior really also of recipients and behaviors are judged by the ends they serve and partly we're struggling about what these ends are. The patient who receives the donor, the behavior of accepting a donor, is of course, often to flourish as Carl has said and that's the thing that makes it so wonderful to know that we can do this and rescue people who were lost.

I, after all, I said before at the Brigham, when they first did these twin kidney transplants back in the mid-50s and it was a very interesting time because some of these issues came up then, but one of the things that was clear was that the recipient was really receiving something.

The question of the doctor in this thing, what his behavior or her behavior serves, well, it certainly serves an aspect of curing, treating successfully the recipient, but is the doctor benefitting the donor? It's likely a reminder to us that the Hippocratic Oath begins by saying again and again I'll enter to benefit the patient. And it's a bit hard when you're sitting with a donor to know how much you're benefitting her or him to take his kidney out.

Now it turns out that it's a lot easier to take kidneys out than it was back in the '50s. Now they do it with laparscopic, the donor is out of the hospital within a day or two almost. They probably go home the same day, so the danger is a lot less, but I remember back then when we worried a lot about these donors and what we might be doing for them and we did feel a sort of sense of this, that we might be deviating from our role as physicians and that we needed to alter our sense of behavior and to define deviance down a little bit to make this happen.

The only thing I think we're talking about or at least I'm talking about at this moment is not to make regulations or decide on certain things, but just to lay out the groundwork for understanding where we are. And these wonderful dinner parties, one in Texas and one in California, are so illuminating because they reflect just what you're saying, that what is the common feeling of people?

And then finally, I want to get back — I got into this prostitution business, Diane brought me into it.

(Laughter.)

And I just want to make this point about how this logic works out for psychiatrists anyway and it does work out in that sequence and I've raised this because Dr. Lawler is making a point that we're losing ground in our concerns about prostitution. Ultimately, like anything else, it goes back to the beginnings, and what is the behavior that we're talking about and what ends does it serve.

And the behavior we're talking about is sexual behavior. And although human sexual behavior has many things to it, it is, psychiatrists say and think, nature's way of turning a stranger into a relative, okay? That's what it is. That's how it's done. We come from relatives by biology and we become relatives through our sexual life, okay? And that's the reason, of course, why in matrimony, we say in matrimony this is the relative, not only the relative I've chosen, but this is the precious one I've chosen. This is the person [without whom] for me life wouldn't be life.

And therefore, the line with the prostitute is you don't pay the prostitute for sex. You can get sex everywhere. You pay the prostitute to go away, don't write, don't call, don't do anything. That's what you're paying for. And that's why it's debasing in the behavior because it's cutting at what the behavior is intended to do.

DR. PELLEGRINO: Thank you, Paul. We will re-assemble at 10:40. Before we do so, may I complete one prior brief comment, very brief comment.

For some relief, the fact that I'm an internist and therefore my invasions of the body are somewhat superficial, then so no one needs to worry very much about that. But the second point is reiteration of a fact that it's very important, as we move into the practical questions to look at the philosophical foundations for them.

Given Alfonso Gómez-Lobo's very, very modest claims about philosophy, I do think that fundamentally, the ethical issues that we talk about with principles have to be grounded in some philosophical perspective. And the complexity of the discussion this morning and the diversity of opinion is I think one of the issues that's the foundation of the difficulties in bioethics today. We have different perceptions of what it is to be human, different philosophical anthropology, gives you a different system of ethics, and certainly it's illustrated here when you look at the body, how you treat it, what it is, it goes back to the fundamental question, the ti esti question that Socrates always asked — that is, the question of "what is it?"

Thank you very much. We'll reassemble at 10:40.

DR. FOSTER:Mr. Chair, one sentence. Because everybody has been talking about prostitution, I didn't think we'd be doing that, but I want to tell you in about a sentence about a dinner party by a distinguished physician. When I was getting ready to go to medical school and they were trying to recruit us and this distinguished physician said medicine is the second oldest profession in the world and like the first, we'd like to do it for love, but we just got to do it for money.

(Laughter.)

(Off the record.)

SESSION 2: THE ETHICS OF ORGAN ALLOCATION: POLICY QUESTIONS CONCERNING GEOGRAPHY, AGE, AND NET BENEFIT

DR. PELLEGRINO: I think we can reassemble, if members of the Council will come in.

(Pause.)

The next session is dedicated to the question of organ allocation which is running through all of the discussions, of course. We move from the philosophical now to the practical, but they're never separable. I presume we'll remember that.

I'm going to ask Dr. Eberstadt to start off the discussion. Dr. George isn't here yet. He usually comes by train and I hope he hasn't had too much difficulty.

Dr. Eberstadt, will you take us off into whatever direction you think we should move at the outset?

DR. EBERSTADT: Thank you very much. This fine discussion paper focuses us upon questions of efficiency and equity and allocative algorithms as regard organ allocation.

When one is talking about allocation and efficiency and equity, these themes take us very quickly into a slightly more distant realm, but not in the relevant realm, I think to our discussions which is the realm of economic reasoning and economic processes which are not touched upon directly in this discussion paper, but I think — I don't think it would do injury to our discussion to cut directly to this part of the chase. So I think our discussions will focus upon some of these questions in this session and further ones.

Broadly speaking, the economic process is a process of maximizing human welfare or attempting to maximize human welfare under material constraints through exchange transactions and through choices about allocation. And when the economic process as just described is at work, economists expect a couple of sorts of results to accrue. One set of results involves a certain sort of efficiency, an efficient allocation of commodities, of assets and also if one accepts the initial starting endowments of assets and commodities of the actors in question, one expects also for a certain sort of equity to result.

And in one strand of economic thinking, this type of equity is referred to as Pareto optimality which is a notional concept in which one person's welfare cannot be improved without diminishing the welfare of someone else.

Now as we have already discussed this morning, an economic mechanism or market mechanism entails a commoditization of assets or items and as we've already discussed, there is certainly with human body parts, ample opportunity and risk for self-mutilization, self-degradation and demeaning or diminution of some sort of humanity in such transactions.

There is something else that happens in the workings of the ordinary market mechanism or an economic process besides commoditization, just less seldom discussed. And this is transmission of information, transmission of information about personal preferences, human preferences, and that modulated sense, desires. Any sort of algorithm of the sort that's discussed in this discussion paper and other ones is a preference function. Economists would say that's a preference function, but it's a preference function set by a single actor, in this case, by the state actor.

And economists will tell you that there are certain characteristics and attributes of single actor preference functions. It's in the unhappy workings of certain economic systems, it's what one saw in central planning systems, in Soviet-style planning approaches. And one of the risks to an economist of a single actor preference function is that one is likely to have either gluts or queues, either gluts or shortages that emanate from such an algorithm.

A more market-like process of determining an algorithm inherently brings more information about personal preferences to play and even in an open society it's not clear that a single actor preference function can entirely mimic the results that one would see from a more market-like process.

Now as we've already discussed in our first — we've already talked in our first session about some of the concerns and, I think, legitimate worries that members on the Council and members of our society have about the march towards commoditization of the transfer of body parts in the United States and internationally.

And I think we'd have to say that if the horse hasn't exactly left yet, the barn door is already pretty wide open and we've talked about different aspects of this already this morning. There already is a market in the United States and elsewhere in certain bodily components. We've mentioned blood. We've mentioned eggs, semen. We could add, we could mention bone, tissue, skin, which is defined in some government documents as an organ. And with respect to non-regenerative body parts or organs, we already have something approaching a market in rentals. Rent-a-womb for production of babies and with the prospect of further technological advance, it may not be so fanciful to think that we'll be speaking about the prospect of rental of other nonregenerative organs in the future, rather than permanent assignment.

It may, at the moment, seem fanciful to talk about renting a kidney or renting an eye, but I don't know whether that will seem so fanciful 20 or 25 years from now. So this line, perhaps between permanence and impermanence may be blurred even further by innovation and technological advance in the future.

Although we've already gone rather far in this process of commoditizing the human body, there arestill things that overwhelmingly make ordinary citizens in our country recoil. And we mentioned some of those already in our discussion this morning. We don't think it's cool to allow people to sell themselves into slavery. We don't think it's cool to allow our daughters to be sold into marriage. And although we have an active discussion about whether prostitutes are sex workers or not, we still don't think it's cool to allow a child to be sold for sex.

So the question is at this fairly late stage in the game, where do we, as a Council, see the legitimate role of market or market-like functions to be in this question of the transfer of human body parts. What is fair game for the definition of the human welfare that the economic process will set automatically about to maximize and where can we and where should we draw the line about the sorts of processes that economic functions might see to make more efficient?

I'll stop there.

DR. PELLEGRINO: Dr. Kass?

DR. KASS: I don't know, Mr. Chairman, whether you want sort of more general comments or whether you would welcome some discussion of some of the particular pieces after Nick's very fine, sort of review.

DR. PELLEGRINO: We certainly would like to get to the specifics, if possible, but the general would be useful as well.

DR. KASS: I do want to go, I think, to the specifics and in particular the age question which it seems to me is especially if the take the longer range view of going to be critical, between 1998 and the year 2005, a five-fold increase in the number of transplants of people, are now for people over the age 65 and the numbers are going in that direction. Almost 60 percent are age 50 and over. And I gather that age figures somewhat in the algorithm already, at least with respect to kidneys, with respect to pediatric candidates, restricted to donors of a certain age, if I'm not misunderstanding where we stand. But I think this would be a hard thing to sell as a matter of absolute principle and there would always be exceptions that would lead one to want to deny it. But it does seem to me that there ought to be some way of expressing — I'll speak — this is simply my own view.

I think there ought to be some way of expressing the preference that age should increasingly count increasingly more and in a negative sense. Not only because of the net benefit where the age figures into the calculation of the net benefit, but primarily really on something like the argument that has been developed here, the fair innings over a lifetime kind of argument.

Carl Schneider's very moving story about the son and the father, those are conversation-stopping and refutations to any other kinds of thoughts, but in general, I am much more sympathetic to a father who would want to give his kidney to the son than the other way around. And as a matter of social policy, it seems to me that especially if we take Dan Foster's general premise, premature death is what we're after, that we ought not in an aging society, which many, many more people on this list are going to be, who have had their fair innings, that we ought to find some way to correct for that kind of tendency and I don't know whether people agree with me on this or not. But that was the strongest thing that I got coming out of this. The geographical thing doesn't bother me very much. But on the age thing, I think especially to see where we're going, and I would hope we have at least a vigorous discussion of this and see whether there's an agreement on some kind of formulation principle.

DR. PELLEGRINO: Thank you.

Janet?

DR. ROWLEY: As one of the older members of the Council, I support Dr. Kass.

DR. PELLEGRINO: Thank you. Dr. Kass?

DR. CARSON: I think what Leon brings up is vitally important, as our knowledge increases and our technological abilities advance. When you think back to the last turn of the century, not the one we just went through, the average age of death in this country was 47 years. Now you can reverse those digits and still add a couple. There's no reason to think that that's not going to continue. At some point it becomes deleterious to the subsequent generations if all of the people continue to live who have all the money and all the power. That's one aside.

The other one being vitality. As a person ages, obviously their vitality decreases and when it comes to the allocation of organs, it seems to me that we would want to allocate them in such a way that we achieve the maximum for our society, so I don't think really that this is — I mean if somebody has an alternative view, I would certainly love to hear it, but I can't imagine why there would be an alternative view to that.

DR. PELLEGRINO: Thank you.

Gil?

PROF. MEILAENDER: Let me stretch the limits of your imagination.

(Laughter.)

We should, at least, think through reasons to go in the other direction from the one Leon sketches. He may not be entirely surprised to hear me think it through from this angle. I realized as I worked through, especially I think this staff paper, I realized that actually thinking as I do about the issues we talked in the first session, I'm not really — I understand about the change, but what I'm about to say — I'm not really very content with the system that makes equity and efficiency the two criteria, because I'm not very happy with the criteria of efficiency which inevitably leads you to think of organs as resources, to be efficiently or inefficiently distributed.

So that from the start, I came to realize I'm actually inclined toward a view which would say make a medical determination about who is able to benefit from a transplant and who is not. I mean obviously, you can't transplant a kidney into somebody who can't really benefit from it. Make a medical determination about that and then have a lottery, among all those — a perfectly equitable procedure. Maybe not as efficient as some others, but perfectly equitable. And it is a way of treating people equally.

I realize — and I don't want to press it too hard because I understand the — I think the fair innings argument also has a certain kind of compelling force to it. And I think really the reason it does is because you can look at a human life and actually should look at a human life from both of two angles, not just one or the other as a kind of a finite life that has a trajectory over time and it's different to be 35 than 65. And as a life in every single moment is equidistant from eternity. And therefore is governed by those temporal categories.

A lottery approach or equity alone, let's just say approach, thinks of lives as equidistant from eternity, not just as stretched out over time. So it's not that I sort of want to go to the wall arguing against some kind of fair innings sort of argument, but I think there are powerful reasons not to be drawn to it. I think it is part of a general argument that inclines us to think about efficiency in relation to organs in ways that may be a little incompatible with the way I'd like to think about them in general. And therefore sort of a reluctant — just not strong opposition, but it's reluctance to just be drawn into that.

DR. PELLEGRINO: Peter?

PROF. LAWLER: Let me sort of agree with Gil on this insofar as this equity thing seems to me so difficult and accept as a lottery which at least is democratic.

For example, I agree that there is something creepy about the general tendency in an aging society for resources to go from the young to the old which is — which will be, in general, our new principle of redistribution.

So if a son or daughter gives a kidney to a parent, that's fine as an act of generosity, we can have no opinion on that. But as a matter of public policy, a distribution of kidneys that gives, in general, sends young people's kidneys to old people or healthy kidneys which are, at the moment of death, healthy even though the rest of the body is not in such good shape, to people who are old and messed up in many ways, also seems to me to be perverse and so I'm against this.

On the other hand, to go down the equity road a bit more, that might mean that a fine upstanding person with 2,800 people dependent on his who is 70 and is otherwise in perfect health because of a stern, physical regimen this person has had his whole life, and because of the great work this person is doing in so many areas of society doesn't get a kidney over some 35 year-old bachelor slob who needs a kidney because he's abused himself in any way since he was 12. And so that doesn't seem fair. And once you acknowledge that, you start to acknowledge that any kind of formula you're going to have is going to be deficient and a lot of this algorithm stuff is kind of pseudo science. I'm not against it. I'm not criticizing the way they do things, except there's a deep arbitrariness beneath the surface, as Gil pointed out, so there might be something to this lottery thing. That once you're shown to be able to benefit from a kidney, why finally can we make too many judgments beyond that that aren't, in some deep sense, arbitrary at the end of the day.

DR. PELLEGRINO: Rebecca?

DR. KASS: Could I just ask a question?

DR. PELLEGRINO: Yes.

DR. KASS: Does that mean, Peter, that you would be in favor of our recommending that they do away with algorithms altogether, just do a lottery?

DR. LAWLER: I'm not sure, but when I read about the algorithm it's so easy to say well, I guess, but.

DR. PELLEGRINO: Rebecca.

PROF. DRESSER: I don't want to change the subject, but I wonder if it would be easy to get rid of a few things so we could focus on the tougher questions. The role of geography, whether being in the same region should somehow count for the recipient. For me, I don't see an analogy between one's family and friends and people who live in the same state that I do. I don't think that community is defined by living in the same region. So I don't think that should count myself.

The other point is that to the extent that shipping the organs reduces their vitality, I think it should count. So this wasn't clear in this discussion paper to me. It almost sounded as though well, it doesn't matter, it could go from New York to California. It wouldn't make any difference in the vitality of the organ and I think with cadaveric, it definitely does.

The other point I wanted to make, we're really not asked to do in the paper, but the paper notes this practice of registering in multiple centers and ever since I heard about that I thought that is really unfair and we shouldn't allow it. I wonder if anyone has any arguments in favor of it or if the Council thinks we could at least say we don't think that's ethically justifiable. It's unfair to people who can't manage to get on more than one list.

DR. PELLEGRINO: Thank you.

Dr. Eberstadt?

DR. EBERSTADT: I think that the argument for a lottery is a coherent and legitimate alternative to sort of a utilitarian calculus. It has a coherence of its own. What I would observe is if we begin to argue that a 35-year-old has more standing for a transplant than a 70-year-old, we have to explain why we are not embracing a utilitarian calculus here.

There are a lot of metrics which already exist in health planning and all of them are, although their progenitors may not have recognized this, they're all relentlessly utilitarian.

The calculus, for example, of years of potential life lost maximizing the years of life saved is intrinsically utilitarian. There is a new, and in the view of its own inventors, an improved version of years of potential life lost called — it has the infelicitous acronym of DALY, disability adjusted life years. You are supposed to sum morbidity and mortality into one sort of GNP-like perfect measure.

Simply to note, if we are going to say that age matters in allocations, I think we also have to say whether we are doing this for utilitarian reasons or for other reasons and to make this explicit.

DR. PELLEGRINO: Gil?

PROF. MEILAENDER: Not to take back what I said before, but to complicate it a bit, I do think that — and I believe when Leon started us it was the fair innings argument that you were using. I think that's a little better than like just the net benefit possibility. If you just think of human life years, you're not a part of some whole called human life years. Individuals aren't.

And that, I think is problematic in a way you were talking about, Nick, that maybe the fair innings argument isn't. At least, if I'm forced to plump for some age-based criterion, the fair innings argument looks to me considerably better than some clearly net benefits approach.

DR. PELLEGRINO: Dr. Gómez-Lobo.

DR. GÓMEZ-LOBO: I'm sort of eager to come down on these issues one way or the other. With regard to the role of geography, I very much endorse Rebecca's view. I'm very skeptical about this idealization of community in the United States today. I think that one of the reasons why democracy works is not because there are these intermediate communities of loyalty and fidelity — they simply don't exist. We relate more or less directly to the state.

So in that regard, and if geography does not affect the vitality of an organ, I would say we should go for option 1, that is a unified system which also would ban the double-dipping, of putting oneself on two waiting lists.

With regard to age, I became convinced that there is a very important point of justice and equity here, which I'm afraid might not be solved by a lottery. I'm skeptical of the lottery because a lottery is a fair procedure if there is more or less equal standing among the people who go into the lottery. If there are uneven factors, for instance, if someone is extremely sick and you go into a lottery with someone who is not that sick and the person who wasn't sick wins, there seems — I would be concerned about that.

Now I just don't like Dan Callahan's view that there should be a cutoff point. I don't see any way of reasonably justifying that, of saying everybody 65 years or older doesn't get it or so. And that's why I'm inclined to endorse Option 3 in which we simply keep the algorithm, but do it in such a way that age goes into it with all of the other factors, but that it not be a deciding factor.

And with regard to the role of net benefit in organ allocation, I must overtly confess I haven't fully understood it, so I'm not sure whether I would support or reject the KARS proposal. If someone can illustrate that for in a better way, maybe I would come down on way or the other.

Thank you.

DR. PELLEGRINO: Yes.

DR. GAZZANIGA:This section is looking at the issues of geography, age and net benefit and so forth, is important because UNOS has failed us in this area and that there are all kinds of discrepancies. One knows about confined and you can — you may be four on the list in county, 326th on the next in getting a kidney or liver. And so those problems, we're all aware of and one of the reasons we discussed open markets and the rest of it is to solve these problems by having another method of organ generation.

So the question I have is before we get too deeply into whether we consider age and how we bias these things and whether we rewrite the algorithms, is do we — if we vote on one of these options, are we implicitly supporting the UNOS position here and if so, I think some of us would choose not to vote on this, because we haven't dealt head on with alternative methods.

DR. PELLEGRINO: Thank you.

Gil?

PROF. MEILAENDER: A couple of comments. I'm not — again, I'm not trying to push — the lottery idea for me is simply a way of thinking of helping to think about what we're presupposing in the system as it is right now, but there's a sense, Alfonso, in which in the most important sense everyone who could genuinely benefit medically from a transplant does have equal standing. I mean when the issue is life or death, life as a whole comes into play and it seems to me that they are equal in the most fundamental sense there. But then I wanted to comment on the geography question, just to persuade all of you that I'm out of it on these issues.

I think I'm the only person who's expressed any reservation or any sort of support or sympathy for the geography consideration previously, and I may be the only one still, but I mean there are a couple of things we're thinking about. I'm not federalizing and thinking of it as a national thing is once again a way of thinking — I mean here we are, we've got this resource and we should see to it that it gets fairly distributed. But we don't follow that out everywhere. We certainly don't think that you shouldn't be free to give a kidney to somebody in your family, for instance, that's wholly apart from geographic considerations.

In other respects, we don't follow it out. We're not pushing to make this international, rather than national. Now there might be some logistical problems right now, but those can be overcome in the long run and why — we're just human beings here, why stop at national boundaries, after all? So that I think that thinking of us just as citizens of this country, as opposed to other localities, may miss something about who we are and again, it moves just in the direction of efficiency. Gifts are not governed by considerations of efficiency only, after all. So again, I'm not — I'm not going to go to the wall for this one. This may be less important than the age one and less philosophically interesting. But I would just not run roughshod over some of those distinctions in life.

DR. PELLEGRINO: Dr. Hurlbut.

DR. HURLBUT: I have some of the same sentiments that Gil does, just so you don't feel too alienated here.

(Laughter.)

I think that the ties of attachment also have their geographic kind of attenuation and I wonder if there's any — there are any practical studies on the effect of a national pool versus local donation. It might be that people — that an individual might donate more readily to his local community.

It's true with financial donations, right, and requests to communities. Could it possibly be true with organs?

DR. DAVIS: There is no evidence about the argument that you donate, you'd be more willing to donate if you knew that individuals receiving the organs you donate were or are members of the same local community.

DR. HURLBUT: Is that because there are no studies?

DR. DAVIS:There have been no studies, that's correct.

DR. FOSTER: But that's much more important, I suppose the community, if you're talking about living donors. If you're talking about cadaver donors, I mean it's already drawn pretty much nationally and there are new companies been formed to improve the preservation of the organs while they're in transport, instead of just putting them in cold ice, you know and giving them so glucose so that there's some energy there. I mean they're now treating them more like a bypass in coronary arteries. So I don't think that we're going to have a problem of taking an organ to go to California and so forth, but already — so maybe, I think, Bill, if it's a community where you're giving living, I think you might be. But I don't think that's operative right now in terms of the fact that the kidneys move all over.

DR. HURLBUT: I didn't mean practical transport, I meant the feeling that invokes donation. We just tend to feel related to the groups we dwell with and —

DR. PELLEGRINO: Dr. Schaub?

PROF. SCHAUB: Yes, on this and there might be more practical consideration. Also, the staff report mentions that the smaller OPOs are hostile to the notion of a national waiting list. I think that would be worth taking seriously. If their prediction is right that they would be driven out of business, that would actually have a long-term unintended effect on the efficiency of this and it might decrease donations because now people have to travel farther to do it.

DR. HURLBUT: You know, one thing that was mentioned later in one of our documents is that some states have compensation for donors in ways that other states don't. And there again, the local environment is deciding that. Shouldn't they, in some way, benefit from their policies?

Dr. Eberstadt?

DR. EBERSTADT: This isn't only a mischievous question, but it seems to me that you and to an extent, Gil, have raised the question here regarding geography of what one's — not only what one's attachment is, but what one's affiliation is and that bears on the question of what your identity is, I think.

If we were to think about geography, as a component, would we also think about ethnicity and if we were not to think about ethnicity, why not? How does that — how is that qualitatively different from consideration of geography?

DR. PELLEGRINO: Bill?

DR. HURLBUT: I thought about that when we were talking about paired donations and list donations, because it struck me that both for efficiency purposes and for connected purposes, I mean if you're really going to do an equation for efficiency, I made a list of considerations. There are differences in life expectancy based on race, education, sex, lifestyle things like obesity, smoking, driving record. So why not put those into the efficiency equation? Well, we won't because we sense there's something wrong with that and I think that's the answer to your comment.

On the other hand, I think we would also feel something odd about list-impaired donations that were only say to members of the AAAS, for example, or your local church or something like that. Something feels wrong about that. But maybe we should explore that.

DR. PELLEGRINO: Dr. Dresser?

PROF. DRESSER: Just to push this, I do think living donation situations are different in terms of region and that if a living donor prefers to give to a friend or family member, yes, I think we should support that. But if I were donating a family member's organs, and I happened to be in a small region and there were only five people on the list so the organ would go to someone who didn't have as much ability to benefit or wasn't in as much need as someone in the next region over, I would be unhappy about that. I would rather that it went to someone who was in greater need than someone in my region.

DR. PELLEGRINO: Other comments?

Leon?

DR. KASS: I mean if we're staying on this geography thing just a little longer before going to back to maybe the more difficult one, I think professors and intellectuals are among the cosmopolitans and don't feel that kind of attachment to place whereas — especially with regard to living donations.

I think that there are identities that people identify themselves with their small towns and with their small communities and the likelihood of mobilizing that — especially if we're thinking now about the spirit of giving that might move people, I think it's a lot easier, as it is with charity, in general, to mobilize people for things closer to home, however much philosophically we might sort of see that we're really all part of some totality.

That's partly why I don't come out where Rebecca does on this one.

DR. PELLEGRINO: Alfonso?

DR. GÓMEZ-LOBO: This may be a question for Nick. How realistic is the reference to small hometown? I ask this really from my own experience. When I came to this area, I lived in a place where the normal turnaround in school was almost 30 percent. I mean it was a totally transient population and if I look back, I would say I had no links to virtually anyone just because they lived there. Anybody that lived there that I was connected to was due to being at the same university or something of that sort.

That's where I'm a little bit scared that we're looking at this in a sort of romantic view of New England township in the mid-19th century or something like that. Is that realistic? Is that a realistic view of how we live today?

DR. PELLEGRINO: Peter?

DR. LAWLER: Gil raised the objection, I think, to regarding kidneys as simply resources to be distributed most efficiently. But they, in fact, once we reach this point, that's exactly what they are. There's just no getting around that.

So all the comments have been made as far as I can figure are speculative concerning what we generate, the maximum number of kidneys and distribute them most efficiently. So you have these speculations concerning importance of regional attachment and all that.

And then the practical objections to a national market raised by Diana and Bill, which seemed pretty powerful, but they are practical objections related to efficiency in terms of generating the maximum number of organs and really nothing more.

And so Alfonso's comment and all that, is it realistic? Will we have to have a study that shows whether it's realistic or not. We really don't know. I mean we seem to have different opinions on this.

So the bottom line seems to be this geographical thing, what to do about it, cast in terms of what is the most efficient way of maximizing the number of kidneys. I don't see anything else really going on here at the end of the day.

DR. HURLBUT: I want to clarify that I didn't mean only in the matter of efficiency. I think it had something to do in my feeling with the whole relationship of donation itself. So it wasn't just what would maximize it. That was another consideration.

DR. LAWLER: Okay, I forgot about that one. The one I was asking about is different states have different policies and some policies are more generous to donors, shouldn't those states reward those policies? That to me was a good practical objection to a national policy which could be eradicated by national policies with respect to how donors are treated and all that.

So I have no answers to any of this except to say I'm suspicious of the regional attachment thing as an independent variable here. I'm open to the possibility that it might — these practical objections might point in the direction of some geographical criteria is more efficient. But I have some sympathy too with Alfonso's objection that all of these comments might have been a tad romantic, all things considered.

DR. PELLEGRINO: Professor Schneider?

PROF. SCHNEIDER: I first want to say that I live out in the country in Michigan and there's nothing particularly romantic about it, but it's also true that a very large number of people live within 25 miles of where they grow up, even in the United States today. And I always worry about this fabulously unrepresentative group trying to imagine how the world works by thinking about their own lives.

But I'm not sure if I'm extending Peter's point by saying that I have become very uncomfortable with this discussion. We're talking about quite an elaborate system that tries to balance a whole lot of things that we have very weak grasp on. And we're talking about making public policy here by quickly reading some intelligent comments about a few parts of this large operation.

And I've been moved by a number of things people have said. Despite the story that I told, I agree with Leon and I'm sure that the father would have much rather been the one to be able to benefit his son. Nevertheless, to go from those sensible and even right comments to giving the country advice about how it ought to make this complicated system work, makes me, particularly as a lawyer, very nervous.

DR. PELLEGRINO: Dr. Foster?

DR. FOSTER:I think I mentioned this in the previous discussion about geography, but sometimes the geographical thing, the motivations there are not for fairness in the distribution, but for money-making purposes in the hospital.

If you live in Dallas County, as opposed to living in Fort Worth, you have a five time longer waiting time to get an organ. The biggest public hospital in Dallas is called Baylor University Hospital. So they built a new hospital across the country line in Grapevine, Texas because they could get many more transplants done quickly there than in the City of Dallas.

Now in most major centers, the most profitable thing in a hospital is transplantation. Now a lot of that is bone marrow transplantation. But at the Mayo Clinic, the most profitable thing is transplantation. So geography was impairing the ability of the Baylor Hospital system to make as much money as they wanted to make. It had nothing to do with the people who are waiting in line on the other side. So there are other things that are maybe a little unfair in terms of geographical distribution that are not related to the donors or the patients themselves.

It isn't sort of a fair thing that you can get a liver a lot faster if you live in Jacksonville and you go to the Mayo Clinic there than if you live in places that might even be better equipped to do it. So I don't think this is a trivial thing to say well, okay, let's just — people live within 25 miles of where they do to do it. I think — and probably, you know somebody like that, someone could do it. But we could at least weigh in to say that there ought to be serious thought given to equalizing the changes of getting organs just in the sense of fairness and justice, it seems to me.

DR. PELLEGRINO: Professor Schneider.

PROF. SCHNEIDER: This brilliantly illustrates the point I was trying to make I think. I am constantly being surprised that new things that I didn't know that strike me as enormously important in thinking about these sort of things and I've been repeatedly persuaded by almost everything everybody has said leads me to believe that I don't really know what I'm doing.

(Laughter.)

DR. PELLEGRINO: Paul?

DR. MCHUGH: I also agree with Carl that every time we have these conversations we learn more about the varieties of things that people can do.

I've always had an uneasy feeling that I've said several times before about these algorithms and things of this sort and since I've made this point before about Dan Callahan, I'll make it once again. He's awfully ready to tell me what I can't do when I'm at the bedside of somebody who presumes that I'm working for him or her without judging the worth of my effort for that person. This is what causes me to have all kinds of troubles about algorithms, age limits, things of that sort.

I am just thinking about what Carl said about that little family. I mean a man age 60 who takes a kidney from a son age 30 is probably also the recipient of his son's allegiance and love thinking certainly if I could do that for my father when I was 30 and he was 60 and I could have him around for another 10 years, it would have been a tremendous help to me, given that after all, we emerge in the middle of other people's lives and our lives go forward.

So I'm very uneasy about all these matters. But I just want to come, after all of that, I want to come around to the one thing that I thought was reasonable about geographical things and that was the possibility that therefore geographical regions could count on being able to get at least their local kidneys. If we had a national policy where kidneys were directed towards a call, there would be great sinks of draw from the large cities and the larger states and smaller states might have their kidneys drawn from them because of that. Again, the electoral college in this Council is a dubious thing to mention, really, because of things before.

But there's something to be said with the electoral college in the same way, that small states and large states have some kind of level of common equality. And that's why I would be in favor of some form of geographical thing, given that I dislike all aspects of the algorithms.

DR. PELLEGRINO: Gil?

PROF. MEILAENDER: Just a comment on Carl's point which is a serious one, I think, as sort of — as a kind of chastening effect on where we think of going.

I mean there may be some aspects of this that there are so many factors involved in that that it would be difficult to be confident that in saying you should change this factor, you wouldn't actually be changing a number of other things.

There may be some parts of this staff paper under discussion though that it would be possible to have an opinion about that didn't depend on those sorts of considerations. Now I don't know. But for instance, the last option, the net survival benefit, the overall benefit conceivably one could object to that simply on the grounds that this was the wrong way to think about people's lives and distributing organs, whether or not it was more efficient or not. That is, in fact, what I think. I'm not saying that you should think that. I'm just saying there's an example where I think in a sense in theory we could say something that didn't depend on a whole bunch of information that we either don't have or can't be sure that we understand correctly.

Some of the other things may be there wouldn't be any reasonable way to speak on them without a lot more confidence that one were clear, just about a bunch of empirical factors.

DR. PELLEGRINO: Leon?

DR. KASS: This is also to follow the conversation started by Carl's very sobering observations. There are things here that are really at the level of principle is perhaps too lofty, but sort of general moral judgment that don't necessarily translate into the precise details of how you work things out. But I think we could say something about whether and to what extent we think age or age beyond a certain point counts in these discussions and allow it to a more extensive conversation to figure out just how much weight to give it and Gil also said whether he has some concerns as to whether equity and efficiency are the sufficient principles for guiding a kind of algorithm, whether you like algorithms or not, for thinking about the ethics of organ allocation.

So mindful of those limitations, and here to pick a slight quarrel with Paul, Dan Callahan sticks his neck out to provoke a kind of discussion about limitations and he gets beaten up. People are partly responsible, as I know very well for how they get beaten up unfairly.

(Laughter.)

But I don't think it would be preposterous for a nation having suitably debated this matter to say look, it was not immoral of the Brits to say we will not do dialysis on somebody after a certain age, even if it does mean that in certain kinds of cases the person has lots of people depending upon him and is the — that's a way in which a community could, as a whole, begin to decide difficult questions of allocation, of its scarce resources under considerations of equity and this is something I think we could say something about.

I rather like the fair innings view of the matter. You guys figure out how to translate it into precise policy and then let the people argue about it, fight about it because that's what the political process is.

What we can do is, I think, weigh in on the moral principle and I don't know if there's anybody here things that in the end those kinds of general age considerations are irrelevant in this particular matter of allocating organs to an increasingly aged list of people who need it. Janet has joined me. There may be a few others, but I don't — are there people who disagree with that?

DR. PELLEGRINO: Well, I — may I say a word?

(Laughter.)

As I think the oldest person in this room at 87, I can pop up and say a word about age. For myself, I think we have come to a point where we must begin to think about some limitation, not only with organ transplantation, but all the other things that are available now in biotechnology. There's got to be some kind of a limit.

The social impact of people being prolonged forever, the illusion of mortality which runs throughout our society is a consequence of biotechnological capabilities seriously raises the question, as you brought it up at the beginning, Leon. Now where it should be, I don't know. I don't want to establish any numbers, but for myself, I do think living within that age group would be most susceptible to a policy saying there's a limitation. I do think the illusion of mortality runs very widely and we keep forgetting the fact about we're putting organs into total systems which themselves are fallible.

And we're not really replacing someone's kidney and giving them the rest of their lives free. That kidney goes into an organism which has a lot of disturbances going on. And if you talk about regenerative medicine and the possibility, the Holy Grail of the regenerative medicine enthusiasts of being able to develop organs outside the body and then put them in, how many times do we do it? What limit is there?

Just leaving aside the economic issue, I think we have to deal with the question of illusion of immortality that's beginning to invade the older, older people and I'm in that group and I understand it. For myself, if you want to vote, I'm willing to have some limit put on the kind of entitlement I might have, people my age might have to endless supply of technological advances. What it is, I don't know, but for myself I would state very, very clearly, I think there should be a limitation.

DR. FOSTER:I am also for the fair innings model of limitation.

DR. PELLEGRINO: Dr. Carson and Dr. Meilaender.

DR. CARSON:This is obviously not a new issue in medicine. If you look through let's say neurosurgical literature about trigeminal neuralgia and treatments for trigeminal neuralgia, there are whole lists of things that can be done, percutaneous procedures, medications, stereotactic radial surgery, cutting the nerve, or you can go microvascular decompression where you open the head and actually go down with a microscope and operate on the brain stem where the trigeminal nerve exits.

It's generally agreed that that should not be done on people who are greater than age 70. Why is that generally agreed? Because people over that age are prone to more difficulties, just because of the general state of their physiology at that age. Is it ironclad? Absolutely not. I've done that operation on people as old as 90, under extenuating circumstances. But the whole concept of having these algorithms is actually based on logic and we should recognize that with the caveat that there should be life savers. There should be ways to bail out as necessary and I think that's the reason that we have brains, so they won't have to mindlessly follow some type of a maze.

DR. PELLEGRINO: Dr. Meilaender?

PROF. MEILAENDER: One of the times when we had Dan Callahan address us, I think we've had him a couple of times, actually, over the years. I think I took him a little aback by saying that he was really a religious thinker. I recall this. But what I had in mind was that what he really wants I think and thought was that we should learn to change our desires. This relates to your comment.

He comes at it with policy suggestions, but what he really wants is that we should learn to desire differently.

Now I think there's a lot to that in the sense that if I'm 75 and I could use a kidney and I do everything I can to get one and you regard that as sort of less than noble behavior, to use a favorite adjective of Leon's on my part, you know, it's probably not the most noble thing one could do.

It is a little different though if you're thinking about a public policy that attempts to treat people equally and then I think you have to — you do have to think about what that equal treatment means. Now it doesn't necessarily mean identical treatment, but we do have to think about it and treating us equally is not probably designed to making us all act as nobly as we might. I mean I don't know if that's what it involves.

I mean Ben's comments again suggest that there might be just certain medical reasons that someone doesn't qualify but the harder question is once you've got your group of people who can medically qualify, exactly how you go about treating them equally after that while still making certain kinds of distinctions, at least some people would be inclined to make.

I mean I'm drawn to some of those distinctions, but I'm a little more — I haven't signed on yet in too quick a way.

DR. PELLEGRINO: Peter?

DR. LAWLER: That was more or less what I was going to say. As admirable as Dan Callahan might be, he is a religious thinker. He does have a certain opinion on human desires that we cannot turn into public policy really, so I wouldn't endorse Option 2 on page 6. I'd be more an Option 3 guy who would see the wisdom of integrating age into a formula that included many other factors.

And there is a difference, a big difference between dialysis and kidneys, obviously. What the British did may or may not have been immoral, but in our — and maybe we never should have established dialysis as an entitlement, although we really can't go down that road for all sorts of reasons.

But we can afford to give dialysis to everyone over 65 who can benefit from it as a matter of fact. There's no scarcity in our dialysis resources, but in fact, there is a scarcity of kidneys, so the issue is really quite different. So there would be reasons for denying people over 65 kidneys that wouldn't really apply to dialysis. And so I do think age is one factor to take into account. I have no objection to the thing as one criterion, among many. But I wouldn't absolutize it on the basis of some doctrine concerning exercising hubris and a fool-hardy attempt to postpone the fate that awaits us all. He is exactly right on this, but we live in a high tech society, basically secular, where we don't really seriously try to limit people's desires. But there are other reasons besides that for taking age into account, that's one factor among many, I think.

DR. PELLEGRINO: One interesting observation I have from this position here, listening to the conversation, you actually have been setting a very informal, but flexible age range when you talk about — not you, but anyone in general — that talk about well, I wouldn't have an objection to giving it to a 65 year old, but a 95 year old, you're setting a range here, there is an implicit kind of limit. We don't know where it is. No one wants to assign it. But I think there is one. And what we should do about it is something else. I'll leave it to the Council as a group. But again, I come back to this question of that underlying, illusion of entitlement to immortality and the failure to recognize our finitude. How do you do that? I'm not going to set that as a public policy. But I think there are without any question in the minds of people around the table, some limits and it comes out in the way you give your examples.

Yes? Bill and then Rebecca. I don't want to miss anybody.

DR. HURLBUT: In saying that, and I know this is a little beyond the scope for our report, but we might add something in that there are serious questions, even beyond the resources questions.

DR. PELLEGRINO: Oh yes, very definitely.

DR. HURLBUT: And also you introduced an interesting idea that I had actually intended to introduce earlier. I think that there are differences between some kinds of interventions and others. If, for example, we get to the point where we can grow all organs, tissues and cells, apart from the body in factories, we still might not want to do some things versus others. And the meaning of transplantation might depend on the nature of what the organ is and what the system — to give a blatant kind of example, suppose we could grow gonads outside the body, which does not strike me as a technically impossible task. Would we feel comfortable doing that?

And there are other organ systems, certain brain parts, for example. It's established you can do superchiasmatic nucleus transplants in hamsters and keep them alive longer than their cohort, if you take fetal superchiasmatic nuclei. That is a kind of transplant you could conceivably do to human beings and Ben can tell us if this is over the edge. But suppose we could do that and just with a very small injection, upgrade the circadian rhythm centers of our bodies like a tuneup. Maybe that would be a good thing. But maybe on the other hand, it wouldn't. So we should at least include in our report some reference to the fact that all transplantation is not just a matter of efficiency and resources.

DR. PELLEGRINO: Rebecca?

PROF. DRESSER: I'm worried that that we're not giving the staff very much help on reaching closure. Maybe we're coming around to something we could agree on with age and I guess there's dispute over regions and geography. Quality of life is the other main factor in allocation discussed here. We haven't talked very much about it.

I don't know that much about this index so I'm not comfortable endorsing it or opposing it, but I guess I am willing to say that quality of life is sometimes appropriate to take into account in allocating organs, for example. I understand that some people in persistent vegetative state are on dialysis. I would be opposed to putting them on the list to get a kidney because of quality of life concerns. Maybe — well, advanced dementia, advanced Alzheimer's, they probably don't have a long lifespan, but someone who say has had an extremely severe stroke, I would prefer the organ go to someone who is at least somewhat conscious and functional, able to relate to other people.

So personally, I would say it's not always inappropriate to take quality of life into account. I think it's very difficult to decide when and how to do it.

DR. PELLEGRINO: Thank you, Rebecca. Anyone else?

Paul and then Dr. Eberstadt.

DR. MCHUGH: Just briefly, my problems with Dan Callahan probably do relate to the fact that he has a religious point of view, but his religion and mine are different, I suppose, so hence my visceral reaction to him. But I was trying to think again and again in relationship to what Leon and other people have said. Again, it comes back to the idea of who is going to deliver this message and in the process of trying to deliver messages to our patients, to my patients, I'm trying to deliver the message that I'm not judging the worth of them in relationship to my efforts.

I do agree that age and the life span and the innings are important things to keep in mind, but like Ben, I want to keep it in mind, not have it be fixed in rules. And then finally, there is an important thing to be said about age. There's certain kinds of things that age can be done at other ages you can't do. I remind you that we old folks depend upon the youthful military to protect us. They put their lives at stake so that we can live the kind of free life we live. And we understand that.

So various kinds of situations come up that mean that how we see what we're doing differs in relationship to the goals in front of us. So I just want to say that the more it can be seen that this problem ultimately will be resolved only when we get the resources to care for all of the needs and as I've said it several times in these meetings, xenotransplant. Dan tells me maybe it's a long way off, but it's obviously the only thing that's going to solve all these ethical problems.

DR. PELLEGRINO: Dr. Eberstadt?

DR. EBERSTADT: I wanted to ask Leon a question about fair innings. It seems to me as a concept of fair innings is very useful in clarifying thinking in this particular instance where we've got a palpable shortage, obvious rationing question.

But I'm wondering how generalizable Leon sees this. In the final analysis all medical resources are limited and is this a — do you see this as a generalizable precept for other areas of health care treatment and consideration?

DR. KASS: Well, this is not the first time this question has come up here. It was very much central to our discussions about the care of the elderly, crisis of long-term care. No one has been more eloquent in the need to attend to the unspoken foreign needs of medical and psychiatric needs of children than Janet. This has been one of her themes, really. And lots of us haven't spoken up because we've agreed with that kind of sentiment.

And the chairman's comments, too, I think, suggest this may not be unique to this area. It is an extremely difficult thing to do, not just as a practical matter because the octogenarians are in Congress, but as a cultural matter, one doesn't — because we do somehow believe, whether you put it in Gil's religious terms or not, but there is a kind of equality that comes to life and death questions and no physician standing over a bedside of a patient should be compelled to say I'm sorry, you're too old, I will sort of care for your needs as you happen to be now. But it may be more dramatic in the case of organs where the donors are clearly the young and where unlike the case of the military where you can say there is a coherent national purpose for which such sacrifice one hopes is being made, here the individual deaths of each of us or all of us collectively are not a natural disaster. They're, in fact, the condition of possibility of renewal. So, if you somehow, in this particular case it sort of strikes one as very dramatic to say we're asking somehow the young to support the old after the old have had fair innings, you could translate that in terms of taxation and other sorts of things into other areas and it might very well be, and if it's true that we're going to have to face this question and perhaps set some kind of limits, that some notion of a fair innings might be generalizable into other kinds of conversations, notwithstanding the fact it's practically a hard sell and it's got strong philosophical arguments on the other side.

DR. EBERSTADT: I'm not asking for an algorithm.

(Laughter.)

I was just wondering about consideration.

DR. KASS: It's a very welcome question so we don't simply think that we're treating some kind of unique situation here, rather we're treating a very dramatic instance of something which has generalizable equitability.

DR. PELLEGRINO: Dr. Rowley?

DR. ROWLEY: It strikes me that transplantation is something that we'd been discussing as a council off and on for a long time. And we haven't really until this point of having the staff papers to discuss sort of come to the point where we may offer the country some advice.

And I think that Carl's sort of cautious view — why has it taken us so long to come to this point? And I think it's partly because of the difficulty of the issue and the question that at least some of us have as to whether we can really advance the understanding in the country or whether we have something to say.

And I feel very uncomfortable in part of this because I think that what we have to say is related to the ethical issues. I think what we have to say is less related or I won't say related, but maybe less valuable in some of the specifics, like age and geography and some of the later chapters, particularly the one we've already discussed on market for kidneys. Because I suspect there is also a very divergent opinion.

So it seems to me that we do have to wonder about our competence to make statements in certain areas and deal with it very cautiously.

DR. PELLEGRINO: Thank you. We are at the 12 o'clock time. We'll allow one or two more very quickly, but it will cut into our lunch hour. That's not a restriction, but only a precautionary note. I think it appears that you all want to go to lunch.

DR. ROWLEY: Yes, but then there are a number of options that I thought you were wanting some input on.

DR. PELLEGRINO: Yes.

DR. ROWLEY: No, but do you really want the Council minus Mike to — and others who aren't here, including Floyd, do you want some expression of opinion or not expression of opinion?

DR. PELLEGRINO: We want as much input and as much specificity as you feel you can give us at this particular point. I think our task always is to lay out the alternatives clearly and objectively as possible. We don't make the policy, but we can certainly point the direction where policy ought to go, we think, if we have agreement.

So yes, we are interested in as much as we can say about it and feel confident about it.

Does anyone want to carry Janet's question further?

Well, I think —

PROF. SCHNEIDER: After lunch?

DR. PELLEGRINO: Excuse me?

PROF. SCHNEIDER: After lunch?

DR. PELLEGRINO: We can do it after lunch, but hold on, Leon has a comment.

DR. KASS: It seems to me that — the particular issues, in my view, are probably too complicated to say simply let's go around and have a vote on each of these particular items.

DR. PELLEGRINO: We're not planning that.

DR. KASS: It does seem that maybe procedurally what Janet is implying is — I mean you get some sense of where the people who have spoken are at least on those issues where they have spoken pointed to some recommendations. We always, I guess, have the right to dissent and write independently if there are any kind of positions taken. But perhaps you and the staff could solicit, when you sort of formulate what you take to be the recommendations of the Council, we then have an opportunity to even before that to weigh in, to give some guidance, but at that particular point to see where, in fact, we stand.

Is that —

DR. PELLEGRINO: Very definitely, Leon, that is what we had in mind by pointing to these somewhat more concentrated papers than we've had previously. And to try to focus in, so to speak, as if there are pilots focusing on the beam and trying to find the runway. And from time to time you have to waiver before you can get to the runway. And I think that's where we are at the moment.

Yes, that's what we'll try to do and submit it back to you, obviously.

To answer Janet's question, we want as much guidance as you can give us from the control tower, so to speak, as bring this plane to landing. It's a very poor analogy.

(Laughter.)

Thank you very much. Have a good lunch. Be back at 2 o'clock.

(Whereupon, at 12:05 p.m., the meeting was recessed, to reconvene at 2:00 p.m.)

SESSION 3: CARING FOR LIVING DONORS AND TRANSPLANT RECIPIENTS: FIVE POLICY PROPOSALS

DR. PELLEGRINO: Good afternoon. Good afternoon. Thank you. Thank you. I think we're ready to begin our afternoon session. Thank you very much for being so prompt.

This afternoon, we move to the question of caring for the donors and the recipients, the ethical issues and some of the other problems and policy proposals, very specific policy proposals. And we invite your comments as always.

The discussion this afternoon will be initiated by Rebecca Dresser, who was kind enough to accept our invitation and Dr. Carson, if he's here. I believe he may have left. He wasn't able to stay.

So Rebecca, it's all yours.

PROF. DRESSER: Well, I will try to shoulder all the burden here, but I hope you all help out.

These are fairly specific proposals, so my comments are generally specific. I want to flag some concerns, not necessarily with the intention of opposing the proposals, but just point to some worries.

I do have one broader allocation of resources question: Is it right to use tax dollars for benefits to donors, rather than using the funds for clinics in poor neighborhoods or other possible uses? But in the absence of a systematic approach to healthcare priority setting in this country, we make allocation decisions that may not be the most ethically defensible use of limited resources and programs that seem appealing within the limited context of organ transplantation aren't necessarily the best or the fairest way to address the broader health or other needs of the community.

And the paper certainly acknowledges this concern. But I hope that even if the Council approves these proposals as humane and sensible adjustments to the existing organ transplant situation, I hope the report will acknowledge this bigger picture and acknowledge that funds might be used for more compelling human needs.

With that said, and the paper notes, more successful kidney transplants could reduce healthcare costs related to dialysis and so in that sense might free up some more money for other programs. I'm not sure how that will actually play out. But here's some comments on the specific proposals. Unpaid leave. I don't have any strong feelings against that. I think it's fine. I wonder in practice how necessary it is. I wonder if most employers already would consider organ transplantation a reasonable basis for invoking the Family Leave Act. I don't know. I'm sure it would be okay to be explicit, as far as I'm concerned.

On the tax credit proposal, one point about that, it said only if the organ is actually removed would they get this credit and for the expenses.

In research and surrogate motherhood and egg donation, even though we might say it's hypocritical, the view is that the expenses and compensation should be covered according to the time and the procedures that are done, that is, more of a wage model, not "you ought to get paid at the end if you give up your eggs or your organs or your blood or whatever it is for research." That issue should be — the appreciation shown to you should cover the investment of time and trouble and so forth that you've put into it. And if you wait and make the compensation reimbursement contingent on completion, then you're penalizing those who have to drop out for medical reasons or other legitimate reasons. So I would wonder if it should be structured that way.

On life and disability insurance for donors who lack it, this seems morally appropriate to do something along these lines. I don't think we should be too specific about how to do it, given the limits of our expertise that some of us have talked about this morning. I question whether it would be feasible or ethical to tie eligibility to being compliant with follow-up care. I think it could be difficult and perhaps — I think it would be problematic sometimes to say well, you're not compliant enough and therefore you're not covered any more in your family. You and your family can't benefit from this and we'll abandon you. Those situations can get sticky.

Supplementary health insurance, again seems more like defensible to provide to donors who wouldn't otherwise be covered. People shouldn't have to go into bankruptcy because they can't pay the health care expenses that they've incurred because of donating. Maybe our economists can comment on this.

If the target population is low income, I'm not sure that tax credits always help a lot. I've just heard people talk about that, so that could be an issue.

Prohibiting insurance companies from treating donation or resulting complications as pre-existing conditions. That seems fair, but then why is it all right for them to treat things like naturally occurring health conditions, congenital heart defects or something or an accident-related injury as a pre-existing condition? I think there are a lot of fairness issues across the board with "pre-existing conditions," so I just have to say that.

Also, I would point out that we don't have these kinds of programs for research volunteers and their families to help when people suffer harm from study participation. This has been discussed a lot through the years, partly because of concerns about causation, that is how you tell what's the cause of the problem. But there's never been enough consensus and enough energy to create a program like that, except I believe in the VA, they have something like that.

So again, different kind of treatment for people who are allowing themselves to be put at risk for an activity to help others.

Last proposal, uncovering immunosuppressive drugs. I think this makes sense as a way to increase the benefits a transplant provides.

This proposal also challenges the requirement that the transplant is done in a Medicare-approved facility for someone to be eligible for coverage. The justification for this is that the experience centers and doctors have more success which increases the chance a recipient will benefit and that's the same justification that's offered to support extended drug coverage. So I'm not so sure I want to say get rid of that requirement. I would support a requirement that questions the centers that do the transplants without being accredited or approved by Medicare to put people in that situation. But I think the requirement itself may be a good one.

Finally, just some general observations. I think it's very important to protect the integrity of the transplant system. These policies — living donation is already a growing phenomenon. It's amazing how much it's increased just in the past couple of years, especially the stranger donations. So if these kinds of changes were to increase the number of people who feel comfortable volunteering, clinicians screening donors will be under more pressure to maintain standards.

I know some people, for example, at the Cleveland Clinic they used to, and I believe they still have a kind of a bioethics screen where people from the bioethics program, the clinical ethics program talk with the donors about what they want to do and try to assess voluntariness. This is in addition to the psychological screening. And also the recipients, about whether they'll be able to take care of themselves and handle having an organ.

And I know some people have told me they just feel so much pressure to pass the person, to say "yes, you're okay, you're good to go." And these are soft criteria they're applying. So there will be more situations like that and more challenges, I think for the screeners, the more this living donation occurs.

I also wonder about decisions about a recipient's ability to benefit from a transplant. If somebody has a friend or a family member or a stranger who is willing to donate, will physicians be more willing to say "yes, you can benefit from a transplant," than they would be if they were just listing them on the list and they were determining ability to benefit from that distant, more anonymous perspective. So I wonder about that.

I read something by Julie Inelfinger in the New England Journal on living donation, and she said that the first living donor transplant team said that organs from such donors should be used only when a triple principle on a standard of care was applied. First, the likelihood of success for the recipient is high; the risk to the donor is low; and true voluntary consent is obtained. And she mentions that even people working in the field now say this is going to be more and more challenging to maintain this triple principle as the supply of living donors increases. So that's tangential to these proposals, but I do think the intent is to make more people feel comfortable about donating and so they could increase the supply which would be a good thing, in many ways, but raise these concerns to a greater degree.

That's all I have to say.

DR. PELLEGRINO: Thank you very much, Rebecca. Before opening up the paper to discuss, let me read an announcement we've been asked to make by our audio-visual technician. The use of cell phones and/or blackberries will affect sound system and recording causing static. Thank you.

I hope you will all observe that.

Now, does anyone wish to open the discussion?

Thank you, Rebecca, for being specific and taking each of the proposals and looking at it critically.

Anyone?

Dr. Eberstadt?

DR. EBERSTADT: Rebecca, thank you very much for that kick off on this very thorough and interesting staff discussion paper.

Let me just talk very generally about these proposed recommendations. This morning, we were wrestling a little bit about the whole question about whether there should be a marketization of human parts and like it or not, these proposals all involve a move towards the economization of organ allocation process, kind of an explicit attempt to harass economic forces in a benign way towards this human and medical problem.

To the degree that they do so, this brings into question or forces us to revisit the whole question of the nature of the gift, what sort of a gift is organ transfer supposed to be, what sort of gift should it be? It raises questions about that, obviously. In a much more kind of narrow and nerdy econometric or economic way, we can say that none of these are proposals that come without economic costs, even the one which — the first one which suggests that there simply be time off from a job. That entails costs for an employer. Replacing an employee is not a costless, seamless transaction or procedure.

Four of these proposals would use economic forces to change the cost benefit calculus in such a way as to try to encourage more supply. The fifth, however, would change economic, the economic calculus in such a way as to increase demand. You might just notice we've got some proposals here which would tend to reduce the existing shortage and other proposals that would probably, all other things being equal, and tend to increase or intensify the existing shortage.

DR. ROWLEY: Mike, could you give examples of the latter?

DR. EBERSTADT: If the costs of being a recipient are reduced, that's probably going to increase the demand for being a recipient.

DR. ROWLEY: Fair enough. I understand that, but you also had the converse, it seemed to me which is the costs will make things worse. You're saying that it's because there's potentially going to be more recipients, the list will get worse or longer?

DR. EBERSTADT: All I was suggesting is if you do things which, all other things being equal, increase the supply, shortage can be expected or guessed to mitigate; if you do things which all other things being equal, increase demand, an existing gap can be expected to increase in size. That's all.

DR. PELLEGRINO: Other comments? Leon?

DR. KASS: I'm — this is a thought from the middle of the stream. First, in part, to — something which Nick said at the opening, these are — at least four of these are meant to remove the impediments from the likelihood of donation and while there are financial considerations here, they could either be said to be some kind of — not quite a reward, but a removal of the penalty for a gift, rather than simply an outright compensation which would turn the gift into a product or a good exchange.

I mean there are fees for services. There are rewards for gifts and then there are payments for goods or products and this — while some of these things might produce the kind of incentives that begin to look, or would at least require the change in the law as the writing points out, I don't think that necessarily this is part of a slippery slope towards the full economic commoditization of this business. That may or may not — as an empirical matter be true, but it seems to be a philosophical matter where one could defend these distinctions.

I don't know — we start really with this organ business and Rebecca alluded to the fact that here we're asked to take this matter up, extract it from other forms of medical expense and for other kinds of needy matters. That's unavoidably the way things come to us. It's certainly the way the legislation gets introduced and you're either for it or against it or you have something to offer. But one can't help but think as one reads this about why one would single out these particular uses, particularly of tax money, to put behind this particular set of removal of disincentives, rather than other areas?

You could make the argument that you're doing this because we think, as the 1984 law seems to suggest, that the nation as a whole has an interest in the success of transplantation. But this has been singled out for special attention as a public health matter of national importance. I'm not sure if one had to revisit that that one would argue for it or one would argue for singling out dialysis as the one kind of entitlement. That's where we are. That's gone.

But the other argument for doing this would be to say look, in purely economic terms, this is a matter — this is the way of saving money for the health care system which if every transplant is that much saving over chronic dialysis and that much provision for comprehensive drug coverage for immuno-suppressants, pays for itself if the people actually stay on it. So I can see that. And maybe that should be enough for me, but as a moral argument, and some of the moral arguments that are made here, curiously enough, it's the practical arguments that are more likely to sway me here than the moral ones, especially when I wonder about what is sort of selective about this area that we should be somehow singling it out for an infusion of federal funds, federal tax credits and the like. And that's just I think a puzzlement for me. I don't — I can only state the difficulty.

Reading each one of these things in the abstract from everything else, okay, this is reasonable, or I'm not sure that we have to provide advance insurance for everybody who wants to take this kind of a risk. Being an organ donor is a risky thing. The risk might be very small, but I'm not sure you have to ensure somebody who is going to go through this thing that if something happens with their care, certain moral principles have said it's morally irresponsible to allow someone to do this, if they don't have health insurance — I am not sure it's morally irresponsible. Somebody might elect that kind of choice, to give an organ to loved one even if they don't have health insurance. I sort of have trouble putting this together in the larger kind of context which we've for the moment bracketed. I'm sorry.

DR. PELLEGRINO: Gil and Peter.

PROF. MEILAENDER: One of the problems that I have thinking about this is related to some problems we had this morning in the sense that about some of these things you're just not quite sure. You know there are some considerations that might tend one way and other considerations that might tend another.

If you bracket the fifth proposal which is a little different here, and you think about just the first four, they're all intended... they're increasing steps intended to encourage or maybe — encourage or help people be generous, something like that is the way they're couched.

And one of the things that I just can't quite make up my mind about here is if these steps were intended to encourage people to be generous with respect to donating to relatives, say or something like that, I have one sort of reaction to it. But these steps are intended to encourage people just to sort of donate to strangers, kind of. I have a somewhat different reaction to it, but I presume that these steps would be, enacted this way would be intended to encourage just anybody and everybody to donate. And that's where I begin to have problems. I'd be more inclined to favor it in a more restricted way, but I don't know if the law could restrict it. I sort of in my own mind split the difference when I said well, the first couple seem okay and the three and four I'm not so inclined to. I don't think there's any great philosophical justification for splitting the difference in that way other than I have this sort of reservation about just encouraging the kind of generosity that just thinks of one's body to be donated to anybody and everybody. And yet that is the kind of encouragement that's at work here. So there's a puzzlement there that I can't quite get through.

DR. PELLEGRINO: Peter?

DR. LAWLER: If there is a moral imperative here and I agree it's quite questionable is that we should do everything we should do short of organ markets, if we're not going to be for organ markets. So we're in favor of doing everything we can do to increase the supply of kidneys given that organ markets we conclude is a cure worse than the disease or the prices.

You can't say about the generosity that the generosity involved here is giving up the kidney which is pretty generous, all things considered. So you wouldn't want to add to the generosity of giving up a kidney, financial generosity, given that some people are much more able to bear financial generosity than others. So understood as a theory, the tax credit, the leave and all of that would allow everyone to be generous in this sort of way and not only those who can easily leave their jobs and those who are fairly well-heeled and for whom the cost is no big deal.

So I agree that it seems perverse as a method of encouraging generosity to strangers and donating live kidneys in a kind of undirected sort of way, but whether it's directed or undirected, as Gil points out, you can write the law to make that distinction and I'm not sure it's so bad to tell people that we appreciate your generosity, we're okay with your generosity and so we don't want to add to your bodily generosity, so to speak, financial generosity which in the nature of thing would be unequal — none of this stuff is required for rich donors, but if you're poor and generous, you might have to have some of this just simply to be able to do it. You can't allow your generosity to ruin you.

So the tax credit and the leave seem the most benign ones to be — the insurance seems more problematic because I would like to see more detail about how much this would actually cost and all that and then I agree with Gil, the number five is just an immuno-suppressant drug coverage. It's just a question of prudence or practicality. We get more bang for the kidney if we have that and we'll save the Government money. I don't think there is a deep moral point for that one actually.

DR. PELLEGRINO: Thank you.

Yes?

DR. GÓMEZ-LOBO: In a way, I was very much impressed with Janet's last remarks this morning and I think that's a very important point. It actually relates to what we're discussing now.

My first reaction when trying to make up my mind on these five proposals was how much do they cost? In other words, given the important notion of opportunity costs, I mean what would be detracting monies from if these proposals were endorsed. And it seems to me that the reply is we don't know how much they would cost. I don't know if they can tell us if there is any likelihood that people could calculate these costs one way or the other?

DR. PELLEGRINO: In principle, sure, you could come up with estimated costs on all of these.

DR. GÓMEZ-LOBO: On all of these, okay. Well, and then the question is until we have those estimated costs, what should we, as a Council, recommend which comes back to the lack of empirical knowledge of some of these issues.

Now my own sense of that would be that any set of recommendations coming from the Council would have to be formulated in very general normative terms so that say if there's a morally compelling case for say doing away with considerations of geography, now I'm not quite sure. I heard some very important arguments this morning, that it should be really a recommendation for UNOS and assuming that they are the people that are socially committed to having as much as one can know about this.

So basically what I'm trying to suggest is we have two routes. One would be to go all full speed into an absorption of the empirical data, but I don't think we have the strength for that. Or the other one would be to frame it, to try to identify the moral issues in such a way that the recommendations would be recommendations to another institution which would have to try to match their decisions to those norms, but under the important restrictions of costs and practicability.

DR. PELLEGRINO: Thank you. Dr. Rowley?

DR. ROWLEY: Well, this isn't — I was just going to ask a matter of education, but following up on what Alfonso said, and partly what I said this morning, it seems to me that the one dimension that we can add to this discussion, the national discussion is looking at the alternatives and if you will, not so much passing judgment, but just making some observations on the moral and ethical framework in which these are discussed.

So for instance, in this chapter, rather than coming down in favor of any one of the five, we could say that we've considered them and that the ethical issues that have to be included in a final decision are things that we have discussed and things that are written in the paper. Now that's a cop out in one way, but I think you can also argue that it's being honest in that there are a number of issues that we really don't have the competence or the basis to come to a judgment.

What I really wanted to do was have somebody explain to me, various bills have been introduced into the House of Representatives and I understand that many bills are introduced and nothing happens to them. Can somebody just explain to me why these bills apparently went nowhere? What are the arguments in Congress or was it just lack of anybody pushing them that they just were not forwarded for a vote?

DR. PELLEGRINO: Anyone wish to respond to that question?

DR. CROWE: This will be very brief, Dr. Rowley. I think most of these bills went to specific committees that we're going to be dealing with them and at that point it's a political debate. So the Committee can say yes, we'll talk about this later and not get to it. I don't think that, except for one section that went to the floor of the House or something like that where they actually had real discussion or in the Senate.

DR. KASS: Were there hearings on any of these, do you know?

DR. CROWE: Not the ones that we're looking at in this session. The later session there seems to be more interest in paired donation and that was raised again in this Congress.

DR. FOSTER:I want to ask Nick a question because I don't know much about economics, but there was a very interesting series after Christmas about retailers and gifts at Christmas. It's a huge amount of gifts and how they have changed their mind now that most people really don't want gifts. They don't fit. They don't do everything else and so they're now changing their view that what you're going to give is money. You're going to give a card worth $50 to a hardware store or so forth. In other words, in the end only money counts, not markers for money or not excuses not to give money, but money.

And so first place, I want to ask if that's — if you think that's a — I just read it in The New York Times. I mean do you think that's a fair statement and then I want to — I'll make a comment here.

DR. EBERSTADT: You can always do more with the gift that has the Franklin on it than the gift card to the store or other things. There are more options there.

DR. FOSTER:Okay. It seems to me — this seems to be part of the idea of trying to increase the supply of organs which we're going to discuss at the next session. And the most important thing will be on the issue of a marketed system which is there. If you're going to be serious about doing this, then to me, instead of saying well, I'll give you a life insurance policy and I don't know how much that's going to cost us, but the 20-year-old donor and so forth like that, that you shouldn't include this in the cost of living transplants. That is to say, that you're going to give the donor a large enough amount of money for the organ to be given that it would comprehend any possible hospital costs and so forth of that sort. You're not going to do that for a thousand dollars, but you probably could do it for — I don't know, kidneys are probably $60,000 or $70,000, there are different places. But for $25,000 — you know.

So it seems to me that in one sense, this whole chapter is a way to avoid the appearance of paying for organs but at the same time to give some sort of indirect monetary component for the giving. It looks like to me that this really is a substitute for — because then we don't lose the human dignity or anything else because we don't have cash, it seems to me.

DR. PELLEGRINO: Dr. George.

PROF. GEORGE:Well, I am really inclined to just say Nick, what's the answer to that? Because that's really my question as well. I'm wondering, Nick, if any rigor can be put into the distinction between removing — what would the word be? Side disincentives? Yes, side disincentives to generosity and paying somebody for the widget or whatever it is; in this case, organs. Is that just a shaky, soft fluffy distinction or can any rigor be put into that?

I have another comment after this, but I wonder if Nick could just reply.

DR. EBERSTADT: I think that if a Nobel Laureate like Gary Becker were here, which I'm decidedly not, he would have said that Dr. Foster has just cut to the chase. And that — someone like Gary Becker from his blogs and from other writings would say that this is exactly the question. Why mimic the workings of a market when you can have the real deal there? That would be — I think that would be Gary's argument there.

As far as attempting to estimate the impact, is that what you're wondering about, how well could one guess about the impact of these prospective sorts of measures without actually enacting them from other sorts of experimental —

PROF. GEORGE:Well, let me try again, It's just kind of a flat-footed question. Is there a rigorous distinction, can any rigor be put into distinction between eliminating, using financial considerations to eliminate disincentives for giving, that's (a); and (b), authorizing the sale of organ like another product?

Intuitively, just sort of at the surface level, it sounds like a viable distinction. But I gathered from what you said and what Leon responded to that you were suggesting maybe that's not a viable — it's a very fuzzy distinction.

DR. EBERSTADT: We certainly have a great deal of empirical data about how financial donations, not more personal donations, but how financial donations are affected by changes in the tax code and changes in other sorts of incentives and disincentives. I think people can talk very confidently about that.

The work that has been done to date on hypothesizing about an organ market as I think we discussed in some earlier sessions has to be pretty hypothetical and makes use of guesses or if you want to dignify the phrase a little more, bounded hypotheses about what sorts of elasticities or responses, different types of incentives would receive. And that's the sort of hypothesis that we've seen in the economic literature on this so far.

So within a surmised range, I guess is what you'd say.

PROF. GEORGE:Could we explore a little bit the considerations that Peter was putting on the table to give an organ, just in a pure donation system, to give an organ comes with some costs attached. Some people would be able to afford those costs more easily than other people will be able to afford them.

If we took steps simply to put people who can't afford them into the position of those who can, would we simply be sliding into organ donation? I'm sorry, organ commodification, into treating it as a product with a price, monetizing it?

DR. EBERSTADT: My first reaction would be to suggest that we'd be moving closer to that. We wouldn't be monetizing it, obviously because there wouldn't be a market in organs.

What we'd also find, I think as Peter indicated, is that for any given sort of credit or bonus, we'd have a sort of a regressive response. People who are better off would be less incentivized than people who are less well off, like any other sort of bonus or standard sort of bounty.

So there would be a certain sort of regressive impact that one might also expect.

PROF. GEORGE:And if I could just make a comment on a different subject. I just wanted to reinforce what Janet said. I thought it was a very persuasive point, especially building on what Peter had said earlier.

It seems to me just as a general matter that where a judgment of prudence is controlling a decision or even a judgment of preferences, about say, how we're going to spend money, is controlling a decision about a policy where you're prioritizing goals, for example, for the purpose of deciding how to allocate the public resources that are available.

I don't know that it is our Council's role to do that, or whether we ought to be doing that at all, and it seems to me that's because our judgment in that area really won't be a bioethical judgment. It's not a judgment about ethics at all. It's the kind of prudential judgment that we pay elected representatives to make, but not necessarily on the basis of ethical or bioethical concerns.

Now having said that, once a policy proposal goes on the table, we vote it up or down, but one could be voting a particular proposal down for two reasons. One, one is opposed to the proposal. Two, one isn't necessarily opposed to the proposal, but doesn't think that this body ought to be making a recommendation.

So I think that it might be with some of these proposals that if this Council decides that we don't want to endorse the proposals, we should make clear or those of us for whom the question is a jurisdictional one, as it were, should make clear in casting the vote that we're not saying to Congress, don't do this, it's a bad idea.

DR. PELLEGRINO: Professor Schneider.

PROF. SCHNEIDER: I'd like briefly to continue that line of inquiry by suggesting that it's a sobering thing to go back and look at the kinds of recommendations that predecessors of ours have made; recommendations that are old enough to have been put into policy and contested. And I think that in the areas of bioethics that I know anything about, the record is humiliatingly bad, that people were able to make recommendations that they thought were based primarily in their moral understandings and that seemed so plainly right and good that no decent thinking person could object to them. And that's how we've gotten things like the Patient Self-determination Act, for example, which requires institutions to tell their patients about the existence of advance directives.

We have had recommendations for Living Wills, ideas about informed consent for research subjects and for patients. And when you look at the empirical record that evaluates all of these sorts of things, the expectations that groups like ours had for them have been almost systematically defeated.

And that's partly because the groups making the recommendations just didn't understand what the empirical reality was, which was always much more complicated than anybody expected. It's also because the moral arguments are always much more complicated than a group like this could deal with, particularly because we tend to fixate on the moral argument that seems most important to us, forgetting what we actually know which is that all moral arguments compete with other important kinds of moral arguments. It's extremely difficult to anticipate how that kind of conflict actually works itself out in real life.

Now the trouble with what I'm saying is that it's very discouraging for a group like this that feels assigned to go out and make recommendations about public policy. But I worry, on the other hand, that we've now launched ourselves into a project of giving the country advice about transplantation, and we feel obliged to say something, and I think that that is an impulse that should be resisted, if in fact, we can't say anything that's reliably useful and at least better than groups like ours have done in the past.

DR. PELLEGRINO: Rebecca?

PROF. DRESSER: I think it's more complicated than that for some things. For example, the Patient Self-determination Act. I don't know how much the passage of that had to do with people in bioethics. That was a very popular proposal in Congress. And some of these other things we're talking about are proposals in Congress, so that will be perhaps voted up or down or reintroduced and reintroduced.

And so do we have a role in commenting on proposals that Congress is considering, is there any light we could shed on what they're thinking? Or do we have — should we just stand back and let them make all these decisions without our considered advice? We probably think that would be better.

I mean we have various policy making groups. I mean who knows if this is going to go forward with some of these things or not. Do we have a role in weighing in or should we just raise issues and say these are various considerations or should we stay out? I guess that's a question for us.

DR. PELLEGRINO: Gil? I'm sorry, go ahead, Gil.

PROF. MEILAENDER: This follows up sort on Carl's question, but then takes it back to the issue that Dan had raised and that Robbie was pursuing. There would be a couple of ways to think about these proposals here. One is just as proposals on which we might weigh in and offer advice and that's where your concern about — especially whether we have anything useful or knowledgeable to say needs to be taken seriously.

They do also, just taken as a package, raise the more general consideration which is what Dan had started pushing and then Robbie was trying to formulate about whether there is actually some kind of serious difference between simply removing disincentives which is how these are packaged, kind of, and on the other hand offering financial incentives which unless you're prepared to go whole hog, we don't want to do. So in other words, can one reasonably make that distinction.

Now I don't know, but at least I want to take a crack at formulating what it seems to me you were pushing, Robbie. If you remove a disincentive and I then give an organ, donate one, then I'm not any better off than I would have been if I hadn't given the organ.

If you provide me an incentive and that gets me to donate the organ, then at least in principle, I may be better off than I would have been had I not.

I think that there's some sense to that distinction although you may be able to destroy it. But insofar as it is, there's the specific question about each of these five things, is it a good idea or is it not a good idea. There's also the more general question, if whoever had responsibility for redesigning the system or tinkering with the system, wished to remove financial disincentives or various kinds of disincentives, mostly financial in these sorts of ways, would that amount to the same thing as offering financial incentives. That's the sort of question that we could answer even if we didn't think we had the empirical evidence to respond to these, maybe.

DR. PELLEGRINO: I have Leon and I have Diana. Is it on this point, Diane?

Okay, do you mind, Leon, hold on a second?

Diane?

PROF. SCHAUB: I guess it seems obvious to me that there's a difference between making money on an activity and not losing money on an activity. If your mom wants you home for Christmas because she wants you to share the gift of your presence, and you're a poor graduate student and she says she'll buy the plane ticket, that's removing a disincentive. It seems to me completely different from —

PROF. GEORGE:I'll buy you a car if you come home.

PROF. SCHAUB: Well, no. The plane ticket all you get to share is your presence, right?

PROF. GEORGE:You're saying it's different from saying —

PROF. SCHAUB: Yes, it's not a bribe to come home, it's just removing the financial disincentive.

DR. PELLEGRINO: Leon.

DR. KASS: This is partly to Gil and to Peter and partly an invitation to get something less depressing from Carl.

(Laughter.)

PROF. SCHNEIDER: Good luck.

DR. KASS: It's true that we have talked about these proposals as removing at least four of them, of removing disincentives to donate and maybe it's true, Peter that these are proposals that are eagerly embraced by people who don't yet or may never want to embrace the markets and Dan might be right that to the extent to which these are baby steps in that direction and they're not really going to make the difference, why don't we have the fight over the other.

But I note that the title for this section is care for living donors and transplant recipients which isn't simply exhausted by whether or not there are going to be incentives, disincentives, but what is it that we as a community that have chosen for better or worse to encourage this activity owe to those people who are sufficiently generous to put themselves at risk and do we have some kind of obligation, (a) that they not as a result of this, wind up being penalized or at health risk without some kind of support, etcetera.

Some of these [are] more like removing disincentives. Some of them look really much more like making sure we care for these people. And similarly, if you're going to do a transplant, but you're not going to pay for that which would make the transplant efficacious, are we behaving properly, having these people. It seems to me those can be taken up as questions about obligations to donors and recipients, even if they don't affect their incentive. Even if they don't affect the decision to give. That's part of this.

I wouldn't dissent from your overall judgment on recommendations of previous Councils or of this Council. You can't blame this Council for doing terrible things because no one has paid our recommendations any attention whatsoever, at least not yet. So we don't have to do penance, at least on that score.

But when there are people offering various kinds of proposals, along these lines, without necessarily embracing this one or that, where we lack the empirical knowledge or we don't give perhaps sufficient weight to the competing world principles, is there not something useful here to be done as these particular proposals have been grouped?

Let me put it more pointedly. Here is staff working paper three on this particular heading. If it were up to you, would the discussion of these things simply not appear in the report, what we say on the one hand this, on the other hand that? And on the fourth and third hand, we don't even know what to say? What's the — having taken your caution, what's the practical upshot with respect to the materials that are now here? Other people are making these recommendations.

We might not be able to make a judgment as to whether we can afford them. We might not get to the bottom of all of the moral arguments, but are we even suitably chasten to be sort of impotent to say anything at all about this or what? What's your recommendation?

PROF. SCHNEIDER: Well, I get to respond. Well, first, I very carefully phrased what I said to exclude any product of this commission or council so far because we haven't lived long enough to see how its proposals work out and what effect they have, and in fact, one of the things, it seems to me, possibly to distinguish the product of this counsel from its predecessors is the high intellectual quality of the work that's been done in the reports.

Whether that makes them better proposals remains to be seen.

One of the things that strikes me, as I listen particularly to you talking about our choices is that we repeatedly discovered that we're working against a highly irrational background and, particularly in the way that the American health care system works, particularly the highly irrational and morally deplorable fact that we let 42-some million people not have insurance. If you had a systematic insurance program, a lot of the problems that we're talking about in this particular part of the document would go away.

I must say that the particular proposals in this particular section appeal to me a great deal as a matter of intuition, but I think that we're acting in a very uncertain situation in which we have very uncertain competence, and left to my own devices I would say that this has been an interesting discussion, but I'm not sure that we are really ready to give the country advice on this particular topic and that there are other topics where we could be more useful.

DR. PELLEGRINO: Dr. Hurlbut.

DR. HURLBUT: Leon introduced the question of whether this is all motivated, at least part motivated, by the previous policy decisions concerning kidney transplants and dialysis and so forth.

So one thing I'd like to be clear about, what are we talking about here? Just kidneys right now, or are we talking about all sorts of transplants, in which case where will be draw the boundaries between a kidney transplant and, say, the hypothetical wound transplant. We've got to be careful not to establish policies that will edge over into things we don't consider direct and immediate lifesaving procedures.

But with regard to kidney transplants, for a range of reasons, all the way from personal to economic reasons, I think that some of the suggestions in here seem good to me. They don't seem like valuable consideration to me.

I think some kind of catastrophe coverage, maybe even something that was like life insurance if you did die, giving a life saving organ, and something that would cover immediate sequelae, even long term if there was really a disaster.

That seems pretty reasonable to me. I think the other forms of compensation are also important, and it strikes me that in some cases the very donors are going to be from families where there's already an economic burden because of the illness of the family member, and it seems compassionate to extend these concerns, specially if it's good economic policy for a country. You know, it's that extra thing that makes the gift possible.

But I think there are a couple of things missing in this equation. I think we owe it to our society not to just pass this off with a low grade statistic about, well, there's this percent mortality and immediate morbidity. I think we should also call for long-term studies to see what the consequences of donation really are because you don't have two kidneys for no reason at all. You have two kidneys perhaps because in a natural environment there's a lot of infections and people lost kidney function progressively.

And it's true with antibiotics we may have prevented that. It may be one of the reasons why we're living so long. Is it absolutely clear, Dan? Is it absolutely clear you have equal function with one kidney long term?

DR. FOSTER:Pretty close any way you can measure. Even the mass is the same of what the kidneys were from the MR size and so forth. As far as I know, there's no difference that it does.

And I don't know if anybody knows why you have two. If you're going to try, if evolution was trying or whatever, if the design or whatever you want to use was going to make two organs, you probably would make two hearts instead of two kidneys. I mean, kidneys are —

(Laughter.)

DR. FOSTER:So maybe the designer made a mistake. I don't know, but —

DR. HURLBUT: Then you could really give away your heart at no cost.

But I do think it's worth keeping our eye on it, and I think we should make some small reference to that.

I also think that since there are places where there are laws already that allow this kind of compensation we should find out if there have been any studies to the effect of those laws. Have they, in fact, increased donation? Are there, in fact, feelings within the community about those laws and have they been dealt with as though they were some kind of valuable consideration?

Also, I think it would be interesting if somebody would do — and maybe they've already done this — long-term studies on the feeling among donors and maybe even recipients about this procedure. Has anybody studied to see whether donors have donor regret later on?

Because one of the things we're doing here is we're making it a lot easier to give, or hopefully a lot easier to give, but I think — I'll say this in the next section as well — I think we have to be very careful not to put pressure on people and also not to make it just seem —I don't know. It's funny. It's such a strange area — careful not to edge this over into being too much expected somehow, sort of the expected thing to do.

I think it should remain as a — I personally think that the donor quality of this is a very important part of this to make it moral, and I'll say more about that, but I think we have to be very, very careful not to put it into a situation where people can say, "Hey, look. There's no down side."

If you'll notice, if we take away every excuse to say no, you put another — I don't know.

DR. FOSTER:I just want to make a general statement. Carl, I was a little surprised about some of the things that you said, that all of these things have been disasters, including... IRBs. I think without the Belmont report and so forth, I mean, we would have an entirely different world.

Now, the IRBs don't function well. Everybody knows that right now, but without them, I mean, I think that generalization is a poor one, and I'm not sure that despite all we've heard here about IRBs, and I know you talk about that, too, I mean, I don't think all of those things are as disastrous as you have said.

I think they came along and things changed and we find out that we've done it less well. So I would not be nearly so pessimistic.

And the second thing I want to say is that it has sometimes been said, almost in a pejorative fashion, that this Council doesn't live in the real world in the sense that we have our own lives. Most people on the Council have been pretty distinguished and I would say that it would be a tremendous advantage to have wiser people who have studied and looked at things and have the time to sit and discuss, that no Congressman in the world is going to have time to do. And even if we make some general mistakes, and I agree with Leon; I don't think anybody — I told Mr. Brown who was listening in on writing a thing about the Council here that 99 and 99.99 percent of the people in the United States have never heard of this Council, you know.

But to me, I would take pride in the fact that you have wise people who are bringing up these things. Instead of saying, "Well, let's don't say anything because we don't know what's going on in terms of economics and so forth and so on."

So I've learned an enormous amount about myself from colleagues even when I disagree with what they say here. And if we're not going to say anything, then we've spent months and months talking about a subject that has been before us and everybody said, "Well, let's go ahead to do something."

And so I'm not too much in agreement with that assessment, regardless of how this comes out.

And the last thing I would say is that even when you have wise bodies discussing this subject, if you ask me to make a choice intellectually on what we have done here compared to what the IOM reported in that document, which was so bland that you could see nothing in it, I would take, even if we didn't edit it, what we've talked, just the transcripts here compared to the IOM report on transplantation.

And I'm a member of the IOM and I respect them and all of that sort of stuff, but to me they just punted on everything.

I'm probably speaking more forcefully than I should, but you get the point anyway.

PROF. SCHNEIDER: This is not a place where I can give you the kinds of evidence that seem to me to be quite important to take into account when you're evaluating things like the work of IRBs and trying to figure out what the world would have been like without IRBs, for example.

DR. FOSTER:Excuse me. I mean, I just want to be sure. You think it would be better off without IRBs?

PROF. SCHNEIDER: I didn't say that, although I am working on an article that sees what happens if you make the case that the world would be better off without IRBs on a cost-benefit analysis, considering how much they cost and considering the fact that even before IRBs there were lots of ways in which the kinds of research that was done was controlled.

Sidney Helprin has just written an interesting book on what the world was like before IRBs, and it's, I think, not a bad starting place for thinking about those sorts of things.

I also think that it's difficult for a group like this to try to think very freshly and interestingly about these sorts of problems because the context has already been so well developed.

I'd be interested, for example, in suggesting that it would be nice if the federal government stopped trying to regulate this and let states experiment with it in a Brandeisian sort of way. It might be interesting to see what would happen if you had a state that was willing to run some of these experiments all by itself so that the rest of us didn't have to follow and see what kinds of consequences flowed from that.

PROF. MEILAENDER: I've been thinking about just sort of where this conversation has gone, and I just jotted these down.

It just seems to me as if there are at least the following four things that we probably mostly agree on. Now, as soon as I say it, somebody will dissent. I understand, but different people have said these things, but let me just try it anyway.

It seems to me that we probably all agree with what Bill Hurlbut said before, that more long-term knowledge of effects on donors would be good and would help us make wise decisions in the future, and that, you know, we should try to get that knowledge.

We probably all agree — this is to pick up sort of on the way Leon formulated things a little while ago, and I mean, I think it may be wise to put this statement hypothetically — that if we are going to continue to be a society that encourages people to be generous in this particular way, donating organs, then we probably owe them certain kinds of concern or care.

So that if we're going to do that, then it follows that we owe them certain kinds of care, and proposals at least one through four here are examples of the kinds of care that some people at least have argued we might owe those whom we ourselves have encouraged to be generous.

And the third thing is if someone then wished seriously to propose one through four, and maybe we're not the people quite to do that, you would have to cost them out in a way. You'd have to actually prudently figure out what's involved and what kind of a commitment you're actually asking someone to make.

I mean, all you know up until now, in terms of my second point, is that if we're going to encourage people, then we ought to try to care for them. We obviously can't do everything we could, and so we'd have to know what we were proposing.

And then the fourth thing that I think maybe we'd agree on was sort of what I tried before, that if any of these first four proposals were affordable and cost-effective, then simply caring for potential donors in these ways by removing impediments that might keep them from donating would not amount to offering them compensation or financial incentives.

Now, again, that doesn't recommend exactly any one through four. It just says that if folks who worked out the thing thought that these were effective ways of caring for donors, they would not, in a sense, have transgressed the line that separates removing impediments from offering compensation.

I have a hunch that we more or less agree on those four things. Now, that doesn't make a report, but it seems to me it makes at least part of what one might say under this section of the report.

DR. PELLEGRINO: Professor George.

PROF. GEORGE:Abstracting from the particular proposals that we have before us, I think it's important to remember that there are three different conceptions and not just two of how we might approach this, how we might conceive our own role.

One would be one I gather that Carl is advocating, to say, "Well, look. There's not a very strong likelihood that we can make a useful contribution here. The best thing to do would be to say that this has been an interesting discussion and not say much in the way of policy recommendations, especially in view of past experience with these councils and so forth."

The other would be to conceive ourselves as a kind of blue ribbon commission. Sometimes executives or legislative bodies appoint blue ribbon commissions and say, "We don't have time to deliberate about all of the details of a problem and possible solutions. Therefore, we want to get a group of distinguished people together with various types of expertise and then they should propose to use solution to the problem, how to win the war in Iraq, how to get out of Iraq, or how to solve the problem of having 40 million people without health insurance," or something like that.

Their brief and their charge is a general one. Solve this problem.

The third, that I just don't want to be overlooked is what I gather, what I took from — Janet can say whether I did it rightly or wrongly — I took from Janet's comment, which is a more modest one, but not one that goes down Carl's suggested path of really not saying anything, and that is to pick out the specifically ethical aspects of the various possible proposals and the aspects of the problem on which ethical considerations bear and do try to say as much as we can about those.

But once we've shaded off into problems that are of a prudential nature where ethical norms and judgments don't really control them, well, then we just step away and we don't try to solve the whole problem. We don't try to function like the Baker Commission on Iraq.

And for what it's worth, my own preference here would be to go in Janet's direction, where I take Janet's direction to be that third way.

Have I got you right?

DR. ROWLEY: Yes.

DR. PELLEGRINO: Paul.

DR. MCHUGH: I've found this conversation very interesting, but I very much like the staff's report because it fitted into the things that we said at the beginning really of today, that at any rate we could all perhaps agree that this was a gift, and if we begin, we're talking about gift giving and not selling. Then the principles of how to manage it are very familiar to me and perhaps familiar to many of you in university life where we're working with people and trying to encourage gift giving.

And there are three things that go into it, and they've all been mentioned here in one way or another, but there are only three, and they're encompassed also in this report.

The first one is you want to remove disincentives to making the gift. Okay? The various formats that people give now so that they hold the money until they die and various kinds of things, removing those incentives so that they don't feel poor at the moment.

Secondly, you care for them during the giving process. You care for them. You show them around the campus. You introduce them to Dan Foster, and you show the wonderful work that he's doing, and in the process, as well, you make it easy for them during the gifting.

And then third thing you do afterwards is you steward the gift. You make sure that you remind them of what they've achieved. You show them the new and wonderful work that Dan is doing and things of that sort.

And similarly here. We are removing disincentives of the money. We show care through the process, and we steward the gift by providing the medications and other kinds of things to maintain the organ in place, and that's why if we begin with the principle that this is giving, then these aspects at least in this thing seem to fall right into place for me.

You might imagine some other things that would attach to those three things, but disincentives, caring, and stewardship are the three things that are in this report.

DR. PELLEGRINO: Thank you.

Dr. Gazzaniga.

DR. GAZZANIGA:Well, I probably should have another dinner party before I —

(Laughter.)

DR. GAZZANIGA:— roll out these ideas, but you know, just roll the camera back here a little bit here to the first session on this when we had two strong personalities in an unforgettable exchange about the problems, the problems stated, the great shortage of organs, and then lickety-split we went into possible solutions which was the markets with a person who did not elicit neutral reactions in anybody, and a surgeon who dealt with the matter in a certain way.

And let's imagine now something else happened at that meeting, that Ben Carson was the surgeon who hates blood and who has ideas about how to generate organs. Let's imagine, actually Paul presented the free market idea. He somehow believed that for whatever reasons and has his personality of understanding; he feels your pain, a little vulnerability thing going.

It seems to me then we would all — if those had been the original presenters and there was a sense of the problem and a sense of possible, "How do we get to the solution?" we would have carried out in the intervening time maybe some empirical work, some investigatory work, look at this community, hospital ideas, is it practical, is it impractical, and said it seems to me that basically what we've fallen into here is a document that has been one way or the other a UNOS document of ways of continuing the system and not really confronting the market, and we ran away from it.

And we're going to have this at the last session today when we're all tired and, "Oh, no, forget the market. Let's go have a drink."

(Laughter.)

DR. GAZZANIGA:So all of this leaves in my mind, picking up on Carl's pessimism, that maybe what we ought to do, my suggestion would be to table it and to maybe have a subcommittee look at some of these things in a more — we have new staff, I understand — in a more methodologically aggressive way. Look up information; look at cross-cultural information that seems to me to be very relevant here, and so forth and so on; and become better informed.

I remember Carl's comment from the last meeting. There was a wonderful phrase he used, "where we have glancing knowledge," and it has bothered me ever since he said that because I wonder how many things I only have glancing knowledge of.

(Laughter.)

DR. GAZZANIGA:But I have a sense from what's being said by many people here that we're not prepared to really vote on these matters or take a position. So that would suggest maybe more study, and that is how a lot, as you know, science progresses and how information is gained.

DR. PELLEGRINO: Thank you.

Dr. Eberstadt.

DR. EBERSTADT: I donts know if this will be taken as a friendly amendment or an unfriendly complication, but let me throw it out anyhow.

As immediate and relevant as the proposals before us right now are, it seems to me that we might look back 10 or 15 years from now at any sort of discussion of these particular proposals as remarkably quaint because technology and markets are moving very rapidly and very rapidly beyond this particular set of discussions.

And with both markets and technology moving very rapidly, the whole question about the marketization of human parts and, as mentioned this morning, not just necessarily the permanent sale, but maybe the temporary rental of things, not permanent assignations may not seem so fanciful in a number of years.

So the real deal here, I think, is the question about market forces and markets and how to recognize and how to deal with market forces.

And my impression is, I may be quite wrong, but I'm not sure that we have any consensus on the Council about this, and as an additional sort of model to the ones that Robby was raising, I suppose you'd say that there's the kind of the Oxbridge Common Room or the court of law sort of template, which is to say you put up the strongest possible case that you can for a couple of different perspectives that are contending perspectives, and you hope that you do a public service by bringing different contending perspectives to the fore and letting an informed public learn and make their own decisions from them. That would be another way of approaching this.

DR. PELLEGRINO: I think we've gone over the time for this session. We will have a break until 3:40.

(Whereupon, the foregoing matter went off the record at 3:23 p.m. and went back on the record at 3:35 p.m.)

SESSION 4: INCREASING THE SUPPLY OF HUMAN ORGANS: THREE POLICY PROPOSALS

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.)

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