Meeting Transcript
April 20, 2006

COUNCIL MEMBERS PRESENT

Edmund Pellegrino, M.D., Chairman
Georgetown University

Floyd E. Bloom, M.D.
Scripps Research Institute

Nicholas Eberstadt, Ph.D.
American Enterprise Insitute

Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School

Michael S. Gazzaniga, Ph.D.
Dartmouth College

Robert P. George, D.Phil., J.D.
Princeton University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Leon. R. Kass, M.D.
University of Chicago

Peter A. Lawler, Ph.D.
Berry College

Paul McHugh, M.D.
Johns Hopkins University School of Medicine

Gilbert C. Meilaender, Ph.D.
Valparaiso University

Diana J. Schaub, Ph.D.
Loyola College

INDEX

• Welcome and Announcements
  
• Session 1: Organ Procurement and Transplantation
  
• Session 2: Organ Procurement and Transplantation
  
• Session 3: Children and Clinical Research
  
• Session 4: Children and Clinical Research

   

WELCOME

CHAIRMAN PELLEGRINO:  Welcome to the 24th meeting of the President's Council.  We're delighted to have you here, and I want to welcome members of the public as well, particularly Rachel Fink from Mount Holyoke and her students.  Welcome.  It's good to have you with us.

I want to recognize officially the presence of Dr. Dan Davis, the Council's Executive Director and the Designated Federal Officer.  His presence gives us a legal standing of some kind.  I'm not sure, Dan, just how secure it is, but —

DR. DAVIS:  Rather flimsy, I'm sure, but —

CHAIRMAN PELLEGRINO:  Well, it's good to have you here.  Thank you very much.

I also have the great pleasure this morning to introduce two new members of the Council.  In keeping with our customary approach, we do not give long and lengthy biographical recitations, but Dr. Bloom, Floyd Bloom, to my right is from California, and he's Professor Emeritus in the Molecular Integrative Neuroscience Department of the Scripps Research Institute and Chairman of Neurome, Incorporated.

I also want to welcome Dr. Nicholas Eberstadt on my left, of the District of Columbia, who holds the Henry Wendt Chair in Political Economy at the American Enterprise Institute.

Both of these gentlemen have, as you would anticipate, impressive curricula.  They've contributed to their fields.  We're delighted to have them with us.  Their full resumes you will find on the Council's Website, and I urge you to look at them and to acquaint yourself with some of their accomplishments.

This morning we will be picking up a new topic for the Council.  This afternoon and tomorrow we will move to a continuation of the discussion we've been having on children and children's research.  This morning's sessions will focus on the discussion of organ procurement and transplantation.

SESSION 1: ORGAN PROCUREMENT AND TRANSPLANTATION

And our first speaker will be Robert Veatch, whose name will be known, I know, to many of you, a colleague and friend of mine, and again, we will keep our introduction extremely brief.  So brief that I will give you only his present title:  Kennedy Institute of Ethics and Department of Philosophy at Georgetown, as well, who has had a long and very distinguished experience in the field of organ donation.

Dr. Veatch.

DR. VEATCH:  Thank you very much. 

It's my assigned task to introduce and provide an overview of some of the ethical issues in organ transplantation.  The subject of organ transplantation ethics divides very nicely into two major categories:  the ethics of the allocation of organs and the ethics of procurement.

The allocation issues are relatively well settled today, and I will say very little about them, spending most of my time on the procurement topic.  Legally and morally in the United States, when it comes to allocation, there is a formal commitment to simultaneously consider the moral duty of maximizing benefit from the organ system and allocating organs fairly.

The UNOS Ethics Committee, in fact, has adopted a position of requiring that these be given equal consideration.

There's one new controversy that's worth mentioning before we turn to the subject of procurement.  Increasingly, the Web has begun to play a role in allocation issues.  There are a number of Websites.  I provide here in this slide the front page of one of these Websites called matchingdonors.com.  It is a device where people needing organs are allowed to register and make their case for a donation of an organ.

You can see that there's a kind of commercial overlay, free air fares available for all matchingdonors.com patients and donors.  In this Website, there is a listing of the various people who are seeking organs for procurement.  For a rather substantial fee, people are allowed to make their case for a donation.  This is an example of such a site.  A picture is provided together with a rather attractive slogan, "I want my dad back."

You can see in the text — sorry — starting down here, "I am writing this on behalf of my very dear father.  It has been over three years on dialysis for my dad now."

Further down in the text, "my children in the picture want their Papa back."  Down in the next paragraph, "ironically I have worked as a transplant nurse for over ten years and have helped hundreds of people of all ages get their life saving kidney transplant."

The issue raised by this kind of a site is whether the private communication, a Wild West of the Web, makes organ procurement unseemly.  I must say because my name is somehow associated with transplant, I was solicited by this Website wanting to know if I would like to advertise for patients for me to do transplants on patients on this site.

I indicated that since I'm not a surgeon I probably should not advertise for patients in the way they suggested.  This, combined with the fees involved, raises questions about whether these Website are distorting the allocation process.

If you ask the question how does one obtain organs, through this Website, we're either getting altruistic, nondirected stranger donations that already would have occurred, and they're being diverted to the people who can make their best case, or what may turn out to be more likely, we're recruiting new donors who had not otherwise considered donating to strangers.

There are issues here of whether the fair allocation system is being circumvented.  Notice that it was a transplant nurse who had the savvy, the knowledge of this site to make the pitch.  It takes someone with knowledge of computers and Websites, as well as the funds to make this kind of appeal.

UNOS has said that it will not explicitly oppose this kind of recruitment.  I think the question is whether the government ought to be concerned about the distortion of the allocation formula as a result of these devices.

The allocation formula is a very sophisticated, well worked out device that considers many complex factors, and this may end up short circuiting some of that allocation commitment.

Let me turn to organ procurement where, as I've said, I think most of the action will be with regard to the ethics of transplant.  The story is rather well know.  We have seen over the last ten or 15 years a nice, slow, steady increase in the number of donors that we have obtained annually.

We have, however, seen a dramatic rise in the listing of persons for organs, and it's clear that the situation is getting worse and worse.  The result is a steady increase in waiting time so that now the mean waiting time is up around 1,100 days.

The implications of all of this is that in the last decade, 59,000 Americans have died waiting on the waiting list for an organ transplant.  At the same time, there are approximately 60,000 cases where there has been a potentially medically suitable donor that has been lost through failure to obtain the consent and obtain the organs in a timely fashion.

So that even at the rate of one organ per donor, we would have been able to provide transplants for those 59,000.  Not all of them obviously would have survived with a transplant, but we're talking about a substantial number of people who are dying for lack of a organ.

To make the story more complicated, many people have no principled objection to having their organs procured following their death, but they've simply never made the commitment.  It's a hard subject to think about, and many people don't even write economic wills.  This is not a high priority for many people.

So that we've got a situation where many lives are hanging in the balance, and yet there is no strong motivating force to get people to donate.

Furthermore, if someone dies and is a suitable donor, if that individual has not expressed a commitment to donation, there is a resistance among the family for making the commitment to donate the organ.

Realizing that the situation is getting progressively worse, there is increasing attention to what I think here in the Washington area it's appropriate to use the local jargon.  So I will refer to it as the "nuclear option."  The nuclear option would be to abandon the donation model that our country has been committed to since the 1980s and go to something that is sometimes boldly called "organ conscription."  That's the language that Aaron Spital, a well known physician in the field of transplant is using.

It's really just the old organ salvaging scheme in the late 1960s and early '70s.  We talked about routine salvaging of organs.  That is a policy where organs would be routinely procured unless someone registered an objection.

Now, there's an empirical debate still about whether this would increase the organ supply.  There's some reason to fear that routine salvaging would produce a backlash and some people would refuse to donate who otherwise might be willing to, but I think it's plausible based on experience  in other countries that a conscription model would, in fact, increase the supply.

The moral issue is whether we as a nation are ready morally to abandon the individualism that has characterized this country.  There are basically two ways you can think about the relationship of the individual and the state, and some nations have chosen to view the individual as a source of organs unless an objection is registered.

In general, the Catholic countries of Southern Europe, the socialist Scandinavian countries, and some Asian countries have gone to a model that legally authorizes procurement without an explicit consent, usually with an opt out provision for those to register their objection if they strongly object.

The alternative is the donation model, which is adopted in the Anglo-Saxon countries of Germany, the Netherlands, Great Britain, the United States, Canada, where we would require some explicit donation.

Now, we should recognize that in the U.S. we're not entirely committed to the priority of the individual.  We have military conscription, and in an area closer to what we're talking about, we have laws that authorize medical examiner autopsy without the consent of the deceased or the family.

So with good reason, we have considered a kind of conscription model, but we're very hesitant to abandon the language of donation.  I am struck by the fact that presumed consent is the euphemism that is often used for conscription.  I'm open to moral discussion about conscription.  I think countries that have adopted it are acting in good faith, and they're not absolutely outlandish policies.

I'm militantly opposed to taking conscription and applying the euphemism that there is a presumed consent.   The fact of the matter is empirically we know about half the population would not consent if asked.  That's true in countries around the world.

To claim you can presume consent when we have empirical evidence that a substantial number of people would not consent is at best a euphemism and at worse it's a conscious effort to try to hold onto the consent in donation model when, in fact, there is no consent and no basis for assuming consent.

In fact, no country in the world actually has a presumed consent law, and if you're going to talk about this in any further report, I would urge you to carefully distinguish between presuming consent and simply biting the bullet and saying we're going to have a conscription policy.

Let me raise for you six less drastic options before we contemplate the nuclear option.  I raise these because I think they are issues of current discussion or might force us to begin thinking about some future alternatives that have not yet hit the agenda.

I'll say a word about required response, organ priority, market experiments, living donor exchanges, what I call the tainted organs problem, and finally, the most controversial, challenging the dead donor rule.  Let me comment about each of these.

The first of the three that I list here potentially could double the number of organs.  They are all models that would stimulate people to think about donation, and if they're willing to donate, to actually make the commitment.

Realistically we could go from roughly 50 percent authorization rates for procurement, I suspect, up to about 75 percent by simply developing mechanisms to encourage people who are in principle willing to donate to make the commitment and do so without an undue inducement.

The last three options on this list could produce substantially more organs, somewhere between roughly a 200 percent and a 400 percent increase, and may even approach the number of organs that we need to stabilize the waiting list or even reduce it.  The question is how far can we work our way down this list without ethical offense.

Let me say a word first about required response or mandated choice.  We now have laws that require requests of families for potential donors.  A hospital is legally obliged to make the request for a donation.

We're also seen the beginning of the emergency of state level registries often related to Department of Motor Vehicles driver's license applications.  What is being discussed and I think is worthy of consideration is going one step further and actually requiring a response to the donation question, not requiring that people donate, but simply saying this is a critical life saving decision and morally you are obliged to think about the problem to the point that you make a choice either in favor or against donation.  A wise strategy would present a third option so someone could say they don't know what their decision is, in which case we would default to familial decisions.

The Department of Motor Vehicles' mechanism is, I think, a particularly bad way of developing these registries.  There are 50 potential states so that it's all decentralized.  I do almost all of my driving in the State of Virginia, but I'm not a legal resident of Virginia, and when I tried to register for the Virginia registry, I was told they didn't want my organs because I was not a legal resident of Virginia, even though when I have my accident I will almost certainly end up in a Virginia hospital.

Furthermore, the interaction with the Department of Motor Vehicles is mercifully infrequent.  It's only every five or seven years.  So it doesn't give you an opportunity to change your mind.

Most critically, from my experience, many of the employees of the Department of Motor Vehicle may not be properly motivated to initiate a conversation about the ethics of organ procurement.  So I think that's a bad idea.

I would prefer some national registry so that everybody is in the same database.  My personal preference would be to attach a donation question to the income tax return.  It would reach every adult or almost every adult in the country.  The IRS is pretty good at rules of confidentiality.  They could download the responses, ship them to UNOS, and we'd have a national database that's renewed every year.  So that would be my personal preference, but some national database seems critical.

I think the Council ought to endorse a national registry.

Let me move on to item number two, organ priority.  There are various strategies for rewarding those who have donated by giving bonus points should those who have donated at some point need an organ themselves.

We already have bonus points for those who are living donors of kidneys.  So the legal issue have been settled.  This is not an undue inducement.  It's not valuable consideration that is prohibited by law.  I would like to see us explore ways of giving a small token, a bonus point or two for anyone who has signed a donor cards and had that donor card for, say, two years.  That would avoid people signing the card just at the point they find out they need an organ for transplant.

I would also like to explore, although it raises some complex technical issues, whether we could give bonus points to family members who donate their loved one's organs after the loved one is deceased.  I think the Council ought to endorse in principle the notion of bonus points and explore ways that the model can be expanded.

The third possibility is to begin experiments in market mechanisms.  We've got this terrible problem of a lot of people who in principle are willing to donate, but they just have never made the donation decision.  They haven't taken the time to think about it.

There are market mechanisms that have been on the table for many years.  They have never been taken terribly seriously until recently.  As those two curves between donation and listing get further and further apart, there are more serious proposals.

Now, there have always been those on the libertarian side who have thought markets are perfectly legitimate.  They're a reasonable way of increasing the supply of organs.  The resistance has always come from those who I would describe as being on the left who are concerned that any market, any payment for any step in the process, whether it's donation or actually providing the organ, will discriminate against the poor.

The concern for the poor is that offering financial incentives would be coercive.  I'm pretty sure that coercion is not the right term.  Coercion is, if you talk to philosophers, a term for forcible removal of options.

What we have here is the complex problem of the ethics of irresistible offers.  Offering large financial incentives to provide organs might turn out to be irresistible in some cases, particularly for the poor.

Now, the ethical problem for the Council to deliberate on is whether an irresistible offer is always immoral.  It's pretty clear to me that it's not always immoral.  I consider the invitation to be with you this morning an irresistible offer. It seemed like a wonderful opportunity, and quite frankly, I couldn't turn it down, and yet I don't consider any of you immoral for having made the offer to me.

The real problem with irresistible offers is exploitation.  Exploitation involves a rather complicated set of issues, and the Council may want to spend some time deliberating on exactly what constitutes unethical exploitation.

The exploiter needs to be able to offer some other options in order to exploit the one to whom an offer is made, but if a kidney or a heart surgeon offers a heart transplant to a patient telling the patient the alternative is death, that would strike me as for many people an irresistible offer, and yet a morally legitimate offer precisely because the surgeon has no alternative to offer to that individual.

The problem with financial incentives, if they come from the government, is that the government does have an alternative.  It could have adopted an decent minimum wage or compensation so that no one is so deprived of the basic necessities that they find such an offer irresistible.

In 1983, I testified in Congress saying I opposed markets at the time because of the irresistible offer problem.  I said if in 20 years or so we have not developed ways of responding to the basic needs of the poorest of our citizens we should revisit this question.

True to my word, I did revisit it 20 years later, and I've come reluctantly to the conclusion that it's time that we begin experimenting with very limited market mechanisms to encourage people to get over the resistance of thinking about this question.

Now, I've covered the three topics that I think are relatively noncontroversial and worthy of the Council's attention.  Let me turn to three more in the time that remains that I think are more complex questions and maybe questions you have not thought about.

There are many people needing a kidney who have a willing living donor.  Some of those willing living donors turn out to be incompatible with their planned recipient.  So they are unable to make a living donation, and the recipient has to go on the waiting list and wait five years for an organ.

Some of these incompatibilities are A-B-O blood incompatibilities.  Some of them are positive antigen cross-matches.  There may be other reasons such as size.

If there is a blood group O potential family donor with a blood group O recipient, the blood group is not a problem.  There may still be a positive cross-match.  We could conclude that that's an incompatibility and this recipient has to go on the cadaver waiting list.

But as an alternative, we could have this O donor donate to the cadaver donor pool and in the process move the recipient up to get the next negative cross-match blood group O deceased donor.

This turns out to be ethically relatively noncontroversial.  It is a policy we've adopted here in the Washington area and in a number of other jurisdictions.  So the idea of living donor-cadaver exchanges is something that is very much on the agenda today.

Let's move to the next problem, however.  There may be a family member willing to donate who is an A or a B or an AB blood type and their recipient is an O.  That is an incompatible donation, and we could, following the model I just described, have this AB or A or B donor donate to the cadaver pool and in exchange for that, the next O blood group patient who donates to the cadaver pool — sorry — would then have that organ go to this original recipient who is O.

This presents an interesting ethical problem.  This kind of an exchange has the effect of taking this person off the cadaver list and producing one more living donor transplant.  So the effect is an overall shortening of the waiting list.  That's a very nice thing.

The problem is every organ that comes into the list is non-O, and every organ that comes out of the list is an O organ.  O candidates are among those who have the longest waiting times as we stand today.  So it presents a classical Rawlsian fairness problem.  Utilitarians would generally accept the harm to the Os on the list — they have to wait longer — in order to get the overall benefit of an overall shortening of the list.

Justice advocates, however, have adopted the view that this particular kind of an exchange is ethically unfair even though it is utility maximizing because it discriminates against Os on the waiting list who are unable to bring a familial donor and make such an exchange.

Now, having confronted this, there has been discussion in the literature in the last year or so about ways to get around this injustice.  One possibility would be to get the consent of the Os on the waiting list to wait a little longer for the good of the overall community. 

Lainie Ross, a physician at the University of Chicago, and I have both pursued this question, and she actually was part of a group that did an empirical study that founded 59 percent of the people on the waiting list would have been willing to wait a bit longer, but 59 percent is really not sufficient to justify the injustice to those who are already waiting the longest and would have to wait even longer.

The justification, if there is one, requires going back to our national commitment to balance utility and justice and explicitly make a commitment that we will have a slightly unjust allocation system in order to increase the number of donations.

I, as a way of proposing a temporary compromise, have urged the Washington Regional Transplant Consortium to cap the extra wait time for the Os on the list at 30 days predicted extra wait time.

But another alternative is to reduce the wait time for the O blood group by following a couple of strategies.  One of them is to further some experiments in incompatible direct living donor exchange.  There are groups, including at Johns Hopkins and in Japan, that are ignoring this block and are doing this exchange with some technological ways of attempting to protect the recipient from the blood incompatibility.

I doubt that that's going to develop until we develop more technology to overcome that incompatibility.  The strategy that I think is interesting is something I call a voluntary paired donation.  It was the subject of my editorial in the January American Journal of Transplant.  We have many cases, by my calculation 1,300 cases a year in the United States, of an O donor family member who's willing to donate with a non-O recipient.

Now, this is a straightforward compatible donation, and they take place every day in the United States.  We never hear about them because this is blood compatible and presents no problem.

However, looking at it from a systems point of view, you could describe this as the squandering of the O organ.  We're putting an O organ, a valuable resource, into someone who doesn't need an O organ.  We could find another pair, the pair I talked about earlier, of a non-O donor with an O recipient and pair these two people up.

This second group, the second pair, is not compatible, but what we could do is get this O donor to voluntarily give his organ to this O recipient in exchange for which the non-O family donor would give to this organ and that produces one extra living donation per paired exchange.  If there is a potential of 1,300 of these in the United States, that's 1,300 people a year of O blood type who could be removed from the cadaveric wait list.  The result would be two compatible transplants rather than one.

Now, people like Frank Delmonico will claim who as an O blood type donor would go through this when they could just give the organ to their spouse or their loved one.  My suggestion is that there are advantages all around, and that rational people when they think about it will see the wisdom of this not only in terms of contributing to the community.  That's obvious. 

It's also obvious that this person gains because he gets a living organ rather than a cadaveric organ.

What may not be obvious is that this individual here can also gain.  He can gain by getting a younger donor, a donor with better kidney function or a better HLA match.  So it's not just an appeal to the altruism of this pair.  It may be in most of the cases of the 1,300 possible that we could arrange this scheme so that it is simultaneously in the interest of both of these recipients to be involved.

I think the Council should endorse UNOS development of this voluntary living donor matching program.

Let me move on to still another, the fifth of the schemes I wanted to mention to you, the scheme that falls under the general category of medically suitable expanded criteria.  Some have suggested that there are many organs out there that are classified as medically unsuitable that, in fact, could be procured.  Approximately three-fourths of all referrals to OPOs for potential donors are classified as medically unsuitable for one of two reasons.  The donor is believed to have some infectious disease, some disease that might be transmitted or — and this is kind of embarrassing — it turns out the donor is not yet dead.

We get referrals for organ donation, and when our team goes in and looks at the donor, it turns out the donor isn't brain dead, may be very close to being brain dead, but not brain dead.  So in order to avoid embarrassing the physician who referred that patient, we use the euphemism of saying that donor is medically unsuitable.  The reason he's medically unsuitable is not that he's unhealthy.  It's that he's not dead yet, and we have a policy called the dead donor rule that we don't take organs from donors who are not deceased.

For example, we get referrals of patients who have high risk lifestyles, IV drug users or gay lifestyle persons, and historically we rejected those donors right off the top on the grounds that even if they test negative for HIV, they may not have seroconverted and there is a risk of transmission.

Now, the risk is very small, but it's real.  We have begun asking the question of those on the waiting list:  if such a potential donor became available, would you be willing to take that risk and get an organ now rather than waiting until your turn comes up for an organ without this risk?

Now, some people on the waiting list are near death.   So, in effect, the choice being presented is would you rather die or receive an organ that tests negative, but poses some HIV risk?

Surgeons don't like to think these thoughts because it runs some risk of putting HIV into a patient without HIV, but we are now coding the waiting list so that people who are willing to consider such organs would have an opportunity to do so.

To stretch your thinking, consider that we get an organ that tests positive from a deceased potential donor.  We by policy have HIV positive persons on the wait list for transplant.  Could we even take the next step of offering a known HIV positive organ to an HIV positive recipient, explaining that there's a risk of transmitting maybe a different strain of the virus and so forth, but could we make that offer recognizing people would have the right to decline if they didn't want it.

And if you followed that step in this progression, think of the case of an HIV negative person on the wait list in liver failure, Status I, has a week to live, isn't getting an organ.  Do we dare ask the question of whether that person would be willing to take the HIV positive organ, perfused as well as possible, but clearly not being able to establish that it's HIV free, and put that intentionally into a near death HIV negative recipient?

I think the Council should endorse coding of the wait list so that we have an indication of which of these tainted organs persons are willing to accept.

It turns out to be a problem not just for kidney or not just for livers and hearts, but for kidneys as well.  We're increasingly realizing that kidney transplant is a lifesaving intervention.  The deaths per thousand for patients on the wait list you can see is about 50 percent higher than for persons getting a transplant.  So even for kidney this is a potentially lifesaving intervention.

I have one last suggestion.  If this isn't controversial enough to stimulate discussion among the Council, let me move to my sixth and final suggestion.

Many people, thousands of people each year, are medically unsuitable because the potential donor is not dead.  Now, some of these people are candidates for a planned cardiac arrest.  That is a decision to withdraw life support because the individual, even though he's not dead, may be permanently comatose, and the person could become a donor after cardiac death.  That's being done here in Washington.  Ten percent of our donors are donations after planned cardiac death.

The more controversial and interesting problem is whether we as a nation should consider donation without brain death or cardiac death, that is, people who are legally today alive.  To use another language, can we make exceptions to the dead donor rule?

In particular, there is beginning to be active discussion about procuring organs from those who are permanently comatose or permanently vegetative, but not legally dead by whole brain criteria. 

Now, it turns out that there are two different strategies one might use.  One might keep the existing definition of death and legislate exceptions to the dead donor rule, saying that you can't procure an organ from somebody unless they're dead, unless they are permanently comatose or permanently vegetative, and of course have consented to the procurement in advance.

Only explicit donors would have their organs procured under this scheme.  That's one possibility.  The other possibility is to further amend the definition of death to move to what's called a higher brain definition that would call people dead in our nation who have not literally lost every function of the entire brain.

As far as I know, no commentators have today that are commenting on death today really literally believe in a whole brain definition of death.  It means every last function, every reflex through the brain stem has to be gone before death is pronounced.

If you read the literature, even the defenders of the present law acknowledge that there have to be exceptions for what one person has called an insignificant nest of cells.

So we could shift to a new definition of death that would classify some of these permanently comatose persons as dead.  In fact, a large group of scholars now in rejecting a whole brain definition has either said go back to a cardiac definition and then write in some exceptions to the dead donor rule or, alternatively, go to a higher brain definition where some of these patients would be legally classified as dead.

The literature among the specialists in the field suggests that this is a plausible option, but would the people, the ordinary citizen, accept it?  Laura Siminoff, Stewart Youngner, and their group at Case Western Reserve has recently conducted a study looking at the opinions of ordinary citizens in the State of Ohio.  The results are really quite provocative.

They studied 1,351 citizens, ordinary people through polling mechanisms.  These are top flight, sophisticated, empirical scientists.  They presented three scenarios, pretesting to make sure that the ordinary citizen understood the scenario, one involving whole brain dead persons, people legally dead today in Ohio and every other state in the Union; a second scenario involving a permanently comatose patient who is not legally brain dead; and a third scenario involving a permanent vegetative state patient like Karen Quinlan or Terri Schiavo, who obviously is not legally dead today.

In their study they asked:  would you consider each of these three patients dead?  For the whole brain case, 1,164 said they're dead.  That's 86 percent.  That more or less squares with our knowledge that 10 or 15 percent of the population now have not bought brain-oriented death pronouncement.

However, what they also found was 57 percent considered the person in permanent coma to be dead, and 34 percent considered the vegetative state person dead.  Well, so far that more or less reflects public opinion about brain death, with almost everybody accepting whole brain and lesser percentages accepting these other options.

They then asked the question:  would you procure organs from these three cases?  And as you can see, almost everybody who thinks the person is dead ends up favoring organ procurement.  There are a handful of people here who think the patient is dead but wouldn't favor procurement for whatever religious or philosophical reasons, and this holds true right across.  They're almost identical responses.

Now, here is where it gets interesting.  They then went to those who said these patients were alive and asked even though they're alive, would you procure organs, and you see that there is another group of people, ordinary citizens who don't have the sophisticated linguistic analysis to sort this out.  They say these people are alive, but it's okay to procure their organs.

Now, if you were to add those two groups together, you get in the case of brain death 93 percent who say it's okay to procure organs.  In the case of permanent coma, you get one way or another 74 percent who would procure organs, and even in the case of permanent vegetative state, you get 55 percent who would procure organs.

I suggest that it's time to consider the enormous lifesaving potential of opening the question about going to a higher brain definition of death or, alternatively, making exceptions to the dead donor rule.

The majority of ordinary citizens seem already to be in favor at least in the Midwestern State of Ohio.

Let me quickly summarize and I'll be done.  Six schemes that I mentioned, each of which leads me to make a recommendation to you folks.  I think the Council should endorse a national registry.  I think the Council should endorse bonus points for those who have donated; should endorse limited market experiments to sort out whether, in fact, this would get people over the resistance to being willing to donate.

And finally, continuing the summary, I believe the Council should endorse UNOS development of a living donor matching program, such as the one I described, particularly the one with the high payoff, the voluntary exchange from familial O donors.

I think the Council should endorse coding of the wait list for willingness to accept organs posing some level of disease risk, and you can talk about how far down that line you want to go with donors that have either malignancies or viral infectious diseases.

And finally, the Council should initiate a study of organ procurement from those who would be dead by higher brain definition of death, but are not dead under the current legal definition.

With that, let me stop and I look forward to any questions or discussion that might result.

Thank you very much.

(Applause.)

CHAIRMAN PELLEGRINO:  Thank you very much, Dr. Veatch, for a very direct, clear, highly provocative presentation of the possibilities and the ethical issues that go with it.  The full range, I suspect, has been presented before us with specific recommendations.

I now open up the subject for discussion by the members of the Council.

DR. FOSTER: Mr. Chairman, I'll ask the first question.

Dr. Veatch, in reading your paper — and maybe this is for the next session, and maybe it's covered in one of the six things — but I had anticipated that you would also address the issue that you've thought about of direct cash payments for the donation of organs.  Now, if you think that's going to come up in the next session I'll hold the question, but if it's to the next session, then I would hope you would also add your comments at that point.

DR. VEATCH:  Yes, my understanding is it will come up in the next session.

I've tried to adopt a very cautious, middle of the road approach.  Historically I resisted all market mechanisms because of the risk of injustice.  I think we've waited long enough.  There are too many people dying.  I think it's time to begin limited experiments with cash payments.

These would be cash payments either for donation after death, where payment would go to the estate of $1,000 or so, an enormous money saving proposition.  So the money is not an issue.  The issue is the ethics of that.

I think we're ready for a limited experiment, perhaps in a single state like Pennsylvania that has shown an inclination.

I'm willing to discuss cash payments in the matchingdonor.com kind of model for living donation of kidneys.  Iran has adopted that policy and completely removed their waiting list for kidneys.

Now, our nation may not consider Iran as the model that we want to follow, but it's interesting to see what the result was at least in that culture and in some of the other cultures that have gone to cash payment.

I'm nervous about it.  I think the way to go is very limited experiments before we decide whether it really has discriminatory effects.

DR. FOSTER: Well, I'll probably wait until the next thing, but I myself am rather skeptical that either any of these six things alone or combined can really do anything about the curves that are going on.  I mean, if you really want to be serious about having people waiting for five years for a kidney, which is what it is in Dallas, and so forth, if you really want to do something about it, and if you consider premature death, which is not going to happen with people who have money and so forth, but for the poor it is right now.

I work in a hospital that takes care of the poor.  We cannot get a liver transplant or a kidney transplant for many of our people who are new immigrants and so forth and so on.  That to me is a radical problem about fairness and justice and so forth.

I'm not very interested in some of the concerns of justice that others have brought out in a minor way.  I'm worried about people who every day have no hope of getting a kidney.  It seems to me that one ought to be more radical in terms of the solution.

There's a lot of money made in this business.  In Baylor Hospital, which is the biggest private hospital in Dallas, the most lucrative thing in the hospital is transplantation.  I mean, these are huge amounts of money, and we're arguing about you use $1,000.  I would say, you know, why not — I'm just talking about dead, you know — just enhancing the likelihood that a family to get the burial cost, let's say.  Maybe it costs $10,000 to bury somebody.  I don't know.  It's so tiny that that would likely do something about it.

Now, I will save the rest of it, but as  a person who works every day facing this problem, I'm not a transplant surgeon, you know.  I mean, it just kills me to have people just die right in front of me that we could save because we can't get an organ.  And I don't think that even 1,300 changing Os and so forth is going to do anything about it.  I think we have to do something radical about it.

But I'll wait will the next issue to comment on that.

DR. VEATCH:  My suggestion was that the combination of these six schemes has the potential of substantially changing that waiting list, but one of the six items is experiments with markets.

One last point.  I'm uncomfortable trying to dress up cash payments by giving them a rationale like paying burial costs.  If you follow through the logic if you pay the burial cost, the estate that normally pays the burial cost is that much larger, and it really amounts to a cash payment to the beneficiary of the estate.

I would prefer to call it that straight out rather than — there is a wonderful euphemism in the literature called rewarded gifting.  We will not pay you for your organ, but if you give us an organ, we will reward you with cash.

I think that comes powerfully close to a market mechanism, and I would prefer to just say we're paying people for their organs.

DR. FOSTER: Let me just clarify my thoughts are not — I read your paper about that.  I'm not interested in hiding this for anything.  I'm saying you have to pay UNOS for these things.  You know, they cost; you know, different places of the country you pay for these organs.  I simply say we're paying like everything else we do in the country for something at what it's worth and just call it that.  I'm not going to try to put it into a euphemism.  I didn't imply that at all.

I'm just straight up saying this is a matter  of solving a problem with money, and it will save money in the long run, apart from the humanitarian thing.  So I didn't want to get confused about trying to — I'm not an ethicist.  So I'm not trying to hide my thoughts there.

CHAIRMAN PELLEGRINO:  I have Dr. Meilaender and then Dr. Eberstadt.

DR. MEILAENDER: I want to try to ask a couple of questions that sort of move behind where you began, if I could because I almost feel as if I were entering the discussion too far along for me at least to think it through.  Because there just seem to be some issues that need sorting out that are kind of presupposed here.

For instance, a couple of times along the way you used language about encouraging people to overcome resistance to organ donation, but I need to know something more about the nature of the resistance in order to  know whether I want to encourage them to overcome it or whether encouraging them to overcome it would be corrupting them in some way.

I mean if it's just selfishment, that's one kind of resistance, but there may be other harder to articulate sorts of resistance, and so I'd like just to hear you reflect just a little bit on that.

A second thing.  You started with the nuclear option, as you called it, of conscription and then moved to some less drastic possibilities, but how exactly did you rank those lexically because several of the less drastic possibilities seemed more nuclear than conscription to me.  Challenging the dead donor rule, for instance.

So I mean, I just don't understand quite how that went.

And then third, and maybe most hard to reflect on and yet important, way back there somewhere underlying where you started are just questions about sort of what is an organ and what is a body and how are they related to each other, and is there some reason why organs shouldn't be for sale, for instance?  I mean, not everything is for sale.  How do I know?

I think public offices should not be for sale, and if we try to explain that, we have to think about what it is and so froth.  How do I know whether an organ is the sort of thing that should be for sale unless I think about kind of what it is in relation to a body?

Those are three examples of questions that seem to me sort of that come before where you started us, and I'd like to hear you just — and I know we don't have a lot of time — but just say a little bit about them if you would.

DR. VEATCH:  Yes.  In some ways my response to your third point is tied up with my response to your first, your questions about my reference to encouraging overcoming of resistance.

Let me make a distinction between resistance to thinking about the question of donation and resistance to donating.  I have enormous respect for someone who has thought through these issues and has decided that it's not appropriate to donate.  I'm more uncomfortable with the psychology of someone who says, "Well, this is an unpleasant thought about my distant future or my death, and it's just not something I want to think about right now."

I am committed to the view that each of us owes to our fellow members of the moral community at least enough to think about this question.  So when I talk about encouraging overcoming of resistance, my main focus in on about the 25 percent or so of potential medically suitable organs from people who in principle don't object to having their organs procured, but have never gone on record.

Lots of those organs are lost today because people have not thought about the question.  I believe that we're at a point where using small incentives like bonus points or even small payments to think about that question is not only morally legitimate, but morally imperative today, as long as we're going to stay in the donation model.

If we go to the conscription model, then the problem goes away.  I'm sufficiently committed to the donation model, the priority of the decision of the individual, that I don't want to take organs unless there is a gift of the organ.

But at the same time I think there is a moral obligation on members of the moral community to have thought about this problem and come to some conclusion.  The incentives that I have suggested are designed at least in part not to buy the organs but to stimulate people to think about whether they're willing to make the donation.

I suggested that conscription was the nuclear option in large part because I think it requires the most fundamental decision about the nature of the relation of the individual to the society, and going to conscription or routine salvaging or what's euphemistically called presumed consent requires a reversal of our traditional affirmation of the priority of the individual.

All of the six items I mention are less drastic in that sense, and some that sound most drastic, like procuring of tainted organs and changing the definition of death, I think are defensible on their own regardless of the implications for organ procurement. 

I think people should have a right to choose to be alive with a tainted organ rather than dead without one.  I think people should be allowed to choose a certain range of definitions of death based on their religious and philosophical belief systems.  I've held that for 30 years, well before anybody ever thought about this definition of death issue in the context of organ procurement.

CHAIRMAN PELLEGRINO:  I have four members of the Council who wish to comment, and it constrains me to make the comment also that the time is limited.  So if you can make it as concrete as possible it will be helpful.

I have Dr. Eberstadt and then Dr. Hurlbut, then Dr. Gomez-Lobo, and then Dr. McHugh.

DR. EBERSTADT:  Professor Veatch, what I think will be a quick question about your own thinking on financial incentives and organ procurement, I read your very interesting paper, and if I understand it correctly, your own thinking has been moved towards reconsideration due in part or largely by your judgment about the condition of the poor in the United States and what you see as our government's failure to deal with poverty in the U.S.

As it happens I'm doing a monograph right now on the poverty rate in the U.S., which I believe is an absolutely dreadful mismeasure of material poverty, and I try to make the case in this monograph that since 1983, when you testified before Congress, the material condition of the U.S. poor has actually dramatically increased in many different ways.

My monograph may or may not be convincing to any reader, but if we hypothesize that you were convinced by this set of arguments I made, would that be enough to make you reconsider your reconsideration of financial incentives?

DR. VEATCH:  I've said all along that financial incentives per se are not the problem.  The problem is developing financial incentives in a social context where some would be exploited because of their desperate poverty.

So if you tell me that you hypothesize this society where that dreadful level of poverty does not exist, where the exploitation would not occur because of that, then I'm much more open to financial payments than I otherwise would be.

I focus on this analysis.  I assume libertarians have always been satisfied with market mechanisms.  The political problem with markets has been the resistance from the egalitarian left, and I've said I was part of that egalitarian left leaning portion of the population, but we've waited long enough with the number of lives that are at stake, and we ought to cautiously begin experimenting.

CHAIRMAN PELLEGRINO:  Dr. Hurlbut.

DR. HURLBUT:  Well, picking up on that theme from a different angle, reading your paper and especially in the phrase where you speak of the poor being allowed to market the one valuable commodity they possess, it struck me as raising some fundamental questions that maybe we get on the table first.

First of all, it did strike me that I teach in a university and many of my students feel very poor.  So it raises an interesting question of who should be allowed to donate a kidney in the first place.

You mentioned that driver's license is the moment, and they do that in California, too, where you can indicate a willingness to donate.  They give licenses at 16.  Is that too young for somebody to decide?

Let me give you a series of questions, and you can answer them all at once.  Is that too young to decide?

I noticed in the picture that you gave us in the beginning Jackie Stupani and Mary Christiansen.  If I understood it right, the younger woman donated to the older woman; is that right, in this picture?

DR. VEATCH:  I'm not sure which.

DR. HURLBUT:  The online thing where the 64 year old grandmother —

DR. VEATCH:  I'm not sure what the answer is to your question.

DR. HURLBUT:  Okay.  Well, here's the series of little questions.  What's the average age of death awaiting donation?

What's the average age of a donor?

And what's the estimated increase in life span after a donation?

And do you have a feeling for whether or not there's an age where somebody shouldn't donate?  In other words, there are risks associated with donation.  Let's not ignore that fact, and there are idealisms involved that may be disproporationate, too.  There are very positive idealisms obviously also, but the question is:  is there something in the way of even just getting down to the equation here without the deep, deep questions that Gil was raising?  Is there something a little sort of troubling about the idea of young people donating for old people, for example?

That's the kind of category of question I want to address.

DR. VEATCH:  I think we need to make a distinction between donation after death and living donation.  For living donation, surely the consent has to be limited to competent adults, and there needs to be psychological work-up of the donor to make sure they're competent.  A 16 year old would not normally qualify for living  donation.

For donation after death, the driver's license checkoff, I am not uncomfortable with someone as young as 16 making that choice.  We could adopt a policy that you can't become an organ donor until you're 18 or 21.  By definition, the risks to the donor are not medical and direct.  If there's a risk to the donor at all, it is psychological and spiritual.

I'm quite comfortable with a 16 year old becoming a donor on a driver's license.  That doesn't trouble me.

With regard to living donation, I am very hesitant to impose limits on bonded donors.  By bonded donors, I mean someone with a preexisting relationship with the recipient like a spouse.  It makes me very uncomfortable to envision, say, a spouse who knows that he or she has the lifesaving potential for dealing with a medical problem of a loved one and to have some review committee in the transplant world review the case and decide the donation is not acceptable because it's too risky.  I find that very troublesome.

I'm a member of the Living Donor Task Force and strongly oppose such limits.

DR. HURLBUT:  Do you have the statistics for the questions that I asked about the average age and so forth?

DR. VEATCH:  Those numbers are available.  I don't have them off the top of my head.

I don't see difficulty with donors of too old an age once they qualify to be recipients of a transplant, certainly not in terms of cadaveric donation, but even in terms of living donation.  Frankly, it doesn't trouble me.  I would be interested in hearing arguments to the contrary.

CHAIRMAN PELLEGRINO:  I have Dr. Gómez-Lobo, and let me give the list please because the time is, again, going and I need to warn you about that.  Dr. McHugh, Dr. Kass, and then Dr. Lawler.  So that everyone may have a chance to comment, brevity would be most helpful as well as virtuous.

(Laughter.)

DR.GÓMEZ-LOBO:  I'll try to follow the path of virtue myself. 

Let me go to the point that mostly worries me as a member of a Bioethics Council, as someone who is expected to give advice on ethics, and I think the most troubling part for me is the role of the empirical study in ethical thinking.

I have in front of me, of course, the results of the empirical study of the Ohio citizens.  Now, what is the value of that for the Bioethics Council?  The fact that people are willing to procure organs from people who they think are alive.  Now, one way of viewing that would be to say, now, there's a very serious corruption here in ethical thinking, if that's what they think.

Now, what's the solution for that?  I really admire your willingness to go the frankness road and not call, say, rewarded gifting or compensated gifting "gifting."  I totally agree that one should call that purchasing and selling of organs.

But here we seem to face the idea of changing the definition of death.  I would call it the criteria of death just to accommodate this possibility.  Now, I find that, frankly, unacceptable.  I think that the criteria for death should be independent of that and that there should be a moral decision affirming that we should never ever procure organs from people who are alive.

DR. VEATCH:  I would agree that it is never acceptable to change a definition of death just to get organs.  Leon will remember, I'm sure, Hans Jonas suggesting if that's our strategy, why not define all college students as dead.  We'd get much better organs and solve some other problems along the way.

(Laughter.)

DR. VEATCH:  We can't change the definition of death for that purpose.  I tried to make clear that my starting point was that the present definition of death is incoherent as it stands, and there must be a philosophical correction, one that has been accepted for at least 30 or 40 years by a large number of theorists, including one of the leading moral theologians of the Vatican that endorsed a higher brain definition.

Once we have decided that there is a more philosophically defensible definition of death, the question then becomes, well, why don't we adopt it and save some lives as a fringe benefit.

Typically the answer is, well, it's a political problem.  It won't sell to the ordinary person.  The sole reason I presented the Ohio data was to attempt to speak to the objection that even though higher brain definition of death is philosophically defensible, the ordinary citizen won't accept it.

The result seems to be that many ordinary citizens don't exactly  grasp the difference between what it means to be dead and what it means to be alive.  I, frankly, think I could take the people who indicated in the survey that they were willing to procure organs from the living and convince them that, in fact, the reason they believe they could procure the organs was they believe the person was already dead in the sense of having lost standing as a full member of the moral community.

So I use the survey merely to offset the claim that the philosophically defensible proposal is not politically feasible.

CHAIRMAN PELLEGRINO:  Dr. McHugh.

DR. McHUGH:  Thank you, Dr. Veatch, for your presentation.

But I also have the same sense that Gil Meilaender has, that there are a very large number of themes underlying this that relate to issues of resistance and religious matters of meaning in this process because we don't sell certain kinds of things to one another and don't make exchanges at that level.

But I have fundamentally a more simple question to ask of you and of all the people like myself who are involved in hospital care where we see that the clamor for organs is far exceeding its supply.  And most of these solutions that are proposed, even the solutions you propose, I don't think are going to solve that problem.

Dan and I have been looking at the kidney business since 1955-56, when the first transplants were made, and have seen the wonderful achievements and progress in science in relationship to this thing that has happened over 50 years.  It began with us with identical twins and now has come to the place where we're at.

Now, I'm not sure that I want right now — of course, for individuals I want them, the individuals I know and I appreciate my patients and the like, I would like them to get organs when they can, but at the same time, these statistics of showing this demand, it just says that the science has got to get better, and the science of xenotransplant, you know, the trajectory from the beginning at the Brigham with those twins to now, well, where are we with xenotransplantation?  And shouldn't this pressure be the kind of pressure that we want to be presented, to acknowledge, and say more investment needs to come into xenotransplant because that's going to be the solution?

DR. VEATCH:  Let me simply say I'm supportive of experiments in xenotransplant and immunosuppression as well.

CHAIRMAN PELLEGRINO:  Dr. Kass.

DR. KASS:  Since time is short I'll simply just register that I don't think the current criteria of brain death or whole brain death are incoherent.  I think they can be defended; that there are people writing in the literature.  It is too bad.  Perhaps this Council could take up that subject and defend the understanding of death as the death of the organism as a whole, but you know I think that we differ.  I have just been silent on the subject.

I'm more interested in — and this will perhaps be taken up more in the next session — your thoughts on the buying and selling and the market.  You say in the paper that there really is — this i on page 14 — "There has never been any serious moral problem with permitting financial incentives to nudge middle and upper class people to think about their willingness to consent to organ procurement."

In other words, the issue for you has to do solely with the pressure that this places on the poor.  Is it really true that if there were no poor we would have no concerns about becoming a society in which organs are bought and sold?

If that's your concern, why don't you simply say, look, only those people who pay income tax above a certain sort can enter into the business of buying and selling.

And, on the other hand, if you are now willing to experiment with markets involving the poor, why aren't you in favor of letting them get out there in the market and buy and sell to the highest bidder so that they actually make something from this?

In other words, isn't there really something disquieting about entering into a society in which parts of the body are treated as alienable things, like automobiles and other disposable goods.  If that's not a question for you, I don't see why you don't find some solution compatible with your worries about the poor, either to let them get full advantage of their organs or just keep them out of the market so that they won't be exploited.

DR. VEATCH:  Let me simply say that, indeed, I've been troubled by just those questions for a very long time.  I believe what I've endorsed is incentives for thinking about donation.  I'm more comfortable with incentives for thinking about donation than I am about incentives to actually providing the organs, but over the years I've been moved by the very serious problem of the number of people whose life and death hangs in the balance.

CHAIRMAN PELLEGRINO:  Dr. Lawler.

DR. LAWLER:  I think after listening to Dan I'm all in favor of more aggressive methods to acquire the organs of people who are dead in the noncontroversial sense of dead, but going further than that seems to me to be a huge problem. 

The question Bill asks, I think you answered it too easily.  A husband giving an organ to a wife, this is an act of love.  A daughter giving a kidney to a father creeps me out beyond belief for reasons Bill was trying to call to your attention, I think.

And then the Website creeped me out beyond belief for this reason.  If you have a market, then you have to have advertising, and advertising means scaring up kidneys by having commercials like, "What are you doing at home sitting selfishly around with two kidneys?  You don't really need them."

(Laughter.)

DR. LAWLER:  You know, "what kind of person are you?"    It's not so much the monetary thing that does bother — it does bother me.  I'm not for it, but that in idealistic young people, 18, 19, we don't have the draft anymore and they're not going to conscript my organs, but I could volunteer my organs.

This seems to me to be quite unreasonable demand to put on people, right?  And so when you create a market, you then have to stimulate demand and it requires a certain kind of advertising.  In a way, although I would be very concerned about exploiting the necessity that governs the poor, I might even be more concerned about exploiting the idealism which governs the rich and pampered.

DR. VEATCH:  I think those are all valid concerns.  Let me simply note that in terms of volunteering organs, that's presently legal today and is being done.  So all the questions about the validity of the donation from a young person are already on the agenda and OPOs and procurement personnel have to screen nondirected donors to eliminate those who for one reason or another are not making an adequately competent donation.

Adding money to that mix doesn't change that issue, although it raises the deeper kinds of concerns that Dr. Kass was trying to raise.

CHAIRMAN PELLEGRINO:  Thank you very much.

We have reached the end of this first session.  Let me point out that we have two more speakers on the same subject coming on at 10:45, and therefore beseech the Council to be back promptly on time because I intend to start promptly on time because I know you'll want to have questions for the other speakers as well.

Thank you.

(Whereupon, the foregoing matter went off the record at 10:32 a.m. and went back on the record at 10:47 a.m.)

SESSION 2: ORGAN PROCUREMENT AND TRANSPLANTATION

CHAIRMAN PELLEGRINO:  I think we will proceed, and let me begin with the first speaker for the next session, Dr. Richard Epstein, who is Director of the Law and Economics Program at the University of Chicago Law School.

DR. EPSTEIN, could you?

DR. EPSTEIN:  How long do you want me to talk?  How long?

CHAIRMAN PELLEGRINO:  Half hour.

DR. EPSTEIN:  Whatever you say.

CHAIRMAN PELLEGRINO:  Well, I'll make it clear when it's over.

DR. EPSTEIN:  Somehow or other I don't believe that we're —

CHAIRMAN PELLEGRINO:  Did you jump to that conclusion?

DR. EPSTEIN:  No, I think what I did is I understand this is a system with strong property rights in time, and what I will try to do is to respect it.

I should say in one sense I think having listened to many presentations on this subject, I'm proud to be an outsider to the so-called transplant community.  I think I was brought here and I think rightly so to express a very deep and abiding skepticism.  Everything that UNOS does, my modest policy recommendation is that the organization be forthwith abolished and we try to find some more sensible way in which to deal with organs, but rather than talk about it at that modest level, let me see if I can figure out a general way from an approach which involves a mixture of law, economics, and yes, even moral philosophy to explain what my views are and how one ought to think about this question.

I think the first thing that one ought to do in trying to deal with any normative question is to ask yourself a couple of very simple, descriptive questions, and those are the kinds of questions which ask you how do we explain what the current situation is.

And when we're dealing with the organ situation, there's only one fact that seems to stand out above all others, and that is the chronic and irreducible shortage of available organs, particularly kidneys.

We know what the death rates turn out to be.  Everybody is an expert on that.  The explanation is why does such a situation come to arise, and I think the simplest way to put the explanation is just take the most naive version of supply and demand, abstract out from every one of the special ethical and moral considerations that are associated with kidneys, have a negative sloping demand curve and a positive sloping supply curve, and then create a situation in which you place artificial restrictions on the price, in this case trying to restrict it to zero.

And the prediction is whether you're dealing with widgets or with organs, there will be systematic and massive shortages that will take place under these circumstances.  Quite simply, you get very low supply at zero price and you get an immensely high demand, and the function of a price system in this kind of a universe is to try and figure out how you increase the supply, on the one hand, and reduce the demand, on the other, so that you get yourself into some sort of an equilibrium.

And the way in which people have tried to deal with this in many cases is to ignore this sort of blinding reality and to figure out other kinds of devices in which you could tweak things here or there in an effort to try and boost up the supply without trying to change the price, that is, to work on other kinds of terms.  These could either be moral suasion, which easily turns into coercion.  You could have public campaigns.  You could have other kinds of disguised transactions like barter, which in fact clearly violate the UNOS guidelines, but everybody tolerates them because nobody wants to see more unnecessary deaths that take place.

There is a very elaborate understanding of the way in which when you have regulated prices people try to circumvent the rules, and so the first thing I would urge upon you when you start to think about this particular question is do not get yourselves into the illusion that there is something so unique and distinctive about the questions of organs or body parts or any form of transplantation that the general rules of economics do not apply with respect to this particular situation.

And that, I think, is the descriptive reality.  The question then is how do we start doing this from a normative framework, and here the way in which Dr. Veatch put the point last time in the earlier session was, I think, rather misguided, but I think it represents the dominant thinking on this subject, which is to postulate that there is some kind of necessary and inevitable tension between the principles of the maximization of utility, on the one hand, and principles of justice and fairness, on the other, so that what we have to do is to constantly figure out ways in which we square the difference or overcome this thing.  We're always working in a world of two values.  We never know how much to weight them, and in the end what we do is we produce a giant form of stasis in which it turns out that the shortages cannot be eliminated.

Why is it that I think that this is wrong?  Well, I think the deepest mistake that is made in talking about transplant as a conceptual matter is the regrettable confusion with compensation, on the one hand, and coercion, on the other.  These two are treated almost as though they are synonymous, whereas in every other state of the world what happens is generally speaking compensation is, in fact, regarded as a way to make social improvements, on the one hand, without having a class of systematic losers, on the other.

If, in fact, you decide that every time you make a system with a compensation component in it that you've engaged in coercive activity, you make it impossible to have situations in which you can address imbalances that are created by natural circumstances through the imposition of this particular kind of transfer mechanism.

So let me, in order to make this a little bit clearer, sort of give one the definition that sort of an economic Kantian, to use that kind of a person, would take in the way in which you're trying to think about social welfare.

There are, in general, two kinds of definitions of social welfare that economists and, to a large extent, lawyers use.  Let me mention them both here.

The first of these is something known as Pareto.  A pareto efficient solution is essentially one where you cannot make any person better off without making some other person worse off.  More importantly, in a world of Pareto thinking, what you're always trying to do is to create a set of situations in which you move all people from one state of the world to a superior state of the world, in which somebody is better off and nobody is worse off, and indeed, ideally for the most part you would actually like the gains to be pro rata across all individuals to the extent that you're using state coercion to achieve that result.

In many cases, the only way in which you can create Pareto improvements is to allow allocative changes to take place and then to give cash compensations to the losers to offset what's going on.  Indeed, most people when they start to talk about Pareto improvements as a criterion of social welfare are somewhat uneasy about using it in practical circumstances because what happens is that the condition is so restrictive that if you create a world in which one person is left the tiniest bit worse off and everybody else is made largely better off, you're going to veto the transaction because you have not had a condition of universal improvement.

So what happens is in many cases economists who are worried about this resort to another definition involving not actual but hypothetical compensation, and that's called Calder-Hicks efficiency, and what this means is that you have a situation where you can move from one state of the world to another state of the world, where, in fact, the gains to the winners are so large that you're confident that if compensation could be made, the winners could pay it.  The losers would be happy to receive it, and the winners would still be better off than they were before.

So that what you do is you have a large allocative gain measured by subjective satisfactions, and the possibility of transfer payments, which are not realized because of practical impediments which would allow you to get to some kind of a parity.

And what I would suggest to you is in thinking about this subject, the one thing that you have to beware of in this vaunted business of ethics is a definition of coercion which is so large that it swamps up all efforts to use compensation mechanism to allow for allocative improvements, on the one hand, and a fair distribution of gains, on the other.

Let me give you one illustration from what was said earlier today about how it is that you can mess this thing up if you're not careful.  We heard about something known as an irresistible offer, and then we were told it's nice to get irresistible offers.  They're called recruitments.

Why does it turn out that it is somehow or other a form of coercion in some cases and a form of benefits in the other?  I have to say I don't get it, and let me explain to you why it is that when you put this in the context of wealth and poverty, what is often seen as a dangerous and insidious tendency is, in fact, nothing of the sort.

If, in fact, you accept, which is I think commonly the case, that there is diminishing margin of utility of wealth, that is, the richer you get, the less money counts for you, and you hold out a constant sum of money to a rich person and a poor person, the rational response will be if you're worried about your own utility, is that a poor person should be more willing to sell, ceteris paribus, than a rich person precisely because the money has a greater change in his life than it does with somebody else.

And so, therefore, what you are calling in effect a kind of coercive situation that one ought to deplore really should be understood as an effort of the state to clamp down on a set of opportunities which should, in fact, be encouraged.  Unless you think that these individuals are incapable of making their own judgments, at which point you would not allow them to make donations anymore than you would allow them to make sales, what people are identifying as a problem is, in fact, a benefit, and the reason why they are making the mistake is it turns out that they get themselves into a terrible pickle under these circumstances because they assume that any kind of a transfer payment involved, not as an economist would think of it, as a way of equalizing gains, but rather turns out to be something insidious and to be blocked in itself.

And it's this fundamental moral framework which leads, I think, to the prohibitions that one sees under the UNOS setting and which creates such incredible dangers in the overall operation of the system.

Now, thus far I've been talking about exchanges and talking about this in a sense of trying to figure out how everybody can act in a self-interested fashion in order to improve their lot through a series of voluntary transactions.

There is, however, another problem here which I think is extremely important, and one has to figure out how to model that as well.  And quite simply the question is:  what does one make of the idea of altruism when it comes to dealing with various kinds of human transactions?

And looking at this, there is a great tendency in the world, I think, to dichotomize the concept, and what I mean by that is we start to divide the world into people who are egotists, on the one hand, and who are altruists, on the other, and what we're constantly worried about is the mixes between these two classes of individuals.

It seems to me that that's a mistake in the way in which we want to think about the world.  Generally it's much more accurate not to think about two pure ideal contrasting types.  You're usually going to be safer to think about the situation where there is a continuism of egotism amongst individuals.  There are some people who will be extraordinarily selfish.  There will be some people who will be quite generous.  There will be lots of people who will be in between.

And so then the question is once you understand that, how do you try to model altruism in a way that does not make it into a radically discontinuous state from the various sorts of egotistical behavior, and in dealing with this in the particular paper that I wrote especially for this occasion, what I did is I gave a very simple model.  For those of you who want it on the papers, I think on page 11, and you can look at the graph to see the way in which one ought to think about it, and here's the way you look at it.

Generally speaking, in a world of egotism, what you will assume is that nobody will make any transaction which results in a net cost to him or to herself.  Those things are essentially not going to be acceptable because the theory of rational choice on a radically individualistic model is unless the expected utility after a transaction nettable risk is positive, you don't enter into it.

But what I think, in effect, is that that is clearly wrong.  Even if you look at the current lamentable state with the shortages in question, if you use the rational choice model, you would come up with the observation that in a world that exists without any financial compensation, the number of anticipated transactions is zero.  You would be basically at the origin.  Nothing would start to move.

And yet it is incontrovertible that there is at least some positive response.  So how do you try and model that without giving up all of the sensible stuff about equilibrium theory that results when you're talking about the usual equation of supply and demand?

And the simple response, I think, to this, which actually I have not been able to find anywhere in the literature, although I'm not a full-time professional economist, is to simply take the supply curve and make sure that it intercepts the X axis at a positive point, and then in effect have it continue to go down so that the supply will diminish until at the point where the cost to the individual donor is so large that even the altruist will start to give up under the transaction.

At this point, what you can then do with respect to the situation is to figure out what the equilibrium conditions are going to be on price, on the one hand, on quantity, on the other, even if you now make no other deviation from the usual neoclassical solutions.

That is, what you say, in effect, is that when you're dealing with altruists, if you give them a little bit of compensation, there will be a few more altruists who will come in there, and it turns out that when you cross the X axis, it's not as though the world is a discontinuous place.  What will happen is that the altruism will continue to show its effect because the supply curve will be systematically lower and to the right than will the curve be if you've got pure egotism.

Once you do that and you assume a constancy with respect to demand and you then look at the equilibrium in the two cases, the following observation takes place.  Altruism continues to have desirable social consequences.  We don't know its size or its extent because in equilibrium you will find that there will be a larger number of organs or, indeed, any other good that will be transferred, and they will be transferred at a positive price, which is lower than would take place if, in fact, you had the pure egotistical equilibrium involved.

So that what happens is if you look at this, there is no particular reason to think if you have altruism that somehow or other the use of a market mechanism is going to destroy the operation in hand.

And here let me point out, which I think is a very important constant confusion and error which takes place in this literature which states Richard Titmuss, in his arguments, associated with blood supply, and the usual argument in these circumstances that we cannot allow cash transfer payments to take place because what it will do is it will crowd out the altruists.

Now, what you want to do is to look at those two curves and understand what is meant and not meant when you start to deal with the problem of crowding out under these circumstances.  And here the same situation is if you just look at the standard conventional curve in which it turns out that the supply at zero is zero and watch that thing go up, every time you raise the price what you will do is increase the consumer surplus for those people who would supply it at a lower price.

So, in other words, in an ordinary market the moment you raise the price to ten, what you do is you eliminate all of those people who would have supplied the good at five, and you can argue that that's some kind of a crowding out because it increases cost, but the central feature in figuring out the social welfare consequences of this kind of rule is not the size of the transfer payment.  It's the question of the total consumer and producer surplus that is generated by the transaction.

In other words, if you're thinking about the money going back and forth between parties, the right way to understand it is as follows.  First you assume that the increased prices is a loss to the person who pays it, and then you assume that it is a gain to the person who receives it.

As a general matter, the utility of money is as a first approximation about the same in both hands.  So you can't figure out that there's any gain or loss from the transfer.

On the other hand, what you do is you push yourself back into equilibrium, and then afterwards if you look at the equilibrium situation and work out the gains to consumers and producers, it will be higher if, in fact, the transfer payments are made than not.

And exactly the same argument applies when you're dealing with the other supply curve, which crosses the X axis at a positive point.  You raise the price.  The equilibrium will be different by virtue of the altruism, but there's no crowding out that's taking place.  There is simply the payment of a transfer which doesn't have social consequences plus or minus one way or another, in exchange for which we get a vast increase in the total supply, which allows us to bring this particular market back into equilibrium.

So I think that the clear lesson that one learns from all of this stuff is as follows.  There is, in fact, no particular reason to create any rules that are distinctive to altruists relative to people who are egotists.  The same method of voluntary exchange will work whether you're dealing with one class of the population or with the other.  It is an empirical question as to how much altruism there is, and the way in which you can understand that by looking at the graph is to just ask yourself:  are you somebody who believes that everybody is selfish, at which point that gap is very narrow, or do you think in the general benevolence of humankind that the gap is very large?

Frankly, my dear, for the purposes of social policy, I don't give a damn which way it comes out because the same intellectual solution applies in both cases.  You're going to get to equilibrium.

If you're asking me as a philosopher king which I'd rather have, generally speaking, I prefer a world with a little bit of altruism because you will get a lower price and a large supply of organs, and on balance, you will have some degree of reduction with respect to human suffering.

Now, when we take all of this stuff, let's just look in the framework of the current system at several of the problems that we're having to deal with to see how it is that we ought to think about them.  Mr. Veatch earlier in the day started to talk about the question of how it is you start to deal with organ swaps and those cases when voluntary donations create the risk of incompatible transfers.

And so what happens is that taking the most dramatic situation, I'm A, my spouse is B, somebody else has got the reverse situation, and what we do is we want to flip them over to get two transactions instead of having none.

I think the first thing that one has to understand is that if anybody is serious about those wretched definitions of what counts as valuable considerations in the statute, this is an illegal transaction.  You go back to Roman law.  Transformations in barter have always been regarded as exchanges.  They've always been treated as such under the law.  The thought that this is not valuable consideration is simply a joke to anybody who's serious about what those words mean.

You cannot get a competent lawyer who will look at this stuff who would not say it's anything other than an outright evasion of the statute, for which I say amen and thank you because it's about time that we started to find some ways to get around it.

The more difficult cases are, it turns out, where you have the O-A kinds of oppositions, where you get one person who, in effect, will make an A donation in exchange for having a spouse receive an O donation off the cadaver list.

And here what I want to say is, in effect, if you're thinking about this in terms of the general economic theory, you've got to understand, first of all, what the gains and the losses were.  Mr. Veatch was wrong when he said, in effect, that this is systematically a loss with respect to everybody on the O list.

And the reason why that is incorrect is you cannot simply look at the fact that it pushes people down by virtue of somebody getting up.  That is, indeed, a minus.  But if you're doing the whole thing systematically, you also have to take into account that everybody regardless of their place on the list has a positive probability of procuring one of these matches, and the right comparison is to ask whether or not that chance minus the delay is better than stasis, and almost invariably if you're going to increase output, it would be very hard to find a set of systematic losers when, in fact, the rules are perfectly general.

In addition, it seems to me that this model is wrong also if you take his view of the Rawlsian veils of ignorance, which is very easy to misapply and was done so in that case.  And here I think that there are a couple ways in which you could start to look at this thing, and the simplest of them is this. 

Let us suppose, in effect, you're playing risk analysis.  Then the first thing you have to do is to say we're doing it before anybody knows whether they're an O or an A donee.  You just don't know, or an A or an O donor.

And at that particular circumstances, if you go behind the veil, the big mistake that Rawls made with respect to his own theory is to assume that people behind the veil of ignorance would be extremely risk adverse and would only worry about the condition of the worst off.

In fact, virtually everyone behind the veil of ignorance, even if they had some degree of risk aversion, would certainly think much more in terms of social utility in an expected value sense rather than in terms of this extreme situation.

Indeed, I would argue that the version of Rawlsianism which says that you look only at the guy at the bottom of the list is a highly immoral kind of conception, because what you're saying is that one single individual gets to determine and dictate the social preference for thousands of individuals.

So that what you really want to do from behind the veil of ignorance is that you know if you're an A guy you live, whereas otherwise you die.  If you're an O guy, it turns out you've got this complicated set of choices and you're not sure whether you're bad or worse off.

Nobody in their right mind under those circumstances would ever assume that if they didn't know whether they were O or A, that their anticipated social value would be better off by blocking these kinds of transactions.

And the second point, again, that one wants to make about all of this, if you have any moral ambiguity associated with the status on the O list, what you do is you handle that through the payment of direct compensation, and so you try to figure out what the utility loss is, and you give cash, even taxing the As to give it to the Os so as to make it into an ex post Pareto improvement.

Your last thing that you want to do under these circumstances is to result in this freezing, and so it goes right back to the basic intellectual mistake that I talked about at the beginning.  If this group is going to endorse a definition of coercion that includes compensation, you are bound to have lots of people meet needless deaths because you will never be able to get yourself into an optimal form of equilibrium.

Now, the last point that I want to make — and I have about five minutes, right?  I'm pretty precise on this — is to talk about how we think about directed donations in other situations.  If you recall, when I started at the beginning of the session what I said was the moment you get yourself a major imbalance in supply and demand by putting a maximum zero price on anything, you're going to find all sorts of people who are going to engage in various efforts of circumvention.

And so don't think about organs.  What I suggest you do is that you just look at the headline on USA Today, and it said that higher gas prices lead to lower demand.  I mean, the people do respond to incentives one way or another.  It's going to happen here.

And if you block the obvious thing, which is paying price, people are going to go to more costly ways in an effort to bridge for themselves in more egotistical ways that markets would otherwise have in an effort to get to the head, and that gets you to directed donations in one way or another.

And so what happens is people will start to advertise, and they will start to put themselves up on the Web as individuals, and they'll have their children, right, and all of these piteous and horrible things.  And I say God bless them.  They're doing exactly the right thing, and anyone who wants to stop that is to my mind being quite monstrous from a moral point of view given the enormity of the harm that's associated with this operation.

It turned out that Dr. Veatch said that this distorts the carefully allocated system that we have under UNOS, and my reaction is the quicker we blow it up the better we are going to be.  There is nothing carefully wrought out about the UNOS situation.  What they quickly discovered is taking into account subjective elements that mattered to everybody led to such a hopeless degree of disagreement amongst the various members of the committee that they didn't want to talk about those things.

So what they do is they reduce themselves to a series of largely useless formal criteria which would allow them to avoid the moral ambiguity of collective choice.

The great advantage that you get from directed donations is you don't have choices made by committees that are paralyzed by their fundamental moral disagreements.  Every individual can look at every piece of subjective information they want and if it's their kidney, they can decide who gets it and why.

In fact, one of the odd things about this entire discussion on morality is the very clear standard natural law tradition on giving was a theory of imperfect obligation, which says that people can — under a duty to give it's not enforced by law, but they could pick whomever they want and for whatever reasons and give them whatever they want.  Nobody else could ask the kind of question, and that's exactly what's going on with these directed donations.

What's the result going to be?  Well, it turns out it's going to improve things in my mind fairly powerfully on the recipient's side.  One of the things that you get with these wretched UNOS criteria is that you can't take the subjective stuff into account.  You wait until people are so long in the tooth and so injured that the useful lives that you get when people get to the top of the queue are much shorter than they would have been if you could have gotten people in the middle.

When people are making individual judgments with their own organ and they take this stuff seriously, what you're going to do is substitute recipients which will have a longer life and a more useful life for people who have managed to endure to the top of the queue.

And if you then allow this thing to work, it will shorten the queues so even those people who remain on it will do somewhat better than before.

So it seems to me that what we really ought to do under these circumstances is to engage in a systematic effort to try and figure out how it is that we continue to use the Internet and similar devices to engage in a way in which we continue to expand the matching capability.

Or to put it in another way, what we have done, in effect, through the Internet is to figure out how it is that we reduce the cost of matching, which means, in effect, that we have a greater probability that the altruists will find themselves and to work in that direction.

And I'm going to be in favor of the situation with respect to anonymous donations, which become less anonymous when people got to know one another, and I think that perhaps the single most appalling, mindless, senseless, gratuitously cruel proposal that has been made is the one by Zink and her colleagues who said, "Well, we've got to ban all of this stuff because we want to force people back on the queue."

This poor woman does not know that it's not going to be a one-to-one ratio.  In fact, probably if you knock out direct donations, 95 percent of the people will simply disappear at a guess.

And so what you're saying is that somebody's aesthetic view of a queue which has no particular moral validity, is so strong that you're willing to risk .95 lives every time you chase a donor away.

So let me, in effect, say and end in the following words.  I think the organ debate has been utterly marred by a series of false forms of intellectual sophistication, ethical niceties, aesthetic reservations, moral intuitions.  There are too many dead people out there.

I'm not quite sure whether you can solve it, but here is the last sort of example.  I co-authored an article in which we were talking about this, which was rejected by JAMA.  There were two referees' reports which showed the stupidity of that operation.

The first one says, you know, you start putting in all of these cash incentives.  They're not going to make the slightest bit of difference.  Elasticity turns out to be zero.

And the other referee's report said, God, if you put in these cash incentives, everybody will jump to supply these all.

It's what happens in this world.  The problem about ethicists is either demand is perfectly elastic or perfectly inelastic.  If you just think of things going up on a an angle, you will be so much more educated than beforehand, and the moment you do that, those graphs make sense and the referee's reports basically are the very strong recommendation for shutting down JAMA on all matters of social policy.

(Laughter.)

DR. EPSTEIN:  The level of ignorance that is encapsulated in that operation is a public scandal, and frankly, my dear, I don't care.

Who wants to repeat this?  It is a public disgrace that a journal of that eminence should be able to operate in that particular way.

Thank you.

(Applause.)

CHAIRMAN PELLEGRINO:  Thank you very much, Professor Epstein.  Very much grateful to you for observing the time limit as well as your provocative remarks.

Next we will hear from Dr. Delmonico.  He is a Professor of Surgery at Harvard and someone who has to walk the walk and talk the talk every day, and we'll, therefore, hear from the bedside or I guess I would say the operating room bedside.

Dr. Delmonico.

DR. DELMONICO:  Thank you, sir.

I think whatever slides that we're going to have, I think we'll have to just abandon all of that so that I can respond to what we've heard here this morning, and I'll be pleased to have those comments withheld until we're all finished.

I'm here to represent not just myself, but a number of organizations.

Can you hear that all right?

And those organizations would take umbrage and concern about what Mr. Epstein has just said.  I'm the president of the United Network for Organ Sharing, and over the course of the last 20 years thousands and thousands of hours of volunteer effort by professional colleagues that Mr. Epstein associates with today and who are, in fact, leaders within that organization have given their time to make what can be an imperfect, but the best of what can be done at the moment in terms of organ distribution and allocation and public policy.

That public policy is not ignorant, and just because his paper from JAMA was rejected doesn't make all of that work in disrepute.  Mr. Epstein wants to serve those who could have a longer and more useful life.  That's, in fact, what his comment was just now.  I would suggest that he analyze the list.

The list is growing by an overage population that have been inadequately served by preventive medical care, and it is not a matter of limitless organs, but it is a matter of what might have been care as it pertains to obesity and hypertension and atherosclerotic disease and Type II diabetes.  It has not been administered, that is, fueling this list.

The question about what is the average age of the person dying on the list is apt because it's not the young person dying on the list.  We're talking about, as he put the main issue here, about kidneys.  More than half of the list now is the older age population, and the sector of that list that is less than 50 years of age is, in fact, stable and could be resolved by the unprecedented increases of organ donors that we've had in the country since 2003.

That list is growing because of inadequate medical care, and it's not just solvable by buying organs, and the organizations that we're here today to represent, and I'm going to read their statements as we get to that, we'll make that amply clear.

And Mr. Epstein is going to have a big obligation.  He's going to have to overturn the National Organ Transplant Act, and why I'm here as well is to say I wish him best wishes to do all of that, but we have an expectation and we'll have a fight. We'll have a fight at Congress that has already been visited to say that that won't occur.

We're also here to ask of this august group not to overturn the NOTA, not to bring a regulated market of organ sales to this country and do so on behalf of international organizations and their testimony is before you this morning.

Now, we'll return to the regulated market in just a moment.  I do wish to address some of the comments that Bob Veatch made.  He would have us reconsider the definition of death.  That is particularly disturbing to me as a transplant surgeon of 35 years, and mentioned that the current definition of brain death is incoherent and that a large group rejects the whole brain death definition.

I'm concerned about the representation of a large group because I know of no such large group, and I don't find the definition incoherent in this whole brain concept. 

Whole brain means, for everyone in this room, not only the cerebrum, but the brain stem, and the brain stem controls our spontaneous respiration.