The President's Council on Bioethics click here to skip navigation


    Meeting Transcript
    July 12, 2002

    Ritz-Carlton Hotel
    22nd Street, N.W.
    Washington, D.C. 20037

    Friday, July 12, 2002


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

    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

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

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

    Alfonso Gómez-Lobo,Dr. phil.
    Georgetown University

    William B. Hurlbut, M.D.
    Stanford University

    Charles Krauthammer, M.D.
    Syndicated Columnist

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

    Gilbert C. Meilaender, Ph.D.
    Valparaiso University

    Janet D. Rowley, M.D., D.Sc.
    The University of Chicago

    Michael J. Sandel, D.Phil.
    Harvard University



    CHAIRMAN KASS: All right. Welcome, everybody. I hope people are refreshed.

    This morning's opening session is on the subject of "Toward a Richer Bioethics." I want to remind everybody that when we began, one of our aspirations was to try to find discussion of bioethical topics that didn't simply begin with the techniques, but began with the goods in human life that we are eager to support and defend and those aspects of human life that are touched by the new biomedical technologies.

    And at the very first meeting, we discussed a paper by Gil Meilaender, which was called "In search of Wisdom: Bioethics and the Character of Human Life." And in that paper, Gil identified four different themes that were somehow central to bioethics even though very often they were somehow implicit in most of the conversations, even if they were rarely thematically treated.

    And the first of those issues, themes that Gil mentioned was the theme of unity and identity of the human being, and in that part of the paper, he called attention to two questions about the unity and identity of the human being. One is the question of whole and part. I mean, do we somehow understand ourselves as a unity or simply as an aggregate of removable parts, whether it be genes or organs.

    And the second question about the unity and identity of the human being had to do with that aspect of us which is hard to simply identify with body, which Gil called in that essay "spirit."

    And I'll just read the last paragraph so that we'll have at least an echo of that conversation. "It is fair to say, I think, that in reflecting upon the duality of our nature" — and this was at the conclusion of the discussion of body plus this extra or addition — "we have traditionally given a kind of primacy to the living human body. Thus, uneasy as we might be with the living body from which the person seems absent, we would be very reluctant, indeed, to bury that body while its heart still beat.

    "In any case, the problems of bioethics force us to ask what a human being really is and in doing so, to reflect upon the unity and integrity of the human person. We must think about the moral meaning of the living human body, whether it exists simply as an interchangeable collection of parts, whether it exists merely as a carrier for what really counts, the personal realm of mind or spirit, and whether a living human being who lacks cognitive personal qualities is no longer one of us or is simply the weakest and most needy one of us."

    The story by Richard Selzer, a now retired surgeon who practiced for many years at Yale and a marvelous essayist and short story writer — the short story "Whither Thou Goest" is taken from a book of his called The Doctor Stories. It gives us an opportunity to think about those large questions with some additional complications, since we are now dealing not so much with the burial of a man whose heart is still beating, but the burial of a man whose heart is still beating somewhere else.

    And I think maybe just begin with kind of an open-ended question. Do people find this story bizarre, weird? I mean, what do you think of this? Just to see where we are for openers.

    PROF. SANDEL: Well, you said, Mr. Chairman, that this story was a suitable reward for our good behavior. I would say it was a reward for our behavior.


    DR. FOSTER: I wouldn't say that it was a bizarre story, but I would say that a number of the elements in the surviving wife are in my own experience unusual.

    And what I mean by that is in some places, the State of Texas, for example, requires that one ask for organs for donations. It's against the law not to do this. So physicians, we do this all the time.

    And my own experience is that many families find as part of the defense against the loss of a loved one is the fact that the loved one's organs have brought life to others or sight or whatever. In some sense it says in this tragic Samuel's death, it's a premature death, and it's what I would call a theodicial death. That is to say, he was going to do a good deed. He was a good Samaritan to fix a flat tire, but it was a trap, and he was killed.

    So that becomes either a secular or a religious theodicial problem, a theodocy, an expression, a death that entails not just natural death, but the problems of additional suffering because it's premature and happened to a good person.

    Sometimes you get cynical about that. My residents oftentimes say in the hospital, you know, the drug dealer who's got endocarditis lives and the intern who's wonderful dies. You know, so they sort of think cynically that the good die and the bad live, you know.

    That's wrong. I mean, I don't think that that's the case, but this was a theodicial death because it happened during a good deed. And of course, if one is religious, then you know, you shake your fist at God and say, "How did this happen?" whether it's Auschwitz or Samuel.

    But most people, in my experience, feel that there's a redeeming component to the death, even if one continues to grieve or be angry, if life comes from it.

    I was just thinking about that this morning. Let me tell you one quick, little story. I was called about a year and a half ago late one night about the son of a family that I knew. He was a captain in the army. He and his fiance and five other young Army officers had come to Washington to run in a track and field meet.

    On the way home, near Arkansas, near Little Rock, the van rolled over, and he was killed and his fiance lived.

    Subsequently, there was, of course, great grief. This young man was a West Point graduate, of great talent and future. His wife subsequently was sent fairly shortly after this to Afghanistan, and she wrote me around Christmas last year, and she kept talking about "my soldiers." She was in the earliest contingent. They had no showers or anything else there.

    And one of the soldiers had committed suicide. She felt so one of her soldiers. She kept calling them her soldiers. He got depressed being over there and killed himself.

    But in her letter, I don't have it with me, but I remember her saying that her — I had said something about her compassion for her soldiers — and she said her fiance's death had changed her life. She felt differently about her soldiers because of the pain of her own loss here, and in that she said, "It comforts me that," like Samuel, his organs had brought life to other people.

    So I think this sense that this was just doctors asking to give away a heart or something like that and they didn't really think about it, and that there was no sense in the whole story, that she thought that was in some sense — to me, she didn't say that she thought that was a good thing. I mean, she's searching for the heart, and I'll comment about that a little bit later if we have time.

    But I think that Hannah's response is unusual in my experience for those who are organ donors, and I find that to be the truth.

    I mean, I take care of the poor. I mean, we take care of the poor, and that's true for poor families, as well as educated families, and so forth.

    So I don't think it's a bizarre story, but I think it's not in my own experience a common thing where the donation of life is considered a plus and partially doesn't ameliorate the grief, but it helps a little bit.

    CHAIRMAN KASS: Mary Ann, was that —

    PROF. GLENDON: When I first read this story, I really thought it was weird. I thought it belonged in Dr. McHugh's department.


    PROF. GLENDON: Then I started to think of it as a story about grief, and I started to remember a lot of behaviors that I guess might be considered weird, but they're sort of on the borderline between this story and a normal grief reaction.

    When somebody dies, if they're buried in a grave, we very often visit the grave. Some people visit the grave more often than others, especially right after a death.

    One of my colleagues in Boston visited the grave of her husband every day for over a year. That might seem a little weird, but actually you could almost write a short story about it. Once on New Year's Day, she met a guy who was visiting his wife's grave, and they started to date. So it just sort of had a happy ending.

    But here's this woman Hannah who if she wanted to visit a grave, she has the problem of what's in the grave. Where is my husband because he's been disaggregated?

    And so I think that produced part of the confusion there. Then that led me to think about the title of the collection, Doctor Stories, and to think that there's a way in which this story is about doctors as well as about Hannah.

    It begins with this rather abrupt statement, "brain dead," and she's in shock. She's trying to process that. What does that mean? The brain is dead. Is he dead? I mean, she has to get through that.

    And then she no sooner gets through that and then she gets this demand for the harvesting of the organs.

    And, Dan, unlike many people who think this out well in advance and do their families the favor of letting the families know what they want, she has to make this decision under less than optimal circumstances, and I think maybe that's why she doesn't feel so comfortable about it.

    So then she says, "Doctors" — here's the one sentence I underlined — "Doctors, they simply do what they want to anyway without really thinking."

    She gave her consent under circumstances when she really didn't think, and she hadn't thought about it ahead. Her husband hadn't thought about it ahead. So she didn't really know how she was going to feel afterwards.

    She made a decision that seemed for all of the reasons you gave like the rational decision, but she didn't understand how she was going to feel about this disaggregation of her husband, and I think the behavior here is behavior that's something like visiting a grave when you're not sure where the grave is.

    DR. FOSTER: I laughed. I said that we started off with the birthmark, and that was sort of an attack on the scientists. It was sort of crazy scientists, and then we end up with an attack on the doctors, and I feel like a double whammy, you know, because I've tried to occupy both of those positions.


    CHAIRMAN KASS: Well, I mean, actually let me say a word. Mary Ann, I would add to your summary of that first conversation what is, I think, absolutely crucial. The physician says more explicitly what Dan sort of implies is in the active of organ donation. The doctor says, "That's what we call it, harvesting, when we take the organs. It's for a good cause. That way your husband will live on. He will not really have died."

    And she says, "Dead is dead."

    And that first view of hers is subject to reconsideration not least because the suggestion has been planted there, I mean, by the physician, and I get part of the weight of the story is is dead dead when the vital parts of the deceased are active, but active somewhere else, and I think that's part of what's set up here.

    Gil, I think I had —

    PROF. MEILAENDER: Yeah. Well, I was going to say that I don't think I find the story bizarre particularly, and although I haven't paid a lot of attention to the question really, and I don't deal with patients, I mean, I know that there's stuff in the literature about the kind of psychological dimension that organ donation involves for families and survivors and the kind of weird sense of connection that they have, and so forth.

    So that didn't strike me as particularly strange, but what I found myself thinking about and unable really to answer in a way was what I thought about the woman or what I'd say to her if she asked me, you know, "Should I keep writing these letters badgering this guy?" and so forth.

    I mean, at one level — well, at one level, I do think it's a little strange. At one level I think she's making a kind of sort of category mistake. I mean, I don't think her husband does live on just because an organ of his is beating in someone else's body.

    On the other hand, you know, the body, the living body anyway and even in some ways the dead body immediately after death, is still the locus of personal presence. It's the only place where we know the human being.

    And I guess I find myself in the position of thinking that she's kind of deluded and wrong, but understandably so, and I might feel the same way because there is something about the body that carries that personal presence.

    So I couldn't figure out really what I might say to her. She seems to me to be wrong, and yet I'd be very reluctant to try to talk her into that fact, that she was wrong, and so it's just puzzling in that way to me.


    DR. McHUGH: Well, I had a number of responses to it, and you could go on a long time perhaps about it, but first of all, just to begin it as a doctor's story, as Dan has spoken from his experience, doctors' experiences in relationship to these events vary with the kinds of patients they are taking care of.

    I take care of patients who are terminal with chronic illnesses, and what happens often in the last few weeks is that the transplant people start milling around wondering when I'm going to say, "That's it."

    And I and my residents begin to feel that there is a little vulture quality to this. Now, I know they're doing it for the best reasons, and of course I understand why they are, but since my tie is to that person who's in a stupor, a comatose state, and that's not where they are, you feel.

    So doctors are not of all one mind and all of one experience. They know the conflict here. And, in fact, when I speak to these others and say, you know, "You're beginning to get a little "vulturoid," they disappear for a while. You can kind of shoo them away for a while because they do understand, and they're trying to do some good.

    And it's up to us, all of us, to remind them of what's happening with a particular person. And sometimes it's the family, and in this situation it's the wife who in some way is saying that.

    The second point is this story is a very interesting story about the kind of grief that you'd get with a sudden death, again, as Dan said, of somebody youthful and very unexpected. It's one of the worst griefs that we experience.

    There's only one grief that's a step worse than this, and that's a mother who loses suddenly a child between, you know, the ages of about two to age 18. That's a terrible grief, and it lasts.

    And in this case, you know, she's talking about a three-year period in which the grief is going on, and that's not unusual. That's a stretch, but it's not unusual.

    And what she has here, in fact, if you take it from a slightly weird quality, she has this nostalgic grief that you'll see amongst patients of this sort, who will wander back, will always want to wander back to where they were with the person and where they walked, and they'll come and say to you, "You know, what's the matter with me?"

    I even have patients sort of like this who come to me and say, "You know, I want to see her. I'm very depressed," and I find out that they've had such a grief or such a death. They don't come in immediately and say that. They come in and say they're depressed. And they say, "Well, my friends tell me I should be over this."

    And I always say, "You have poor friends. Get better friends who can really understand. Yeah, get better friends who can understand what you're going through."

    And so at that level this story was interesting to me, too. At the level of the doctor, the level of the grief issues, and the weirdness of it, but the kind of comfort that she got.

    But, you know, there is, of course, a very deeper issue here that we should really talk to people like Leon and Dan about in the sense that this is deeply alliterative to the Hebrew Bible. After all, it begins with the title, "Whither Goest Thou," "Whither Thou Goest."

    The woman's name is Hannah, the mother of Samuel. It's talking about gather in the wheat and the harvest, and of course, that made me think in terms of my ongoing conversations with my Jewish friends who talk to me about the Jewish-Christian differences over the issue of the body and the soul, and the idea at least in the Hebrew Bible about instead of thinking of an incarnate soul, they want to talk about an animated body. There may be no being apart from the body, and therefore, the values were expressed in terms of life as we know it in the body on this earth. Okay?

    And that was the reflections that I began to have about this, and so the chase therefore here over that one — she doesn't chase the corneas. She says she doesn't go for the corneas or the kidneys and all because maybe you can't quite see them.

    On the other hand, she goes for the animated portion, and I thought that was deeply spiritual and deeply meaningful for us as we talk about the deep traditions of our culture.

    CHAIRMAN KASS: Unless someone wants to respond directly, I have Alfonso and then Michael.

    Alfonso, please.

    DR. GÓMEZ-LOBO: I think in the end there's going to be a lot of convergence around the table, but let me throw my little wrench in here.

    After I read the story I felt critical of Hannah, and I know this is an unfair criticism because I haven't experienced the loss of a loved one who's really close to me in years, and I'm an organ donor. I believe firmly in that. I have it on my driver's license.

    But here were my thoughts. My real question was: is it really her husband's heart that is beating in this other man's chest?

    And my inclination is to say no. Why? Well, I've spent so many years making a living reading and writing on Aristotle, and Aristotle has this very firm view that an organ has life and has meaning as part of a whole. The idea, say, that you can consider the brain as an independent organ, of course, for Aristotle would be totally inconceivable.

    And likewise, here I think that one would have to say that insofar as that heart is beating in someone else's chest, it's already part of this other person.

    Now, I can certainly understand this will to keep a loved one within one's reach, but I also think there's a very important human lesson in the idea of letting go, in coming to a point where you just give up or, well, literally let go what you are hanging onto.

    And this is something I reflected quite a bit with some of the examples that would justify cloning back at it, and one of the arguments given by a philosopher that I greatly respect was that cloning might be justifiable if a family loses a child and then, you know, clones the child to have another one like that one.

    And I really thought that was pretty awful because it was an example of not letting go. I mean, if you come to a point where you lose someone, I guess that part of one's own healing has to be that idea.

    Now, Hannah, of course, lets go at the end of the story, but I would have been more inclined to side with Ivy, her friend, and say, "Look. This whole thing for the moment is quite crazy."

    CHAIRMAN KASS: Could I, Alfonso, maybe?

    Is there not some reason why letting go might be more difficult under these circumstances? I mean, you have the contrast in the story between her husband, Samuel's dream — sorry — narration of how as a boy he followed around looking for his father, and at the end, the language is when it finally passed he felt relief and disappointment, relief because at last he had laid to rest his father's ghost, disappointment because the wild possibility no longer exited.

    She has a different reaction at the end. It's not relief and disappointment, but what if the body is — Mary Ann said the question is who is in this grave, especially if the body whole hasn't — at least there's reason for thinking that he's not all there.

    Now, what would you say?

    Let me just — in a way, the question, and she puts it this way, she doesn't really know whether she's a wife or a widow in some sense because she hasn't been able to — there's some nagging question, which I don't think is simply craziness. It has something to do with the ability to part with a whole body, especially when the doctor has planted the suggestion, you know, your husband won't be dead. He's still alive in other places.

    What do you say to this?

    DR. GÓMEZ-LOBO: First, I wouldn't doubt for a second that this may be very difficult, and I have no warranty how I would behave if this happened to me. I'm sure this is very difficult.

    On the other hand, those of use who have had experience with Spaniards, Spaniards can be very brutal, and sometimes it's wonderful because they put you against the wall and force you to face it. I think a Spaniard would have said to her, "Vamos, chica. Eres un vuida." Come on. You are a widow.

    And the reason for this is because I think there's a finality in death even in the case of transplants. I just don't think that in any reasonable sense her husband continues to live. I don't think so.

    I think it's much more healthy to accept that he's dead.

    CHAIRMAN KASS: And just one last thing. When the bodies are missing, the most recent example we had was after September 11th, and the search for the bodies and the search for the bodies and the search for any even tiny shred of evidence as an absolutely indispensable condition even of the possibility of letting go or of accepting death.

    And she said herself, she would go — you know, if he were missing in action, she'd go to Vietnam or whatever. Is that also not facing the truth?

    DR. GÓMEZ-LOBO: No. On the contrary, I think there's something deeply human in having the direct experience of something. This reminds me of something we've discussed here about why one mourns the death of a baby so much. Well, because one has had her in one's arms.

    And I think that laying someone to rest in a grave has this value of one's seeing the person finally put to rest, whereas not recovering the body, I think, is terrible because it gives the lingering impression that the person could be alive, particularly in the case of disappearances like that. You still could have the hope, say, in the case of prisoners of war or people missing in action, that the person may be alive, may be in a prison somewhere.

    So it's not something different. I would say it's part of the experience.

    CHAIRMAN KASS: Michael.

    PROF. SANDEL: I found this a bizarre story, and I found the woman's quest odd and lacking in resonance.

    I think she was misidentifying though a properly placed concern. The real issue this raises, as I understand it, is whether and how human life and identity are embodied. And so the woman in the story had an intuition that the identity of her husband is embodied, situated in the world.

    Her mistake was to identify his embodiment with his organs. Gil, I think, was right to speak of the locus of the human presence, but I think it's a mistake, and it was this woman's mistake, to assume that the only locus of human presence is in the organs. I think it's an overly narrow, excessively biologistic understanding of embodiment, the embodiment that constitutes the human situation.

    So, for example, if she were writing letters not to the recipient of the heart, but instead to the occupant of the house that she and her husband lived in and raised their family in, that would have resonance, if she were begging to see that house, to enter the house where they had dwelled.

    That would be, I think, more resonant because it would better capture the locus of human presence. It would better gesture toward on aspect of their embodied human situation. It might be a house. It might be a village. It might be a place where they went on vacation or a beach where they had walked.

    All of these, the impulse to return and to give expression to what Paul called the "nostalgic grief," would be less bizarre in any of those settings, I think, than to try to seek out the organ.

    So the moral of the story, the broader moral of the story, I think, is right, that the human situation is essentially embodied, but the particular way she tried to grope to express this embodiment was bizarre, misplaced, overly biologistic.

    I think it would be more wrenching in many cases to sell the house than to donate the heart.

    CHAIRMAN KASS: To this?

    PROF. MEILAENDER: Yes. I just wanted to ask: but suppose the body had been missing. You know, that's obviously not this story. I understand that.

    PROF. SANDEL: You mean the whole body.

    PROF. MEILAENDER: Yes. Would it seem less apropos of her to go in search of the body than to go on to visit the house?

    PROF. SANDEL: I would find it less odd than what she did, yes. I would find that less odd.

    PROF. MEILAENDER: Well, and maybe if that were the case, it would make even more sense to go look for the body than to go visit the house?

    PROF. SANDEL: That depends. I'm not sure. Not necessarily.

    PROF. MEILAENDER: I mean obviously a life is a complex interaction of nature and history, you know, body and the lived history of the body, buy I'm not sure I want to buy that overly biologistic description because I don't think the problem is that she's looking for the body rather than, you know, the house or the seashore or something like that.

    The real problem is whether it's his body that she's looking for. I mean, I think that's really the underlying issue.

    CHAIRMAN KASS: Can I also interject something to draw you out, Michael?

    I mean, if one reads and rereads, one would pick up all kinds of little clues of this sort, but let me give you one passage from which it actually gets there, puts your ear to the chest.

    "Oh, it was Samuel's heart all right. She knew the minute she heard it. She could have picked it out of a thousand. It wasn't true you couldn't tell one heart from another by the sound of it. This one was Sam's. Hadn't she listened to it just this way often enough? When they were lying in bed, hadn't she listened with her head on his chest just this way and heard it slow down after they had made love? It was like a little secret that she knew about his body, and it always made her smile to think of the effect she had on him."

    And she also claims earlier — I'm not saying that this is correct, but this is not a biologistic sense of that, but it has a special marital meaning as the heart in poetry always does.

    When she says also, "It was my heart." She speaks about it in the proprietary sense, that it hurts to donate, but it's some other way — I think she's also saying his heart belonged to hear in a nonbiological sense, but in a human sense.

    PROF. SANDEL: Well, I would have two reactions to that. First, I didn't find that a moving passage. I thought it was kind of treacle, overreaching sentimentality on the part of the author to strain to make precisely this case.

    And the proof of that is that it only works given the heavily sentimentalized metaphor of the heart. Imagine reading that passage if she were in search of the kidney.

    CHAIRMAN KASS: It couldn't be done with the kidney. The kidney doesn't move.

    Sorry. I'm indulging myself. Who — Rebecca, Bill, and Janet, I think, is what I have.

    PROF. DRESSER: One thing interesting about this is it's really not a doctor's story. It's a story about a patient and a member of a patient's family. So I don't know if it's a typical doctor's eye view of the world. Everything is about me, or I don't mean to be critical, but it really was about these two individuals who had a brief contact with the medical system and now they're kind of left on their own and how do they handle these things that are lingering?

    But what I was interested in was her sense that she was owed an obligation by this recipient of the heart. It was her heart to give. I think it's referred to as her property, and she wants something in return.

    Does he owe that to her? He really has, you know, a sense of privacy, I think, that's being violated. And I was thinking about how uncomfortable it must be in some ways to receive this, especially this special organ, from someone you don't know. It's this incredible intimacy, and on the other hand, it's a total stranger. So you almost don't want to let that person in because it seems very threatening in a way.

    And so he was trying to keep her away, this person named Pope, and I'm not sure if that had significance.

    But so she goes into his medical records to find out where he is and then starts badgering him, and she wanted something in return. And I was thinking about this in relationship to this issue of paying for organs. I mean, she wanted some in kind compensation.

    And is that somehow more justifiable, ethical for her to feel that kind of entitlement than it would be for her to say, "Well, you should" — maybe she's lost a major source of income. So the recipient should help her out in that way.

    What were the ethics of her behavior toward him?

    And also the transplant system in some paternalistic way imposes this rule that the donor's family and the recipient should not know each other, and I believe sometimes there's a time limit and then they can get in touch, and sometimes they don't want to disclose identity at all.

    And that's imposed based on the judgment that, well, that's better for everybody if we have this rule. And is it really better? It wasn't better for Hannah, but it might have been better for Mr. Pope. I don't know how he feels after this incident, whether he feels a sense of relief or a sense of giving that maybe made him feel better. I don't know, but those were the thoughts this triggered in me.

    CHAIRMAN KASS: Bill Hurlbut and then Janet.

    DR. HURLBUT: I want to pick back up on what Leon was saying a minute ago. There are a few little clues in this story that — I don't mean to make this more abstruse than it needs to be, but there are things that stand out.

    There's a moment where it says, "Besides, she wanted the time to think, to prepare herself like a bride."

    And then when she's listening to the chest, it says, after what Leon had read, it says, "And now it was no longer sound that entered and occupied her, but blood that flowed from one to the other, her own blood driven by the heart that lay just beneath the breast." And in a sense she's born through this.

    I wonder if maybe there's a meaning in this story that is below what we've been discussing thus far, which is sort of the obvious of individual discontinuity, if maybe this isn't a reference to the deeper question of generation and the deep mystery of material being — of seeds, of gleaning.

    In a sense, it's obviously drawn from the Book of Ruth, which is a profound story in the Bible because it's in continuity with the lineage of David and to a Christian, that means the lineage of Jesus.

    And it's obviously about Ruth cleaving toward Israel instead of the Maobites, and a particular perspective on the profound meaning of what life is.

    In that sense it seems to me this might be a story about grief and grace and material existence, where within this mystery of death there are these seeds where Ruth went forward with life and raised up children to her deceased husband, and in this story she receives her life back and goes forward.

    She feels the blood flowing from one to the other, and blood in the biblical tradition is life, continuity, and the key might be that where it says that she lay on his naked torso, the man, and that the chest upon which she had laid her head was a field of golden wheat in which at this time it had been given her to go gleaning, another reference to seeds.

    I just throw that out as another layer of the meaning of embodiment.

    CHAIRMAN KASS: Thank you.

    Janet, go ahead. I'll hold back.

    DR. ROWLEY: Well, I don't have any great words of wisdom. I have to say that when I read the story, I did think it was rather odd. I guess my only comment for the discussion around the table is that I think we're being too judgmental, and it certainly is extremely unusual in terms of both her request and her need for closure and for closure to come in this particular fashion.

    On the other hand, the story indicates that at the end and after being able to listen to her husband's heart, she did achieve closure, and so that whether one wants to expand this to a larger context that the end justifies the means, I'm not sure, but at least as the story plays out, there is a good end.


    DR. FOSTER: I think there are some redeeming themes in the story, if I were going to teach it, and I'm not. But one of the things that struck me as important here was Mr. Pope. He illustrates the capacity for the human heart and mind to change.

    At one point he says to her, "Goddamit, leave me alone or I'm going to call the police," and then he changes and invites her to come. It's a model; I think it is a model that in most humans there is a kindness gene. it may be turned off; it may be inactive, but it can be turned on.

    I mean, I think Thomas Aquinas would have said that that's natural and intrinsic to the human character. In some sense to me one of the most important things here was Mr. Pope. He feels her pain, and he finally invites her to come, and that is humanity at the highest level.

    I mean, her pleas were sort of a transcription factor for his kindness gene, and he brings her in. He has a heart to changes. She probably thinks it's because it's Samuel's heart, but it's his heart, I mean, his mind and soul that changes, and that's an encouraging thing.

    And, secondly, at the end it moves more from kindness to a kind of love, not an erotic or romantic love, although they were very careful to worry about the wife being away, and there was the human need to touch. I mean, I don't want to talk about that, but people want to be touched, I mean, when they're wounded and so forth, and her head on his chest and his arms around her illustrate this need.

    But when she goes to leave, something has happened to him more. He has a kind of live. He says, "Hannah, will you want to come again?"

    And the author says how soft and low his voice. Now, I believe — I don't mean to imply, as I say, any kind of an attachment to Hannah, I mean, in the sense, but his kindness and seeing her response to that moves him to more kindness and a sort of love. It's a sense the noncontingent love of agape. He wants to care for her and to do for her what is best.

    And in one sense it's sort of a like for like. I mean, he gives love, and then he receives love. That was sort of Kierkegaard's like for like or Ralph Waldo Emerson said, you know, when one does a kind deed to another, one is instantaneously enlarged. I'm paraphrasing. He didn't say it exactly that way.

    And when one is demeaning to another, one's soul essentially shrinks instantly, you see. So it's sort of touching to me to see Mr. Pope here, and in one sense he is not bizarre. I mean he is human at the highest level in my view, and that's one of the most redeeming things about it.

    PROF. MEILAENDER: Can I just ask one question?

    DR. FOSTER: Ask any question you want.

    PROF. MEILAENDER: This is a terrible question to ask, in a way, but is it really that Mr. Pope changes or is it just that Mrs. Pope goes away?

    DR. FOSTER: Well, I don't know if you want me to answer that. I don't know. I mean, it's just a story. It's just a story. I mean, it's a surgeon who writes a story, and he's a surgeon who doesn't like doctors, and so he puts this — I mean, I don't know how you could say that, but when you come to a story, one brings into it what one sees, and that's what I see.

    Janet says we shouldn't be judgmental. I don't think we ought to be so judgmental. I think it's okay to say that she's bizarre. I think she was bizarre, but I mean, we wouldn't say that publicly to her.

    But it's also judgmental to assume that when somebody does good that it's for some ulterior motive, that his wife has gone away, Gil. I mean, I think that is, if that's what you're saying, that that's a judgmental —

    PROF. MEILAENDER: I just mean that I think it was Mrs. Pope really who said, you know, "Goddamit, I'll call the police." I think that was the real voice behind that letter.

    DR. FOSTER: I see. Well, that may be.

    I want to make one other point before the session is over, but I don't want to —

    CHAIRMAN KASS: I'll put you back on the list. Do you want to do it —

    DR. FOSTER: No, I don't want to do it now, but I want to come back to the essential question of what this heart means, and what the self and body is just from the practical experience of one who has taken care of the dying and seen it many, many, many times. I do want to make a comment there.


    DR. FUKUYAMA: Well, I just interpreted that quite differently, and I don't think it's a matter of my putting my judgment you know, about these characters into the story. I would say this has got to be the intention of the author.

    There is a sexual element that runs through the whole story that I think is really clear, and it spring, I guess, from the following: that the one thing that strikes me as implausible about the story is that when you're 33 — Hannah is supposed to be 33 — people at age 33 do not think about their bodies. People start thinking about their bodies when things start going wrong, except in one circumstances: when they feel, you know, erotic attachment, and then you suddenly realize that you're not just this healthy, disembodied person, but you're actually got organs and, you know, touching and physical contact is important.

    And it does seem to me that there is, you know, a clear sexual byplay going on in the whole relationship of her to the heart and to Mr. Pope, and I think that's absolutely right, that it was Mrs. Pope, you know, that wanted to keep him away, and that's why she was the one that answered initially, and he, you know, invites her back and wants to know, you know, whether she would like to see him again.

    And so I think that the motives here are less this kind of pure Christian love. I mean, I really do think there's a kind of eroticism that, you know, kind of runs through the whole thing that may explain some of her loss and also the metaphor about the harvesting of the wheat and regeneration.

    I mean, you know, that's the point of sex, right? Is to somehow replace, you know, the human race, and I would think that in those circumstances there's this curious mixture of this sexual compensation for death because reproduction in a way insures that we go on.

    Just one other point. I do think that this preoccupation with the bodies of the dead is a kind of cultural thing. This is something that Paul had mentioned. I just throw in my own anecdote.

    You know, they cremate everybody in Asia, and so when you go to visit the grave, there's no pretense that that's, you know, somehow the person there.

    My father, who was born in the United States and really grew up very American, happened to pass away in Japan when he was on a tourist visit there, and so he was cremated in Japan, and you know, I flew out there, and had to go through the ceremony that I just found horrifying, but apparently all Japanese do it, which is that once you come out of the crematorium, the family members then actually then they spread the ashes out, and then each family member is required to, you know, take some of the ashes and deposit it in the air, not all of them, but some of them.

    And you know, I hadn't been expecting this. I didn't like going through it. You know, but in reflecting on why this custom exists, you know, it seems to me it's probably to tell the family members: look. This is all that's left. That's all that's left, and you know, in a way, get over it. You know, it is precisely that message.

    And you don't even put all of the ashes in. You just put, you know, some of them. I don't know. They throw the rest of them away, and so it is a kind of, you know, I guess, cultural recognition that the person is not, you know, in whatever it is that's left over that's put into the grave. It's, you know, the family members, the spirit that has departed and is now somewhere else.

    And so I guess I was a little bit Alfonso and Michael in finding that this is — you know, that particular emphasis on the body and, in particular, that organ was a little bit — I found it something not terribly resonant.

    CHAIRMAN KASS: Mary Ann.

    PROF. GLENDON: Well, I wanted to say something about Mrs. Pope, too. The marital imagery in relation to the heart gets very complicated here. There's a way in which Hannah thinks that this heart is hers, but in the correspondence, Mrs. Inez Pope quickly shifts to being Mrs. Henry Pope, asserting her unity with the current possessor of the heart.

    And I do agree with Frank and Gil that there is a sexual rivalry, a kind of a contest going on over this man and the heart.

    The other thing I wanted to point out because it's relevant to our discussion yesterday is this sentence, "You, Mr. Pope, got the heart or, more exactly, my heart as under the law I had become the owner of my husband's entire body at the time he became brain dead."

    Well, there's a certain way in which you could find legal cases about dead bodies that would support that assertion, but many of the courts are careful to make a nuanced distinction that just because you have, as next of kin, you have the right to dispose of a body or to make certain decisions about the disposal of the body, that doesn't mean that you are the owner of the body or that a human body can be property.

    So this idea of property and bodies that's so pervasive in our thinking even creeps into this story, but it's not necessary to the legal analysis of one's rights, and you see, but once you propertize things, it's very easy to slide from I own into I have the right to do whatever I want with. And that's not obviously necessary, but it's a common elision.

    And we see in this painful case of Ted Williams, here we have apparently a son who has made a living and supports memorabilia related to his father, wanting to continue the memorabilia business with the DNA of his father, and you have it, of course, brought into the courts in the way everything is, but I hope it's not going to be decided over who owns Ted Williams' body, but rather who has the right to make certain decisions.


    PROF. GEORGE: The Bible in the Book of Genesis talks right in the creation narrative about the man and the woman becoming of one flesh, and this concept of marriage as a one flesh unity of two persons, that two persons become one. The man and the woman, the husband and wife become one is carried on really throughout the Bible and also in less developed form in the classical tradition, both in the Greek philosophers and in the Roman jurists, although that claim especially with respect to the Greek philosophers is somewhat controversial.

    The idea that two could become one in this way, that there would be a unity of bodily — unity that marriage is, in some fundamental sense a bodily unity, makes sense only if persons, whatever else they are, are their bodies rather than something abstracted from the body which occupies or is somehow mysteriously associated with the body, like a consciousness inhabiting the body or even a spirit inhabiting a body, but detachable from it in the biblical tradition.

    In the broader tradition in the West, embodied both in the cannon law of the church and in the civil law what marriage is is not simply an emotional unity of two persons which is somehow enhanced by their bodily association or by the sexual dimension of their marital relationship, but what marriage is is a bodily union, the sexual dimension of marriage, sexual union being the biological matrix of a more comprehensive union of the persons as a whole, that is, in their biological, emotional, dispositional, even spiritual dimensions.

    And in any human activity, engaging any activity has an experiential component, but the activity itself is more than simply the experience of the activity, and this is true of marriage or anything else. And we can understand that if we use Michael Sandel's late colleague's, Robert Nozick's thought experiment about an experience machine. Think of some activity, hitting 70 home runs, for example, in a season or hitting home runs.

    It would be possible to imagine a machine or a pill that would give you the experience of hitting home runs, but you wouldn't actually be doing anything. Imagine yourself as no success being a brain floating in a tank having the experience of writing the great novel or of hitting home runs or of marriage, but not actually doing anything.

    So that while the experience of human activity is an aspect of the activity itself, the activity isn't reducible just to the experience, and it would be odd and mistaken to want just the experience without the activity.

    And as I was reading this story, it struck me that Mrs. Owen is interested, among other things — and I agree with Janet that she's interested in closure — she's interested in getting together with Mr. Pope to have an experience that she had had before. Now, this is not the experience of sexuality. I don't think that there's an erotic idea of a relationship here between the two.

    But in the language that Leon quoted, it seems clear to me that she would like to have the experience that she had with her husband in their most intimate moments of marital unity, that experience of lying on his chest and hearing that heartbeat, as it did in those moments after sexual unit.

    And while I confess that like so many of you, I was struck on reading this story that this behavior and desire on her part was very bizarre, on reflection I don't find it out of the realm of possibility for understanding or resonating with the use of Michael's term. I did feel some resonance as I could understand what she was after.

    However, the reality is, the truth is that that experience which could be replicated of hearing that heartbeat, feeling — at one point she says, "Thus she lay until her ear and the chest of the man had fused into a single bridge of flesh," one flesh unit, "a single bridge of flesh across which marched one after another in cadence the parade of that mighty heart."

    She's getting some of the experience that she had with her husband, but of course, she can't have the reality. The experience is not the reality. She knows that in the end. She's not interested in coming back, even though Mr. Pope has invited her if she wishes to do it again.

    She understands now fully the distinction between the two, but I think it was that powerful experience that was the particular thing that she was here after.

    CHAIRMAN KASS: Comment to that?

    Well, let me put myself on the list unless I've missed someone who has been waiting.

    I would grant that the behavior is odd, and I would also grant that in some way one should face the facts, all of that. But the more I read it and think about it, the more Selzer has, I think, seen rather deeply into a certain kind of disquiet for both donors — of the deceased donor we don't speak — but the surviving spouses of donors and the recipients that come from treating this act especially with the heart, I think, as merely a biologistic transaction.

    And the dream that she has of the two men lying side by side with empty chest cavities and the life of the one being moved to the other, the doctor says it's just the respirator keeping him alive, but after all, there still is the beating heart which is symbolically moved from the living to the otherwise dead.

    The medical picture of that has a kind of symbolic reality, even if it isn't the ultimate truth.

    And when she begins by saying, "Dead is dead," but then begins to wonder partly through the experience of the butcher, then the discussion about the resurrection of the flesh, and the question is what would be resurrected, and then ultimately with this dream that comes after the storm and the rain, with the kind of revelatory moment, there's something about it that makes me say she's actually closer to some truth about the experience of transplantation.

    You have to block out certain kinds of things that happen on heart transplantation in order to treat it simply in terms of its wonderful practical result. There are certain kinds of things that have to be blocked to the side.

    And Renee Fox and Judith Swazey have written about transplant and other people have actually called attention to these deep emotional and psychological things that are part of the picture but tend to be ignored if one is just looking at the functional aspect of it. That would be the first point.

    And, therefore, I sort of, although this is bizarre, there's something about her quest that makes sense to me. There's something about the quest symbolically, not as a deed. That would be the first point.

    And then it seems to me something really marvelous happens at the end, and here I would pick up with what Dan says. When she comes — Henry Pope has out of a kind of act of sympathy yielded to this request. It's necessary that Mrs. Pope be away, but he's yielded to it, but he doesn't like it at the beginning.

    And the language is the kind of language almost of a prostitute. "It's your show. How do you want me? I suppose you want this off." That's the kind of language.

    He's uncomfortable by this. "Where's your stethoscope?" All of that.

    Something happens to him in the very end here, and the question is: what is that? And could one say that the recipient, though he didn't know it himself, also needed this?

    The most astonishing thing to me is at the end that his arm is around her, and that she was trembling. Now, is that an act of Christian charity or has he somehow momentarily become husband-like to her as a result of this sort of one flesh union, not of sexual concourse; the union of his heart driving her blood is the way the language is put?

    Now, it's a story. There's a certain poetic license here, but the question is: is there something in the act of the exchange of organs, wonderful that it is, wonderful that it is, but that involves an overlooking of what it means to be in your own body in which one needs finally to acknowledge in order to really make the experience whole?

    I'm not sure I'm putting this very well, but I think in some way maybe both of them get a kind of closure as a result of this thing.

    I wonder, Dan. This is partly to follow up on your thoughts about his wonderful conduct, but a transformation that he didn't expect. If you want to comment or maybe you want to wait.

    DR. FOSTER: No, I mean, I think you and I both agree that the most profound thing that happened, I focused on Mr. Pope primarily. I think she got closure, too, and you want to make it a mutual thing. I want to look at it in a higher level of not as a husband that you and Bill sort of talked about, but at a higher level of love.

    But I do think that that's a central point for me.

    CHAIRMAN KASS: Please, Rebecca and then Gil.

    PROF. DRESSER: I just wondered. Does this make you think that the general rule that recipients should not know donors and donors' families, that it's wrong? I mean should we change it?

    CHAIRMAN KASS: You know, there's perfectly good reason for it, and in a certain way you could — the reason for the rule, the reason for the rule I would say is a testimony to the truth of what I've just said. Not that you should break the rule necessarily, but the fact that this is a kind of intimate transaction in which people probably are better off not being reminded of the possible confusion, and that one should leave it as a gift of life, but without necessarily getting involved with the giver in whose embodied life you are now sharing in some way.

    I mean, I don't know. It would be an interesting question. If your spouse had a heart transplant and you would be first, second, fifth, and tenth thing to say is how grateful one is that the spouse is still alive. Is it true as Alfonso said before that once you put the foreign organ in here, it is now in the integrated whole which is governed by the anima and so, therefore, it's no longer the part where it came from, or would it be simply craziness to say, "I have a relation. There's something of someone else's here"? Not that it would produce jealousy, not even that it would produce curiosity. Those things probably should be resisted, but the question is: are these parts simply alienable as mechanical parts might be or is there something here — has Selzer put his finger on something that is generally out of sight and yet very important?
    Gil, do you want to?

    DR. FOSTER: Let me just respond to one thing.

    CHAIRMAN KASS: Please.

    DR. FOSTER: There's one thing I haven't mentioned because the interpretation that I see is what I like there, but Mr. Pope may also have been informed by his surgeon, by his transplant surgeon, that this heart is not going to last forever. They don't last very long because you get disease and so forth. This is not like a kidney where you can go 35 years or something. It's not going to last all that long.

    So part of his transformation to sympathy and so forth could have been — I don't know this. I mean, it's just a story — but if he had been informed, he might have thought also — I mean, the transcription factor for his kindness gene might be that my wife is going to have to go through the same thing, and I hope that there's someone who will be for her what I have been for him — I mean for Hazel.


    PROF. MEILAENDER: Yeah, I just want to press a little bit on the implications of your comment, Leon, with which I do not particularly disagree. I mean, you recall I said I didn't find it bizarre in my original comment. I thought there was something understandable.

    But let's take seriously the sense that the act of giving the heart requires the various participants as it were to try to bracket some fundamental human responses involved in almost alienating oneself from one's own bodily presence. Might one not conclude from that that it's a bad idea to do this?

    You know, insofar as it requires the suppression of a kind of fundamental human response that we should not encourage someone to do that?

    I mean, I'm in considerable sympathy with your kind of take on it, but we might want to think about what the implications of that are.

    DR. KRAUTHAMMER: Can I pick up on that?

    CHAIRMAN KASS: Please, Charles.

    DR. KRAUTHAMMER: Because I think what's really bizarre is transplantation. We've been a species for hundreds of thousands of years, and we haven't had humans walking around with the organs of others except in the last 50. Now, that's very new.

    And we remember the excitement when the first transplant in South Africa, and that was considered magical or mystical, and over time, of course, we've gotten used to it, but I think the questions raised by the story and by what you said, Leon, which is that we really have to consciously exclude certain feelings that we have about this when we transact the transplant is true.

    We transact it because it saves lives, and that means it ought to be done, but there is a cost, which I think you were hinting at Gil, and that cost is that we are transgressing certain boundaries of, if you like, individual embodiment.

    Now, in the case of transplant, the cost is minimal because that the person is already dead, but we know what the temptations are: to speed up death, to prepare the dying.

    In China they use prisoners, condemned, and they remove the organs before they are executed. So it's what we've been talking about in our previous discussions.

    Once the lines are crossed, other lines are more easily crossed, and it's because in doing the good in transplantation, we are consciously pushing away the things that make us uneasy about this.

    And I think that the next step in this and the reason that we've been struggling with cloning and these related issues for the last month is because the logical next step is to take the organs not from the dying, but from new human life, which is where you go with this.

    And that's why I think it's important at every stage in the process, every stage has in transplantation which yields unequivocal good. We ought to stop and look at the cost and think of where it might lead.

    CHAIRMAN KASS: Gil, did you want to come back?

    PROF. MEILAENDER: No, I'm on the same wave length in a sense. I mean, I just think that the more we're persuaded by the truth of the line that you are pursuing, the more troubling the whole operation becomes.


    PROF. GEORGE: I'd just ask the question for Charles.

    Isn't there a clear line though between extracting organs from the dead and removing organs from the living? I understand what the Chinese do, but they have gone over the line precisely in killing to extract the organs.

    DR. KRAUTHAMMER: But let's remember that our definition of death has changed in the last hundred years and the last 50 years, and in part to accommodate our need for organs.

    It's brain death, which makes sense to us, but that's a new idea, and once you move the very idea of death in that direction, when exactly is a patient brain dead? Well, I mean, that's sort of a decision the doctor can make hour to hour, and you might want to make it earlier if the organs are fresher.

    So it leaves you open to blurring and crossing lines.

    PROF. SANDEL: Could I put a quick question that can be answered by Leon or Charles?

    Does your view about the natural impulse to human embodiment and bodily wholeness suggest to you that those religious traditions, going back to Frank's point, that believe in cremation tug against or in some way violate that fundamental human impulse about embodiment?

    DR. KRAUTHAMMER: No, I don't think so because I think you can have a belief system in which when death is a reality and a finality, the body becomes less important.

    In our tradition, the Western tradition, it remains rather important, which is probably why it strikes us as more difficult and problematic.

    PROF. MEILAENDER: Could I make one comment on that, too? I mean, I don't think that they necessarily do, but on the other hand, I want to be cranked down. You know, I mean, that's actually significant to me. I'd like it done, and I'd like my wife to listen to it happen.

    PROF. SANDEL: Let the record reflect that, Mr. Chairman.

    CHAIRMAN KASS: Yeah. We should wind up in just a couple of minutes. I have Paul. Again, I want to go last. I want to put one more word in, too.

    Is there someone else who wants in the queue before we break?


    DR. McHUGH: I only have a few things to say after those wonderful comments, and actually there are three things.

    First of all, I was there when they did the first transplants at Brigham, and if you remember, they didn't take them from the dead. They took them from a twin, and it was a really — I can tell you it was a really scary time because you were trying to keep the patient who was sick with the kidney disease alive, and you were really worried about what was going to happen to this healthy person.

    And so I am agreeing with you, Charles, that it was a boundary period, and we should reflect more about it even today, but I remember the nervousness of us interns and house officers as we were running about.

    The second thing I wanted just to make a little point as I was reading along this. You know, as I say, I take care of a lot of patients with grief, and I wondered to myself, "Now, would I tell her to go and find that guy, or would I say, 'Now, wait a minute. That's not going to be a good thing for you?"

    Because my function, after all, is to help rehabilitate patients who are suffering from this business.

    But that brings you back to the whole idea of what do you mean by grief, and grief is a natural sequence that seems to go pretty similarly from case to case depending upon the loss.

    On the other hand, it is an arena of meaning, and we doctors don't deal well in meaning because you kind of put a law to it. And so in the end I thought one of the things about this story, like all stories, that might be helpful for psychiatrists is that it might enlarge your scope as to what kinds of behaviors you would permit, let's say, rather than encourage.

    I would be very worried about encouraging this woman to do this because I'm afraid that the success would lead her to come back again and again, and the fact that in the end that she says she's not going to do that, I kind of held my breath a bit about that.

    But I just wanted to finally come back to the idea that this a deeply Hebraic story, I believe, with this deep sense that we sometimes lose that the distinction in scripture is often not between spiritual and material, but between vitality and weakness, and a spiritual man is a man of spirit, full of life and vitalized by the power of God rather than etherialized.

    And finally, to come back in my work, one of the problems that we are facing with the idea that human kind could be looked at not that way, as an animated body, but a soul trapped in the body like a bird in a cage is one of the reasons why people come to us. They don't come to Hopkins anymore because I put an end to it, but they would come to Hopkins and say, "You know what? I'm a woman in a man's body, and you've got to do something about that. You've got to hack away at me."

    And that comes out of this idea that somehow or another, there's somebody inside that's different from what we are, and it's a problem, and it's interesting to track it back.

    And I think the Hebraic tradition wouldn't have anything to do with that, but I leave it to you to tell me.

    CHAIRMAN KASS: No, I certainly think that's right. Let me make just two points, and then I want to give Dan Foster the last comment.

    Charles is in a way right in saying, and it's partly what I've been pushing here, we did talk about the question of property in parts of the body and questions of modification, but in part one might be worried about that because one thinks of the degrading sale or one worried for other reasons about creeping commerce, but I don't think that one would begin to worry about commerce in the movement of body parts if one didn't have some prior at least minimal disquiet about the moving of the body parts themselves, even if it were done without money.

    And Mary Ann's suggestion that we might hear some time in the fall or have some discussion of legal systems where the ground for excluding bodies, the human body from the domain of what can be owned rests upon some understanding of that.

    And this is not to say that one has an objection to transplantation, but that one should understand it as having to overcome things which are ?- the question is whether the things that are disquiet bespeaks is simply the strangeness and novelty of it, as Charles suggests, or whether this is another one of those things where it's a clue to something about our identity and who we are that is at least being threatened, nevertheless that good may come of it.

    The second point I wanted to make has to do with something that Robby said, and it is, I think, probably Hebraic, as well. This is from the Book of Ruth. The remark, "Whither thou goest I will go," is said by Ruth to Naomi, when Naomi returns home, Ruth then and her sister both having lost their husbands and often, it seems to me it's being said as it's a sign of the friendship of women.

    But I think it' s probably truer to say that Ruth goes with Naomi as her daughter-in-law , which is to say as the wife of her now deceased husband and the whole trajectory of the story really is the levirate marriage and the raising up of seed to the dead.

    What this story adds to Gil's very fine opening presentation about whole and part and spirit and body is this thought, which until I read this story. It wouldn't have come home to me so powerfully. There is a way in which as embodied beings we're halves, and that it's a real question whether or not and part of the real difficulty for this woman is being unclear as to whether she's wife or widow. She cannot somehow go on, and that has something to do with the fact that — additional complication of what it means to be an embodied being is somehow to live in time and then be connected with generation and the missing half.

    If one wants to really think about bodily identity, one has to think about that aspect of our bodily identity which is tied to generation and, therefore, implies complementarity or something else and not just the individualistic view of ourselves top to bottom as, you know, what are we along, but the relational aspect is very powerfully presented.

    I'm sorry for that. Let me turn it over to Dan and then we'll take a break.

    DR. FOSTER: Well, I thought it was pretty good. What I'm going to say now does not mean that I do not believe that we're a whole. I'm trying to say that, you k now, all of us live in body. In some sense, sometimes we disagree with our body. I mean, I did not see the sexual connotation that Frank saw in here, and I don't need Viagra, but maybe I need something to increase my thoughts about sex. I don't know. Maybe we ought to do that. I don't know.

    We live as — I'm just kidding — we live as a whole, and sometimes we deny our bodies, and sometimes we enhance them. Sometimes we're weak, and sometimes we're strong, and so forth, but I want to talk about the end for just a second.

    I've hinted at this and said this before. I think death is always a serious event. Sometimes it's a blessing and sometimes it's a curse or a loss and so forth, but it's always a serious event, and I just want to share my own experience with this.

    Whether one is alone there or whether there is a group of physicians or family, there is that moment in death where everyone who is there knows that in an instant the person is no more. We oftentimes use the term "departed."

    Leon shared with me his presence at the death of one of his close friends, holding hands, and he and the nun continued to talk, and the nun didn't realize because of their conversation, and as I recall Leon's story, she said, "I think he's gone now."

    And Leon gently said — I think you can correct me — said, "Well, he left 30 minutes ago," or something. They were so intense in conversation.

    But there is a palpable sense that something has gone. The body is intact. I can take any part out of it and transplant it and it works. I mean I can take kidney; I can take cornea; I can take heart. It's in that sense still alive.

    I mean, it can't generate ATP and it can't sustain itself by itself, but it's there. But something is gone. It's like a breath of life has gone, and if you're there, everyone there knows it, and in every sense that I've ever been there, there's a sort of a silence and a sort of a reverence that that has happened.

    And so I do not believe that we are defined by our bodies. I think they're necessary to live, but they're not defined by our bodies, and that is what has led in many faith experiences the sense that I do not cease to be.

    Another way of saying this, you know, if Yogi Berra was talking, he would say, "It's not over when it's over." It's not over when it's over. I mean, that's the hope of humans, by the way. Gil wants to be buried whole because he wants that pitiful, old body he's got right now to still be resurrected.

    You know, I mean, I'm just kidding.


    DR. FOSTER: But the point, I'm trying to make a really serious point, and everybody knows it, and sometimes the eyes are closed and one is just comatose, and it just goes, but sometimes, not infrequently, before the death the eyes are roving of the person who's going to die. They're like this. It's like they're seeing something or trying to see something.

    I've oftentimes thought — I don't pay too much attention to near death experiences, people who, you know, have been resuscitated. They have these visions about — they say they're never afraid of death anymore and they may have heard music or all sorts. That's just a vision as far as I'm concerned.

    But you do symbolically have a sense that someone might be looking for something else as death comes.

    So I just want to say that I think it's a terrible mistake, and I agree with Frank. That's why I wouldn't think that I would be worried about cremation or anything else, because that's not me. I mean, whatever this breath of life is, that's me.

    At one time it had a body and now it doesn't, but I think it would be an error to say that one is only what these hands are, what this mind is, and so forth.

    So I just wanted to pass that on from experience. I probably — I mean, I've been there so many times that it never ceases to amaze me how everyone knows that the breath of life is gone. He departed, Leon said about his friend. He left 30 minutes ago.

    I hope you don't mind me sharing that conversation.

    So that's all I wanted to say at the end. I don't think that this part of this person's heart or anybody's heart is that person. I don't think that at all. I think that's my sense. I mean, I think that's itself a little bizarre to think that.

    So I didn't mean to say so much, but I did want to share this sense that there's something great that's not part of these hands.

    CHAIRMAN KASS: Thank you very much.

    DR. KRAUTHAMMER: Could I just add a footnote on this idea of the embodiment of the dead body?

    I read on the Net this morning before leaving that the Israelis apparently were going to put Barghouti on trial, there's a report that they're going to release him to the Lebanese and plus 100 live terrorists in return for an Israeli who had been kidnapped in the body of the three Israelis who had been kidnapped and killed in Lebanon a year and a half ago.

    I mean, the value that they and, I think, we put on the bodies of the dead is simply astonishing in this offer which apparently is reported this morning, which is so unbelievably one sided, I think is a testament to how much importance we put on the what's left of us even when the breath is gone.

    DR. FOSTER: Well, I would say in the conversations that we've been having about cloning and so forth that the dead body is symbolically very meaningful to everybody, and it's due high respect for what it once was, and that may be something of great value, but it depends on where you're coming from. I mean, if you believe that that body is all there is and that there was nothing that was in that body, then, of course, you may want to say, "Well, if I've got to return, that's all I've got, and what I also don't have is any hope, I mean, you know, in death. What I also don't have is any hope in death."

    CHAIRMAN KASS: We should stop. I simply want to say that, I, for one, am very grateful that that breath of life that is the soul of Dan Foster is connected to a tongue.

    We're adjourned for 15 minutes. We'll say 10:35 we'll come back.

    (Whereupon, the foregoing matter went off the record at 10:18 a.m. and went back on the record at 10:44 a.m.)


    CHAIRMAN KASS: Could we return please and begin?

    Frank, is the metaphysical group going to return?

    This session is devoted to taking stock of where we are and beginning to talk about some future directions.

    Just some general considerations, a reminder of some things that are at least under consideration, and then I think a free ranging discussion that would help us think and make plans for the future.

    The first consideration, this Council by executive order is in existence till the end of November 2003. That's 16 months, something like that, and it's unlikely that we can do more than a couple of things and do them well.

    So there are lots of things that would be worth doing, but we'd have to make some choices of more important and less important. And there are some things worth doing, but might not be worth doing by us, given our strengths and talents and the like.

    Second, there is a consideration that for some people the issues that we should take up are things that bear upon immediate policy questions. There are other people who think that what's most important for a body like this to do is to lay the groundwork for various kinds of questions that might be coming and bring to public view certain important considerations that are insufficiently attended to.

    Enhancement, for example, would be one such topic.

    And I think we've learned from our experience over the last six months that it matters if you're trying to conduct a fundamental inquiry whether or not there is something else going on around you that has a kind of urgency in which there are various pressures brought to bear upon what we do.

    This is a Bioethics Council, and as indicated at the start, ethics doesn't simply stop at the doorway to politics and policy. That has a deeply ethical dimension.

    But we also have to be very careful as to whether or not we get caught up in things that are around us and simply respond to those kinds of pressures.

    At the moment we have not been asked by the President to tackle any particular topic, though that could come. And I do know that that part of the executive order which asks the Council to explore the human and moral significance of things is taken seriously there. They're not necessarily simply interested in advice on this or that practical question, but with a view to this field as a whole and the fact that its issues will be with us for a long time, we do have the green light, I think, to find our way on the basis of what we think is either most urgent or of the greatest weight.

    That, by way of some general considerations. I may have left out some others.

    We have, as we were doing the cloning work, we have embarked on at least three other possible lines of inquiry. One was stem cell research, and we had yesterday our second — our fourth session on stem cells. We had the two presentations from the scientists, Dr. Gearhart and Dr. Verfaillie. We had Dr. Outka's presentation and discussion on the ethics of stem cell research, and yesterday Dr. Baldwin on the implementation of the policy.

    We've had two sessions on enhancement, one prompted by the working paper of the staff, and then the one we had yesterday afternoon, and we've had under the broad heading of regulation, I think, four sessions, one, the general discussion prompted by the readings of the material that Frank provided from his own writings.

    At the last meeting, two sessions with Lori Knowles and Dr. Baird on the international models, and then since we're treating the question of the patenting. Actually maybe I'm wrong. Maybe that's five sessions.

    Well, we've had two sessions, several sessions on patenting, which does also deal with the general question of if not regulation, at least the interface between research or science and society applied not to this particular technology or the next, but to things in general.

    Yesterday there was a discussion that suggested one might enlarge the patenting question either in two directions, one in the direction of science and commerce, the other in the direction of property and the body.

    So there was the possibility of thinking about patenting by itself, patenting in relation or as an instance of and in relation to certain other things, and further questions developed along the lines of if one wanted to pursue the question of enhancement, to what extent is the sports example a useful instance?

    Does one want to think about enhancement? And I don't know whether, Dan, your suggestion that we take up germ line modification was with a few to the question of enhancement or simply the question of remedying single gene mutations, but Dan had brought that up as well.

    That is simply by way of reminder. I have a couple of thoughts myself, which I'll at least put out there. I would say that a bifurcation of our efforts, to think about maybe two large projects if we could figure out how to do them well might make sense. I'll simply speak for myself, but I'm really open to suggestion.

    One, it's very nice to be liberated, I think, simply from the question of the ethics of the means and to try to think about some of the difficulties that come from where these powers are to be used.

    And I don't like the distinction between therapy and enhancement as the best way into this subject, but that's onto something. If you go past the remedy for the treatment of individuals with known diseases, one has wandered out into unchartered territory. No previous council has ever really taken this matter up.

    It is not an immediate policy question, to say that somebody is waiting to hear from us on this, but I think that in some way this might be the largest question where much of the greatest disquiet about what might be possible, and we could talk it through and maybe even address some of the disquiet and tone it down and also provide some ways of thinking about it.

    So the use of these powers beyond therapy, I think, is one large area which would be unchartered and might be useful.

    And the other large area has to do not with this or that particular moral question, but with the institutional questions. Ted Friedmann finished his talk yesterday with a kind of plea that we give some attention to what might replace these various ad hoc commissions that meet and talk. This has been Frank's talk from the day of the first meeting.

    And that seems to be a way that at least in the majority recommendation talked about the importance of beginning to think through ways of surveying this entire field with a view to what might be done not just by way of commentary of advisory bodies, but for some institutions that could see to it that the large questions we carry about are even considered, monitored and perhaps even regulated for.

    But that's at least where I would be inclined to start, but before we sort of broke for the summer, I thought it seemed to me we should hear from everyone and see whether we can formulate some useful plans between now and September when we come together.

    So with that rather long-winded introduction, please. Mary Ann.

    PROF. GLENDON: Well, on the enhancement/therapy topic, I would hope that if we choose to pursue that that we'll let it open out into the questions that are inevitably involved of allocation of resources, that is, allocation both of the human resource represented by scientific energy and creativity, but also allocation of scarce economic and medical resources.

    CHAIRMAN KASS: Frank, please.

    DR. FUKUYAMA: Well, I'm going to sound like a broken record on this, but, as your summary suggested, you know, my position has been fairly clear that I just think that councils like this are not going to have very much impact unless they try to concretely discuss ways of institutionally embodying, you know, ethical concerns into routine policy making.

    And as the presentations on the HFEA in Britain, you know, last session, and the Canadian regulatory structure that they're putting in place indicated all of those bodies had their origins in a group like ours that issued very concrete, you know, a permanent oversight board that took into consideration ethical concerns.

    And I think that all of these issues that we're talking about at a fairly abstract level having to do with enhancement, you know, versus therapy and so forth can be given a much more concrete focus if it is put in, you know, the context of, you know, actually institutions and how they would grapple with these sorts of problems, and I think that's one point.

    The second point is if you look at the two in the majority and minority positions that we adopted or that are contained in our report yesterday, both of them make regulation central to, you know, their outcomes.

    The first position says the moratorium, among other things, will be used to think through a regulatory structure.

    Position two says we are not going to proceed with research cloning unless there's an adequate set of regulatory safeguards in place. So both of them, you know, push us to move down this road, and I would be loath to slough this off. In fact, in some of our discussions about the final report, I mean, there has been some suggestion that maybe there should be a separate, you know, commission or something to look at these issues.

    And I feel quite strongly that that should be our duty, that we should really use the year and a half left in the life of the Council to look at this seriously.

    And this does not preclude by any means, you know, ignoring any of the, you k now, ethical issues or have this rich kind of conversation that we had this morning, you k now, about specific issues, but I do think that it would help to focus the discussion very much if we looked at it in these very practical terms.

    And, finally, I want to also endorse, you know, Dan's suggestion from yesterday that there is a very clear line that moves from cloning to preimplantation genetic diagnosis and screening ultimately to germ line, and all of those, I think, could be dealt with institutionally by the same institution.

    I mean, if you set up a regulatory system to put some rules around embryonic cloning, that same institution will function to approve procedures in pre-implantation diagnosis, and it can also make rules for germ line, and so I think you will not only deal with the short term problem of how you proceed on cloning, but you will also set the foundations for issues that you can see either here, now, as in the case of pre-implantation diagnosis or over the horizon, you know, with the germ line, and you'll kill all three of those birds, you know, with a single stone.


    DR. McHUGH: I want to second what Frank is saying and put it in another way. The appreciation of one group of ethics councils after another often turns on a discussion of various means that are employed presently in medicine.

    And remember our Council is a Council on Bioethics, and therefore, ultimately should be talking about the ethics of ends, as well as the ethics of means, and I can tell you knowing ethics councils in various hospitals around the country, the issue of ends is very seldom their matter. They function very often accommodatively towards the culture within which it lives, and I believe that a regulatory body or a larger element of our country's government that is speaking now about these matters would deal with issues of means, broadly speaking in relationship to the things which Frank has mentioned, but would gradually develop a coherent discourse on ends that I think is necessary.

    CHAIRMAN KASS: Let me ask on the — sorry. Gil? No, please, go ahead.

    PROF. MEILAENDER: Just a couple of comments. One of the things I've thought about, and I'm uncertain about this, and it's undeveloped, but it seems to me at least I've begun to think there are some topics that you can deal with better in some settings than others. There are some topics that you can deal with well if you're teaching a class and you have a semester to kind of unfold the whole process of reasoning so that when you get here, you know, you refer back to all sorts of things that you've done and so forth.

    We don't work in that way and meet in that way, and the enhancement topic worries me for that reason. I may just reflect my own difficulties with it. I just think it's a conceptual bog. I mean, I think it's very difficult really when you go to work on it.

    You know, it's easy to talk about the distinction between therapy and enhancement. It's very hard to make it out in conceptually clear ways, and I just register the worry — it's no more than that — but the worry that we might trap ourselves in something that we can't dig our way out of in the kinds of meetings that we have.

    I would rather see us take a piece of that topic if we wanted, and I mean, actually Charles had a number of meetings ago suggested germ line. When we had one of those sessions on enhancement, he had suggested that, and Dan has come to that.

    In other words, if you focused on one little piece of it, of course, some of the larger conceptual questions would arise. You'd have to deal with them, but not as if you were writing the book that finally clarified the concept of enhancement, but you know, in the context of a particular thing.

    I just have this strong feeling that we might have more success if we approached a topic like that in that way. So that, on the enhancement topic.

    With respect to the regulation topic, not as close to my heart as to Frank's, but it's fine. I have no objection to it.

    There, again, I think a discussion might be most fruitful if it weren't a discussion in the abstract or were a discussion of a proposal perhaps formed by even a subcommittee of this body or something like that rather than just sort of flailing around thinking about regulations so that we could see what a proposal might look like and begin to think more fruitfully about it.

    Because I think there are some serious questions about exactly what kind of a regulatory body one would want, whether or how responsive to citizens we wanted it to be, for instance, and so forth that I'd want to pursue at any rate.

    And then finally, I want to say I have thought for some time — I mean, it's not on your list and I guess it's not on anybody's list right now — but I actually think that the whole issue of organ donation, transplantation, sale of organs, which there's been a lot of stuff coming back about just recently again is a very important topic.

    There's a lot to be learned about what actually goes on in the industry. It opens up into some of those wider questions that people were interested in yesterday, but it still remains. You can keep it focused on a question like sale of organs, for instance, which implies all of those issues about the commodification.

    I just think that it's that kind of topic anyway that it seems to me that we're looking for that can be focused and narrowed while it still has the broader implications, but I don't think we're going to write the book about the broader implications on any of these.

    CHAIRMAN KASS: Well, let me ask just to get clarified on this topic of germ line modification. What does it actually mean to the people we're talking about? What are we talking about here? What's the recommendation for this as something that we should take up?

    Could someone specify what this slogan means? What is it?

    Maybe I should ask Dan what he had in mind when he suggested it was the natural–

    DR. FOSTER: Well, I think that if you look at gene therapy, there's very little controversy in terms of, let's say, therapeutic somatic cell therapy. In other words, as Ted was talking about yesterday, you know, you have a disease, adenosine deaminase deficiency, and you've got a severe combined immunodeficiency disease where the person has to live in a bubble or something like that; that you can treat the one patient.

    We've been doing it by injecting the enzyme, but now it looks like there's been a repair which is genetic. So that only affects that one person. It changes that one person's life and has no implications for further generations, either good or bad.

    But on the other hand, if you have a defect which is not a polygenic defect, like sickle cell anemia, for example, and you decide, well, we'll just wipe this out by correcting this in the gonads of carriers of the gene, then that has, unless this dies out in some sense, that has implications in perpetuity, and you know, there's a sense that somehow in evolution the sickle cell gene occurred to protect against malaria because malaria, you know, was the widest cause of acute death.

    And even though this gave you painful crises and constant anemia, that was better than dying acutely. Nature said this is better than dying acutely. So in one sense, because in African Americans this is a terrible, terrible disease, you'd say, "Let's wipe it out."

    But then, on the other hand, you might have to think about, well, are we going to then have resistant malaria, and so we're going to wipe out Africa not just through AIDS, but through malaria, in other words.

    So there are implications of passing this down that I think we have to look at, and I think that I have concerns about some of this. So that's what the thing is.

    I mean, gene therapy has some acute dangers. If you give too much of the virus, like the Philadelphia experiment and so forth, you can kill somebody, and it might be in an individual because genes talk to each other that putting in and repairing one gene defect, cystic fibrosis or whatever, that it might have effects to bring out or to, you know, other genes.

    But it's at least in one person, and the risk is limited to that.

    Now, you could also look at the germ line enhancement theories. I mean, I think Janet's point is that intelligence and things of that sort are so complicated that it's not likely to be realistic in the short run, but that's the general thing, that a single gene therapy is good or possibly bad for a single person, but does not implicate the race or something like that.

    CHAIRMAN KASS: Is this — again, just for the record, these are speculative possibilities that people have talked about, but if someone where to say, "Well, look. We have pre-implantation genetic diagnosis." That's something else, right? That affects the individual that's there and gets us into some of the usual kinds of questions.

    But how realistic and how likely is it that we're going to see, let's say, in the next decade or even two any serious attempts at human germ line modification?

    Anybody interested in doing this? And who would give them permission? I mean, Janet, do you have some — what would you say?

    DR. ROWLEY: Well, I've expressed my views several times, both in the media and outside of it, that I think this is extremely unlikely that we will have effective germ line gene therapy that we would then have to worry about in terms of its impact on both society, on individual children who might undergo such treatment, and that there are certainly other issues that are I would have thought more pressing than this, and even to take up Dan's view.

    So, you know, you think about gonadal treatment of someone who's a carrier of sickle cell disease, and then you try to think, well, how would you do that, and you know, you replace all of the oocytes in the female or all of the spermatogonia in a male, and if you don't replace them all, then there is a certain probability that the defective sperm or defective egg would actually be the one that would give rise to an offspring.

    So I mean, I think this is so unlikely that we would be wise to wait on a topic like this until it became more of a reality.

    CHAIRMAN KASS: Bill and then Frank.

    DR. KRAUTHAMMER: Could I make a response to that? Is that on the same subject?


    DR. KRAUTHAMMER: Germ line therapy would be a subset of enhancement. It's serious, permanent enhancement, and if it's assigned to fiction right now, and I defer to Janet on this, I still think we could contribute to the question for the future by looking at enhancement that can be done now, which is non-germ line, which could be pharmacological as we discussed yesterday.

    In other words, as you said, Leon, no one has really seriously looked at enhancement, and we could contribute to the future debate about germ line by focusing on the current debate about doable enhancement through drugs and other means or somatic genetic therapies.

    So I think that would be a way to go about it. We wouldn't have to focus on germ line, but the implications would be obvious and clear for whenever it became doable and necessary.

    CHAIRMAN KASS: I'm not sure, by the way, Charles, that I would say that if I understood what Dan was saying that you would want to describe germ line gene therapy as enhancement. You would rather treat it as very sophisticated preventive medicine, right?

    DR. KRAUTHAMMER: Well, but I don't think that would trouble — well, perhaps it would, right.

    CHAIRMAN KASS: Well, it troubles Dan because it's —

    DR. KRAUTHAMMER: But not for ethical reasons. For safety reasons.

    CHAIRMAN KASS: But those are, as I reminded weeks ago —

    DR. KRAUTHAMMER: No, I understand.

    CHAIRMAN KASS: — it's an ethical question whether you would —

    DR. KRAUTHAMMER: It is, but —

    CHAIRMAN KASS: — inflict this on generations to come when you don't know what you're doing.

    DR. KRAUTHAMMER: But it is less interesting because the answers are much more obvious. If you can do a lot of harm for eternity, you probably don't want to do something. So in terms of therapy, I think it's one thing. In terms of doing it for enhancement, I think it makes it all the more difficult an issue.

    But I don't see why we have to focus on that if it is going to be so speculative. We should focus on what is doable today.

    CHAIRMAN KASS: Bill and then Michael and then Rebecca.

    DR. HURLBUT: Well, just one little thought on this. There is a practical dimension to our asking this fundamental question of how doable is germ line enhancement or even therapy at this point. There's quite a lot of discussion in the popular press and serious books, such as one with a title that includes "post-humans," have been written on this subject, and I think it would be a service to our society if we were to take the insight that Janet has mentioned that a lot of our images of how genetics work are simplistic based on simple Mendelian models, based on simplistic notions of disease, genetic disease, not acknowledging there are actually syndromes, that there's pleiotropy, which means — for those of you not scientifically trained, pleiotropy means one gene does many things in the body. It's not a one-to-one correspondence between genes and traits, and polygenic inheritance, which means that most traits result from many genes operating together.

    If we could acknowledge those two facts, bring them out into the context of the discussion and make a limited report to the public on the realistic possibilities and concerns on this issue, we would at least do a service to the general level journalistic discussion and maybe help keep science from a bit of bad press.

    I think there's a practical dimension that I think the scientific community doesn't take seriously enough in America, and that is the degree to which the popular mind can turn against science. And look what's happened in England with genetically modified organisms. It's a significant social factor.

    I suggest that we might want to think about for this issue and maybe several others, that we should request of the National Academies of Science some kind of reports on a few of the scientific groundings of the ethical issues we want to discuss.

    Perhaps we should ask them to give us a report on what the realistic possibilities are for germ line modification and then on to the question of whether human beings could realistically enhance themselves.

    CHAIRMAN KASS: By the way, one other general consideration I should have mentioned at the start and it's pertinent here is that one of the other things that should govern our choices is whether there are other people and groups even better situated and actively involved in this.

    And I do know that some of these questions are part of the thinking for the next phase of the genome project, and particularly the ethics component of this.

    So that's not to say that we shouldn't do this, but we should find out certainly how they plan to proceed along these lines, and I wouldn't be surprised — are you not active there, as well, Rebecca?

    Yeah, maybe when you get the — do you want to speak first?

    PROF. DRESSER: Sure. Actually, there have been some really good reports done recently on this. Well, I think they're good. AAAS has done a report on germ line interventions, and there's a book that I think is coming out this fall by people in that project. That's a very good resource.

    The RAC did an excellent report on prenatal genetic modification where they explore some of these questions, and it's really great science. I think that was '97.

    So those would both be good things to look at.

    I think another thing that affects my thinking on this is that I think we made an implied promise in our report to address some aspects of reprogenetics, and I feel some obligation to do that. Maybe it doesn't have to be the next thing, but this morning I tried to make a little outline of what an enhancement project might look like, and maybe we could talk about a few different contexts: the pharmacology, pre-implantation genetic diagnosis, and then germ line.

    I mean, there's a little bit of a progression there. One of the people say the allegation is that the demand for germ line modifications will be enhancement because if you're focusing on single gene diseases, pre-implantation genetic diagnosis in almost all cases will provide a way to avoid having an affected child, and you can still have a biologic child.

    So the notion is that the real market will be in enhancements, and then that would bring in an opportunity to talk about commercial pressures and industry influence and that sort of thing.

    So perhaps to meet Gil's concerns, focus on two or three kinds of practices, one that goes on today, one that, pre-implantation genetic diagnosis, goes on today, but it's still fairly new and it will be expanding in terms of conditions that will be the potential justification for performing it, and then a future oriented practice where people don't have their established positions, and there aren't as many stakeholers. So it's easier, perhaps to influence future policy.

    And I think I agree with Bill. It would serve an important education function because I do think there's an extreme amount of misinformation out there about the possibilities.

    And then there could be an ethical analysis of, you know, the concept of enhancement and using those particular practices as the focus and try to expand that analysis beyond what exists in the literature now.

    We were talking last night about trying to take a virtue based analysis approach to this. That would be a little bit different from what's been done.

    And then you could look at policy and regulatory approaches. You could talk about — I think professional regulation is going to be an important part of any judgments, you know, restraint in terms of how these things are used.

    Individual judgments, how to try to influence the decisions that people make about when this is appropriate to use. Even insurance company reimbursement, what should be covered, and then some sort of regulatory agency that perhaps should influence policy.

    So it might be a vehicle to try to address some of the other topics that we're also concerned about, and make it a little more focused.

    What the genome people are doing now is they're just trying to put together their five-year plan, and they are discussing the material they will put out in terms of grants, the requests for proposals and the ELSI program, the ethical, legal and social implications program invites grant proposals in those areas. So they're not doing a project. They're just saying these are the kinds of things we're interested in, and individuals may decide to do projects on this, but I don't think that they'll be working through these issues in the way that we would.

    CHAIRMAN KASS: Thank you very much. I have Michael and then Frank. Please, Michael.

    PROF. SANDEL: I think we have three topics here, and as far as major projects, it seems we have time to do two major projects, but there may be a way to give attention to all three, and so here I have a concrete suggestion.

    On the question of coming up with a proposal for a regulatory system that would be institutionalized, it seems to me that's something that this Council can develop, but I don't think it's the kind of topic that lends itself to the kind of free ranging ethical inquiry of the kind that we have had and that we're really constituted to engage in.

    There are a small number of our colleagues who are experts in this area, which is really to do with the details of institutional and structural regulation. There are broad, normative questions, and Gil mentioned the question of how democratically accountable.

    But what I propose we do there since it doesn't lend itself to sustained kind of ethical discussion is to have the people who are experts in that, namely, Frank and Jim Wilson and Rebecca, work with the staff to develop a proposal, a concrete proposal for a regulatory structure, and to devote a session to it here to discuss it.

    But the developing of the proposal is not really something that we as a body are that well equipped to do. Let the people who are experts in that come up with a proposal, a concrete suggestion. Let's devote a session to it, and we may find that that's all we need or if we need to follow up, then that's always open to us.

    That would enable us to devote our attention to the two big ethical questions that are really on the horizon and that we are equipped as a body to do.

    One of the things that this Bioethics Council is able and ready to do really is to address, as you said, Leon, not just the bioethics of ends — of means, but also of ends, and that's really the distinctive contribution that this group can make. And that suggests two topics.

    One is enhancement. And I think we can do that because if we ignore enhancement, really we're ignoring the central question about the ends of medicine and science that's before the country now and in the next decades.

    I think we can address it in a way that makes it manageable, and I liked Rebecca's suggestion that we divide it into three parts: drugs, pre-implantation diagnosis, and genes, genetic interventions.

    And I think we can do that if we take those three categories, do it in a way, and it will help keep us from veering off into the science fiction aspects, but the moral — the ethical questions about the ends are going to overlap those three categories, and I think that would be a fascinating discussion, but also really initiate a public debate on this question that is looming larger than any other if we're talking about the ends of science and medicine.

    And then the second, which also has to do with ends, has to do with property in the body and commerce in the body. We don't need to take commodification as a whole, but if we focus on commerce and property in the body, we can do it with two categories.

    One can be patenting. What should be patentable subject matter? And the other can be market exchange. What should be bought and sold?

    I think we should deal with both of those, not just one of them because the issues will cut across both, and we can take up those two sets of questions under property in the body with respect to organs and also genes and eggs and sperms and stem cell lines, and maybe there are some others.

    The issues may vary as we look to one or another of those categories, but that's, I think, the kind of debate that we're equipped to engage in and the kind of debate that's addressing really the question before the country.

    So I think we should go with our strengths and with the questions that are really looming largest, and that would be enhancement number one, property and the body, number two. And we can do regulation, so to speak, on the side.

    CHAIRMAN KASS: Response? There's a kind of specific proposal here that needs reaction. So Janet.

    DR. ROWLEY: Well, I obviously have great concerns about dealing with a topic that calls itself enhancement. I do want to take exception to Michael's description of medicine as focusing on enhancement because I view medicine as focusing on the treatment and prevention of disease.

    Now, to that extent that you call that enhancement, but that's not what the general population means by enhancement.

    PROF. SANDEL: No, I agree with Janet, and if I gave that impression, that isn't what I was suggesting.

    DR. ROWLEY: Okay.

    PROF. SANDEL: I was saying that we should focus on what the ends of medicine are not to be, and I wasn't equating —

    DR. ROWLEY: Okay. Well, then I misunderstood. But I guess faced with choosing between your two suggestions in terms of, say, priority because they shouldn't be taken up simultaneously, I would be in favor of the second of your options and maybe putting the first one aside for further discussion and consideration.


    DR. HURLBUT: I just want to respond to that. I completely agree with you that medicine is about healing, but let's face it. It's getting very hard to define what healing is in this day and age. I think more and more people are turning to medicine with expectations of the metaphor more of liberation from everything that is not just disorder, but is constraining to life.

    I mean, if you look at — I hate to bring this up again. Leon might frown — but contraception set a new paradigm for medicine a few decades ago as interfering in natural life connections. Now, good or bad, that's not the point.

    The point is that is was a change of paradigm, and that is about to echo forward in all sorts of levels as we gain mastery over biology to where medicine will become used for achieving the purposes that people think is in the trajectory of their life expectations or desires or ambitions.

    I think we shouldn't underestimate that, and one of the things, Rebecca gave an order of topics and it started with drugs. I think maybe it would be better to go pre-implantation diagnosis, genetic enhancement, cellular enhancement, and then drugs.

    But the reason I say that is because we are at the cusp of an astonishing revolution in pharmacology, and particularly I think Paul will back me up on this, psychopharmacology. We have now capabilities for combinatorial chemistry that are synthesizing and screening drugs by the hundreds of thousands in a month where it would have taken ten years to do the same amount a few decades ago, and the number of protein targets that the genome project is revealing to us on which we can target pharmaceutical agents is increasing exponentially.

    It's said that up to now we've had 400 to 500 protein targets. These are the operative sites that our pharmaceuticals operate on, most of them. We've got only four or 500. Now we're adding some people estimate 1,000 a year and expect to increase that by 1,000 a year for ten years.

    Now, you can see how that would be an exponential number of sites of intervention. So we're looking at a transformed medicine, I think, and I agree with Michael. We need to get to these issues. The public is thinking about them, and they are to some extent realistic.

    By the way, half of those pharmaceuticals being developed are psychopharmaceuticals.


    DR. McHUGH: Well, I found this conversation between the four of you on the other side extremely useful along the lines that I also said at the beginning, that we need to move towards a study of the ethics of ends, and I pick up with Janet and Gil and appreciate the problem of the enhancement arena simply because the arena goes at a level beyond disease.

    I talked to you at the beginning of this about the elements of treatments that are involved in the treatment of behavior, treatment of personality and even treatment of the story of a person's life itself, each one of which medicine has a place to play in, but makes the problem that Gil first said he worried about, that we might lose our focus.

    On the other hand, I think I absolutely agree with Michael that this is a vital arena for us to study, and so I would like to suggest to go along with what Janet is saying that maybe it would be good for us simply to get our further feet wet into this, to begin with the issues of property and the role of the body, the issues of the body, the things that we, as Michael said, trade in the body and even do to the body because we say it belongs to us.

    And after that, as we got that kind of experience of discussing these things, then we could turn to the issues of enhancement in much the way it's been said here, and I think we would just be a better prepared group to come to that.

    But these are the two domains that I would support us to go in as absolutely correct. I very much support that.

    I do though want to say with Michael that even though it might only take a session or two on what would constitute a proper regulatory body, I think we will have left people believing that we have not let the other shoe drop since we've been saying, all of us, saying that this regulatory body is necessary, and that in that way we would not only be speaking to ourselves, but speaking to the scientific community that could come to us and support us from their suggestions as to what they would be willing to live with in regulatory terms.

    So I think all I'm doing is repeating what's been said by the four of you on the other side, but I want to appreciate the concerns that you show and the sequences that we would follow would be maturing for us as a discussant group.

    CHAIRMAN KASS: Thank you. Charles.

    DR. KRAUTHAMMER: I like the scheme that Michael outlined. I'm troubled by one part of it though, as I have been by Frank's descriptions of the regulation.

    I'm all for regulation, and I'm all for establishing a regulatory structure, but it begs the question what are we going to regulate which is a huge issue. I mean it sort of encompasses everything that we're talking about.

    So it's not as if it's just a technical question. I think the technical question obviously is doable. A subcommittee working with staff would be a great idea, and I don't think there'd be a lot of discussion. People know what regulatory structures work, which ones haven't. There's history on this.

    But the real issue in regulation is what are you going to regulate. We just spent six months on whether or not and how to regulate cloning, which is one issue out of hundreds.

    So I'm not sure it will advance us a lot if all that we establish is a chart with the lines of authority. We'd have to discuss what's going to be regulated and to what extent.

    So I think in other words, I'm not sure it's disposable unless it's a merely technical issue of establishing a body. If it's larger than that, it's a topic that could consume us for 18 months.

    PROF. SANDEL: But that might be a reason to have them do the technical work and then address the thing after we do these two topics having to do with ends.

    DR. KRAUTHAMMER: But it's not clear that you can do a generic box structure and then apply it to whatever you decide you're going to regulate later. It's sort of chicken and egg here, and I'm not sure how you go ahead with it.

    Perhaps the regulation part ought to be the last thing that we do at the end of our term when we've looked at what we decide has to be regulated.

    PROF. SANDEL: Yeah.

    DR. KRAUTHAMMER: Cloning and sale of organs and patenting and gene enhancement or whatever enhancements, and then say, well, these are the new issues of the new medicine. Here's the structure and here's how it would do it.

    Does that sound okay to you, Frank?

    CHAIRMAN KASS: Well, Frank, go ahead.

    DR. FUKUYAMA: Well, I think what Michael said is perfectly right. I don't think this Council can just take up this issue without any preparation, and so actually my thought was that the extremely able staff of the Council, which was able to come up with this thick report on cloning in six months could come up with, you know a similar draft document that wouldn't just deal with a narrow technical issue, but would actually lay out a series of choices in terms of regulatory options.

    For example, do you want to just regulate cloning or do you want to spread it to regulate the whole of IVF and, you know, reproductive medicine in general?

    I mean, so there are a lot of choices that the staff does not have to take a position on, but at least those kinds of choices could be made.

    And I would agree that, you know, the way I would envision this is that, you know, the staff go to work. I'm happy to work with them. I'm sure Rebecca and Jim Wilson will as well.

    I'm trying to get foundation support to basically be working on this, you know, to mobilize a bunch of people to work on this here in Washington anyhow in the next couple of years, and to come back in maybe nine months with a draft document.

    But I guess what I don't want is just that it be one of these tabs, you know, in one of the briefing books that we discuss for one session. I mean, what I imagine is that it will be like the cloning report. I mean it will be another major, you know, kind of product that will come out of this Council toward the end of its existence.

    PROF. SANDEL: Then for the reason Charles raises we have to discuss the ethics of each of the practices that would be subject to the regulation, which suggests it should be at the tail end of this because we won't have delved into all of those topics.

    CHAIRMAN KASS: Yes, and there's, first of all, the subject matter question, and there's also a question of if one wants to offer suggestions that might, in fact, be taken seriously. One really has to be dealing and having a fair amount of input from the people whose activities one is threatening to regulate, and that means, in part, the scientific community, but it also means the industry because the academic scientific community regulates itself in a variety of ways.

    And that means if one wants to try to be helpful here, one really has to think about arrangements that would produce the incentives for everybody to play rather than to treat this as police work. That's not a modest undertaking for, you know, armchair guessing. That means sitting down with people and doing it thoroughly and carefully.

    It can't come out as the end product without an awful lot of work in advance. The importance of it I recognize, but one needs to go — even to get started on it, one needs, you know, a serious working document on what it would mean to do this right and not simply to call for doing it without having sort of laid that out.

    And I'm not sure that the staff at the moment has the expertise in this area. The staff has a willingness in this area, but it would have to be if we were going to do this, either we would have to go and get some particular additional staff to work on this or we would constitute a subcommittee of the Council that staff could assist in the preparation of something like that.

    But unless I misunderstand our resources, you can't simply say, "Go and design alternatives that we can then talk about." I mean I think you really have to — I mean, I'm not telling you anything you don't know.

    You're setting up a year long or two year long intense study of this for that reason, and maybe we could work with you in that group.

    PROF. SANDEL: Yeah, some of this could be done in the work of Frank's group, and then you could connect it to the staff.

    CHAIRMAN KASS: Yeah. Gil. We're going to bring this to a close because I don't want to keep the public session waiting.

    Please, Gil, go ahead.

    PROF. MEILAENDER: Yeah, well, I just note with respect to this, I mean, it's not impossible for a body like this to commission work —

    CHAIRMAN KASS: Absolutely.

    PROF. MEILAENDER: — from others, too. I mean, so it doesn't have to be a subcommittee of us or the staff. We can do that.

    The larger point, I still would like us to think — I'm not sure that I have the same — let me put it this way. I'm not sure that I have the same notion of what we're best equipped to do. I have to say the last six months has been a sobering experience in that regard, and I think we should think about that.

    I mean, we tried to study and speak almost simultaneously in the last six months. We were talking and writing at the same time. I would just like somebody, you or somebody, Leon, to think about whether that's really the best way to proceed.

    And I'm not persuaded that it is. That's all, and to start on another big project that we did the same way, well, I would just want us to think about that before we did it.

    CHAIRMAN KASS: A couple of comments, and then we'll — Charles.

    DR. KRAUTHAMMER: I was just asking what's the alternative to studying and speaking?

    PROF. MEILAENDER: The alternative is to study for — I mean, one can study for a long time before one tries to speak or one can say at the outset, "This is what we're going to speak about. Now let's do it."

    You see, you can either think you know from the start what you want to say and then, as it were, "write" to it, or you can be entirely agnostic about what you want to say and just wait to see what emerges.

    And I'm not sure that one or the other of those might not work better for a body like this.

    CHAIRMAN KASS: Alfonso — do you want to respond directly to this?

    PROF. GLENDON: If I might.

    CHAIRMAN KASS: Please.

    PROF. GLENDON: Unfortunately I'm going to have to leave, and I do apologize for that, but I did want to say that I find myself in some confusion after having listened to the comments, and I'm mindful of the fact that we won't meet again for two months.


    PROF. GLENDON: And I personally would benefit if we could have an exchange of e-mails, if we could send in our thoughts.

    CHAIRMAN KASS: You read my mind. That was going to be the suggestion.

    This is an inconclusive conversation. There's lots here, but because I might forget after Alfonso speaks, an assignment, please. Follow up on this conversation from as many of you as can do this in the next couple of weeks, if we could have your thoughts about future directions, with the understanding, of course, that people think about things that happen in the meeting afterwards and might come to a different conclusion having thought about it.

    So please —

    PROF. SANDEL: Could I just say a quick word of reply to Gil about the virtues of studying and speaking at the same time? I think that the discussion now — Gil may feel that I should have studied more before speaking, but I think that part of the exploratory quality in the animation of the sessions we had reflected the virtues of studying and speaking and exploring even before we had sort of necessarily taken positions or thought things through completely.

    And so I think there is some energy in that kind of deliberation that I think has been a strength of the group.

    CHAIRMAN KASS: Thank you. Alfonso, and then we will break. Mary Ann, thank you.

    DR. GÓMEZ-LOBO: I just want to express a few perplexities. I'm not making any solid contribution here.

    It's clear to me that Charles is right, that any discussion of regulations and, therefore, regulatory authority has to come after we have a clear idea of what we're going to regulate and according to which principles.

    Now, the two great topics, enhancement and commodification of the body, with regard to enhancement, I must confess that I'm very much at a loss philosophically as to how to tackle the problem. That's why I kept my mouth shut yesterday when sports were being discussed because I really don't have a view of where the principles of the criteria are going to come from.

    And that induces me to think that it might be wiser to start with the discussion of property in the body because in a way, I think there are certain traditional principles that give us some sense of orientation.

    For instance, it strikes me as defensible that one should not, say, give patents over human beings, for instance, I mean, for reasons of human dignity, et cetera, et cetera.

    Now, that should extend to different ages, different stages, et cetera. So I confess that I see some way of pursuing that topic. I see no way at this moment of pursuing the enhancement topic, and that would be a good reason for me and for others to sit down and try to think about it in terms of ultimately what the ends at stake are, as Paul was saying.

    Thank you.


    CHAIRMAN KASS: Thank you very much.

    If we run over, and we've already run into the time that was allotted for the public session, I have four names of people who have asked to speak, and if Council is willing, rather than take a break, if we would allow people to come forward and speak.

    As everybody understands, people have up to five minutes for their comments. We have a microphone in the front, and I'd like to first call on Paul Tibbits from the American Diabetes Association.

    Is Mr. Tibbits here? Please, come forward.

    MR. TIBBITS: Chairman Kass and members of the President's Council on Bioethics, thank you very much for giving the American Diabetes Association the opportunity to testify regarding this very important issue.

    My name is Paul Tibbits, and I am honored to represent the association today. I am not a scientist, nor am I an ethicist. I do bring one important element to the discussion. I've had diabetes for 22 years, since I was six years old.

    As a person with diabetes, I am very proud to have the association speak on my behalf as well.

    The association sincerely appreciates the Council's deliberation, but we cannot support the recommendation that was issued yesterday. In fact, we are extremely disheartened that the Council has proposed to close off this avenue of research that holds so much hope for people with diabetes.

    Diabetes is a serious disease, killing more than 200,000 people every year. In the five minutes that I will spend testifying, four people will die from it. In the two days that you have been here, 2,400 people have died from it.

    For many of the 17 million American living with diabetes, the complications of this disease are already destroying their bodies. It is a leading cause of heart disease and stroke, as well as the leading cause of blindness, kidney disease, and non-traumatic amputations.

    This past April, the association issued a strong statement in support of therapeutic of cloning research. Like you, the association was careful and deliberate in its appropriate to this controversial issue, understanding the ethical and moral dilemmas surrounding this issue.

    The board ultimately decided that the potential benefits of therapeutic cloning to millions of Americans with diabetes were too great to ignore.

    As it became apparent that we risked losing this potential opportunity, we found ourselves in the position of strongly supporting the Human Cloning Prohibition Act of 2002 proposed by Senator Specter, Feinstein, Hatch and Kennedy, which would allow for the continuation of therapeutic cloning research.

    The association affirms this position strongly because this country is running the risk of driving important research overseas and placing critical breakthroughs outside of the reach of millions of Americans.

    Therapeutic cloning can be used in a number of ways to help people with diabetes if found to be successful. It can create replacement islet cells that can produce insulin. It can be used to create replacement tissue that would allow organs, such as the pancreas to once again function normally.

    The powerful advantage of these newly created cells is that they may eliminate the need for immunosuppressive therapy, a harsh and destructive regimen that is currently necessary with islet cell replacement therapy.

    Additionally, therapeutic cloning can improve the scientific understanding of how stem cells develop, thus speeding the search for new treatments and new cures for diabetes and other chronic diseases.

    The association believes that a moratorium is simply the practical equivalent of a ban. First of all, a moratorium will put potential medical breakthroughs on hold. Many of the patients suffering from diabetes do not have time to add four years to the already lengthy research process. For them such a delay simply means an earlier death.

    A moratorium also sends a wrong signal to scientists and researchers across the country. It will force some scientists to leave the country to pursue this research. It will force others into other avenues of research, essentially bringing such research to a grinding halt in America.

    This will make it extremely difficult to restart this whole process once the moratorium does expire.

    We have had a history of proposed moratoria in the past, such as for recombinant DNA in the 1970s. Instead of placing moratorium, however, the NIH and the FDA established regulatory bodies to regulate such research.

    As a result of these bodies and this research, a laundry list of life saving products was created, including human insulin that helped people like me better regulate their disease.

    A similar solution, one proposed in Proposal 2 by this Council, would be the best method for dealing with therapeutic cloning research. It should be allowed to continue, but the appropriate federal agencies should be given the authority to regulate such research within a very strong ethical framework.

    This would be the best way of addressing both the ethical and moral concerns, combined with the need to save and approve the lives of millions of Americans.

    Many prominent individuals support this position, including Presidents Ford, former Presidents Ford and Carter, as well as 40 Nobel Laureates.

    I would like to thank you again for this opportunity to testify. This is a critically important issue for millions of Americans with Diabetes, but also for those with a number of other diseases conditions, including cancer, birth defects, Parkinson's disease, Alzheimer's disease, heart disease, stroke, arthritis, spinal cord injury.

    The association would also like to extend an offer to assist the council or the President on this matter as additional deliberations are undertake. Please do not hesitate to call upon us as our country continues to consider this critical topic.

    And if you will permit me to, I would like to take a moment to speak as an individual with diabetes as opposed to merely representative of the American Diabetes Association.

    I wholeheartedly support there be cloning research for many of the reasons I just outlined. What I'm going to do with the following comments is focus on my personal view of this moratorium as an individual with diabetes.

    I think it's a so-called moratorium, so-called because it's simply a ban with a semantic alteration. As I listened to some comments from the Council yesterday, I heard three distinct reasons that were used to defend the moratorium. The first was to gain additional time to convince other people to oppose therapeutic cloning.

    In a sort of ironic twist, this is probably the reason I find the most refreshing because I find it the most honest and the most straightforward.

    What this ban will do, this moratorium will do is give opponents of this lifesaving process time to marshal their forces and their resources in this ongoing battle.

    Fortunately, there are those of us on this side who will continue to fight just as strongly for the pursuit of therapeutic cloning, and so the debate will continue, which brings us to the second reason that was said, which is that it would allow the country to reach a moral consensus.

    For me, this is probably the most disingenuous statement of all. Poll after poll has shown that the majority of Americans do support therapeutic cloning as long as it is strictly regulated. What other sort of moral consensus do we want to achieve?

    Additionally, has America ever reached true moral consensus on any controversial issue? Abortion has been legal for 30 years, yet a vocal minority still fights that legality today.

    Barring the recent circuit court decision in Northeast, the death penalty has been legal for most of this country's existence and still enjoys the support of the majority. Yet, again, a vocal minority fights to eliminate this practice.

    Clearly no moral consensus has been reached on these controversial issues. No reasonable person, and certainly nobody with the esteemed credentials held by Council members here, can truly expect that therapeutic cloning will be solved or will be the subject of moral consensus within four years.

    Finally, it has been said that a moratorium will allow us to gather more information. How will that happen? Through animal research?

    The history of clinical research is ripe with procedures that have vastly different effects on humans than on animals. The only way to truly learn is to hope that overseas researchers can provide us with some answers as they work on human cells.

    In hoping for that, unfortunately, we look morally weak. We admit that as a nation, we do not have the moral strength to defend the rights of millions of Americans with chronic diseases. Instead we allow others to do it. If the results are good, we jump on the bandwagon. If the results are bad, we decry their work with moral outrage.

    As I have said, a moratorium is truly a ban. It is a position that after more than 22,000 injections in my lifetime I find tremendously distressing, damaging and distasteful.

    I hope you can forgive the anger and bitterness in my comments, but I feel that this decision has taken a great hope away from me.

    If the administration issues this moratorium, it risks making an appalling mistake as it abandons millions of Americans.

    Thank you very much for your time and this opportunity.

    CHAIRMAN KASS: Thank you very much, Mr. Tibbits.

    Next, Dr. Joann Boughman, please. Please.

    DR. BOUGHMAN: Dr Kass and distinguished members of the Council, my name is Dr. Joann Boughman, a medical geneticists, Executive Vice President of the American Society of Human Genetics, which is one of the 21 member societies of the Federation of American Societies for Experimental Biology called FASEB.

    It's my privilege to provide a voice on behalf of FASEB's combined membership of over 60,000 biomedical researchers. We sincerely appreciate the Council's thoughtful deliberations on the issues of human cloning and the intense effort we know it required to produce your report entitled "Human Cloning and Human Dignity: An Ethical Inquiry," and I thank you this opportunity.

    FASEB has clearly stated strong opposition to human reproductive cloning or, in your terms, cloning to produce children. We agree with your conclusion that cloning to produce children is unsafe, morally unacceptable, and ought not to be attempted. We support your recommendation of a ban on closing to produce children.

    With regard to cloning for biomedical research, FASEB has asserted that scientists proposing well designed and responsibly conducted research using cloning techniques should be able to continue to pursue this work, including the use of somatic cell nuclear transfer, or SCNT.

    We agree with you that such research could lead to important knowledge about human development, and that it may result in treatments for many human diseases.

    It has been suggested by some that adult stem cells and fetal stem cells, like embryonic stem cells, including those derived from SCNT, may have enormous therapeutic potential. We as scientists readily acknowledge that there are many unanswered questions regarding the success of these proposed therapies produced from all of these techniques.

    It is precisely because the scientific community is dedicated to seeking answers to biomedical questions that we stress that research on all types of stem cells must continue so that we may determine which sources and types of stem cells hold significant promise for treating human disease.

    From the scientific perspective, halting this research process through a moratorium or an outright ban precludes the required scientific advancements to achieve success and implementation of these therapies.

    We, therefore, agree with the substantial number of council members recommending continued research with appropriate regulation.

    The scientific community clearly recognizes and, in fact, research scientists thrive on differences in interpretation of data, varieties of opinion and perspective, and healthy skepticism. The divergent opinions that remain among members of this distinguished Council, even after this group's considered deliberation and debate, in our view, serve only to highlight the need for more substantive information, not merely more discussion and debate.

    That information can be obtained only through the careful pursuit of responsible scientific inquiry.

    I would finally simply like to recognize that it is out of respect for human life and humanity that people dedicate their own lives to searching for ways to assist others so that they might attain, maintain, or regain their own quality of life.

    Thank you.

    CHAIRMAN KASS: Thank you very much. Next, Dr. Maxine Singer, the Coalition for the Advancement of Medical Research.

    Please, Maxine. Nice to have you with us.

    DR. SINGER: It's nice to see all of you. Good morning.

    I have come this morning to represent the Coalition for the Advancement of Medical Research, which is referred to as CAMR. I come in that capacity as a member of the Public Policy Committee of the American Society for Cell Biology. The Society for Cell Biology is one of the organizations in this coalition and was one of the founding members of the coalition.

    The coalition includes 70 patient organizations, scientific societies, universities, foundations, and individuals who have life threatening disorders and disabilities.

    And I'm here to present to the members of this Council a petition, which I think you've all received, signed by 2,164 teachers and scientists in medical schools and universities across the country. The signers come from all 50 states and include eight Nobel Laureates.

    The petition signals that a large group of informed medical and scientific opinion in the United States does not agree with the Council's call for a moratorium. The role of science is to discover answers to the unknown. The moratorium that a majority of the members of this commission support would, as your member Janet Rowley said yesterday, be nothing more than four more years of ignorance.

    A four-year prohibition on research in the United States has ramifications well beyond the four years. The next generation of American scientists would be discouraged from even entering the field of biomedical research.

    So it's entirely possible that a four-year moratorium could harm science in the United States for an entire generation or perhaps longer.

    The rest of the world, as the result of the moratorium, could very well bypass our country, which is currently the leader in biomedical research.

    That's the end of my remarks.

    CHAIRMAN KASS: Thank you very much.

    DR. SINGER: You're welcome.

    CHAIRMAN KASS: One more, Richard Doerflinger of the U.S. Conference of Catholic Bishops.

    MR. DOERFLINGER: I'd just as soon maintain separation of church and state.


    MR. DOERFLINGER: I had a prepared text, but I guess I'd like to depart from it to say a couple of words about what's just been said here.

    I think it's fair to say, and past witnesses before this body who are proponents of research cloning have conceded it as well; it's fair to say that there is nothing a four-year moratorium is going to prevent that would not be prevented in any case by the simple, practical medical and scientific problems inherent in trying to use embryonic stem cells from cloned embryos in human beings.

    We've heard from proponents before that we may well be talking about decades before any of this could be used in humans, and that may even be true of non-cloned embryonic stem cells because of the problems in tumor formation, chaotic growth when transplanted into animal hosts, and so on.

    In diabetes, in particular, we know that the latest trials and use of embryonic stem cells were a pretty abject failure. They produced two percent of the needed insulin. All of the mice died.

    Maybe that will be improved over the next few years of animal trials and maybe not, but it's certainly not going to be something that is prevented by any moratorium on specifically human cloning.

    There are many avenues that are moving forward now and already helping and in some cases seeming to cure people with diabetes, including the use of adult islet cells from cadavers, adult pancreatic stem cells, stem cells that produce insulin that are originally derived from other sources like liver, bone marrow, and skin, and even in one of the recent issues in the New England Journal of Medicine, the use of monoclonal antibodies simply to make the body's immune system stop attacking itself so that the body's own natural resources in adult stem cells can kick back into action and supply some of the needed insulin.

    All of those and more are far closer to helping human beings with diabetes than anything from embryonic stem cells or cloning, which so far have been a pretty complete failure in treating diabetes as fetal tissue from abortions was a pretty complete failure before.

    I think the moratorium, while it is certainly something that I welcome because I fear the alternative of complete inaction, I do not think it is a victory for either side. I think it does allow a great deal of research, including research in animal cloning and in stem cell research to continue, and it allows us all to continue to present our viewpoints and frame proposals.

    One thing I think it also allows us to do is to continue the debate about what one would really mean by even a ban on cloning to produce children because even though there is surface unanimity on this Council that such a ban is needed, there is on this Council and in Congress a great deal of disagreement on exactly what that could look like if one wants to avoid simply producing a ban that has the government mandating destruction of embryos while allowing them to be created by cloning.

    I don't think the proposal in the footnote of the majority report of the Council does the job. I think it may well reduce to the kind of ban that many of us find morally unacceptable or produce a great many serious loopholes.

    And so a four-year moratorium on all human cloning also provides us with an opportunity to figure out whether and how one would even want to ban reproductive cloning without raising more moral problems than one is trying to solve.

    The other reason for a moratorium that I think is very compelling is that if Congress and the nation do nothing, we are, in effect leaving the most irresponsible researchers in our society who we all deplore free to frame national policy on this issue by default, to simply present us with a fait accomplis.

    At least a temporary moratorium on all human cloning is urgently needed now to prevent this result, and I thank the Council very much for leading the way in proposing this.

    Thank you.

    CHAIRMAN KASS: Thank you very much. That exhausts the list of names that I have for people requesting public comment.

    Our next scheduled meeting is in September the 12th and 13th. School is out for the summer.

    Thank you very much.

    (Whereupon, at 12:05 p.m., the meeting was concluded.)

  - The President's Council on Bioethics -  
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