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Friday, January 16, 2004

Session 6: Discussion of the Council's Future Work

Staff Working Paper, "The Council's Second Term: Agenda Options "

CHAIRMAN KASS:  Could we reconvene for what I think is going to be a very interesting and important discussion concerning the Council's future?

You have a staff- prepared working paper called "The Council's Second Term:  Agenda Options," which reviews the points of departure, reviews our major projects, offers a few generalizations about what we have done, and then sets forth some preliminary questions about what we might do next, and also then lists a series of possible topics.

These possible topics have been suggested by one or another, sometimes more than one Council member or it has come up in previous discussion.  Rather than my simply rehearsing them, you have them.  You have looked at them.  There are ten possible topics described in varying degrees of detail.

I would say two things.  We are not going to decide the question of the future agenda in a conversation of an hour and a half.  In fact, there are a couple of people who have planes to catch and may not make the full time.  So we will regard this as a preliminary round.  And what will follow this is the staff and I digesting this conversation.  We will supply additional materials for your reflection and response.

We have been slavishly productive for the first term.  When the next report comes out, God willing, in April, that will be five books in a little over two years.  No one has asked us now to do anything else.  We are somewhat in the clear.  We've got a slightly easier meeting schedule.

I think we should be free to think not only about topics but also about different forms of product.  It's not clear that everything that we do has to be the report written by members, by the Council.  We could put together collections of essays and papers.

And in the first instance, I think we should try to educate ourselves about what some of these issues are so that, even if it takes us a couple of meetings to work out the full agenda, we do it as we have done before:  invite some people in, have some discussions amongst ourselves, land on a topic that is appropriate.

So while the stakes are in a way high, I don't feel the sense of urgency.  And I think we should have a wide- ranging and exploratory conversation.

I have my own slight leanings one way or the other, but they're not strong enough even to voice them in the conversation at this point.  So I am really mostly interested to see where people are in their own thinking and whether there is anything here in the document that strikes any of you as something that might be worthwhile our exploring.

We could also invite some postmortem on the toe in the water we got yesterday in neuroscience and neuropsychiatry because it is one of the areas of interest and an area in which we have also some special competence on the Council.

Any place you would like to go is fine with me.  Paul McHugh.

DR. McHUGH:  Yes.  Leon, I would like to pick up on what you said in your last remarks and say that yesterday's meeting with the neuropsychologists and neuroscientists was very interesting and raised for all of us the place of neuroscience in relationship to our understanding of humankind.

As you heard from my slightly intemperate remarks yesterday, I, of course, believe that the issues here to be discussed ultimately relate to the issue of consciousness itself.  Consciousness, which brings freedom to nature, is a product of the body but is also something interactive with the body and a matter of phenotype that has had its role presumably in natural selection and evolution.

The issues that came up yesterday as to the predictability from the brain ultimately depend upon our understanding about consciousness itself.  So I would like to suggest that we think in terms of some devotion of some of our time to consciousness:  Its bi-directional linkages with the body.  And its evolution through natural selection and, thus, the implications of human consciousness today.

We have, of course, on our board, as you said, perhaps our country's most distinguished student of consciousness and it's bi-directional linkages with the brain in Mike Gazzaniga.  Mike has not only done the most interesting basic work of how consciousness and the brain interrelate but has done this both for the scientific community and also for the public at large.  There are other people who could speak in terms of the issue of consciousness, people like John Searle and in evolutionary terms Daniel Dennett.  Then a person whom I think also speaks coherently about the Darwinian issues in relationship to consciousness and its problems is Stephen Rose.

At any rate, the issue that we have to understand as a Council and make clear to the American public is that evolution does work on phenotype.  It doesn't work on genotype.

And clearly since Jan Smuts, we have talked in holistic terms about how the organism interacts in evolutionary terms and consciousness.  Particularly its ultimate evolution in human consciousness is an example of the power of this process and has tremendous meaning for our understanding of not only what is man but who am I and that sort.

So I would recommend that we should follow up our discussions here yesterday about what may well be the overvalued concepts on certain kinds of brain imaging to see the place of consciousness, which we cannot explain from the brain yet, as I said yesterday, and, yet, has a crucial place in our understanding of ourselves and of nature.

CHAIRMAN KASS:  Rather than simply go on a laundry list of different items, maybe I should invite people to respond to Paul's suggestion or things in the related area.  And then we will move on.

Does someone want to join?  I see Frank nodding his head, and I think Bill and Gil would want in on this, too.  Please, Frank.

PROF. FUKUYAMA:  I would just second that.  I mean, I think that the consciousness is not just an inherently interesting issue.  It is very much related to what it means to be a human being because human consciousness is really different.  It is the one thing you point to as being a kind of unique human characteristic.

So I would just say that it is very important, connected to the larger issues that we have been dealing with in this Council right from the beginning.

Also, I think it is an area where the science has so many holes in it at the moment that it is important to bring out some of where the frontier is but also what some of the limitations in the current understanding of the phenomenon are.


DR. HURLBUT:  Just to take your comment to its practical meaning, the concept of consciousness and its relationship to freedom takes us into what I think is an extremely important emerging territory of ethics, perhaps the most difficult ethical question of all.  And that is the question of freedom, personal responsibility as they relate to criminal behavior.

I think anybody in science and medicine recognizes that the traditional concepts that have guided our adjudications and penalties and so forth, that these are going to be challenged by emerging science.  Although that will be a long conversation of many decades, it would be good for us to start that conversation here as a Council.


PROF. MEILAENDER:  I'd express a reservation, not stronger than that but a reservation, about the topic.  I would be happy to have us pursue it.  There are interesting and important questions to raise.

I think the best topics, though, are topics that engage us at a theoretical level but that we can also see ways in which actual ethical questions and decisions emerge from them, so questions that sort of engage us at several different levels.

I am not at the moment persuaded that this topic will really do that.  I think it does raise some very difficult and interesting questions.  As far as I can tell at the moment, they're new versions of questions that are actually very old and have arisen in other ways.

So it would be interesting to pursue.  I'm sure it would be useful to pursue.  It would I predict result in something rather more like our "Beyond Therapy" document than like some of the other things.  I would, other things being equal, prefer to see us move in a direction that crossed, sort of held together those larger theoretical interests with something that had some sort of policy, more immediate policy, implications.

CHAIRMAN KASS:  Mike Gazzaniga, do you have something you want to say on this topic?

DR. GAZZANIGA:  Gee, Paul, you know, when you make such generous remarks like that, I think one is being set up so that after you give your talk, we say, "See how little we know."

As one who does lecture in and think, study this thing, I know how little we know, but I think there is plenty there for everybody to get their head around and to think about its implications for the sort of issues that Bill just raised, the utility of it being in terms of current concepts of personal responsibility and the notion of free will.  So I think there is a lot there, but I am a self- interested party in this.  So you should decide.

CHAIRMAN KASS:  But you are not waving this off.

Still on the same topic, Robby?

PROF. GEORGE:  Yes.  Thanks, Leon.

You know, I understand Gil's reservation, and I share Gil's view that the best topics for us are topics that engage us theoretically, engage our interests theoretically, but also have public policy value.

It raises for me a general question when I think about the exploration of consciousness and mind and freedom.  Very often I have noticed in our discussions, often our discussions with guests who come to speak to us, that a topic or the policy implications of a topic will be waved off because while the day may come when this or that problem presents itself by virtue of an emerging technology or an increase in scientific understanding.  That day is very, very, very far off.

Then other times, of course, we deal with problems that are right on top of us and the science or the technology seems to be moving more quickly than we can assimilate our own thinking to it.

So in trying to get a grip, having in mind Gil's concern here on whether I think this is a good thing to do, I would like to know perhaps from Mike Gazzaniga or I probably should have raised this question with our guests yesterday.  I would like to know how far we are from having to face real public policy ethical choices about the use of imaging techniques in the context of, let's say, criminal investigations or, well, in some of the concrete areas that were raised yesterday about prediction of behavior. Mike, I'll put it to you.

Are we 100 years off from that, in which case perhaps if you share Gil's and my view about the best projects for us, maybe we would lay this aside, or are we 20 years off?  If we're 20 years off, then perhaps somebody ought to be thinking about this now, the ethical dimensions of this now.  And there is no other somebody around with the kind of governmental license to do this.  We're it.  Maybe that's not a bad idea.

So can you say anything that would be helpful on that?

DR. GAZZANIGA:  There are concurrently running conferences that are addressing the impact of neuroscience on legal questions; to take an example of the concept of culpability, personal responsibility and what brain imaging might or might not say about what, what neurochemical studies might or might not say about that, what lesion studies might or might not say about that.  These are ongoing now.  I sent Leon a paper that I wrote on this topic.

In many ways, I am inclined to the position that in a lot of these issues, neuroscience should butt out, that they don't have anything to say about it.

So, on the one hand, the data is building that this information will be used in various courts of law.  But I actually caution against using the courts of law for a long argument that I won't get into here.

So it's on the table.  It's in the system.  The lawyers are interested.  The judges are interested.  The judges hold national meetings looking at this neuroscience data.  There is one going on at Dartmouth this summer where all the U.S. court judges come and listen to the case of neuroscience.  The neurogenetic implications, it's all out there.

The question that both you and Gil raise or your reservations are well- taken, but I think all that means is you should got into it with caution and listen to what is being said.

The basic notion that the defense lawyers and many legal scholars want to use is they want to explain away why Harry killed Bob, because of the pixel in their brain.  That's the question.  They want to remove responsibility from Harry.  Can we say that?  Is that a viable idea?  That issue is a very complex issue at both the neuroscience level, at the legal level.

So they're fascinating topics.  I think that you would enjoy them.  I don't know what we would do about them, but you would all feel enlightened by the debates.

CHAIRMAN KASS:  Charles, to the same subject?



DR. KRAUTHAMMER:  But that eminence would make it a compelling subject for us.  Clearly we're not sure when the science will mature enough to justify these actions, but you're telling us that these actions are happening right now.

I think we could have a lot to contribute precisely for that reason.  We could study the science that people bring to us, make that public, and then draw our own conclusions.  Especially if this is just getting off the ground, I think it would be, as public policy, a terrific public service if we did this since obviously nobody else would do it the way that we would.

CHAIRMAN KASS:  Robby, still on the same?

PROF. GEORGE:  Yes, just to follow up with Michael, which that was very helpful, Michael, to know.  Could I ask you further, in addition to the defense lawyers wanting to explain that Harry performed this horrific act because of something beyond his control, how close are we to this scenario depicted for us yesterday of predicting that Harry will do it or is much more likely than the rest of us to do it and doing something about it?

I can imagine that different people would propose a range of things, some of which would strike most of us as unethical to do.  If that's close, that strengthens the case further I think for doing something.

DR. GAZZANIGA:  Well, we are getting into it now.  That is the core question.  There are people that would make a strong claim that because so and so had a lesion in the orbitofrontal cortex, this would explain why they have this violent act occur and, therefore, they're exculpable because of the lesion.

That claim is out there now.  And there are qualified physicians and neuroscientists who would argue this, the claim that that is not an okay way of thinking about it from the same group of qualified people.

So the debate is on.  I don't want to get into it here because it should be brought out in an orderly way.  You should feel confident that those issues are hotly debated and there are two sides of the question as we speak.

DR. McHUGH:  And could I just add to that?  I didn't talk with him before, before we came in this morning, but I believe that what Mike is saying is exactly what I think is the important things to be done here and that yesterday it was not only the material that was being presented but the stance that was being presented towards the issue of brain and brain predictability about things which ultimately are going to play themselves out in consciousness itself.

And until we as an ethics council really understand the limits that the brain work can do for us and the place of consciousness in its bidirectionality to the brain, I think we will miss an opportunity to engage the public in a more coherent view of where neuroscience is today.

CHAIRMAN KASS:  Bill May, Michael.  Charles, is your light on?

DR. MAY:  It seems to me that the level of payoff, an application, not simply the forensic issues but also medical issues of care, of Alzheimer's patients and arterial sclerotic conditions, where you face personality changes and so forth.  And that relates to the perceptions and consciousness of the world.  So it's not simply forensic issues but also issues in health care that would surface here at a practical level.


PROF. SANDEL:  I want to just add my voice to what seems a strong sentiment around the table.  Recall that the sessions that we had with Pinker and with Cohen were among two of the most engaging and lively and interesting sessions we have had.  Then with practical implications that have just been even hinted at here, I think this would be a terrific topic for us.


DR. KRAUTHAMMER:  I would just add that I found the most compelling part of the presentation yesterday was that clip from CNN Headline News.  You can see how imaging is so translatable to popular culture that I think it will soon be used a lot to justify all kinds of crazy stuff.  And it seems to me that since that is just starting, we could really contribute something by bringing a bit of a reality principle and just putting out the facts.

For instance, I was interested to learn that there is a five- second delay between the lighting up, which I had never heard of before yesterday.  And I read this stuff reasonably carefully.

And I think we would have a lot to contribute in this area, I think it is a natural for us.

CHAIRMAN KASS:  It sounds like there is, if not unanimous support for this, very strong support.  Let me make a suggestion.  I don't say I have a reservation.  I have a concern about how to organize this and how to focus this so that we are not doing everything conceivable under this subject.

My suggestion is the way we should proceed is some staff work with the help of our experts on the Council.  This means not just experts on the technical side but the kinds of questions that we would like to have raised, forensic and other, and see if we can't use the next meeting or two to begin to bring in some additional people who could inform us on those subparts that we would like to learn about and, by collecting certain kinds of readings that we can discuss amongst ourselves, explore this further and try to define it in such a way that we know what we are doing and not simply, at the taxpayers' expense, enjoying ourselves in interesting speculations.

I would like this to be somehow a useful thing.  I can see lots of ways it could be.  But I think we have to work pretty hard in order to formulate it so that would have a pretty good chance of happening.

Is that agreeable as a strategy for going forward?  Mike, please.

DR. GAZZANIGA:  Well, I was going to offer another suggestion that would contrast with this, equally as interesting, I think, but I think fulfills for the people who have reservations' agenda.  That would be to have a full session on what modern science knows about the developing mind of the child, both from a neurobiological point of view and a neuropsychological point of view.

Yesterday we heard from Bob Michels all of the ideas of sorting kids by capacity and all of this sort of thinking.  In there is sort of an implied "genes-are-destiny" sort of pitch.  I don't think there is any modern neuroscientist who really thinks that.

So the thing that I think we should all educate ourselves on is what is known about the developing brain; what is known about the young child's mind; putting it crudely, what comes from the factory, what doesn't; what are the concepts that are built- in, which ones are learned; what is the extent that it is malleable and plastic, what is the extent that it isn't; are things like temperament more under genetic control than intellect?

All of this stuff is well worked on, well thought- out.  And it would set the context for so much of the discussion about possible implications for education or not education in a long list of the child.

CHAIRMAN KASS:  Right.  Suggestion.  It is sometimes much more economical for us to read than to simply bring some people in to listen to them make a presentation when the papers or an article or a short book is available.  We are simply going to ask you, Mike and others here, to produce a kind of bibliography.

This is a new terrain for probably most people here.  We can do some of our homework on this one between meetings by reading, especially if it doesn't come ten days before the meeting.

If you can get us some references of things to get us up to speed, that would be very helpful.  And we can use our invitations more selectively against an informed background.  This would be a very exciting thing to learn about.


DR. FOSTER:  But I really want to speak strongly to have live humans come in here to talk —

CHAIRMAN KASS:  Oh, of course.  Of course.

DR. FOSTER:  — because the most important things we learned were in questioning, not in what they said.  So I hope you're not arguing for simply a reading.

CHAIRMAN KASS:  No, no, no, but that if Mike says, "Look, there is this massive amount of stuff known about the developing mind of a child" and some of this we could get by reading and then get an expert in when we're suitably prepped, absolutely, Dan, I agree.

Can we move from the neuroscience?  Janet, please.

DR. ROWLEY:  You know, it does suggest itself that there could be an order since, to at least some of us, both topics have attractions, that if we followed Mike's suggestion first and got a little bit more understanding of the development of the brain and then went into the area of consciousness, that would seem a more logical order than the reverse.

CHAIRMAN KASS:  Bill, do you want to say something before we move on?

DR. HURLBUT:  Just to affirm what Mike says, these are very much related issues.  For example, the work of Antonio Demasio has shown that the development of certain empathic capacities relates to later antisocial behavior.  And it would also be a realm, development would be a realm, where interventions might be a very practical concern ultimately.

CHAIRMAN KASS:  All right.  Other topics?  Rebecca and then Mary Ann.

PROF. DRESSER:  I support the neuroethics investigation, but I think a nice counterpoint and something much more down to earth would be some version of number 3, the elderly biotechnology and bioethics, focusing on dementia and end of life, the overlap or separately.

Gil and I were talking.  I said, "I think this is an area that is pseudo settled in policy and ethics.  There was a lot of discussion 20 years ago, 15, 10."  It has died down.  Now with this Florida case, it has come back into public consciousness.

There has been a sense that, "Well, we just need to make a living will, an advanced directive, and everything will be settled."  That's not at all accurate in practice or in policy.

The last three high- profile cases have involved family disputes, patients who had severe brain injuries, some statements, former statements, about "This is how I would like to live" and so forth, but nothing specific.  There really is very little guidance on how to proceed in those cases.

I think we could make a big contribution and then at a higher level just a group like this talking about what does death with dignity really mean today for our country and different individuals, how should we think about it, how should clinicians think about it, how should people think about it for their family members and themselves.

I think it is an intrinsically interesting area.  And I also think it would be something to work on in parallel with this more speculative area that could make a contribution to the people who are paying our per diems and so forth.  I think it is very much needed at a practical level.

CHAIRMAN KASS:  Continuing on this topic, Charles.

DR. KRAUTHAMMER:  Yes.  I would like to strongly endorse that.  I do think this is an area that really needs or could use analysis.  The Schiavo case in Florida did bring it up again.

It seems to me that it is cyclical.  We get interested in this.  Every 10 or 15 years, there is a case.  Right now there is a kind of a lull.  We had the euthanasia debate in Oregon and, of course, Holland.  That is going to come back.

It is now quiescent.  We have got a war, and we have other things to worry about.  I think it is precisely because the debate is quiescent now that we could do some rather measured work on that.

I do think euthanasia, which is sort of one aspect of this and perhaps it is the extreme case, but the whole study of end of life, death with dignity needs a modern or a recent new look at.  I think we could do it.

So I would like to very strongly endorse that.  Some people will say it is another sign of the narcissism of the boomers, "Now that we're going to die, we want to study this," but I think it needs study.  And I can't think of a better group to do it.


DR. GÓMEZ-LOBO:  On the same line, I really think it would be important to study these topics of end of life.  Now, I find the question of the general care of the elderly very important, I mean, not just euthanasia but as our population is aging.  As families are smaller and smaller and people are put away in some nursing home, et cetera, I think there may be for us as a community some very important ethical issues.  How do we treat these people who have given us so much as grandparents, parents, et cetera?  And there may be, for instance, interesting findings with regard to that topic.

I admit that theoretically it is probably less interesting than any of the other topics than euthanasia, but I sense that there is a real question of justice involved in the care of the elderly.

CHAIRMAN KASS:  On this topic, Gil?

PROF. MEILAENDER:  This was the topic among the things that I was going to recommend before you all buried me under your support for the neuroethics proposal.  I actually still think it is the best.

It raises some very interesting theoretical questions, actually.  The questions about personal continuity that dementia raises are fascinating and every bit as complicated as any other.  But it also touches something that is about as fundamental to our humanity as it is possible to get.

So there is that sort of rich human dimension to it.  There are some complicated theoretical questions, and there are clear policy kinds of things.  It just seems to me to have all of the elements that a really good topic would have that we could do something that is intellectually interesting and also genuinely useful.  So I think it is a good topic.

DR. KRAUTHAMMER:  Could I add one point?  It is missing an element, embryos, which makes it extremely attractive for that reason alone.

PROF. MEILAENDER:  The demented person was once an embryo, Charles.

DR. KRAUTHAMMER: Well, it doesn't involve a decision about that.  And because of that, I think it will allow us to recapitulate a lot of our other debates, removing that element, one that is sort of in some ways beyond discussion and debate and compromise and will give us an arena to have our other discussion I think uncontaminated or have I given away our game here?

CHAIRMAN KASS:  No.  You have now changed the debate from the debate about the embryo to the debate about whether we should not debate about the embryo because Robby wants to say something.

PROF. GEORGE:  Well, this time I am the guy who will raise the reservation.

DR. KRAUTHAMMER:  Don't you dare.

PROF. GEORGE:  And it actually arises out of what —

CHAIRMAN KASS:  Oh, come on.

PROF. GEORGE:  No.  Honestly, it honestly does.

And here is the reservation.  The reservation is if we go to questions of euthanasia and physician- assisted suicide — now, there are other questions, like some of the ones that Bill and I think Alfonso have talked about, care of the elderly issues, on which I don't think we have this problem.  If we go to those very controversial issues, the Council will be divided in a very fundamental way, the way we were on embryos.  And, in fact, it's not —

CHAIRMAN KASS:  That's perfectly fine.

PROF. GEORGE:  It's not —

PROF. SANDEL:  How do you know it will be the same division, Robby?

PROF. GEORGE:  No.  I am not saying it will be the identical division.  I am saying in the same way, not that the same people will line up on the same sides, but it will be in the same way.  And it will be in a similar issue.  It is going to be the issue of personhood and whether there can be post- personal human life, just as we argue about whether there can be pre- personal or pre- conscious human life or post- conscious human life.

Argue with me.  Explain.

DR. KRAUTHAMMER:  I will argue with you because I think that you —

PROF. SANDEL:  You don't have to argue because, Robby, this is a reason for taking it up.  So you agree.

DR. KRAUTHAMMER:  Empirically if you look at our discussions earlier on, if you get past — I don't know — six months of gestation, I think all of us are unanimous here.  It's the early stuff that was uncrackable.  Certainly at the point of birth, that issue doesn't exist.

PROF. GEORGE:  Charles, look at the literature.

DR. KRAUTHAMMER:  May I?  I'm talking about our own history here.

CHAIRMAN KASS:  I think it would be premature, since you don't have your imaging of all of our brains, it would be premature to guess how the discussion in this matter is going to turn out.  Yes, there are life issues here, but there are life issues that don't depend upon whether you think the embryo belongs in the conversation about the life issues, the early embryo.  That would be one point.

Second, I was originally very skeptical about this.  In fact, in the original executive order listing all the topics that we might consider, end- of- life issues I think is the last one or something like that.  Actually, I probably have it in front of me, but it was tacked on there by someone in the White House who wanted to make sure that this was partly our agenda.

And I sort of winced because this is a tired subject.  People like Charles and myself and others who have written on this subject, assisted suicide and euthanasia, felt, "What else is there to say on this matter?"  But the more I have thought about it, the more I think there are good reasons for us to take it up.

The demographics alone means that this is going to be a question of increasing importance for the society. 

Second, I do think that there is a way in which this Council, given its predilections, does not simply treat ethical questions as merely technical questions, has a way of doing exactly what Rebecca has suggested, to lift up to view and show the limitations of what has been a kind of bureaucratic and technological, technical solution to these very complicated human questions.

Third, if you can take up the end- of- life decisions not just as end- of- life decisions but as part of a larger investigation of the questions about old age and some of their disturbing features and the human implications of those, we would put what is for many people the only question, mainly "When do you pull the plug?" into the larger, richer, and important medical and human context in which these decisions find themselves. I think we can do that.  I think we could show how to think about those questions in a larger context.

So I think we would have all of that richness about which Gil has spoken as well as an opportunity to do something useful, socially important.  And if we are divided on these matters, we will be able to present the best possible arguments on the various sides of these matters for the public discussion because if we're divided on things, people are divided.  I think that is perfectly all right.


PROF. GEORGE:  I think it is entirely possible that we could issue a report that would be very much along the lines of the human dignity and human cloning report, in which the Council recommended by a vote of 10 to 7 in this case a 4- year moratorium on physician- assisted suicide with the 10 breaking down into 7 to 3 within that camp as to why this is the case and the 7 breaking down to 4 to 3.

So I think there would be inevitably a fracturing here.  Now, that's fine if people think that that is a good way for the Council to proceed because we've got the best arguments out there and so forth.  And we're happy to do it again.  Then that's fine.  But if we're looking for a consensus approach to things or a consensus document, I don't think this will be it.

DR. KRAUTHAMMER:  I don't know why you assume it will be 10 to 7 or even split.

PROF. GEORGE:  I am not prejudging what the vote would be.


DR. KRAUTHAMMER:  I honestly don't know.

PROF. MEILAENDER:  I still think this is a good topic, and I would like to see us do it.  I do think Robby is right about the essential point.  I mean, you couldn't have read the bioethics literature for the last quarter century and not see that there are close connections between the way certain issues about personal identity get raised in the beginning- of- life and end- of- life questions.

So that will come up.  And we shouldn't take the subject up supposing that it won't do that.  It will do that.  That for me is not a reason not to take it up.  It's in some respects a reason to take it up.  I'm not a big devotee of consensus documents anyway.

So I think it is a good topic.  It's a rich topic.  But the notion that — we shouldn't deceive ourselves into supposing that what you decide about some of those end- of- life issues doesn't spin off in ways that have implications for what you might think about the beginning- of- life issues.

CHAIRMAN KASS:  Could I ask the medical people on this — I don't want to suggest that we start talking about things that have medical implications — whether this makes sense to the three of you?

DR. McHUGH:  I also have written on this subject.  I would welcome further discussion, but I agree absolutely with Robby that the responses are out there in relationship particularly to assisted suicide.

People seem unpersuaded by my prose, and they're not persuaded by your prose, which is even better than mine, that this Oregon exists out there in its world.  It would be useful to bring out, for example, in the Oregon experience that they promised that this was going to be an experiment and now won't let us look at the data.

I would love to have that out in the public arena that the Oregon group said that assisted suicide would be something we could do and learn from their experience as to whether it was a good thing or a bad thing and then when others of us came forward and say, "Okay.  Let us look at the data," then they would say, "No.  That's private."  I would be very happy to have that kind of information presented further to the American public so that they could hold the line.

I agree with Robby that —

CHAIRMAN KASS:  Both of you have chosen a way to narrow the question to assisted suicide and euthanasia; whereas, the staff has deliberately framed this question in a much larger context.  And Alfonso has spoken to that, Rebecca has spoken to that, Gil has spoken to that.

PROF. GEORGE:  Leon, I explicitly said that when it comes to those dimensions of the proposal, you wouldn't have this problem.  But the proposal does include these dimensions having to do with these very controversial and divisive issues as well.

I just worry about us running up against the situation where at the end of the day, we just say, "On these issues, we just have fundamental value differences, and we can't get past them.  We're at an impasse, and we just have to live with that" unless we think that getting the best arguments out on the competing sides is a real contribution, which you suggested and I don't doubt.

In that case, we will do it, but we should be prepared in advance, I think, not to at the end of the day, then, find ourselves trying to put together a consensus where one doesn't exist.  I think we need to in advance say we're prepared to do this other —

CHAIRMAN KASS:  In the executive order, it says that we are not to be driven by an overriding need to produce consensus.  We have taken it where we found it.  And where we don't have it, we do the President a service and the nation a service by making the best cases we can.  We may not have done it as well as we should, but I wouldn't be embarrassed by it and I hope no one here would be, really.

Dan, do you want to say something on this for the medical side?

DR. FOSTER:  No, I don't.  I think that there are many issues that have already been mentioned.  We mentioned care.  And I think that Rebecca is absolutely right.  In individual cases, even if you have got an advanced directive, — we go through this all the time — then families withdraw and argue about it.

I mean, the guidelines are all there.  There's not too much issue about meaningful life at that point.  But, as Charles said, you go through these cycles.  And you have to do it.  It's very complicated.

We are probably going to have to put into any discussion of the care of the elderly here the economic consequences, which are really huge, and to how are we going to care for these people.  I mean, even if you have somebody in a nursing home and so forth, the expenses are way above what ordinary people make right now anyway.  They just can't pay it.

So that may be one of the most important issues that comes up, a statement about the commitment of the nation to care for its elderly and helpless at that point.  I think that would be a very large part of it.

I also think that the issue of the suicide — we don't have time to talk about that now.  I mean, it will doubtless come up, but I would certainly hate to make that the major issue that was there.

I would be more inclined for the bioethics of the care if all of us, as we have heard multiple times, were once an embryo and all of us once upon a time will have been old and are going to die.  So I think that that is something that is very important: is the economic domains here.

CHAIRMAN KASS:  I would second that in its entirety.  Are we okay on this topic?  It looks like this is an area also worth developing to the next stage, trying to articulate the pieces of this better, find the people to come in, something on the economics of the health care of the elderly.  There are some people working on this.  They're befuddled.  We'll find out who they are and bring them in.

Other topics?  Mary Ann?

PROF. GLENDON:  This is really just another way of looking at the questions relating to the care of the elderly.  I think that's a great subject for us.  But I would be sad to see it separated from two of the other items that are listed here:  number 2, children; and number 9, the distribution of health resources.

One of the reasons I think that we would have a great contribution to make if we kept those three topics together is plain.  If you saw the front page article in The New York Times on January 8, it tells us more of what we already know.  Spending on health rose to a record level.  Health care spending accounts for nearly 15 percent of the nation's economy, and not only the largest share on record here but a larger share of the national resources than is spent by any other country.  Yet, we have this paradox that we know that we spend more on health care than any other country, but somehow there are great gaps in access to health care.

It seems to me with our emphasis in our reader and elsewhere on the relationships among generations, what it means to be human has something to do with our past and our future.  It seems to me that if we could keep these three topics together, we could help to overcome what I perceive as the dominant paradigm for discussing these issues today in our society, which is one of conflict between generations.

It seems to me you don't hear anybody saying that the elderly have a stake in the future and that all of us have a stake in how we treat those who came before us and gave us what we have.  So I like all the topics that have been proposed so far, but I would like to see a comprehensive approach to the elder care one.

CHAIRMAN KASS:  Any further comments in response to Mary Ann, who has given us two additions?  Michael?

PROF. SANDEL:  Mary Ann has been a tireless advocate of the ideas of the priorities in health care spending, both domestically and also internationally.  The footnote mentioned the point that was contained in the "Beyond Therapy" about the spending on baldness remedies versus malaria.

I think every time Mary Ann has brought that up, I've said I endorse it.  I realize it is not the most popular topic for many people here and maybe feeling that this Council isn't well- suited to take it up, but I think I agree with the point Mary Ann has made on a number of occasions, that if we look at the impact and the significance of the questions in a very practical way that we're dealing with, this would certainly rank among them.


DR. MAY:  Behind the issue lies the question of the status of health care as good.  Is it an optional commodity?  And, therefore, the problem of access is not an acute problem.  But if you think of it as really a fundamental good, then access to that good becomes very important to sustaining a community.  And specifically, as you have suggested, the relationship of the generations to one another.

And the other issue is not simply the question of access but the comprehensiveness of this system, the degree to which it is not simply lopsidedly directed to acute care but to other forms of service that touch on the question of not simply death with dignity but aging with dignity, not that we can guarantee dignity and age by an adequate comprehensive range of services.  "Everyday" is a word that is used here.  But we can offer assistance in sustaining a life with dignity in the middle of aging.

I guess my question about that topic is whether this particular group is equipped to approach these issues.  It would require if you're dealing with the systemic issues, you have to think through.  Economists and others would need to be brought to the table to address these issues.

As a group around this table, well, oftentimes we have tried to compensate for our deficiencies here by bringing in guests, but there would be an awful lot of homework to be done on this issue if it became central to the focus of this Council.


DR. McHUGH:  I would like to support Mary Ann's suggestion very much because I think this interface, these interactions of these three themes are terribly important and carry with them a little bit of what she was saying that I want to underline, namely the development of our attitudes towards our responsibilities towards others, that there are often hidden agendas that are proposed for us, sometimes economic agendas, other kinds of agendas related to pain, and may, in fact, corrupt our attitudes if we don't put them out and show them in relationship to other values that we are committed to.  So I would very much support what Mary Ann is saying.

DR. FOSTER:  The only issue that is worrisome would be if we are studying all of life, it may be so big that you couldn't possibly do it in the two years that you've got.  So I am more inclined to focus on, to me, the more acute problem of the geriatric age group.  If we had time to add the children and economics, we are not going to solve that.  The Institute of Medicine has just had a new report out on health care and so forth.  But we could at least say that these are things, not solutions to it, but these have to be addressed.

So I would rather do some smaller thing well than to try to cover everything in a sort of superficial manner.  It is not to say that it is not critically important.  And they are all related, but I do worry about that.


PROF. FUKUYAMA:  I guess I still don't understand what this topic is.  Maybe Mary Ann could just explain a little bit more what you propose because if it is the resource allocation issue, then it does seem to be the broader national health policy debate, which is just such an unbelievable complex morass that I kind of agree with Bill that it is hard to see how we could get into that usefully.  Maybe you had something more focused in mind.

PROF. GLENDON:  I am not sure that I can outline an agenda for the group, but I think the precise area that we ought to focus on is the way in which this problem is currently articulated as one of conflict between the generations for scarce resources, rather than exploring the possibilities of, for example, as some European countries do, encouraging and helping with family home care, rather than policies that, whether inadvertently or not, push people into institutional care; the whole question of care- giving, who provides it and how we value it in a society.  Take a look at why health care at the end of the life is so expensive and what that means.  I think right now all you can say is there is a problem with thinking about this area of elder care separately from other areas because it fuels the conflict model.

CHAIRMAN KASS:  Anything further on this?  Anyone want to say anything more on the children side of this?  We have talked more about the medical resources question.  Janet, please.

DR. ROWLEY:  I was just going to make the comment that to the extent that we discuss what is known about the developing human brain and both the pattern in which it develops and how we as a society could foster the full development of those potentials in all children, we then could be focusing on an extraordinarily important component of what children really need, both educationally and in terms of home nurturing and health, so that some of those topics could be brought up.

CHAIRMAN KASS:  That is very nice.  Again, I don't think we can do everything and hope to do anything well.  We have to make some choices, but we can I think put our toe in the water on a number of things and see where it goes.

I do think that I would second Mary Ann's suggestion that one doesn't want to contribute to the conception of a society that is advanced by the AARP, in which by the time you are age 50, you declare a war upon everybody who is younger and simply look out for yourself.

Yes, we have obligations.  I never joined.  It offended me.  Yes, we have to look out.  And we have obligations to our elderly population and the duties of care rooted in obligation and love and justice, but in many ways, the state of our children is perhaps even worse, arguably.

To have started in, we got a little entrance into this in what we looked at with psychopharmacology and children.  We concentrated more on the beyond therapy uses, but one should be I think even more impressed with the need for therapy on the part of a growing number of children.

It was reported to us I think, as this was shared here, that among the entering class at one of the elite universities this fall, 20 percent of the entering class was on or had been on antidepressants.  That's not just better diagnosis, I'm fairly confident.

It seems to me that if we could lift up not just the technical questions of childhood but maybe beginning in the way Janet suggests with the development studies and call attention to the questions of bioethics in children generally, even if we do it on a well- focused topic, I think that would be great.  Plus, that's, once again, not to reduce these questions to their most narrow and technical formulation.  We have the capacity and the desire and I think the experience to do something like that.

I know a couple of people have to leave about 11:30.  If they want to put their oar in for one of the other topics before they have to go, I give them the mike.  Michael?  Dan?  Anything you would like to take up, Mike?

DR. GAZZANIGA:  It touches on all of these things.  I don't know if it requires a separate category or not, but I am intrigued with the problem of the overselling of medicine in our culture.  I think that is what is bankrupting everything.

It is a very complex problem.  People have tried to address it, but the vested interest in sustaining boutique medicine, serious medicine gets so intertwined that you can't separate out the good from the bad.

Epidemiological studies are carried out which show that a certain procedure shouldn't be undertaken.  And, yet, it continues.  It costs billions of dollars every year.

To have a very thoughtful effort of healthy economists coming in, of physicians who have insight into this, who have thought about it, I can't help but believe would be highly educational.

Everybody just assumes that every new little trick in medicine isn't right.  With that comes this bankrupting influence.  It is ruining institutions of higher education.  We can't afford these bills.  No one can.  Everybody has got the same problem.  And they solve it by just cutting things off wholesale and not really analyzing the underlying problem.

So I don't know if there is a place for national conversation on the overselling of medicine, but I think it is something that ought to be considered by somebody.

CHAIRMAN KASS:  Thank you.  We had talked, you and I, Mike, and we had Dr. Fisher come down and talk to the staff.  It may fit, really, with the resource question.  And it might fit also with our earlier concerns about medicalization as fueled conceptually as well as economically and sociologically.  Maybe we should get Dr. Fisher to come down and address the Council as a whole.  He has done some very interesting work along these lines.

Anything further on the list of possible topics?  Bill?

DR. HURLBUT:  Gil has spoken to the importance of dealing with practical issues of immediate concern.  As difficult as it is, I think given the stage of science we are at, we need to continue the dialogue on the issues raised in item 7, boundaries of the human, because the Dickey amendment and several other recently launched legislative proposals relating to issues from patenting of humans to cloning and so forth use the terms "embryo," "organism," and specifically "human organism."

I think somebody ultimately is going to have to define what those terms mean because science will be very creative in finding ways to produce ambiguous entities that may hold out profound possibilities for progress and not actually evoke the moral concerns that are associated with in some people's mind the moral standing of the embryo.

I think in order to open the future possibilities in the whole range of science, as we have discussed, all the way from assisted reproductive technologies, which certainly we will want to study the fertilization process, all the way up to uses of developmental trajectories that will be engaged in regenerative medicine, we are going to have to discuss, somebody is going to have to discuss, the meaning of human- animal chimeras, the definitions and significance of categories of natural kinds, the generation of human parts, the parts from wholes.  Certainly as we move from genomic and proteomics, now on to developmental biology as a major focus of the advance in science, we are going to want to study embryogenesis.  We need to try to find ways this can be done with moral consensus.  To do that, I think we need to address the question of what is the minimal criterion of the human organism?

Robby mentioned yesterday some suggestions that I and others have made for the possible production or procurement of embryonic stem cells through entities that are not necessarily entities with moral status.

I think that we need to address these issues.  I know they are conflicted issues, but, on the other hand, we have an opportunity as a Council to do something that no other council will ever have the chance to do.  And that is at this early stage of the advancement of these particular sciences, we can address, we can frame the terms of discourse, define the terms of importance, and work to defend human dignity while we open the science.

I personally feel as though we could make a great contribution on that level and do something that does more than define dangers but actually opens up positive possibilities; in other words, a very constructive dialogue.

I know that won't be an easy conversation, but I think it takes us beyond the issue of the conflict over the inviolability of human life to an effort to find consensus on important issues that relate to other secondary issues of moral concern regarding obligations to nurture, defense of integrity, affirmation of significant boundaries and transitions, definitions of what an organism actually is and what a human organism actually is.  If we don't do it, I personally think we are failing in our opportunities and our mandate.

So I feel very strongly personally about addressing the issues in item 7.  I just feel like it's thrust upon us and we should greet it.


PROF. FUKUYAMA:  I support Bill in this for the reasons he gave.  For example, in our work, in my work and in your work, we use the term "human dignity" all the time and "threats to human dignity" or "assaults on human dignity."  Now, I have my own definition of what that is, but it's probably not the same as yours.  And I don't think that we as a Council have really grappled with trying to come to some kind of consensus about what the essential characteristics of our shared humanity are that we need to defend.

In fact, that very word is becoming increasingly politicized because the Europeans use it a lot.  I know there are a lot of Americans who said, "Well, this is just Euro- speak for people who want to restrict technology, and it actually has no substantive meaning."

I think AAAS or some body in town actually just had a conference on the concept of human dignity to try to unpack the various meanings of that, but it's not just a lexicological issue.  It's really a substantive issue about what we think ought to fill that particular container.

CHAIRMAN KASS:  All right.  Let me make a procedural comment.  We have got some support for a number of important things here.  I think I know what some of the next steps would be on some of them, I think on some of these others, perhaps this last exchange...

By the way, the Council has come under attack for its use of the term "human dignity" in the bioethics community, "empty slogan."  We have an obligation to try to fill out something of what we mean here.

The staff had actually its first session.  And we mean to make it our own business to try to figure out what in the world we are talking about when we talk this way.  In particular, if you are going to talk about the dignity of human procreation, you had better know what you are talking about. So we are going to do some of that in- house.  I think the boundary questions that Bill raises are an important manifestation of that.  I think we are going to have to turn to some individuals here and ask you to draft some things.  The staff can't simply write on every one of these topics.  I am fairly confident that, Bill, I will turn to you, and Mary Ann for some help elaborating some materials that the rest of us can read.

I am very encouraged by the discussion.  I think we have settled on moving the ball forward on a number of very large, all of them important topics.  There is probably more here that we can do well, but we have got enough encouragement from this discussion to begin to take the next steps and plan for what promises I think to be a very interesting and I hope fruitful next term.

We have run a little bit over, but we are now at the time for public comments.  We have four people who have asked to make a public comment.  If the Council members wouldn't mind simply not taking a break, we will go directly to the public comments.  We will probably adjourn close to noon.

  - The President's Council on Bioethics -  
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