22nd Street, N.W.
Washington, D.C. 20037
Friday, July 12, 2002
COUNCIL MEMBERS PRESENT:
Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute
Rebecca S. Dresser,
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.,
Mary Ann Glendon, J.D.,
William B. Hurlbut,
Paul McHugh, M.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender,
Janet D. Rowley, M.D.,
The University of Chicago
Michael J. Sandel, D.Phil.
SESSION 5: TOWARD A "RICHER BIOETHICS": ARE WE OUR BODIES? DISCUSSION OF "WITHER THOU GOEST" BY RICHARD SELZER, M.D.
CHAIRMAN KASS: All right. Welcome, everybody. I hope people
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.
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.
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."
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
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
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
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.
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
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
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
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
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
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
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
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
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?
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.
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
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
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.
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.
CHAIRMAN KASS: Paul.
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
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.
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
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."
always say, "You have poor friends. Get better friends who can really
understand. Yeah, get better friends who can understand what you're going
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
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
CHAIRMAN KASS: Unless someone wants to respond directly, I
have Alfonso and then Michael.
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
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.
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
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
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
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
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
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.
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
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
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
PROF. SANDEL: That depends. I'm not sure. Not
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
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
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
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
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
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
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
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
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.
it's obviously about Ruth cleaving toward Israel instead of the Maobites, and a
particular perspective on the profound meaning of what life is.
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
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
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
CHAIRMAN KASS: Dan.
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
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
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.
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
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
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
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.
CHAIRMAN KASS: Frank.
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
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.
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
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
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
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
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
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.
CHAIRMAN KASS: Robby.
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
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
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
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.
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
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.
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.
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
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
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
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.
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
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
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
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.
CHAIRMAN KASS: Gil?
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.
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
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.
CHAIRMAN KASS: Robby?
PROF. GEORGE: I'd just ask the question for
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
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
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,
Is there someone else who wants in the queue before we
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.
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
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.
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
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.
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
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
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
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
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.
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
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
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
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.)
SESSION 6: AGENDA OF THE COUNCIL (DISCUSSION OF POSSIBLE FUTURE PROJECTS)
CHAIRMAN KASS: Could we return please and
Frank, is the metaphysical group going to return?
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
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.
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
That, by way of some general considerations. I may have left out
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
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
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.
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?
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
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
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
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.
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
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.
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
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
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.
CHAIRMAN KASS: Paul.
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
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
CHAIRMAN KASS: Let me ask on the — sorry. Gil? No, please,
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
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.
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
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
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
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.
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.
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
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.
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
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
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?
CHAIRMAN KASS: Sure.
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
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
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
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
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
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.
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.
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
So those would both be good things to look at.
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.
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
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
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
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
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
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.
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
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.
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.
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.
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.
CHAIRMAN KASS: Bill
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
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
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
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
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.
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.
CHAIRMAN KASS: Paul.
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
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
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
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
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
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.
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
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.
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
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
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.
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.
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.
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.
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
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 —
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."
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
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.
CHAIRMAN KASS: Right.
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
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
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
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.
SESSION 7: PUBLIC COMMENTS
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
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
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
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
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
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
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.
board ultimately decided that the potential benefits of therapeutic cloning to
millions of Americans with diabetes were too great to ignore.
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.
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
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.
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
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.
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.
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.
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.
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.
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
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
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
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
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
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
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
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
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.
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
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
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
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
We, therefore, agree with the substantial number of council
members recommending continued research with appropriate regulation.
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
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.
CHAIRMAN KASS: Thank you very much. Next, Dr. Maxine Singer,
the Coalition for the Advancement of Medical Research.
Nice to have you with us.
DR. SINGER: It's nice to see all of you. Good
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.
coalition includes 70 patient organizations, scientific societies, universities,
foundations, and individuals who have life threatening disorders and
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.
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.
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.
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
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
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
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
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
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.
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
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.
CHAIRMAN KASS: Thank you very much. That exhausts the list
of names that I have for people requesting public comment.
scheduled meeting is in September the 12th and 13th. School is out for the
Thank you very much.
(Whereupon, at 12:05 p.m., the meeting was