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Friday, November 21, 2008


Session 6: National Bioethics Commissions: Looking Back on the President's Council and Forward to the Future of Bioethics

Council Discussion

 
CHAIRMAN PELLEGRINO:   This session, I trust, will be as interesting but not as active necessarily as our last discussions. It's a very, very important one. It has to do with an idea that Dan Davis and I would like to present before you. There is nothing very original about it, but this Council, coming to the end of its term — we don't know exactly when. That will depend upon the new administration and its wishes. But both of us, going back and looking at where we've been and where we have come from, came upon the fact that this Council has been in continuous existence longer than any of the others, and so I wanted to just go through a few slides very, very quickly, suggesting to the Council members for their consideration whether or not they would like to be part of or would agree to or think it worthwhile to reflect on our experience, not necessarily to instruct the next administration what they ought to do — I'm sure they have clear notions on where they would like to go and so on — but rather to reflect on this idea of a national commission or President's Council or committee. There have been a series of them, and I'm just going to go quickly over them, reminding you of where we have been. And some of the questions that have been leveled at both Dan and me over the past close to four years now that we have been working with this Council — three and a half years — and get your ideas about whether or not a considered reflection on those might be useful as a comment on what many people think should be a continuing effort of government somehow.

You all know that bioethics has expanded well beyond its origins in premedical ethics in a very brief period of time, really, to involve almost every aspect of human life, certainly anything having to do with the applications of biology to human affairs. And once you say that you are moving from the halls of academia, where we would argue these things and look at them from a theoretical perspective and then from a practical perspective, moving into public policy. And such a body has a role, and what kind of role should it be? So if you'll give me a few moments to run through a few slides simply to point out where we have been on these matters and some of the questions that have been posed us. And I'm going to ask Peter Lawler, who has been kind enough to agree, to open the discussion on this particular topic.

Let me add that this is not a private project. We think it's a project of all the members of the Council at present, and I want to assure you that all the members of the Council previously, and certainly particularly to my predecessor as chairman. But I didn't think we should move in any way until this group gives us some ideas, not necessarily deciding it here today but discussing the issue and let us know by the way we usually communicate whether you think it's a good idea, whether you would add different questions, or whether the idea, perhaps, does not have merit.

I've just listed here the various commissions, councils, et cetera, et cetera, the years in which they functioned. They were familiar to most of you. And you can see, going down to 2001, we are authorized until 2009, but just in what way and how we do not know. And we will be meeting with the members of the transition team, who will be informing us of what their directions will be and what we can do to be of assistance. But for the point of this particular brief presentation, just to remind ourselves. And I think the very fact there have been so many councils is an indication that very, very clearly the matters we discuss are of public moment, significant moment, and I don't think it requires a great deal of perspicacity to appreciate that these problems will continue or multiply, become more important all the time, and more and more become matters of general public moment in a democratic society.

Here are some of the questions that have been put before us, which we've answered personally and — at least I haven't done any in writing. I don't think Dan has either. The questions that were posed to us and made us think about what our role should be. And I'd like to point out again, this is a set of questions merely to open up the inquiry and then to hear your thoughts.

What should the primary function of the Council be? Should it be primarily educational in a democratic society laying out the issues, at least basic issues without necessarily resolving or solving any of them. We certainly have no policy authority at all, but we are in a position to recommend if we come to consensus. Should consensus-based reports be an aim or the aim? Should we strive more for emphasis on a particular outcome rather than on the educational role of laying out the issues on both sides or all sides?

We have focused on specific issues. To what extent should that be the major — framing recommendations for policymakers moves a little closer to the applied aspect of what we do. How detailed should that be? How close of a liaison should there be, if any, in discussion with the actual policymakers? Again, these are some of our questions and questions others are giving us that we pass on to you.

Should the Council have freedom in establishing its agenda? I think I can say at least in our short period of time — by that I mean Dan 's and mine — we have had the freedom — this Council has enjoyed the freedom of establishing its own agenda, remarkably free. Or should the agenda be in large part laid out for us, for the group, by the White House? After all, this is the President's advisory council on matters of bioethics. At the very beginning, those who were in the Council long before I had anything to do with it were dealing with an agenda at the beginning and then had begun pretty much to have their own shaping of that agenda.

What should the connections be to other government agencies? Since we've been in this function, Dan particularly has been in contact with a variety of government agencies who have sought us out and want to know what this group is doing, be kept up with it in having regular conversations, and HHS and other groups without detailing them.

What should those connections be? Should they be closer? Should they be distant? Should they be advisory? Should we seek them out? Are there particular liaisons which we should establish as being more relevant than others?

The national commissions in the past have had much closer relationships with the legislative branch and input went both ways. What should those relationships be? Do some of the Council members feel that we should have had a closer liaison to have closer input? Some have done it as individuals, but as a body we have not had formal connections with other governmental agencies. What about the terms of Council members? Some people have argued for staggered terms. Others think, no, continuity. The way we've functioned, largely we've stayed with, by and large, the original members of the Council. Some have dropped off, and we've had some very excellent ones who have taken their places. But what is the best arrangement from your own experiences in other institutions to provide continuity from one administration to the next? Or should they be created anew each time? There are advantages to both that you can think of.

Continuity. On the other hand, a new group coming in and looking at the questions from a new perspective and a different perspective. And this is all, of course, absolutely idealized. There will be partisan points of view that need to be represented. Some feel that would be assured by rotation, others not. Some would be looking and have even suggested to me that we should have a continuing body that rules on bioethical issues, a kind of Supreme Court of bioethics. I put these before you because they have been proposed.

What about our task, if any, in the resolving of interagency conflicts when policy recommendations are in conflict with each other? Again, I'm putting the questions in terms put to us rather than suggesting where we should go.

This question has been asked over and over again. I know there's at least one doctoral thesis in the making on how effectively this Council and the others commissions and committees and others — what has been their impact on actual practice? How effectively have we fulfilled whatever goal we've set ourselves, whether it's educational or policy suggestion or policy formulation. And how do we realize this kind of mandate most effectively in light of what in fact its impact has indeed been?

The impact of the political, cultural, ethical, and religious pluralism on the Council's deliberations. Should it take into account — this is of course a universal suggestion, I think, to put it more practically­ — take into account at least a large majority of the dominant, ethical perspectives. But the feeling has been at times that through the history of these councils that they've represented one point of view or another. Some think that if it's a discontinuous group that the way to do it, you'll have emphasis one way or the another, and then a new group brings in a new emphasis.

Should we try to represent all the ethical or the major ethical perspectives or should one take the most compelling position after looking at the evidence? Do we offer moral compromise in the interest of political exigency, putting ethics a little bit on the back burner, so to speak.

Looking back at another aspect of it. Are there dangers in a government-sponsored ethics-advisory body? I'm not going to spell these out. You're imaginative enough to know what the possibilities are. Or does the complexity of the problems make it all the more necessary to have a body to unscramble them or to help to unscramble them for public discourse, for public examination or interagency examination, et cetera?

Those are the questions that we've had put before us, taken from commentators. Many have had very, very strong feelings, and I would like to simply — there is a little question for the [inaudible] get your ideas. A) Is there something to be gained by reflecting on the fact that we've had a continuance existence for eight years? B) What are the feelings of those of you who have particularly been on it for the whole period about these kinds of questions? And, [C], what are the more relevant questions in your mind? And would you be willing to — and you don't have to commit yourself at this point — participate in what we have in mind, is that individual members might express their own opinions on these or other questions in something of — for identification — something of an anthology of what your feelings are.

For myself, I believe these kinds of bodies will persist. They'll become more important, and for myself my major concern only is that we do not develop a Supreme Court of bioethics, but others may disagree with me. I've had people make very strong suggestions that we should have one which would say, “This is it,” and that's the easy out, of course, in ethics, which I think quickly devolves into being something other than ethics but ideology.

Thank you. Peter ?

PROF. LAWLER: I have a very limited perspective on this. I wasn't even on the Council from the beginning, and I'm certainly not one of the leadings members of the Council, but what the heck.

The Council has been given two missions: to advise the president and to provide a national forum on bioethical issues. The second mission, it seems to me, has been to inform our citizens on the reasonable controversies that exist over the big issues about the relationship between science — especially scientific progress — and human life. On the second mission, the Council, it seems to me, has succeeded wonderfully.

Lots of folks disagree with me. This Council has been viewed with suspicion and even contempt by all sorts of experts, by large parts of the scientific community, and by large parts of the bioethics community. It's even been written this Council has been the heart of the Republican war against science, and the bioethicists even say this Council is full of a bunch of amateurs. Well, I haven't seen any war against science here, and if the Council is full of amateurs, it's only in the sense of being full of lovers.

We were reminded yesterday that our physicians, such as Dan and Ben and Paul, are certainly leading, really path-breaking scientists who are in love with their hugely important work in both the theory and practice of medicine. Not only that, we are reminded that our great doctors are so much more than mere physicians or scientists, that they are distinguished in so many ways by who they are, what they've done, what they've read, and what they believe.

Dan, for example, didn't just ornament his moving comments yesterday with a cool Kierkegaard quote or two. He really showed us how his deep reflection in Kierkegaard enriches his practice of the art and science of medicine. So Robby was right in a way that there are many human issues about which medicine as medicine has nothing to say. But that's not the same thing as saying that our wonderful doctors have nothing to say. They've spoken time and again with authority, not to mention with wit, charm, and sensitivity about every human issue under the sun.

Now, another thing that occurs to me is that there is a real and deep diversity among members of our Council about who we are. That diversity was shown last session in that dispute been Janet and Alfonso. The differences that separate our Council members are really pretty fundamental, and they reflect at a very high level the intellectual and moral diversity that characterizes our country as a whole. But these disagreements, the Council members have shown us, aren't unscientific, and they certainly haven't been about shutting down real argument. This is, not only have they been civil and respectful, they have never been based on ignorance of or hostility to what we can know through science or ignorance of or hostility to the amazing things science has and will do for us.

So this national forum has shown us that reasonable scientifically informed and eloquent men and women disagree on what it is we can know, on who we are, and on what we're supposed to do in our particular time and place. And it's those deep and reasonable disagreements that make bioethical issues so tough for our country. So let me just say two things: I hope President-Elect Obama continues the same level of excellence and the same degree of moral and intellectual diversity that we find on this Council. Let me also say I've learned so much just sitting here and listening to you all. Thank you.

CHAIRMAN PELLEGRINO: Thank you very much, Peter. Any other members of the Council? Dr. Dresser.

PROF. DRESSER: Thank you. That was very eloquent. I'm not sure about where to go with this idea. One thing strikes me. If we were to think about issuing a report or something with just our views, I'm not sure that would be as much of a contribution as some sort of broader conversation. It might be risky to organize, and it would have to probably be under the auspices of an academic institution. But a conference where those of us who are here who would like to participate could, but to have people from other government groups, the President's Commission, national, and so forth. And then also people who have not been part of the system. Some people to speak and also perhaps some ordinary people who might have some thoughts about this work.

If that could be done in the spirit of civility, I would think that that would be more interesting and less insular than a report that would only come from this group, perhaps provide more — I don't know if there is such a thing as progress, but move the ball.

A couple of other points. I think this whole idea of how a group like ours and other groups can contribute to policy depends on what the request is when the body is formed. So the national commission has specific policy objectives. We did not. In general, bioethics has a very tangential impact on policy. We don't — for example, we hope to have a report on access to health care, but we will not be able to include the economic perspectives, all the other areas of expertise that one would want to be included in the formation of policy. So I think it's rather arrogant to think that a group like this would ever have a leading role unless it were in a circumscribed situation like the national commission to propose the basis for regulations on human research.

And then the other question is, how do you — have you had an impact? How would you measure that? That would require very good empirical research. Certainly if you're talking about educational impact, you would have to figure out a reasonable way to assess how many educators has this reached? How many students has this reached? How many hits on the Web site of people who have read the reports, and that would be a very difficult, I think, task to take on. But I think if you really want to measure the impact, that's how you would have to go about doing it.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much, Rebecca. Carl ?

PROF. SCHNEIDER: I have been here such a short time compared with most of the people here that I don't really feel very competent to talk about this commission, which seems to me to be quite distinctive in the way that it's approached its work compared with its predecessors. I have, however, read the works of the predecessors at great length. I'm currently writing a book about the regulation of human subject research, and so I have had to go back 30 years to read these reports. And as a way of making policy — policy here and not just talking about some of the ethical issues that are involved — I think these commissions have proved to be — again, I think this Council has taken a very different kind of approach in trying to talk more narrowly about some of the ethical issues that are involved.

The other commissions have essentially been importantly responsible for setting up the present system of human subject research, and they did it in a dismally bad way. And the consequences have been disastrous, and they have never been investigated. There has never been a systematic attempt to justify the human-subjects-regulation system. There is recitation of past scandals; there is discussion of what in principle researchers might do wrong. But despite the presence of these commissions that year after year issued these reports, there was never a systematic attempt to say, “These are what the problems are,” “These are what the solutions are,” “This is how we will measure success,” “This is how much success we will have,” and most of all, “This is what harm has been done.”

The system was launched, and it has grown far beyond the imagination even of the founders in a way that goes unchecked because there is no mechanism for checking it, there is no mechanism of accountability at all. So I asked myself how could such a damaging system, a system that seemed to me to be costing lives and costing large amounts of economic resources in exchange for very little good, how could such a system have gotten started? And I think the answer is that it's very hard for a group like this, for a council, not to reflect the conventional wisdom of its time. And conventional wisdom leads people to easy solutions and to easy definitions of problems and also to an awful lot of bad prose.

The agony of reading these things, and one of the pleasures of reading the reports of this Council has been that they were written in English in a recognizable form.

I'm not sure where one goes from all of this, but I think that it might be worth an inquiry into the products of this kind of group as seen 30 years later. Such an inquiry, as nearly as I can tell, has never been attempted.

One last thing. Insofar as it's a bioethics council that tries to talk about the kinds of problems the bioethics literature addresses, the Council has a difficulty because bioethics isn't really a discipline. It is a collection of problems that people share an interest in, and it is not a field of study that has been able continually to attract first-rate people to think about it. It is a field of study that has been very much, I think, weakened by the role of bioethics as a cultural and ideological movement.

So insofar as a group like this is parasitic on inquiry, it is parasitic on a not very nurturant — what do you call the­­ thing the parasite feeds off of? Host. Well, that's a very strange word under these circumstances.

CHAIRMAN PELLEGRINO: Floyd ? Floyd Bloom ?

DR. BLOOM: Just to speak to your item on the agenda, it seems to me looking back is not the right attitude, that what we have accomplished, what the Council's role in this matter of bringing to the public's attention the ethical issues in advances of science or technology has been accomplished in the books that have been written or are in press now. We don't need to look back at those. They stand and speak for themselves. I think what might be helpful to whatever the next administration wishes to do in this area is to look forward and see the challenges that we were faced with that we couldn't overcome. And to be able to specify for the public what we need to know to be able to overcome those, because that's where we are.

If I look at our arguments yesterday on futility, what scientists stand for is the fallacy of futility. What's futile today may not be futile tomorrow if we advance knowledge in the right directions. And so I would suggest that a brief statement on the challenges that you've listed in these seventeen questions would help the next body challenge to do what we were challenged to do.

As Peter said, as have many of us, we've learned a lot from each other during the times we've debated the issues and interpreted the signs for each other. And a continuing body should examine those kinds of issues.

In my field of neuroscience, the impact of ethical considerations has become so intense that a society for neuroethics was originated and meets yearly to discuss these things. Maybe the future of bioethics in a similar kind of public scientific society that's devoted to these questions but not necessarily a federally sponsored entity to do so, because any federal administration will have its skeptics and its doubters, but the issues aren't going to go away. They've been with us ever since technology started to improve life and going back to the printing press and probably before. Things always seem to have evil sides if we let the sinister overwhelm the potential good for the public. So I would encourage you to look forward, not backwards, and to set some criteria and challenges for what lies ahead for those who wish to pursue this matter.

CHAIRMAN PELLEGRINO: Thank you very much, Floyd. Paul McHugh and then Gil Meilaender and Robby George. I didn't miss you, Robby.

DR. McHUGH: I was a member from the beginning, and I want to say something fairly simple about what has been most successful for this person, myself, who would be described by anybody, I suppose, as an amateur in bioethics in the sense that I have not made it a profession. But I have learned a lot from this Council, and I particularly like two things about the Council and its workings.

The first thing I very much appreciated about the Council is its diversity from its beginning, diversity in opinion, diversity in political party, diversity in experience. Some of our members were really card-carrying bioethicists, but many of them, like me, were interested in matters, I suppose moral and ethical primarily, because of the work that we were doing every day. And that kind of council, I think, led to wonderful capacities to learn as we went along.

The idea built into our mission statement that we were not to make consensus a primary purpose was very important in that way, so the Council was structured with people of diverse experiences and of diverse opinions, and it worked in that way without seeking to find a consensus. But it did seek something else. It sought — I believed and did well — in trying to spur public discussion in the process of dealing with contemporary, real scientific issues.

Where I learned the most and where I think the Council filled the pages of the public besides what we've published but also in what the attention of the public was — when the best scientists in the world were brought here to describe the scientific experience, the scientific future, and the scientific issues, so that we all became at least reasonably familiar with that regardless of what we were. And then from there we had our discussions about our concerns, our worries, what we would like to see happen, what we wouldn't like to see happen. Those kinds of things drew the attention of the public to our Council and I think accomplished an important purpose above and beyond our very important publications.

So I'm absolutely in agreement with Dr. Bloom. I think we should look forward in the sense of what the future holds using the experience of the past. That is, get a diverse council. I don't think it should be a council made of representatives of particular things but simply active people working on active issues that would have some encounter with these matters and then bring to that council the best scientists you can have and have the conversation flow from that as people get informed.

This would really teach the American public not only what the issues were but might also show the American public the way you approach these matters: learn the science first and then discuss it.

CHAIRMAN PELLEGRINO: Thank you very much, Paul. Gil ?

PROF. MEILAENDER: Well, I'm afraid I'm actually channeling Paul, but as any of you who have been to faculty meetings know, the fact that someone has already said what you think does not mean that you should not say it also. And I'm in a sense going to just concur with his two points.

I wanted to say one thing first. I'm not sure about the notion of a kind of a general project to take up these questions, partly for reasons Rebecca mentioned. I just think that to really do it well would require a kind of approach that probably is not within our power to undertake at this point and simply a collection of our personal observations on it. I'm just not sure how useful that would be.

I will say I can actually think of something I think we should try to do that would bring us full circle, and that is that if we were given time and opportunity, I think it would be good for us to bring up to date a report on what's happened with stem cell research. And before Janet jumps on me here, I say not in order to revisit the question of embryos. We don't need to argue that question again, but simply informatively to bring up to date what the state of the research is. And one needs to render no judgments whatsoever on that but simply to do it.

That, I think, would actually — that was the one issue that we were charged to deal with, and it would make sense to me to do that if we wanted and had opportunity to sort of bring something yet to conclusion.

And just briefly, I think Paul is right, that to me the two real contributions of the Council are, one, that we really did have genuine disagreement here because we understood that our task was not to reach consensus. I mean the executive order that establishes us says that we're under no obligation to reach it. If you think of yourself as whispering in the ear of legislators all the time and having to come up with something for them if you have to kind of wield a power of that sort — I mean, you may accomplish certain things, but you generally get driven to a lowest common denominator. You don't really go deep because you have to find something that everybody agrees upon, and if we find something that all of us around this table agree upon, most of the things each of us cares most about will have gotten eliminated in the process. Now, you know, that's useful. That's why we have legislators. It's got to be done. But we did something a little different, and I think it was good that we did it.

And the other thing, I was glad Paul mentioned it. I think many of our best moments have been when we brought in people not to engage in ethical reflection for us, but people who were just experts in some area of science or technology. And we did our own ethical thinking about it. We didn't agree necessarily on it, but that was part of the genius of our best moments, I think. It would be a shame if some future body didn't continue to do that.

CHAIRMAN PELLEGRINO: Thank you, Gil. Robby George.

PROF. GEORGE: Thank you, Dr. Pellegrino. If you will permit me, I would like to begin because I don't know whether or when I'll have another opportunity to do this. I'd like to begin by expressing my gratitude to my wonderful colleagues on the Council. I am one of the members who has served from the beginning, and it's been an extraordinary blessing to serve with such people. I have learned from every single one of you, and I'm grateful for that. And I must say, Dr. Foster, I think I've learned the most from the people with whom I've disagreed the most profoundly on important issues. And that's very fitting. I think that that should be the case, and it is indeed the case.

I also want to express my gratitude to the extraordinary staff that we have had from the beginning. It has been such a pleasure to work with the members of the staff at this Council.

I shouldn't single people out, but we have wonderful leaders in Dean and Yuval and Dan and Carter in the General Counsel's Office. And if I may just say something very personal. Diane Gianelli has been such a wonderful person in enabling me and, I'm sure many of you, to have a kind of direct access to the information that we need to do our jobs well.

I also want to thank you, Dr. Pellegrino, for your leadership of the Council, which has been magnificent and, of course, the great, great Dr. Leon Kass, who was an exemplary chairman for our Council and who led us through very difficult deliberations with such wisdom and with such grace and always with impeccable fairness. I hope that the reports that we have produced, which I think will stand the test of time — every single one of them will stand as a tribute not only to our Council but particularly to Dr. Kass, whose leadership made them possible.

I also want to thank someone who is not being thanked very much these days. I'd like to thank President Bush for constituting such a Council. He is ultimately responsible for the blessing I have had of your colleagueship, and I certainly want to thank the President for that and for the honor of being able to serve on the Council.

President Bush made quite a remarkable decision when he constituted this Council. It certainly would have been reasonable and acceptable for him to have selected for the Council members who down the line agreed with him on the basic moral foundations of the issues that he Council would be charged to address. That would have been more in line with what previous presidents have done with their councils. There would have been nothing wrong with it, and in some ways there advantages to doing that. The President is the guy who won the election; it's his values that really are in the driver's seat. And a Council who shared his values down the line could help in helping him to apply those values to new problems or difficult bioethical challenges.

President Bush opted for a different course. President Bush opted to appoint a Council that was truly diverse, not only in terms of disciplinary perspective and experience and background but also in terms of moral point of view. He appointed to the Council in full knowledge many people who disagreed with him about fundamental moral questions, including those pertaining to the initial issues that he placed on our agenda — embryonic stem cell research and human cloning. He appointed people who voted for the other guy in the election in which he emerged as president.

That was quite a decision. He got no credit for it. He got no credit for it. In fact, you will recall that many in the media and some, I regret to say, in the world of bioethics accused the president at the very beginning of having “stacked the Council,” and indeed of having stacked the Council with religious conservatives, people who entirely shared his perspective and even his religious outlook.

There was even an article, I regret to say, in the Washington Post that you will all — those of you who were on the Council at the time — will recall in which that allegation was put into the foreground.

So he didn't get the credit he deserved for this extraordinary step of appointing such a diverse Council. He didn't get the credit for the open-mindedness and the openness to argument and ideas that was represented there. And it increases the scandal of the accusations to which Peter referred, that the Council was hostile to science or hostile to inquiry.

In fact, it's a remarkable Council, I think, on any account, the most diverse council that has ever been constituted. We will see what President-elect Obama decides to do, whether he will follow President Bush's example and appoint a council that is diverse, whether he will reflect a kind of openness to argument and to different points of view on a council in the way that President Bush did, or whether he will go in the opposite direction and appoint members of the Council who basically share his moral convictions and ask them to help him apply them to other bioethical issues that the next Council will face.

Certainly if he chooses to go down the path of appointing a diverse council, I will be the first in line to applaud him. If the council includes a substantial number of people who disagree with his moral perspective, who perhaps voted for the other guy in the election from which he emerged as President, I think that would be worthy of very great applause.

Dr. Bloom is right. Our reports will speak for themselves, and I do think that they will stand the test of time because they are examples of laying before the public the very best arguments that are to be made on competing sides of important issues and laying before the public accurate information, information stated in terms that are not evasive, that do not degenerate into euphemisms, that do not function as rhetorical ploys. The Council's reports are written in straightforward language. The proper words are used to name the things that they are meant to name. The facts are laid out.

I applaud you, Mr. Chairman, and Chairman Kass for being open to having dissenting and concurring reports. We were never pressured to form a consensus. That, of course, is in line with the executive order with which we were founded, and our chairmen were faithful to that, and good for them.

I think the diversity of the Council, particularly the diversity of moral points of view as well as disciplinary perspective, helped very much with a problem that I think Professor Schneider identified, and that is having councils reflect conventional wisdom, even the conventional wisdom of the kind of establishment or even an elite. It would be very hard for us to fall into the sin of simply reflecting the conventional wisdom because so many of us have different points of view. If there is a conventional wisdom, is it Robby George's or is it Janet Rowley 's? Whose conventional wisdom is it? If you have Janet, Dr. Rowley, on the Council, and you have Dr. Meilaender on the Council, there's going to be different wisdoms, and none will be the conventional wisdom.

And with that, Mr. Chairman, let me thank all my colleagues once again and also thank you.

CHAIRMAN PELLEGRINO: Thank you very much, Robby. Further comments? Yes, Janet.

DR. ROWLEY: I'll take a lady's prerogative. Firstly, many of the comments that Robby just made would be ones that I would echo because we have been blessed with the highest quality of colleagues and also a very, very helpful staff. And I'd like to go lower than Robby did in terms of also thanking Emily, who is not here anymore, but Judy for helping me get to and fro and not miss planes and other things. I'm grateful for that.

I think that my comments — and they're obviously comments for the future mainly — have to do more with procedural issues than substance, in part because I think it's­­–each one of us looks at science and sees issues coming down the line. Floyd has already mentioned the neuroethics. Obviously we've touched in many sessions on the ethical issues that are raised by genetics, of which the report on newborn screening is just one aspect. As we know more and more — or people know more and more about their own DNA and society does, how are we going to use that information, and can we focus on the fact that different groups are going to have differences in DNA? And you have to really put it in terms of differences, not a judgmental thing that this gene is better than that or this difference is better than that. And that's going to be a challenge for many of us and for the future.

One other thing I'd like to say with regard to Robby's comments. I think the diversity of the board, the Council, while it is certainly ultimately to President Bush being willing to accept the diversity, I know in my own experience I wasn't an especially acceptable nominee to the White House, and it was Leon Kass who I think gets the major credit for the diversity of the Council and also for, if you will — and I'm probably using the term wrong — the Socratic way in which the Council just operated in discussions where people talked in turn, just as you have instituted. The one thing was that Leon included himself, and I think we have been the poorer for it, because you yourself, Ed, have not made comments about matters on which you've thought long and deeply. So I would encourage you to take a more active role.

But that isn't — the procedural issue — we tended in the beginning to focus on specific issues and really focused in terms of trying to have several meetings on a particular topic and then with the notion of writing a report on that particular issue and moving on. Now, it's true that after stem cells we did sort of search for what would be the next issue and had several brought before us, some of which we agreed would not be fruitful for our discussions.

I am concerned right now that we may have too many irons in the fire. My own bias is to say that for real influence on the future and on policy — and I don't see any reason why we can't have reports that may influence policy — the one on access to health care is for me the — I would put at the top of the agenda. So I think having a council such as this continue, I think diversity in the council of both points of view and background and expertise is critical. And I think that that certainly should be a goal of the next president.

CHAIRMAN PELLEGRINO: Thank you very much, Janet. Just to reassure you, on the 24th of November you will be receiving another close-to-the-end version of the health question. So we have not dropped that at all. It will be completed. We intend to complete all the things we have going now, and we appreciate very much your interest in our keeping that momentum going. Thank you.

Bill, I'm sorry. I keep looking the other direction. You have to forgive me.

DR. HURLBUT: I first want to say that I think the goal of issuing some kind of a report or even just a statement from our Council — the Council's collective experience and retrospective and prospective reflections — would be a good idea. And it might not have to be very long, but I think it could include both collective, agreed-upon statements and personal statements. I think it could be oriented both externally and internally, if you will. Externally in the sense that we might preempt some of the problems that we as a Council had by explaining to the outside world what a council is and what it's expected to do and that it comes, at least in our case, with a range of opinions.

And then internally, I think there are things we could do and we've all learned that we could do that would be better. I have a whole list of them actually that are not big criticisms but ways we could, I think, improve the process and give some hints to future councils as to how to conduct themselves. Just like people have learned over history how other institutions work, including things like medical centers and marriages, we too are a phenomenon that learns as it goes, and I think we could draw on that.

One other thing I just want to say, and that is to add to what has already been said and particularly to what Robby said. The diversity, which I think we've all now agreed is a major element of what has made our — the best of our Council emerge. The diversity that President Bush instituted in our Council is not just kind of a vague respect for the range of opinion but it is a fundamental acknowledgement of the deep seriousness of what we came here to do and the depth and difficulty of the matters under reflection.

I remember the night before our first Council meeting — and I too was on the Council from the very beginning. I came in early and I went running, as I do every afternoon. I went running down around the Washington Monument and the Lincoln Monument, and it was an amazing moment to realize that I was called to Washington along with seventeen other people to reflect on what I think — and I think most of us will acknowledge — are some of the deepest matters that human beings have been ever asked to discuss and deliberate on. I mean, with the advent of biomedical technology, we know we're at a crucial moment in the history of humanity and indeed the history of life itself. For the first time ever creatures are coming into some measure of comprehension and control of the basic mechanisms of their existence.

And when we met the next afternoon, the first afternoon of our first Council meeting, in the Roosevelt Room with President Bush I felt that he understood the seriousness, of the magnitude of the meaning of what we were about, and I remember he said something­­ — I don't remember the exact words, but something to the effect that these issues — he asked us to articulate the best arguments on all sides of the issues. He was very clear about that. And he said something to the effect that he thought these issues transcended time and culture, that he had assembled us in a way that we should acknowledge that these were reflections that would affect the lives of our children and grandchildren, that we all had a responsibility that went way beyond the specific politics of the moment we were in, and that these indeed — these issues and how these matters were conducted and resolved or at least set in the right trajectory — would perhaps reflect more in defining his administration than anything else, including the war on terrorism, which struck me as a remarkable and trenchant insight.

I felt it was a great honor to be asked to be part of this Council. I think the honor of it and the importance of it was poured into the way it was framed and instituted, and I think if we can communicate the seriousness of that and what we've learned about how to conduct it to the future councils and to our country as a whole, that would be a really great service.

CHAIRMAN PELLEGRINO: Thank you very much, Bill. Do we have any other comments? We'll have a public session in a moment. That's been our custom.

I didn't think this was going to be a farewell or final meeting, and so I won't make a farewell address. But I certainly feel I'd be remiss if I didn't respond to some of what was said. Certainly I was most impressed when I was asked to join this group not only with the diversity but with the level of discourse, with the fact that the people I knew inherently certainly must have differed on some very fundamental questions. Their capacity to communicate with each other and to enter into a true dialectic was very, very impressive.

I want to thank all of you for allowing me to come in in the middle of the play, where you had been led, as you said Robby, with a superb leader. I think the construction of the Council was certainly Leon Kass 's work, and he should have full credit for it. And I feel that you are kind and generous to accept an interloper into this group, because Leon himself decided he did not wish to continue.

I hope that my concern with keeping on time wasn't irritating. And you're right, Janet. I have deliberately refrained from introducing my own ideas to a significant extent because I feel the job of the chairman is to allow and pull and draw the Council members into the discussion, and that's always been my aim. I think my thoughts are expressed in far too many publications, so I felt no need to burden you with some of those same expostulations.

But in any case, I do want to thank you very, very much. I do not know, neither Dan nor I, how long we will be in existence after this time. We are authorized, as I said, until September '09, and what that means we will try to discern.

And I want to say also for the outside world that those who used to greet me by wondering how I was surviving under the enormous pressure to do it this way or that way from the White House, there has absolutely never been any suggestion of that. And to me that's been the remarkable thing about this group, because I have met with virtually every one of the other groups you saw on that board, and they were not always as fairly and evenly divided as this group. So thank you all very much.


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