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Meeting Transcript
September 9, 2005


COUNCIL MEMBERS PRESENT

Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise 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

Francis Fukuyama, Ph.D.
Johns Hopkins University

Mary Ann Glendon, J.D., L.LM.
Harvard University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Peter A. Lawler, Ph.D.
Berry College

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

Diana J. Schaub, Ph.D.
Loyola College



INDEX


WELCOME AND ANNNOUNCEMENTS

CHAIRMAN KASS: Good morning.  Welcome, Members of the Public, Council Members.  Thank you very much, once again, for last evening.  It's my great pleasure to start this session of Council by welcoming as our guest for today and soon to be new colleague and Chairman of this Council, Dr. Edmund Pellegrino, who sits to my left.  Dr. Pellegrino, if he's not already known to you all, should be.  He has been a physician for more than 50 years, still practicing medicine, where he's Professor of Medicine Emeritus at Georgetown University School of Medicine and makes rounds on the wards.

November, I think, is the next tour of duty.  He has been one of the country's leading thinkers and writers on the philosophy of medicine, the doctor/patient relationship, the founder of — co-founder of the Journal of Philosophy in Medicine and one of the clear thinkers and wise guides in the area of ethics and medicine.

He's had administrative positions with organizations, I'm sure, larger than the chairmanship of the President's Council on Bioethics, the last — well, not the last, one of them being President of Catholic University, was Vice President of Yale New Haven Hospital, ran the hospital and I can't tell you how delighted I am that Ed will be replacing me in the Chair. And to quell any gossip from anybody who scribbles, I will be remaining as a member of the Council and will be delighted to continue working with all of you and under Ed's leadership and guidance. 

So please join me in expressing our warm greetings to our new colleague.

(Applause)

CHAIRMAN KASS: I've asked Ed to sit in this morning because the two topics for today are of a special interest for us going forward.  The first session is entitled "Taking Stock: Looking Back and Looking Ahead," in which we will have a chance to reflect on what we've done together these past four years and to offer some suggestions and thoughts about what we might do, suggestions we present amongst ourselves but also for Ed's consideration as he contemplates the new directions.

And the second session will be on the "Medical Vocation Then and Now," a subject not only dear to the new Chairman's heart but absolutely central to many of the things that we've been talking about and will talk about in the future.  I'll introduce that session when we go forward.  I think we should divide this session really into two parts.  It's very rare for any group of people, except in therapy sessions, of group therapy sessions, to actually sit together and reflect openly and in this case, in public, on the work that we've done and to try to think hard about what it means to try to do public bioethics today with the kinds of issues that we face, not primarily to settle scores or to deal in anything petty, but to see if we've somehow learned something that could be put to use in making the work better as this Council goes forward.

And then second, I think we should do as we've done on previous occasions, talk about possible topics of importance that this Council might continue in its third term.  Some of those things surfaced yesterday and I thought you might like to bring them back.  This is sort of strange, but I would like to ask — so as to save time, you've been given as a background paper, the talk that I gave a year ago and is now going to be out in the Kennedy Institute of Ethics Journal within a couple of weeks.   So as not to waste your time but because I would like to get certain things in that article in the public record, could I ask unanimous consent to put into the minutes of this meeting as if read a few of those general reflections at the end so that people who are not here but who know us only through the transcript of the meeting and will not see that paper, can at least have one man's perceptions of these matters.  Is that all right?  Good.

Then let me introduce the discussion today, the more reflective part of the discussion with these comments.  This Council has been guided really by two inter-related purposes.  The first purpose has been to pursue what we've been calling a richer bioethics.  That is to say, to consider not just the technologies or the way in which they give rise to questions familiar to either clinical medical ethics or to general sort of common concerns of a liberal democratic society, but also to see how these things which impinge upon our humanity, in fact, touch our personal aspirations, our human longings, our duties, our — the way we actually live life every day and in deep and serious ways. 

We've tried to think about what it means to suffer, what it means to welcome a child into the world, what it means to perform with excellence, what it means to respect life, what it means to age well and care always, and almost everything we've done has been informed by attention to these anthropological and not merely ethical matters.  And I don't think that this Council would have satisfied itself with the view that all that bioethics can say is that everyone should make informed choices for themselves.  As a public bioethics body respecting, to be sure, the pluralisms of the society, we've been asked to offer as the charge this Council had, the results of serious inquiry into the human and moral significance of these advances and that we've tried to do. And speaking for myself, I think that's something that we should be very proud of.

The second purpose informed by the first, but not always easily or comfortably related to it is to try to be useful to those who are charged with making public policy in the age of biomedical science, on issues ranging from stem cells and cloning to the regulation of biotechnologies, to the care of the elderly, the demented and dying. 

We've tried to take seriously our mandate not just to think but also to guide, and not just to think about ethics but to think also about self-government on issues that are both ethically profound and scientifically complex.  It's, I think, not for us to judge our achievements or failures in this area but it remains for me a challenge and a puzzling question — what's the relation between this search for a richer bioethics on the one hand and the desire to be genuinely useful in the concrete decisions that public policy makers face, and in particular the topic of regulation.  

We've tried our hand at this.  We are quite concerned that we live in a society which is largely unregulated when it comes to all of these revolutionary areas of biotechnology.  And we know that there are obstacles to going forward here, but it seems one of the things that is very much worth pondering as we go forward, can we hold these two tasks together and could we do either or both of them better?

That's to prime the pump.  I really — never mind that there are scribes possibly in attendance.  I think we should have — this is not a time to pat ourselves on the back.  It's a time to try to figure out what have we learned from trying to do this work together and what could we do in order to do these things better? 

MALE PARTICIPANT:  This is the first time in history you've completely silenced the Council.

CHAIRMAN KASS: No, no.  I knew it was a good question.  You ask a good question in class, nobody speaks.  Diana, was that an offer?

PROF. SCHAUB:  I don't know if it addresses what you've asked us to address but I think we ought to think about whether we have done enough to reach the public.  I mean, I think the Council has done an incredible job on the score of a richer bioethics, but has the public been sufficiently enriched by what we have done?  I mean, have we gotten it out to them?  So I mean, I just wonder if there are small things that — I mean, that we could do more in the way of meeting that charge of educating the public and informing the public. 

I mean, the books are out there but people are not always readers.  So, you know, ask ourselves, you know, are these books getting into the hands of the people that we want them to get to and for those who are disinclined to read, are there other things that the Council could be doing?  I mean, I know that individuals do a lot of public speaking to, you know, university crowds and you know, other kinds of fora, but people do that as individuals.  And the things that I've done like — done in that line to alumni groups and, you know, college audiences, there's a great deal of interest and there is a great deal of ignorance. 

So I mean, I wonder whether the Council could do something like, you know, take this show on the road, you know, have a — these are public meetings.  Stage the public meeting not at a hotel in Washington, D.C. but at a major university or I don't know, I mean, it would just — you know, trying to figure out are there other things that we could be doing or at the risk of being too political, part of the charge is to inform policy makers and legislatures.  Are there acceptable ways to run information programs on the books that we have — books that we have written for you know, staffers, congressional staffers?

CHAIRMAN KASS: Thank you.  This thought has — I'm not going to editorialize after every comment but on this particular point, it's been a concern of mine from the beginning and we've been so preoccupied in a way with doing the reports that there hasn't been a lot of time and energy for these things, but to send even staff out with the reports to college campuses and do things like that was one thing that we considered.  I'd also considered putting together a small group of journalists and have seminars with them on the reports.  I mean, just make them read the things instead of the last page, and have regular seminars, but just there wasn't time and energy enough to do that given these other things. But a lot of what we — a lot of what we do insofar as it's not — well, two things, three things.  First of all, if one is speaking about the policy makers directly, Charles Krauthammer told me when I took this job, "In Washington if you want to educate anybody, you have to tell them what to do, so a report with no recommendations is politely ignored."

I mean, people look and say, "Is there anything here I really have to pay attention to?  I'll read it when I have time", and these people have lots on their plate.  So — but then the people who really do the educating are a couple of dozen journalists for, you know, medical journals, Science, Nature, the general press, our fine observer, Mr. Saletan here, who is a very astute reader of these things, and if one could sit down with this group of people and get them to go past the things which very often make up the stories about these matters to get them to deepen the accounts that they give, there would be a way in which one could multiply the educational effect through the people who actually do a lot of the public education for worse and sometimes for better.  And that's, I think, something worth thinking about.

There was a third thing, but the gray cells are gone, so let it be.  Please, Robby?

PROF. GEORGE:  Leon, I think the largely unwritten, even unremarked, story of the Council was there right at the beginning and it's the remarkable diversity of points of view on the Council.  The President's willingness to appoint to the Council not only people who agree with his fundamental moral outlook on the questions before us, but also some who don't and some who deviate very, very sharply indeed from the President's own perspective. 

When it became clear to me that that's the kind of Council we would be, I wondered what the result would be in respect to the reports that we would be able to put out and what the value of the reports would be.  Since most, perhaps all previous bioethics councils have had more uniformity of viewpoint on them, they were able to write reports that took a point of view and made an argument and advanced that argument quite vigorously.  Our reports have not been shaped in that way precisely because of the diversity of points of view on a number of occasions.  So I wondered whether they would be valuable.  Well, my conclusion, now that we have a good deal of experience with them is that, in fact, it is very valuable to lay before the American public and particularly before people who are genuinely interested in these issues, the best arguments to be made on the competing sides of the question and the best available information as to what the plain facts of the matter are.

In our initial report on cloning, although we were very badly divided as a Council, we were, I think, able both to lay before the public the strongest arguments that were available on the competing sides of the question and also to clarify the underlying facts about which there was floating around out there a lot of misinformation.  We were also, and I think a very, very important contribution neglected, unremarked, able to clarify the language and to be clear on what we were talking about at a time when the need for such clarification of language was very, very important.  I hope that we will continue and I am confident that under Dr. Pellegrino's distinguished leadership, we will be able to continue to produce work of this quality and accomplish what we have been able to accomplish with the reports that we have done this far. And when the day comes when this Council wraps up its work and perhaps, a new President of whatever party is elected and thinks about how to constitute such a Council if he or she wishes to have a bioethics council and I suspect that bioethic councils will continue in our future, I hope that a lesson can be drawn from the diversity that we've had on this Council and the valuable work that's come out of the diversity on the Council.

CHAIRMAN KASS: Thank you.  Frank Fukuyama.

PROF. FUKUYAMA:  Well, in the spirit of Dan Foster not wanting to grow extra muscles by patting ourselves on the back, I guess I do want to register my own, you know, one area of disappointment in what the Council has done.  I accepted Leon's invitation to become a member of the Council, with really one purpose in mind, because I wanted it to address very forthrightly the regulation issue. And my hope at the beginning of the Council had been that this might develop a little bit like the Warnock Commission in Britain in the 1980s which, you know, studied the upcoming, you know, revolution in biotechnology and then recommended creation of the agency that became the HFEA, the Human Fertilization and Embryology Authority in the UK. 

And I had hoped that our work might be able to lead in that direction.  Now, I think it became clear as we started very seriously delving into the regulation issue, that we would, you know, touch on the margins of that but I think that politically, I mean, it's not the fault of this Council.  I think it's just American political culture.  There's a kind of very deeply rooted anti-regulatory bias on the part of both the left and the right in this country for different reasons, you know... to produce the kind of situation that we have. And I think on the Council, the reason we couldn't go forward was a number of people, Gil and Alfonso, you know, raised this question, well, if you don't know actually what you're going to regulate or what the regulators are going to do and give them, you know, those instructions substantively, how can you say you can build the authority.

Now, I actually think we could have gotten past that because the HFEA in Britain regulates and permits stem cell research and research cloning.  The Assisted Reproductive Agency of Canada, this recently established body, prohibits research cloning and very strictly regulates stem cell research and they have almost the identical institutional structure.  And I think it would have been possible, actually, to recommend the creation of an agency with the appropriate powers and domain and specifications and actually then kick the ball down the road to the political authorities to decide, you know, whether it looks more like the Canadian agency or more like the British agency in terms of whether it either permits or restricts research cloning.  But, you know, it was a very difficult hurdle to get over.  We did, I think a very respectable job in the "Reproduction and Responsibility" report where we actually, as a way of trying to get past the cloning deadlock in Congress — I mean, in fact, we made multiple efforts to suggest to the political authorities concrete ways of, you know, breaking through the current political logjam so there would at least be some effort on the legislative front to address issues that we all agreed, you know, needed to be addressed.

I believe, however, that this is still an area that we did not, you know, push the ball all the way up the hill.  That was one of the reasons that I got independent funding for the study that I presented to the Council last December, where I just went ahead and on my own I kind of laid out what I thought this kind of an agency ought to look like and I think that's still on the national agenda. 

Now, being politically realistic, I think that what's going to happen is that, you know, various people will make suggestions along these lines and then at some point, some, you know, doctor is going to try to clone a human being and it's going to lead to some deformed, you know, horrible outcome and then people are going to look and say, "Well, you mean to say that this was legal in this country, that this isn't regulated?", and you know, people saying, "Yes".  Well, in fact, that is the case, that we don't have any rules whatsoever that prohibit this sort of thing.

And just as in — you know, as it took the Enron meltdown to discover that we actually did have very good, you know, accounting standards in this country, I think then people will be willing to politically take up this issue in a more serious way.  But I do believe that this still remains on — you know, on the agenda for not just this Council but future ones to think, you know, as Leon was saying, more concretely about not just legislative acts, but institutions that will, you know, help guide us and kind of structure political decision making in this area as we go on into the future. 

CHAIRMAN KASS: Thank you.  I would — I guess while people are collecting their thoughts, I would underscore what Frank has said but give, maybe one additional comment.  It — it's been one of my frustrations here, Frank, as well, though I saw very early on, I think it might have been Gil, Gil said he'd be all in favor of a regulatory body if we could — if he could identify the goods in the name of which the regulatory body would regulate and also appoint its members, otherwise he wasn't sure that one wasn't going to be as it were, giving carte blanche to something about whose moral rightness he had grave doubts, and it's too bad, in a way.  It was inevitable but too bad that we tackled the regulation question in the absence of any kind of — maybe we should just call it to begin with "oversight monitoring," which we don't even have other than on safety and efficacy criteria. 

It's too bad that we tried to do that around the series of innovations and technologies where the embryo stood in the center of the road.  And the embryo is really like Solomon's baby, we're not going to split the difference on that one.  Could you do something to think about regulation with the off-label uses of drugs? Much harder because those uses are decentralized.  You don't have any — it's much less visible and much harder to get ahold of.  If one were really interested not in the particular area that had some kind of oversight and regulation, but the principle that governance here means not periodically trying to ban something, but to try to separate the better and worse uses of these innovations and that it ought to be done by public means and not by accident, then it seems to me the real task, recognizing the political difficulty until there might be such a biotechnical Chernobyl, would be to try to find some area where one could think about this without having such a hugely divided view as to what the — what the morally right thing is. 

And I have to confess I haven't really thought this through at the bottom, but it's not obvious to me.  It was partly an accident of what we started on and of the cloning report that we turn to this intersection of genetic knowledge, reproductive technologies and embryo research as the area to try to do this, but it became very clear after a couple of meetings that at least in this body and this body being somewhat representative of the larger community, that intractable question was going to at least for the time being stand in the way of getting some kind of an agreement.

So it is a disappointment of mine.  It's a disappointment that comes also with recognizing the reasons why we have this in addition to the American hostility to regulation, the fact that the scientists  and the biotech people don't want government mucking about at all, but I do think that it's worth all of our attention to see if we could find some other area appropriate to things that we're doing where it might be more — where we might be more successful in suggesting some kind of oversight and monitoring body and, perhaps, even some regulation.   Gil?

PROF. MEILAENDER:  One thing I want to note, this is not the main point I wanted to make but in relation to Diana's comment is, I had several times suggested that we should meet in other cities.  It's logistically sort of difficult and I think that was one of the discouraging factors, but I thought it would be interesting to do that. 

But the main thing I want to say may seem perverse to Frank, for instance, maybe even to our distinguished Chairman, but for me, the — and I'm even willing to grant, I guess, before I say it, that this may be to some degree a matter of temperament, I guess, though it is in some ways also for me, anyway, a matter, you know, having taught for 30 years, the day before I left for here, I got an e-mail from a student I taught has to be 20 maybe 25 years ago, I had to pull out my file of old grade sheets to figure out who she was, but who had read some stuff of mine and was helped by it recently and wrote me.

If you do — if you teach this kind of stuff, your clientele comes and goes and if you'll pardon the theological formulation, you have to live by faith and not by sight.  It doesn't pay too often to ask whether you're accomplishing anything.  You just sort of have to do it and hope that somebody out there is benefiting from it.  And maybe over the decades this has had an effect on me, but I very seldom ask what I'm accomplishing.  I don't like to ask that question.  I prefer just to kind of let it go and see what happens.  And for me the most satisfying moments have been when we haven't worried about whether we're going actually to accomplish something in a policy sort of sense but have simply tried to sort through a question and say something about it.

Now, it may be true, Leon quotes Charles.  It may be true that that falls into a black hole.  I don't know about that but on the other hand, in the moments when we have attempted to shape policy, no one could claim we've been extraordinarily successful in doing so.  So I think that actually the best work we've done has been in our attempts just to sort through hard issues and not worry too much about the implications.  The moments when we've tried to come down to a point have several times been excruciating but also, I don't know that they've gotten us very far.  So I don't think it's a bad thing that this should be, as Robby said, a very diverse body, that we should not necessarily be able to come to a point that it should be somebody else's responsibility to try to accomplish something, and that we should just think and talk and argue about questions.  That doesn't seem to me to be bad and I understand that it may seem perverse.

The one additional thing that I'd add is that — and this is the place where I do have a little different tact from our Chairman's.  See, I don't think of the — what I grant are the unresolvable life questions or whatever you want to call them, as sort of getting in the way of making progress on other things.  I just think they're basic.  You know, if you're going to talk about bioethics, sooner or later you're going to talk about whose good counts among us and if the price of recognizing that those questions are basic is to be a little — to accomplish a little less, that's okay with me, you know.  I — that's sort of the story of life as far as I'm concerned. 

So I wouldn't want to — I wouldn't want to, as it were, bracket those basic questions just in order to try to get somewhere because I think usually you don't know where you're getting actually and you only find out 30 years later anyway and it's therefore, a bad idea to make that your chief priority and I think we — a lot of times we haven't and that's good and those are the best times as far as I'm concerned. 

CHAIRMAN KASS: Alfonso.

DR. GÓMEZ-LOBO:  In many ways, I feel in a similar manner as Gil does.  Accomplishments are something to be taken into account but not too seriously.  But, however, I would like to, perhaps rehearse some of my differences with Frank on these matters.  Even if one is not out there to be successful, still I think the question of regulation is important and I think that, of course, the political community has to find regulations for the protection of some of its most important values.  I wouldn't doubt that for a second.

And my real problem with the British Human Fertility and Embryology Authority is just how it works.  That's where my main problems are.  First, I have a very, very poor opinion of the Warnock Report itself.  I was astonished when I first read it how shallow it is philosophically.  It puts forward a very simple utilitarian argument then a moral sentiments argument and leaves it at that and then comes down on the 14 days without further ado.  I mean, it's really astonishing how little reflection there is.  For instance, by comparison, and I'm afraid I'm patting ourselves on the back again, our reports are much more careful in the — in laying the foundations for whichever way the regulation may go.  It's just incredible that the British Parliament should have taken that report as is, as basic, and passed the bill on those terms.

But again, since we are dealing with such a fundamental value for our society for the political community, value of life, I just don't see how a committee of, I don't know how many members the British committee had, but 20, 30 people, are making such important and drastic decisions on their own authority.  Now, there is guidance and there's the possibility of guidance as Frank has reminded us of the Canadian case, but if I could have my way, my preference would be that there be regulation at a much more fundamental level so that it would not be a small group of people that were making — would be making these decisions.

And if we could move in that direction, that would be just wonderful in the second stage, but again, it's not going to be possible without a much deeper study and discussion of the grounding issues here. Thank you.

CHAIRMAN KASS: Rebecca.

PROF. DRESSER:  First I want to say, unsurprisingly, how beautifully written this article is and I personally enjoyed very much hearing that speech as well as reading your response finally, sort of how you see our work, and it's a relief for you to speak out and I appreciated that.

In terms of topics, I'll throw out a couple that we have talked about previously.  I'm not necessarily advocating on their behalf but just to get some topics out.  I think yesterday and previously we have discussed trying to do something on the health care system.  What exactly that would be, how we could provide any wisdom given our composition without health policy people and so forth, is — those are questions but that's one possible topic. 

The other we discussed in the past was commodification of the human body and the role of the private sector.  I think yesterday we heard a lot about how the private sector is influencing the treatment and the options for long-term care of older people.  You have many lobbyists promoting the cutting edge therapies and the drugs and so forth.  And those are the things that tend to get reimbursed and supported.  You don't have the lobbyists supporting plain old personal human contact and social works kinds of things and so those are not as available in the system.

So the role of the private sector is underlying most of the topics we've considered and so maybe it would be interesting to do a topic like commodification of the human body that would bring it in a little bit more directly.

CHAIRMAN KASS: Thank you.  And let me use Rebecca's turn to possible topics to say that both questions are on the table and we shouldn't let this session go by without really offering eager thoughts and collectively trying to formulate some suggestions of things that might go forward.  Paul and then Mary Ann.

DR. McHUGH:  Well, I wanted to follow up  with what Rebecca said but I also want to follow up on what Mary Ann also said and was very persuasive about yesterday.  I think there are two things that I would like to see the Council move towards in relationship to discussing matters of American life and ultimately following the Krauthammer rule in telling people maybe what they ought to do.  We've spent time talking about the aged.  Now I think is the time to talk about children and the family.

It is at last becoming clear that the forms of families that have been developed, especially divorce and the like, are very harmful to children's psychological development and the casual way that we approach that on regulatory and various other ways has been a scandal to our country as is now clear to all psychiatrists who care for the products of those families.  But there are many other things about the  child's position and its vulnerability towards — not simply towards its life, although that's at stake too, but very much in relationship to its flowering and flourishing as a human being and what constitutes the kind of structure that if it can't be provided by the family, we should be talking about how it could be provided and what kinds of things come natural to a family and what kinds of things, therefore, have to be structured elsewhere.

In this sense, I'm reminded again, as a psychiatrist, is what happened when we did the deinstitutionalization of the mentally ill.  For awhile, we simply turned them from the back wards into the back alley of our cities until coherent community psychiatry people like the leader at Hopkins, William Breakey, began to talk about how we needed to reconstruct in the community the kinds of resources that were easily available in the institutions — the occupational therapy, the vocational therapy, the various kinds of services that were previously available and did great good for those people in the message of a less confined life for them.  So that's one issue that I think is right before us and might well, as I say, for the child development policies that even the discussion of them and even the considerations of the data that are now available would be extremely helpful to developing policies.

The next thing related to the new director is a point that we've made several times before, that this is a Council on bioethics and maybe the time has come at some point to talk about whether the bioethics move has met its promise.  Some — the claim was that with the new technologies and the new availabilities, that we really needed people who had fought seriously about these matters in order to help us doctors to deal with the issues in the front.  Well, that continues to be a — what we're seeing a lot, yesterday, and empirical question at least and very much a question that I struggle with and I hope our Council would.

Our coming Chairman has done wonderful work in my opinion in discussing these matters and challenging what sometimes becomes the lingo of bioethics, these autonomy words, beneficence words and talk to us more coherently about the sort of virtues that spring up from a flowering opportunity to care for people and the appeal that people have to you when they come asking you for your expertise.  So at some point, I would like to hear the various champions of bioethics come and tell me and us and therefore, the American people, that they've advanced us from what were the ethical principles that were taught to me in the '50s before bioethics was even heard of.

CHAIRMAN KASS: Mary Ann.

PROF. GLENDON: Well, Dan, I don't know exactly where the deltoid is, but I'm sure wherever mine is, it needs some exercise.  I do want to amplify a little bit the theme that Robby sounded about the diversity of this Council.  Robby mentioned the diversity of viewpoint but there are other kinds of diversity that have posed a real challenge for us and I think one of the great achievements of this Council has been to overcome them. 

How difficult it has been for people to communicate across disciplinary boundaries. That's something, I think, one tends to take for granted that you can put a group of scientists and humanists around a table and since we're all English speakers, we will be able to get on with the business.  I would say it took us even a year or two to move across the boundaries, some of us with great enthusiasm.

I felt about the four years on this Council it's like going to graduate school again.  It's been wonderful.  It's been a great education.  And there's another kind of diversity that is equally challenging and that's the one that comes out in the exchange between Gil and Frank.  Some of us are more practice-oriented.  We're looking for concrete recommendations for conclusions, solutions and some of us say, "Oh, oh, be careful.  You don't want to rush to the recommendations and conclusions unless you're sure you have really understood these very complex problems". 

And I think the way we have dealt with that — and our current report on aging is a beautiful  example of how we have kept that tension alive, that theory and practice are, indeed, the two blades of the scissors and you cannot make a pleasing construction without using both of them.  And it's always going to be a tension, but it's one that I would hope the Council will keep alive, that we can't really go off in one direction or another. 

And finally, Paul has said it already, better than I could but I would urge the Council in the future to try to adopt a capacious understanding of bioethics along the lines that Rebecca has often recommended and in the case of attention to the problems of demographic change in our society, keeping in mind that children as well as the elderly, are at risk of being marginalized and that questions about priorities and research and allocation of resources in our country are questions that have a strong ethical dimension.

CHAIRMAN KASS: Peter.

PROF. LAWLER: Let me just comment on some of the ideas put forward.  First, I want to agree with Alfonso and Gil that we professors of abstract subjects really can't think in terms of accomplishments very well.  By coincidence, one of our new faculty members asked me, you know, a relatively old professor, "How do you know you have accomplished anything"?  And then my dean asked me, "How can you assess what you've accomplished"?  And these things make me feel guilty for the rest of the day but then occasionally, there will be a moment like Gil had where you know, well, maybe I have accomplished something.  In terms of taking on the profession of bioethics, in my opinion, all our reports take on the profession of bioethics. 

The question would be, should we continue our indirect assault or go to a direct assault?  A direct assault might result in many casualties and I've been very relieved in attending these sessions of this Council that we've never had a card-carrying professor of bioethics testify.  And —

CHAIRMAN KASS: That's really not true.  It's repeated but it's just not true and allow me to correct that. 

PROF. LAWLER: Okay, well, it depends what you mean by card-carrying.  I don't think Mr. Caplan has testified.  But I'm saying the autonomy model of  bioethics is taken on so forcefully and beautifully in the report that just came out that I don't need — I don't think we need to name names and go after people in particular.  We'll just continue what we're doing, thematically without showing that the dominant academic approach to this is rather bankrupt.  We can show that by example without saying that straight out.  I could be wrong on this.

PAUL MCHUGH:  Psychiatrists mainly.

PROF. LAWLER: And many other members disagree with me on that, but the — and I think we're on the cutting edge of this and they are the ones who are washed up actually is my true opinion.  An issue that —

CHAIRMAN KASS: You're now going to come to the provocative comments.

PROF. LAWLER: No, I could say more, but I mean, we need to be constructive now.  The two issues that were brought up yesterday that caused me to despair part of the evening.  One was reform of the health care system.  Our report says that should be directed to the new Commission and I think with good reason.  We don't have the technological expertise and yesterday we heard that these days, which seem like critical days, will be the good old days in the future.  Everyone is dissatisfied with the present system.  No one knows what to do.  Maybe this is not our task.  Maybe this requires more technical expertise than we have. 

In terms of the demographic changes, the importance of those is presupposed in the existing report, the report that's going to come out at the end of the month, but certainly more study there and what's the world going to be like with many fewer children, I would be in favor of that.  But the issue yesterday that was brought up as a platitude many times is we have to value caregiving more as kind of a content imperative.  We have to value caregiving more but no one explained how we would actually do that because caregiving, like everything else, has been commodified. 

It's a sustenance kind of thing.  How do we value caregiving more?  So I would actually like to see us study that as a separate issue.  You can't just say you have to give these people more value, you have to have some plan for giving people more value in an individualistic autonomous world where people who just care are devalued more and more.  And so in general, the general issue of commodification seems to me to be huge.  And so maybe we ought to focus on one particular area where commodification is a problem.  And I might think that area might be the valuing of caregiving. 

CHAIRMAN KASS: Thank you.  Diana.

PROF. SCHAUB:  Yeah, I just wanted to make a quick response to that anti-accomplishment crowd.  That was a beautiful phrase, Gil, about living by faith and not by sight, and I'm —

PROF. MEILAENDER:  It wasn't original.

PROF. SCHAUB:  No, no.  You brought it forward in a lovely way.  And I'm certainly in agreement we don't want to, you know, send out surveys to see how we're doing and we don't want to come up with assessment mechanisms or anything like that.  We want to do what we do and give ourselves up to our inquiries in some sense for their own sake.  We're all, you know, scholars, and we trust that there will be those who will read and be effected by our scholarship. 

So I have great sympathy with that, but  I would just point out, Gil, that you're — and Peter also, that you are teachers as well as scholars and the reason that your student read you writings was because you were her teacher first.  And so my opening suggestion was really that the Council think of itself as having a teaching mission as well as a scholarly mission and to give some thought to what that would mean to have a teaching mission.

And let me just add that my notion of teaching is not lecturing the public or being dogmatic in some way, but engaging the public in the same conversations that we've been having or certain portions of the public that we think need to — you know, would benefit from these conversations and to think about ways to find the ways to do that.  And this would be regardless of, you know, what topic we take up in the future.

PROF. LAWLER: Alfonso.

DR. GÓMEZ-LOBO:  On the topic of future themes that we may study, I happen to — after thinking about it a little bit, I think I side with Peter in the sense that I'm not sure it would be wise to have bioethics, per se, as a topic of discussion of the Council.  The reason is this; I'm very skeptical about the field of bioethics, per se.  I think that the real battles are fought not at the bioethics level but at the ethics level and the deep disagreements on philosophical outlook that undergird particular bioethics positions, those are very hard to reconcile, and it would get us into an endless seminar of philosophy here.  And I'm not sure it would be wise to do that. 

I think that we should do our little portion of ethics/bioethics and put forward our arguments and, of course, if there are antagonistic positions in the public, they are going to be discussed.  On the other hand, I happen to think that the topic of children is exceedingly important.  I agree with Mary Ann and those who have spoken about that, because there is tendency to instrumentalization in present day culture.  I mean, technology drives us to see most things as instruments and sometimes I get a sense that even children are viewed as instruments, instruments for one's happiness, instruments for one's prosperity or on the other hand, as obstacles, as instruments that do not yield their fruits.

And that's why I think it is a very important and deep bioethical or ethical question and I sort of suspect that if we start studying it, we're going in for certain surprises.  If we — you know, if we bring in people who have thought about the field, who have had the experience, and deliberating about that seems to me a very important task.

CHAIRMAN KASS: Gil.

PROF. MEILAENDER:  I didn't mean to launch us on a discussion of teaching philosophy.  That was not my intention, though I'd be happy, Diana, sometime to take those questions up with you.  I hate to see you siding with those who want assessment plans or anything. 

(Laughter)

PROF. MEILAENDER:  But I wouldn't want to see us take up bioethics as a topic, not because I don't think there's a lot of important stuff there.  I don't carry any animus against the field and I don't think we do as a body because I think it would focus us really solely on certain kinds of questions of method and that, to me, doesn't seem to be what we're most suited to do or even could do best.  There are two places, one of them — I'm just going to second what's already been mentioned.

One hasn't been mentioned that I think that we could — that are important and that we could profitably do work.  One of them I've mentioned before and we've always shied away from it and we probably shied away from it for very sound reasons, and it would — if we think we've found ourselves in impenetrable thickets on previous occasions it might be even worse, but the whole range of issues surrounding organ donation and transplantation are really very much on the table these days and are very hard to sort through, that kind of working definition, the criterion of when you know someone's dead is under pressure from several different directions.  If you're interested in the commodification issue, the sale of organs or various sort of forms of transaction that perhaps fall a little short of sale, are also there.

So — and even questions just about whether it's always worth it, whether a certain kind of desperation enters in.  Those would all be important questions to ask, though we might find ourselves with more people angry at us than we've already created around the country.  So — but I do think it's an important issue. 

The other one, I think that the children business is important.  I just wanted to add a couple things to the way it's been mentioned.  I mean, in a way it would be nice, if we looked at end-of-life aging, if we looked at children that would be nice.  I think there would be a whole range of questions that haven't been mentioned.  I mean, just to think about how one ought to think about children.  We sometimes may think of them simply as kind of miniature adults and that's not necessarily the right way to think about them. 

In the bioethics literature, they're often just another vulnerable population, along with various — you know, whether that captures everything that one ought to say about them.  The use of children in research is still and will continue to be an important question but not just in scientific research, use of children in advertising.  I mean, there are all sorts of questions one might raise.  Whether we have special responsibilities to children with disabilities.  So there'd be a range of questions one could take up.

Now, you know, whether they'd all fit together into some single project, I'm not sure I could say right now, but it's a very rich topic with a lot of different angles that could certainly profitably be pursued.

CHAIRMAN KASS: Dan Foster.

DR. FOSTER:  I just want to say a brief word in agreement with Frank's initial comments.  You may remember that in the cloning report that the minority group on which I sat, was in favor — voted, was in favor or research cloning and — but it was coupled with the provision that proper regulation be attached.  That was part of the official position that we took under those circumstances, recognizing that there would be certain biological and other dangers associated with these techniques that were worrisome and they should not be carried out freelance.  And so, as a consequence, it's almost necessary for the views of these new techniques that there be some sort of regulation.  We made an attempt to — you know, we'd say, "Well, Congress or whoever shouldn't allow you to make, you know, a human embryo with a goat", or something like that.  You know, there were broad regulations and one thing that we might at least say right now, the probability is that the regulation of these events is going to be vested in the FDA and that may be a wise decision or it may be an unwise decision and it wouldn't be inappropriate, I think, for this group to at least give an accent to what type of regulation might be used, what sort of body might be used even if not giving all the details about how this would go.

I think that this — the reason that I think this is increasingly important is that things are speeding rapidly in terms of stem cell research.  We came up with a White Paper about ways to avoid the embryo question.  I think that's going to happen real fast.  The embryo question is going to disappear and not by the techniques that we talked about, maybe with a variant of Type 4. 

As it turns out, Dick was at the London conference and I have not yet seen the patent, but if it is possible to, in fact, make what has been called the stem-bred, which is a remarkable technique, the details because if there's a patent there or not, but what Yuri Verlinsky in Chicago did was to take a stem cell line, I think I mentioned this before, it's probably one he made himself rather than an NIH stem cell line, and merged it, it was basically a cloning experience, with a somatic cell.  And what he was — and it was a — it was a female cell line and the cell line that he developed was an XY because it was taken from a man.

And so he established — he's established 10 cell lines, at least he's reported, from diseased humans, which is what we want, that's why you want research — the problem with the lines we have, they're all from healthy, in vitro fertilization things.  They're not useful in terms of trying to deal with disease.  If that's the case, if that turns out to be the case, that you can completely avoid the embryo question just by using stem cell lines that are already there as the recipient and establish an immortalized line from Parkinsonism and so forth, then we've immediately got to consider the possibility of injecting these things into humans and things of that sort.

Now, the other — the hybrid model that was just put out, you know, which, you know, you made a heterokaryon, in other words, it was a merging of a somatic cell and a stem cell, and you got a dual nucleus cell to start off with and it differentiated the somatic cell, so it was like a stem cell — the problem with that is you've got to get rid of half of the chromosomes and so forth, and that's going to take a lot longer, but my point I'm trying to make is, that I think the embryo question — I might be wrong, but I think the embryo question is going to disappear because we're going to be able to make these stem cells without having — every having an embryo.  I mean, that was what Bill Hurlbut wanted to do in his model, but once that happens, we've got to have some sort of regulation. 

You know, in the initial DNA things, you know, we've talked about this before, the scientists thought that the RAC committee — we had to decide who was going to get to do and what was going to be approved, you know, the common thing.  So my sort of long comment here is that I believe it would be very important to do what Frank has said, maybe in a broad sense to say, well, there are several models by which one could do this: a scientific model, a regulatory model of the Canadian or UK type, I'm not — I don't care about that, or some modification of the FDA, but somebody is going to have to say what we're going to do.

We're not going to do anything with these lines that we have — that NIH has.  They're worthless because they're drone.  I mean, use them for science, but not for therapy because they're all grown on mice cells, you know.  You got all these viruses and things.  Now, the Koreans, Hwang has  now made cell lines.  He's got 11 that were not grown on animal tissues and so that's also going to push things.  So I think the need for regulation is pretty — is much closer than what we say and the question is well, should we comment on it or just leave it to the other people?  You could argue either way. 

I would prefer for us at least at some point in the next term, to have a suggestion about how  this near imminent possibility of using stem cells and so forth in therapy is going to be controlled.  So I want to speak in terms of at least having us think about that.

I just want to make one other — two other real quick passing responses about whether anybody is going to read what has come out of these volumes.  Very few people will do that, that's true.  I mean, in medicine or science, I mean, there's a huge amount of information and you always long for the people who are practicing to have read the most important new things and oftentimes they don't have time and they don't do that.  And I think that we could — I think that we could say that these reports — and I'm not — let me back off.

At the Lasker Award, Joseph Goldstein, who was the Chairman this last Lasker Award, he had a very interesting analogy and there was a — I don't think I've ever mentioned this, there was an — there was a monument on top of one of the museums which was made out of stones — did I ever — well, the bottom stone weighed two and a half tons and the top one — so it was a pyramid.  And up at the top was a two-pound stone.  Now, Goldstein's point was that there were 550,000 papers published in the medical literature last year, 550,000 in the 4,000 journals at the National Library of Medicine archives, okay? 

And his point was that the mass of information that came out of there was worthless.  That there were only — there was a 2.5 pound set of papers that was importantly new and not trivially new and I think that you just can't worry about that.  I think that in one sense that we probably were in — I mean, what has happened here was really importantly new material that was covered and not everybody is going to read it but that's okay.  I mean, it will still have some influence I think. 

And I'm not so worried about — I don't think you can go on television — look 47 percent of Americans believe that all the species that exist today, existed exactly like they are today from the beginning of time.  Okay, 47 percent of Americans believe that, so robins haven't changed at all.  They've always been exactly — you're not going to be able to deal with that in terms of what we're doing.

The last thing I want to say is that the incentives about a lot of things like health care are so — it's going to be hard to overcome for the commodifications of — I would myself love to talk about transplantation again.  I said that before, but I heard the head of Humana speaking to the Chairs of Medicine one time and he said, and he had an impassioned speech by Tom Andreoli, who was then the Chairman of the University of Medicine Arkansas and he berated him as the head of a big company — You could say the same thing for a big pharma, about their lack of interest in terms of human things and medicine and so forth.

And the CEO said, "You know, it may well be that I would like to give a million dollars from Humana to support the Chairs of Medicine", or whatever he said, "but money is fungible and my first responsibility is to the stockholders.  I can be a cancer like Enron but my job and for all the stockholders is to make money for them and I might personally think that it was good for me to cut the prices of all the drugs such that you could do that, but then money will flee from Humana or from big pharma to another company and we're out of business.  So the incentives to do what we would like to do are very heavy in the very heart of what the capitalistic system is about.  So we shouldn't be — we shouldn't be sanguine about the fact that we can change that to make the health care system more — that has to come from the Government or something of that sort. 

So those are just casual comments, but the main thing is I hope that whoever is on this Council before would look into the issue of at least a broad overview of regulization.  I truly think we're going to need that.

CHAIRMAN KASS: Thank you.  By the way, let me suggest that we not have — despite the — I didn't mean it as an invitation.  No one should take this as an invitation to have an argument about stem cell research, if that's all right.

DR. FOSTER:  No, I don't think you understood me.  I said I think the arguments about stem cell research are going to be over because I don't think we're going to have embryo arguments and I know I've talked too long —

CHAIRMAN KASS: But lest someone rise to correct you on that — I see the hands of some people who might want to do that, and I wanted to tell them, don't. 

PROF. GEORGE:  I promise I won't.

CHAIRMAN KASS: Robby, take the floor.  Turn your mike on.

PROF. GEORGE:  This is not an argument about stem cell research.  I do want to comment on the first half of Dan's remarks but only again by saying that I agree with a very, very large measure of what Dan has said, including the call for us, and I think we are the body to do it, to think about regulatory — at least the procedural issues, the regulatory structures that really should be in place in view of what we know is coming.  Now, without arguing with Dan about the embryonic stem cell issue, I do want to register this; that of course I share Dan's enthusiasm for what Yuri Verlinsky has evidently accomplished, what Kevin Eggan has done at Harvard, Trounsen is doing similar things evidently in Australia and as you know, I've been an enthusiast and a cheerleader for Bill Hurlbut all the way along because I think his proposal is so important and my hope, like yours, Dan, is that we will be able to lay aside the embryo question because we've found a way around it, a way to obtain pluripotent stem cells without embryo destruction.

But I want to say why I fear the issue won't go away and just very briefly, it's this.  I think that the next issue on the embryo front is not going to be blastocyst stage stem cells, but rather the gestation in either an artificial environment or the female volunteer of the embryos for some degree of development after which they would be destroyed and harvested.  I think this issue is coming at us.  I've got an article coming out about this in the Weekly Standard in the next issue but more important and better than my article and I would commend to everybody on the Council to read it, or read them, these are very much worth reading.  Will Saletan has a series, a multi-part series in Slate Magazine online about this question.  So as much as we would all like to put the embryo question behind us and as hopeful as we are that Verlinsky and Eggan and the others, Bill Hurlbut will help us to get over the debate about blastocyst-stage stem cells, I just fear, Dan, that it's going to be with us. 

That doesn't detract in any way from the conclusion that you rightly draw about the need for regulation one way or another, but I just want to register ahat I know is a very uncomfortable point because I, as much as all the rest of the members of the Council, including our distinguished Chairman, would like not to have to argue about this all the time.

CHAIRMAN KASS: Ben has been waiting.

PROF. CARSON:  Actually, a completely different topic.

CHAIRMAN KASS: Good.

PROF. CARSON:  You know, I alluded yesterday to the concept of wellness and I want to just elaborate a little bit on that because, you know, when we're looking at many of these bioethical issues, we're looking at technological advances and how they can be applied, you know, perhaps to eliminating cancer or how we can get to a medication that might get rid of some of the amyloid bodies and perhaps deal with Alzheimer's, but I would hope that at some point we could concentrate on root causes of things because I think, for instance, the environment is a huge bioethical issue.  When we look at the way our environment is being constantly polluted by petroleum products and things. 

And you look at the amount of money, for instance, that has been spent over the last couple of decades by the NCI to get control of cancer and yet, the rates of cancer are actually increasing.  Why is that?  And I personally believe that there are some  major environmental issues and I know there are many others who believe that as well.  I wonder if we could have some of the experts in those areas come and talk to us and begin to maybe formulate some policies about that, because if we can put some science behind it, we might be able to get some real public policy done there. 

If you look at things like the dramatic increase in the number of children diagnosed with attention deficit disorder, you know, why is that?  You know, there have been, you know, a number of proposals, one of which is that it seems to be much more prevalent in this country than in countries where they don't vaccinate children.  Shouldn't we be looking into some of these issues in terms of some of the things that are placed in these vaccinations?  I think that that's a very good charge for a bioethics council.

CHAIRMAN KASS: Thank you very much.  Bill and then Frank.

DR. HURLBUT:  I don't want to reintroduce the embryo question.

CHAIRMAN KASS: I won't let you.

DR. HURLBUT:  But I do want to say this, that in the deliberations that were just referred to, we tried to shift the question off the difficult dilemma of when in the progress of development, the developing human embryo has more value to the question of what, and I think there's no way for us to escape this crucial question of what is the minimal construction that is worthy of human dignity and therefore, protection.

I — for one thing, I agree with Dan about the issue of the embryo but in a strangely different way.  It's not clear — it's becoming increasingly clear that it's not clear what an embryonic stem cell is, what stage of development they would optimally be taken from.  Now it's turned out that via mice there is successful harvesting of embryonic stem cells from the eight-cell stage.  Each stage may have a different property.  I don't think this is just going to be solved by creating stem-breds. 

I think we've sequenced the human genome, are understanding the proteins it produces and now we are entering the age of developmental biology.  From here on out, it's about living organisms and the human living organism.  This means that we can't run away from the issue because as the body charged to deal with the ethical issues of our age, this is the ethical issue of our age.

Now, we don't have to have endless arguments about when an embryo develops moral standing because we have trouble resolving that, but we are going to have to face the issue of at least what is the minimal construction that constitutes a moral entity.  Even reprogramming poses that problem to us.  When I put forward altered nuclear transfer, some professors from Harvard made the comment that you can't define human life on the basis of the absence of one molecule.  Well, I don't agree with them for one thing because that may be the optimal way to do reprogramming, to bring the cell back down to within one molecular type of its human constitution, but the point — the larger point is, we are going to with stem cells, create human parts, apart from the whole of the body.  We're going to have to start defining what is the minimal construction.

Is a brain with one sensory modality worthy of protection?  I mean, that's a science fiction scenario, but we need to start understanding. If we're going to grow human parts apart from their place in the living whole, we need to come to terms with the commodification questions that are involved in growing whole organs, maybe even organ systems in factories or such settings.  We need to face the question that Robby posed, that embryogenesis requires complex micro-environments for its — for the successful differentiation of cells, tissues and organs and the question of whether there are possibilities for growing systems that are actually evolving in terms of development that are still ethical because they don't constitute organismal wholes. 

I just don't see how we can avoid this.  We have to face the questions of human-animal chimerizations, the complex questions that may be summed up with the term the boundaries of humanity.  So I would urge us not to flee from that which is running toward us.  There's a saying in Russia, "When the dog runs at you, whistle."  I think this — just to carry this one step further, I think it means that we need to develop effective tools for collaboration with the scientific community in order to help foster and encourage and even help the public come to accept some of the less easily intuitive positive possibilities of scientific advance and so I'd like to see a way to work in really positive ways with the scientific community and also agree that that will mean that we have to find ways to cooperate in the establishment of some regulations. 

And just to add a couple more points of further projects that hinge off of this, I've been doing quite a bit of international travel in the last couple of years and specifically, I was in Asia this summer.  And I think we have to face into the very profound significance of the global community on these ethical issues.  Part of our mandate originally was to — I can't remember the exact quote but, "Develop cooperative collaborations on an international level", and I don't think we've effectively done that, although we've had some testimony from other countries.  I'm frankly, worried about the significance of a world where arguments are made, "We have to do it here because they're doing it there."  That seems to me not a good argument, but more importantly, there's the omnipresent danger of the — what you might call the outsourcing of unethical practices, if we can't do it here, we'll get it done over there.

Now, obviously, we can't even figure out a way to regulate our own country, we're not going to regulate the world, but I think we need to start working in some measure of initial thoughtfulness as to how we can establish cooperative international collaborations.  And I think, just to hinge on what Ben said, we are increasingly coming to understand, those of us with scientific training, how subtle and fragile biological systems actually are and how little tiny things like any one of the 80,000 industrial chemicals in our environment, artificial chemicals, might be altering something of crucial human significance. 

I'm not saying it's associated with vaccinations or with the — you know, the artificial chemical in your couch or something but some — for some reason there's an increase in autism.  We have to face these questions.  There's this weird issue of phthalates.  What are they doing to the next generation's fertility?  And that would be a good public education thing. 

CHAIRMAN KASS: Do you want to conclude?

DR. HURLBUT:  What?

CHAIRMAN KASS: Do you want to conclude?

CHAIRMAN KASS: Pardon me?

CHAIRMAN KASS: Would you —

DR. HURLBUT:  Wrap it up.

CHAIRMAN KASS: — move to the end.

DR. HURLBUT:  Yeah.  The other thing is I really think we need to face into the — on an international level, the fundamental danger of biotechnology tapping into our most primary desires because I think what's happening to us as a society is we're using biotechnology to short-circuit that which we've always wanted to have in terms of media pleasures, sense of personal ideals of appearance and performance and so forth. 

That creates a very significant situation with the danger of desire magnifying our powers to get what we want, putting a preoccupation in our minds of what naturally is a positive desire but unrestrained with biotechnology becomes a preoccupation or vanity and even a selfishness and with 30,000 kids dying on average every day in the world, it seems to me that we could use biotechnology to become — enhance our own vanity rather than increasing our goodness in the world.

And in that sense, I think we could end up being a society of addicts to short-term goals instead of the comprehensive good.  And finally, I'd like to say that I would hope in the next session we might consider the possibility of maybe having a Volume 2 of our anthology of literature because we really need to extend the positive resources and the affirmation that these bioethical issues are profound issues around which there's been a great deal of thought in human experience and wisdom traditions.

CHAIRMAN KASS: We are roughly at the end of this session.  Let me — I want to introduce a comment that I received from our colleague, Mike Gazzaniga, who couldn't make this meeting on the issue of new topics.  "I continue to believe that a full examination of health practices in America would be a great topic, the short version," and Mike likes the short version although he's introduced this to us before.  "Have Americans been oversold on the need to see a doctor?  Health benefits are bankrupting the country and institutions.  I see this as a problem both from a practical and ethical perspective".  And this ties into the presentation that we had from John Wennberg at a previous meeting on what are all these costly interventions actually getting us.

Since I haven't said anything, indulge me three suggestions of things that I think might be put on the table, and if you don't mind, maybe I will try — once I've read the transcript, try to distill some of the positive suggestions of topics into a kind of memorandum to be circulated to all of you for amendment and addition and make this my gift to the new Chairman for his consideration for our collective consideration.  So I'll try to distill some of this and you'll all have a chance to add and develop it.

But I think I would like to underscore the children's topic.  It was — we touched on it most especially in "Beyond Therapy" on the uses of psychotropic drugs as well as questions of choosing sex of children, questions both of a practical and theoretical sort.  How to get a handle on this, whether one should really talk about the medication of children or the kinds of things that will give rise to the increased incidences of these disorders in children, God knows why.  I think that would be a terribly important subject dealing with children not only because they're vulnerable and don't have advocates, but because they really are our future and we owe it to ourselves to bring our best thinking and ethical reflection to bear on this.

Second, this is only sort of tacitly mentioned really in Rebecca's comment but it was very prominent in yesterday's first discussion, I believe, where we were talking really about sort of the ethical dimensions of the access question, not the political arguments, not the economic arguments and not to put it — Peter observed yesterday that this Council doesn't generally speak a lot in terms of rights.  We tend to speak in terms of good.  And then the question is what does a decent and a good community in fact owe to those of its members who are unable, in fact, to provide for themselves in a way in which they would like if only they could?

And I think the aging topic is only one piece of it.  And one has to find some kind of manageable way to do this, but to do this in a serious way, not simply to become an advocacy group for a particular point of view, but try to really sort out how to think about this in a constructive way.  That would be, I think, an important contribution.

This is the case that all third things today I'm not going to remember.  One was the children, one was this — oh, yes, the third thing has to do with what we'll talk about after the break.  Government regulation is one thing that we have considered, but regulatio, as the report we issued makes perfectly clear, if you understand regulation broadly to include things like tort laws, professional standards, et cetera, so many of the things we talk about enter into the lives of ourselves and our fellow citizens really through the good offices of the medical profession.  And some reflection on the character of the profession, the medical calling and its own professional self-regulation, a topic, I know, very dear to Ed Pellegrino's heart, but one which we've touched on tangentially but have never really taken up, especially in its new context, an age no longer of lore, not to speak of Hippocrates, but where you've got all of these commercial interests and the changing practice, do we have something useful to say about how to shore up, to articulate the medical vocation today in its current circumstances and to offer something useful on that subject I think might be another large thing that cuts across the small topics but one on which under the new leadership, I think we would be very well poised to say something.

Unless somebody has an epiphany or — it needn't be an epiphany.  Frank, you had your hand up before.  Please, take the last comment and then we'll break.

PROF. FUKUYAMA:  Well, this is a suggestion for a new topic.  I think there ought to be some investigation of non-Western ethical systems and what they imply for the future of biomedicine.  There was a KBS team in here that interviewed, I think, Rebecca and me from Korea and they had this question, "Well, what do you think of Dr. Hwang and don't you think that your high ethical standards are holding you back, you Americans, while we Koreans race forward"?

It is — and I think that we ought to — it ought to be looked at not as, you know, let's see Asia as a zone of unethical practice but really from internal to those ethical systems, what implications does it have for the way biomedicine is going to develop in those countries?  One thing — I mean, I can give a seminar on ethics in Asia, but one thing for example is extremely clear, the bright line that the Judeo-Christian tradition draws between human and non-human that invests human beings with dignity simply is not supported by any of the ethical systems in Asia.

Buddism, you know, Taoism and Shinto are polytheistic religions, you know, so that everything is invested with spirituality in a certain sense.  Hinduism and Buddhism, you know, both have doctrines of reincarnation where you can come back as an animal and it has interesting effects because it gives — in those ethical systems non-human creation has a higher moral status and so it's quite interesting. The Japanese primatologists were the first to notice that actually certain classes of macaques actually had culture that could be transmitted.  They're more open to this idea that non-human creatures have, you know, a higher degree of dignity but this idea that, you know, there's this moral status that switches on simply because you're born a human being is really not supported by any of those systems.

And I think you need to — and democracy in Asia is not going to solve this question, you know.  This is a problem in democratic Japan, democratic South Korea.  There's simply different, you know, ways of looking at the world, and since so much of the science is going to come out of that part of the world, I think that we owe it to ourselves to educate ourselves a little bit about what some of these alternative, you know, ways of looking at these issues are. 

CHAIRMAN KASS: Thank you very much.  Seventeen Council members and 18 opinions.  We'll try to sort out some of these comments and give you a memo before you take the Chair. 

We're adjourned.  I don't want to steal too much time from the discussion of the story, so please return promptly in 15 minutes.  I know some colleagues have to leave early.

(A brief recess was taken at 10:12 a.m.)

(On the record at 10:32 a.m.)

SESSION 6: THE MEDICAL VOCATION, THEN AND NOW

CHAIRMAN KASS: Why don't we get started?  a lot of the work that this Council has done has been informed less by the brand of bioethics that takes off from sort of medical ethics where questions of informed consent and things of that sort loom large but we have — and part of what's distinguished what we've done is that we've also been taking up questions that are — if you speak in terms of academic disciplines, belong more to the philosophy of technology and to think about technologies, human meaning and its social implications. 

But as I hinted before the break, several strands of our work really impinge upon the doctor/patient relationship and on the ethical character of the medical vocation.  a growing number of aspects of life have come under the medical umbrella through the expansion of psychiatric diagnosis, enhancement technologies and the treatment of various aspects of behavior,  now with the advent of neuro-imaging techniques to bring these further within the orbit of medicine.  And we have, from time to time, talked about medicalization but not about medicine. 

We, in the regulatory discussions, have looked to the importance of professional self-regulation; however, loose in governing what takes place when health care is given and when the technological innovations reach the public.  And for many of these matters, a medical license and the ability to understand and use medical innovations is an indispensable union card for actually making biotechnology common to human use. 

And finally, as yesterday's discussion made clear, there is a limit to what medicine can do.  Old age, dementia and dying most emphatically expose those limits.  Every doctor's patient eventually dies no matter how good the doctor is.  And the question of a good death came up in the discussion yesterday and a question can be raised as to whether the doctor is primarily to be seen as the moderate day St. George against the eternal dragon or whether he is either a companion or as the other story by Richard Selzer, that we distributed indicates, the doctor might even be something of a priest.

I talked with Dr. Selzer last week, asking permission to use the first story that went in the briefing book and he told me, he's very touched that we have shown such interest in his work but he told me that if I really wanted to read something that he thought was very effective, I should get his latest collection and read the story, "The Atrium," and I'm not sure I can lead a discussion of this dry-eyed.  This is an astonishing story.

While you're collecting your thoughts, let me just make sure everybody's got the main point, and then I'll pose a question.  While eating lunch in the hospital atrium, amply described, this retired physician now turned writer, notices a boy in a wheelchair who is looking at him.  The boy who is 14 years old looks to be 10, all 80 pounds of him.  He's terminally ill with some malignancy. 

He's bald, lips encrusted, attached to intravenous drip.  He is all eyes and ears.  Selzer, self-identified as the doctor and writer but also the narrator of the story, observes quote, "He hasn't the time for shame or restraint, only for honesty."  So the two of them talk.  Tony, the moribund boy, quote, "ill in every way but not ill at ease," assuming a pseudonym, Thomas Foggarty, presses forward his one concern, quote, "What will you do on your last day on earth?"  The doctor/narrator conveys his fantasy about dying, envisioning a former student, now a great surgeon, transporting him to an ancient forest.  He gradually becomes part of the woods. Quote, "The whispering leaves more guessed at than seen," as well as keenly aware of the mystery of life.

The forest sprawls across his mind. Quote, "The night becomes a confusion of stars and fireflies, the here becomes there as he becomes one with the other." His death then is, quote, "a painless transition, that's all, no more."The next morning the boy dies, but not before dictating a letter in which he conveys his gratitude for and understanding of the story told to him earlier by the narrator. And Tony's nurse delivers this to the old man.

One could say that the narrator ex-physician or question mark, physician and writer has, at least in the story narrated, somehow I tried to help prepare this boy for death, though hopes to save him, as he says, by immortalizing him thanks to his gifts as a writer in this story, but I'm interested not so much in the immortalization of the boy but in the deed of Selzer in that conversation.  And I guess the question I would ask is this: Is that a doctorly deed?  Was that a physicianly act, that conversation, or was that — I mean, was that somehow a deed of an old man himself close to the end? 

PROF. CARSON:  I'll break the ice on this one.  First of all, you have to ask yourself, you know, what is a physician? 

CHAIRMAN KASS: Exactly.

PROF. CARSON:  And you know, I personally see a physician as a healer.  Now, if you're going to be a healer, I think you have to be able to encompass the entire organism.  That includes the environment in which that organism lives, everything, in order to bring vitality to that organism.  Now, physicians, at the risk of sounding obnoxious, have more education than anybody in our society.  They take the longest amount of time to be trained and have access to enormous amounts of information, or at least should.

As such, I think it's improper to confine themselves to narrow spectra and I'm constantly talking to medical students about this; how physicians tend to get into their laboratories or their societies or their operating rooms or their clinics and forget about the rest of the world.  And we can sometimes do that with patients as well and look at the organ system that is involved and forget about the entirety of that human being.  So I believe Dr. Selzer has done us an enormous service by showing that there is not only the flesh and the bones, but it is really the mind and the soul that distinguishes us from a piece of meat.

CHAIRMAN KASS: Thank you, Diana.

PROF. SCHAUB:  Yeah, I think I want to quarrel a little bit.  Yeah, I want to quarrel a little bit because it seems to me that the doctor himself says he is not behaving as a doctor in that moment.  Now, it may be that he writes with the intention of getting us to reconfigure and reconceive what a doctor is, but he has the explication.  I mean, this is a very odd structure to this piece.  You know, it looks like a personal essay and then it becomes a kind of short story and then he attaches an explication.  I mean, novelists don't usually attach explications to their own work and they're usually ill-advised to do so.  But since he's done it, he says he is no longer a physician, a man of science.   He has reverted to a more primitive form of being, one who is receptive to certain subtle influences and to intuition.

The doctor in the story knows that he's performing a secret, sacred initiation upon the boy.  He hurls himself into this primitive rite, recklessly forgetting himself, forgetting himself as a doctor and as a writer, until that very moment when he hesitates and says to the boy, "That's all there is.  There isn't any more." And he almost describes that as a kind of failure of nerve at that point — that he doesn't go all the way with this new sort of, you know, doctor as shaman or doctor as priest. 

So — you know, and he also says that, you know, this is a story that flies in the face of science.  So, I mean, it may be that doctoring is — I mean, is something different from science and exists at some kind of intersection of — you know, of science and mystery, or somehow keeps those two things together that's separated at some earlier point in history, but I would be resistant to saying that he simply behaves as a doctor in this moment.

CHAIRMAN KASS: Peter.

PROF. LAWLER: I sort of agree with Diana.  I was very moved by this, but I don't know why — sort of "there's a mystery about the mystery" or something.  And the strange explications, which is mighty strange, he says at the top of page 254, he compares the forest to the atrium, the atrium, the architectural denial of death, and he says in the very first sentence, "It is what a hospice is in contrast to a hospital, the ultimate refuge, a triumphant place where the imagination reigns and one is free of the agony and terror of mortality."

So what frees us from the agony and terror of mortality is a free reigning imagination.  And so that would seem to me that modern technology enhances and definitely the agony and terror of mortality.  So he says at the end of the next paragraph, "The story 'Atrium' flies in the face of science," as Diana says, "it tries to keep the mystery of life from being mowed down by the juggernaut of technology.  So the danger is that modern medical technology will eliminate the mystery of life, making the agony and terror of mortality unbearable."

And then in the next paragraph he says, "This is a sentimental story." So his anti-scientific job seems to be to keep the imagination alive against a scientific project to eliminate human mystery.  And the big question is, which I can't get from the story one way or the other, does this mystery have any real foundation, or is it simply the product of the human imagination which has to be kept alive even though it's unreal?

CHAIRMAN KASS: Let me bother both of you before things get further complicated.  It's true that the explication, which is quite unusual, lays some of that rather starkly, but if you took the story without the explication, you have on page 252 and there's some very nice explanation of the two meanings of atrium in this story — the antechamber to the heart and the — and I think even "heart" is to be understood both literally and metaphorically there, and the antechamber to this place that does battle with death, but seems somehow to deny it.  But then he says, he tried to save him not as a human being, but as a character in the story so that he will not be lost.

That's the comment of Selzer, the story writer.  But then the next paragraph, "I had given him as well one of my dreams to play with.  It was a ruse, a deception, I know.  I, who believe in nothing supernatural, made use of it to prepare this boy for his death."  And here's the line, I think, causes difficulty for what the two of you have been saying.  "It was as if after years of retirement, I had once again put on scrub suit, mask, and cap, and take up my scalpel."  That suggests that the vocation of — that he somehow having retired from medicine, was acting insofar as he was speaking to that boy, in the same way that he was when he was a surgeon taking something, I think tacitly agreeing with Ben's view, of what the medical vocation is when in the operating room with a scalpel.

At certain times with a tail that will ease a person's exit, when one can do no more than that.  What would you say, either Diana or Peter, I mean, to that?

PROF. LAWLER: I don't disagree with that, but let me ask the doctors in the room, is it the job of a physician to prepare — this is not very Socratic in a way, because preparing a young man for death by telling him a lie, a sentimental lie, kind of a pantheistic story, and is kind of a paradox, because the boy before says he's beyond self-pity — he's beyond all that.  He's beyond all the anger and shame and all that, and all that's left in him is honesty.  He wants to honestly face up to death and so it's sort of a paradox that he is prepared for death by being told sort of a sentimental pantheistic tale about death.

And so the big question for me, for which I have no answer is, is there something real behind the tale or is the tale just a tale? 

DR. HURLBUT:  He specifically says in the earlier part of the story, "I see at once that this boy is rare, that I must not falsely console or cajole." And I think the explication works against the notion that he is simply spinning a therapeutically useful ruse. 

CHAIRMAN KASS: Diana, please.

PROF. SCHAUB:  Yeah.  I want to — in a way I think the boy knows more throughout this story than the doctor does and that — and there are moments when the doctor recognizes that as early on when he says, you know, "This boy is passed the need for stories." But yet he does tell him the story because it is his own dream.  I mean, he actually — he's opening himself up at this moment.  He tells him, you know, "This is a dream of mine," and the dream he tells him is, as Peter says, this pantheistic story.  You know, it's transcendentalism, it's Bryant's poem, "Thanatopsies."  I mean, it's — they're very close to that kind of vision, but know what happens when the boy takes that story.  He doesn't just take and accept that story.  He actually gives it back to him in a very different form, and it is transfigured in that. If you look at the letter or just think about the writing of the letter, what the doctor tells him is, you know, "Give yourself up to this vision of a painless transition and merging together with the cosmos and the unity of all life," and the boy takes that and what does he do on his last day, he doesn't just give himself up to that vision.  I mean, we know already he's come down to be in the atrium and to make human contact.  He then goes back up to his room, he's suffering, he knows this is the last day of his death and he writes a letter, a letter that costs him tremendous pain. 

His transition to death is not painless and it's not painless precisely because he reaches back out to the doctor, the writer and the old man.  And I mean, we're told it's painful for him to speak, and yet he dictates this letter.  And the letter says, "It's just as you said it would be," but of course, "It's not as you said it would be because what I did instead was write this letter."  And then he makes some very interesting changes in the dream. 

The doctor's dream ends in darkness.  It ends with the stars and the fireflies and the twinkling of lights in the darkness, but the boy's dream ends with dawn, "a moment ago when the dawn came, it took me by surprise as if it were the first dawn that ever was, rose yellow."  I mean, it's a different dream.  He has transfigured it, I think, because he has brought humanity back into it.  The doctor's dream doesn't have much humanity in it. 

The other thing that I think is very odd and I cannot make sense of is that he says — he says to the doctor, "Your words remind me of Edgar Allen Poe's 'The Raven.'"  Now that is a poem, you know, "never more."  That is a poem of loss and despair and hopelessness and the bird that brings that word is a bird — is a prophet and a bird of evil.  And yet, he compares the doctor's words to that poem.  It's very odd. 

PROF. LAWLER: Yeah, this is what I was thinking, only deeper.  But the — obviously, after saying the doctor's lines are in fact "Poeish," life-denying, right, it's right before he transforms him, so I have to change it.  I have to improve upon it.   And so to make a long story short, it's the doctor who needs the tale, not the patient.

CHAIRMAN KASS: Rebecca.

PROF. SCHAUB:  And the reason that the doctor says, "There's an illness that I need to recover from," I mean, his opening literally illusion is to "The Wasteland," right?  The first quote is from"The Wasteland."

CHAIRMAN KASS: Rebecca.

PROF. DRESSER:  Continuing with what Peter just said, there was a boy and the explication there was a boy, but I — as I was reading through this story, I kept thinking this man is talking to himself.  He's not talking to anyone else.  He's dealing with death.  He's presenting this sort of romanticized version and I was so proud of myself that I was having this insight and then I get to the very end and he says, "Well, yes, there was a boy, it's true, it happened", but then he says, "It takes no great leap of the imagination to conclude that the doctor and the boy, Tony, are one and the same, that Tony is no more or no less than the square root of the doctor."

So I found this story very provocative, which, I guess, shows how good it is, but I was extremely irritated by it.  As I was reading this death story, I thought, this is like Disney's version, or sort of some organic farmer's version of death, and it just seemed way too pleasant and Hallmark-cardish and I thought this guy is talking to himself, but here — this man is a perceptive surgeon.  He's seen the reality, he's seen the blood and guts.  What is going on here? 

And I don't know what's going on here.  I was — as I was reading this, I thought about Sherwin Nuland's book, "How We Die," how brutally honest that book is and he's another Yale surgeon, right?  And I must say, I gravitate more toward his view of death, so maybe that's one reason this irritated me, but I'd be really interested in hearing what other people might think is going on in his mind about preparing for death and in some ways stepping away from the doctor's role and talking to himself, but as you say, he talks about becoming the doctor again.  So I'm confused.

CHAIRMAN KASS: Yeah, but why — this is in a way the — let me add a line to this which I think is probably — well, it's one of the most poignant lines, this is very early, where he gives you the reasons why he goes to the atrium and there are increasing — he starts with the most superficial reasons, he can't see very well, et cetera.  The last thing is to say, "Perhaps I go there to be in the vicinity of the sick and their 'next of kin.'"  Now "next of kin" is a term that's usually reserved for people who are in grief, right?

So that the images, the sick, i.e., the dying and near dead and to be imagined as dead and their next of kin.  "It is with the sick that I feel a sense of belonging.  The sick are my kind."  Now that raises the question: Is that a doctor speaking?  Is that just an old sick man speaking or is it a person who perhaps by virtue of having been a doctor, and not only because he's old, somehow understands more deeply than most of us do that the sick are always "my kind"?  That's puzzling to me.

Can a doctor honestly say "the sick are my kind," or is that the voice of a certain kind of human being with a certain exquisite sensibility or something like that who would see that?  And so your attempt to somehow separate the man and the doctor or the boy and the old man, I think, is very nice to begin with, but the question is, do the fears of the young made more poignant in this particular story and especially the fears of the old, are they not somehow the universal sort of human concerns which doctors, to be doctors indeed, should not have extirpated from them, but somehow could be deepened and enriched?

And I've been away from, you know, medicine too long, and I would really welcome — Ben has already weighed in — but it seems to me on this particular question "the sick are my kind," we do battle with their sickness as if we want them — they are "our kind" especially when they're made well, but the question is whether that kind of human empathy is somehow essential to being a physician and never mind whether the story is true.  We can worry about that, but the boy, even how he's transformed the story, understands the doctor gave him a gift.

He's made something more of the gift, perhaps, than the doctor gave him. And the doctor now has to mourn a life that he knew but briefly and came to love, but the boy recognizes it was a gift and the doctor describes it as a doctorly act and I don't know whether it is or not.  Gil.

PROF. MEILAENDER:  My initial reaction to your question about "is it a doctorly deed or not" was sort of a simple one in the sense that — and it may get me into the separation of the man and the doctor that you're not sure you want to grant.  That one wouldn't have had to be a doctor to do what he did.  It doesn't seem to me that it's in any way essential to that.  Doctors might have more opportunities to do it than some other people, but a person with a certain kind of understanding and insight could do that, so there's that sense in which it's not a doctorly deed or not only a doctorly deed.  That much seemed clear to me.

Now, I took it, though, that what you were interested in though, maybe actually, I see now that you're interested in more than just this, but at least I initially took it that you were interested in thinking about whether we would somehow deform our understanding of doctoring if we thought that it didn't have to include this.  That one could do doctorly deeds that were entirely, as it were, that entirely bracketed all of this kind of consideration and still sort of be satisfactorily acting as a doctor.

And I mean, I do think that the story suggests — for me anyway— a kind of "no answer" to that question.  I'm not actually crazy about the story he tells the boy, but in terms of the larger story, I think it does suggest that some — a notion of the medical profession that thought of it well more as technical and technique, and not alert to these larger dimensions, would be an inadequate notion, right where Ben started in a certain way.

But then the third thing I thought about, which does bring me back to where I started with not wanting to see this in any special sense as a doctorly deed, though certainly a doctorly deed should also be included, is that at the end, it's the boy who's prepared the doctor for his death and, indeed, their initial encounter is almost initiated by the boy who is looking at him with that glacial intelligence or whatever the phrase is there.  So, "who serves whom here" is a very complicated question or even "who doctors whom" is a complicated question, and that again, suggests to me that while one lesson you might take out of it is that you can't doctor someone without being alert to all these things.

There's a larger sense in which "to be human" is a way to doctor other people, not in technical ways but in helping them to deal with the most fundamental aspects of life, and it doesn't seem to me that that's confined to the medical profession.         

PROF. SCHAUB:  Can I ask you a question?

CHAIRMAN KASS: Gil?

PROF. SCHAUB:  Leon?

CHAIRMAN KASS: Please.

PROF. SCHAUB:  You're putting a lot of weight on the passage where he says that he becomes a doctor in that moment to prepare him for death, but the kind of doctoring he speaks of is surgery, which again, seems to me odd.  I mean, he puts — he said, "The scrub suit, the mask, the cap and had taken up my scalpel."  I mean, he's going to excise something from this boy or perform an exorcism of some kind.  Why surgery and —

CHAIRMAN KASS: What's being cut out?

PROF. SCHAUB:  — for the conception — yeah, that's what I mean, but for the conception of doctoring that you're speaking of, it would not seem to me that surgery would be the best model of it.  And I think you guys have had some previous discussion of the Hippocratic Oath.  I wasn't here for that, but was I right in reading a line there where he says, you know, "In the Hippocratic Oath, you know, I won't take up my knife.  I leave that to those who do that," as if — do that other thing, as if surgery is something different from [doctoring].

DR. FOSTER:  Well, I don't think the surgery has anything to do with this story.  He was a surgeon, you know, and there are surgeons and are also physicians and some — you know, so I didn't read into that anything at all about it.  I do — I'd comment in a little different way than I think has come here.  In terms of whether it is a necessity for a physician to have this sort of sympathy, I would say that the one absolute requirement for a physician who is ethical is competence.  I don't care how big his heart is or her heart is, if they're incompetent, they're unethical.  So the first and decisive ethical requirement for a physician is to be competent. 

Now, as Osler, we've been talking about him, said, he added a second [rquirement].  He said that the second requirement was compassion so that the complete physician should be both competent and compassionate in a variety of ways as Ben was saying.  But if you had to sacrifice one, you would not sacrifice competent, you would sacrifice compassion.  I know gifted surgeons who are not very sympathetic at all, but they're who you might want to see if you had something wrong.

Now, my own reading of this story is that he really is talking about a sort of — in my view, sort of a universal question — What does it mean to die?  We're bracketed with non-being.  We were non-being before we were born and we're non-being when we die or might be.  People have always had hopes that we do not cease to be.  I mean, it might be a cycling reincarnation as some sort of an eternity that was going on, or it might be another view of life after death, but everybody has to deal with this.  And very often, I almost would say most of the time, even if never articulated, there's an anxiety and a fear, because even if you read near death visions and so forth, none of us have ever been through that before.

I've never been close to dying.  I mean, I might drop dead while I'm talking here, but I've not had to deal specifically with that fear, but I've seen that many, many times at the death bed, the anxiety and it doesn't — I'll tell you a simple story.  Robby said I'm always telling Texas stories, but this boy was incredibly gifted.  He knows literature, you know, he cites poems and so forth, incredibly gifted 14-year old. 

I'll tell you about another boy.  His name was Edgar Lee, African American.  I took care of him.  I was the attending physician at Parkland Hospital.  He had a lymphoma.  It was a hard time when we had to send him home and I had to call his mother and she wouldn't take him at first.  And I had to explain to her, it wasn't that she didn't want him, it was she didn't know how to take care of him.  He lived on Ewing Street in the most impoverished part of Dallas.  I go to a downtown Presbyterian Church and I teach there, and to my astonishment one day Edgar Lee showed up.  He had walked with his lymphoma.  He was not far from death. 

He had walked six miles to the First Presbyterian Church from Ewing Street.  He had found out that I was — that that's where I was on Sunday, and he came up to the class.  And then he had an IQ that could have been no higher than 70.  That might be generous to give him that, but I was his doctor and he heard I went to church and so he came.  And he eventually asked to join the church, which he did and the — I was teaching high school kids and we would go over to Ewing Street. 

He didn't have sheets on his bed.  There were just newspapers and we took food.  And I wanted the middle class kids that I was teaching to see what this was about.  But what he came for was, he knew he was dying and he was looking for hope.  He was looking for hope and most people have these sorts of fears, and they may not be articulated at all.  Well, you couldn't have a conversation like this story was with Edgar Lee.  I mean, you could love him a little bit and his family asked us to — asked me to speak at his service and the pall bearers were the all Caucasian members of the class that carried the thing there and he, in some sense, found comfort in the idea that — which would be a Christian idea, that life does not cease at the end of — so I see this story really as the universal story cast in maybe almost in a stoic fashion.  You know, there's no hope for anything, but let me just be buried in the beautiful forest and so forth and that would be what the hope is, but I think it was more about — and I have met Dr. Selzer and heard him, talked to him a little bit about some of these things before.  I think he was really writing about the universal anxiety about non-being, about finitude and I think physicians have to — even if they, themselves, have no hope or no faith or anything, they have to be willing to deal with this.

And somebody asked the question, you have to say, "Well, I wish I knew the answer to that.  I don't know the answer to that," and so forth, but the physician can always be a companion on the way.  I spoke at the death of a Professor of Emeritus who you probably saw in the New York Times here and so forth, and the first thing I said, I mentioned this to Leon, at the service, we talked about good death, I said, "Death is always serious and it's very often somber, but there is such a thing as a good death and Morris Ziff had a good death for two reasons.  There was a respite before he died where he got to talk to the family and so forth, and he died quickly from a heart attack, not from his heart failure and being on an intubator and so forth and so on, and he always wanted to die easy, which he did.  And secondly, he was not alone when he died.  His family was there and I happened to be in the ICU when he died."  So my view is that this is different from what — maybe not different but I think this is what he's addressing is the sort of universal boundary of non-being that — and do you know what, I suspect that I'll probably be, if I have time to think about it, I'll probably be a little scared too. 

I'm trying to — gray matter, there was a famous Communist atheist and I've forgotten his name, Bloch, Bloch was his name, and he was the one who coined the phrase "The great perhaps."  He was a vibrant atheist, but very thoughtful.  And as he contemplated finitude, he talked about the great perhaps.  In fact, one of his students, when he was dying said, "I'm going to look for the great perhaps," you know.  Well, I think that's what this is about.  And this very long answer to your question is, I think the very best physicians — I've already said that you can be an excellent physician without compassion and not the ability to do like Dr. Selzer could or many — but the best physicians even when their black bag is empty, are still physicians there.  You know, even when the black bag is empty, they have a role as physician.

CHAIRMAN KASS: Could I just draw you out a little more, Dan?  I mean, you — just very briefly.

DR. FOSTER:  I'm feeling sorry for the Council having to —

CHAIRMAN KASS: No, no.

DR. FOSTER:  I've talked more at this Council than any meeting I've ever been to.  Yeah, go ahead, what do you want to challenge or —

CHAIRMAN KASS: No, no, no.  It's — it really is — the very last thing that you said, and I think your diagnosis of what's being addressed and maybe even with the psychic equivalent of the scalpel, Diana, is this kind of terror or doubt.  And to extirpate that kind of fear by this kind of speech, or extirpate  might be too strong and maybe that's the surgeon's view of what he's trying to do, but is it in your experience common that one explicitly somehow speaks to that fear or is it sufficient to be somehow present and somehow tacitly address it, but not explicitly?  I mean, does — let me put it more generally: Do the best doctors help their patients to die?

DR. FOSTER:  Well, I don't know whether you can — I guess the answer is, yes, at the very least by presence, which is there.  I came one morning on a Saturday morning, I often times start at the top of the hospital and go down to the emergency room, just to see people that you run into even if I'm not on wards, and I came to the cardiac intensive care unit and one of our residents, Cathy Dotson was sitting there weeping, I'm talking about young people now, not people like Paul and me, who have been around.  And I said, "Cathy, what's wrong?"  And she had a young woman with a postpartum cardio-myopathy.  She was dying in congestive heart failure.  It's a six-month old baby and she had — this is before the 80-hour rule that you can't work more than 80 hours a week, and she had — Cathy had stayed not only her night before in the unit but this night also. 

And what she did was she sat all night with this 22 — I think she was 22-year old Hispanic woman, holding her hand all night long and there wasn't a thing in the world that could be done for this cardio myopathy except a heart transplant and there wasn't any way that she was going to get it.  And I said to her as she was pouring the tears out, I said, "Cathy, I want to ask you one question."  And she looked up to me, and I said, "Did it make a difference that you were here?"  That's a question that — and immediately her tears began to drop because she knew that it had made a difference.  The young woman died within the hour, that she was there  to hold — she didn't offer anything medically but she was there as a companion, so at the very least.

Now some times questions are articulated that are specific, you know, that one may answer you know, but at least there is the presence, and if somebody invites you to come — let's say if somebody has a — that somebody has a religious faith or something.  If they invite a dialogue there, I think that's perfectly acceptable to do.  Never forced, I mean, it's not — one doesn't come in and force one's views on the patient, but invited one may say, "This is what I hope or this is what I believe". 

Nobody ever gets mad if they say, "This is what I believe".  What they get mad at is if you say, "This is what you have to believe", you see.  That's the difference.  That's a long answer, but I think the one thing that Selzer did, if he's writing about himself and the boy, whether the boy is real or imagined, is that there was a human connection there that was a sort of however it ended up, that he was connected to this boy in a way that conveyed to the boy a sort of love.

CHAIRMAN KASS: Thank you very much.  Bill?

DR. HURLBUT:  I think this essay addresses the question that we were trying to ask yesterday about the mysterious question about whether there is  such a thing as a good aging and a good death and how technology plays into that, and how that relates in turn to a more primary quality in human nature and human culture that is in a way being swamped out by our advancing technology and our interventions against nature.  It basically asks the question — and I completely agree with what Dan just said — asks the question of the universal problem of the reality of natural death. 

To me the interesting — I think you mentioned already here beyond the comment that the — what's this phrase exactly, the boy is the square root of the man or how does that go?  It's interesting just before that he says, "It's well-known that mathematicians reach the peak of their genius in their teens", as though he's saying the square root being the solution to a mathematical problem that maybe something beneath our — what he calls the professional pose or the unnaturalness of the hospital is part of our solution that as a physician, we have to be careful to sustain our receptivity to the subtle influences of the intuitive, what he refers to as the secret initiation of primitive right that he's leading the boy through.

And I think there's a comment in here about technology.  I mean, it's a very prominent thing he says.  "The story, Atrium flies in the face of science.  It tries to keep the mystery of life from being mowed down by the juggernaut of technology".  And I think he's saying that the physician in the modern world anyway, is strangely participating in that.

CHAIRMAN KASS: Diana again, please.

PROF. SCHAUB:  Yeah, I want to — it's sort of on this question of technology.  I want to say something on behalf of the nurse, because the doctor, who is the author of this story, gives her a rather hard time.  He sees her as characteristic of the coldness and the falseness of the modern hospital, that she's cheerful and professional and that there's something false and untrue about that approach to death.  And he contrasts the approach to death in the hospital with the approach in the hospice.  I mean, he says this in the explication, that in a way what he offered the boy, this vision of death, is something that one would find in a hospice rather than something one would find in a hospital where one would be denying death and confronting death and staving off death. 

But it turns out that this nurse is the one who spends the afternoon with him taking the dictation of the letter and promises to deliver the letter and does so.  So that you know, I mean, in a way what I'm suggesting that the doctor in the story is not the doctor who writes the story.  I mean, that  even though this is autobiographical and he uses his own name, he is conveying certain things to us that go against what the stance of the doctor himself in the story.  I also think there are things you could — he's trying to do something with technology in that image of the fountain also because he tells us that the fountain, which is the heart of the heart, right, it's the heart of this atrium, that the fountain appears to be water in motion, like matter in motion, right?  This is sort of a modern conception of the world, just a kind of chaos, matter in motion, these overlapping circles. 

But then we learned that actually the substrate of the fountain there is actually a foundation and a structure.  There is something solid.  There is this pipe with the tunnels or what do you — the funnels branching off from it.  But then that's odd too, because that suggests a kind of mechanism, right, it's a recirculating pump.  So you have the — and that what presents itself as matter in motion is also maybe something mysterious.  I mean, that's what's beautiful.  And the mechanistic trunk is not very beautiful.

So it seems to me he's doing all kinds of things with that image and flipping it and playing with it to try to figure out this question about technology and modernity and mystery.

CHAIRMAN KASS: Paul, have you got something here, doctorly speaking?

DR. McHUGH:  I was wondering when you'd get around to asking me and preternaturally quiet.  I was very — I'm very interested in hearing what you all read into this or read from this because you read this as patients.  I think Rebecca is correct that this is a doctor himself, but I think the reader is, as they often do with doctor stories, they read them as patients and wonder and think about whether they would find in this doctoring interaction comfort or not. 

And so I,too, kind of sense doctoring as  Dan says, is first competence and then compassion, because compassion having an empathetic thing, I began reading this as, first of all, would I do this to a patient, would I speak this way to a patient and would I, on the other hand, get anything from this?  And on those reflections, I absolutely agree that this is a book that tries to speak about how the mysteries of life have been mowed down by the juggernaut of technology. 

Well, in point of fact, this guy's been mowed down by the technology — the juggernaut of pathology in his own spiritual view of this.  He has reverted to a pantheistic position and the best he can say for his last day on earth is he's going to merge with the moss.  Well, you know, first of all, I'd never say a thing like that to patients, never.  I talk to a lot of patients at the end of their lives in various kinds of ways, just like Dan does, and what we talk about is not, "Gee, we're going to slip off into the sounds of the crickets".  We talk about where we came from and who we are and who mattered and how their love for us made it possible for us to flourish and whether we did as good a job as they'd hoped for us or not. And in that way bring them in some way into contact with one another.  The fact that we are people together and somebody at one level cared for us and loved us and in that way, made it possible for us to go forward.

Now, this is only a 14-year old little fellow and he's a bright little fellow, but he's also a suffering fellow and he can only suffer at that level.  And I would have — you know, I would have thought that it was even more accessible to that.  This — let's get it straight, I hated this story and this has its reverberations in Tom Quill and Jack Kevorkian.  It's one day with Richard, the next day with Jack, and why not get to the moss quickly and the like.

No sense of who lives with us, who has lived with us, who has made us what we are and whether there is some form of love itself that lives and shares with us our own suffering.  There is — this is the result of technology really at the level of disparate and fortunately, there are much better things to say to people and one would.

The real question is also whether a doctor — I'm going on, too.  Dan and I both do this.  We go on.

CHAIRMAN KASS: This is terrific.

DR. McHUGH:  Go on and on. 

CHAIRMAN KASS: Is there more to this, please go on.

DR. McHUGH:  Well, no, only in the sense of gee, would you charge in there?  You know, this is a kid you're meeting and he wants to know what are you going to do on your last day and you're a doctor and especially if you're a doctor that thinks anything about the psychological and spiritual nature of a human being, do you plow in and tell him this or — are you not going a little too far?  Where is the inhibition and the sort of sense of gee, what we all mean to" — now, the story is told that by doing this, he did the kid some good and I'm always of the opinion that, gee, I never know what — it's always interesting what people say, did them good.  A great story I like to tell about; after I had been two or three years at Mass General as a neurology resident, I was the Chief Resident and a guy comes in to see me looking very nice and he said, "I want to talk with Dr. McHugh", and I — he said, "Listen, you did me a world of good.  Do you remember me?"  And I said, "Gee, I don't".  And he said, "Well, you saw me two years ago in the emergency room and I was there with this burning in my feet and I was in pain and you looked me over very carefully.  And it was in the middle of the night and you took a good, you know, history and you found out that I had been drinking and drinking a lot", and of course, he had alcoholic polyneuritis, "And by the way, after we were through you told me, you know, stop drinking, and I did, and two years later I'm a lot better and you know, it's very nice".

So you never know what — he was kind of walking out the door and waved back and say, "Lay off the booze", and somehow or another the relationship made it possible for something good to happen and I was, you know, astonished that this happened, because I've spent hours with people telling them about the evils of drink and telling them to do this and do that and had no effect. 

And so you never know and so maybe this guy does him some good, but this isn't my way and but  is it anybody else's?

CHAIRMAN KASS: Frank is holding back but Frank reminded us in the last session that there are large parts of the world where this isn't somehow an aversion to some foolishness caused by the march of technology, but is an age old wisdom about the interconnection of nature and the unity of all things and an open minded person would at least entertain the possibility that what two billion people believe can't be entirely wrong and is therefore, worthy of reflection.  That would be the general point to you, Paul. 

But the boy's in isolation.  As far as we know, there is no family and the exquisite understanding is that, "If I tell you my name" — I shouldn't bungle this.  "Now we are strangers more or less anonymous.  By giving you my name, I become somebody who can reach out to grab you to capture.  You could even want to grab me". 

Now the boy is very wise, obviously, about what it means, in fact, to nominate yourself in this personal way and at a certain moment in the story beautifully described, he allows himself to be grabbed by this hand.  This is a boy who's in isolation and one can only imagine is preoccupied with this end and somehow this is a comforting tale to this boy or it enables something to happen.  I like — I mean, I've always known that Diana is a spectacular reader but I've learned two or three wonderful things really that just simply passed me by in the way of the boy transforms the dream and in fact, makes a human connection out and therefore, leaves the doctor grieving for the loss of his connection just for and in need of healing himself.  I think that's quite right.

But I'm not sure that — I mean, the doctor did this boy — deliberately did this boy a good turn and by speaking to him in a way that would allay this terror, not by somehow merging with the moss.  That's the characterature but by making seem somehow less terrible the — making it seem slightly less absolute the transition between being and not being, so that something could calm down and he's capable somehow of making something of these last moments and indeed to reach out in response and maybe give back a gift greater than he received. 

So and we can quarrel with the theology here.  I knew as soon as I distributed this story that this kind of pantheistic teaching would elicit a kind of dissent.  I wasn't prepared for Peter's attack on  noble lies, at least worries about whether people who want the truth ought to be given a tale which is edifying or at least edifying for them but humanly speaking this story is a successful act of healing, at least as I read it. 

And maybe the doctor had enough intuition to see that a speech about all the people who had done him a lot of good or what you say about the nurse is right but when she says, "We'll have a transfusion", we, this boy is too smart to be gulled by that and it doesn't do him a good turn.  There are certain other people for whom that would be fine but you've got to know the individuals here.  And maybe this doctor intuits what this particular human being, how he needs to be spoken to and has found a way to penetrate that terror in a way that can be accepted.  That's more than compassion.  It's a different kind of competence if you will, a competence to know — to recognize who's in front of you and how to speak to them to give the kind of comfort when the black bag is empty but the rest of the doctor's augmentariam is not.  Frank?

PROF. FUKUYAMA:  Well, I don't know.  I don't see why you keep insisting that this is a story about doctors and their appropriate role because it seems to me that what this doctor did is something that any human being could have done.  To me what was interesting was not that this told you something about the specialized question of what are the duties of a doctor to a patient, but it actually reminded me that in a certain way, doctors are privileged because they see people in the situation of that boy. 

The rest of us are so insulated from death and dependency and that kind of need that we never think about it.  And I've always thought that it's kind of a privilege of not just doctors but care givers generally, you know, that they have stories like the one, you know, Dan told or Paul that, you know, that the rest of us just don't have access to and it gives you, I think a very different view of what human life is like because you know, there's this Allistair McIntyre's book "Dependent Rational Animals", he begins it by saying that especially Americans have this view of, you know, the kind of self-sufficient independent, you know, individual is kind of an ideal type and that's what we look up to, but you know, the reality of so much human life is that in fact, we're deeply dependent and needy and so forth. 

And so it's always seemed to me a kind of privilege that doctors had, you know, had access to this sort of, you know, insights about what human life is like.  So that's what I thought was what I liked about the story. 

CHAIRMAN KASS: Let me just respond.  You picked up also on what Gil said.  I didn't mean to say that this was uniquely an office that a physician could render.  The question was whether it could be — whether it should be seen as an integral part.  I mean, I don't know any doctor.  I don't know any doctor who would — other than this one, who would be inclined to say, "The sick are my kind". 

And the question is whether that's a failure of the way in which we've somehow instructed physicians to somehow understand that as the basis of the bond because, look, what we did yesterday, I mean, you're talking about when you're dealing with the patients with dementia and the distinction between those who are looking for pharmacological means and those who are talking about standing with the patient and keeping company.  And so much of the success of our medicine really has been to arm the doctor to be a better fighter against the illnesses.  The question is whether it falls to others to do what has to be done when the fight is lost.  It's a very strange thing, a very strange thing that doctors and one should probably more likely say nurses, since there are more there than the doctors are, preside over the entrance or the exit from life.   That's a very odd thing.  I don't deplore it.  I'm not saying we should, you know, have births at home and nobody should die in hospitals though if you could avoid it humanly speaking, better, but it's very often too much to impose upon anybody to give that kind of care under those conditions. 

But it's odd.  I mean, the priests attend, the minister attends these ultimate moments rather than the person of medicine though at one time and Dr. Pellegrino can comment more deeply than I can by a lot, the distinction between the doctor and the priest was much, much less and the questions of what medicine healed were much, much richer.  And so part of the question is, if we're worried about the medicalization of so much of life but we have a shrunken view of what the medical vocation is and can embrace, then I think we've got even more problems than simply the technologies themselves, especially if the presiders over the uses of these technologies and the people who are in charge of those places where we are born, get sick and die, are people who do not regard this particular thing as part of their vocation, that that belongs to people who have been rendered invisible or in some ways less necessary because the doctors can do more about death or more of life than anybody else can and therefore, their status in relation to these things naturally rises.  That was the point.

This is an office of a human being but the question is, is that extra and added to the medical vocation or is it somehow intrinsic and do we have to worry about the character of the medical vocation increasing.  I think that came out all right.  I mean, that was my motive in putting this before us.  Gil and I won't keep us long because we've got public comment.  Four people want to speak and then we'll close it off.  Gil, Paul, Bill and Peter.

PROF. MEILAENDER:  Yeah, this is really just to repeat something I said earlier, but without denying at all the truth of what you've just said or that it's a salutary lesson to draw from this, whatever we call this story or whatever, I just want to repeat that I'm not — as a reading of the story, just as a reading of the story, I'm still not sure that the man ministers to the boy rather than the boy to the man in terms of who takes the initiative in this encounter, who's diagnosing whose problem, and who finally helps whom to face death.

Just as a reading of the story, however, the lesson you draw from it, I'm not quite persuaded yet that that's the first thing the story is about.

CHAIRMAN KASS: a point taken and embraced.  I agree with that comment.  Who was next?  It was Paul.

DR. McHUGH:  Well, as I say, I'm very interested in what you all are saying about this.  I want to draw another analogy though to our Council and its stories, in particularly to your relationship to your last comment about how technology has deprived us of certain kinds of things and I, of course, believe that technology has deprived this person of any — this doctor of any appreciation of the fullness of human love and affection and the deep side of that. 

We began, after all, reading the "Birth Mark" and the "Birth Mark" had as its theme the person was employing technology and forgot love.  And when he forgot love, death resulted.  Here is a doctor now long afterwards with technology at his beck and call, and the best he can do is not to summon up anything other than what he says is the unexpressed love between him and the patient but cannot speak about anything other than this strange falling into darkness, an almost Homeric vision of the darkness came over him and that was it. 

And that's — every reader is idiosyncratic as he reads and this is what I take.  I take it that this is Hawthorne demonstrating to us just where we're going.

CHAIRMAN KASS: Bill.

DR. HURLBUT:  That, I like a lot because the "Birth Mark", the overarching theme of the "Birth Mark" was an intervention against imperfection and then the loss that comes with that.  I think it's plain in this essay, this little story that he's decrying a falseness of the fountain, that it's — he said, "It's an attempt to disguise the true nature and purpose of the hospital.  It's a denial of death in mechanical terms — in architectural terms", rather.  And what strikes me about this and the way it connects with our first — the way we opened our Council three and a half years ago, is how we need to be so careful now as we go forward with our new powers and understanding of the mechanism of nature that we don't mechanize reality to the place where we extract and we distill out the — or we lose the sense of the meaning and myth and story that reconstitutes and preserves this boy's existence.  It's the telling of the story that makes that personal being sustain.

The hospital and the whole bargain with medicine is basically — it's a bargain.  We seek a remedy for health against the entropy of natural death and disease but we take a position against the natural in doing so.  We emphasize intervention and rescue and we create a kind of discontinuity and almost a kind of desperation and I spend many times sitting in those hospital — many hours sitting in those hospital cafeteria types.  They always try to make them look a little nicer.  They're very eerie places, like the — what do you call the flesh of that tree that cadaverous flesh.  They're like that.

The point is that medicine so easily could slip over into an anti-natural enterprise that from which we then lose our connection with reality and I think he's actually decrying the fact that medicine and doctors often do not feel like the sick or their kind.  I think he's saying that — I think this is a warning about modern medicine actually in here and its inability and its strong antagonism towards the natural, it's inability to sustain that longer overarching sense of the integrated wisdom of living in a world where the sirens never cease.

CHAIRMAN KASS: Thank you.  Peter, take the last comment, please.

PROF. LAWLER: Very quickly.  I think what's wrong with your interpretation, frankly, to agree with Gil is, there's no evidence that the boy is filled with any terror that needs to be remedied, right?

CHAIRMAN KASS: Say that again.

PROF. LAWLER: The boy is really not filled with any terror that needs to be remedied.  He seems to be facing up to death honestly.  And not only that, the doctor is sort of an odd man, right?   He spends all day writing by himself.  Then when he goes to lunch, he sits in an atrium all by himself and its architectural denial of death.  And the story says the only thing that gives the atrium any dignity or taste is the boy.  And then it contrasts the boy's — the boy's life with the forest, which is devoid of anything human, anything human which is good and anything human which is bad.  And so this man — I mean, to make a long story short which in filmland, it's almost like this man invents an imaginary friend to love.  I will stop.

CHAIRMAN KASS: Diana is entitled.  Please.

PROF. SCHAUB:  One more point about the text and the fountain.  I mean, you begin with this deadly fountain but at the end — I mean, this is a way to say something in defense of the doctor, I think there is a real transformation of him.  He says that by the end, the boy has become like a fountain in his mind.  I mean, yes, maybe an imaginary friend but still it's a new friend that transforms him and he actually does now change his own vision.  It's not that forest merging with the moss and the bark.  I mean, the last words he says in the story proper before the explication is that, "Sometimes I speak to him.  With your eyes I tell him lift this tree up, up until it touches the sky so that you can climb it all the way to heaven".  I mean, there was no vision of heaven in that first dream and now there is. 

I mean, he says, you know, "I had a failure of nerve before.  I would not go past that point of the moment of death," but now he is actually envisioning that so and it does seem to be triggered by his love for the boy.

PROF. LAWLER: Yeah, that's exactly right, to intervene.  So Paul, I agree with you 98 percent of the time but in the final analysis, this story is about the redemptive power of love.  So the pantheistic thing is not the bottom line.

CHAIRMAN KASS: Astonishing.  Really, thank you very much for this discussion.  I think there's — there would be enough to start with at least to continue reflections on the limitations of the character of the medical vocation under these particular circumstances should we be so inclined.

SESSION 7: PUBLIC COMMENTS

We have two people who have asked to make public comment and if the Council members would be willing to sit without a break, we can have the comments and then leave.  Our two guests are first Michael Houser and the Susan Poland.  I remind the guests that you should keep your comments to five minutes or less.  Welcome,and Mr. Houser, if you'd please come to the microphone.

MR. HOUSER:  I want to read this, do my best.  First off, thank you, Dr. Kass and thank you for the Council.  And second, I'd like to note something from a bio that I've read of Dr. Pellegrino.  It's a quote which I'd like to paraphrase.  Something happened to him as a young man.  "Substantiate your point.  Whatever you freely assert, I freely deny by the same loose argument," is what I'd like to note. 

Two Protestant boys, my brother and myself, got the same lecture or sermon from their father.  His sermon was very short.  "Know whereof you speak."  He never told you where the quote was from.  It was yours to find.  But basically eventually I found it and it was from Paul in his Mars Hill apologetic.  I leave it at that.

I'm not here to lecture, debate, so I'm going to just be brief and I'm going to try and cover a couple points.  My purpose in coming here is two-fold; to observe the Council in person versus read a flat transcript; you're quite impressive, all of you.  And the second thing is to state that an assumption of surplus embryos through IVF is not a given.  I'd like to cite John Biggers, Dr. John Biggers, "When to avoid creating surplus human embryos." [Human Reproduction 2004 November 19 (11): 2457-9]

And I've given that abstract to Diane. 

Related to this point, I'd like to say something on informed consent and I'd like to say it as a dual citizen, Ireland and the United States, and that many things that are said here really effect the world. So I'd just like to remind the Irish Medical Council that their ethics guidelines are clear.  a physician must state alternatives as well as benefits and risks of a procedure.  Informed consent is not just a signature. 

And lastly on what you've been discussing and more or less getting with the program as it sits now, I'd like to not perhaps comment on Richard Selzer but I'd like to note something on page 247.  He says, "What would you do on the last day of your life?"  Well, we're all going to get there.  Unfortunately, my father passed away on this very evening six years ago.  And I'd like to read a poem that my parents liked and I think it comes from the perspective of people enjoying life in Tucson and so I'll just get to it.  It's called a Pueblo Indian Blessing. 

"From seeds we sprout and blossom, we give forth our fruit then go onto life end.  That's how it is."  I should say that's how it's always been.  "Endure the storms, thrive in the sun, breathe deeply and be grateful for your life". 

I can't do better than that, so I want to thank everybody and hopefully, I've said something important.

CHAIRMAN KASS: Thank you very much, Mr. Houser.  Appreciate that, thank you very much.  Susan Poland?  Welcome back, nice to see you again. 

MS. POLAND:  Hello.  I'd like to congratulate both of you, Dr. Kass on a job well done and Dr. Pellegrino on assuming the mantel.  I'd like to make two comments generally, one on bioethics and one on public — going out to the public today. 

With bioethics, I think this Council has done an outstanding job on putting bioethics, on enriching it by putting it in context both with the literature and with using the national bodies that you had people come and testify.  I had not seen that in any other group.  That being said, recently in the June issue of the Kennedy Institute of Ethics Journal I wrote a short piece on bioethics, biolaw and western legal heritage which actually shook my faith in bioethics looking at what was happening in Europe and looking at ours.  And to that extent, I will agree that you should look at non-Western systems, particularly China, which has Confucian values with the Communist system and how that interacts.

And then still under bioethics, I recall Francis Collins at a meeting that we went to talking about why is the National Human Genome Research Institute the only one that's looking at ethical, legal and social issues?  Of course, everyone knows it's because of James Watson putting that in.  This Council, because it is national, is in a unique position with the Executive Branch, to recommend to the President that all agencies and departments look at the ethical and other issues of their department, particularly in light of the fact that with us working at Georgetown with the National Library of Medicine Grant, we're confined to medicine and medical ethics and such.  We really don't have the funding nor the mandate to look at genetically modified food or anything else along with that, the animal research and stuff.  And so I recommend to the Council that you consider doing that. 

My second area has to do with the public of which I've been one here in many of these meetings and I will congratulate you because you probably situate your meetings the best for public transportation.  Given that they're in Washington, that really helps but usually that's what you do maybe unconsciously.  And when you do want to look at reaching out to the public, I want you to consider whether you want public presence or public participation or both.  One of the positions that I fill is with Case Western Reserve University because they are now a Center for Excellence in Ethics and Research and under them, they pay for some of my time to go around to different meetings. 

So some of the meetings in the last year that I've been going to do very well with reaching out to the public, I think, and things that you could consider in modifying here.  One is the Secretary's Advisory Council on Genetic Health and Society.  Sorry, I have to read these acronyms.  What they do is they actually have panels come in of public.  They had a very moving one which is the most moving panel I've seen yet, is a group talking about genetic discrimination that these people actually had experienced and it was probably some of the most moving testimony I've seen since I've seen Jesse Gelsinger's father testify to Congress.

They also web cast their meetings, which would get this — it's better than a flat transcript but it really is not as good as seeing you in person, but it will get out to other countries.  The other one which does a much better job in some different areas is the Secretary's Advisory Council on Human Research Protection and they, right now, are looking at revamping the CFR and one of the areas is children.

They've been discussing a lot about what to do with well children, sick children, what are risks, what are limits.  So in your future, I would suggest looking at them.  The thing that's distinctive about them is that when you walk into their meeting room and they meet regularly in Alexandria, the other one meets regularly in Bethesda, they do not sit in a circle away from the public.  They sit in two sections of halves and those members are there and there's a podium in the middle and behind each half there's a screen so that nobody in the room is having a problem because there are two screens facing at angles. 

So you have the public back here but I was taken back because the room was practically full and I couldn't find a seat.  Why?  Because they have a whole group of ex officios so they don't just have people that are from around the country, but they  have people within town, they're actually assigned there with different departments which surprisingly because one of them is the CIA, because they wanted to create harmonization rather than be a conflict and them slow down their work.

I don't know if your ex officios would be congressional or it would be judicial members or where you would pull them from, but that made a lot more participation because they could ask things throughout the meeting and get some immediate response.  They also meet outside of the regular public meetings so they know what they're talking about.  There's one person assigned that meets with them. 

The screens and the setup I talked about so the public feels like they're already part of the process because the podium and they're talking more to the public.  And these people are around here taking notes and of course, typing.  I, myself, am paid to monitor these meetings, not just for Case Western, but for the other three Centers for Excellence because National Institute of Health, the Institute that funds us, is watching to see how well we collaborate.

And lastly is public comment itself.  Public comment with that particular group one of the more interesting sessions the man that was the head of a med school, I believe, from the Midwest, had flown out and was appalled at what they were doing about adding more and more layers that they never even get to when they're looking at doing research.  And he was frustrated with that, but he was also asked to have public comment in the middle because his schedule did not allow him to wait until the end of the meeting two full days.  And so this group had always had public comment at the very end.  I'm always witnessing people leaving and such.  I would like to see public comment more — and that goes back to my original comment about reaching out to the public. 

It's not just going around and doing a road trip but it's the question of do you want presence with the public or participation?  Thank you.

CHAIRMAN KASS: Thank you very, very much.  I'll say only one tiny thing, I'll say two things.  One, I'm glad for Dr. Pellegrino that he has these comments at the start.  I could have used them earlier because some of them are really very, very fine suggestions.  One comment just on the shape of the table; that was my doing and my doing based upon having been a presenter at NBAC and other such meetings where you have the August people sitting here and the audience out there.  It runs the risk of being theater.   It runs — especially in Washington with hot issues like this, when there are people out there scribbling, I would like to create the climate in which we try to pretend that we're not — we don't have to somehow trim what we have to say because there's somebody out there who might take it amiss.  So that we should try to have the kind of conversation — don't take this in the wrong — as if we were the only people in the room, not because we don't care about who's here and participating but because I don't want the conversation to be distorted by posturing and by theater and by a worry about the press.

So to produce a kind of more intimate setting, where people might forget and in fact, have a much more honest conversation, that was my insistence and that it produces a greater distance, I understand, and there are other ways — there might be a way of trying to do both, but with these delicate topics and lots of people afraid of saying something, I would like them to be as little afraid as possible.

MS. POLLARD:  That's fine.  If you could just also put a map out.  I mean, some of them have it and if you sit regularly, you start knowing people's voices, so I know people sometimes a lot more from the back of their heads than the front, but one of the groups would have a map saying who's sitting around that table and who's at what chairs because it is — while they're nice looking signs this time, they are harder to read. 

CHAIRMAN KASS: Thank you very much.  Look, the hour is late.  We're just about ready for adjournment.  Let me simply say very briefly on the record, first of all, what a privilege it has been to have served as Chairman of President Bush's Council on Bioethics.  For a first generation child of American immigrants to be given this opportunity to serve is just a great blessing.  To be able to serve in the company of such thoughtful, serious, public spirited and by and large collegial and always, always respectful colleagues, it's an experience for a lifetime and I will treasure these days always.  I'm happy to say that it's not fare well and au revoir and I look forward to sitting not in this seat but with my back to the audience if Ed will continue to keep this arrangement. 

Thank you one and all. Godspeed and we will meet again under new and vigorous leadership.

PROF. GEORGE:  Leon, I don't want to steal your thunder here but this is going to be probably the only chance in my tenure as a member of this Council to say I speak on behalf of every member of this Council and I want to say on behalf of every member of this Council, thank you, not only for your leadership but for the example of integrity, humanity and, indeed, nobility that you've set for us all and for the nation.  Thank you.

(Applause)

CHAIRMAN KASS: Thank you and we are adjourned.

(Whereupon, at 12:04 p.m. the above entitled matter concluded.)

 


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