November 17, 2006
COUNCIL MEMBERS PRESENT
Edmund Pellegrino,M.D., Chairman
Floyd E. Bloom,M.D.
Scripps Research Institute
Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions
Rebecca S. Dresser, J.D.
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Michael S. Gazzaniga, Ph.D.
University of California, Santa Barbara
Robert P. George, D.Phil., J.D.
Alfonso Gómez-Lobo, Dr.phil.
William B. Hurlbut, M.D.
Leon R. Kass, M.D.
American Enterprise Institute
Peter A. Lawler, Ph.D.
Paul McHugh, M.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender, Ph.D.
Janet D. Rowley, M.D., D.Sc.
University of Chicago
Carl E. Schneider, J.D.
SESSION 5: ORGAN DONATION, PROCUREMENT, ALLOCATION, AND TRANSPLANTATION: POLICY OPTIONS
University of Michigan
DR. PELLEGRINO: Good morning. I want to thank you all for
being so prompt. It's wonderful. I'm looking around the
table. Everybody is here. Splendid, splendid. It's a good start.
This morning's discussion, as I
mentioned last night toward the end of our meeting, is to look at
certain policy options that have been prepared by staff, Eric Cohen and
Sam Crowe. And they're intended to move us a little bit closer to
defining the Council's posture on some key questions in organ
donation and allocation.
And that project and that report is in the process of being
developed. And this morning I think it's very important to those
developing that to hear your views particularly on these policy
suggestions that they're making.
Once again, I'll repeat what I said yesterday, that we hope
you will think of each one of these in the light of the background
of the current guidelines, the current practices. But take those
as a given because they're taken from the literature and they
have been summarized well, I think, by the staff and then to look
at each of the policy options.
Now, the way I like to do it — discussions of this kind
are difficult with a group — is first to throw it open to you for
anyone who wants to take any one of the policy options to comment on.
The staff is here to help you, answer questions you might have about
what they might have meant for this or that aspect of it.
And then following that, I'm going to make sure that
everyone has something to say about these policy options. So I think
you're getting familiar with the technique that I used sometimes.
And let's go around and see that everyone gets a chance to say what
she or he thinks.
So the first step will be to open it to all of you to make
any general comments you want or any specific comments about a specific
policy or any questions you have of the staff. Carl?
PROF. SCHNEIDER: Being new here, I have no idea what
happens next. How do you come from here to actually having a report?
Drafting is a long and agonizing business. And getting 18 people to
agree to drafting looks like a very impressive achievement to me.
DR. PELLEGRINO: Eric is coordinating the effort of this
particular report. So let me ask him to give you his approach to the
— we're all in agreement with him, but he can express it more
clearly than most of us.
MR. COHEN: I think the idea is to get guidance from this
session as we have gotten very helpful guidance from the number of
discussions we have had on this subject on the ethical and policy
dimensions in general and then do our best to prepare draft chapters of
the report. Those draft chapters will then be circulated to all the
members, giving everyone a chance to give extensive comments.
We will both revise in light of those comments and
circulate each member's comments to all the other members, as we
have done with previous reports so that everybody sees every step of
the process and so that members both have enough time and a couple of
chances to make their comments on the draft.
We have had some reasonable success, I think, in the past in preparing
reports that basically everybody can own, even if everyone doesn't
necessarily own every single policy recommendation if we go the
policy recommendation route. But that's the idea, to take the
guidance we get from these sessions to prepare draft chapters and
then turn them over to you to give us guidance about how to improve
PROF. SCHNEIDER: Thanks. That's very helpful.
DR. PELLEGRINO: Thank you very much, Eric.
DR. FOSTER: Eric, one of the things that surprised me
about the draft that was given us was what seemed to me a failure to
deal with what much of the conversation about the organs was concerned
with. We have heard, that is to say, the issue of payments for organs.
I mean, at the last meeting, we said this would be
extensively discussed by the Council in its report. And in the last
item here, it's already decided that the organ donors should be
true donors providing organs not for pay or profit but as gifts of the
body to those whose bodies are failing.
And it seems to me that may be something that one would
conclude, but if you don't consider that thing in detail as the
arguments pro or con, it seems to me that the report is — I mean,
there are some interesting items. Okay. You know, we can give some
payments to be sure that you get drugs, immunosuppressive drugs, or
that you have an insurance policy and so forth.
What we are talking about is a massive shortage of 95,000
people on the things. In my view, there is no possibility that the
recommendations that are in here will do anything about that.
And we talked a little bit about this last night, just
casually, that renal failure, for example, is going to keep increasing
until we can solve the problem of diabetes. Prophylaxis is not going
to happen until you control this. So you have got a sort of an
unending demand for these things.
So I would really like to understand why it is that this
huge issue was, in essence, eliminated with a sentence that says that,
you know, we've got to give these things without the arguments that
we have been hearing about.
MR. COHEN: Well, thank you very much for that question.
Let me see if I can give an answer. Those arguments will be a major
piece of the final report, just as they have been a major piece of the
earlier working papers, especially working paper number four, which was
considered extensively at the last meeting.
We have heard extensively, both in the Council and on the
staff, from Dr. Ben Hippen, Dr. Art Matas numerous times. The case for
incentives will be given a very full and vigorous presentation in this
report and a very fair.minded one.
Now, moving forward, the second part, these potential
recommendations — and these really were written for you to discuss.
It's not our job to decide what the Council ought to recommend but
to put forward in as clear a way as we can ideas that you can discuss
and coalesce around.
This part, this short paper, that you have seen will be
only one piece of a final chapter that summarizes and lays out all the
core arguments. And so there will be three core ethics chapters, as
we're envisioning this anyway, on the ethics of living donation, on
the ethics of deceased donation, on the ethics of organ allocation.
There will be a chapter that lays out with as much fullness
and objectivity as we're capable of, the full range of policy
options from presumed consent, from organ markets, from the
redefinition of death to a higher brain criteria.
And those arguments for those different policy options will
be laid out in full, but our sense from the numerous discussions
we've had at Council sessions, from the poll we did of the Council
members is that most of the Council wants to try to find policy
recommendations that work within the framework of gifting, that one
acknowledges the problem. And it's the shortage of organs that
we're going to feel.
But ameliorating that shortage is one of the many goods
that are at stake in this debate. And what we tried to do is say if
we're going to embrace the moral framework of gifting and the moral
framework of personal consent, family consent, people's consent not
being presumed, if we're not going to redefine death in some
dramatic way, are there things that we can do that both promote the
care of donors, promote the care of living donors? And four of the
recommendations are devoted to that.
Are there things that we can do that both facilitate
something like donation, a controlled donation after cardiac death, but
also make sure it's done with an ethical framework? Are there
things that we can do to make sure that those patients who do receive
organs get the drugs that they need to make sure that those organ
grafts are successful?
What we have tried to do is lay out a series of recommendations
that actually would be serious changes in the current policy. And
in many ways, these recommendations are more extensive than those
offered by the IOM report, for example, but recommendations that
try to build and ground themselves in the ethical framework, which
seemed to be where the Council was in general. I don't want
to speak for every member, certainly not for you, but that was our
So that's I guess a two-part answer, no, that those
arguments are not disappearing. And they will be a major part of this
report. And they will be presented in full.
And we have made a great effort to hear from those eloquent
defenders of a market system who know full well the human cost of not
having enough organs.
But at the same time it seemed that gifting seemed to make
moral sense to the Council. And what we want to try to do is offer
some policy recommendations that built on that framework but also moved
DR. FOSTER: Well, that's helpful. It looked like when
you start, you know, with these things as the fundamental conclusions,
that made me worry a little bit about it.
I presume, just to finish, have you given any thought or
has any thought been given to the potential costs of the
recommendations that we have in these things? In other words, what
I'm worried about is that the recommendations that come here, many
of which are thoughtful and I think are good, are going to be extremely
costly to do without dealing at all with the fundamental quantitative
problem of organ shortage. I mean, so maybe we just wait to see about
that a little bit later.
There are a lot of them. We're going to take on the
drug costs for life, all of these other things that are in there are
going to be very expensive. But I can't see anything that's in
here that would be more than a decoration on the problem that we face;
that is, the organ shortage.
We may just have to say, "Well, we can't do
it." People are just going to die. And as many people as we can
save, that's what we'll do. But I just can't see anything
in here that would come anywhere close to quantitatively touching
95,000 or however many there really are that are there.
I am encouraged that we're going to be at least detailed about
the market problem as a solution or not.
DR. PELLEGRINO: I think, if I'm not incorrect, Eric,
we're trying to get a feel of whether these recommendations are
supplementary to the guidelines that already exist, A; and B, to get at
the specific question of how much it costs will depend upon whether or
not you accept or feel a particular proposal here does make sense.
Then we can take a look at the economic dimension. Am I right about
MR. COHEN: That's right. I mean, once we get a sense
that there are particular recommendations here that the Council wants
to put its weight behind, it's our job to go back and develop them
with much greater precision and much greater detail.
Now, look, this is an ethics Council. We have some
economics expertise, both on the staff and on the Council. And we will
certainly do our best to paint a picture as well as we can of the
This is not going to be an econometric full-scale analysis. And I don't
think that's what you were calling for. And I don't think
that is what the expectation would be. But what we can do is develop
what we presented here in a short form with much greater precision.
And even for those things that we might endorse as a Council,
being very clear that there are costs, there are limitations, that
these are at best partial steps, partial answers, but also reminding
the Council and the leadership of the report that ameliorating the
organ shortage is one part of the ends of a policy in organ transplantation
but obviously a central one. And hopefully some of these recommendations
would facilitate donation, things like paired exchanges and list
Once the Council coalesces around a specific set of
recommendations, we will develop them with much greater precision.
DR. PELLEGRINO: I think raising the questions you did is
exactly what we're looking for, more input to the staff on whether
the Council stands on these kinds of recommendations with, of course,
the follow-up depending upon what the implications of each of these
recommendations may be. That has yet to be done.
I have Dr. Dresser and then Dr. Bloom and then Dr. Hurlbut
and then Dr. Kass in that order. Dr. Dresser?
PROF. DRESSER: I apologize if some of these questions are
repeating earlier discussions at meetings I missed. I have a couple of
small things and then a larger question.
On page 7, second paragraph under number 5, "Immunosuppressive
Drug Coverage," at the very end, you say that if someone receives
a transplant in a hospital that's not Medicare-approved, the
patient can't get coverage for the drugs. Maybe that's
unfair, but also there's probably a reason for that in that they're
trying to get people to get their transplants in places that are
quality-approved and places that do a lot of them and do a better
So I wouldn't want to just throw that incentive out the
window. Maybe the way they have an incentive set up is unfair to
patients, but I think you have to acknowledge that there might be a
good reason for that.
In the next section on geography, I remember it used to be
that well-situated patients would get on multiple waiting lists. And
there was controversy over that. Is that still permitted? So that
might be something. I don't think that was mentioned here. But
that seems to me to be something that is probably unfair. People who
don't know about that possibility can't take advantage of it.
And then the next section on allocation, there is a
discussion of two things. One is a preference to younger people. And
that seems to me somewhat controversial. And we probably need to talk
And the other is in terms of trying to give the organs to
people who would benefit the most long term and net. I certainly agree
with that, but my understanding is that predictabilities in that area
So the AMA document, Council tradition, ethical, whatever
it's called, they endorse this only if there are significant
differences; that is, to have one person who clearly would benefit much
less than the other, it's okay to draw a line. But if it's
something like people where you would say 40 to 60 percent chance of
5-year survival, the chance of being mistaken about the 40 and the 60
percent are high enough that you wouldn't want to draw a stark line
between those 2 people.
So I think it would be better to hedge that and say we
realize that there's uncertainty. And so this would only apply if
you could definitely say somebody has a much better prognosis than
This is one more just small point. On 11 at the top, where you
talk about the cardiac death, if the patients don't die quickly
enough to become donors, take them back to the intensive care unit
to die in a peaceful and respectful way. I guess I never thought
of an intensive care unit as a peaceful place to die.
PROF. DRESSER: I mean, wouldn't it be possible to just
leave them in the room to have a peaceful death? I don't know the
logistics of it, but that just sort of struck me.
So those are my comments.
DR. PELLEGRINO: Thank you very much.
I have Dr. Bloom next.
DR. BLOOM: My comment has to do with page 10, category 4.
And it epitomizes my concern that we are tacitly accepting the concept
that end-stage organ failure is inevitable and that we have to match
the supply to the demand.
And we don't say anything in the report about reducing
the demand for organ failure replacement. And it seems to me if we
look closely at the causes of renal and liver transplants, we will find
many cases in which a better self-evaluation of health during their
lifetime could have reduced the demand. And if we only talk about
supply control, we're never going to meet the problem, as Dan very
I think that either in the introduction or in the
conclusions or someplace, it would be irresponsible of us not to call
attention to the fact that we're never going to meet the supply if
we let people destroy themselves.
DR. PELLEGRINO: Thank you very much.
DR. HURLBUT: Floyd's comment goes back to the heart of
another issue. I was a little surprised looking at these
recommendations, not because I didn't think they were very
interesting and worthy of discussion, but it seemed like we hadn't
quite gotten there yet. I mean, for example, why weren't we
offered an option of paying for organs because we didn't absolutely
resolve that issue?
It seemed like we haven't addressed certain fundamental
questions completely yet, although we have done a preliminary
discussion. And out of that, it seems like quite a few more proposals
could have been put on the table and then voted on.
More specifically, it seems to me that I have always regretted
that we never really talked about Leon's paper, which I think
was part of our readings. And it was very rich in fundamental orientation,
but we never talked about it.
And I feel like for us to address this for certain types of
transplantation, at the moment when transplantation is potentially
expanding into new realms, there is something strange about it.
It's almost as though we're not doing the thorough analysis
that we could do, which would make a real contribution.
I mentioned at the meeting last time the possibility of
womb transplants. And several people came up to me afterwards and said
they had never heard of it. Well, as you probably noticed in the last
two or three weeks, it's all over the news.
And it seems to me that that is just one of several new
areas of transplant that will be emerging, especially as we go
searching for adult stem cells and so forth.
And we have an opportunity here to address the more
fundamental questions associated with commodification and
commercialization and make some comment about the spectrum of kinds of
I mean, I think a womb transplant is a very different
social and medical matter than a kidney transplant. Now, if we want to
just confine our discussion to a couple of categories of transplant,
that's one thing, but at least we need to figure out that is what
I personally think we do a greater service if we talked about
this with a notion of the body parts apart from the whole the same
way we did a little bit about death, which I thought was a really
excellent part of our contribution.
Just one other issue here appropriate to what Floyd was
saying. In the proposal ahead, it talks about benefitting the young.
One thing absent from that that struck me was that there was no mention
of the question of whether or not the cause of failure of the organ
would come into the equation at all.
So you're going to give equal donation to people who
abuse the body? And how many donations in a row are you going to give
to somebody when they continue to use alcohol or drugs and so forth?
These are all very serious matters of compassion. Medicine
tries not to judge the individual life, realizing the complex realities
that go into the tragic circumstances of people's lives.
Just the same, we need to be realistic about the causes of
the problems of organ failure.
DR. PELLEGRINO: Thank you, Bill.
MR. COHEN: I think it's actually more helpful to us to
keep hearing from the members. I can try to comment more generally at
the end, but I think we should keep going.
DR. PELLEGRINO: Thank you.
DR. KASS: Thank you very much.
I want to try to touch comments made by a couple of others and
then maybe add a comment of my own. I think Dan Foster's point
is extremely important. Notwithstanding the additional elaboration
that we got from Eric about what that larger report is going to
say by way of contributing to a richer bioethics and laying out
all of the arguments, one should acknowledge the fact that people
are going to read, a lot of people are going to read, this document,
will look at the recommendations, and look at the recommendations,
if not alone, almost exclusively.
This is a report that has been occasioned, this is an
inquiry that has been occasioned, by the organ shortage. That's in
the way of how we got into this. We might have taken it up for other
reasons, commodification of body, but we took it up under the heading
of the organ shortage.
And it seems to me that if, as I think Dan is right, that
we are not going to with these recommendations do terribly much about
overcoming that shortage, point one; and if the particular measures
that we have offered of the sort that are here turn out to be so
expensive as to be little likely to be enacted, people are going to
say, "Look, they have taken up this subject of shortage. They
have suggested a Band-Aid. And the Band-Aid has no adhesive."
And in the end, we're left with a shortage. And I think that would
be an embarrassment.
Now, I was on my way to making the point that Floyd has
made now several times in these discussions. Maybe not just in the
recommendations but earlier on in the analysis we have an opportunity
to define this problem not only as a problem of organ shortage but, in
fact, to think about the question because, look, even if you allow
payments in organs and you take that presentation that we had —
I've forgotten the man's name who gave us the figures about the
people who are on their way to end-stage renal disease. And if we
don't get a handle on obesity and diabetes, those numbers are going
through this. There aren't going to be enough organs to be sold to
deal with that.
So it seems to me it would really be irresponsible to allow
the shortage to define this report. And, therefore, I think not only
in the recommendations but early on some large discussion based upon
that presentation and some of the public health considerations, that
would be a major contribution, in fact, in thinking about this because
this isn't the only disease for which there would be — this
isn't the only area for which there would be massive expenses and
great innovations that would be required unless we go to the route of
public health prevention education, rather than find some way to bail
people out there.
So I think that would be important. I think there should
be something in the recommendations here. And I think it should be
prepared by a serious discussion, for which we have I think had some
I guess that's the larger point. Maybe we're going
to come to the particular things on allocation, but it occurred to me
— I don't know to what extent this figure is in — whether people
in need of transplants have dependent school-aged children or not. In
other words, there are multiple lives that are to be affected here and
other responsibilities. I would think that that ought to be properly a
And you might then want to think about veterans and other
people who have a special claim for special attention. But I would
have thought that who depends upon the old person might have some
bearing in the allocation question. That's a minor point.
I think the larger point I think is important. And let me
just finish with this. I think given what's in the public discuss
about this question, rather than sort of hide from the conclusion, we
ought to acknowledge in a way the recommendations that are being
offered here. They're sensible, those that we agreed to. They
might be desirable. But, rather than simply hide the fact that this is
not going to meet the shortage problem, we should own up to it.
DR. PELLEGRINO: Thank you very much, Leon.
I have next Dr. Lawler.
PROF. LAWLER: Let me agree with the argument
that began with Dan that there is the sense in which these recommendations
start in the middle. Eric explained why that is the case, but still
it is a bit jarring that we have rejected the possibility that it
is becoming more fashionable, more insistent; that is, the market
and organs. And by rejecting the market in organs and embracing
the present system of gifting, we, as Leon points out, are embracing
the shortage and that the shortage will not be addressed in an effective
Let me point out once again, as to the final report and, as Eric
pointed out, this is a small part of it. And we're getting
responses. And this is exactly what we would like to get. But
please be under no illusion that this is the total report. I think
Eric has been working with Sam on this with a lot more to go. So
what you are saying is very appropriate and right at this time.
And do not take the absence as something meaning it is neglected.
I agree with embracing that conclusion, but we are going to
have to give a powerful argument for it, giving due attention to the
argument in the other direction, which is not trivial. I was most
impressed with Ben Hippen when he was here, number one.
Number two, I agree that the recommendations, specific
recommendations, are made in justice. They're mostly good ideas.
They're expensive ideas. And so, as Dan points out, many of them
are unlikely to be adopted. None of them are likely to address the
shortage in any significant way.
That doesn't mean I'm against them. I think people
who do donate their organs should be properly cared for and compensated
for their time and not lose their jobs and all that. But it's not
going to increase the number of donations very much as far as I can
tell, and it will be very costly.
And, number three, maybe we have not talked about this yet, but
the allocation thing seems to me to be very complicated and incompletely
and inadequately discussed by us. We would almost have to have
a separate meeting for that.
These ideas that Bill had that we should look to the cause
of the organ failure and give a preference to people who had
contributed nothing to it, it wasn't their fault, that we should
look to the situation in the person's life, does the person have
dependents and responsibilities, once you start doing these things,
though, you're starting to make very complex and tricky and
And if you're looking on page 10, the net benefit
paragraph, I'm not sure what that means exactly, but you could
easily read this in this way. A guy, a poor man or woman, who is on
dialysis and is doing well would not qualify for a kidney as quickly as
someone who was doing badly on dialysis. Now, if I were on dialysis, I
might be somewhat irked that I am not going to get a kidney because I
have been such a good sport about dialysis, my body is doing okay with
For so many reasons, including this one, according to Ben Hippen
and the other experts, dialysis can turn on you at any moment.
You can be doing well. Then, all of a sudden, you're not.
And so the fact that I am doing well on dialysis this week shouldn't
be a cause for me being kicked down the kidney list against the
guy next to me on dialysis who isn't doing so well. Who knows
And, again, that's not a devastating reputation.
It's just these allocation questions are very tricky and complex
and all of that. I just don't think we have looked into them
sufficiently at all. I have a hard time having an opinion one way or
In the same way in this preventive medicine question, you
know, dumb joke, although I may not look like it, I'm in favor of
PROF. LAWLER: I do think we should emphasize that,
nonetheless, there is an empirical question here, also raised by Ben
Hippen. He was of the opinion that even successful preventive medicine
would not reduce the kidney shortage because a lot of the kidney
shortage is going to be a down side of people aging, more old
people's kidneys. Elderly people who are otherwise healthy are
going to have failing kidneys, people who have had marginally high
blood pressure for a large number of years and so forth.
So he told us very insistently that although preventive
medicine is a good thing, we should emphasize it. We shouldn't be
deluded that it would do much actually to deal with the shortage.
On this issue, I'm not sure this is a factual issue we
can come out for preventive medicine, but that can be an integral part
of the report. I'm all for that. On the other hand, I don't
think we know enough to say definitively that a very successful
preventive medicine program would actually reduce the kidney shortage.
I think we really would have to do more work there to be sure.
DR. PELLEGRINO: Thank you, Peter.
Just one brief comment. I personally believe the payment question
is a critical one and we should face it head on. And it will be
— I think the difficulty most of you are having now is that
we have jumped into the middle of the play, not sure if it's Romeo
and Juliet or whether it's Hamlet or what.
And I think what we were looking for perhaps is, again,
just what you're doing, giving us back the things that the Council
feels should be emphasized. And I think their absence, let me say once
again, does not mean that we have not been considering it, but we
really appreciate what you're saying.
Thank you, Peter. Next?
DR.CARSON: Not withstanding the very thoughtful
comments Peter just made, I certainly would have to strongly endorse,
you know, the wellness concept that Floyd and Leon have talked about
and believe that one of the greatest services that we can provide
to the government and to this nation is to begin to emphasize more
the whole concept of personal responsibility in terms of one's
health in a health care system that directs itself more toward sickness
As far as the transplantation situation is concerned, now,
the bible says that the love of money is the root of all evil.
And I can certainly see some scenarios where people would induce death
or terminal disability in a family member in order to get money.
Years ago when I used to review policies for insurance
companies in cases of accidents, it became very apparent that there was
a certain group of physicians and lawyers who could be counted upon to
create whatever records needed to be created in order to game the
system. And it was obviously done for monetary purposes.
So we certainly have to be very cognizant of that when we
enter the realm of payment for organs. And I think it needs to be
clear beyond a shadow of a doubt when this discussion finished whether
as a Council we are saying payment for organs is unethical or are we
saying it's ethical but needs very precise guidelines.
DR. PELLEGRINO: Thank you.
DR. GAZZANIGA: Well, just to add my voice of support, I
think Bill Hurlbut put his finger right on it. We did have discussions
of the market ideas, one unforgettable session you all remember. And
while some people may find the concept sort of morally allergic, I kind
of think that there is a sense that while we don't like it,
we're willing to consider aspects of it. So maybe this will all
come out in due course.
I would suggest that, actually, the staff spend some time... or
maybe one e-mail to Richard Epstein would suffice. You could get
a return model, for those who are actually proposing this, a model
of how it would work, what are the number of organs that would be
generated. This is what people do. And so we should have an example
of that as we come to grips with the kinds of issues that Dr. Carson
So, in other words, a full exploration of that topic I
think is part of our obligation if we're going to continue on this
DR. PELLEGRINO: Thank you.
PROF. MEILAENDER: Well, I had a few comments on particular
items, but I think I will save those and just make comments on a couple
of general issues that have arisen for the moment at least.
First, I was not actually bothered by the nature of the
paper and so forth. I mean, I took it to be not by any means the
entire project of something else, but I am easier to get along with
than a lot of the rest of you.
PROF. MEILAENDER: And that probably accounts
for that, I'm just sort of an amenable kind of person.
Two other things. I have often as we have had these
sessions on this found myself just sort of pondering and not quite
certain what the answer was why given its cost organ transplantation
has such a privileged position in just the whole scheme of things with
respect to health care and the way we spend our health care dollars.
And if people are tossing in bigger questions that they
think need to be raised, then I would not think that that is a smaller
question than some of the others that have been tossed in.
I mean, I realize there are certain historic reasons. I
mean, first we committed to dialysis for weird reasons. And then that
generates a commitment to transplantation as a better solution and so
forth. But you know why is that?
And particularly if — I mean, the stuff that Peter
reminded us of, particularly if it's going to be an increasing
number of considerably older people whom we are thinking about
transplanting. As you know, I am not interested in judging the lives
of older people as worth less than those of younger people, but,
nonetheless, just in terms of this privileged position of organ
transplantation, you have to ask exactly what the argument is for it.
So if we're thinking that there are some fundamental questions to
be raised, I think that also should sort of go on the list, really.
And then the third thing that relates to Floyd's
comment and Leon's — and other people have chimed in in various
ways — I was finding myself in sort of a mixed reaction. I mean, it
does seem right to say you should pay attention to the demand side and
not just the supply side. And the healthier we are, the less the
demand would be.
And it seems right to say that there is a kind of personal
responsibility for health to some degree. Illness also strikes in
random ways, however. And somehow I guess I would want to make sure if
we turn in that direction we distinguish between saying that efforts to
make people aware of personal responsibility for their health are good
and should be pursued. I mean, it's kind of a nanny state quality
to that that I am not crazy about, but I understand the importance of
That doesn't necessarily have any implications for who
should get a transplant if he or she needs it. There is a kind of
harshness or potential harshness that is built into the notion of
personal responsibility as well.
So it is one thing to say personal responsibility should
lead us to think about ways to encourage people to take care of their
health such that they wouldn't find themselves in need of a kidney
transplant, for instance. It's another thing to say that the fact
that I've not taken very good care of — it's really Peter who
has not taken good care of himself — should be a factor to be
considered in whether you get a transplant.
As I say, there's just a harshness there if we're
talking about a public policy that I at least would draw back from. I
don't know where the rest of you would be, but I think at least
there's a distinction there that it seems to me important to keep
DR. PELLEGRINO: Peter? Okay.
PROF. LAWLER: Let me just say in self interest, I
completely agree with you on that point.
DR. PELLEGRINO: Dr. Schneider?
PROF. SCHNEIDER: I have a few comments. First, I share
Gil's discomfort with the "You asked for it. Now you have
it" connotation that some of the "You must take care of your
own body. And if you don't, you will suffer the consequences. And
that shouldn't be society's problem."
I've spent a lot of time with dialysis patients. And
they are people, many of them, whose lives are so very difficult from
the very beginning that they struggle with a lot of things. And they
come without very much equipment for doing well with it.
They're often not very bright. They can't read.
They have difficulty with the simplest kinds of numbers. They have, as
these things would suggest, very little education. They struggle in
their lives in a lot of ways.
I remember interviewing one such man, who told me very
proudly that one thing that he could always be grateful for in his life
was that none of his children were in jail.
And someone whose social life was at that level of
difficulty seems to me somebody for whom it is easy to have a lot of
sympathy, even if he's done things that destroyed his body.
That leads me a little bit to this discussion that Peter
had said something about about trying to make distinctions about who
ought to get kidneys. And when we started off about half a century ago
dealing out kidneys, we tried to make exactly those kinds of
And that collapsed. And it collapsed for some of the kinds
of reasons that we have just been talking about. It also collapsed
because it turned out to be too hard to figure out who the worthy
The third thing I wanted to say is a more general and not
very helpful comment. I think if you look over the kinds of
recommendations that groups like this have been making over the last
several decades, when they come to making concrete policy
recommendations, you see a record of very discouraging failure.
A lot of things that seemed like obviously good ideas —
and I would include things like informed consent and living wills, the
Patient Self-Determination Act, I am perfectly happy to go on with the
list — that seem so obviously right have turned out not to work
remotely in the ways that they were intended to.
What makes me a little nervous about some of the
suggestions here is that they are so numerous and so specific and so
complicated that it's very hard for 18 people who do this rather
glancingly to feel that they really understand the proposals
they're making and are reasonable confident that, unlike all the
rest of them, that these are actually going to work.
Last comment. On the money thing, obviously I appreciate
the importance of not spending lots of money for relatively modest
returns. On the other hand, I'm a little uncomfortable with all of
the discussion about it because in a lot of the dialysis situations,
it's cheaper to have the transplant than it is to have somebody on
dialysis for a long time.
DR. PELLEGRINO: Further comments? Dr. Gómez-Lobo?
DR. McHUGH: I found this report very interesting, and
certainly the discussion has been very interesting. But I want to
enter one aspect of the study of who the donors ought to be.
We have discussed who should be the recipients and the
issues of their behavioral and, therefore, their psychiatric conditions
that have led them to need organs. I wish I were as sure that we had
thought about what has prompted people to be donors.
Now, there's no question about donors who are natural relatives
to people who are going to be the recipients, and very little sense
maybe that they are in any way disturbed, although they could be
pressured in ways that if we really understood and looked into the
family status, we might disparage.
At Hopkins, we have the comprehensive transplant program,
where you can donate to a list. And we certainly have seen patients,
people, who have come to donate to the list in ways that I think that
they need help to see that they are not benefitting by this in ways
that I as a doctor would encourage.
We had a patient, a person because she becomes a patient
when she is a donor, who wanted to give because she had lost a child to
kidney disease and thought if she just donated to the list, that it
would be a kind of tribute to that child.
Now, I thought that she was still in a state of grief and
that, although now with the endoscopic capacities that take out
kidneys, it was a lot easier than it used to be, I didn't think
that we were really benefitting this person in ways that would pass
muster in other ways.
And so I want to be sure that in our report because what we
talk about in the donor side is all what kinds of financial benefits
we're giving the donors. And I'm not satisfied that we're
considering what were the psychological considerations that brought the
person to this and whether we as doctors, people who were going to be
doing this, are benefitting the person by going along with their
DR. PELLEGRINO: Dr. Gómez-Lobo?
DR. GÓMEZ-LOBO Thank you.
One really very, very minor point. And it is that in
several passages in the report, the word "donor" is written
when it should be "recipient." I don't know if you
Now, the one thing that I think we should do is perhaps at the
beginning of the report insist that we're really basically confirming
or backing what already exists. I don't think we should attempt
to modify everything, say, that the existing rules have in place,
particularly the UNOS rules.
And I thought that in the documents presented last time in
the original paper by Sam and Eric, it was very well laid out how the
effort to meet demands of fairness and benefit really were invited in
Now, it seemed to me on that occasion that the only place
where certainly improvement on the side of fairness could be made was
in terms of geographic allocation.
So I would suggest that we take a very close look at the
disparities due to geography. I didn't know you could put
yourself on the list in two different places. That would be even
There is an argument there for having something like a
unified national list provided, of course, that the organs can be
safely transported. And it seemed from what I read that that was the
case. So that's sort of a minor point.
Now, I agree with Gil that although we should encourage the
lowering of the demand for organs through wellness, et cetera, the
moral factor should not go into any decision of assignment of organs.
That would be really bad. It would lead to a pre-Hippocratic period
where illness is really due to your fault.
My mother, my Italian mother, always thinks that I am
guilty if I catch a cold.
DR. GÓMEZ-LOBO So that should remain in place, it seems
to me, that the factors and the algorithm should not take into account,
say, the lives of people. I could just imagine what a nightmare it
would be if we even attempted to come close to that. Again, that does
not exclude the education, the making the public aware of the need for
Now, coming to perhaps what is the major point, from
everything I have heard here, from the people who have spoken, I have
become very pessimistic about the demand ever being met, even if there
is a free market, for the very simple reasons that some of you have
mentioned already. The population is growing older. We're not
dying of pneumonia and things like that.
So it's only natural statistically that most of us are
going to reach old age and many of us are going to need organs. And it
seems to me it would be rational to forget that fact. I mean, there
are numerous things that are going to happen just because of the
success of medicine.
So when we discuss the gap between supply and demand, I
would put a very big caveat there that as things are going now and
until some alternative is found, I just think the demand is not going
to be met.
DR. PELLEGRINO: Bill?
DR. HURLBUT: As a point of clarification, isn't it
true that — maybe Dan can answer this — there already are what you
might call lifestyle issues that play in the equation? Isn't it
true that if a person gets a liver transplant and then goes back into
alcohol addiction, that they will not be as likely for the next liver
I don't see why that shouldn't be part of the
equation. I realize the great difficulty of that, of dealing with
that, because how many causes do you take into account and what types
and so forth. But somehow it doesn't make sense to just
arbitrarily assign the organs. It seems like some judgment should go
into where the benefit is going to lie from that.
Just one larger comment to that. Putting together quite a
few of the comments here, it seems like, notwithstanding the bind we
have gotten ourselves into with dialysis, it seems like it's still
appropriate to make the kind of comment you just made and put it into
policy to point out that if we're feeling the imperative of some
action, that there are many regions of human health that are crying out
for with equal force or more force government help if that's what
we're going to dedicate here.
I mean, if we are going to put a huge amount of money into
immunosuppressive drugs, what about vaccination programs? What about
carefree young people? Somehow this doesn't make sense, some of
what is being implied in this process.
That's what I understood Gil to be saying. Is that
DR. PELLEGRINO: Gil is up next. So go ahead, Gil.
PROF. MEILAENDER: Yes and no. I agree with you that,
insofar as you chimed in, I think agreeing with me, that there's
kind of a funny privileged position given to this, that's right.
What I wanted also to say, though, was that I think the
word "arbitrary" is a very tricky word there. I would regard
building into your equation to determine who gets an organ various
factors about how you had lived and so forth to be the arbitrary way of
doing it, as opposed to a kind of a system that blinded one to those
So, see, the language of arbitrary always suggests, implies
some position from which one is in a position to judge, as it were, the
whole of a life. And I'm not confident that we're in that
So I want to take back the "arbitrary" language.
But on the other point, yes, I agree entirely.
DR. PELLEGRINO: Peter?
DR. GÓMEZ-LOBO I'm sorry. Just one point. With
regard to the question of transplant for an alcoholic, I would consider
that factor a factor of efficiency.
In other words, the reason for not doing it would be
because if the person was given already a liver and the person
continues to drink, then the chances are that it would be a bad use of
the organ. But I would be hesitant to go into some kind of a moral
judgment in that case.
DR. PELLEGRINO: Peter?
PROF. LAWLER: Well, me, too. I mean, taking this to its
conclusion, this would be kind of a yuppie organ empowerment act or
something like that.
PROF. LAWLER: The people who have time to get
to the gym and have fake jobs like "professor," can exercise
half the day long would get organs. People who had all the problems
that Carl described and don't have time or other resources to
think about their health and get fat because they just eat what
is in front of them because they're thinking about their kids
in jail and all of this. And so it really is, as Gil says, fairly
On the other hand, that would be my opinion for the first
organ. I think if you misuse the organ you have been given, that might
count against you in terms of getting a second one. I actually see the
And that becomes less arbitrary, simply because if you
prove you can't take care of your organ, so to speak, it probably
wouldn't be a very efficient use of resources to give you another.
And with respect to the immunosuppressant drugs, the
argument was that it's cheaper than putting these people on
dialysis. And that's the only argument that moved me on that
DR. PELLEGRINO: Thank you.
I would like to call on Eric Cohen at this point.
MR. COHEN: First let me just say from our side of the
table, this conversation has been helpful in giving us guidance about
how to move ahead.
Let me make four quick comments, I guess, in my effort to make
some sense of this. First, I guess I feel morally obligated now
to put myself on two cheers or three cheers for prevention.
Everybody I think embraces this. If we could do things to
make our lives fuller and healthier and prevent the demand for kidneys,
obviously we ought to do it. And this report ought to call for it.
That said, we face still a discrete problem of organ
failure questions of how to allocate the scarce organs we have,
questions about the moral principles that ought to govern the system.
This is a subject being debated on op- ed- pages, a subject
being discussed in IOM reports. And I think this Council has a unique
opportunity to deepen the ethical analysis, on the one hand; and, on
the other hand, to offer some precise policy analysis and perhaps some
recommendations. So that's a first point.
Second point, I think Leon is quite right and Dan and
others that nothing we have given here is going to be a silver bullet
to solve the whole problem and give help to everyone who is suffering
on a waiting list waiting for an organ, but the fact that you can't
solve an entire problem or ameliorate an entire crisis doesn't mean
you shouldn't do those targeted things that you can to make things
better and to improve the system.
In a way, we followed this model, I think the Council followed
this model in its report on reproduction responsibility. Certain
major issues weren't taken up frontally, but there were some
targeted policy recommendations that were offered, I think one of
which was adopted by Congress and all of which I think have had
a useful imprint on the public debate. So the fact that this isn't
going to solve every problem, these recommendations, it doesn't
mean they ought not to be considered.
Third, some people have mentioned the issue of cost and the
potential high cost of these recommendations, leading to them not
having much of a chance for congressional or political success. I
think we need to be careful here. That may be right. But we have made
And, again, this is a very preliminary laying out of the
ideas. And to the extent that any of these are embraced, we will have
to do much more rigorous presentation of them.
The effort here has really been to make these targeted, not
to simply say everyone who is a living donor should just have publicly
provided health insurance for the rest of their lives but to say those
health incremental costs that are related to the act of donation,
especially for the poor but perhaps for all donors, the public has some
responsibility in the name of care for the donors to provide for them.
The issue of preventing graft failure and whether a public
investment in making sure immunosuppressive drugs are available to
everybody might, in fact, save money, rather than cost money.
So I think we ought not to be so certain that these
recommendations don't have some hope. And some of them are
modifications of policies that have already been proposed in Congress,
where we could either advance the public debate or put the moral and
public weight of the Council behind them and perhaps get them a better
Fourth and final point, there is always an issue in the Council's
work pace. These are complex subjects. We could discuss them all
in perpetuity and never uncover every stone that deserves to be
— or turn over every stone and complex issue that deserves
to be discussed. And that's really for you to decide how quickly
we want to move.
On the issue of markets, we have had the debate between
Richard Epstein and Frank Delmonico. We have heard an extensive
presentation from Ben Hippen. We had a discussion of Gil's paper,
which took up the question of payment for organs and its meaning. And
this subject was the most extensively discussed subject in the policy
paper that we discussed as one of four sessions that we had at the last
meeting on this subject.
Now, it may be the case that we have not had enough
discussion on this, but we have had a lot of discussion on it. And the
Council needs to have a decision about the pace of its work and whether
we want to slow down and discuss issues in greater depth and more
fullness or whether we want to take the plunge in drafting and see
whether the staff can prepare something that meets the aspirations and
ambitions of the Council. On that question, we are your servants.
And you have to give us guidance.
I can understanding how reading this paper in isolation you can
feel as though we're beginning in the middle, but we're
not beginning in the middle. And this paper is the product of eight
months of work. Well over 200 pages of working papers that have
been prepared on the basis of 4 Council discussions at the last
meeting, numerous, numerous discussions, both at the Council and
far more sessions from the staff with outside experts.
But, again, you have to give us guidance about the pace and
whether we want to move ahead with a kind of aim of getting a report
together for Spring 2007 or whether we want to return to this issue,
take up the allocation in greater detail, take up the brain death
question again, take up the market question again. That's a
decision I think you all have to make.
DR. PELLEGRINO: Questions? Comments? Leon?
DR. KASS: Well, just on this last point. And, you know, I
am one of 16 around the table, but it does seem to me that there's
been an awful lot of work and discussion here. And I at least for one
would like to see — I mean, I trust the staff to produce a kind of
distillation that would be rich, well-argued, with all the relevant
points of view, would be at least presented, and see where we are in
relation to such a draft.
I think there is some merit to getting — if it's
well-argued, the positions are all in there, even if there isn't
agreement amongst us on every point, there is an opportunity I presume
for personal statements on it to expand on various points that are not
And I think there is a contribution to the debate that we
can make based upon what we have done to this point. And I guess I
would trust the staff to produce the kind of document that we could
then all react to, have an occasion to comment on, and revise.
And then if there are particular pet issues that
haven't been properly reflected in this document, the back of the
book has been a well-used place.
DR. PELLEGRINO: Leon, as Eric pointed out, there is a much
larger piece of work, as you know. And I think what you're saying
is the answer in a way to Eric's question of where we go next.
And there is a lot of work that has been done. And I think
the purpose here was simply to get feedback on this aspect of it and
not the whole thing. And so my own feeling is that the next time we
present something to you, it should be pretty much having all of these
issues addressed in some way. And many have already been, as Eric has
So I don't think there's any disagreement here
about that procedure. I think there's simply a tactical question
of having presented these in isolation and out of the whole context was
not intended to confuse you but, rather, to get the kind of direction
you're giving us.
And so we feel, at least I feel, that we're serving the
purpose that we had in mind, but we may have created a little confusion
by dropping it into the middle of the play, as I say. In medias res
always gets you into difficulty.
Dan and then Robby.
DR. FOSTER: One of the things that Leon said is something
that I think we really need. I really don't want to be embarrassed
by this because the failure to just say what you really think that we
thought about this and so forth and so on.
In the material that was sent in that led to the
conclusions about gifting and so forth, Eric, was it clear from the
individual votes that came in that the Council as it now stands is by a
significant majority against the concept of commercialization of this
or paying for organs?
If that's the case, I mean, we considered this. And
for reasons that are in the report, we can't do it. And we now
realize that that cannot quantitatively address this. I mean, is it
clear to you? We never had a formal vote around the table.
DR. PELLEGRINO: No, we have not.
DR. FOSTER: Is it clear to you that that option is out?
It looks like from this report it is clear to you.
DR. PELLEGRINO: Dan, give me the tally on this.
DR. DAVIS: Well, part of the difficulty is that not all of
you responded. In fact, there were only nine responses. And of the
nine, there was only one individual who indicated an interest in
pursuing the incentives in payment option. So we didn't have a
complete tally, but of those of you who did respond, that was the way
it came out.
So I think it's important for us to have the discussion
that we're having because the results of the survey I think are
DR. FOSTER: Well, I think that's right, too. I think
we need to — I don't think nine votes is enough to say what we
want to do. And I think you could get out of this without being
embarrassed by the ethical discussion if you knowledge the fact that we
simply think that, I mean, as a Council, that we don't want to
pursue that view.
But then the minor things that might enhance the current
system may have some benefit. And that would not be embarrassing to
face up to the fact that we have considered this. We realize that what
we're saying is not going to solve the problem, that we might make
things better as they are.
But to just ignore it, I think that would be a huge
embarrassment. There's a lot of — I don't know about the rest
of you, but I get e- mails all the time about this issue. I mean, this
is a very hot issue as to what we should do.
DR. DAVIS: I don't think there was any intent to
ignore it. I think as we thought about how we developed this report
and then vetted, we figured there would at least be two more venues
through which we would take up the issue of payments and incentives.
And this is one.
And then certainly once you see it in concrete in text,
each of you will have the opportunity to react to it. And if those
reactions go one way, then fine. We may need to bring it back for
DR. FOSTER: Well, I want to make clear that I don't
want to have additional long discussions about that. I think we've
discussed it enough. And maybe the correct way is just to get the
whole report out, like we have always done. And then we can respond to
But I do think there ought to be some sense — I don't
know whether today is the time to do that, to take a vote or not, but
DR. DAVIS: I think certainly with the allocation issues
and some of the issues around complexity that Peter has raised, we
acknowledge that. I mean, certainly all of the proposals were offered
with a degree of tentativeness.
The allocation recommendations were offered with a high
degree of tentativeness because we have not had the kind of in-depth
discussion that we have had about other issues in organ
transplantation. So those are in there today just to see which way is
the wind in the Council blowing on those particular issues. And then
we know we have to go back and further develop those. Those are
Just by way of a clarification, the kidney allocation
formula is about to be revised. UNOS is going to open for public
comment a revision that will incorporate net benefit analysis within
the kidney allocation formula. So this is coming down the pike.
And so one of the reasons why we want to put that in there
is because it is going to be very much in the air within that
particular community within organ allocation.
DR. PELLEGRINO: Robby?
PROF.GEORGE: Yes. Thank you, Dr. Pellegrino.
I want to reinforce some points that were made by Dan and
Leon and Mike Gazzaniga. I think it's important to remind
ourselves again that we're not here legislating. And even our
policy recommendations really aren't specific legislative
proposals. We're talking about some very difficult issues here,
particularly I think the issue of commercialization.
And I would reinforce Leon's point that we got into
this in large measure because of our cognizance of the shortage and the
real problem that that creates for people. We have to say something
about it. And we have to face up to the implications of whatever it is
we're going to recommend.
I think it is worth remembering that some of the most important contributions
the Council has made in its reports over the life of the Council
have been simply in putting before the President and the Congress
and the public the best arguments that are being made by well-informed,
bright people on competing sides of an issue, not necessarily trying
to resolve it knowing that we on the Council are divided ourselves
on the issue but just putting into a very intelligible form that
the public can consume the very best things, points that are to
be made on competing sides of the issue. And this is what I would
suggest for the issue of commercialization. It cannot be ignored.
So our contribution I think probably is not to come up with
necessarily a recommendation, although it may be possible for us one
way or another, against it or for it, but just to make sure that the
report really does include the best possible arguments for the
competing points of view.
This is a point on which reasonable people of good will
disagree. And there are important arguments on both sides of the
question or all sides of the question, maybe more than two sides of
this particular question.
And I would reinforce the point that Mike Gazzaniga made.
I do think in talking about the commercialization option, it is
important not to talk about it simply in the abstract but to talk about
it in light of something approaching a more concrete proposal about how
it would work.
Part of my own problem in trying to think about it after
listening to the debate between Richard Epstein and Dr. Delmonico and
so forth was it's hard for me to get my mind around it just as an
abstract debate. I would like to see a kind of more concrete proposal
of how commercialization would work if, in fact, we went down that
Now, I don't know if Mike's suggestion of just an
e-mail to Richard Epstein would get us what we needed there, but
there's probably enough out there in the literature and perhaps
talking with Professor Epstein or others about how they would more
concretely envisage such a plan working might be helpful.
But my fundamental point is really just that I think we would
make a contribution in this area by making sure that the report
makes available to that segment of the public that is really interested
in this the best arguments that are being made on the competing
sides. That in itself would be I think a very great contribution
if no recommendation were made, even if no recommendation were made.
DR. PELLEGRINO: Thank you.
PROF. DRESSER: If we haven't discussed as the Council
this issue of giving preference to younger or older and how that should
be done, I think that's an issue we ought to discuss. I guess
personally I could say if there is a 20-year-old person and an
80-year-old person and they have an equal opportunity to benefit in
terms of how long the organ is going to last, I would say, yes, give it
to the 20- year-old, but you mentioned here to give a point for age,
the number of years. I'm not sure that incremental approach is a
I think some of this is subsumed by ability to benefit. So
that if you have a good medical assessment that says this patient, the
organ is likely to last X number of years or so forth, you can finesse
some of the age issues with — it's just very sticky to get into
age-based rationing based on prior bioethics discussions. So if
we're going to do that, we need to do it in a very rich and
DR. PELLEGRINO: Thank you.
DR. KASS: Mr. Chairman, I don't know if this
is helpful or not, but I'm sort of mindful of where we are in the
session. And it seemed to me you had begun and the staff is also
interested — the conversation is about general things and
how this fits with the larger report.
And I wonder whether you think you have enough input from
this group on the particular nine, is it, nine recommendations that
we've got. I doubt that there's enough time to discuss each of
them in detail, but would it be helpful, some way to get some
expression of support for these things as they now stand or — I mean,
how could we be helpful with respect to the document that is here and
what is before you.
DR. PELLEGRINO: Well, I personally think it has been
helpful in precisely the way I had hoped. I will ask Eric to add his
comment as well.
By getting your comments to this set of proposals, which I think
have been interpreted as perhaps being more concrete than we have
expected in casting them, I think you have been giving us the kind
of direction the staff has been looking for.
We have had a lot of discussion, as has been pointed out,
but when we get down to the specifics, of course, is where always some
clarification had to be needed.
I agree thoroughly with you, Robby. As a matter of fact,
when I undertook this enterprise, which sometimes gets painful, as it
is now, I did it with the very idea in mind to have said it's the
way we should go because we have been going that way. On the other
hand, we need to hear all of you express your opinions. You have been
So, Leon, I think we have been getting what we want.
Everything you have all been saying around the table we have talked
about also. But we need to know where you are. And you have been
giving us direction. And that has been very, very helpful. So at the
present moment, I would suggest the following.
Having listened to this discussion, I think you know we
will be going back and taking a look at the document and getting ready
for a more advanced document, number one.
Number two, there hasn't been time perhaps for all of
you to express your views. And we don't have the time this
morning. I would like to ask you if you would be willing to offer a
synopsis, either personally or write something, about what you think
are the major issues. I would not make these recommendations the total
focus of your comments, as they have not been.
So, without going on and on here, Leon, I think you have
been very helpful. And I think that it is our task now, staff, to come
back with the next steps, which is to take under advisement what you
have given us.
I could have made maybe speeches to almost each and every
one of you on this point, on your points. So I have no great
difficulties personally in absorbing what you have been saying. I feel
it is very important.
Does that answer your question?
DR. KASS: Yes, it does. Well, yes, it does. And it's
welcome. Then unless others would like to do something, Rebecca in a
way raised the question on the allocation issue, about which I
don't know that we have had a discussion. And there are some very
concrete things here.
I'm not sure what my colleagues think about some of
DR. PELLEGRINO: I don't think we do either. And we
will be preparing something on allocation. Dan's already working
on that aspect of it. It was not ready for this presentation, but
allocation will be within that final.
Allocation, cost, prevention, all of these have come up.
And I really think the next point is to get the next step to you in
writing so you can look at it, something that you can look at.
Robby, I think your body language suggested —
PROF.GEORGE: Since we do have just a few minutes, Leon, I
have a sense that there were some specific points that you were going
to make perhaps about 6 and 7 in the document. I'd love to hear
that, at least get them on —
DR. PELLEGRINO: By all means, by all means.
DR. KASS: No. I mean, this is not well-thought-out,
but, I mean, when Rebecca says — anything that sort of smacks
of age-based rationing begins to make her uncomfortable.
PROF.GEORGE: Probably fills her e-mail files as well with
people writing in because I know how worked up people get about
anything that approaches age-based rationing.
DR. KASS: Granting that working out the system would be
difficult and the tacit implication that the life of an old person
because old is somehow not of equal value to the life of a young
person, I grant those difficulties.
But I must say in reading this through, the kind of spirit
that would give preference to youth and in my own case not just youth
but also those young people on whom lots of even younger people depend,
I mean, you know, I've had my kidneys for 67 years. That's a
pretty good run. If I need a new one at this stage, I'm not sure I
have a kind of claim on the system that Bill Hurlbut has with two small
children, other things being equal.
And how you operationalize this and whether you can
operationalize this without doing more risk, I don't know. But if
we are coming to the point that the major candidates for organ
replacement for wonderful stem cell-based regenerative medicine is
going to make all of this necessary, if the major population is going
to be people who just managed to live long enough to need their organs
replaced and this is a privileged expense in the health care system,
you can just see where the direction is going. And I'm not sure.
I'm not quite comfortable with that.
So I was not bothered by the way this was at least
discussed, though I grant that there are some difficulties in making
the thing operational and doing so without invidious distinctions that
would somehow say the life of an old person is not as worthy.
DR. PELLEGRINO: Thanks, Leon.
PROF. LAWLER: I agree that there is finally something
creepy about taking a 20-year-old's kidney and giving it to a
70-year-old guy. And so I feel there's something there. I think
Rebecca is partly right. I don't know how to operationalize this
We don't want to forget the real practical problem that
the general tenor of the existing system, soon to be reformed, is
perverse. You end up on a waiting list. And so on dialysis, with
every passing year, you become less likely to benefit long term for the
kidney. And you get the kidney when you could have benefitted from the
kidney a lot more had you gotten it a couple of years earlier.
So the present system by just rewarding longevity on the
list might well be a very inefficient use of the scarce resources of
kidneys we have. So it cries out for reforms, but all the reform
efforts turn out to be very problematic because of all the factors we
have been talking about.
So I have to admit I just don't know enough. I
completely endorse doing something about the geographical disparity.
The other issues I'm just not clear enough on right now. I think
something should be done, but I don't know what should be done with
DR. PELLEGRINO: Gil?
PROF. MEILAENDER: Two comments, none of which can do
justice to the crux of these issues. Just to put it on the record, I
have a hunch from our previous discussions that I am perhaps the only
person here who feels this view.
I am the one person I think who is not persuaded on the
geography question, but the one thing I would say is I think the
argument if it's to be made should be made without the language
accidents of geography. I do not know what the term
"accident" means there. I do not know what perspective it
presumes. I do not think it's necessary an accident to be a
PROF. MEILAENDER: And that language has certain
philosophical uses. It presupposes certain commitments. And I would
get rid of that language at the very least. I actually have some
problem with the argument generally but at least that language.
And the other one, on the age thing, I would at least try
to go as far as I could with the alternative suggestion that Rebecca
made, namely that the relevance of age may be simply that there is less
medical benefit to be gained and it's less likely to be helpful for
an older person than a younger person.
If it were really the case in some particular instance that
it were much more likely to be beneficial to the older person than the
younger person, it's not clear in my own mind that just being
younger and not having had your kidney for 67 years, only having had it
for 27, you know, it would be decisive, in fact.
So I don't know. Maybe that argument won't work or
solve the problem, but I would at least want to see whether simply
trying to work it out on narrower medical grounds might not get some of
the concern met without seeming to make it turn on simply how long you
live, though I don't deny a certain sensibleness to Leon's
comment as well. I just think there are a lot of problems it raises
that perhaps one can avoid.
DR. PELLEGRINO: Yes?
DR. ROWLEY: I have two comments, one of which is that
I'm very surprised that people haven't raised a question
in the first category, one about unpaid leave for absence for organ
donors. You do say that six or seven states actually do recommend
payment for leave. And this has come up in California with egg
donations and that certain women just cannot be egg donors if they
can't get paid for the time they've missed. So I'm
surprised that people haven't at least raised the question whether
that's a good idea.
And the second thing, I think it would be really
informative, Dan, for you since there are 15 of us, including Dr. Pellegrino, here if, in fact, we upped the numbers from 9 voting to
include those members of the Council who are present on the question of
And I understand what a departure this is in all areas of
donation. And, yet, I also know that it's one of the contentious
issues in California on egg donation, not paying. And so it seemed
rather surprising to me that the only person who does not benefit from
$100,000 that it costs for a kidney transplant is the donor of the
So I would be curious to know with more of us here what the
general feeling is because I want to point out that Ben Hippen
wasn't suggesting that it be one or the other but that we have a
dual system: donation and marketplace for kidney procurement.
DR. PELLEGRINO: Thank you. Thank you.
Well, let me close this session by thanking you again for
making the comments we were hoping to get; giving us the directions
that we ought to be moving in in looking at the next stage; and urging
us, and I think quite appropriately, to bring us down to a more
And I think we served the purpose. I want to assure
everyone that the points they have made have passed to our minds. And
you have helped us to give them some weight.
(Whereupon, the foregoing matter went off the record at
10:04 a.m. and went back on the record at 10:21 a.m.)
SESSION 6: THE ETHICS OF HEALTH CARE
DR. PELLEGRINO: Our next speaker is Norman Daniels, whom
all of you should know or have heard about on this subject. He is the
Mary Saltonstall Professor of Population Ethics and Professor of Ethics
and Population Health, Harvard School of Public Health. Few people are
as well-published or well-read on this subject as Norman is.
We have asked him to address the question which has come
out of the survey we made about topics the Council members might be
interested in. Dr. Daniels is going to make a presentation. And then
Dr. Dresser has agreed to open the discussion. Thank you very, very
Norm, if you don't mind, the question is yours.
DR. DANIELS: Thank you.
It is a pleasure to be here. And I thank you
for asking me to talk about a topic that I have been thinking about for
about 30 years. It shows how slow progress is sometimes.
In any case, what I wanted to do today was to briefly
address three questions. I gave you in your paper background briefing
book a paper that I had written about five or six, seven years ago now.
And I am in the process of just making the final revisions on
a book called Just Health, which is a sequel to Just
Healthcare. And that book contained the core ideas about opportunity
I will briefly touch on those, but I want to go into some
issues that I think go beyond that and also have a bearing on the very
general question that I was asked to address, what does a good society
have to do about providing health care for its population?
Well, I'm not really sure I know what a good society
is. I'm assuming that a good society is at least a just one. It
may be more than that. And so I want to actually answer the question,
what does a just society owe its population in the way of the
protection of health and promotion of health?
To get at that very general question, I want to answer
three questions, why is health especially important? When are health
inequalities unjust or unfair? And how can we meet health care needs
fairly when we can't meet them all?
I think these are very central issues within any conception
of distributive justice for health. And I want to say at the very end
of my comments just very briefly how I would unpack the concept of a
right to health or health care using the answers to these questions.
So the first answer really draws on work that I did some
20.odd years ago, 25 years ago. And I should add that in the other
reading in your briefing book is the chapter from the President's
Commission report in 1980 or '83. It was drafted over that period
And I worked closely with Dan Brock and Dan Wikler and
later Allen Buchanan, who were the staff philosophers connected to Alex
Capron's effort at that time.
They put together a supplementary volume to the Securing Access
to Health Care report that contains philosophical essays on justice
in health. And there was the report of which you had a part.
I was asked to comment on it. All I can say is, well, we
haven't done much that they recommended in 30 years. And it seems
to me that that is the point to be addressed in some way or other in
the outcome of what you do about this, not that there weren't
efforts to try to do some things about what they recommended.
Okay. So the fundamental intuition behind the answer to
the first question is to draw a connection between the importance of
health and the reason we give it a lot of prominence. Often we can
point to other countries where there is universal coverage and access
to health care.
But I think if you actually look at the American system, despite
its imperfections, very serious ones, and huge gaps in access to
care, 45 million uninsured people, we still in principle carry out
some of what might be thought as the principle underlying other
countries' work, namely we think poverty should not stand in
the way of access to health care. And so we have a Medicaid system,
imperfect as it is. And we have Medicare as a universal coverage
system for the elderly.
So if you take those two pieces together, you might draw
out of them an implicit set of principles that would say, in effect,
"We are recognizing the fundamental importance of giving universal
access to health care." But, of course, we have left out the near
poor. And that is a very significant gap of what we do.
Here what I am trying to get at are some of the ethical
underpinnings for thinking that health care is special and ought to be
treated in a special way within developed systems. So the basic
intuition is carried in this argument.
Disease and disability are departures from normal
functioning. I'm taking normal functioning to be equivalent to the
notion of health, a lot of controversy about that, but I'm going to
leave that aside.
The other premise of this argument is that departures from normal
functioning or, let's say, significant ones, impair opportunity.
And what I have in mind — I'll show you in the next overhead
— is the range of plans of life that people could reasonably
choose to pick among given their talents and skills, were they otherwise
So that's the conception of a normal opportunity
range. It is a socially relative notion in that different societies
would have different ranges of opportunities open to people. And
it's relativized to people's capabilities in terms of talents
and skills for entering different plans of life.
The idea is that across all that dispersion of talents and
skills in a population, health interferes in a very systematic way or
bad health interferes in a systematic way. And that is the intuition
underlying that premise.
So meeting health needs protects or promotes normal
function. And so the fundamental conclusion I drew from thinking about
this was that if we wanted to look for a very general principle of
justice that connected the importance of health to our overall concerns
of justice, it might be a principle that protected fair equality of
opportunity. In our society, that is a very widely supported
So I think there is a grip for this idea within American
culture. And the basic idea, then, is that if there is going to be
something like a right to health care, it's a special case of a
right to protection of opportunity in society.
And that is the core idea that I developed in an earlier
book. I think what is different about my thinking now is in the third
bullet here, where I talk about meeting health needs.
When I first wrote Just Healthcare and published it over
20 years ago and the President's Commission in 1980 drew on
the argument about opportunity in the chapter you read, I was largely
thinking of health care as the primary determinant of health in
a society. And lack of access to health care would be the source
of health inequalities in a society. And the inadequacies in delivering
the right kinds of health care to the population would be a way
to characterize the failure to meet the needs, health needs, of
I now have a very different and boarder picture of the
social factors that affect health in a population. Even in the earlier
work, I was always thinking of public health measures as included among
health care measures. So clean water and so on were all in my mind
As we will see as we go on, there is an even broader range
of factors which affect population health and its distribution. And
these are often referred to as the social determinants of health. So
I'll say something about them shortly.
This is a little picture of that core idea about the
opportunity range. And so what I am suggesting is that a
well-functioning effort in all dimensions to protect health for
individuals will keep key individuals retaining what is in the blue
circle, what I think of as an individual fair share of the range of
plans of life that they have.
The red circle is the range of plans of life that's
reasonable for everyone in a particular society to pursue, cutting
across all the differences in talents and skills. So it is the union
in set theoretic terms of all the individual fair shares that might be
The green circle, just to characterize the difference, is
an individual might decide to pursue certain of his or her capabilities
or talents and skills, develop them extensively, and let others lie
fallow. And then one develops a particular subset of the individual
fair share as the effect of opportunity range you're pursuing.
What we do in health care is we often give people a choice
to use medical services, let's say, to restore functioning. And
part of what might drive their individual decision-making is their
concerns about what is important to them given the effective share that
What society has to adopt from a social perspective is
keeping people functioning within the blue circle, normal functioning,
because we don't want to in a sense lock people into previous
choices about what they thought was important to them so that we would
want medical services to restore normal functioning, regardless of how
much of that an individual is intent on using.
So that basically draws a conceptual connection between
health and opportunity and its importance. What I have on this
overhead is some possible grounds or sources for giving prominence to a
principle that protected equality of opportunity because in a sense, my
argument before simply appealed to the fact that a lot of people think
opportunity is important.
But here are some systematic approaches within the theory
of justice. Where there is a strong effort to try to provide
foundations for a principle of fair equality of opportunity in
Rawls' case, that could be connected to intuition I had about the
relationship between health and opportunity.
Rawls's contractarian theory generates three principles that he
calls justice as fairness, the equal basic liberties of fair equality
of opportunity principle; and a principle compressing the inequalities
in income and wealth, making the worst-off ones as well-off as they
could otherwise be, he calls the difference principle.
I am going to come back to that shortly. And that's
the reason I have for mentioning it now. I am not trying to defend any
one of these theories. And the argument I am giving doesn't depend
on defending any one of them.
What I did want to do is point out that several other lines
of work, both of which are critical of Rawls in the last 30 years, also
focus on opportunity. Maybe we're using a slightly different
terminology in Sen's case.
And I would draw extra support for the importance of
connecting health to opportunity from the convergence of these three
different views in this way on an opportunity space as being central to
Sen's view is that what justice is concerned about; in
particular, what we're concerned about when we're concerned
about equality, is giving people access to an appropriate set of
capabilities to do or be whatever they want to be. Well, capability to
do or be what you want is an exercisable life plan within the
So I see this as a terminological difference but
conceptually very much the same sort of space that I had in mind. We
were sort of focusing on this idea independently but roughly at very
much the same time: 1979-80.
I kept the opportunity language because I was trying to
figure out how to extend Rawls. And Sen was anxious to distance
himself from Rawls in certain ways. And so he had this capability
space. But I think they're talking about the same thing.
Somewhat later in the '80s, another theory came along. This one,
in contrast to Rawls and Sen, uses a welfarist view of well-being.
So we're thinking in terms of some sort of welfarist view, desire
satisfaction perhaps, maybe an objective component thrown in by
Jerry Cohen, advantage. But the idea there is that opportunity
for welfare is the core notion.
So the idea is that we are owed compensation by others for
disadvantage or losses in welfare we may have relative to others if we
have been denied the opportunity to develop a life with as comparable a
welfare range as other people. And so this is where the opportunity
So my point is that disease and disability, serious departures
from normal functioning, would on all three of these views show
up as significant impairments of either capabilities or opportunity
for welfare or denials of fair equality of opportunity.
So I'm taking, trying to build on the idea there might
be convergence across a range of theories of justice on the importance
of opportunity space as something that justice has an importance focus
to protect. And I would say that this overall idea is very compatible
with what a lot of people in the country think who talk about
So that's the end of my comments on the first point
about the special importance of health. Health is of special
importance because it has an impact on opportunity.
And we have social obligations to protect opportunity that
can be defended from several different lines of theory. Obviously not
all theories of justice would give prominence to a notion of
opportunity. It wouldn't play a singular and distinct role within
a utilitarian framework. It might not be important within a
libertarian framework. But it is important for a broad range of other
views that happened to coincide on that point with a lot of public
views about opportunity.
Well, let me move on and say something about health
inequalities. This was the second question that I thought was a core
question to address in thinking about justice and health.
Knowing that if you meet health needs, because they are of
special importance, knowing that that is an important thing to do
doesn't tell you exactly which health inequalities are unjust or
unfair because it could be that in a just society, which allows for a
range of inequalities of other sorts, there are going to be health
inequalities that are permissible. So which inequalities in health do
we want to single out as unfair or unjust among all the inequalities we
Suppose we had a religious group that because it engaged in
very safe sexual or dietary or exercise or whatever practices had much
higher levels of health than other groups. Would we say that the
inequality that was generated by that behavior, assuming the other
groups had reasonable access to good information about health practices
and so on, would we say the inequality is unjust or unfair? I
don't think most of us would assume that or conclude that.
And so not all inequalities we see are likely to be ones
that we denounce as unfair or unjust. But there are some good examples
that we would probably pick out that way, including perhaps many race
disparities that we notice in the United States in health, even though
the mechanisms underlying them are not completely clear. And without a
clear view of the mechanisms, we might not be able to pass a judgment
about the injustice or unfairness of a particular inequality. So we
have a general task. How do we figure out when inequalities are unjust
Now, what I wanted to say is that this point does not loom
as a core issue if one thinks health care is a primary determinant of
health in a population because then if you think that's true, so
that the inequalities we see in health are the result of inequalities
in access to health care, then one has a very narrow picture and a very
clear answer about when you think health inequality is unjust. It is
unjust whenever inequalities in access to health care generated the
inequality that we're talking about.
But — and this is going to be a very important point —
many health inequalities, maybe most of the ones we see, are not
attributable simply to inequalities in access to health care. And if
that's true, we have a much different picture to address in our
thinking about justice on this question.
So what I have picked out here derives from work that I did
with two social epidemiologists about eight years ago, eight or nine
years ago: Bruce Kennedy and Ichiro Kawachi. We were Robert Wood
Johnson investigators together. And I was caught up in a lot of their
work on the social determinants of health.
And we together decided to think through what some of the
implications of that would be for justice and health. And that's
where some of what I'm about to say next comes from.
What we know, these are sort of four general points that I
think nobody would disagree with in the social science literature about
social epidemiology. There are observed socioeconomic gradients of
health that vary with policy and are not simply dependent on the laws
One way to illustrate that is — I had a graph, but your
instruction said no more than 15 slides. So I followed the rules. Now
you'll have to listen to me say what I could have shown you.
If you look at a slide that graphs on the vertical access
life expectancy, say, by country and across the horizontal access, it
graphs gross domestic product per capita, so we're looking at
what's the impact of aggregate wealth in a population on life
expectancy in that population, you get a curve rising sharply on the
left and tapering off as it goes to richer and richer countries.
What this graph generally suggests to some people is that
there is a definite impact of wealth on health, especially, say, in the
low/middle-income range, below 5 or 6 thousand dollars Gross Domestic
Product per capita. Above that, the effect of wealth is very hard to
But one of the striking features about this graph if you
look at it carefully is that variation, even among very poor countries,
overwhelms this effect of wealth on health in the aggregate.
So that you find very poor countries, like Cuba or like the
Indian State of Kerala or like a middle-income country like Costa Rica,
that have health outcomes that are on a par with advanced industrial
countries or just about there. At the same time, you have other poor,
equally poor, countries whose life expectancy might be 30 years less
than you find in the developed countries.
So wealth is not the decisive factor. But coupled with
policy, how to invest your wealth, for example, in Kerala, this is a
state of India that has a matrilineal history of transmission of
property. It provided a fertile ground for not disempowering women, as
they were in many other South Asian contexts. And when a left wing
government in Kerala started to emphasize the importance of investment
in education, even for women, women were not excluded from this and
there was a long cultural background to support it.
So there are historical accidents that provide a climate in which a
social policy can take root. And what the effect in Kerala is is
something we have observed many places.
Literate women do a much better job of protecting the
health of their young children and getting them health care that they
need and getting them access to better opportunities, work, and other
things later in life.
So this fundamental investment in human capital makes a
difference. And it has a huge impact on the distribution of health in
a population. So that's part of a way of illustrating the point
about socioeconomic gradients not being matters of laws of development
but varying with policy.
These gradients, I might add, operate across the
socioeconomic spectrum. So it's not simply a gap between poverty
and non-poverty. It has a big impact in middle-income ranges.
The steepness of the gradient is affected by the degrees of
inequality in a society. There is a raging controversy in the
empirical literature about a thesis called "the relative income
thesis." I won't go into it unless you ask questions about
it. But it doesn't affect the main point that I'm trying to
The causal pathways are under investigation. What we know
is a lot of correlational literature about the importance of these
determinants. They're called determinants as if they're
causal. But what they really are are associations.
There is a book by Michael Marmot, which he is trying to attribute,
a book called The Status Syndrome. And he looks a lot
at status differences of people in different work settings and otherwise.
And I'll show you a slide coming out of his work in a second.
In that, his basic picture is that the mechanism through
which this works, through which a lot of the socioeconomic gradient
works, is very ancient. It goes back to the effect on immune systems
of hierarchies, social hierarchies, which we can find among animals and
others and so on.
So this is a particular causal hypothesis. I'm not
giving any credibility to it just by mentioning it. I just want to
show you this is what these hypotheses, these associational hypotheses,
suggest as avenues to explore.
This is a slide from Marmot's work, a very famous
picture. This is the Whitehall study. And the reason I mention this
is it's very important for people to understand that this is done
in Britain, universal health care.
All the civil servants talked about here are none of them
poor. They were all making a decent minimum income or better. They
all have basic educations. They're all literate or more. They
have gone through British primary school and so on.
And what you see in the vertical columns above the bar, the
horizontal bar, you see administrative and professional and executive
levels with a much lower risk mortality rate than the worse-off groups
who fall below the bar.
And if you draw a line of these bars, you have got the
socioeconomic gradient of health in a part of a health system that has
universal coverage and in which significant health inequalities remain,
despite the presence of universal access, basic education, and various
— the lack of real poverty. Okay?
I find this striking. This is a very robust finding. It
is replicated all around the world with many measures of health
outputs, disease.specific, for example, various measures of
cardiovascular. Some diseases are not so sensitive to this, certain
cancers, but other things, like diabetes, heart disease, and so on,
show up as very significant factors.
So this is a very fundamental thing for people in bioethics to keep
in mind. Health care is very important, but it's only one of
the determinants of population health and its distribution in a
So what we owe each other is a proper distribution of these
other determinants if we think health is that important. And if, as I
do, we think health is important because it protects opportunity for
people. Then other factors about social justice besides simply access
to health care are going to become very prominent in thinking about the
distribution of health in a population. So this I take to be a step
beyond the way I was thinking about this problem 30 years ago.
PROF.GEORGE: Could I just ask you to walk us through it a
little bit? I am having trouble distinguishing the colors except for
the darkest one there. Can you just tell us who is who here very
DR. DANIELS: Sure. Your tallest bar is your
administrative, the highest levels within the system. This is your
administrative level. This your professional. I think I misstated.
So this will be your clerical. So these have twice the mortality rate.
These are the other of the other means, like manual workers
within the civil service, janitors. These will be your white collar
clerical workers. These will be your professionals within those.
These are your high-level political managers and so on of the British
So what you see here is socioeconomic rating. The poorer
you are, the higher your mortality is. And this is just the finding we
find all around the world.
The initial data on this, I might add, was Vershau did
studies in the mid Nineteenth Century, 1840s, looking at health by some
proxy measure of status. And what he found was the same sort of
And I know it won't be a happy thought to entertain,
but Engels did the same work in the mid Nineteenth Century looking at
housing size on streets that were sort of a gradient of wealth measure
and then in neighborhoods. And then he found that health levels varied
with the house quality in the neighborhoods he looked at.
What we found in the social epidemiology literature is, for
example, that big multiplying effects in the gradient of health take
place when you combine residential segregation in the United States
with lower levels of education, with lower access to jobs, and so on.
When Michael Marmot gave a talk at Harvard last year, he
used your fair city to illustrate this problem. He said if you get on
the Metro in downtown Washington, for every mile you ride out towards
Rockville, you increase life expectancy by one year. And that's a
socioeconomic gradient of health.
DR. HURLBUT: From what you just said about Engels, if I
understood it right, it wouldn't be every mile out but what your
house looks like in the neighborhood you live in. Isn't that what
you just said?
DR. DANIELS: Well, he was taking the house quality by
street to a rough indicator of wealth of the people who owned the
DR. HURLBUT: The reason I ask you that is because
there's a study coming out in the American Journal of Public Health
done by researchers at my university, Stanford, that shows the death
rates for poor people living in rich neighborhoods are actually higher
than for the equivalent.
DR. DANIELS: Yes. I heard that result. And that would be
quite compatible with some of Marmot's thinking about this because
the focus on status and your relative perception of your status might
make a difference in that.
DR. HURLBUT: So the implication is —
DR. DANIELS: But that wasn't really what Engels was
doing. He was just looking at a crude measure of size.
DR. HURLBUT: But the implication is that, even beyond
immediate community access to education and services, that your sense
of self, your relative status plays — and one theory being the immune
system and so forth —
DR. DANIELS: Yes.
DR. HURLBUT: I mean, there must be other —
DR. DANIELS: Well, this is exactly the Marmot thesis
because he will look at good, clean workplaces, which are organized in
certain ways and have a certain internal social structure with
different kinds of demand and control on the different people playing a
role within that workplace. And you will get a gradient of health
depending on how much control you have over your work. And this may
have a lot to do with self-perception of something like self-esteem.
DR. HURLBUT: It raises a pretty troubling prospect because
since everybody can't be above average, it implies that there is
some kind of an effect of self-perception that you can't address.
DR. DANIELS: Well, when my kid went to school, everyone
was above average.
DR. DANIELS: No. I agree with you. Yes. I find the
Marmot work raises very troubling, concerns because it cuts a little
deeper than simply thinking about what I am going to say, which is the
distribution of the key associated factors in the determinants of
health. So I will come back to your point in a second, but I am
worried about time.
So if we extend this opportunity base to the social
determinants, this opportunity view, then what it says is that the
things that we count as health needs are what we need to promote,
maintain, and restore normal functioning and includes standard public
health measures as well as medical care but also a broader range of
determinants needed to promote normal functioning.
So there are obvious basic things, like income, wealth,
education, security, basic liberties, political participation. And
there is broad literature on the effects of social cohesion and related
ideas, like self-esteem, in Marmot's work that may be harder to
think of how to distribute compared to the other goods.
Nevertheless, the picture that occurred to me some seven
years ago or eight years ago, when I did this work with Kennedy and
Kawachi, was that if you took Rawls' principles of justice just to
illustrate what a theory might do, the first principle being equal
basic liberties, including a strong emphasis on political participation
and protect institutional basis for political participation, fair
equality of opportunity principle that on my extension would include
health and public health, medical and public health issues as well as
education, which he clearly talked about, and other early childhood
interventions, plus constraints on the amount of allowable inequality
so the worst-off would be made as well-off as they could be and so on.
If you had those principles working, then what the
associational studies, the correlational studies suggest is that you
would flatten the socioeconomic inequalities of health as much as you
could conceivably do through that.
Now, maybe there are other more fine-tuned issues that that
is not addressing, such as the self-perception of status within certain
settings. So I leave that aside as an additional issue.
And so I think that this suggests to me is that we need more knowledge
about the causal pathways. And we need some guidance about which,
but we do get some guidance about which inequalities are unjust,
namely the ones that result from an unjust distribution of basic
goods, like education, income, wealth, and so on.
There might still on a Rawlsian view be a residual
gradient. So there will be some inequalities that remain. And then
the question is, what do we say about them? Are they unjust or just?
And I think the theory is not clear on how to answer that. And we
could have some discussion of it. But I am going to go on.
The last set of points I wanted to make in any formal
remarks is an answer to the third question. So the picture I have in
mind here goes something like this.
I have tried to give you a very general principle, fair
equality of opportunity, to think about and use in the guidance of
access to health care, public health measures, and even broader
concerns about social justice in the distribution of the other
determinants of health.
The problem is that these principles under-determine very
important specific resource allocation questions that we have. Since
justice requires that we set limits; after all, many important goods
compete with each other, our resources are not infinite, they're
finite, the conclusion I draw is that the general principles we seem to
favor are too general and their applications too controversial to
answer some of these specific questions. And I'll illustrate that
in a second.
Because that is true, we have to retreat from some of the
direct appeal to these principles to supplement the principles or the
goal of seeking opportunity through health with a concern about fair
process. Let's set up institutions appropriate at different levels
of resource allocation decision-making, in which there is an
appropriate kind of deliberation about these unresolved problems. And
reasonable people will disagree morally about what to do about them.
And that's the context in which this kind of resource allocation
decision ends up being made.
I have given a label, "Accountability for
Reasonableness," which is sort of cut off at the bottom there, to
the four conditions I'm going to describe in a moment for the
Just let me illustrate what I mean by an unsolved rationing
problem. There's been a lot of philosophical discussion over the
last 20 years of the set of unsolved distributed problems. One of them
is an aggregation problem. How do we aggregate modest benefits to many
people and compare it to significant benefits to a few people and
A straightforward cost-effectiveness analysis would say any aggregation
is conceivable, but we maximize our health investment at the margin
to get a return on it. And that's all there is to it.
Similarly, a cost-effectiveness approach to this question, how
much priority should we give to worst-off individuals, is none.
We have just simply maximized. We look for the best maximization
of health benefit per dollar spent. And it doesn't matter who
gets the health benefit. The standard way to put this in the cost-effectiveness
literature is to say a qaly is a qaly, whoever gets it wherever
in their lives they get it.
That maximization strategy doesn't coincide with how a
lot of people think about this issue. So some people want to give some
significant degree of priority to people who are worse off. That's
just shown up in a broad range of social science measurements of
people's attitudes towards this problem.
They don't want to give complete priority to the worst
off. They're not maximiners because they know that other people
have claims on resources. And you wouldn't simply do very little
for the very worst-off people and leave everyone else out. You
don't want to set up a bottomless pit on resources, pouring them
into the absolutely worst-off cases with the lowest return.
But as soon as you're not a maximizer or a maximiner,
you're in an unprincipled, uncharted territory in the middle. Your
trade-offs you make are somewhere in this middle ground.
And we don't get clear philosophical guidance from
philosophical work on this, exactly how to draw these lines. The
social science literature has a lot of variance in any of the answers
it tries to give to any of these, probably hiding a lot of moral
disagreement and not simply some standard variation among people.
So I see this as one of a family of unsolved problems.
And, yet, I think in response to those problems, what we need is a fair
deliberative process in which people can think about and argue about
the trade-offs that are involved in these cases and arrive at a
conclusion based on their best judgments about what to do.
So this is a retreat from principled work in theory of justice
to supplement a principled account with a procedural justice view
that at the margin, we have a lot of unanswered questions that we
have to solve by appealing to fair process.
So the general conditions that I think have to apply on such a
process — and Jim Sabin and I wrote a book called Setting
Limits Fairly, which is an elaboration of this account. We're
putting out a new edition of that this year. There's a very
important publicity condition in which the rationales for decisions
have to be made very public and clear to people.
You try to involve as broad a range of stakeholders in the
decision-making as you can to vet the kinds of reasons that are being
articulated and to play a role in selecting the reasons that they count
as relevant for making a particular decision. You want a revisability
opportunity for appeals in light of new information and failures to
notice that a general decision doesn't necessarily apply to
individuals in the same way. And you need to make sure that these
conditions are met.
So this particular account has had enormous influence, not
in the United States, I might add, although I have been arguing with
people in CMS that more of these conditions ought to be included in the
thinking about resource allocations there. But they played a role in
thinking about the design of the British National Institute of Clinical
I'm working with the Ministry of Health in Mexico to
put into place an attempt to build on these principles, a framework for
making decisions about incremental increases in a catastrophic
insurance plan they have just introduced for the uninsured population
in Mexico, 50 million people.
So these ideas are having an impact in northern Europe and
elsewhere. And I think they really were developed out of the American
managed care private for-profit context, which I took to be the hardest
case. But their uptake is elsewhere right now.
Okay. Last couple of comments. What falls out of this in
thinking about the notion of a right to health or health care? First
of all, I want to make it clear when I talk about a right to health, I
am talking about obligations people might have to arrange the socially
controllable factors that affect the distribution and levels of health
in a population, to do that in a reasonable way, that if one becomes
ill, despite the proper arrangement of those socially controllable
factors and you die anyway, no rights have been violated.
So this is not an attempt to say we have a right to health
in a very direct sense, but we do have a right to the health product
that would result from the proper arrangement of the factors that
produce health in a population and distribute it fairly.
So the point I made earlier is that just health, justice in
health, requires a broader thinking about social justice in the
distribution of other goods. But if one starts to think about health
care — and now let's just say for the moment let's talk about
medical care — then the entitlements that arise are going to be
contingent claims to a reasonable array of health care services.
And the reasonable array is society- specific. It's
going to partly depend on levels of technology development, resource
possibilities, personnel availability, and so on within a given
society, but reasonable decisions have to be made with a goal of
protecting opportunity in health but done through a fair process that
resolves some of the unsolved problems.
So the reasonable array is determined by a fair process in
that way. Some specific implications are that it would probably give
some significant priority to treatments, including prevention of
illness, over mere enhancements.
I think there are some non-treatment conditions that use
medical services that in my view personally are defensible on other
grounds of justice. There maybe disagreement among you, but I would
include non-therapeutic abortion in that category. But there might be
others as well.
If you have a reasonable array determined for a population
and the population is in a universal coverage system, then it may be
possible to take advantage of appropriate claiming across the life span
for all age groups. And there are trade-offs that take place by not
doing that in our fragmented system.
So under-investment by employer-based systems in preventive
measures means that we may, in fact, have worse health outcomes for
elderly adults covered in a public insurance system.
But if one internalized the externalities of thinking
through all those trade-offs in a universal coverage system that worked
over the life span, one might think through in a better way how to
allocate resources in that way that produced equity across the life
And I think a view like this ends up giving very
significant protection for people with disabilities, but I won't
say more about that now.
In fact, I think I will stop any further remarks I make and
give as much chance as possible for discussion.
DR. PELLEGRINO: Thank you very much, Dr. Daniels.
Dr. Dresser? Discussion?
PROF. DRESSER: Well, first I want to thank you, Norman,
for your work. I think you made the most sustained and systematic
inquiry into justice and health and bioethics from the perspective of
both moral theory and practical application. So I really appreciate
I am going to ask some questions designed to help us with
our project. So here we are, this group, trying to think about what
kind of a contribution we could make to this debate today knowing that
there is this longstanding discussion that hasn't produced a lot of
So one question is your analysis finds that justice
requires us to reduce inequalities linked to health status. And you
rely on Rawls' social contract theory of justice to make this
You mentioned a few other moral theorists. In the paper,
you mentioned some disagreements with a few of them. But I wonder if
you could say more about how different theories of justice would
approach health inequalities and perhaps not even a theory of justice
but different approaches.
Our group is a group of people with I think different views
of justice. And also we're trying to write something that is
useful to people in this country who have widely different views of
justice. I think we would like to bring in as much different material
as we could on this matter: pros and cons. So I wonder, can you make
arguments for reducing health inequalities based on different theories
The second big question is, what are the values that we
express in our current system? I think we always say that we want to
reduce inequality, but we don't act that way very much. I think we
show a higher tolerance for inequality than most other developed
So this is tolerance for wide inequality and we can never have
just access to health and health care. Are the two mutually incompatible?
And the third one I apologize. This is a special interest
of mine, but I do think it's relevant. Our group has spent a lot
of time on research ethics questions. So the kind of health system we
have is related to the kinds of research that are done.
So what are the implications, if any, to your approach to
allocation of resources, to biomedical research? What would be a just
approach to allocating resources for research versus demonstrated
health care and research? Within the realm of research, are there
implications for what things are targeted, the types of research?
DR. DANIELS: That's a large set of questions to come
back to. Well, the first question you asked is to say more about
different theories that might have a bearing on health.
I was invoking the other theories of justice, ideas that Rawls
and Sen and Cohen and Arneson and so on, largely to in a sense borrow
from them more systematic attempts to discuss the ethical foundations
for talking about opportunity and a principle protecting opportunity.
If I were thinking about this from the perspective purely
of public policy, I would not necessarily try to ground it in a set of
philosophical theories about which no two philosophers can agree
anyway. Instead, I would look to what I take to be very widely held
social values and judgments.
There are very, very few people in this country who will
not pay some form of homage to the idea that this is a country in which
opportunity is valued and equality of opportunity is valued, fair level
playing field and so on.
Now, in practice, we do many things that don't sustain
that view. The question is, what do you think the purpose of public
policy is? Is it to capture what people happen to think in a moment or
be willing to tolerate in a moment or is it to provide some leadership
that can move a society in a direction that it ought to go regarding
the protection of opportunity, which it says it's interested in but
often doesn't see how that is harmed by various other policies that
are put in place?
So I would try to keep my eye focused on the very general
value that I think is widely held, even if the details about sort of
how to achieve it end up being pursued in confusing ways and maybe even
misleading ways through some public measures that are undertaken.
So I guess I think, for example, our recent tax policies
are not promoting opportunity in an equitable way across a population.
And this goes back prior to the current administration. If we go back
a couple of decades and start to look all the way back to the '70s
at a whole set of policies which have produced widening income
inequalities in this country, leaving very large portions of the
population behind, these are the factors that will tend to promote
health inequalities over time.
The status differences that emerge in people's mind out
of this, there's much more context in which to have that happen.
So I'm imagining that there are many policies that are activated in
the name of promoting opportunity. Federist people can spend their own
money. That actually may mislead people about the direction in which
opportunity can be best pursued.
So I would not necessarily go to a range of different
philosophical theories because I think this is in some ways fairly
well- explored territory that theories are not going to give a
converging answer on this.
I tried to provide a convergence out of theories that are
critical of each other, but they're all sort of on one end of a
scale of if you take it as moving away from — they're all
concerned about something to do with inequality of outcomes.
Okay. The second question you asked is what values are
reflected in our system and regarding the tolerance for inequality. I
was already speaking a bit about that. I think in our system, we do
tolerate inequalities to a higher degree than many other developed
countries in the rest of the world. Is that a good thing or a bad
thing? And what can we do about it?
Well, I guess in my own view, it seems to me I'm not
such an egalitarian that I am interested in some form of strict
equality across all kinds of goods and so on. I want to operate in a
framework in which I imagine a broad range of inequalities stimulates
risk- taking and provides for growth and so on. So I don't want to
rule those sort of fairly widely held beliefs out of the picture.
The question is, what are the constraints that one puts on
that? And I think, again, this goes back to the question of, what is
the role of conclusions about what the public now thinks about
something? Is that determinative policy or is it something that policy
can alter over time?
If I don't like a picture that says policy should
simply be an attempt to construct what we take public opinion to be a
proxy vote for, we have done surveys, we know what people think.
Let's view that as if it's a voting system and try to move in
that direction because the public may not have thought about certain
things very well or carefully or certain trade-offs it has to make very
That's why deliberative bodies that are supposed to be
making decisions and that according to our Constitution are supposed to
deliberate and not simply vote just as their constituents think. Those
bodies are supposed to think through what they think the public good
is. The public good may be something that can be pursued only by
partly leading the public in certain directions. And obviously there
are corrections. You go in the wrong directions. The public will
So my own view is not anti-democratic. But it is a
suggestion that good progress towards social goals can be made only if
we have an effective deliberation about them.
PROF. DRESSER: I guess what I was trying to
say, though, is there has to be some compatibility. I mean, the
people in politics will not lead unless they hold certain values.
I mean, you have to have thoughtful leaders committed to something
and a representative democracy that's going to be somewhat reflective
of their constituents.
I guess this goes back to my first question. I certainly
take the value of the opportunity approach to this problem, but I am
hoping that we can also bring in other approaches to try to build more
appeal to a wider range of people in politics and the broader community
who would say, "Well, okay." But that doesn't really
persuade me." What other good things would come of this?
DR. DANIELS: Let me mention a couple of things that might
come of, say, a universal coverage system that have already been
pointed to by various people.
One of the constant complaints we hear is the enormous lack
of a competitive edge that our businesses have in recovering the costs
of health care as compared to other places, where they're more
broadly spread across the whole society.
So if you had a universal coverage system, you might, in
fact, create a context in which American industry could better protect
certain kinds of jobs. And that itself contributes back to health.
I also think that if you had a system in which there was a
— if you had a system in which there was perception that an important
piece of security for people was being provided for everyone by the
system. And your loss of a job didn't necessarily mean you were
going to lose health care and various other goods like that.
Then you might build respect for the role of public
institutions in securing and protecting people. We know that public
attitudes towards the value of what government does is largely affected
by what government does. And so we see in many countries enormous
support for highly strained systems that are funded at much lower
levels than ours, sometimes as much as 30 to 40 percent what they are.
And, yet, they produce comparable health outcomes, maybe better,
usually better, with higher rankings of public support for the system
than we get here.
Well, that's an interesting fact. So I'm thinking
of social cohesion as a possible benefit that comes out of this. That
is not itself a health benefit but might, in fact, have health effects
for the reasons I pointed to before.
So I am thinking that there are a lot of goods that would
come from the securities that you would provide a population with a
system that gave them universal access.
And if you go back to the last attempt at that, right at
the early Clinton years, I was on the ethics working group of that task
force. And most of us did not like the design of the plan that we were
working for, which had been more or less decided on political grounds
before the task force was assembled.
And if you did, I did an informal survey of everybody I
encountered and asked them what would be their favorite plan.
Two-thirds of the people I surveyed informally would have preferred a
different plan from the one they were working on.
Nevertheless, most people said, "We'll do this
because we think it's better than what we have." And
that's the compromise everybody was willing to make.
Well, that plan obviously was a catastrophic failure for a
range of reasons, which are worth discussing. But my own sense is that
the fundamental lesson that I did not draw from the failure of that
plan is that the American public does not want a universal health care
system. I think the American public got fed up with certain messages
they got about how complex this would be.
I think the large employers, who were backing, initially
backing, the plan decided they could get their costs down without
getting entangled in the enormous apparatus that was being set up. And
there were a lot of people who pulled away for those reasons.
So I think that one shouldn't infer from that that the
American public did not want a solution to this longstanding problem.
DR. PELLEGRINO: Dr. Rowley?
DR. ROWLEY: Well, I appreciate both your comments to us
and also some of your writings. And I want to follow up on this last
point. Obviously there has been a major change in the Congress due to
the election. And do you think there is a possibility that one could
develop a plan that would have more general support and really return
to the notion of universal health care?
DR. DANIELS: Well, I'm not a politician. And I
don't know how to read this very complicated Congress that was just
elected because it's not clear to me that it was elected for these
DR. ROWLEY: No. I understand it was an anti-Iraq war
DR. DANIELS: Well, that's part of it. And
maybe there were some other things. But, nevertheless, you know,
I'm just not an expert at thinking through what that means,
but I'm an optimist in the following sense, that I think there
are a lot of people who are very worried about health care in this
country who are very negatively impacted by job insecurity and worries
about beingin and out of health care coverage and that this is a
It cuts across a lot of different parts of the country.
And anybody who came up with a good proposal to address this problem
that I think would — if it were done in a way that did not run into
the enormous opposition that not the last one but the previous efforts
did from physicians themselves. No reform could take place without
some significant support from physicians since they have to work in it.
But also, you know, we have invested so heavily since the
early '90s in capitalizing certain kinds of health delivery
components in a private way. They would not become a piece of inertia
that one has to incorporate in a system.
So exactly what the design would be to accomplish this
I'm not sure. I think it gets harder with each effort and harder
the more costly it is. And it's more costly.
You know, American unit prices are the highest in the world
by a long spell. And the constant mantra we hear is that competition
will solve that problem.
But in certain ways we have more forms of market
competition than other countries. What we don't have is a
reasonable balance of monopoly and monopsony of powers.
A good example of that is ability for Medicare and Medicaid
to negotiate drug prices. In no other country would the law have been
designed the way we did it because in the name of competition, we
basically have emasculated the purchasers.
DR. PELLEGRINO: Dr. Gómez-Lobo?
DR. GÓMEZ-LOBO Thank you for your exposition. I thought
it was very insightful. And I think that it's very important to go
through the problems of health to be underlying conditions to be
produced as to how an equal distribution of wealth and income produced
these health inequalities.
On the other hand, it seems to me that you're engaged in enough
of a fight here. And if I just think about this philosophical side
of it — I wanted to ask you this. Perhaps you did discuss
this with your former colleague Robert Nozick because you have on
the opposing side precisely what you have mentioned, this notion
that distribution of wealth and income is almost socialism, that
freedom to choose would be lost, et cetera.
Now, what I am interested in is philosophically how you
face those objections, which I think are deeply embedded in the
American public these days, in spite of the fact that I think it's
true what you say, that there are more and more people worried about,
say, job security than the, well, 42.45 million uninsured. Could you
elaborate on that, please?
DR. DANIELS: Yes. Well, this is an invitation to go into
highly contentious philosophical territory. Look, there was a lot of
discussion of the self-ownership ideas that Nozick put forward. And
there has been an awful lot of philosophical work in the field since
then that raises other ways of looking at this issue than the way that
the debate was cast in the mid '70s in the conflict between, say,
Rawls and Nozick.
Sen's discussion, for example, has caught very wide ear
globally, not so much in the United States except among my students,
who all in the School of Public Health are very, very enamored of this
idea that what one is concerned about when you try to generate health
in the public is the development of capabilities, people to do or be
various sorts of things.
So a lot here, this goes to the question of choice. This
is the reason I raised this. What are the constituents of the kinds of
choices we want to see people be able to make?
So one of the constituents of the kinds of choices we want
people to be able to make is that they have the capabilities to pursue
various goals that they would otherwise be able to pursue. Were, for
example, they healthy or not disabled?
And so the fundamental issue here is, should we think of choice
as something that is constrained in this way by social structures
that restrict our ability to remove certain kinds of obstacles from
people or do we see choice as something that is more expensive and
needs to be facilitated by the kinds of things we could do; for
example, by keeping a population healthy or well-educated?
So concerns to distribute this in a way that lets people do
what they otherwise have the ability to do in education, for example,
would be a kind of redistributive component that fees into the
importance of choice.
So the issue wasn't choice versus no choice. The issue
was, what are the conditions under which choice has meaning for a lot
of people? So my cut on this problem is a little different from the
one that you point to in Nozick in that I think that social conditions
create the conditions under which choices are meaningful for people.
And we can expand their autonomy in appropriate ways.
DR. PELLEGRINO: Dr. Carson?
DR.CARSON: Yes. Thank you very much for that
presentation and for the lifetime of work you have done in this area.
As a young person growing up on the wrong side of the tracks, I
benefitted greatly from the medical assistance system. And obviously
it encouraged me to go into medicine.
You know, the standard quote is 45 million people in this
country who don't have health care insurance. Of course, we know
that they do because they go to the emergency room.
That's something that I call inefficient beneficence in
our society because, you know, it costs us an awful lot of money to
take care of those people in our emergency room system.
And I wonder if perhaps more effort should be placed into
creating perhaps a national system of clinics, where people get taken
care of just as effectively but at a much lower cost and where there
are people who are actually concerned when they come in there with
their diabetic complication about the diabetes itself and getting that
under control. That's number one.
And, number two, you know, back to the wellness and
prevention issue, you know, there are a couple of groups in our
society, well. known to us in the medical profession, the Mormons and
the Seventh Day Adventists, who tend to live six to eight years longer
than the rest of the population. These are clearly lifestyle issues.
And the things that they do are not expensive things.
I wonder if there could maybe be more emphasis placed on
some of those lifestyle issues, not only for the disadvantaged but for
DR. DANIELS: Those are both good points. I am
all in favor of a more efficient system than our emergency room
system. And there are different things that one could do, even
within a universal health care system you might well want, neighborhood
clinics of various sorts to improve access for people in certain
neighborhoods, obviously to provide, as it were, ambulatory care
centers that would pick up and provide some continuity of care for
people who otherwise don't have it.
So I am all in favor of that. The question is, how does
one fund it? And is it part of a universal coverage system? Why
shouldn't it be part of a universal coverage system?
So I see it as a tactic to be used and explored, but I
wouldn't want to make it a substitute for a broader solution to the
access problem for the population.
You put your finger on it. You called it a beneficent
inefficiency. The Institute of Medicine calls it too little too late.
And they're making a point that if you unpack the inefficiency
you're talking about, it's not simply that there are increased
costs if people go to emergency rooms.
If one actually looks at measures of mortality and
morbidity rates for people who are out of insurance for significant
periods of time, they're higher. So the care they're getting
is not the same as or early enough to prevent the kinds of serious
conditions that people, other better insured people, get. And this
does add to inequality that's already created by the fact that the
inequalities in background conditions make more of these people sick
more than others.
DR.CARSON: And it also adds significantly to the cost
because it costs five times more to take care of them. So we're
already spending the bucks.
DR. DANIELS: Absolutely. You know, I was on one of the
Institute of Medicine subcommittees that worked on that six-volume
report on insurance. The last one came out a couple of years ago. And
one of the — we tried to put a dollar value on, as it were, what was
the unreimbursed care that was given and what additional money would
you need to meet the unmet needs and so on. And it's peanuts in
the American health care system.
There were at the time — this was about three or four
years ago. People were talking about $35 billion of unreimbursed care
being given. And with another $35 billion, you would have met the
unmet need. So the opportunity cost of many things we're doing is
partly right there.
I never did answer the question on research. Did you want me
DR. PELLEGRINO: Yes. Sure. Dr. Rowley, you're next
DR. ROWLEY: Well, I am trying to think of solutions. And
I agree with everything that you said. And I, too, as a physician
DR. DANIELS: Well, you get an A.
DR. ROWLEY: — support universal health care and think
that it isn't going to cost that much more if we did it given the
other costs that we're already bearing that aren't very
But I was struck, both in your paper and in your comments, about
the matriarchal society in Kerala and how, at least measured by
health, it has been reasonably effective.
And should we do much more in this country about
emphasizing education for women? Now, I understand that in one sense
we have universal education. I also understand that women are
increasing in a proportion in higher education as students.
But, even so, there are a whole lot of poor both black and
Hispanic women, who I think if they were especially encouraged that
they have a unique role to play might be more effective in helping to
combat some of the problems we have.
I am interested in your assessment of this and any
information you might have.
DR. DANIELS: Yes. Well, I mean, as you said, over 50
percent of college enrollments are female now and, especially as this
is happening in many professional schools as well, more female medical
students than male and so on.
So there has been some sort of revolutionary change in the
distribution of that. As far as —
DR. ROWLEY: But they're not the care-givers of the
poor children that are at greatest risk.
DR. DANIELS: Yes. And, which is never going to happen, if
I were given the chance to design a policy that would address these
issues, I would place a lot of emphasis on training programs and
job-training programs and education programs for young adults and push
it back so that there were clear signals that these tracks were open to
And I would put a lot of investment in early childhood
intervention programs, like the HeadStart and other things, that
actually have very good social science positive results behind them
because my own sense is that these would be very good ways to engage
women and men.
I think the problem can't be addressed just through
women. It's very clear that if one looks at the major causes of
death among African American men, a lot of it is the result of
hopelessness about other prospects in the society. And so one sees
high drug abuse, imprisonment, and so on.
And my own sense is that you need a bigger cultural change
than simply addressing the problems of women in that setting in order
to undercut the grounds for generating health inequalities.
DR. PELLEGRINO: Dr. Kass?
DR. KASS: Thank you.
Well, I am going to spoil the good cheer.
DR. DANIELS: I was waiting for that.
DR. KASS: And I don't want to do it sort of
contentiously because I want to say at the outset that I do care a lot
about the health needs of those people whose health needs are not being
And I would prefer, in fact, the formulation. I'm
trying to put it as neutrally as possible, leaving out all the fancy
What should our society do to meet the needs of the people
whose needs are not being met? I'm trying to do it without the
language of justice or without the language of obligation or without
even the language of good. That seems to me as to open the discussion
without necessarily buying into a particular theoretical framework. So
that would be a place where I would hope that there would be a common
And you sort of tossed off at the beginning you didn't
know what a good society was, but, among other things, it would have to
And then there is a particular understanding of justice in
terms of equality where I don't follow you. In other words,
I'm interested in justice, but the Rawlsian and corrective
understandings of justice don't strike me as sound or correct.
So one question I would have for you — and this is a
question, as opposed to a comment — by the way, this goes to
Rebecca's comment, too. It may very well be that the reason that
some of these arguments of 25 years ago haven't been successful is
that they are not philosophically, never mind politically,
philosophically framed in the way that could, in fact, attract
So a question would be why is health care that kind of
public good that comes under the heading of distributive justice in the
first place? I mean, before you move it into the justice category, I
need to be shown that this is the kind of thing that's rightly
taken up under the heading of justice.
And, therefore, I'm led to be upset by inequality in
health care; whereas, one could be interested not so much in the
inequality of health care but in the failure of needs to be met.
So, in fact, I really wonder sometimes listening to you
whether the real interest isn't somehow in fundamental social
equality. And health is a good stick with which to beat for that
cause, rather than our interest being sort of improving the health of
people, whether there are inequalities or not. So that would be one
Let me leave it at this, the second question. You say
toward the end that there has been a retreat from the principles to
concern with fair procedures. And sometimes it seemed that the fair
procedures were set to be a supplement to the principles. And
sometimes they were set to be by concession to necessity a replacement
for those principles.
But then it turns out that there are abstract principles here,
too for what are fair procedures. It sounds like we're talking
about — we will set by experts for how certain kinds of bodies,
often elite, are in a way going to sit and think this through.
I guess my sense is we have something called fair procedure for
worrying about these questions. It's called politics. And
where arguments are made — and this is not to say that the
people are simply wise. But it may very well be that the people
are wiser than councils of bioethics — staffed this way or
staffed by a different administration.
So I guess I wonder, what kind of political model do you
have when you're talking about the institution of these fair
procedures that's other than the politic that we have but, more
importantly, why do I have to go down the road of justice in the way in
which you have taken me in order to accomplish the result for better
health for the American people whose health is being under-served. I
think I can do that without raising the question of equality at all.
DR. DANIELS: Okay. Well, first of all, the account I give
is a needs-based account. I am focused on a lot of discussions give
and a lot of my writings on departures from normal functioning is an
attempt to draw a clear line around the kind of needs that we are
focused on in this case.
It is not simply a concern about equality but, rather, a
combined concern about levels of population health that is fairly
distributed, which might allow for some inequalities. But it is
focused on trying to move as many people towards normal functioning as
one can. So that's the overall goal of the picture.
And, indeed, one could look at this as it's one of the few
cases, unlike, say, income over wealth, where you might say that
maximizers and egalitarians come together. The ultimate goal of
a health maximizer is to produce a population in which everybody
is fully healthy.
The ultimate goal of an egalitarian would be to produce a
population in which everybody is fully healthy because that would be
the best outcome from an egalitarian perspective. There are no
inequalities in health. Everybody is healthy.
Short of that ultimate goal, there are going to be
disagreements between maximizers of population health and those
concerned about the equity and the distribution of the health and which
particular policies you follow to move us towards that goal.
So I guess what I would say is a lot of what I was trying
to do was to show why meeting certain needs is a concern of justice.
And in this case, it was particularly the kinds of needs that are being
met are ones that have a bearing on the distribution of a fundamental
good from the perspective of justice, opportunity.
So the overall structure of the theory was intended to
answer exactly the question which you're saying I wasn't
answering, but that was what motivated it. Do you want to go back?
DR. PELLEGRINO: Professor Kass?
PROF. KASS: Well, could you then say —
I mean, the fair quality of opportunity, at least it's not the
only thing you're talking about. But it's one of the central
I'm not sure that that is — how would you argue in
terms of the American quality and the American principles, that that is
a public good that then needs to be distributed equally. I mean,in the
Preamble to the Constitution, they talk about establishing justice. I
don't think they have that in mind.
DR. DANIELS: We do have the Fourteenth Amendment.
PROF. KASS: Yes, we have a Fourteenth Amendment,
but it has both to do with the absence of discrimination. And that
is certainly its context. This will be a long discussion, I grant,
but — well —
DR. DANIELS: Can I go on to your other question?
DR. DANIELS: Your other question was, isn't
politics at the core of all of this. And what do we need fair procedures
for? I went very carefully through the discussion of fair process,
but one actually looked at the book, which it's developed or
the Office of Public Affairs article, where the core ideas were
first laid out.
I think of this fair deliberative process is an attempt to
put into a range of institutional contexts. Something that I think has
democratic deliberation, as best one can it in those institutional
settings with strong publicity conditions that feed out into the
broader political arena, in which democracy definitely plays a role.
Though I'm not imagining this as an alterative to
politics, I am imagining that this is a way of enhancing our political
culture by making more people aware of the kinds of reasoning that goes
on in resource allocation decisions.
And by holding the people making those decision more accountable to
being able to defend and explain their reasoning around them. Two
are broad public, which may or may not be able to intervene directly
in those institutions. For example, if you have a private, for-profit
management care, you're not going to be able to involve and
require them to bring in stakeholders from among all the consumers.
But what you might do is compel them to be transparent about resource
allocation decisions, the reasoning behind them, so that the public
could operate through broader political mechanisms to impose regulations
or restrictions or something else on the institutions that are making
And meanwhile a clear, concrete record would accumulate
over time of those institutions were thinking about questions. And I
think of that as a kind of case law that emerges over a period of time
and is a good way to hold the people who are politically responsible
for regulating and appoint in public agencies the people who make these
decisions. It's a good way to hold them accountable for what those
decisions really do.
I was never thinking of this as an alternative, elite alternative,
to democratic process but, rather, as a way of enhancing democratic
process and bringing back into the political arena a clear reason
about the kinds of trade-offs that are often hidden behind budget
decisions that nobody knows about. We only see their consequences.
DR. PELLEGRINO: Dr. George?
PROF.GEORGE: My impression, Dr. Daniels, is that for
Rawlsians or other egalitarians, when they encounter a situation of
social inequality or inequality with respect to something that a
Rawlsian might consider to be a primary good, like opportunity or
wealth, what strikes them as the right question to ask is, how is that
And then there are various theoretical proposals and
standards, like the maximin standard for determining whether a
particular inequality is justified. But for non. egalitarians,
including those who do agree, as Dr. Kass said he did, with the idea
that meeting needs is a concern of justice, they don't see the
The question "How is that inequality justified?"
is not the first thing that jumps to mind. If the inequality raises a
question at all, it raises a question along the lines I think of
something like, well, there is an inequality with respect to an
outcome. What harm is that inequality doing or is there something here
to worry about, not so much in terms of the inequality itself. Is
there something to worry about because people are suffering, people are
being harmed, there is some damage to the interests of people whose
interests count in the relevant deliberation?
Now, if I am right about that — and perhaps I am not — if
I'm right about those two perspectives, how would you propose to
adjudicate between them? What would be the considerations that would
lead one to adopt an egalitarian point of view and, therefore, to look
at the question of inequality in a certain way or to adopt the
non-egalitarian point of view?
DR. DANIELS: Well, I just want to say that within the
philosophical orthodoxy, I don't count myself as a strict
PROF.GEORGE: I realize you're not a strict one, and I
know what a strict one would be. And there are very few strict ones as
far as I can tell. But there are also —
DR. DANIELS: My friend Larry Tempton is.
PROF.GEORGE: Okay. There are also very few strict
libertarians, but there are still people who definitely fall into the
libertarian, as opposed to the egalitarian camp.
DR. DANIELS: Well, I suppose one way I would start to
discuss this issue is to point to some of the context in which
you're not troubled by inequality, but there are some — and you
are willing to ask what harms are emerging or what needs are not being
met or some other questions like that.
And I would try to bring the disputants together around a
better awareness of the degree to which some of the concerns that look
like egalitarian concerns are really concerns about reducing certain
kinds of harms. And there may well be some kinds of recognitional
issues that tend to be ignored from within the anti-egalitarian
So if one goes to Marmot's work, supposedly we actually find
mechanisms. I'm not saying that I fully believe everything
he's saying. Okay? But suppose we find mechanisms in which
people's perceptions of their status tends to create the conditions
under which they're caused to be less healthy than other people.
Would we start to worry about those social conditions? And
we might ask questions like, well, what would it cost to remove them?
Is this the problem of those individuals? They're resentful and
envious and we ought to try to get them out?
But if it turns out that as most people respond that way to
those conditions, then we may be dealing with a very basic mechanism of
And then the question is whether things that looked
otherwise to be a reasonable distribution of goods turn out to be
harmful in ways that haven't been acknowledged, whether that would
break down the disagreement.
And it could be that some of those are connected to kinds
of inequalities that people perceive. Even the egalitarians were not
arguing for them initially on the grounds of the harms that they were
So, I mean, then you ask me how would I try to break down a
disagreement. That's the answer to that. I don't know how far
I could go with that answer.
PROF.GEORGE: Well, it's an interesting answer
because, as I understand the answer, it's a way of clarifying the
dispute between the disputants —
DR. DANIELS: Yes.
PROF.GEORGE: — and seeing where the common ground is and
perhaps where there isn't any.
DR. DANIELS: That's how I like to —
PROF.GEORGE: But I guess what I was really inviting you
to do was to tell me what the criteria are by which I should decide for
the general egalitarian view of things over the alternative.
Maybe if I put it a different way, it will be an easier
question to answer more directly. Do you think that inequality of
outcome with respect to the kinds of goods we're talking about in
this discussion is something prima facie bad in itself?
DR. DANIELS: No.
PROF.GEORGE: Okay. Then if that's the case, I think
DR. DANIELS: So in other —
PROF.GEORGE: — brings us back to Dr. Kass'
question. In your analysis, what if you just dropped out the
references to inequality altogether? Would the thing go through just
the way it is?
DR. DANIELS: No.
PROF.GEORGE: I mean, is Leon's suggestion about
"Look, the equality is not doing any work in this argument at
DR. DANIELS: That's not true that it's not doing
any work at all. It's doing a lot of work. The mere fact,
let's go back to the example that someone mentioned and I alluded
Suppose you had a subculture or a religious group that
engaged in a range of practices. They didn't smoke. They
didn't drink. They had purely safe sex and so on. And, lo and
behold, their aggregate health outcomes were better than those of the
rest of us sinners from their perceptive. Okay? So we have a health
inequality that exists.
And suppose we had done everything we could to educate the
public about smoking and drinking and all the rest of that but we want
to leave room for people to pursue their trade.offs in life as best
they can. And so now we have a health inequality that emerges from
Do I think it's unjust? No.
DR. KASS: Just a tiny follow-up. You do, however, think
it's unjust not to tend to the newly acquired health needs of the
people whose lifestyle is absolutely opposite of those and who are
unequally sick as a result. Why?
DR. DANIELS: Yes. Well, here it's an issue of causal
attribution that is partly, partly, underlying my concerns. When I
gave the idea of the people enmeshed in a religious culture, notice
part of what happens there is that in many ways, their children benefit
from the authority relationships that exist within that culture and so
If we look at other contexts in which we see significant
differences in lifestyle behaviors, although they don't explain the
socioeconomic gradient I was referring to before, maybe a third of it
but not all of it, one does see important correlations between
socioeconomic status, smoking rates, things like that, which flipped
early in the last century. It used to be smoking was a disease of the
rich or cause of disease of the rich. It became a cause of disease of
the poor for various reasons.
But if one looks at then the mechanisms, lots of peer
pressure among children, lots of other cultural factors, — you could
think of not just smoking but diet. I mean, people grow up in
different ethnic communities with very different lifestyles and cooking
So my mother's cooking is partly responsible for my
current battles with my weight and so on. So I wasn't just trying
to blame my mother. On the other hand, disentangling ascription of
responsibility is very difficult. We have some literature that shows
that working class people actually try to stop smoking at the same rate
that others do, but they fail to succeed as well as others for various
reasons, Barbeau's and Krieger's study and so on.
So these are very complicated stories, about which we do
not really understand all of the mechanisms. If we then want to say
we're ascribing responsibility to people for their bad health
outcomes and, therefore, we don't have a social responsibility to
address the unmet health needs or the increased health needs they have,
I think we are hiding behind and unexamined notion of responsibility.
DR. PELLEGRINO: Dr. McHugh? This is the last question.
DR. McHUGH: Well, I, too, thank you for your presentation,
but I have to tell you that I am made very uneasy by it because of the
shift that occurs within it in relationship to what seems like
epidemiological research and then into a domain that very much smacks
of political opinion and political pressure.
But I am lost in that. The philosophical background to that are outside
of my experience. And I depend upon the Council and other people
within it to tell me whether this unease that I feel here is unreasonable
and that I should put it aside.
But that is not the direction my question wants to go in. You
begin with the descriptive epidemiology playing out, socioeconomic
status, and its relationship to mortality and morbidity. You then
went to analytical epidemiology and described the fact that the
variation in wealth is not the complete explanation or can't
be the complete explanation, nor is the variation amongst countries
in their Gross National Product sufficiently explanatory of these
But then you step from there, rather than into experimental
epidemiology, which one would expect, and discussed how various
controlled studies might show us a particular direction to go, you then
stepped off into this philosophical arena.
I suppose I am calling for a continuation in the direction
that you went, that you started in, and ask you for your consideration
of studies that have a more experimental basis.
For example, the HeadStart study is a study that I have
been very interested in and was greatly committed to. And you say that
it is a success. In point of fact, I believe that it has turned out
not to be a success in the long — it certainly hasn't met its
promises that I had hoped for.
I don't know why we aren't asking you and people,
others of your persuasion that bring in issues of tax policies,
abortion, safe sex, and the like, all of which are dubious, to talk
more in the science area and stick to it.
DR. DANIELS: Was that a question?
DR. McHUGH: Yes. I want to know what science you're
going to turn to to get into the experimental area where controls and
real data will emerge.
DR. DANIELS: Well, I'm all in favor of real social
science and social epidemiology that would look at these things. We
don't have good controlled experiments on many of these questions.
And I would be all in favor of more support for them where we could
find them. So as far as —
DR. McHUGH: Maybe you should just suggest them.
DR. DANIELS: Well, I think there are further ways to
pursue the implications of what we do know than simply saying that
we're just short of the science on this. I think we're short
on the science that would tell us exactly what policy levers to pull.
And I would like to see much more of that developed.
And one of the areas of work I have done myself over the
last eight years has been to try to develop tools for monitoring and
evaluation of health sector reforms in developing countries to try to
look at how to make what I view as social experiments without any
monitoring/evaluation into evidence-based policy matters.
So I have done a lot of that. I didn't think
that's what you were focused on in this meeting. And that's
really not what I was asked to do for the presentation. But I'm
happy to give you citations to a couple of articles that begin that
sort of work.
If you look in the American Journal of Public Health, I
don't know if it's January 2006 or late 2005. There's an
article in a special issue which had a lot of articles on transforming
health systems. It was an article by me on social experimentation and
ethical and scientific evaluation of those kinds of experiments.
So I am not in disagreement with you about the need for
good social science. I am not a social scientist, however, by
training. So this is dappling.
DR. PELLEGRINO: Thank you very much, Dr. Daniels. Thank
DR. DANIELS: Thank you.
SESSION 7: PUBLIC COMMENTS
DR. PELLEGRINO: There are no comments.
(Whereupon, the foregoing matter was concluded at 12:12