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Session 3: Organ Transplantation and Procurement—The Ethical Challenges

Presentation and discussion of the staff working paper by Council senior research consultant Eric Cohen and the essay by Council member Gilbert Meilaender


CHAIRMAN PELLEGRINO:  I think we're ready to go.  For those of you who have been good enough to come on time, we will start as close to on-time as possible.  We're still a little bit late.  Can I have some quiet in the back of the room please.  Thank you very much.  I'm glad my voice is carrying there.  Thanks for the power.

This afternoon, we're going to have a discussion of two papers which are in the procedure book.  We'll start by having one member of the Council, our newest member, Professor Schneider, open up the discussion of both of these papers and then we'll spend the rest of the time with the Council making comments or queries as they see fit.  Professor Schneider.

PROFESSOR SCHNEIDER:  Thank you.  I was just looking around.  There is one author and the other author I assume is soon to be here.

CHAIRMAN PELLEGRINO:  He'll be back.  He promised to be beamed down.

PROFESSOR SCHNEIDER:  With a name like Meilaender, I assume he's very prompt ordinarily.


PROFESSOR SCHNEIDER:  There you are.  I'm sorry.

PROFESSOR MEILAENDER:  I just didn't bring my thing along.

PROFESSOR SCHNEIDER:  I kept looking at the empty chair.  I was enormously stimulated by both papers because they were so thoughtful and they made me think and I want to talk very quickly about some of the things that they made me think about and to ask for your help in understanding the papers better.

The first thing that struck me about the papers was how enormously powerful they were rhetorically.  There is language that is mobilized here that seems to be at the outer limits of the serious.  There are phrases like "destroying ourselves in seeking to do good," the possibility of "our being diminished, dehumanized and corrupted" and so on.  And I'm not entirely sure that I understand where problems at that extremity are actually materializing in the debate about transplantation.

As I looked at the arguments, I could see that carried to some possibly imaginable extreme problems like this might be arising, but I couldn't see that they were anywhere near to actually arising.  For example, there was considerable discussion about the consequence of our being embodied and the fear that transplantation somehow endangered the meaning of that.  But it was never possible for me to understand  how the factor bar being embodied in the actual context in which transplantation occurs has actually created any kinds of problems.

To take another example, I agree that death is ultimately not preventable and that you can't try to exert all of your social resources for solving all of the problems that death presents.  But it seems to me that we're a long way from reaching the point at which we would say to people "Well, you're dying; death is inevitable and we need not agitate ourselves about preventing it in this case."

Finally, I'm happy to agree that there are limits on altruism, but it's not clear to me why those limits on altruism are being approached here.  In fact, if I were to try to think about the problems the country has, reaching the limits of altruism does not seem to me to be very high on the list and a situation in which it is possible for the country to agree that altruism is a good thing and to see people practicing it in a fairly dramatic way I think is a socially very desirable sort of thing.

I'm certainly enthusiastic about the idea of looking, as Dr. Kass was saying, at these questions anthropologically.  I think my difficulty is that I don't understand the anthropology in the same way that I think a lot of the people who have been talking so far today do.  My own contact with these issues comes partly from having done research with dialysis patients and partly from familial experience and I guess I see a lot of these kinds of questions in a much more cheerful light.

For example, there was a good deal of concern in the papers about the prospect that people would be coerced into donation.  My reading of the empirical literature suggests that coercion has turned out to be far less of a problem than one might in principle anticipate and there are a lot of reasons for this.  One of them is that when people make decisions about donating organs, they don't think long enough to be coerced.  They tend to make their decisions with such rapidity that they've decided what to do by the time the question has been posed. Informed consent doesn't work with donation of organs because people have already decided one way or the other to donate their organs and the fear of intrafamilial pressure according to the empirical literature that I've looked at also does not suggest that very much of this coercion goes on.  I have to say that if a certain amount of pressure goes on to recognize your obligations to help members of your family, it doesn't unduly concern me a priori.

One more issue along these lines of the facts of the anthropological situation: far from feeling that they've been coerced into doing something, the record suggests to me that people who have donated organs feel that they have benefitted enormously from it, that they very often feel that it's the most important thing that they have done. I'm talking about living donors and the empirical studies of them suggest that they wind up being happier people than the average of the population because of their donation which has changed the way that they think about themselves.

And I do think that it's also worth saying that one reason you might be interested in transplantation, whether it's a crisis or not, and I must say I don't have any idea what the word "crisis" means and I propose not to use it if possible. But one reason you might be in favor of transplantation is because of the evidence that in many kinds of transplantation at least the transplantation is cost effective.  That is, that you get more effective treatment of patients for less money.

So I appreciated the rhetorical and argumentative force of the papers, but I'm still not sure that the papers ever actually go to the point of saying not it is possible to imagine a world in which things have come very badly apart, but in which we are actually in any danger of reaching that point.

CHAIRMAN PELLEGRINO:  Thank you very much.  Eric and Gil, how do you wish to respond?

MR. COHEN:  Thank you very much for the comments.  The most forceful point I take, and let me see if I can respond, is not seeing as clearly as you would have liked perhaps the dilemma that we confront in the current practice of organ transplantation and even more deeply I think the dilemmas we confront as we think about possible reforms and way to try to boost the organ supplies.  Let me see if I can quickly paint a clearer picture of the dilemma than I did perhaps for you in the paper and hoping that Gil will  help me out.

I want to focus on the issue of living donors because I think, to be frank about it, that's where the action is.  We've done a very good job in as much as our goal is to increase the supply of organs with the collaborative that's been going on over the last few years and improving the rate at which we retrieve organs from the deceased who are eligible to be organ donors and there is frankly simply a limit to the number of deceased owners that we'll ever have.  So inasmuch as we face the prospect of hundreds of thousands or even millions of people in end-stage renal failure who are in need of organs and if we think that is a crisis that needs to be ameliorated, the only place we can look to ameliorate that crisis short of finding other alternative medical approaches to it is to living donors.

Even before you begin to think about financial incentives and the issue of commerce, the practice of procuring organs from living donors "test the outer limits" to take a phrase that you began with of the medical ethic.  I think it's a testing of the outer limits that is frankly justified in many situations.  But it is a novel case where the doctor is cutting into a healthy patient and where the person only becomes a patient in the first place because of the action of the doctor.  It's kind of an inversion of the typical encounter between the patient and the doctor.  Usually patients arrive on the scene sick and wants the doctor's hands to help them.  Here the patient arrives on the scene healthy and it's only the doctor's hands that put them into any kind of a jeopardy.

Now in the kidney case, the risks are fairly limited, more severe as I understand it in the liver case, but Dr. Arthur Matas who came and spoke to the staff who is a very accomplished kidney transplant surgeon and also a very articulate defender of the case for having financial incentives with a view to trying to increase the organ supply described the surgery of procuring the kidney from the healthy living donor as the most terrifying surgery he's ever done.  He said it's not the most complicated.  It's not the most technically difficult.  But it's the most terrifying.

Now I think it's in general and in many cases a very good thing that he does this terrifying surgery, but I think it's at our peril that we ignore the fact that we do something a little bit terrifying or something that should terrify us a little bit when we see the healthy as a potential source of rescue for the sick.

When you begin to move to where we are, which is people calling for potentially significant changes in the way we do things - namely, going from a system that is organized around the principle of gifting to a system that is driven to some degree by the financial incentives that might be given to living donors, we simply can't ignore the fact that the sellers are going to be the poor, predominantly.  Most well-off people are not going to sell their organs as a way to buy a third car.  The people who are going to sell their organs are going to do it largely, I think, as a kind of act of desperation.

Now, there's something strange about worrying about the exploitation of those whose situation is already so desperate that in a certain sense they live in a state of exploitation.  But to talk about financial incentives of the poor to sell their organs changes something which now in many cases and hopefully in most cases is a kind of act of magnanimity  - an act as it confers, as you say, great benefits on the donors to an act of desperation.

It's clearly been sort of free market conservatives who have made a rigorous case for the buying and selling of organs, some even saying that this would simply be a way of improve the quality of life of the poor.  But even from a conservative perspective, even from the perspective that takes self-reliance seriously as a virtue that all of us need, but the poor, where it's possible, need especially - one is not self-reliant by selling a piece of one's body.  Right?  The constant critique that everyone profits in some way from the organ transplantation system  except the donors is certainly true and can't be ignored and the commercial dimension of this certainly exists.

But those who are compensated are generally compensated for professing something.  They're compensated as professionals, as doctors, as nurses, as professionals working for the organ procurement organizations.  The donors who might potentially be compensated are not being compensated for any profession they have, but for a part of themselves, a part of themselves that has turned into a piece of alienable property.

So I guess the point of this and I'll close and turn it over to Gil is: we can't ignore the dilemma in the practice as it currently exists.  We can't ignore obviously the great hardship of those who suffer for organs, the great virtue and goodness of the physicians who give them hope, of the family members or generous donors who give them the organs that make  that hope possible and in general, I think organ transplantation including the living donors is better rather than worse.  But we also ought to still be a little terrified at the practice as it currently is and we ought to recognize how much more terrifying it might become if we turn it from an active magnanimity  into an act of desperation.  I think that's really what the heart of the debate at least about the issue of financial incentives turns on.

PROFESSOR MEILAENDER:  Let me add just a couple things and then we can see where you want to go.  The "outer limits of the serious" is exactly what I would encourage you to think harder about, not in the sense of where we might go, but what the inner meaning, the true meaning, of certain events is.

Let me just comment on a couple particular things that you said, but then come back to what I took to be the central thing that I was trying to accomplish which I may have failed to accomplish because it didn't seem to come through very clearly to you.  But I think a slightly more careful look at some of the things I said in my paper would be useful.  For instance, you moved very quickly from saying for someone death is not preventable to hence we need not agitate ourselves over that, whereas I tried to take some care to work through the two angles from which we must always look at death, the one angle from  which  of course it is always an existential, deeply troubling problem, another angle from which that simple fact can't become in and of itself a crisis, so that there wasn't any easy move from the one to the other.  I think the trick is to learn when and where we need to talk in one way and when and where we need to talk in the other.  I'd say that.

The limits of altruism issue is not a question about whether we have so many people performing altruistic acts in our country that we should sort of worry that maybe we need to tamp it down a bit or anything like that.  That wasn't the issue.  The issue is whether there might be some acts which, though altruistic in spirit, nevertheless undermine the integrity of the body, the lived self in the body.  That's the issue.  It's not a question about whether there's a large percentage of altruistic people around in our society or anything like that.  So that's the issue and I think once again your way of reading it missed the kind of question that I was concerned about.

And that would bring me back then to what  I thought at any rate I was fundamentally trying to do  which I think does make contact with what people are currently talking about and arguing about in connection with transplantation and that is: I was trying to understand why one might turn in the direction of gift rather than commerce and why in fact we have in the past turned in that direction because the pressure to turn in a more market direction is a recurring pressure and it's a fairly strong pressure right now.

That's what I was trying to understand and I don't think it will be sufficient just to say this is what we've done, here is how we've done it in the past, here are what some authorities say.  I wanted to try to understand why it is that thinking in terms of gift might retain a certain sense of the organ.  It's not just a sort of part or a thing, but the self that is given there and why that's lost in some ways if we think in terms of commerce.  That doesn't seem to me to be out of touch with where discussions are going with respect to transplantation.  On the contrary, it seems to be right at the heart of one central point.

Now I may have done a lousy job of trying to do that.  That's all possible, but that seemed to me to be the chief point that I was trying to get at and to be honest to suggest that that's not at the nub of some important issues in transplantation right now, I would really find that astonishing.  I just don't believe that.  I think that would be mistaken.  So my apologies for not getting it clear, but that's the point and it seems to me that that's a point which unless we think through and try to understand we really won't be a position to say much that's useful about the commerce issue.

PROFESSOR SCHNEIDER:  If I may ask one question, I did not understand either paper to be about the specific question of selling organs.  I understood it to be much more directly about the very idea of transplantation itself.  Did I misunderstand that?

PROFESSOR MEILAENDER:  Yes, but there's an important — No, you did not misunderstand what the paper was about in one way, but there's an important part where having talked a little bit about what Richard Epstein had to say at our last meeting.  I note from something that he wrote elsewhere that he points out that the strongest arguments against turning the organ, it wouldn't be organ donation anymore, but the organ donation process into some kind of market system  are arguments that in fact might be taken to be arguments against transplantation more generally and that therefore that's why I turn to thinking through transplantation more generally and trying to think through the way in which the idea of gift is at the heart of preserving some sense of the self that's at work there in a way that it wouldn't be preserved if we turned in the direction that Epstein was recommending.  So, yes, I turn to a discussion of transplantation more generally, but out of that particular concern.

PROFESSOR SCHNEIDER:  Out of the concern about the effect of turning this into a market?

PROFESSOR MEILAENDER:  Out of the sense that you can't answer why you shouldn't turn it into a market without asking some more basic questions than just that.

PROFESSOR SCHNEIDER:  Let me just say one other thing.  It's not at all clear to me that compensating people for, and this is to respond to what Eric said, that compensating people for organs means that you're getting organs sold by poor people.  I realize that's the way it works in India.  But as I've been looking at some of the literature on the difficulties that donors face, the difficulties they face are often economic difficulties.  They're the difficulties that arise out of not being able to work for whatever time it takes them, sometimes a fairly large amount of time, to recover from the surgery and I take it that one of the possible responses is to say we're not paying you for your organ, but we are trying to keep you from suffering economically for the gift that you've given.

MR. COHEN:  I think that that's an important distinction to keep in mind between ensuring that those who want to give as a generous act don't incur insurmountable economic burdens in giving the generous gift.  That's different from paying people a price for their organ as a way for them to benefit themselves economically.  I think that's a distinction that can be preserved and I think they have different meanings.

CHAIRMAN PELLEGRINO:  Other comments?  Questions from the Council?  I have two people, Peter and Bill.

PROFESSOR LAWLER:  I agree that buying and selling is where the action is and I agree that buying and selling is a terrible idea and you don't have to get way metaphysical in order to reach that conclusion.  It's — I guess I can't see how it could be done without avoiding horrible abuse.  To give a dumb and flip example, our country has lots of undocumented aliens and states are electing to give them welfare.  You can imagine a scenario where someone would say "Welfare?  You've still got two kidneys!"  There would be the expectation that your kidney might be understood as part of your net wealth or something.

But having said that, Gil's paper in particular, I agree with you, does seem to be an argument that causes us to reflect upon all transplantation and maybe collapses one distinction I would want to preserve.  He says on page 14 that especially with reference to the footnote that criticizes a great thinker that if I give my dead kidney, my cadaver kidney, in advance I'm giving a gift of my very person as if I can't separate my dead kidney from my being.  It's a tough question whether I can separate my live kidney from my being, but my dead kidney is not me.  So in a certain sense, one of the smallest gift I will ever give in my life will be my dead kidney because it's of no use to me.

So we were talking at length in a certain way I'd be more generous if I'd bought you dessert than donated my dead kidney.  Although when I read this, Gil's reflections, I think a donation of a live kidney has to be an act of love and nothing short of an act of love.  I don't think I would do it otherwise.  So I might step up to the plate like the speaker said this morning for one of my own relatives, but in general, I don't think I would do it because I think it's a powerful argument that it is a gift of my very being.  My dead kidney, I want someone to tell me what's the big deal.


DR. HURLBUT: The issue that keeps coming back to me was brought up this morning by Leon in the sense that there's the word "crisis" and "shortage" that should be introduced into this equation and it relates in a special way that a personal element of what is involved in donation.

I mean I think you bring it out, but maybe you could say more about this.  The idea that there's a shortage or a crisis, it seems to me those are the wrong words.  It seems to me it should be presented as more an extraordinary new possibility or an opportunity to engage a new relationship between healthy individuals and those who are in need of cure.  And to me, that implies the difference between the word "opportunity" and "obligation" and as soon as you start saying there's a shortage or a crisis, there's a kind of obligation that seems to violate the very source power of the goodness of this that is the actual lack of an obligation but the act of super abrogation that's implied in donation.

It engages a different part of the person and in that sense, it carries a certain beauty, truth and coherence of what we see a person to be.  As soon as we start walking the world feeling guilty because we haven't donated, I think we're going to weight down natural life with a new sense of obligation that would not be good.  But if we don't do that we could still lift up that notion that there's an opportunity for a free act of genuine giving and that seems to me not to use a bad pun but the heart and the soul of this whole matter that there is an engagement of the best of a person in this somewhat unnatural process.

PROFESSOR MEILAENDER: I didn't know if you wanted us to respond at all.


PROFESSOR MEILAENDER: Okay.  Just a quick comment.  First, a quick comment to Peter Lawler.  Again, you said my dead kidney is not me.  How can a man who sat here and listened to Tom Lynch this morning say that quite so straightforwardly?  I mean obviously in some senses it's not, but there are other senses in which it seems to me you ought not quite say that.  Then, Bill —

PROFESSOR LAWLER:  Could I ask what they are?


PROFESSOR LAWLER:  Could I ask what those senses are?

PROFESSOR MEILAENDER: Yeah.  They want that kidney from you while you're a changeling in the eyes of your loved ones and it is some sense therefore you that they want.

PROFESSOR LAWLER:   But they don't want, in some alien sense, that they're coming after my kidneys.

PROFESSOR MEILAENDER:   No, I don't think I said that.

PROFESSOR LAWLER:  No, but I have given this thing.

PROFESSOR MEILAENDER:  Yes, I understand that and I didn't say that you shouldn't.  I just was uncomfortable with the — Well, I was originally uncomfortable as you know with your sovereign authority language with respect to it.  But in general, I would just want to be careful and cautious about disassociating one's self too much from those remains.

But then I was just going to say, Bill, I  think I agree with the direction you're going, though worry that I had in the paper was that on the one hand medical progress makes possible something's that remarkable for people.  Then because it has done that, we begin to think of it as a kind of entitlement that we ought to have and then it's a crisis if we can't have it and the use of that language, the reason, I mean there may be a lot of reasons, the reason I back off from the crisis language is that I just think that that language encourages us to do things, at least to think about doing things, that we would not think about otherwise, tinkering with definitions of brain death in order to get what we want, seeing the death of patients becoming, as I said in the paper, a technicality that we need to see to in order to get there, restructuring death in ways that seems less than humane.  Maybe any or all of these are okay.  I'm happy to argue about any of them, but I think that that language that turns it into an obligation begins to encourage all those things in ways that I think one ought to at least worry about.


DR. ROWLEY:  I have three questions and comments.  The first is a whole lot of this involves insurance and health insurance in one way or another. And as has been commented on this morning, it was clear that the poor and, if you will, the minorities of various sorts and the financially disadvantaged are the ones that are, I'm not saying this correctly, but are disproportionately on the waiting list and the people who can afford to take care of themselves are amongst the advantaged and less constrained by what they have to do and the kinds of problems that they face.  So I think we have to be straightforward in understanding that the lack of universal health insurance in this country complicates the whole situation enormously and I don't think we've faced that issue very carefully.

And the third, not the second, issue that I have is with Dr. Pellegrino and just where are we going with this discussion of transplantation because I remember being part of the Council under Dr. Kass and I think it was in 2003, but I can't be confident about the timing, but we did have a discussion about transplantation.  So you may not be prepared to answer and I understand that, but I think that as a Council member I wonder about that.

And the specific question I have for Dr. Cohen particularly because in his paper he refers to the IOM report is the IOM was mainly concerned with organs from deceased individuals and as I recall just a chapter and I realize we're going to have a report this afternoon from the Chairman of the committee that wrote the IOM report, but the IOM report is mainly about organ donation from deceased individuals and, Eric, you made the statement just now that the only place to procure additional donors of kidneys is from the living and I think the IOM report mainly focused on how we could improve donations, if you will, of kidneys from the deceased.  So they seem to be in direct conflict.  So I wonder if you would clarify your statement as to why you think that the only way to increase organs, kidneys, to be specific is from the living rather than from the deceased.

MR. COHEN:   Let me see if I can be clearer than I was before.  I don't think there's no room to procure more organs from the deceased.  I do think we probably can by improving the procedures, by considering some of the recommendations in the IOM report which we'll obviously hear more about later today.  We might be able to increase the number of organs available from the deceased.  The point I was trying to make is that I think we're already, different people have different numbers, but over 50 percent is what's called a conversion rate which is the number of eligible deceased donors whose organs we actually procure.

Now presumably there is going to be some portion of people for their own reasons, perhaps good, perhaps not good, who actually have substantive reasons why they don't want to be donors which means, while there's room for improvement, there's limited room for improvement and there's a limitation that is grounded in how people die which makes them eligible or not eligible to be donors.  So when we take that fact and then juxtapose it with the numbers we saw this morning about the size of the population that has or might have or will have end stage renal disease, the point I was trying to make is that inasmuch as we see this as a crisis that needs to be ameliorated the only way we'll ameliorate the crisis is to not only try to increase the organs we can get from deceased donors.

But to try to increase significantly the organs available from living donors and that's an area where there isn't as much of an inherent limit because any healthy person in theory could donate a kidney.  We're talking only in the kidney case and to some degree in the liver case.  So I didn't mean to suggest that there's no room to get more organs from deceased donors, but I think the real debate that we're going to confront, not the most important debate ethically, but the biggest practical debate, is going to be about policies regarding living donors.

DR. KASS:   Excuse me.  I wanted to speak primarily to Gil's paper and begin with my praise for the form of it and the shape of the argumentation leaving aside some of the details.  First to say, I think Gil is absolutely right that this Council at least ought not to — The discussions that we're having, Janet, may very well be triggered by the fact that even in the three years since we first talked about it, the "shortage of organs and the need to do something about it" has become really a much more lively topic.  There are articles about it in lots of places.  The passion that was generated by this discussion that we had at the last meeting indicated this seems to be a problem that you would have to be an ostrich with your head in the sand to ignore these days.

Nevertheless, if this Council wants to do its job, I think Gil is right in saying that we might take that as the point of departure for our reflections, but we have to step back and begin to think about the human significance of what these innovations produce so that the place that he would like us to begin is not to simply begin in the middle of the things taking the shortage for granted and its place, but to begin prior in an earlier place. And he tries to do that for us by thinking, to begin with, about the limits of how we think about mortality as such.  Carl Schneider's qualification, I think, Gil would probably accept and then to encourage us to think about the strangeness of having started down this road in the first place of what it really means to start to look upon the embodied whole which is our life as also a source of resources in part to benefit other people and the reluctance to start by thinking about the living body as such a resource naturally to go in the direction of the cadaver.

And there I think he does well, forgive me if I'm simply rehearsing what strikes me as the important parts of this, reminds us that in the first instance the dead body is not rightly seen if it's seen only as a natural resource for the benefit of others, but is the mortal remains with which the family and associates have to deal and that in all kinds of ways even if you can't harm the dead person, there is at least and especially in this limited period of what Bill May beautifully called "the newly dead," I don't know whether we've all read that article or not but it should be out amongst us for rereading, that this all too much resembles the person  whose life this once was for us to abstract from those considerations and say "Ah, here is a kidney to save Patient X down the road."

How have we managed to get ourselves to the point where we've, as a culture, accepted this practice overcoming certain kinds of scruples and reluctances?  Gil gives a kind of an account that we've done so not because we think natural resources in the absence of objections we will harvest them or collect them, but we've done so because we see that there is the possibility of gifting, even under these circumstances. And that the giving of the organ is in a way a gift of oneself even when one is no longer here to present that gift and I think it's terribly important when we think about the new proposals to remember why it was we've adopted the practice of giving as opposed to the practice of routine salvage, which is what the French and the other Europeans tried.

Now faced with a kind of critique of this practice because these moral scruples seem to be the major obstacle to finding the necessary organs to shorten the list, there is I think a great deal of pressure to encourage living donation and since living donations are odd, I mean for a loved one it's easy but how to get more people to come forward, that's where it seems to me where the major push of the financial incentives is today.  They're modest proposals for funeral expenses and things of that sort to try to increase donation from the deceased, but in public meetings and in publications, we will hear from Dr. Hippen I think later today, more and more people are thinking that the only way you're really going to address this shortage is to begin really to offer financial incentives and even a market in organs.

I guess I'm inclined to say that unless we go through a kind of an analysis of the sort that's here and see if we can either defend or find fault with the justification for the system which has been in place from the beginning of transplantation and codified in the 1984 Act, we will not be in a position  to justify or think clearly about these new proposals which begin not with anthropology or not with these larger questions but begin with the simple fact people are dying on the list.  What are we going to do about it?

So I would like very much to endorse the paper.  I have some minor difficulties with this or that, but as a form for us to think about this question, I think this is the right shape and I guess my invitation, Mr. Chairman, would be to my colleagues not so much to Gil whose paper this is.  Are there weaknesses in the development of this argument which seem to me to be primarily a justification of the practice we now have made with some fear and trembling and worrying about that there are too many potential transplant surgeons hovering over the family close to the time of death and all of that.  He worries about those things, but he's not asking us to go back on that.  But are there difficulties with the form of the argumentation and in particular with the substance of it?  But that would be my encouragement to my colleagues to see whether he hasn't provided us with at least the beginning of a framework with which to stand before the new proposals one way or the other.


DR. KASS: Sorry to be so long-winded.

CHAIRMAN PELLEGRINO:  Any further comment on Dr. Rowley's question?  To me which I think depends very much on what the Council thinks about the question mark at the present moment, as Leon has pointed out, you've started a lengthy discussion, a good discussion.  As we look back at the record, it's kind of unfinished business in view of the fact so much has happened since the things you've just emphasized.

So the question really is is there something that we can contribute of a positive nature that has not been approached and that's the question before us and the reason for the papers for the rest of the program after which I think we'll take a fresh look at it and try to give you a more specific answer.  But I think I'd like to hear what the Council members feel about this.  It is a very urgent, ethical and social problem and it's going in directions Leon has  very capably and eloquently outlined that will change the atmosphere and I think I would like to know how more of you feel about it and I think the two papers we've had were meant to be a stimulus to you to see in what direction perhaps we ought to go.  One has one's own ideas, but I'd like to hear yours.

I want to emphasize our doing that this afternoon and the rest of today if we can because we look forward to the summer if we're going to make this a major project to trying to get it in its final form so that in the fall you can have something very concrete to look at or we may not undertake it if we decide that after we hear the internal medicine report  or something that there isn't anything significant that we can add.  I happen to think there is, but I'd like to open it up to your comments, Members of the Council.

PROFESSOR LAWLER:  I agree with the general —

DR. PELLEGRINO:   And excuse me.  I just want to be sure I get both of you.


DR. PELLEGRINO:  Go head, Peter.

PROFESSOR LAWLER:   I agree with the general sentiment expressed by Leon and Gil that the  metaphor of the crisis produces the thought that there needs to be an immediate response, decisive action, executive action.  But when you think about it, this is a crisis if it is a crisis specific to a very definite stage of medical technology.  Not so long ago, we couldn't do transplants and presumably, and I'm no expert on this, somewhere not that far down the line, we will no longer need to do transplants because we'll have xenotransplantation, some kind of regenerative medicine, artificial kidneys and things I'm not capable of even imagining, but will surely be there.

And so the danger is in crossing boundaries now that would apply to other areas reacting to a crisis is relatively, although real, it's a real problem of people who will die because of end stage renal failure and the inadequacy of dialysis and all that, but there is the danger in over reaction  without sufficient reflection and we may be the guys to do the reflecting on that.  For example, a rough parallel is an issue of euthanasia.  The two arguments for euthanasia that were nontrivial would be tremendous depression and horrible physical pain.  We can now deal with the depression and the physical pain and the same way to cross the boundary and enter into the buying and selling of body parts in response to this alleged crisis I think in the long term we would regret because of this uncertain applicability  down the road and the inability of preventing abuse and all that.

I think you can reach those conclusions with some reflection, with deep reflection, and the character of embodiment and all that, but there's a lot of good common sense that falls short of deep reflection which is also in Gil's paper.  So I agree with Leon that this is something we are well equipped to take up and we should take it up.


DR. BLOOM:  Unless there was some a priori decision that you all made to look at this focused issue, I would want us to take a broader look because it seems to me that while there is certainly a shortage of organs to transplant than there is to people who have end stage renal disease, if we only look at that piece of the puzzle, there is always going to be a shortage and it seems to me we have to look at the causative upstream events that we should speak out about with equal vigor which is obesity, Type II diabetes and secondarily renal disease which are items of self-responsibility.  These people got themselves into this problem.  Maybe they had genetic vulnerabilities that got them further down the path than others facing the same metabolic and environmental circumstances might have.

But if we only patchwork this issue without taking a look at the bigger issue of what causes them to start down this road to disease and even broader issues than that in terms of, to me, self responsibility for your own health, is a major thing that we should speak to because it's unethical for us to pretend that medicine is going to solve all bodily ills and we have to start to convince people or it's always going to be 20 plus years down the road before preventive medicine pays its due bills on this society.  If we learn anything from the genome in terms of vulnerability factors, it's not going to eliminate self responsibility and there's not going to be always a magic pill or a magic organ or a magic cell that's going to make somebody well again after a life of abuse.  So in response to Leon's comment about the form of Gil's paper, I would see an equal stream be devoted to the upstream events for which this is a partial solution downstream.

CHAIRMAN PELLEGRINO:   Thank you very much.  That's very helpful.  Other Members of the Council?  Alphonso?

DR. GÓMEZ-LOBO:   I want to back up a little bit again, but in another sense, not in the medical sense as Dr. Bloom wants to.  Many of these issues were completely new to me in many ways.  So I'm trying to think through the arguments and the reasoning behind them.  Now I think that the Council has helped me a lot in this discussion of the crisis language because surely it's one thing to say there's  a crisis and we should do anything to solve it and a different thing to say there's a shortage here which may be caused by other reasons, but on the other hand, that may not generate entitlements or rights, the kind of thing that Bill was pointing to. So I found it very useful to tackle these problems from a broader perspective.

Now what have I gained from this discussion right now?  At least the following.  The death of people on the waiting list is of course deeply painful to me, but equally worrisome is the cutting through the healthy body as Eric has pointed to.  So it seems that the altruistic motive at the moment is the only thing really morally holding the practice in place and that's why it seems to me that that should be a matter of further reflection because that's exactly where the big differences are going to arise when we get to the issue of buying and selling of organs because I think that's where the pressure is going to go.

Now as a minor contribution in that regard and I'm probably jumping ahead of what Jim Childress and Dr. Hippen are going to be saying I think the question of the freedom of an agent who doesn't have resources and therefore sells a part of the body as a form of income that there is also a crucial issue.  Is there the alleged freedom in that transaction or not?  Because of course, that impinges on the American ideal of autonomy and of course if autonomy is assumed in that case, we may have a justification for the free markets or the regulated markets that would not exist if we questioned that assumption.

CHAIRMAN PELLEGRINO:  Thank you very much.  Other comments on this subject?  Dan?

DR. FOSTER:   I just want to make one clarification about I've heard all morning people talking about doctors cutting on living bodies that are not ill.  I think that most people in the room might have forgotten that we have a huge occupation of doing that right now in plastic and reconstructive surgery.  We cut into these bodies all the time.  We do liposuction and all of these things in normal healthy people and many times with great risk and we don't have — I mean there have been a lot of deaths here and so forth.  So we shouldn't try to set out that there's something magical about cutting into a living body when we're doing that all the time now and it's one of the fastest growing things.

One of the things that was said this morning is the most lucrative salaries in medicine are not neurosurgeons.  They are plastic surgeons and they're paid in cash and I'm talking about the fact that there are huge amounts of money there.  So I just want to clarify here that that is not a valid argument about saying that we shouldn't do this.


DR. KASS:   You're not using that as an endorsement I trust.


DR. PELLEGRINO:   Thank you.

DR. FOSTER:   I'm not endorsing.


DR. GAZZANIGA:   Yes, just a point of information and maybe the staff can dig this out, but we've heard about how various European countries handle this problem differently by almost conscription by the Dutch by the assumption the state owns the body and so forth and we also have a number of those countries that have basically one payer socialized medicine.  Can we look at their organ transplantation numbers just as an experiment to see whether the things we're puzzling here in fact move to solve the problem?  There must be data on that.  I don't know it.

MR. COHEN: I certainly don't have it at my fingertips the data on other countries, although I think this would be a very beneficial thing for the Council to hear an expert come and talk about.  Obviously different countries have different systems, some with a kind of conscription system.  Iran has some system of regulated payment in fact.  So I think it would certainly be very important for the Council to hear either through a staff paper or an invitation of an expert how things are working in other countries.

Could I respond quickly to Dr. Foster whose comment I've very grateful about?  One has to begin with an important distinction between plastic surgeons who are trying to restore a body that has been disfigured in some way, work that I think is heroic, and plastic surgeons who are being paid in cash to perform changes on the body that are optional at best.  It seems to me that should only further awaken us to the problem here.  I mean the fact that doctors are doing this doesn't mean it's a good thing for us to do.

Now I think certainly in the case of kidney donation and certainly in the case where the living donor is doing this as an act of love to a family member, one in a certain sense could praise the courage of the doctor who is performing such a terrifying surgery precisely because he knows the life of a healthy person in certain sense is in his hands.  But I don't think we can ignore that there is something that should give us pause here and that there's a reason why, as I cited Dr. Matas before, doctors see these surgeries that are not the most technically difficult as the most terrifying and this is not saying that we ought not be performing them, but it does invite us to think about the different human meaning of that surgery and how that meaning might be changed even further if the person upon whom the surgery is being conducted is doing it for pay as opposed to as an act of love or as an act of magnanimity.


DR. FOSTER:   I want to make one other caution.  I think one, Eric, ought to be very careful about the big point you made of an expert that came to talk to you and said this was terrifying surgery.  I would say that if you looked at 1,000 transplant surgeons that you would be very lucky to find five that felt the same way, I mean, in the sense that every surgery is at risk. 

But I was astonished to hear that this was terrifying surgery.  I guess what you meant was that because this was a person who didn't have to have surgery and I suppose that's why that was there.  But I know the person who is the most involved in living liver transplants out in Dallas and so forth and so on and I don't get any sense that this, they want to be very careful about this and so forth.

But I wouldn't want to put too much statement in one person's feeling about doing this, surgeons.  I mean we think we always talk about evidence-based medicine.  If we're going to quote something that is meaningful, then we ought to have evidence for it rather than a singular statement by one transplant surgeon.  Okay?  I mean if we're going to be a serious council we need to look into that as well is the only point, the only response, I want to make.

MR. COHEN:   I'll respond only quickly.  I'm not trying to use this one surgeon's remark as a way to have you see how every surgeon thinks about this.  I will simply repeat that the human meaning of a surgeon performing surgery on a patient for whom the surgeon can do no good for that person's body, he can  only do harm, and especially in the liver case, there's a fairly high rate of complication, not serious complications, and again I'm not saying that the surgeon isn't doing something heroic by performing the surgery.

But I think we need to be at least willing to think about the fact that we have a different kind of encounter here between a patient and a doctor; when someone arrives not as a patient but becomes a patient because of the doctor's action.  I'm not suggesting that doctors are terrified because they're worried about their competence and that was precisely the point I was trying, perhaps failing to make which is that the point here is that the greater pause is not because the surgery is technically more difficult but because the meaning of the encounter between the surgeon and that patient is different and I'm simply  trying to make note of that.

DR. FOSTER: Gil, as long as I have this microphone for one second, I mean to get back to what has been approached here, we have a pretty straightforward problem.  Now if you're worried that taking an organ out somehow diminishes human dignity as I think probably Gil thinks even from the dead, then that's not going to address the problem here.  We take organs out of people all the time and spleens and everything else.  We don't think they're demeaned or it's undignified.  We do it for health and so forth but there's not something magical in my view for doing it.

The problem is a very simple one.  That is we have a lot of people whose lives we can save and save money if we transplant and that number of people is increasing very dramatically and we may be able to increase 50 percent in deceased donor things with incentives of one side or the other.  Our first speaker this morning said that she preferred to do that first of that.  So I don't know how and Dr. Hippen is probably going to tell us that in some advanced hospitals, he told me this this morning, that the conversion rate is as high as 70 percent with some things.  But over all, we could probably double the number of kidneys which are there.

Then we have to ask ourselves the problem, I don't want to sound, the philosophers, Robby George is not here, saying I'm being utilitarian and so forth.  We have to decide is the loss of these people who could be saved such that we take the risk of doing living donor transplants and that has to do with the percentage risk that's there statistically.  If you get in a car, you're going to have much more chance of dying from within a few blocks of your house than you are from doing the surgery.

Now it sounds like I'm speaking for this.  I'm not.  I'm not at all sure that I think that we ought to expand this.  That's what I'm trying to understand, but that's the problem and I think it's maybe one thing to go back and look to say what it means to be a human or what a dead body is.

But I'm interested in the practical problem that we have 93,000 people that are on the waiting list.  Some of them are dying.  Can we do anything about it or do we simply say as a society that's tough luck that that's their problem that we can do that?  And that's what I think we ought to focus on and we may say we don't think that we should do that or we could say that we think the risk is minimal enough that an informed patient might be willing to do that along those lines.

I'm not against these discussions.  I always enjoy reading Gil's papers.  I mean they always make me think even when I don't agree with them.  But that's where to get down to the core, Mr. Chairman, that I think that we can really say something about it.  Now that doesn't mean that we can't couple that with philosophical discussions along the lines we did with enhancement and other things, but it's the practical final answer that we have to - I think that people want to hear from us as a thoughtful group.

PROFESSOR MEILAENDER:   If I could just make two quick comments sort of intervening in the exchange you and Eric have had.  One, I do not believe you're just interested in practical questions at all, Dan.  You're interested in what it means if a human being suffers and what our obligations are to those who suffer and how we ought to think about them and so forth.  These are by no means only practical questions and I just want to — Don't shortchange what you yourself are interested in.

The other is with respect to the business about a doctor finding doing the transplant surgery a terrifying thing in a way.  I would like to put the point normatively.  I haven't made any studies about whether a 1,000 transplant surgeons do or do not feel that way but they'd better.  They should and if they don't feel that way about it, then we need to ask ourselves what's gone wrong, what have we lost that they've lost all sense of the trepidation they ought to have in simply cutting into a living body in order to help another one.

I don't mean that it's wrong to do that necessarily, but I think we can only understand what's going on if we have a certain kind of sense of something very peculiar there and it's very peculiar for medicine.  That's all.  That's a normative claim.  I have no surveys to back it up but they ought to think that way.

DR. FOSTER:   Last thing.  I do want to say one other thing before this conference is over, but in one sense I couldn't agree with you more about both things you've said.  Of course, I'm interested in a lot of other things besides the practical problem, but right now, the practical problem is before us.

But a terrified surgeon or a terrified internist is not a good doctor.  If you're terrified, then you don't make the right decisions.  You want somebody who's concerned about the thing, but if you're shaking about the implications, I think that the guy ought to be worried about how he's taking out the kidney rather than worrying about the implications along these lines.  I talked about the Dallas Mavericks.  They worried so much about what was happening to them that they couldn't shoot shots and that's all I'm trying to say.

PROFESSOR MEILAENDER:   But he shouldn't — Of course, you're right.  We don't want his hand trembling while he's cutting, but we also don't want him to come to think of what he does as such a matter-of-fact thing that important and deep questions about it can no longer be raised.

CHAIRMAN PELLEGRINO: Dr. Hurlbut and then Dr. Carson.

DR. HURLBUT:   I was just going to make a very obvious comment, but since you just made that comment, I would like to add that your comment about the plastic surgery does raise, it doesn't just argue for the similarity here on the positive sense of transplantation surgery, but it argues for the strangeness of quite a few things we're doing in medicine today and I think we're all a little, as a physician I'm a little, uneasy about the trend toward plastic surgery and I think we should reflect on that as the larger arena of the way we're disposed toward thinking about the body.

Now even as I agree with the central point you were making, there is something a little strange when you read an account of somebody who had plastic surgery and then died.  You feel like why did they do that.  There's something about the natural body that remember Galen said, "The physician is only nature's assistant."

It seems to me that you have to take some beckoning from the way nature is organized.  I know there's a big so-called heresy in modern world, the naturalistic fallacy, that you're not supposed to look to nature to get any sense of how things should be ordered.  Nonetheless, there is a certain order in the arrangement of being and eminent powers within the being that we should keep as part of our guiding principles in medicine and plastic surgery does raise some challenging new questions that we should take seriously.

Having said that, I want to get back something much more pedantic or more procedural.  When Mike brought up the question of the scope of our inquiry and made, I think, the important contribution that we should look to the experience of comparative cultural approaches and different social practices and starting assumptions, that's a really good idea.

I think we should also extend that a little bit within our own sphere because it struck me this morning as we were hearing about the number of organs versus the number of transplants, that there's something implicitly nonequal about those two statistics.  The yearly transplants are not the same as the number of people on the transplant list.  Those people live for years.  So we need to do a sort of statistical analysis that show how many people really are not receiving organs who rightly could receive them.  Obviously, the — I think that's maybe obvious what I just said.  It's just simply a matter of kind of a magic of numbers.  If somebody is on the list for five years, you don't compare the yearly rate of donation to the actual need on the year-to-year basis.

Second, it would be useful if we're going to do this kind of inquiry to request perhaps for the organized bodies some kind of an analysis of outcomes, true added years and how they relate to the age of donor and recipient and I think this isn't a very popular comment to make because I don't want to dissuade anybody from donating if it's a positive thing to do.

But I think in all honesty we have to ask ourselves the question of: Are there any adverse outcomes?  We've heard a little bit about that in previous presentations, but let's be honest about it.  You have two kidneys.  Why do you have two kidneys?  Is it because people historically or all antecedent animals had some ongoing kidney damage from infections?  We now have antibiotics.  We have probably much more healthy kidneys at 50 years old than in people in the past who were not treated for a urinary tract infections for example.

But we should ask ourselves and we should all honestly look if there are any downsides before we make any recommendations.  That should be an honest part of our inquiry.  Does donation at once involve some risk to the individual who makes the donation and that wouldn't necessarily preclude it?  It might actually increase the dignity of the donation and the depth of the gift, but we should admit that.

And finally, we should explore more of what Eric was mentioning in the positive outcomes and somebody should do some kind of analysis on that as part of the scope of our inquiry.  Because if it really is a really deep engagement of another possibility like an invitation not an obligation, it might be a very positive invitation to our civilization.  But let's not start with the assumption that there are superfluous parts that are just there that we don't really need. It might be a genuine sacrificial gift, a very high invitation, to our deepest humanity.


DR. CARSON:   First, I would like to thank Dr. Foster for putting the salary of neurosurgeons into the proper perspective.  You know as a surgeon I would like to say that certainly we're not terrified when we go into the operating room, but certainly there's a healthy respect for what's being undertaken and the degree of urgency of the situation I think plays into it.  If you're going in to do something that's lifesaving and there's no question about that, you're probably going to enter that perhaps with a little less trepidation than something that's questionable not only for ethical reasons, but for legal reasons.

But recognizing that surgery tends to be something that works very well for people, I don't particularly like surgery to be honest with you.  But it's something that the Lord gave me talent to do.  I don't like the sight of blood.  Some people find that very amazing.  They say, "You're a surgeon" and I just say, "Would you rather have a surgeon who likes to see blood?"

But the fact, the other thing, I wanted to bring into play here is there have been several mentions of paying people for the procurement of organs and of course, it's usually mentioned in a negative light, but I think we also need to recognize that this is not something that hasn't been done for a long period of time with blood transfusions.  We've been paying people for blood for a very long time.  We pay people for sperm donations.  These are things that in one case can be lifesaving and in another case life creating.  So there is certainly plenty of precedence for that.  It's not to say that it's right or wrong.  It's to say that we need to make sure that we keep all of these things in perspective.

CHAIRMAN PELLEGRINO:   Thank you very much.  Other comments.  I'm glad we're getting into the situation or giving us some advice here which is very helpful.  I can at least make this passing comment.  The intensity of the discussion almost answers some of the questions. 

PROFESSOR LAWLER:   According to this theory of surgeon terror and I agree you guys shouldn't be reading Kierkegaard or anything like that, but the most terrified surgeon should be the cosmetic, plastic surgeon because he in fact does no one any good.  Yet he's cutting on people.  Yet my limited experience, these are some of the happiest and self-confident people around, not to mention well paid or anything.

CHAIRMAN PELLEGRINO:   As long as we're talking about terror, I don't want you to exclude us internist either, risk out of everything.  Okay.  Sorry.  I keep forgetting.  (Turns microphone off.)  I very much appreciate any comments you want to make.

DR. FOSTER:  Since nobody else is, let me make one other comment in response to Floyd's issue of prevention which is a huge problem and as all of you know, but I just want to tell you, it's become a little more complicated and that has to do with the worldwide epidemic of obesity and its capacity to induce diabetes which is the leading cause of renal failure in the world and the interesting thing is that this whole epidemic does not require medicines, surgery, anything else.  It just requires eating fewer calories.  That's all.  I mean, Type II Diabetes is curable right now and you don't have to get pancreas transplants.  Yet the epidemic is hugely increasing in countries that you never thought to be able to see obesity, France and so forth.  It was just us and so forth.

So the problem is that Gazzaniga is going to hop all over me, but at least the people who are working on addiction that I know about now begin to talk about hedonic.  I think they also say hedonistic, but hedonic neurons where there's pleasure and fulfillment involved.  They're coupled with all of these things.  So you can't — I've talked to I can't tell you how many people who weigh 400 pounds and who have renal failure, early renal failure, and I say, "Miss So-And-So, if I were you I would have my mouth wired together and not eat another bite until I had lost 200 lbs.  You don't have to get back to normal weight.  You just have to do it."

So we have a problem there and it's not just because McDonald's is there.  It's not genetic in the sense.  It's too fast for genetics to be here.  So it's we just can't get people to quit smoking or to quit eating and so forth.  So it's going to be a real problem, but it's a little more complicated than that.  Although I should say that many of you know about new drugs like rimonabant.  Rimonabant binds the canniboid receptor I which is where marijuana hooks in, but we now know that there are normal canniboids.  The universe doesn't give us receptors so we can take opium, the opiate receptors.  It doesn't give us a canniboid receptor so you can smoke marijuana.

But one of the side effects we've known is  that the canniboid receptor then crosses over to the micro-opiode receptor.  It hooks in.  That's why it enhances the pain release with marijuana.  But if you block this, it must have some effect on the hedonic pathways because 25 percent of people who are smoking quit cold on this and there's a significant weight loss with that.  So there may be some possibility that the scientific approach would be a way that we could begin to bring this in an increase in fatty acid oxidation.  So we can't do it by what the self-responsibility should be to just cut down on what you eat, but we have to look at this and we usually treat lung cancers even though they're due to smoking.

Now here's the complication and it's really quite new.  The reason that obesity makes you  get diabetic if you have diabetes as a gene is that it gives you insulin resistance so insulin doesn't work.  All Type II patients have insulin resistance.  They have a high levels of insulin in the blood but it doesn't work because you have resistance and then if you become obese too, it moves the time.  That's why the leading cause of diabetes in pediatric practice now is Type II diabetes which didn't used to start until you were 40 years old and so forth.

Here's the problem.  Gerald Reaven at Stanford University was the one who described what's called a metabolic syndrome.  This is a syndrome that predisposes to diabetes associated with diabetes and so forth.  This obesity by the way is now the leading  cause of liver disease in the country, more than alcohol, more than anything else.  Fatty livers due to obesity is the leading cause just like it is leading to kidney failure with diabetes.

What Reaven has discovered is that 25 percent of us that are normal weight and have no diabetes have insulin resistance and he has now followed a group of these people for ten years.  They are normal people and they have the same increase in vascular disease, stroke and atherosclerosis as diabetics and so forth do.  So it gets more and more complicated.  We don't know what causes this, but even if we cut the weight loss down, it will help.  We still may have a problem with some of these other things going on.

Professors like to tell you about new stuff in science.  So I thought that that's not very well known.  There's a new paper in cell about this, about the insulin resistance, in and of itself being the cause of vascular disease that goes on.  I hope that's clear.

CHAIRMAN PELLEGRINO:   Professor Schneider.

PROFESSOR SCHNEIDER:  And before we leave that topic because I've spent a good deal of time with kidney patients, I do want to say that there are a lot of them who have inherited their disease and got it for reasons that have absolutely nothing to do with the virtue of their behavior.  But I wanted to obey the request to comment on this as a topic and I'm not quite sure how to do that because it's not clear to me what you exclude as another topic by choosing this as a topic and I certainly can think of a number of topics that are equally interesting. But it's obviously a topic of social importance that is directly relevant to the kinds of questions that we're talking about.

I would like to say two things.  First, we are not the first people to think about this.  Socially, we have not leapt into this unthinkingly.  We have actually moved very slowly in making transplants more available and in assaying small experiments, very incremental kinds of experiments to try to increase the pool and each step has been taken  I think actually quite thoughtfully.  So I hope that we don't neglect in our anxiety to think about things basically, the considerable amount of social thought that has already gone into this.

Second, I confess that I am still failing and I have no doubt that it's my failure and not the failure of my preceptors to understand all of the reasons that it is disturbing to cut into a healthy body in order to help another person.  I sometimes wonder whether it helps to think in the language of all things of economics.  If you have interdependent utility functions with somebody else, it's perfectly easy to understand why cutting into your body to help somebody else is no big deal and the idea that it's possible to understand it if you're doing it for somebody you love, but almost inhuman to quote from one of the papers "to do it for somebody whom you don't know" just reminds me of what I read some years ago about the Good Samaritan and the question who was your neighbor.

So to come back to where I started the discussion off, I am still very much at a loss, while granting that it's important to ask these questions, I'm still very much at a loss to understand what it is particularly about the donation of your organs that is in some way interfering with your integrity as a person and with the function that doctors ought to have.


MR. COHEN: I wonder if I might quickly try again to respond first just very briefly on the issue of the almost inhuman.  That cuts in both directions.  There is both better than human and then less than.  I mean there's a certain sense in which giving an organ to a stranger simply as an act of charity or altruism or even love is in some sense better than perhaps most of us are willing to do.  But there's also something strange about it and that's why people who are purely anonymous or altruistic donors go through a kind of rigorous psychological screening in fact to decide to whether this is a freely made decision and a decision that is truly informed.

But on the deeper question about how do we understand the meaning of doing surgery on the healthy, introducing now that it's a theory of terrified physicians.  But presumably we have to think about the acceptable level of risk.  Right?  In the kidney case, it seems pretty clear to me that this is an acceptable level of risk.  There are some outcomes that are bad.  There's a fairly low, but a real risk of mortality for the healthy donor.  But it seems to me both morally justifiable and in many cases morally heroic to do the surgery that removes an organ, a kidney, from the living donor to put it into someone who is sick and whose very life hangs in the balance.

At the other extreme, it would be the case of the parent who wants to donate a heart to his dying child.  One can understand the nobility of the motive and the desire for the parent to save the child and perhaps give the rest of his organs to other people who might be saved.  You could save many lives at the cost of one, but obviously no surgeon would even contemplate performing such a surgery.

Somewhere in the middle we have to decide what is the acceptable level of risk.  I think that's something that probably has to be made a judgment case by case, family by family, doctor by doctor.  I don't think there's one formula.  But again, I don't think we should ignore the moral dilemma here, the dilemma that exists even in the low risk cases.  It gets even more and more complicated for us as you go from removing a kidney to removing a part of the liver and I think we can't ignore the moral difference in that kind of surgery compared to other kinds of surgeries where the patient is sick and the medical intervention is the best effort to try to help them.

CHAIRMAN PELLEGRINO:   Thank you.  I think we are at the time for the break.

PROFESSOR McHUGH:  You just asked that we should all volunteer.  Now you're going to shut me off.  You're a tough chairman.

CHAIRMAN PELLEGRINO:   We'll watch you, Paul.

PROFESSOR McHUGH:   Anyway, let me just make the simplest points that I had made somewhat before that first of all our issues of getting the organs and getting them from both loved ones and from the deceased will really depend upon doctors themselves being more engaged on both the donor and the recipient  or it's going to be a cash market thing.  Those are the two things that are going to go if human organs are going to be the only way.  And I said it the last time.  I believe that the major solution here ultimately is going to be xenotransplantation and we need to know where we are in that arena.

I absolutely agree though with what was said by Gil and what was said by Eric and also it was said by Peter that I don't want to find us in a situation where poor people are exploited and are forced into it and led to believe that they must do this as an act of desperation.  That's not a new idea by the way.  In literature, that's spelled out. I think Les Miserables has a description of that similarly not with anything so serious as an organ transplant.

So I think that one of the places that this Council should be since it's discussed the importance of research both in what Floyd says going backwards.  I think it should also talk about the very great importance of cultivating xenotransplants as the solution really for these things.

CHAIRMAN PELLEGRINO:   I think we're at the point now of our break.  Return at 3:45 p.m.  Again, a comment.  Almost everybody has commented on this and again we'll take that under serious consideration.  Off the record.

(Whereupon, at 5:36 p.m, the above-entitled matter concluded.)

  - The President's Council on Bioethics -  
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