"This
transcript has not been edited or corrected, but rather appears
as received from the commercial transcribing service.
Accordingly, the President's Council on Bioethics makes no
representation as to its accuracy."
Ritz-Carlton Hotel
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, J.D.
Washington University School of
Law
Daniel
W. Foster, M.D.
University of Texas,
Southwestern Medical School
Francis
Fukuyama, Ph.D.
Johns Hopkins University
Robert
P. George, D.Phil., J.D.
Princeton University
Mary
Ann Glendon, J.D., L.LM.
Harvard University
Alfonso
Gómez-Lobo, Ph.D.
Georgetown University
William
B. Hurlbut, M.D.
Stanford University
Charles
Krauthammer, M.D.
Syndicated Columnist
Paul
McHugh, M.D.
Johns Hopkins Hospital
Gilbert
C. Meilaender, Ph.D.
Valparaiso University
Janet
D. Rowley, M.D., D.Sc.
The University of Chicago
Michael
J. Sandel, D.Phil.
Harvard University
INDEX
Session
5: Toward a "Richer Bioethics": Are We
Our Bodies? Discussion of "Whither Thou Goest" by Richard
Selzer, M.D
Session
6: Agenda of the Council (Discussion of
Possible Future Projects)
Session
7: Public Comments
Dr. Wendy Baldwin, Office of Extramural
Research
National Institutes of Health
Adjournment
PROCEEDINGS
(8:40 a.m.)
CHAIRMAN KASS: All right. Welcome,
everybody. I hope people are refreshed.
This morning's
opening session is on the subject of "Toward a Richer
Bioethics." I want to remind everybody that when we began, one
of our aspirations was to try to find discussion of bioethical
topics that didn't simply begin with the techniques, but began
with the goods in human life that we are eager to support and
defend and those aspects of human life that are touched by the
new biomedical technologies.
And at the very first
meeting, we discussed a paper by Gil Meilaender, which was
called "In search of Wisdom: Bioethics and the Character of
Human Life." And in that paper, Gil identified four different
themes that were somehow central to bioethics even though very
often they were somehow implicit in most of the conversations,
even if they were rarely thematically treated.
And the
first of those issues, themes that Gil mentioned was the theme
of unity and identity of the human being, and in that part of
the paper, he called attention to two questions about the unity
and identity of the human being. One is the question of whole
and part. I mean, do we somehow understand ourselves as a unity
or simply as an aggregate of removable parts, whether it be
genes or organs.
And the second question about the unity
and identity of the human being had to do with that aspect of us
which is hard to simply identify with body, which Gil called in
that essay "spirit."
And I'll just read the last
paragraph so that we'll have at least an echo of that
conversation. "It is fair to say, I think, that in reflecting
upon the duality of our nature" -- and this was at the
conclusion of the discussion of body plus this extra or addition
-- "we have traditionally given a kind of primacy to the living
human body. Thus, uneasy as we might be with the living body
from which the person seems absent, we would be very reluctant,
indeed, to bury that body while its heart still beat.
"In
any case, the problems of bioethics force us to ask what a human
being really is and in doing so, to reflect upon the unity and
integrity of the human person. We must think about the moral
meaning of the living human body, whether it exists simply as an
interchangeable collection of parts, whether it exists merely as
a carrier for what really counts, the personal realm of mind or
spirit, and whether a living human being who lacks cognitive
personal qualities is no longer one of us or is simply the
weakest and most needy one of us."
The story by Richard
Selzer, a now retired surgeon who practiced for many years at
Yale and a marvelous essayist and short story writer -- the
short story "Whither Thou Goest" is taken from a book of his
called The Doctor Stories. It gives us an opportunity to think
about those large questions with some additional complications,
since we are now dealing not so much with the burial of a man
whose heart is still beating, but the burial of a man whose
heart is still beating somewhere else.
And I think maybe
just begin with kind of an open-ended question. Do people find
this story bizarre, weird? I mean, what do you think of this?
Just to see where we are for openers.
PROF. SANDEL: Well, you said, Mr. Chairman,
that this story was a suitable reward for our good behavior. I
would say it was a reward for our
behavior.
(Laughter.)
DR. FOSTER: I wouldn't say that it was a
bizarre story, but I would say that a number of the elements in
the surviving wife are in my own experience unusual.
And
what I mean by that is in some places, the State of Texas, for
example, requires that one ask for organs for donations. It's
against the law not to do this. So physicians, we do this all
the time.
And my own experience is that many families
find as part of the defense against the loss of a loved one is
the fact that the loved one's organs have brought life to others
or sight or whatever. In some sense it says in this tragic
Samuel's death, it's a premature death, and it's what I would
call a theodicial death. That is to say, he was going to do a
good deed. He was a good Samaritan to fix a flat tire, but it
was a trap, and he was killed.
So that becomes either a
secular or a religious theodicial problem, a theodocy, an
expression, a death that entails not just natural death, but the
problems of additional suffering because it's premature and
happened to a good person.
Sometimes you get cynical
about that. My residents oftentimes say in the hospital, you
know, the drug dealer who's got endocarditis lives and the
intern who's wonderful dies. You know, so they sort of think
cynically that the good die and the bad live, you
know.
That's wrong. I mean, I don't think that that's the
case, but this was a theodicial death because it happened during
a good deed. And of course, if one is religious, then you know,
you shake your fist at God and say, "How did this happen?"
whether it's Auschwitz or Samuel.
But most people, in my
experience, feel that there's a redeeming component to the
death, even if one continues to grieve or be angry, if life
comes from it.
I was just thinking about that this
morning. Let me tell you one quick, little story. I was called
about a year and a half ago late one night about the son of a
family that I knew. He was a captain in the army. He and his
fiance and five other young Army officers had come to Washington
to run in a track and field meet.
On the way home, near
Arkansas, near Little Rock, the van rolled over, and he was
killed and his fiance lived.
Subsequently, there was, of
course, great grief. This young man was a West Point graduate,
of great talent and future. His wife subsequently was sent
fairly shortly after this to Afghanistan, and she wrote me
around Christmas last year, and she kept talking about "my
soldiers." She was in the earliest contingent. They had no
showers or anything else there.
And one of the soldiers
had committed suicide. She felt so one of her soldiers. She kept
calling them her soldiers. He got depressed being over there and
killed himself.
But in her letter, I don't have it with
me, but I remember her saying that her -- I had said something
about her compassion for her soldiers -- and she said her
fiance's death had changed her life. She felt differently about
her soldiers because of the pain of her own loss here, and in
that she said, "It comforts me that," like Samuel, his organs
had brought life to other people.
So I think this sense
that this was just doctors asking to give away a heart or
something like that and they didn't really think about it, and
that there was no sense in the whole story, that she thought
that was in some sense -- to me, she didn't say that she thought
that was a good thing. I mean, she's searching for the heart,
and I'll comment about that a little bit later if we have
time.
But I think that Hannah's response is unusual in my
experience for those who are organ donors, and I find that to be
the truth.
I mean, I take care of the poor. I mean, we
take care of the poor, and that's true for poor families, as
well as educated families, and so forth.
So I don't think
it's a bizarre story, but I think it's not in my own experience
a common thing where the donation of life is considered a plus
and partially doesn't ameliorate the grief, but it helps a
little bit.
CHAIRMAN KASS: Mary Ann, was that --
PROF. GLENDON: When I first read this story,
I really thought it was weird. I thought it belonged in Dr.
McHugh's department.
(Laughter.)
PROF. GLENDON: Then I started to think of it
as a story about grief, and I started to remember a lot of
behaviors that I guess might be considered weird, but they're
sort of on the borderline between this story and a normal grief
reaction.
When somebody dies, if they're buried in a
grave, we very often visit the grave. Some people visit the
grave more often than others, especially right after a
death.
One of my colleagues in Boston visited the grave
of her husband every day for over a year. That might seem a
little weird, but actually you could almost write a short story
about it. Once on New Year's Day, she met a guy who was visiting
his wife's grave, and they started to date. So it just sort of
had a happy ending.
But here's this woman Hannah who if
she wanted to visit a grave, she has the problem of what's in
the grave. Where is my husband because he's been
disaggregated?
And so I think that produced part of the
confusion there. Then that led me to think about the title of
the collection, Doctor Stories, and to think that there's a way
in which this story is about doctors as well as about
Hannah.
It begins with this rather abrupt statement,
"brain dead," and she's in shock. She's trying to process that.
What does that mean? The brain is dead. Is he dead? I mean, she
has to get through that.
And then she no sooner gets
through that and then she gets this demand for the harvesting of
the organs.
And, Dan, unlike many people who think this
out well in advance and do their families the favor of letting
the families know what they want, she has to make this decision
under less than optimal circumstances, and I think maybe that's
why she doesn't feel so comfortable about it.
So then she
says, "Doctors" -- here's the one sentence I underlined --
"Doctors, they simply do what they want to anyway without really
thinking."
She gave her consent under circumstances when
she really didn't think, and she hadn't thought about it ahead.
Her husband hadn't thought about it ahead. So she didn't really
know how she was going to feel afterwards.
She made a
decision that seemed for all of the reasons you gave like the
rational decision, but she didn't understand how she was going
to feel about this disaggregation of her husband, and I think
the behavior here is behavior that's something like visiting a
grave when you're not sure where the grave is.
DR. FOSTER: I laughed. I said that we
started off with the birthmark, and that was sort of an attack
on the scientists. It was sort of crazy scientists, and then we
end up with an attack on the doctors, and I feel like a double
whammy, you know, because I've tried to occupy both of those
positions.
(Laughter.)
CHAIRMAN KASS: Well, I mean, actually let me
say a word. Mary Ann, I would add to your summary of that first
conversation what is, I think, absolutely crucial. The physician
says more explicitly what Dan sort of implies is in the active
of organ donation. The doctor says, "That's what we call it,
harvesting, when we take the organs. It's for a good cause. That
way your husband will live on. He will not really have
died."
And she says, "Dead is dead."
And that
first view of hers is subject to reconsideration not least
because the suggestion has been planted there, I mean, by the
physician, and I get part of the weight of the story is is dead
dead when the vital parts of the deceased are active, but active
somewhere else, and I think that's part of what's set up
here.
Gil, I think I had --
PROF. MEILAENDER: Yeah. Well, I was going to
say that I don't think I find the story bizarre particularly,
and although I haven't paid a lot of attention to the question
really, and I don't deal with patients, I mean, I know that
there's stuff in the literature about the kind of psychological
dimension that organ donation involves for families and
survivors and the kind of weird sense of connection that they
have, and so forth.
So that didn't strike me as
particularly strange, but what I found myself thinking about and
unable really to answer in a way was what I thought about the
woman or what I'd say to her if she asked me, you know, "Should
I keep writing these letters badgering this guy?" and so
forth.
I mean, at one level -- well, at one level, I do
think it's a little strange. At one level I think she's making a
kind of sort of category mistake. I mean, I don't think her
husband does live on just because an organ of his is beating in
someone else's body.
On the other hand, you know, the
body, the living body anyway and even in some ways the dead body
immediately after death, is still the locus of personal
presence. It's the only place where we know the human
being.
And I guess I find myself in the position of
thinking that she's kind of deluded and wrong, but
understandably so, and I might feel the same way because there
is something about the body that carries that personal
presence.
So I couldn't figure out really what I might
say to her. She seems to me to be wrong, and yet I'd be very
reluctant to try to talk her into that fact, that she was wrong,
and so it's just puzzling in that way to me.
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 care of.
I take care of patients who are
terminal with chronic illnesses, and what happens often in the
last few weeks is that the transplant people start milling
around wondering when I'm going to say, "That's it."
And
I and my residents begin to feel that there is a little vulture
quality to this. Now, I know they're doing it for the best
reasons, and of course I understand why they are, but since my
tie is to that person who's in a stupor, a comatose state, and
that's not where they are, you feel.
So doctors are not
of all one mind and all of one experience. They know the
conflict here. And, in fact, when I speak to these others and
say, you know, "You're beginning to get a little "vulturoid,"
they disappear for a while. You can kind of shoo them away for a
while because they do understand, and they're trying to do some
good.
And it's up to us, all of us, to remind them of
what's happening with a particular person. And sometimes it's
the family, and in this situation it's the wife who in some way
is saying that.
The second point is this story is a very
interesting story about the kind of grief that you'd get with a
sudden death, again, as Dan said, of somebody youthful and very
unexpected. It's one of the worst griefs that we
experience.
There's only one grief that's a step worse
than this, and that's a mother who loses suddenly a child
between, you know, the ages of about two to age 18. That's a
terrible grief, and it lasts.
And in this case, you know,
she's talking about a three-year period in which the grief is
going on, and that's not unusual. That's a stretch, but it's not
unusual.
And what she has here, in fact, if you take it
from a slightly weird quality, she has this nostalgic grief that
you'll see amongst patients of this sort, who will wander back,
will always want to wander back to where they were with the
person and where they walked, and they'll come and say to you,
"You know, what's the matter with me?"
I even have
patients sort of like this who come to me and say, "You know, I
want to see her. I'm very depressed," and I find out that
they've had such a grief or such a death. They don't come in
immediately and say that. They come in and say they're
depressed. And they say, "Well, my friends tell me I should be
over this."
And I always say, "You have poor friends. Get
better friends who can really understand. Yeah, get better
friends who can understand what you're going
through."
And so at that level this story was interesting
to me, too. At the level of the doctor, the level of the grief
issues, and the weirdness of it, but the kind of comfort that
she got.
But, you know, there is, of course, a very
deeper issue here that we should really talk to people like Leon
and Dan about in the sense that this is deeply alliterative to
the Hebrew Bible. After all, it begins with the title, "Whither
Goest Thou," "Whither Thou Goest."
The woman's name is
Hannah, the mother of Samuel. It's talking about gather in the
wheat and the harvest, and of course, that made me think in
terms of my ongoing conversations with my Jewish friends who
talk to me about the Jewish-Christian differences over the issue
of the body and the soul, and the idea at least in the Hebrew
Bible about instead of thinking of an incarnate soul, they want
to talk about an animated body. There may be no being apart from
the body, and therefore, the values were expressed in terms of
life as we know it in the body on this earth. Okay?
And
that was the reflections that I began to have about this, and so
the chase therefore here over that one -- she doesn't chase the
corneas. She says she doesn't go for the corneas or the kidneys
and all because maybe you can't quite see them.
On the
other hand, she goes for the animated portion, and I thought
that was deeply spiritual and deeply meaningful for us as we
talk about the deep traditions of our culture.
CHAIRMAN KASS: Unless someone wants to
respond directly, I have Alfonso and then
Michael.
Alfonso, please.
DR. GÓMEZ-LOBO: I think in the end there's
going to be a lot of convergence around the table, but let me
throw my little wrench in here.
After I read the story I
felt critical of Hannah, and I know this is an unfair criticism
because I haven't experienced the loss of a loved one who's
really close to me in years, and I'm an organ donor. I believe
firmly in that. I have it on my driver's license.
But
here were my thoughts. My real question was: is it really her
husband's heart that is beating in this other man's
chest?
And my inclination is to say no. Why? Well, I've
spent so many years making a living reading and writing on
Aristotle, and Aristotle has this very firm view that an organ
has life and has meaning as part of a whole. The idea, say, that
you can consider the brain as an independent organ, of course,
for Aristotle would be totally inconceivable.
And
likewise, here I think that one would have to say that insofar
as that heart is beating in someone else's chest, it's already
part of this other person.
Now, I can certainly
understand this will to keep a loved one within one's reach, but
I also think there's a very important human lesson in the idea
of letting go, in coming to a point where you just give up or,
well, literally let go what you are hanging onto.
And
this is something I reflected quite a bit with some of the
examples that would justify cloning back at it, and one of the
arguments given by a philosopher that I greatly respect was that
cloning might be justifiable if a family loses a child and then,
you know, clones the child to have another one like that
one.
And I really thought that was pretty awful because
it was an example of not letting go. I mean, if you come to a
point where you lose someone, I guess that part of one's own
healing has to be that idea.
Now, Hannah, of course, lets
go at the end of the story, but I would have been more inclined
to side with Ivy, her friend, and say, "Look. This whole thing
for the moment is quite crazy."
CHAIRMAN KASS: Could I, Alfonso,
maybe?
Is there not some reason why letting go might be
more difficult under these circumstances? I mean, you have the
contrast in the story between her husband, Samuel's dream --
sorry -- narration of how as a boy he followed around looking
for his father, and at the end, the language is when it finally
passed he felt relief and disappointment, relief because at last
he had laid to rest his father's ghost, disappointment because
the wild possibility no longer exited.
She has a
different reaction at the end. It's not relief and
disappointment, but what if the body is -- Mary Ann said the
question is who is in this grave, especially if the body whole
hasn't -- at least there's reason for thinking that he's not all
there.
Now, what would you say?
Let me just -- in
a way, the question, and she puts it this way, she doesn't
really know whether she's a wife or a widow in some sense
because she hasn't been able to -- there's some nagging
question, which I don't think is simply craziness. It has
something to do with the ability to part with a whole body,
especially when the doctor has planted the suggestion, you know,
your husband won't be dead. He's still alive in other
places.
What do you say to this?
DR. GÓMEZ-LOBO: First, I wouldn't doubt for
a second that this may be very difficult, and I have no warranty
how I would behave if this happened to me. I'm sure this is very
difficult.
On the other hand, those of use who have had
experience with Spaniards, Spaniards can be very brutal, and
sometimes it's wonderful because they put you against the wall
and force you to face it. I think a Spaniard would have said to
her, "Vamos, chica. Eres un vuida." Come on. You are a
widow.
And the reason for this is because I think there's
a finality in death even in the case of transplants. I just
don't think that in any reasonable sense her husband continues
to live. I don't think so.
I think it's much more healthy
to accept that he's dead.
CHAIRMAN KASS: And just one last thing. When
the bodies are missing, the most recent example we had was after
September 11th, and the search for the bodies and the search for
the bodies and the search for any even tiny shred of evidence as
an absolutely indispensable condition even of the possibility of
letting go or of accepting death.
And she said herself,
she would go -- you know, if he were missing in action, she'd go
to Vietnam or whatever. Is that also not facing the truth?
DR. GÓMEZ-LOBO: No. On the contrary, I think
there's something deeply human in having the direct experience
of something. This reminds me of something we've discussed here
about why one mourns the death of a baby so much. Well, because
one has had her in one's arms.
And I think that laying
someone to rest in a grave has this value of one's seeing the
person finally put to rest, whereas not recovering the body, I
think, is terrible because it gives the lingering impression
that the person could be alive, particularly in the case of
disappearances like that. You still could have the hope, say, in
the case of prisoners of war or people missing in action, that
the person may be alive, may be in a prison somewhere.
So
it's not something different. I would say it's part of the
experience.
CHAIRMAN KASS: Michael.
PROF. SANDEL: I found this a bizarre story,
and I found the woman's quest odd and lacking in
resonance.
I think she was misidentifying though a
properly placed concern. The real issue this raises, as I
understand it, is whether and how human life and identity are
embodied. And so the woman in the story had an intuition that
the identity of her husband is embodied, situated in the
world.
Her mistake was to identify his embodiment with
his organs. Gil, I think, was right to speak of the locus of the
human presence, but I think it's a mistake, and it was this
woman's mistake, to assume that the only locus of human presence
is in the organs. I think it's an overly narrow, excessively
biologistic understanding of embodiment, the embodiment that
constitutes the human situation.
So, for example, if she
were writing letters not to the recipient of the heart, but
instead to the occupant of the house that she and her husband
lived in and raised their family in, that would have resonance,
if she were begging to see that house, to enter the house where
they had dwelled.
That would be, I think, more resonant
because it would better capture the locus of human presence. It
would better gesture toward on aspect of their embodied human
situation. It might be a house. It might be a village. It might
be a place where they went on vacation or a beach where they had
walked.
All of these, the impulse to return and to give
expression to what Paul called the "nostalgic grief," would be
less bizarre in any of those settings, I think, than to try to
seek out the organ.
So the moral of the story, the
broader moral of the story, I think, is right, that the human
situation is essentially embodied, but the particular way she
tried to grope to express this embodiment was bizarre,
misplaced, overly biologistic.
I think it would be more
wrenching in many cases to sell the house than to donate the
heart.
CHAIRMAN KASS: To this?
PROF. MEILAENDER: Yes. I just wanted to ask:
but suppose the body had been missing. You know, that's
obviously not this story. I understand that.
PROF. SANDEL: You mean the whole body.
PROF. MEILAENDER: Yes. Would it seem less
apropos of her to go in search of the body than to go on to
visit the house?
PROF. SANDEL: I would find it less odd than
what she did, yes. I would find that less odd.
PROF. MEILAENDER: Well, and maybe if that
were the case, it would make even more sense to go look for the
body than to go visit the house?
PROF. SANDEL: That depends. I'm not sure.
Not necessarily.
PROF. MEILAENDER: I mean obviously a life is
a complex interaction of nature and history, you know, body and
the lived history of the body, buy I'm not sure I want to buy
that overly biologistic description because I don't think the
problem is that she's looking for the body rather than, you
know, the house or the seashore or something like
that.
The real problem is whether it's his body that
she's looking for. I mean, I think that's really the underlying
issue.
CHAIRMAN KASS: Can I also interject
something to draw you out, Michael?
I mean, if one reads
and rereads, one would pick up all kinds of little clues of this
sort, but let me give you one passage from which it actually
gets there, puts your ear to the chest.
"Oh, it was
Samuel's heart all right. She knew the minute she heard it. She
could have picked it out of a thousand. It wasn't true you
couldn't tell one heart from another by the sound of it. This
one was Sam's. Hadn't she listened to it just this way often
enough? When they were lying in bed, hadn't she listened with
her head on his chest just this way and heard it slow down after
they had made love? It was like a little secret that she knew
about his body, and it always made her smile to think of the
effect she had on him."
And she also claims earlier --
I'm not saying that this is correct, but this is not a
biologistic sense of that, but it has a special marital meaning
as the heart in poetry always does.
When she says also,
"It was my heart." She speaks about it in the proprietary sense,
that it hurts to donate, but it's some other way -- I think
she's also saying his heart belonged to hear in a nonbiological
sense, but in a human sense.
PROF. SANDEL: Well, I would have two
reactions to that. First, I didn't find that a moving passage. I
thought it was kind of treacle, overreaching sentimentality on
the part of the author to strain to make precisely this
case.
And the proof of that is that it only works given
the heavily sentimentalized metaphor of the heart. Imagine
reading that passage if she were in search of the kidney.
CHAIRMAN KASS: It couldn't be done with the
kidney. The kidney doesn't move.
Sorry. I'm indulging
myself. Who -- Rebecca, Bill, and Janet, I think, is what I
have.
PROF. DRESSER: One thing interesting about
this is it's really not a doctor's story. It's a story about a
patient and a member of a patient's family. So I don't know if
it's a typical doctor's eye view of the world. Everything is
about me, or I don't mean to be critical, but it really was
about these two individuals who had a brief contact with the
medical system and now they're kind of left on their own and how
do they handle these things that are lingering?
But what
I was interested in was her sense that she was owed an
obligation by this recipient of the heart. It was her heart to
give. I think it's referred to as her property, and she wants
something in return.
Does he owe that to her? He really
has, you know, a sense of privacy, I think, that's being
violated. And I was thinking about how uncomfortable it must be
in some ways to receive this, especially this special organ,
from someone you don't know. It's this incredible intimacy, and
on the other hand, it's a total stranger. So you almost don't
want to let that person in because it seems very threatening in
a way.
And so he was trying to keep her away, this person
named Pope, and I'm not sure if that had
significance.
But so she goes into his medical records to
find out where he is and then starts badgering him, and she
wanted something in return. And I was thinking about this in
relationship to this issue of paying for organs. I mean, she
wanted some in kind compensation.
And is that somehow
more justifiable, ethical for her to feel that kind of
entitlement than it would be for her to say, "Well, you should"
-- maybe she's lost a major source of income. So the recipient
should help her out in that way.
What were the ethics of
her behavior toward him?
And also the transplant system
in some paternalistic way imposes this rule that the donor's
family and the recipient should not know each other, and I
believe sometimes there's a time limit and then they can get in
touch, and sometimes they don't want to disclose identity at
all.
And that's imposed based on the judgment that, well,
that's better for everybody if we have this rule. And is it
really better? It wasn't better for Hannah, but it might have
been better for Mr. Pope. I don't know how he feels after this
incident, whether he feels a sense of relief or a sense of
giving that maybe made him feel better. I don't know, but those
were the thoughts this triggered in me.
CHAIRMAN KASS: Bill Hurlbut and then
Janet.
DR. HURLBUT: I want to pick back up on what
Leon was saying a minute ago. There are a few little clues in
this story that -- I don't mean to make this more abstruse than
it needs to be, but there are things that stand
out.
There's a moment where it says, "Besides, she wanted
the time to think, to prepare herself like a bride."
And
then when she's listening to the chest, it says, after what Leon
had read, it says, "And now it was no longer sound that entered
and occupied her, but blood that flowed from one to the other,
her own blood driven by the heart that lay just beneath the
breast." And in a sense she's born through this.
I wonder
if maybe there's a meaning in this story that is below what
we've been discussing thus far, which is sort of the obvious of
individual discontinuity, if maybe this isn't a reference to the
deeper question of generation and the deep mystery of material
being -- of seeds, of gleaning.
In a sense, it's
obviously drawn from the Book of Ruth, which is a profound story
in the Bible because it's in continuity with the lineage of
David and to a Christian, that means the lineage of
Jesus.
And it's obviously about Ruth cleaving toward
Israel instead of the Maobites, and a particular perspective on
the profound meaning of what life is.
In that sense it
seems to me this might be a story about grief and grace and
material existence, where within this mystery of death there are
these seeds where Ruth went forward with life and raised up
children to her deceased husband, and in this story she receives
her life back and goes forward.
She feels the blood
flowing from one to the other, and blood in the biblical
tradition is life, continuity, and the key might be that where
it says that she lay on his naked torso, the man, and that the
chest upon which she had laid her head was a field of golden
wheat in which at this time it had been given her to go
gleaning, another reference to seeds.
I just throw that
out as another layer of the meaning of embodiment.
CHAIRMAN KASS: Thank you.
Janet, go
ahead. I'll hold back.
DR. ROWLEY: Well, I don't have any great
words of wisdom. I have to say that when I read the story, I did
think it was rather odd. I guess my only comment for the
discussion around the table is that I think we're being too
judgmental, and it certainly is extremely unusual in terms of
both her request and her need for closure and for closure to
come in this particular fashion.
On the other hand, the
story indicates that at the end and after being able to listen
to her husband's heart, she did achieve closure, and so that
whether one wants to expand this to a larger context that the
end justifies the means, I'm not sure, but at least as the story
plays out, there is a good end.
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 on.
I mean,
I think Thomas Aquinas would have said that that's natural and
intrinsic to the human character. In some sense to me one of the
most important things here was Mr. Pope. He feels her pain, and
he finally invites her to come, and that is humanity at the
highest level.
I mean, her pleas were sort of a
transcription factor for his kindness gene, and he brings her
in. He has a heart to changes. She probably thinks it's because
it's Samuel's heart, but it's his heart, I mean, his mind and
soul that changes, and that's an encouraging thing.
And,
secondly, at the end it moves more from kindness to a kind of
love, not an erotic or romantic love, although they were very
careful to worry about the wife being away, and there was the
human need to touch. I mean, I don't want to talk about that,
but people want to be touched, I mean, when they're wounded and
so forth, and her head on his chest and his arms around her
illustrate this need.
But when she goes to leave,
something has happened to him more. He has a kind of live. He
says, "Hannah, will you want to come again?"
And the
author says how soft and low his voice. Now, I believe -- I
don't mean to imply, as I say, any kind of an attachment to
Hannah, I mean, in the sense, but his kindness and seeing her
response to that moves him to more kindness and a sort of love.
It's a sense the noncontingent love of agape. He wants to care
for her and to do for her what is best.
And in one sense
it's sort of a like for like. I mean, he gives love, and then he
receives love. That was sort of Kierkegaard's like for like or
Ralph Waldo Emerson said, you know, when one does a kind deed to
another, one is instantaneously enlarged. I'm paraphrasing. He
didn't say it exactly that way.
And when one is demeaning
to another, one's soul essentially shrinks instantly, you see.
So it's sort of touching to me to see Mr. Pope here, and in one
sense he is not bizarre. I mean he is human at the highest level
in my view, and that's one of the most redeeming things about
it.
PROF. MEILAENDER: Can I just ask one
question?
DR. FOSTER: Ask any question you want.
PROF. MEILAENDER: This is a terrible
question to ask, in a way, but is it really that Mr. Pope
changes or is it just that Mrs. Pope goes away?
DR. FOSTER: Well, I don't know if you want
me to answer that. I don't know. I mean, it's just a story. It's
just a story. I mean, it's a surgeon who writes a story, and
he's a surgeon who doesn't like doctors, and so he puts this --
I mean, I don't know how you could say that, but when you come
to a story, one brings into it what one sees, and that's what I
see.
Janet says we shouldn't be judgmental. I don't think
we ought to be so judgmental. I think it's okay to say that
she's bizarre. I think she was bizarre, but I mean, we wouldn't
say that publicly to her.
But it's also judgmental to
assume that when somebody does good that it's for some ulterior
motive, that his wife has gone away, Gil. I mean, I think that
is, if that's what you're saying, that that's a judgmental
--
PROF. MEILAENDER: I just mean that I think
it was Mrs. Pope really who said, you know, "Goddamit, I'll call
the police." I think that was the real voice behind that
letter.
DR. FOSTER: I see. Well, that may
be.
I want to make one other point before the session is
over, but I don't want to --
CHAIRMAN KASS: I'll put you back on the
list. Do you want to do it --
DR. FOSTER: No, I don't want to do it now,
but I want to come back to the essential question of what this
heart means, and what the self and body is just from the
practical experience of one who has taken care of the dying and
seen it many, many, many times. I do want to make a comment
there.
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 on.
Just one other point. I do think that this
preoccupation with the bodies of the dead is a kind of cultural
thing. This is something that Paul had mentioned. I just throw
in my own anecdote.
You know, they cremate everybody in
Asia, and so when you go to visit the grave, there's no pretense
that that's, you know, somehow the person there.
My
father, who was born in the United States and really grew up
very American, happened to pass away in Japan when he was on a
tourist visit there, and so he was cremated in Japan, and you
know, I flew out there, and had to go through the ceremony that
I just found horrifying, but apparently all Japanese do it,
which is that once you come out of the crematorium, the family
members then actually then they spread the ashes out, and then
each family member is required to, you know, take some of the
ashes and deposit it in the air, not all of them, but some of
them.
And you know, I hadn't been expecting this. I
didn't like going through it. You know, but in reflecting on why
this custom exists, you know, it seems to me it's probably to
tell the family members: look. This is all that's left. That's
all that's left, and you know, in a way, get over it. You know,
it is precisely that message.
And you don't even put all
of the ashes in. You just put, you know, some of them. I don't
know. They throw the rest of them away, and so it is a kind of,
you know, I guess, cultural recognition that the person is not,
you know, in whatever it is that's left over that's put into the
grave. It's, you know, the family members, the spirit that has
departed and is now somewhere else.
And so I guess I was
a little bit Alfonso and Michael in finding that this is -- you
know, that particular emphasis on the body and, in particular,
that organ was a little bit -- I found it something not terribly
resonant.
CHAIRMAN KASS: Mary Ann.
PROF. GLENDON: Well, I wanted to say
something about Mrs. Pope, too. The marital imagery in relation
to the heart gets very complicated here. There's a way in which
Hannah thinks that this heart is hers, but in the
correspondence, Mrs. Inez Pope quickly shifts to being Mrs.
Henry Pope, asserting her unity with the current possessor of
the heart.
And I do agree with Frank and Gil that there
is a sexual rivalry, a kind of a contest going on over this man
and the heart.
The other thing I wanted to point out
because it's relevant to our discussion yesterday is this
sentence, "You, Mr. Pope, got the heart or, more exactly, my
heart as under the law I had become the owner of my husband's
entire body at the time he became brain dead."
Well,
there's a certain way in which you could find legal cases about
dead bodies that would support that assertion, but many of the
courts are careful to make a nuanced distinction that just
because you have, as next of kin, you have the right to dispose
of a body or to make certain decisions about the disposal of the
body, that doesn't mean that you are the owner of the body or
that a human body can be property.
So this idea of
property and bodies that's so pervasive in our thinking even
creeps into this story, but it's not necessary to the legal
analysis of one's rights, and you see, but once you propertize
things, it's very easy to slide from I own into I have the right
to do whatever I want with. And that's not obviously necessary,
but it's a common elision.
And we see in this painful
case of Ted Williams, here we have apparently a son who has made
a living and supports memorabilia related to his father, wanting
to continue the memorabilia business with the DNA of his father,
and you have it, of course, brought into the courts in the way
everything is, but I hope it's not going to be decided over who
owns Ted Williams' body, but rather who has the right to make
certain decisions.
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
controversial.
The idea that two could become one in this
way, that there would be a unity of bodily -- unity that
marriage is, in some fundamental sense a bodily unity, makes
sense only if persons, whatever else they are, are their bodies
rather than something abstracted from the body which occupies or
is somehow mysteriously associated with the body, like a
consciousness inhabiting the body or even a spirit inhabiting a
body, but detachable from it in the biblical
tradition.
In the broader tradition in the West, embodied
both in the cannon law of the church and in the civil law what
marriage is is not simply an emotional unity of two persons
which is somehow enhanced by their bodily association or by the
sexual dimension of their marital relationship, but what
marriage is is a bodily union, the sexual dimension of marriage,
sexual union being the biological matrix of a more comprehensive
union of the persons as a whole, that is, in their biological,
emotional, dispositional, even spiritual dimensions.
And
in any human activity, engaging any activity has an experiential
component, but the activity itself is more than simply the
experience of the activity, and this is true of marriage or
anything else. And we can understand that if we use Michael
Sandel's late colleague's, Robert Nozick's thought experiment
about an experience machine. Think of some activity, hitting 70
home runs, for example, in a season or hitting home
runs.
It would be possible to imagine a machine or a pill
that would give you the experience of hitting home runs, but you
wouldn't actually be doing anything. Imagine yourself as no
success being a brain floating in a tank having the experience
of writing the great novel or of hitting home runs or of
marriage, but not actually doing anything.
So that while
the experience of human activity is an aspect of the activity
itself, the activity isn't reducible just to the experience, and
it would be odd and mistaken to want just the experience without
the activity.
And as I was reading this story, it struck
me that Mrs. Owen is interested, among other things -- and I
agree with Janet that she's interested in closure -- she's
interested in getting together with Mr. Pope to have an
experience that she had had before. Now, this is not the
experience of sexuality. I don't think that there's an erotic
idea of a relationship here between the two.
But in the
language that Leon quoted, it seems clear to me that she would
like to have the experience that she had with her husband in
their most intimate moments of marital unity, that experience of
lying on his chest and hearing that heartbeat, as it did in
those moments after sexual unit.
And while I confess that
like so many of you, I was struck on reading this story that
this behavior and desire on her part was very bizarre, on
reflection I don't find it out of the realm of possibility for
understanding or resonating with the use of Michael's term. I
did feel some resonance as I could understand what she was
after.
However, the reality is, the truth is that that
experience which could be replicated of hearing that heartbeat,
feeling -- at one point she says, "Thus she lay until her ear
and the chest of the man had fused into a single bridge of
flesh," one flesh unit, "a single bridge of flesh across which
marched one after another in cadence the parade of that mighty
heart."
She's getting some of the experience that she had
with her husband, but of course, she can't have the reality. The
experience is not the reality. She knows that in the end. She's
not interested in coming back, even though Mr. Pope has invited
her if she wishes to do it again.
She understands now
fully the distinction between the two, but I think it was that
powerful experience that was the particular thing that she was
here after.
CHAIRMAN KASS: Comment to that?
Well,
let me put myself on the list unless I've missed someone who has
been waiting.
I would grant that the behavior is odd, and
I would also grant that in some way one should face the facts,
all of that. But the more I read it and think about it, the more
Selzer has, I think, seen rather deeply into a certain kind of
disquiet for both donors -- of the deceased donor we don't speak
-- but the surviving spouses of donors and the recipients that
come from treating this act especially with the heart, I think,
as merely a biologistic transaction.
And the dream that
she has of the two men lying side by side with empty chest
cavities and the life of the one being moved to the other, the
doctor says it's just the respirator keeping him alive, but
after all, there still is the beating heart which is
symbolically moved from the living to the otherwise
dead.
The medical picture of that has a kind of symbolic
reality, even if it isn't the ultimate truth.
And when
she begins by saying, "Dead is dead," but then begins to wonder
partly through the experience of the butcher, then the
discussion about the resurrection of the flesh, and the question
is what would be resurrected, and then ultimately with this
dream that comes after the storm and the rain, with the kind of
revelatory moment, there's something about it that makes me say
she's actually closer to some truth about the experience of
transplantation.
You have to block out certain kinds of
things that happen on heart transplantation in order to treat it
simply in terms of its wonderful practical result. There are
certain kinds of things that have to be blocked to the
side.
And Renee Fox and Judith Swazey have written about
transplant and other people have actually called attention to
these deep emotional and psychological things that are part of
the picture but tend to be ignored if one is just looking at the
functional aspect of it. That would be the first
point.
And, therefore, I sort of, although this is
bizarre, there's something about her quest that makes sense to
me. There's something about the quest symbolically, not as a
deed. That would be the first point.
And then it seems to
me something really marvelous happens at the end, and here I
would pick up with what Dan says. When she comes -- Henry Pope
has out of a kind of act of sympathy yielded to this request.
It's necessary that Mrs. Pope be away, but he's yielded to it,
but he doesn't like it at the beginning.
And the language
is the kind of language almost of a prostitute. "It's your show.
How do you want me? I suppose you want this off." That's the
kind of language.
He's uncomfortable by this. "Where's
your stethoscope?" All of that.
Something happens to him
in the very end here, and the question is: what is that? And
could one say that the recipient, though he didn't know it
himself, also needed this?
The most astonishing thing to
me is at the end that his arm is around her, and that she was
trembling. Now, is that an act of Christian charity or has he
somehow momentarily become husband-like to her as a result of
this sort of one flesh union, not of sexual concourse; the union
of his heart driving her blood is the way the language is
put?
Now, it's a story. There's a certain poetic license
here, but the question is: is there something in the act of the
exchange of organs, wonderful that it is, wonderful that it is,
but that involves an overlooking of what it means to be in your
own body in which one needs finally to acknowledge in order to
really make the experience whole?
I'm not sure I'm
putting this very well, but I think in some way maybe both of
them get a kind of closure as a result of this thing.
I
wonder, Dan. This is partly to follow up on your thoughts about
his wonderful conduct, but a transformation that he didn't
expect. If you want to comment or maybe you want to wait.
DR. FOSTER: No, I mean, I think you and I
both agree that the most profound thing that happened, I focused
on Mr. Pope primarily. I think she got closure, too, and you
want to make it a mutual thing. I want to look at it in a higher
level of not as a husband that you and Bill sort of talked
about, but at a higher level of love.
But I do think that
that's a central point for me.
CHAIRMAN KASS: Please, Rebecca and then
Gil.
PROF. DRESSER: I just wondered. Does this
make you think that the general rule that recipients should not
know donors and donors' families, that it's wrong? I mean should
we change it?
CHAIRMAN KASS: You know, there's perfectly
good reason for it, and in a certain way you could -- the reason
for the rule, the reason for the rule I would say is a testimony
to the truth of what I've just said. Not that you should break
the rule necessarily, but the fact that this is a kind of
intimate transaction in which people probably are better off not
being reminded of the possible confusion, and that one should
leave it as a gift of life, but without necessarily getting
involved with the giver in whose embodied life you are now
sharing in some way.
I mean, I don't know. It would be an
interesting question. If your spouse had a heart transplant and
you would be first, second, fifth, and tenth thing to say is how
grateful one is that the spouse is still alive. Is it true as
Alfonso said before that once you put the foreign organ in here,
it is now in the integrated whole which is governed by the anima
and so, therefore, it's no longer the part where it came from,
or would it be simply craziness to say, "I have a relation.
There's something of someone else's here"? Not that it would
produce jealousy, not even that it would produce curiosity.
Those things probably should be resisted, but the question is:
are these parts simply alienable as mechanical parts might be or
is there something here -- has Selzer put his finger on
something that is generally out of sight and yet very
important?
Gil, do you want to?
DR. FOSTER: Let me just respond to one
thing.
CHAIRMAN KASS: Please.
DR. FOSTER: There's one thing I haven't
mentioned because the interpretation that I see is what I like
there, but Mr. Pope may also have been informed by his surgeon,
by his transplant surgeon, that this heart is not going to last
forever. They don't last very long because you get disease and
so forth. This is not like a kidney where you can go 35 years or
something. It's not going to last all that long.
So part
of his transformation to sympathy and so forth could have been
-- I don't know this. I mean, it's just a story -- but if he had
been informed, he might have thought also -- I mean, the
transcription factor for his kindness gene might be that my wife
is going to have to go through the same thing, and I hope that
there's someone who will be for her what I have been for him --
I mean for Hazel.
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.
Once the lines are crossed, other lines are
more easily crossed, and it's because in doing the good in
transplantation, we are consciously pushing away the things that
make us uneasy about this.
And I think that the next step
in this and the reason that we've been struggling with cloning
and these related issues for the last month is because the
logical next step is to take the organs not from the dying, but
from new human life, which is where you go with this.
And
that's why I think it's important at every stage in the process,
every stage has in transplantation which yields unequivocal
good. We ought to stop and look at the cost and think of where
it might lead.
CHAIRMAN KASS: Gil, did you want to come
back?
PROF. MEILAENDER: No, I'm on the same wave
length in a sense. I mean, I just think that the more we're
persuaded by the truth of the line that you are pursuing, the
more troubling the whole operation becomes.
CHAIRMAN KASS: Robby?
PROF. GEORGE: I'd just ask the question for
Charles.
Isn't there a clear line though between
extracting organs from the dead and removing organs from the
living? I understand what the Chinese do, but they have gone
over the line precisely in killing to extract the organs.
DR. KRAUTHAMMER: But let's remember that our
definition of death has changed in the last hundred years and
the last 50 years, and in part to accommodate our need for
organs.
It's brain death, which makes sense to us, but
that's a new idea, and once you move the very idea of death in
that direction, when exactly is a patient brain dead? Well, I
mean, that's sort of a decision the doctor can make hour to
hour, and you might want to make it earlier if the organs are
fresher.
So it leaves you open to blurring and crossing
lines.
PROF. SANDEL: Could I put a quick question
that can be answered by Leon or Charles?
Does your view
about the natural impulse to human embodiment and bodily
wholeness suggest to you that those religious traditions, going
back to Frank's point, that believe in cremation tug against or
in some way violate that fundamental human impulse about
embodiment?
DR. KRAUTHAMMER: No, I don't think so
because I think you can have a belief system in which when death
is a reality and a finality, the body becomes less
important.
In our tradition, the Western tradition, it
remains rather important, which is probably why it strikes us as
more difficult and problematic.
PROF. MEILAENDER: Could I make one comment
on that, too? I mean, I don't think that they necessarily do,
but on the other hand, I want to be cranked down. You know, I
mean, that's actually significant to me. I'd like it done, and
I'd like my wife to listen to it happen.
PROF. SANDEL: Let the record reflect that,
Mr. Chairman.
CHAIRMAN KASS: Yeah. We should wind up in
just a couple of minutes. I have Paul. Again, I want to go last.
I want to put one more word in, too.
Is there someone
else who wants in the queue before we break?
Paul.
DR. McHUGH: I only have a few things to say
after those wonderful comments, and actually there are three
things.
First of all, I was there when they did the first
transplants at Brigham, and if you remember, they didn't take
them from the dead. They took them from a twin, and it was a
really -- I can tell you it was a really scary time because you
were trying to keep the patient who was sick with the kidney
disease alive, and you were really worried about what was going
to happen to this healthy person.
And so I am agreeing
with you, Charles, that it was a boundary period, and we should
reflect more about it even today, but I remember the nervousness
of us interns and house officers as we were running
about.
The second thing I wanted just to make a little
point as I was reading along this. You know, as I say, I take
care of a lot of patients with grief, and I wondered to myself,
"Now, would I tell her to go and find that guy, or would I say,
'Now, wait a minute. That's not going to be a good thing for
you?"
Because my function, after all, is to help
rehabilitate patients who are suffering from this
business.
But that brings you back to the whole idea of
what do you mean by grief, and grief is a natural sequence that
seems to go pretty similarly from case to case depending upon
the loss.
On the other hand, it is an arena of meaning,
and we doctors don't deal well in meaning because you kind of
put a law to it. And so in the end I thought one of the things
about this story, like all stories, that might be helpful for
psychiatrists is that it might enlarge your scope as to what
kinds of behaviors you would permit, let's say, rather than
encourage.
I would be very worried about encouraging this
woman to do this because I'm afraid that the success would lead
her to come back again and again, and the fact that in the end
that she says she's not going to do that, I kind of held my
breath a bit about that.
But I just wanted to finally
come back to the idea that this a deeply Hebraic story, I
believe, with this deep sense that we sometimes lose that the
distinction in scripture is often not between spiritual and
material, but between vitality and weakness, and a spiritual man
is a man of spirit, full of life and vitalized by the power of
God rather than etherialized.
And finally, to come back
in my work, one of the problems that we are facing with the idea
that human kind could be looked at not that way, as an animated
body, but a soul trapped in the body like a bird in a cage is
one of the reasons why people come to us. They don't come to
Hopkins anymore because I put an end to it, but they would come
to Hopkins and say, "You know what? I'm a woman in a man's body,
and you've got to do something about that. You've got to hack
away at me."
And that comes out of this idea that somehow
or another, there's somebody inside that's different from what
we are, and it's a problem, and it's interesting to track it
back.
And I think the Hebraic tradition wouldn't have
anything to do with that, but I leave it to you to tell me.
CHAIRMAN KASS: No, I certainly think that's
right. Let me make just two points, and then I want to give Dan
Foster the last comment.
Charles is in a way right in
saying, and it's partly what I've been pushing here, we did talk
about the question of property in parts of the body and
questions of modification, but in part one might be worried
about that because one thinks of the degrading sale or one
worried for other reasons about creeping commerce, but I don't
think that one would begin to worry about commerce in the
movement of body parts if one didn't have some prior at least
minimal disquiet about the moving of the body parts themselves,
even if it were done without money.
And Mary Ann's
suggestion that we might hear some time in the fall or have some
discussion of legal systems where the ground for excluding
bodies, the human body from the domain of what can be owned
rests upon some understanding of that.
And this is not to
say that one has an objection to transplantation, but that one
should understand it as having to overcome things which are ?-
the question is whether the things that are disquiet bespeaks is
simply the strangeness and novelty of it, as Charles suggests,
or whether this is another one of those things where it's a clue
to something about our identity and who we are that is at least
being threatened, nevertheless that good may come of
it.
The second point I wanted to make has to do with
something that Robby said, and it is, I think, probably Hebraic,
as well. This is from the Book of Ruth. The remark, "Whither
thou goest I will go," is said by Ruth to Naomi, when Naomi
returns home, Ruth then and her sister both having lost their
husbands and often, it seems to me it's being said as it's a
sign of the friendship of women.
But I think it' s
probably truer to say that Ruth goes with Naomi as her
daughter-in-law , which is to say as the wife of her now
deceased husband and the whole trajectory of the story really is
the levirate marriage and the raising up of seed to the
dead.
What this story adds to Gil's very fine opening
presentation about whole and part and spirit and body is this
thought, which until I read this story. It wouldn't have come
home to me so powerfully. There is a way in which as embodied
beings we're halves, and that it's a real question whether or
not and part of the real difficulty for this woman is being
unclear as to whether she's wife or widow. She cannot somehow go
on, and that has something to do with the fact that --
additional complication of what it means to be an embodied being
is somehow to live in time and then be connected with generation
and the missing half.
If one wants to really think about
bodily identity, one has to think about that aspect of our
bodily identity which is tied to generation and, therefore,
implies complementarity or something else and not just the
individualistic view of ourselves top to bottom as, you know,
what are we along, but the relational aspect is very powerfully
presented.
I'm sorry for that. Let me turn it over to Dan
and then we'll take a break.
DR. FOSTER: Well, I thought it was pretty
good. What I'm going to say now does not mean that I do not
believe that we're a whole. I'm trying to say that, you k now,
all of us live in body. In some sense, sometimes we disagree
with our body. I mean, I did not see the sexual connotation that
Frank saw in here, and I don't need Viagra, but maybe I need
something to increase my thoughts about sex. I don't know. Maybe
we ought to do that. I don't know.
We live as -- I'm just
kidding -- we live as a whole, and sometimes we deny our bodies,
and sometimes we enhance them. Sometimes we're weak, and
sometimes we're strong, and so forth, but I want to talk about
the end for just a second.
I've hinted at this and said
this before. I think death is always a serious event. Sometimes
it's a blessing and sometimes it's a curse or a loss and so
forth, but it's always a serious event, and I just want to share
my own experience with this.
Whether one is alone there
or whether there is a group of physicians or family, there is
that moment in death where everyone who is there knows that in
an instant the person is no more. We oftentimes use the term
"departed."
Leon shared with me his presence at the death
of one of his close friends, holding hands, and he and the nun
continued to talk, and the nun didn't realize because of their
conversation, and as I recall Leon's story, she said, "I think
he's gone now."
And Leon gently said -- I think you can
correct me -- said, "Well, he left 30 minutes ago," or
something. They were so intense in conversation.
But
there is a palpable sense that something has gone. The body is
intact. I can take any part out of it and transplant it and it
works. I mean I can take kidney; I can take cornea; I can take
heart. It's in that sense still alive.
I mean, it can't
generate ATP and it can't sustain itself by itself, but it's
there. But something is gone. It's like a breath of life has
gone, and if you're there, everyone there knows it, and in every
sense that I've ever been there, there's a sort of a silence and
a sort of a reverence that that has happened.
And so I do
not believe that we are defined by our bodies. I think they're
necessary to live, but they're not defined by our bodies, and
that is what has led in many faith experiences the sense that I
do not cease to be.
Another way of saying this, you know,
if Yogi Berra was talking, he would say, "It's not over when
it's over." It's not over when it's over. I mean, that's the
hope of humans, by the way. Gil wants to be buried whole because
he wants that pitiful, old body he's got right now to still be
resurrected.
You know, I mean, I'm just
kidding.
(Laughter.)
DR. FOSTER: But the point, I'm trying to
make a really serious point, and everybody knows it, and
sometimes the eyes are closed and one is just comatose, and it
just goes, but sometimes, not infrequently, before the death the
eyes are roving of the person who's going to die. They're like
this. It's like they're seeing something or trying to see
something.
I've oftentimes thought -- I don't pay too
much attention to near death experiences, people who, you know,
have been resuscitated. They have these visions about -- they
say they're never afraid of death anymore and they may have
heard music or all sorts. That's just a vision as far as I'm
concerned.
But you do symbolically have a sense that
someone might be looking for something else as death
comes.
So I just want to say that I think it's a terrible
mistake, and I agree with Frank. That's why I wouldn't think
that I would be worried about cremation or anything else,
because that's not me. I mean, whatever this breath of life is,
that's me.
At one time it had a body and now it doesn't,
but I think it would be an error to say that one is only what
these hands are, what this mind is, and so forth.
So I
just wanted to pass that on from experience. I probably -- I
mean, I've been there so many times that it never ceases to
amaze me how everyone knows that the breath of life is gone. He
departed, Leon said about his friend. He left 30 minutes
ago.
I hope you don't mind me sharing that
conversation.
So that's all I wanted to say at the end. I
don't think that this part of this person's heart or anybody's
heart is that person. I don't think that at all. I think that's
my sense. I mean, I think that's itself a little bizarre to
think that.
So I didn't mean to say so much, but I did
want to share this sense that there's something great that's not
part of these hands.
CHAIRMAN KASS: Thank you very much.
DR. KRAUTHAMMER: Could I just add a footnote
on this idea of the embodiment of the dead body?
I read
on the Net this morning before leaving that the Israelis
apparently were going to put Barghouti on trial, there's a
report that they're going to release him to the Lebanese and
plus 100 live terrorists in return for an Israeli who had been
kidnapped in the body of the three Israelis who had been
kidnapped and killed in Lebanon a year and a half ago.
I
mean, the value that they and, I think, we put on the bodies of
the dead is simply astonishing in this offer which apparently is
reported this morning, which is so unbelievably one sided, I
think is a testament to how much importance we put on the what's
left of us even when the breath is gone.
DR. FOSTER: Well, I would say in the
conversations that we've been having about cloning and so forth
that the dead body is symbolically very meaningful to everybody,
and it's due high respect for what it once was, and that may be
something of great value, but it depends on where you're coming
from. I mean, if you believe that that body is all there is and
that there was nothing that was in that body, then, of course,
you may want to say, "Well, if I've got to return, that's all
I've got, and what I also don't have is any hope, I mean, you
know, in death. What I also don't have is any hope in
death."
CHAIRMAN KASS: We should stop. I simply want
to say that, I, for one, am very grateful that that breath of
life that is the soul of Dan Foster is connected to a
tongue.
We're adjourned for 15 minutes. We'll say 10:35
we'll come back.
(Whereupon, the foregoing matter went off the record at
10:18 a.m. and went back on the record at 10:44 a.m.)
CHAIRMAN KASS: Could we return please and
begin?
Frank, is the metaphysical group going to
return?
This session is devoted to taking stock of where
we are and beginning to talk about some future
directions.
Just some general considerations, a reminder
of some things that are at least under consideration, and then I
think a free ranging discussion that would help us think and
make plans for the future.
The first consideration, this
Council by executive order is in existence till the end of
November 2003. That's 16 months, something like that, and it's
unlikely that we can do more than a couple of things and do them
well.
So there are lots of things that would be worth
doing, but we'd have to make some choices of more important and
less important. And there are some things worth doing, but might
not be worth doing by us, given our strengths and talents and
the like.
Second, there is a consideration that for some
people the issues that we should take up are things that bear
upon immediate policy questions. There are other people who
think that what's most important for a body like this to do is
to lay the groundwork for various kinds of questions that might
be coming and bring to public view certain important
considerations that are insufficiently attended
to.
Enhancement, for example, would be one such
topic.
And I think we've learned from our experience over
the last six months that it matters if you're trying to conduct
a fundamental inquiry whether or not there is something else
going on around you that has a kind of urgency in which there
are various pressures brought to bear upon what we
do.
This is a Bioethics Council, and as indicated at the
start, ethics doesn't simply stop at the doorway to politics and
policy. That has a deeply ethical dimension.
But we also
have to be very careful as to whether or not we get caught up in
things that are around us and simply respond to those kinds of
pressures.
At the moment we have not been asked by the
President to tackle any particular topic, though that could
come. And I do know that that part of the executive order which
asks the Council to explore the human and moral significance of
things is taken seriously there. They're not necessarily simply
interested in advice on this or that practical question, but
with a view to this field as a whole and the fact that its
issues will be with us for a long time, we do have the green
light, I think, to find our way on the basis of what we think is
either most urgent or of the greatest weight.
That, by
way of some general considerations. I may have left out some
others.
We have, as we were doing the cloning work, we
have embarked on at least three other possible lines of inquiry.
One was stem cell research, and we had yesterday our second --
our fourth session on stem cells. We had the two presentations
from the scientists, Dr. Gearhart and Dr. Verfaillie. We had Dr.
Outka's presentation and discussion on the ethics of stem cell
research, and yesterday Dr. Baldwin on the implementation of the
policy.
We've had two sessions on enhancement, one
prompted by the working paper of the staff, and then the one we
had yesterday afternoon, and we've had under the broad heading
of regulation, I think, four sessions, one, the general
discussion prompted by the readings of the material that Frank
provided from his own writings.
At the last meeting, two
sessions with Lori Knowles and Dr. Baird on the international
models, and then since we're treating the question of the
patenting. Actually maybe I'm wrong. Maybe that's five
sessions.
Well, we've had two sessions, several sessions
on patenting, which does also deal with the general question of
if not regulation, at least the interface between research or
science and society applied not to this particular technology or
the next, but to things in general.
Yesterday there was a
discussion that suggested one might enlarge the patenting
question either in two directions, one in the direction of
science and commerce, the other in the direction of property and
the body.
So there was the possibility of thinking about
patenting by itself, patenting in relation or as an instance of
and in relation to certain other things, and further questions
developed along the lines of if one wanted to pursue the
question of enhancement, to what extent is the sports example a
useful instance?
Does one want to think about
enhancement? And I don't know whether, Dan, your suggestion that
we take up germ line modification was with a few to the question
of enhancement or simply the question of remedying single gene
mutations, but Dan had brought that up as well.
That is
simply by way of reminder. I have a couple of thoughts myself,
which I'll at least put out there. I would say that a
bifurcation of our efforts, to think about maybe two large
projects if we could figure out how to do them well might make
sense. I'll simply speak for myself, but I'm really open to
suggestion.
One, it's very nice to be liberated, I think,
simply from the question of the ethics of the means and to try
to think about some of the difficulties that come from where
these powers are to be used.
And I don't like the
distinction between therapy and enhancement as the best way into
this subject, but that's onto something. If you go past the
remedy for the treatment of individuals with known diseases, one
has wandered out into unchartered territory. No previous council
has ever really taken this matter up.
It is not an
immediate policy question, to say that somebody is waiting to
hear from us on this, but I think that in some way this might be
the largest question where much of the greatest disquiet about
what might be possible, and we could talk it through and maybe
even address some of the disquiet and tone it down and also
provide some ways of thinking about it.
So the use of
these powers beyond therapy, I think, is one large area which
would be unchartered and might be useful.
And the other
large area has to do not with this or that particular moral
question, but with the institutional questions. Ted Friedmann
finished his talk yesterday with a kind of plea that we give
some attention to what might replace these various ad hoc
commissions that meet and talk. This has been Frank's talk from
the day of the first meeting.
And that seems to be a way
that at least in the majority recommendation talked about the
importance of beginning to think through ways of surveying this
entire field with a view to what might be done not just by way
of commentary of advisory bodies, but for some institutions that
could see to it that the large questions we carry about are even
considered, monitored and perhaps even regulated for.
But
that's at least where I would be inclined to start, but before
we sort of broke for the summer, I thought it seemed to me we
should hear from everyone and see whether we can formulate some
useful plans between now and September when we come
together.
So with that rather long-winded introduction,
please. Mary Ann.
PROF. GLENDON: Well, on the
enhancement/therapy topic, I would hope that if we choose to
pursue that that we'll let it open out into the questions that
are inevitably involved of allocation of resources, that is,
allocation both of the human resource represented by scientific
energy and creativity, but also allocation of scarce economic
and medical resources.
CHAIRMAN KASS: Frank, please.
DR. FUKUYAMA: Well, I'm going to sound like
a broken record on this, but, as your summary suggested, you
know, my position has been fairly clear that I just think that
councils like this are not going to have very much impact unless
they try to concretely discuss ways of institutionally
embodying, you know, ethical concerns into routine policy
making.
And as the presentations on the HFEA in Britain,
you know, last session, and the Canadian regulatory structure
that they're putting in place indicated all of those bodies had
their origins in a group like ours that issued very concrete,
you know, a permanent oversight board that took into
consideration ethical concerns.
And I think that all of
these issues that we're talking about at a fairly abstract level
having to do with enhancement, you know, versus therapy and so
forth can be given a much more concrete focus if it is put in,
you know, the context of, you know, actually institutions and
how they would grapple with these sorts of problems, and I think
that's one point.
The second point is if you look at the
two in the majority and minority positions that we adopted or
that are contained in our report yesterday, both of them make
regulation central to, you know, their outcomes.
The
first position says the moratorium, among other things, will be
used to think through a regulatory structure.
Position
two says we are not going to proceed with research cloning
unless there's an adequate set of regulatory safeguards in
place. So both of them, you know, push us to move down this
road, and I would be loath to slough this off. In fact, in some
of our discussions about the final report, I mean, there has
been some suggestion that maybe there should be a separate, you
know, commission or something to look at these
issues.
And I feel quite strongly that that should be our
duty, that we should really use the year and a half left in the
life of the Council to look at this seriously.
And this
does not preclude by any means, you know, ignoring any of the,
you k now, ethical issues or have this rich kind of conversation
that we had this morning, you k now, about specific issues, but
I do think that it would help to focus the discussion very much
if we looked at it in these very practical terms.
And,
finally, I want to also endorse, you know, Dan's suggestion from
yesterday that there is a very clear line that moves from
cloning to preimplantation genetic diagnosis and screening
ultimately to germ line, and all of those, I think, could be
dealt with institutionally by the same institution.
I
mean, if you set up a regulatory system to put some rules around
embryonic cloning, that same institution will function to
approve procedures in pre-implantation diagnosis, and it can
also make rules for germ line, and so I think you will not only
deal with the short term problem of how you proceed on cloning,
but you will also set the foundations for issues that you can
see either here, now, as in the case of pre-implantation
diagnosis or over the horizon, you know, with the germ line, and
you'll kill all three of those birds, you know, with a single
stone.
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
medicine.
And remember our Council is a Council on
Bioethics, and therefore, ultimately should be talking about the
ethics of ends, as well as the ethics of means, and I can tell
you knowing ethics councils in various hospitals around the
country, the issue of ends is very seldom their matter. They
function very often accommodatively towards the culture within
which it lives, and I believe that a regulatory body or a larger
element of our country's government that is speaking now about
these matters would deal with issues of means, broadly speaking
in relationship to the things which Frank has mentioned, but
would gradually develop a coherent discourse on ends that I
think is necessary.
CHAIRMAN KASS: Let me ask on the -- sorry.
Gil? No, please, go ahead.
PROF. MEILAENDER: Just a couple of comments.
One of the things I've thought about, and I'm uncertain about
this, and it's undeveloped, but it seems to me at least I've
begun to think there are some topics that you can deal with
better in some settings than others. There are some topics that
you can deal with well if you're teaching a class and you have a
semester to kind of unfold the whole process of reasoning so
that when you get here, you know, you refer back to all sorts of
things that you've done and so forth.
We don't work in
that way and meet in that way, and the enhancement topic worries
me for that reason. I may just reflect my own difficulties with
it. I just think it's a conceptual bog. I mean, I think it's
very difficult really when you go to work on it.
You
know, it's easy to talk about the distinction between therapy
and enhancement. It's very hard to make it out in conceptually
clear ways, and I just register the worry -- it's no more than
that -- but the worry that we might trap ourselves in something
that we can't dig our way out of in the kinds of meetings that
we have.
I would rather see us take a piece of that topic
if we wanted, and I mean, actually Charles had a number of
meetings ago suggested germ line. When we had one of those
sessions on enhancement, he had suggested that, and Dan has come
to that.
In other words, if you focused on one little
piece of it, of course, some of the larger conceptual questions
would arise. You'd have to deal with them, but not as if you
were writing the book that finally clarified the concept of
enhancement, but you know, in the context of a particular
thing.
I just have this strong feeling that we might have
more success if we approached a topic like that in that way. So
that, on the enhancement topic.
With respect to the
regulation topic, not as close to my heart as to Frank's, but
it's fine. I have no objection to it.
There, again, I
think a discussion might be most fruitful if it weren't a
discussion in the abstract or were a discussion of a proposal
perhaps formed by even a subcommittee of this body or something
like that rather than just sort of flailing around thinking
about regulations so that we could see what a proposal might
look like and begin to think more fruitfully about
it.
Because I think there are some serious questions
about exactly what kind of a regulatory body one would want,
whether or how responsive to citizens we wanted it to be, for
instance, and so forth that I'd want to pursue at any
rate.
And then finally, I want to say I have thought for
some time -- I mean, it's not on your list and I guess it's not
on anybody's list right now -- but I actually think that the
whole issue of organ donation, transplantation, sale of organs,
which there's been a lot of stuff coming back about just
recently again is a very important topic.
There's a lot
to be learned about what actually goes on in the industry. It
opens up into some of those wider questions that people were
interested in yesterday, but it still remains. You can keep it
focused on a question like sale of organs, for instance, which
implies all of those issues about the commodification.
I
just think that it's that kind of topic anyway that it seems to
me that we're looking for that can be focused and narrowed while
it still has the broader implications, but I don't think we're
going to write the book about the broader implications on any of
these.
CHAIRMAN KASS: Well, let me ask just to get
clarified on this topic of germ line modification. What does it
actually mean to the people we're talking about? What are we
talking about here? What's the recommendation for this as
something that we should take up?
Could someone specify
what this slogan means? What is it?
Maybe I should ask
Dan what he had in mind when he suggested it was the
natural
DR. FOSTER: Well, I think that if you look
at gene therapy, there's very little controversy in terms of,
let's say, therapeutic somatic cell therapy. In other words, as
Ted was talking about yesterday, you know, you have a disease,
adenosine deaminase deficiency, and you've got a severe combined
immunodeficiency disease where the person has to live in a
bubble or something like that; that you can treat the one
patient.
We've been doing it by injecting the enzyme, but
now it looks like there's been a repair which is genetic. So
that only affects that one person. It changes that one person's
life and has no implications for further generations, either
good or bad.
But on the other hand, if you have a defect
which is not a polygenic defect, like sickle cell anemia, for
example, and you decide, well, we'll just wipe this out by
correcting this in the gonads of carriers of the gene, then that
has, unless this dies out in some sense, that has implications
in perpetuity, and you know, there's a sense that somehow in
evolution the sickle cell gene occurred to protect against
malaria because malaria, you know, was the widest cause of acute
death.
And even though this gave you painful crises and
constant anemia, that was better than dying acutely. Nature said
this is better than dying acutely. So in one sense, because in
African Americans this is a terrible, terrible disease, you'd
say, "Let's wipe it out."
But then, on the other hand,
you might have to think about, well, are we going to then have
resistant malaria, and so we're going to wipe out Africa not
just through AIDS, but through malaria, in other
words.
So there are implications of passing this down
that I think we have to look at, and I think that I have
concerns about some of this. So that's what the thing
is.
I mean, gene therapy has some acute dangers. If you
give too much of the virus, like the Philadelphia experiment and
so forth, you can kill somebody, and it might be in an
individual because genes talk to each other that putting in and
repairing one gene defect, cystic fibrosis or whatever, that it
might have effects to bring out or to, you know, other
genes.
But it's at least in one person, and the risk is
limited to that.
Now, you could also look at the germ
line enhancement theories. I mean, I think Janet's point is that
intelligence and things of that sort are so complicated that
it's not likely to be realistic in the short run, but that's the
general thing, that a single gene therapy is good or possibly
bad for a single person, but does not implicate the race or
something like that.
CHAIRMAN KASS: Is this -- again, just for
the record, these are speculative possibilities that people have
talked about, but if someone where to say, "Well, look. We have
pre-implantation genetic diagnosis." That's something else,
right? That affects the individual that's there and gets us into
some of the usual kinds of questions.
But how realistic
and how likely is it that we're going to see, let's say, in the
next decade or even two any serious attempts at human germ line
modification?
Anybody interested in doing this? And who
would give them permission? I mean, Janet, do you have some --
what would you say?
DR. ROWLEY: Well, I've expressed my views
several times, both in the media and outside of it, that I think
this is extremely unlikely that we will have effective germ line
gene therapy that we would then have to worry about in terms of
its impact on both society, on individual children who might
undergo such treatment, and that there are certainly other
issues that are I would have thought more pressing than this,
and even to take up Dan's view.
So, you know, you think
about gonadal treatment of someone who's a carrier of sickle
cell disease, and then you try to think, well, how would you do
that, and you know, you replace all of the oocytes in the female
or all of the spermatogonia in a male, and if you don't replace
them all, then there is a certain probability that the defective
sperm or defective egg would actually be the one that would give
rise to an offspring.
So I mean, I think this is so
unlikely that we would be wise to wait on a topic like this
until it became more of a reality.
CHAIRMAN KASS: Bill and then Frank.
DR. KRAUTHAMMER: Could I make a response to
that? Is that on the same subject?
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
yesterday.
In other words, as you said, Leon, no one has
really seriously looked at enhancement, and we could contribute
to the future debate about germ line by focusing on the current
debate about doable enhancement through drugs and other means or
somatic genetic therapies.
So I think that would be a way
to go about it. We wouldn't have to focus on germ line, but the
implications would be obvious and clear for whenever it became
doable and necessary.
CHAIRMAN KASS: I'm not sure, by the way,
Charles, that I would say that if I understood what Dan was
saying that you would want to describe germ line gene therapy as
enhancement. You would rather treat it as very sophisticated
preventive medicine, right?
DR. KRAUTHAMMER: Well, but I don't think
that would trouble -- well, perhaps it would, right.
CHAIRMAN KASS: Well, it troubles Dan because
it's --
DR. KRAUTHAMMER: But not for ethical
reasons. For safety reasons.
CHAIRMAN KASS: But those are, as I reminded
weeks ago --
DR. KRAUTHAMMER: No, I understand.
CHAIRMAN KASS: -- it's an ethical question
whether you would --
DR. KRAUTHAMMER: It is, but --
CHAIRMAN KASS: -- inflict this on
generations to come when you don't know what you're doing.
DR. KRAUTHAMMER: But it is less interesting
because the answers are much more obvious. If you can do a lot
of harm for eternity, you probably don't want to do something.
So in terms of therapy, I think it's one thing. In terms of
doing it for enhancement, I think it makes it all the more
difficult an issue.
But I don't see why we have to focus
on that if it is going to be so speculative. We should focus on
what is doable today.
CHAIRMAN KASS: Bill and then Michael and
then Rebecca.
DR. HURLBUT: Well, just one little thought
on this. There is a practical dimension to our asking this
fundamental question of how doable is germ line enhancement or
even therapy at this point. There's quite a lot of discussion in
the popular press and serious books, such as one with a title
that includes "post-humans," have been written on this subject,
and I think it would be a service to our society if we were to
take the insight that Janet has mentioned that a lot of our
images of how genetics work are simplistic based on simple
Mendelian models, based on simplistic notions of disease,
genetic disease, not acknowledging there are actually syndromes,
that there's pleiotropy, which means -- for those of you not
scientifically trained, pleiotropy means one gene does many
things in the body. It's not a one-to-one correspondence between
genes and traits, and polygenic inheritance, which means that
most traits result from many genes operating together.
If
we could acknowledge those two facts, bring them out into the
context of the discussion and make a limited report to the
public on the realistic possibilities and concerns on this
issue, we would at least do a service to the general level
journalistic discussion and maybe help keep science from a bit
of bad press.
I think there's a practical dimension that
I think the scientific community doesn't take seriously enough
in America, and that is the degree to which the popular mind can
turn against science. And look what's happened in England with
genetically modified organisms. It's a significant social
factor.
I suggest that we might want to think about for
this issue and maybe several others, that we should request of
the National Academies of Science some kind of reports on a few
of the scientific groundings of the ethical issues we want to
discuss.
Perhaps we should ask them to give us a report
on what the realistic possibilities are for germ line
modification and then on to the question of whether human beings
could realistically enhance themselves.
CHAIRMAN KASS: By the way, one other general
consideration I should have mentioned at the start and it's
pertinent here is that one of the other things that should
govern our choices is whether there are other people and groups
even better situated and actively involved in this.
And I
do know that some of these questions are part of the thinking
for the next phase of the genome project, and particularly the
ethics component of this.
So that's not to say that we
shouldn't do this, but we should find out certainly how they
plan to proceed along these lines, and I wouldn't be surprised
-- are you not active there, as well, Rebecca?
Yeah,
maybe when you get the -- do you want to speak first?
PROF. DRESSER: Sure. Actually, there have
been some really good reports done recently on this. Well, I
think they're good. AAAS has done a report on germ line
interventions, and there's a book that I think is coming out
this fall by people in that project. That's a very good
resource.
The RAC did an excellent report on prenatal
genetic modification where they explore some of these questions,
and it's really great science. I think that was '97.
So
those would both be good things to look at.
I think
another thing that affects my thinking on this is that I think
we made an implied promise in our report to address some aspects
of reprogenetics, and I feel some obligation to do that. Maybe
it doesn't have to be the next thing, but this morning I tried
to make a little outline of what an enhancement project might
look like, and maybe we could talk about a few different
contexts: the pharmacology, pre-implantation genetic diagnosis,
and then germ line.
I mean, there's a little bit of a
progression there. One of the people say the allegation is that
the demand for germ line modifications will be enhancement
because if you're focusing on single gene diseases,
pre-implantation genetic diagnosis in almost all cases will
provide a way to avoid having an affected child, and you can
still have a biologic child.
So the notion is that the
real market will be in enhancements, and then that would bring
in an opportunity to talk about commercial pressures and
industry influence and that sort of thing.
So perhaps to
meet Gil's concerns, focus on two or three kinds of practices,
one that goes on today, one that, pre-implantation genetic
diagnosis, goes on today, but it's still fairly new and it will
be expanding in terms of conditions that will be the potential
justification for performing it, and then a future oriented
practice where people don't have their established positions,
and there aren't as many stakeholers. So it's easier, perhaps to
influence future policy.
And I think I agree with Bill.
It would serve an important education function because I do
think there's an extreme amount of misinformation out there
about the possibilities.
And then there could be an
ethical analysis of, you know, the concept of enhancement and
using those particular practices as the focus and try to expand
that analysis beyond what exists in the literature
now.
We were talking last night about trying to take a
virtue based analysis approach to this. That would be a little
bit different from what's been done.
And then you could
look at policy and regulatory approaches. You could talk about
-- I think professional regulation is going to be an important
part of any judgments, you know, restraint in terms of how these
things are used.
Individual judgments, how to try to
influence the decisions that people make about when this is
appropriate to use. Even insurance company reimbursement, what
should be covered, and then some sort of regulatory agency that
perhaps should influence policy.
So it might be a vehicle
to try to address some of the other topics that we're also
concerned about, and make it a little more focused.
What
the genome people are doing now is they're just trying to put
together their five-year plan, and they are discussing the
material they will put out in terms of grants, the requests for
proposals and the ELSI program, the ethical, legal and social
implications program invites grant proposals in those areas. So
they're not doing a project. They're just saying these are the
kinds of things we're interested in, and individuals may decide
to do projects on this, but I don't think that they'll be
working through these issues in the way that we would.
CHAIRMAN KASS: Thank you very much. I have
Michael and then Frank. Please, Michael.
PROF. SANDEL: I think we have three topics
here, and as far as major projects, it seems we have time to do
two major projects, but there may be a way to give attention to
all three, and so here I have a concrete suggestion.
On
the question of coming up with a proposal for a regulatory
system that would be institutionalized, it seems to me that's
something that this Council can develop, but I don't think it's
the kind of topic that lends itself to the kind of free ranging
ethical inquiry of the kind that we have had and that we're
really constituted to engage in.
There are a small number
of our colleagues who are experts in this area, which is really
to do with the details of institutional and structural
regulation. There are broad, normative questions, and Gil
mentioned the question of how democratically
accountable.
But what I propose we do there since it
doesn't lend itself to sustained kind of ethical discussion is
to have the people who are experts in that, namely, Frank and
Jim Wilson and Rebecca, work with the staff to develop a
proposal, a concrete proposal for a regulatory structure, and to
devote a session to it here to discuss it.
But the
developing of the proposal is not really something that we as a
body are that well equipped to do. Let the people who are
experts in that come up with a proposal, a concrete suggestion.
Let's devote a session to it, and we may find that that's all we
need or if we need to follow up, then that's always open to
us.
That would enable us to devote our attention to the
two big ethical questions that are really on the horizon and
that we are equipped as a body to do.
One of the things
that this Bioethics Council is able and ready to do really is to
address, as you said, Leon, not just the bioethics of ends -- of
means, but also of ends, and that's really the distinctive
contribution that this group can make. And that suggests two
topics.
One is enhancement. And I think we can do that
because if we ignore enhancement, really we're ignoring the
central question about the ends of medicine and science that's
before the country now and in the next decades.
I think
we can address it in a way that makes it manageable, and I liked
Rebecca's suggestion that we divide it into three parts: drugs,
pre-implantation diagnosis, and genes, genetic
interventions.
And I think we can do that if we take
those three categories, do it in a way, and it will help keep us
from veering off into the science fiction aspects, but the moral
-- the ethical questions about the ends are going to overlap
those three categories, and I think that would be a fascinating
discussion, but also really initiate a public debate on this
question that is looming larger than any other if we're talking
about the ends of science and medicine.
And then the
second, which also has to do with ends, has to do with property
in the body and commerce in the body. We don't need to take
modification as a whole, but if we focus on commerce and
property in the body, we can do it with two
categories.
One can be patenting. What should be
patentable subject matter? And the other can be market exchange.
What should be bought and sold?
I think we should deal
with both of those, not just one of them because the issues will
cut across both, and we can take up those two sets of questions
under property in the body with respect to organs and also genes
and eggs and sperms and stem cell lines, and maybe there are
some others.
The issues may vary as we look to one or
another of those categories, but that's, I think, the kind of
debate that we're equipped to engage in and the kind of debate
that's addressing really the question before the
country.
So I think we should go with our strengths and
with the questions that are really looming largest, and that
would be enhancement number one, property and the body, number
two. And we can do regulation, so to speak, on the side.
CHAIRMAN KASS: Response? There's a kind of
specific proposal here that needs reaction. So Janet.
DR. ROWLEY: Well, I obviously have great
concerns about dealing with a topic that calls itself
enhancement. I do want to take exception to Michael's
description of medicine as focusing on enhancement because I
view medicine as focusing on the treatment and prevention of
disease.
Now, to that extent that you call that
enhancement, but that's not what the general population means by
enhancement.
PROF. SANDEL: No, I agree with Janet, and if
I gave that impression, that isn't what I was suggesting.
DR. ROWLEY: Okay.
PROF. SANDEL: I was saying that we should
focus on what the ends of medicine are not to be, and I wasn't
equating --
DR. ROWLEY: Okay. Well, then I
misunderstood. But I guess faced with choosing between your two
suggestions in terms of, say, priority because they shouldn't be
taken up simultaneously, I would be in favor of the second of
your options and maybe putting the first one aside for further
discussion and consideration.
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 life.
I mean, if you look at -- I hate to bring this
up again. Leon might frown -- but contraception set a new
paradigm for medicine a few decades ago as interfering in
natural life connections. Now, good or bad, that's not the
point.
The point is that is was a change of paradigm, and
that is about to echo forward in all sorts of levels as we gain
mastery over biology to where medicine will become used for
achieving the purposes that people think is in the trajectory of
their life expectations or desires or ambitions.
I think
we shouldn't underestimate that, and one of the things, Rebecca
gave an order of topics and it started with drugs. I think maybe
it would be better to go pre-implantation diagnosis, genetic
enhancement, cellular enhancement, and then drugs.
But
the reason I say that is because we are at the cusp of an
astonishing revolution in pharmacology, and particularly I think
Paul will back me up on this, psychopharmacology. We have now
capabilities for combinatorial chemistry that are synthesizing
and screening drugs by the hundreds of thousands in a month
where it would have taken ten years to do the same amount a few
decades ago, and the number of protein targets that the genome
project is revealing to us on which we can target pharmaceutical
agents is increasing exponentially.
It's said that up to
now we've had 400 to 500 protein targets. These are the
operative sites that our pharmaceuticals operate on, most of
them. We've got only four or 500. Now we're adding some people
estimate 1,000 a year and expect to increase that by 1,000 a
year for ten years.
Now, you can see how that would be an
exponential number of sites of intervention. So we're looking at
a transformed medicine, I think, and I agree with Michael. We
need to get to these issues. The public is thinking about them,
and they are to some extent realistic.
By the way, half
of those pharmaceuticals being developed are
psychopharmaceuticals.
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 the regulation.
I'm
all for regulation, and I'm all for establishing a regulatory
structure, but it begs the question what are we going to
regulate which is a huge issue. I mean it sort of encompasses
everything that we're talking about.
So it's not as if
it's just a technical question. I think the technical question
obviously is doable. A subcommittee working with staff would be
a great idea, and I don't think there'd be a lot of discussion.
People know what regulatory structures work, which ones haven't.
There's history on this.
But the real issue in regulation
is what are you going to regulate. We just spent six months on
whether or not and how to regulate cloning, which is one issue
out of hundreds.
So I'm not sure it will advance us a lot
if all that we establish is a chart with the lines of authority.
We'd have to discuss what's going to be regulated and to what
extent.
So I think in other words, I'm not sure it's
disposable unless it's a merely technical issue of establishing
a body. If it's larger than that, it's a topic that could
consume us for 18 months.
PROF. SANDEL: But that might be a reason to
have them do the technical work and then address the thing after
we do these two topics having to do with ends.
DR. KRAUTHAMMER: But it's not clear that you
can do a generic box structure and then apply it to whatever you
decide you're going to regulate later. It's sort of chicken and
egg here, and I'm not sure how you go ahead with
it.
Perhaps the regulation part ought to be the last
thing that we do at the end of our term when we've looked at
what we decide has to be regulated.
PROF. SANDEL: Yeah.
DR. KRAUTHAMMER: Cloning and sale of organs
and patenting and gene enhancement or whatever enhancements, and
then say, well, these are the new issues of the new medicine.
Here's the structure and here's how it would do it.
Does
that sound okay to you, Frank?
CHAIRMAN KASS: Well, Frank, go ahead.
DR. FUKUYAMA: Well, I think what Michael
said is perfectly right. I don't think this Council can just
take up this issue without any preparation, and so actually my
thought was that the extremely able staff of the Council, which
was able to come up with this thick report on cloning in six
months could come up with, you know a similar draft document
that wouldn't just deal with a narrow technical issue, but would
actually lay out a series of choices in terms of regulatory
options.
For example, do you want to just regulate
cloning or do you want to spread it to regulate the whole of IVF
and, you know, reproductive medicine in general?
I mean,
so there are a lot of choices that the staff does not have to
take a position on, but at least those kinds of choices could be
made.
And I would agree that, you know, the way I would
envision this is that, you know, the staff go to work. I'm happy
to work with them. I'm sure Rebecca and Jim Wilson will as
well.
I'm trying to get foundation support to basically
be working on this, you know, to mobilize a bunch of people to
work on this here in Washington anyhow in the next couple of
years, and to come back in maybe nine months with a draft
document.
But I guess what I don't want is just that it
be one of these tabs, you know, in one of the briefing books
that we discuss for one session. I mean, what I imagine is that
it will be like the cloning report. I mean it will be another
major, you know, kind of product that will come out of this
Council toward the end of its existence.
PROF. SANDEL: Then for the reason Charles
raises we have to discuss the ethics of each of the practices
that would be subject to the regulation, which suggests it
should be at the tail end of this because we won't have delved
into all of those topics.
CHAIRMAN KASS: Yes, and there's, first of
all, the subject matter question, and there's also a question of
if one wants to offer suggestions that might, in fact, be taken
seriously. One really has to be dealing and having a fair amount
of input from the people whose activities one is threatening to
regulate, and that means, in part, the scientific community, but
it also means the industry because the academic scientific
community regulates itself in a variety of ways.
And that
means if one wants to try to be helpful here, one really has to
think about arrangements that would produce the incentives for
everybody to play rather than to treat this as police work.
That's not a modest undertaking for, you know, armchair
guessing. That means sitting down with people and doing it
thoroughly and carefully.
It can't come out as the end
product without an awful lot of work in advance. The importance
of it I recognize, but one needs to go -- even to get started on
it, one needs, you know, a serious working document on what it
would mean to do this right and not simply to call for doing it
without having sort of laid that out.
And I'm not sure
that the staff at the moment has the expertise in this area. The
staff has a willingness in this area, but it would have to be if
we were going to do this, either we would have to go and get
some particular additional staff to work on this or we would
constitute a subcommittee of the Council that staff could assist
in the preparation of something like that.
But unless I
misunderstand our resources, you can't simply say, "Go and
design alternatives that we can then talk about." I mean I think
you really have to -- I mean, I'm not telling you anything you
don't know.
You're setting up a year long or two year
long intense study of this for that reason, and maybe we could
work with you in that group.
PROF. SANDEL: Yeah, some of this could be
done in the work of Frank's group, and then you could connect it
to the staff.
CHAIRMAN KASS: Yeah. Gil. We're going to
bring this to a close because I don't want to keep the public
session waiting.
Please, Gil, go ahead.
PROF. MEILAENDER: Yeah, well, I just note
with respect to this, I mean, it's not impossible for a body
like this to commission work --
CHAIRMAN KASS: Absolutely.
PROF. MEILAENDER: -- from others, too. I
mean, so it doesn't have to be a subcommittee of us or the
staff. We can do that.
The larger point, I still would
like us to think -- I'm not sure that I have the same -- let me
put it this way. I'm not sure that I have the same notion of
what we're best equipped to do. I have to say the last six
months has been a sobering experience in that regard, and I
think we should think about that.
I mean, we tried to
study and speak almost simultaneously in the last six months. We
were talking and writing at the same time. I would just like
somebody, you or somebody, Leon, to think about whether that's
really the best way to proceed.
And I'm not persuaded
that it is. That's all, and to start on another big project that
we did the same way, well, I would just want us to think about
that before we did it.
CHAIRMAN KASS: A couple of comments, and
then we'll -- Charles.
DR. KRAUTHAMMER: I was just asking what's
the alternative to studying and speaking?
PROF. MEILAENDER: The alternative is to
study for -- I mean, one can study for a long time before one
tries to speak or one can say at the outset, "This is what we're
going to speak about. Now let's do it."
You see, you can
either think you know from the start what you want to say and
then, as it were, "write" to it, or you can be entirely agnostic
about what you want to say and just wait to see what
emerges.
And I'm not sure that one or the other of those
might not work better for a body like this.
CHAIRMAN KASS: Alfonso -- do you want to
respond directly to this?
PROF. GLENDON: If I might.
CHAIRMAN KASS: Please.
PROF. GLENDON: Unfortunately I'm going to
have to leave, and I do apologize for that, but I did want to
say that I find myself in some confusion after having listened
to the comments, and I'm mindful of the fact that we won't meet
again for two months.
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 the suggestion.
This is an inconclusive
conversation. There's lots here, but because I might forget
after Alfonso speaks, an assignment, please. Follow up on this
conversation from as many of you as can do this in the next
couple of weeks, if we could have your thoughts about future
directions, with the understanding, of course, that people think
about things that happen in the meeting afterwards and might
come to a different conclusion having thought about
it.
So please --
PROF. SANDEL: Could I just say a quick word
of reply to Gil about the virtues of studying and speaking at
the same time? I think that the discussion now -- Gil may feel
that I should have studied more before speaking, but I think
that part of the exploratory quality in the animation of the
sessions we had reflected the virtues of studying and speaking
and exploring even before we had sort of necessarily taken
positions or thought things through completely.
And so I
think there is some energy in that kind of deliberation that I
think has been a strength of the group.
CHAIRMAN KASS: Thank you. Alfonso, and then
we will break. Mary Ann, thank you.
DR. GÓMEZ-LOBO: I just want to express a few
perplexities. I'm not making any solid contribution
here.
It's clear to me that Charles is right, that any
discussion of regulations and, therefore, regulatory authority
has to come after we have a clear idea of what we're going to
regulate and according to which principles.
Now, the two
great topics, enhancement and commodification of the body, with
regard to enhancement, I must confess that I'm very much at a
loss philosophically as to how to tackle the problem. That's why
I kept my mouth shut yesterday when sports were being discussed
because I really don't have a view of where the principles of
the criteria are going to come from.
And that induces me
to think that it might be wiser to start with the discussion of
property in the body because in a way, I think there are certain
traditional principles that give us some sense of
orientation.
For instance, it strikes me as defensible
that one should not, say, give patents over human beings, for
instance, I mean, for reasons of human dignity, et cetera, et
cetera.
Now, that should extend to different ages,
different stages, et cetera. So I confess that I see some way of
pursuing that topic. I see no way at this moment of pursuing the
enhancement topic, and that would be a good reason for me and
for others to sit down and try to think about it in terms of
ultimately what the ends at stake are, as Paul was
saying.
Thank you.
CHAIRMAN KASS: Thank you very
much.
If we run over, and we've already run into the time
that was allotted for the public session, I have four names of
people who have asked to speak, and if Council is willing,
rather than take a break, if we would allow people to come
forward and speak.
As everybody understands, people have
up to five minutes for their comments. We have a microphone in
the front, and I'd like to first call on Paul Tibbits from the
American Diabetes Association.
Is Mr. Tibbits here?
Please, come forward.
MR. TIBBITS: Chairman Kass and members of
the President's Council on Bioethics, thank you very much for
giving the American Diabetes Association the opportunity to
testify regarding this very important issue.
My name is
Paul Tibbits, and I am honored to represent the association
today. I am not a scientist, nor am I an ethicist. I do bring
one important element to the discussion. I've had diabetes for
22 years, since I was six years old.
As a person with
diabetes, I am very proud to have the association speak on my
behalf as well.
The association sincerely appreciates the
Council's deliberation, but we cannot support the recommendation
that was issued yesterday. In fact, we are extremely
disheartened that the Council has proposed to close off this
avenue of research that holds so much hope for people with
diabetes.
Diabetes is a serious disease, killing more
than 200,000 people every year. In the five minutes that I will
spend testifying, four people will die from it. In the two days
that you have been here, 2,400 people have died from
it.
For many of the 17 million American living with
diabetes, the complications of this disease are already
destroying their bodies. It is a leading cause of heart disease
and stroke, as well as the leading cause of blindness, kidney
disease, and non-traumatic amputations.
This past April,
the association issued a strong statement in support of
therapeutic of cloning research. Like you, the association was
careful and deliberate in its appropriate to this controversial
issue, understanding the ethical and moral dilemmas surrounding
this issue.
The board ultimately decided that the
potential benefits of therapeutic cloning to millions of
Americans with diabetes were too great to ignore.
As it
became apparent that we risked losing this potential
opportunity, we found ourselves in the position of strongly
supporting the Human Cloning Prohibition Act of 2002 proposed by
Senator Specter, Feinstein, Hatch and Kennedy, which would allow
for the continuation of therapeutic cloning research.
The
association affirms this position strongly because this country
is running the risk of driving important research overseas and
placing critical breakthroughs outside of the reach of millions
of Americans.
Therapeutic cloning can be used in a number
of ways to help people with diabetes if found to be successful.
It can create replacement islet cells that can produce insulin.
It can be used to create replacement tissue that would allow
organs, such as the pancreas to once again function
normally.
The powerful advantage of these newly created
cells is that they may eliminate the need for immunosuppressive
therapy, a harsh and destructive regimen that is currently
necessary with islet cell replacement
therapy.
Additionally, therapeutic cloning can improve
the scientific understanding of how stem cells develop, thus
speeding the search for new treatments and new cures for
diabetes and other chronic diseases.
The association
believes that a moratorium is simply the practical equivalent of
a ban. First of all, a moratorium will put potential medical
breakthroughs on hold. Many of the patients suffering from
diabetes do not have time to add four years to the already
lengthy research process. For them such a delay simply means an
earlier death.
A moratorium also sends a wrong signal to
scientists and researchers across the country. It will force
some scientists to leave the country to pursue this research. It
will force others into other avenues of research, essentially
bringing such research to a grinding halt in
America.
This will make it extremely difficult to restart
this whole process once the moratorium does expire.
We
have had a history of proposed moratoria in the past, such as
for recombinant DNA in the 1970s. Instead of placing moratorium,
however, the NIH and the FDA established regulatory bodies to
regulate such research.
As a result of these bodies and
this research, a laundry list of life saving products was
created, including human insulin that helped people like me
better regulate their disease.
A similar solution, one
proposed in Proposal 2 by this Council, would be the best method
for dealing with therapeutic cloning research. It should be
allowed to continue, but the appropriate federal agencies should
be given the authority to regulate such research within a very
strong ethical framework.
This would be the best way of
addressing both the ethical and moral concerns, combined with
the need to save and approve the lives of millions of
Americans.
Many prominent individuals support this
position, including Presidents Ford, former Presidents Ford and
Carter, as well as 40 Nobel Laureates.
I would like to
thank you again for this opportunity to testify. This is a
critically important issue for millions of Americans with
Diabetes, but also for those with a number of other diseases
conditions, including cancer, birth defects, Parkinson's
disease, Alzheimer's disease, heart disease, stroke, arthritis,
spinal cord injury.
The association would also like to
extend an offer to assist the council or the President on this
matter as additional deliberations are undertake. Please do not
hesitate to call upon us as our country continues to consider
this critical topic.
And if you will permit me to, I
would like to take a moment to speak as an individual with
diabetes as opposed to merely representative of the American
Diabetes Association.
I wholeheartedly support there be
cloning research for many of the reasons I just outlined. What
I'm going to do with the following comments is focus on my
personal view of this moratorium as an individual with
diabetes.
I think it's a so-called moratorium, so-called
because it's simply a ban with a semantic alteration. As I
listened to some comments from the Council yesterday, I heard
three distinct reasons that were used to defend the moratorium.
The first was to gain additional time to convince other people
to oppose therapeutic cloning.
In a sort of ironic twist,
this is probably the reason I find the most refreshing because I
find it the most honest and the most
straightforward.
What this ban will do, this moratorium
will do is give opponents of this lifesaving process time to
marshal their forces and their resources in this ongoing
battle.
Fortunately, there are those of us on this side
who will continue to fight just as strongly for the pursuit of
therapeutic cloning, and so the debate will continue, which
brings us to the second reason that was said, which is that it
would allow the country to reach a moral consensus.
For
me, this is probably the most disingenuous statement of all.
Poll after poll has shown that the majority of Americans do
support therapeutic cloning as long as it is strictly regulated.
What other sort of moral consensus do we want to
achieve?
Additionally, has America ever reached true
moral consensus on any controversial issue? Abortion has been
legal for 30 years, yet a vocal minority still fights that
legality today.
Barring the recent circuit court decision
in Northeast, the death penalty has been legal for most of this
country's existence and still enjoys the support of the
majority. Yet, again, a vocal minority fights to eliminate this
practice.
Clearly no moral consensus has been reached on
these controversial issues. No reasonable person, and certainly
nobody with the esteemed credentials held by Council members
here, can truly expect that therapeutic cloning will be solved
or will be the subject of moral consensus within four
years.
Finally, it has been said that a moratorium will
allow us to gather more information. How will that happen?
Through animal research?
The history of clinical research
is ripe with procedures that have vastly different effects on
humans than on animals. The only way to truly learn is to hope
that overseas researchers can provide us with some answers as
they work on human cells.
In hoping for that,
unfortunately, we look morally weak. We admit that as a nation,
we do not have the moral strength to defend the rights of
millions of Americans with chronic diseases. Instead we allow
others to do it. If the results are good, we jump on the
bandwagon. If the results are bad, we decry their work with
moral outrage.
As I have said, a moratorium is truly a
ban. It is a position that after more than 22,000 injections in
my lifetime I find tremendously distressing, damaging and
distasteful.
I hope you can forgive the anger and
bitterness in my comments, but I feel that this decision has
taken a great hope away from me.
If the administration
issues this moratorium, it risks making an appalling mistake as
it abandons millions of Americans.
Thank you very much
for your time and this opportunity.
CHAIRMAN KASS: Thank you very much, Mr.
Tibbits.
Next, Dr. Joann Boughman, please. Please.
DR. BOUGHMAN: Dr Kass and distinguished
members of the Council, my name is Dr. Joann Boughman, a medical
geneticists, Executive Vice President of the American Society of
Human Genetics, which is one of the 21 member societies of the
Federation of American Societies for Experimental Biology called
FASEB.
It's my privilege to provide a voice on behalf of
FASEB's combined membership of over 60,000 biomedical
researchers. We sincerely appreciate the Council's thoughtful
deliberations on the issues of human cloning and the intense
effort we know it required to produce your report entitled
"Human Cloning and Human Dignity: An Ethical Inquiry," and I
thank you this opportunity.
FASEB has clearly stated
strong opposition to human reproductive cloning or, in your
terms, cloning to produce children. We agree with your
conclusion that cloning to produce children is unsafe, morally
unacceptable, and ought not to be attempted. We support your
recommendation of a ban on closing to produce
children.
With regard to cloning for biomedical research,
FASEB has asserted that scientists proposing well designed and
responsibly conducted research using cloning techniques should
be able to continue to pursue this work, including the use of
somatic cell nuclear transfer, or SCNT.
We agree with you
that such research could lead to important knowledge about human
development, and that it may result in treatments for many human
diseases.
It has been suggested by some that adult stem
cells and fetal stem cells, like embryonic stem cells, including
those derived from SCNT, may have enormous therapeutic
potential. We as scientists readily acknowledge that there are
many unanswered questions regarding the success of these
proposed therapies produced from all of these
techniques.
It is precisely because the scientific
community is dedicated to seeking answers to biomedical
questions that we stress that research on all types of stem
cells must continue so that we may determine which sources and
types of stem cells hold significant promise for treating human
disease.
From the scientific perspective, halting this
research process through a moratorium or an outright ban
precludes the required scientific advancements to achieve
success and implementation of these therapies.
We,
therefore, agree with the substantial number of council members
recommending continued research with appropriate
regulation.
The scientific community clearly recognizes
and, in fact, research scientists thrive on differences in
interpretation of data, varieties of opinion and perspective,
and healthy skepticism. The divergent opinions that remain among
members of this distinguished Council, even after this group's
considered deliberation and debate, in our view, serve only to
highlight the need for more substantive information, not merely
more discussion and debate.
That information can be
obtained only through the careful pursuit of responsible
scientific inquiry.
I would finally simply like to
recognize that it is out of respect for human life and humanity
that people dedicate their own lives to searching for ways to
assist others so that they might attain, maintain, or regain
their own quality of life.
Thank you.
CHAIRMAN KASS: Thank you very much. Next,
Dr. Maxine Singer, the Coalition for the Advancement of Medical
Research.
Please, Maxine. Nice to have you with us.
DR. SINGER: It's nice to see all of you.
Good morning.
I have come this morning to represent the
Coalition for the Advancement of Medical Research, which is
referred to as CAMR. I come in that capacity as a member of the
Public Policy Committee of the American Society for Cell
Biology. The Society for Cell Biology is one of the
organizations in this coalition and was one of the founding
members of the coalition.
The coalition includes 70
patient organizations, scientific societies, universities,
foundations, and individuals who have life threatening disorders
and disabilities.
And I'm here to present to the members
of this Council a petition, which I think you've all received,
signed by 2,164 teachers and scientists in medical schools and
universities across the country. The signers come from all 50
states and include eight Nobel Laureates.
The petition
signals that a large group of informed medical and scientific
opinion in the United States does not agree with the Council's
call for a moratorium. The role of science is to discover
answers to the unknown. The moratorium that a majority of the
members of this commission support would, as your member Janet
Rowley said yesterday, be nothing more than four more years of
ignorance.
A four-year prohibition on research in the
United States has ramifications well beyond the four years. The
next generation of American scientists would be discouraged from
even entering the field of biomedical research.
So it's
entirely possible that a four-year moratorium could harm science
in the United States for an entire generation or perhaps longer.
The rest of the world, as the result of the moratorium,
could very well bypass our country, which is currently the
leader in biomedical research.
That's the end of my
remarks.
CHAIRMAN KASS: Thank you very much.
DR. SINGER: You're welcome.
CHAIRMAN KASS: One more, Richard Doerflinger
of the U.S. Conference of Catholic Bishops.
MR. DOERFLINGER: I'd just as soon maintain
separation of church and state.
(Laughter.)
MR. DOERFLINGER: I had a prepared text, but
I guess I'd like to depart from it to say a couple of words
about what's just been said here.
I think it's fair to
say, and past witnesses before this body who are proponents of
research cloning have conceded it as well; it's fair to say that
there is nothing a four-year moratorium is going to prevent that
would not be prevented in any case by the simple, practical
medical and scientific problems inherent in trying to use
embryonic stem cells from cloned embryos in human
beings.
We've heard from proponents before that we may
well be talking about decades before any of this could be used
in humans, and that may even be true of non-cloned embryonic
stem cells because of the problems in tumor formation, chaotic
growth when transplanted into animal hosts, and so on.
In
diabetes, in particular, we know that the latest trials and use
of embryonic stem cells were a pretty abject failure. They
produced two percent of the needed insulin. All of the mice
died.
Maybe that will be improved over the next few years
of animal trials and maybe not, but it's certainly not going to
be something that is prevented by any moratorium on specifically
human cloning.
There are many avenues that are moving
forward now and already helping and in some cases seeming to
cure people with diabetes, including the use of adult islet
cells from cadavers, adult pancreatic stem cells, stem cells
that produce insulin that are originally derived from other
sources like liver, bone marrow, and skin, and even in one of
the recent issues in the New England Journal of Medicine, the
use of monoclonal antibodies simply to make the body's immune
system stop attacking itself so that the body's own natural
resources in adult stem cells can kick back into action and
supply some of the needed insulin.
All of those and more
are far closer to helping human beings with diabetes than
anything from embryonic stem cells or cloning, which so far have
been a pretty complete failure in treating diabetes as fetal
tissue from abortions was a pretty complete failure
before.
I think the moratorium, while it is certainly
something that I welcome because I fear the alternative of
complete inaction, I do not think it is a victory for either
side. I think it does allow a great deal of research, including
research in animal cloning and in stem cell research to
continue, and it allows us all to continue to present our
viewpoints and frame proposals.
One thing I think it also
allows us to do is to continue the debate about what one would
really mean by even a ban on cloning to produce children because
even though there is surface unanimity on this Council that such
a ban is needed, there is on this Council and in Congress a
great deal of disagreement on exactly what that could look like
if one wants to avoid simply producing a ban that has the
government mandating destruction of embryos while allowing them
to be created by cloning.
I don't think the proposal in
the footnote of the majority report of the Council does the job.
I think it may well reduce to the kind of ban that many of us
find morally unacceptable or produce a great many serious
loopholes.
And so a four-year moratorium on all human
cloning also provides us with an opportunity to figure out
whether and how one would even want to ban reproductive cloning
without raising more moral problems than one is trying to
solve.
The other reason for a moratorium that I think is
very compelling is that if Congress and the nation do nothing,
we are, in effect leaving the most irresponsible researchers in
our society who we all deplore free to frame national policy on
this issue by default, to simply present us with a fait
accomplis.
At least a temporary moratorium on all human
cloning is urgently needed now to prevent this result, and I
thank the Council very much for leading the way in proposing
this.
Thank you.
CHAIRMAN KASS: Thank you very much. That
exhausts the list of names that I have for people requesting
public comment.
Our next scheduled meeting is in
September the 12th and 13th. School is out for the
summer.
Thank you very much.
(Whereupon, at 12:05 p.m., the meeting was
concluded.)