The next sessions is, I think, a somewhat unusual session and I hope
a fruitful one. We are going to be discussing Nathaniel Hawthorne's short
story The Birth-Mark and council members know but I would like the public
to know why it is we are undertaking this discussion.
First it does deal with certain important driving forces behind the
growth and appreciation of modern biology and medicine, our human aspiration
to eliminate defects and to pursue some kind of perfection. Goals to which
science and technology more and more have been put into service. But it
also invites us to think about the human meaning of a birth-mark, being
marked at birth. Therefore, it enables us to start talking about bioethics
by locating our current concerns in relation to certain enduring matters
and questions.
Second, I hope, as a matter of process that we can start conversing
at this table not as scientists or humanists but as fellow human beings
thoughtful about these matters and reacting responsively to the story.
Finally, I hope that this will illustrate in case anybody needs persuasion
that there is a wide and wealthy treasury of materials beyond the kind
of literature produced by people like myself that can be fruitfully used
to deepen our understanding of the meaning of biomedical advance.
Now I have asked Bill May if he would be willing just to open up the
discussion of The Birth-Mark with some few remarks and then we can take
it from there.
PROF. MAY:: I do not intend to extract from
the story inferences for any of the policy issues that might come before
the council. The contributions of works of art to public life are largely
indirect rather than direct. Novelists do not bake bread or write legislation.
However, the Hawthorne story may help us recognize the way in which all
major undertakings, those of this council included, sooner or later force
us to reflect on the human condition. A condition which we know first
and foremost not as experts but as participants in daily life so I will
start not with the great public projects associated with biotechnology
but with every day life.
The Birth-Mark exposes as I see it and throws light on two powerful
human experiences. The desire for perfection and the struggle with the
un-elected marks that go with our birth.
We know these experiences chiefly in the setting of the passions and
in daily life particularly the passions of self-love, intimate sexual
love and of parental love. In all three arenas we struggle both with the
yearning for perfection and with the marks of a condition largely given
and received rather than self-created or chosen.
Hawthorne plays out his story in the context of marital love. While
I have untold decades of experience in the complexities of self-love and
marital love, let me spare you comments on these and angle my way back
into the Hawthorne story by reflecting for a moment on parenting.
Parenting entails, as I see it, a double passion in loyalty, both to
the being and to the well-being of the child. Neither loyalty is complete
alone. On the one hand parents need to accept the child as he is. As Frost
said, "Home is where when you go there they have to take you in." Parenting
requires accepting love.
On the other hand parents must also encourage the well-being of the
child. They must promote excellence. If they merely accept the child as
he is they neglect the important business of his full growth and flourishing.
Parenting requires transforming love.
Attachment becomes too quitistic if it slackens into mere acceptance
of the child as he is. Love must wield the well-being and not merely the
being of the other. But attachment lapses into a gnostic revulsion against
the world if in the name of well-being it recoils from the child as it
is.
Ambitious parents, especially in a meritarian society, tend one-sidedly
to emphasize the parental role of transforming love. We fiercely demand
performance, accomplishment and results. Sometimes we behave like the
ancient gnostics who despised the given world, who wrote off the very
birth of the world as a catastrophe. We increasingly define and seize
upon our children as products to be perfected, flaws to be overcome, and
to that degree we implicitly define ourselves as flawed manufacturers.
Implicit in the rejection of the child is self-rejection. We view ourselves
as flawed manufacturers rather than imperfect recipients of a gift.
Parents find it difficult to maintain an equilibrium between the two
sides of love. Accepting love without transforming love slides into indulgence
and finally neglect. Transforming love without accepting love badgers
and, finally, rejects.
E.B. White captured nicely, as I see it, the difficulties of balancing
the two contending passions as they pervade daily life. "Every morning
when I wake up I am torn between the twin desires to reform the world
and to enjoy the world and it makes it hard to plan the day."
It may not be too much of a reach to say that modern science exhibits
the two sides of love suggested here. On the one hand science engages
us in beholding. It lets us study and savor the world as it is. On the
other hand science and the technologies it generates engages us in molding,
in the perfecting, in the project of transforming, amending and perfecting
the given world.
Now why take seriously Hawthorne's story about a scientist caught in
the toils of a one sided passion? He loves his wife but kills her in the
attempt to remove her single imperfection, a birth-mark on her left cheek,
a stain so superficial that "her lovers were wont to say that some fairy
at her birth hour had laid her tiny hand upon the infant's cheek." A superficial
blemish, not a tumor. This husband becomes so obsessed and controlling
that he determines to bring to bear all his learning and resources to
remove this flaw whatever the cost.
Even his plodding earth bound servant recognizes something hysterical,
overwrought, deranged in his project as he mutters, "If she were my wife
I'd never part with that birth-mark."
Aylmer has to take on the challenge of the Crimson Hand because it is
not in his judgment merely a topical blemish. Twice Hawthorne tell us
that the birth-mark is imprinted on her left cheek, a sinister mark as
it were on the left, the mortal side of every living thing, his Georgiana
included. The side on which the heart itself resides, the very fount and
core of life. Life and mortality are sided there together. To remove the
mark of mortality will remove her from life.
In the harrowing dream sequence Aylmer imagines himself "attempting
an operation for the removal of the birth-mark. But the deeper went the
knife the deeper sank the hand until at length its tiny grasp appeared
to have caught hold of Georgiana's heart; whence, however, her husband
was inexorably resolved to cut or wrench it away."
The narrative of the story tells us long before Freud truth often finds
its way to the mind close-muffled in robes of sleep, and then spreads
with uncompromising directness in regard to which we practice an unconscious
self-deception during our waking moments. In his sleep he cries out, "It
is in her heart now. We must have it out." He must do battle with the
birth-mark, "The fatal flaw of humanity which nature in one shape or another
stamps ineffasively on her all productions. The Crimson Hand expressed
the ineludable grip in which mortality clutches the highest and purest
of earthly mold, degrading them into kindred with the lowest, and even
with the very brutes like whom their visible frames return to dust."
Hawthorne carefully locates his story within the central project of
modern Western civilization. He gives us a peak into Aylmer's library.
It includes the work of the alchemists who stood in advance of their centuries
and who imagined themselves to have acquired from the investigation of
nature a power above nature but his library also includes "early volumes
of transactions of the Royal Society in which the members knowing little
of the limits of natural possibility were continually recording wonders
or proposing methods whereby wonders could be wrought."
Aylmer's intellectual forbearers heralded something new in the world.
Whereas the ancient Greeks celebrated the human power for knowledge, the
modern scientist celebrates the powers acquired through knowledge. The
Greeks recognized that reason crashes against limits. The power of fate
and death from without and flaws from within. Reason offers us at best
wisdom in the midst of suffering, not relief from its toils. But modern
science offers the dizzying prospect of the powers which knowledge itself
would generate to alter human life for the good. The ultimate end of which
would be to lift the burden of mortality itself.
I take it that Hawthorne's story is a cautionary tale, not strictly
speaking a tragedy. In tragedy a hero perceives a problem and resolves
to do something about it only when the solution is beyond reach. He eventually
recognizes but cannot undo what he has done. He becomes wise only in the
course of suffering. He cannot eliminate it.
Hawthorne's scientist never achieves such recognition nor do the two
passions of saving and savoring mercifully restrain and qualify one another.
He loves Georgiana but the passion of savoring his bride shifts into the
drive to save her. "I even rejoice in this single imperfection because
it will be such a rapture to remove it."
In a sense his wife alone reaches the moment of truth. Georgiana tells
him after he has given her the toxic cure that would at long last remove
her birth-mark, her mortal life, "My poor, Aylmer, you have rejected the
best that earth could offer. Aylmer, dearest Aylmer, I am dying." But
the story breaks off a few sentences later without Aylmer suffering achieving
this "profounder wisdom."
Hawthorne's story posts a warning about a one-sided passion which his
hero does not decipher.
CHAIRMAN KASS: Thank you.
Discussion?
Bill, thank you very much.
Please, Gil?
PROF. MEILAENDER: I just want to flag something
that Bill did not particularly mention but that relates to what he mentioned
and that interests me, and it is the assistant. What is his name? Aminadab?
Yes.
He is specifically described as representing man's physical nature in
contrast to Aylmer as no less apt a type of the spiritual element. And
I do not quite know what -- you know, what exactly to do with that. There
is a certain sense in which the person who represents the animal nature
here sees more clearly than the person who represents the spiritual nature.
At least he says in the passage Bill mentioned "that if she were my wife..."
you know "...I wouldn't get rid of the birth-mark."
And I do not know whether -- exactly how to take that. Whether the animal
nature is to be more trusted than the spirit or whether the animal nature
divorced from the spirit perhaps. I mean, whether really we need the two
together. I do not know where to go with it exactly but it is -- and I
would welcome clarification, in fact, but it is a very clear contrast
that is made. That is exactly how he described it several places and he
is the one who, in fact, has insight in a way.
CHAIRMAN KASS: Mary Ann?
PROF. GLENDON: It is interesting that in the
first sentence Aylmer is described as a man of science but by the end
of the story he has the reader questioning about how much of a man he
is and also how much of a scientist he is. In the end he seems to even
betray his science by moving into rash experimentation when he has had
indications that a scientist would pay attention to that this is perhaps
not a wise route to pursue.
Gil, I would not have described the dichotomy between the earthly and
spiritual. I think it is more the pure intellect. A good thing. The unrestricted
desire to know a good thing but Aylmer somehow has made himself into a
certain kind of person by neglecting other dimensions. He is presented
to us as somebody who has from early youth insulated himself from the
world. He has taken himself away from ordinary human experiences.
I was interested that Bill brought up the issue of parenting because
it seems to me what would Aylmer have done if there had been reproduction
here. He certainly would have been a person who wanted a perfect child
but before he even got to that he probably would have been upset by the
messiness of child production.
So it is a story -- I think you quite rightly said, Leon, that it is
not a tragedy. He is not a tragic hero. He does not rise to the level
of a tragic hero. He is somebody whose defects actually render him something
less than fully human.
CHAIRMAN KASS: Does everybody agree?
PROF. MEILAENDER: Can I respond just slightly?
CHAIRMAN KASS: Please.
PROF. MEILAENDER: I do agree in large part
but on your reading, Mary Ann, how do we account for Georgiana's high
estimate of him? Is she just mistaken?
PROF. GLENDON: Well, I puzzled about that,
too. He is somebody who is treating her as an instrument and an object
but she is somebody who is allowing herself to be treated that way, cooperating
with it. That is a bit of a puzzle to me.
CHAIRMAN KASS: Stephen, I am sorry.
PROF. CARTER: Well, just on this point, I
think that Aylmer -- if we look at Aylmer as divorced from, in some sense,
ordinary human concerns and the risks of intellect and so on and if you
look at Aminadab as representing the voice of instinct, the voice of ordinary
experience, the voice that a person with common sense as opposed to the
person leading a life of the mind would express, I think that we can look
at Georgiana as she does not have to be pure instrument. From her own
point of view she is perhaps the -- to be the beneficiary of the research.
And the reason I think this is part of Hawthorne's point, if you look
at page 776, when she first enters Aylmer's laboratory his response is
quite striking down near the bottom of the page. "Why do you come hither?
Have you no trust in your husband?" Here is the voice of authority saying
I know what I am doing within my realm. There is no reason for you to
intrude. If you simply let me go on and do my work uninterrupted, trust
me to do what I do best, you will at some point benefit but in the meanwhile
let's have a separation between your effort to find out what I am doing
and the actual benefit you are one day going to receive.
So I think that Georgiana and Aminadab are two types of those outside
of the life of the mind, at least outside of the life of the mind as the
person in the story living life of the mind, Aylmer, conceives it. One
is the voice of every day experience, which he plainly thinks it is not
only irrelevant but somehow brutish, unsophisticated and not really to
take into account. He never even engages with these little asides of Aminadab.
That is error one.
And then the second, the potential beneficiary of the research itself
is treated as an intruder when the beneficiary wants to know what exactly
are you really doing. You ought to simply trust in me.
CHAIRMAN KASS: Does everybody -- Gil raised,
it seems to me, a point about his motives. I think -- I mean, on the face
of the story one recoils, I think, from his activity yet she does in several
places, and I am not sure whether she is speaking ironically, speak in
somewhat praiseworthy terms of this exploration. One on 777 where she
-- after his departure she is musing and she considers his character.
"Does it completer justice than at any previous moment. Her heart exulted,
while it trembled, at his honorable love, so pure and lofty that it would
accept nothing less than perfection, nor miserably make itself contented
with an earthlier nature she had dreamed of."
And then in the last remark just being saying that he has rejected the
best that earth has had to offer, says to him, and I am -- I tried not
to read it, "You have aimed loftily -- you have done nobly! Do not repent,
that.."
And I guess the question is -- and maybe the scientists in the room
especially but anybody -- does one simply want to reject out of hand?
I mean, Bill May did give us, I think, both the distinction between saving
and savoring. I mean, is the impulse to save in this story simply repulsive?
Or does one have -- does anybody have any sympathy with --
PROF. MAY: It is one sided. It is one sided.
CHAIRMAN KASS: Indeed.
PROF. MAY: And, therefore, repelling in its
one-sidedness it seems to me but not repelling in the sense that it is
to be eliminated as part of the poles in which we live. At least that
is my way of reading it.
CHAIRMAN KASS: Stephen, did you want to come
back?
PROF. CARTER: Just a very small point. It
is not entirely repulsive. I think that is part of the point of Georgiana's
response. It is also seductive. That is the confidence that the world
can be changed or that we can be changed, something can be changed for
the better through the life of pure mind, in effect through the life divorced
from other concerns, is seductive. There is a line I remember from years
ago from Spiro Agnew who said, "You do not learn about poverty from people
who are poor but from experts who have studied the problem." And I think
that is what -- that is the very seduction that you see in the story.
CHAIRMAN KASS: Bill?
DR. HURLBUT: It seems to me that what is going
on here is setting up a kind of false persuasion of what circumstances
-- the real circumstances of human life are. Somebody in this room has
said "desire not DNA is the deepest principle of life" and, if so, the
character of our desires is increasingly going to shape the future. Having
been constrained through evolution now new powers are coming forward.
The question is what do we do in this situation where there is a sense
of imperfection? How do we respond to a world where you cannot, metaphorically
speaking, un-bite the apple? In the sense that we have a real reality
of suffering, struggle and sacrifice and expectations and aspirations
towards something greater. Do we use our science now to try to satisfy
that or do we recognize that even within that order of reality there is
something of deep significance going on that may be more perfect than
what we can design as thinking rational beings?
He speaks at the end of his story of the shadowy scope of time, the
perfect future within the present, and living once for all in eternity
already in this earth. The point being that we could easily try to remark
our world and walk ourselves right off the stage of the drama of our deepest
significance.
I had a student once say to me, and here I am thinking in terms of remaking
or setting humanity just the way we think it would be optimal, I had a
student once in a moment of great struggle personally say to me, "My parents
gave me everything except an excuse to fail."
CHAIRMAN KASS: Mary Ann, come back.
PROF. GLENDON: I wonder if anyone else was
struck by the sentence on 774 where Georgiana starts reading Aylmer's
journals and discovers in his records of his own experiments material
which according to Hawthorne "makes her feel less dependent on his judgment
than ever before." She has lost faith in his judgment as she reads his
records but does not lose faith in him. In fact, on the next page she
"worships" him. I think that word is quite significant.
And another sentence that struck me on 774, she says, "He handled physical
details as if there were nothing beyond them, yet spiritualized them all."
So it is as though his one sided development of one aspect of what it
is to be a human being has caused him to worship what one might call a
false god. And she has become aware of the defect in his judgment yet
worships him.
CHAIRMAN KASS: That does not make any sense
to you.
Rebecca, please?
PROF. DRESSER: I noticed that part 2 and also
towards the bottom of 774, "She could not but observe that his most splendid
successes were almost invariably failures..." And I guess --
CHAIRMAN KASS: Finish the sentence.
PROF. DRESSER: "...if compared with the ideal
at which he aimed."
CHAIRMAN KASS: Yes.
PROF. DRESSER: So here she has the awareness
that he has failed in his aims many times and also she begins -- at the
beginning of the story she is not ashamed of the way she looks and she
then comes to hate this birth-mark more than he does. She says, "More
than he does." So I guess I am frustrated with her but also I think it
shows the persuasive power of these kinds of dreams.
And I suppose I am trying to make this more concrete than I ought to
but I am guess I am thinking, well, what would I say if I were going to
try to talk to Georgiana and the scientist as well to communicate, you
know, my disagreement with the way they are looking at this. How could
they even hear a different message?
CHAIRMAN KASS: Paul?
DR. MCHUGH: Well, I had some very personal
reactions to this story primarily because of a different age when I read
it. I read this story years ago when I was a teenager and it made me shudder.
I mean, it was just awful. And I had completely forgotten this story until
I began reading it and then I remember the little hand and that was --
I said, "I bet it is going to be about the hand." And when it came up,
I said, "Oh, yes, I remember this."
And then the interesting thing to me, of course, is then I read this
like a psychiatrist would read it. Not as the teenager who read it and
shuddered about it but then as a psychiatrist would read it and these
issues that Mary Ann and others are bringing up and you are bringing up.
Of course, a psychiatrist, you know, the contemporary era they -- you
know, you just understand it. Not only do we understand it but we have
got words for it, Mary Ann.
(Laughter.)
DR. MCHUGH: Her willingness to throw herself
into this matter is called by the people in the psychoanalytic persuasion
"identifying with the aggressor." You know, that you have just gone along
with the aggressor to the point where you become part and think of it
in the same way with him, that you develop a defensive reaction.
And, you know, I am not sure that -- and by the way the other thing
about the dream, again reading it as a psychiatrist, you see that this
-- Hawthorne, he does not read it like a Freudian. He reads it like a
Jungian. And the difference is that the Freudians think the dream obscures
your real motivation and the Jungian says the dream shows you your real
motivation. It is the true -- and he says that he -- he says that he appreciates
his unconscious self-deception when he is waking and his dream shows him
what he really appreciates he is going to kill her in the process of doing
this.
And then -- so then I had this sort of sense -- here I read this as
an old chap and a psychiatrist, and I think the teenager was better. He
saw --
(Laughter.)
DR. MCHUGH: He saw this story more correctly
and we could lose the shudder aspect of it as we begin to know more about
human -- more that human psychological science brings us -- takes us away
from the ability to really shudder at this awful thing that this man did
and to some extent she was trapped into collaborating with.
CHAIRMAN KASS: That is very interesting. Jim
Wilson?
DR. WILSON: My daughter was born with a birth-mark.
It has not in the slightest degree affected how I or her mother care for
her. It does not affect in the slightest how her husband cares for her
or how her children care for her. I regard Aylmer's behavior as absolutely
outrageous. I am a perpetual teenager on this subject. I do not know whether
she identified with the aggressor or not. I am somewhat at a loss to explain
her behavior but I find Hawthorne's story unsettling and in a degree appalling.
CHAIRMAN KASS: Michael?
PROF. SANDEL: I do, too, but the question
is what is it that is appalling. And one answer which maybe is the obvious
answer is that this is a parable of the folly of perfectionism, the aspire
to perfect what nature has given us. It is a parable of the folly of despising
the given. That is one description of why we find this appalling but I
wonder if that is the best account of what is repulsive about the story.
I am not sure that it is, in part, because it is not so clear in this
story whether this birth-mark really is a defect we should take seriously
or not. It seems trivial, like a trivial defect, so, of course, a scientist
who tries -- who goes to mad lengths to remedy it is crazy and repulsive.
So that -- but if it is trivial then it is not a test of perfectionism
or of the given at all. That test could only come if this was really a
serious defect. Suppose the birth-mark were one leg significantly shorter
than the other but that would raise a question about what it means to
respect or to despise the given because the given can take two forms.
There is what appears to be given and there is the telos that is given
in the sense that what is given implicit or is a gift to be realized,
a potential to be realized, and in struggling with what counts as the
given the second is always a possibility that we have to take seriously.
In this case if it really was a serious, not a trivial defect as a birth-mark,
then to realize the telos, in this case the beauty or the full human functioning
or the highest human possibilities of this particular woman, then some
cosmetic surgery or in the case of the short leg it would not be merely
cosmetic surgery, would not seem quite so mad.
Or suppose another way of trying really to get at whether this is a
parable about perfectionism and the given or just about misidentifying
in this case the defect or the beauty, suppose she just needed orthodontia
and suppose the means of orthodontia in the time were not to go to get
braces but to consume some potion that a sorcerer would devise. Would
it be as repulsive as this story is?
CHAIRMAN KASS: Jim, do you want to respond?
DR. WILSON: Could I?
CHAIRMAN KASS: Yes, please.
DR. WILSON: I would say the answer to that
is yes.
CHAIRMAN KASS: Yes, I was about to say yes.
DR. WILSON: I mean we are talking not only
about what is repulsive and what is merely a disfigurement and what does
not count, we are also talking about science. And the notion here is that
this lone scientist, loony by my standards, has concocted potions that
have not passed any test. The Food and Drug Administration has not been
heard from. There are not ten other cases beginning with animals going
up to humans in which it has worked. He in his zeal and his madness persuades
her to drink something that kills her. That to me is among the many reasons
I find his behavior so deplorable.
Now you could say, well, in his time we do not have science and there
was not a Food and Drug Administration, and there was not a Journal of
the American Medical Association. It seems to me the lesson you take from
those times is that we do not know how to change these things very well
and when we do not know in some meaningful sense of the word "no" we ought
not to try.
DR. KRAUTHAMMER: If I could just say -- Leon,
over here, it is Charles.
CHAIRMAN KASS: Sorry.
DR. KRAUTHAMMER: It is appalling because he
is not a scientist, he is a narcissist and he kills her for the most superficial
of reasons. I mean, literature is replete with examples of people who
kill the object of their love and the reason that we shudder and we do
not have sympathy and a sense of tragedy as we do, for example, in Othello
is because his reasons are absurd.
And what is striking to me, also, is Hawthorne's notion of what science
is, this man is not a scientist as we understand it, he is a magician.
He is a tinkerer, if you like, at best. This is not science. This is magic.
And that is why I think it -- I am not sure how closely or how it translates
into modern times. Today we think of a scientist as a person who is far
more analytic, who does stuff because he wants to understand how things
work, and then later he will manipulate.
What Hawthorne calls science here really is not what we would call science
so I feel rather distant from this story and although I do share Jim's
repulsion. I think that is the -- there is a coldness here that I think
is what makes it repulsive.
CHAIRMAN KASS: Well, let me try and see if
I can bring it a little closer without getting rid of the repulsion. And
it goes to the question of whether this birth -- whether the birth-mark
is superficial and why don't we spend a couple of minutes on the question?
I mean, this could have been any other imperfection that could have led
to the same thing. Hawthorne has chosen to treat the birth-mark, a mark
that was somehow connected with birth. And I guess the question is what
is a birth-mark? It seems to me you cannot decide whether this is madness
fully until you have sort of thought through what kind of a defect is
a birth-mark really in addition to being the mark of this little hand.
DR. KRAUTHAMMER: But as Hawthorne himself
implies, it is a superficial defect of appearance that is trivial enough
that all her other lovers had either overlooked it or found it almost
charming.
CHAIRMAN KASS: Mary Ann?
PROF. GLENDON: I wonder -- in the beginning
he says, "Deeply interwoven with the texture and substance of her face."
That is in the first part.
CHAIRMAN KASS: Right.
PROF. GLENDON: And then it goes on that it
maybe goes deeper. It is not even just the texture and substance of her
face but the texture and substance of her being.
CHAIRMAN KASS: "A spectral hand that wrought
mortality." I mean that does not sound superficial to me and in some way
connected to the heart paradoxically.
DR. KRAUTHAMMER: But there is no evidence
that there is anything in her character, her being, her soul, her spirit
that is defective. In fact, she is presented as a rather angelic being
so how else do you interpret her defect if not superficial?
CHAIRMAN KASS: Robby, on this, please?
DR. GEORGE: I do not think that it matters
in the end whether it is superficial or not. Hawthorne knew and we know
that different people and different cultures have different conceptions
of what human perfection would be. It is not as though there is some common
conception of perfection and it will be against that ideal that any particular
individual will assess imperfection. In the literature of bioethics one
encounters frequently discussions of defective human beings. Most often
in relation to infants where you will see references to defective infants.
What will we do about defect infants? What is legitimate to do about defective
infants?
I must say that I recoil when I hear such language used but at the same
time I recognize that there are human defects. Whether the birth-mark
counts as a defect, and we can debate Hawthorne's meaning there -- I think
Mary Ann made a good point in calling our attention to the passage she
just quoted -- but whether or not we treat that as a defect, plain Michael's
example of a child born with one leg shorter than another, that we can
call a defect. And, of course, there are much more serious defects even
than that. A child born with severe retardation. A child born with a massive
deformity say of the face. Things that will profoundly affect people's
lives as they move forward.
Yes, it is not unreasonable to speak of these as defects but I think
it is just profoundly important that we not make or move as a culture
towards identifying the worth and dignity of the human being with the
absence of such defects. A child is no less equal to the rest of us by
virtue of being born even with a severe deformity, whether that deformity
is mental as in retardation or physical as in being born with one leg
shorter than another. So that whatever attention we give to trying to
remedy that defect it should be given with an understanding of the child
or the individual, the person himself, being the end to which the administration
of any therapy or remediation is merely the means.
I think that Aylmer has simply lost sight, if he ever had in grip, an
understanding of Georgiana, perhaps people in general, as worthy intrinsically
-- as having an intrinsic dignity that was not dependent, that was not
conditional upon their specific attributes which may or may not, according
to any particular standard, be rightly judged to be defective.
So the message I take away from the story is you will really go off
the rails, whether it is in the name of science or any other ideal, you
really go off the rails when you miss -- when you fail to understand human
worth and dignity as an inherent and intrinsic thing and understand it
in some other terms such that human beings become mere means to other
ends.
DR. ROWLEY: I just wanted to come back and
echo the statements of both James and Charles that in no way should we
equate Aylmer with -- and what he does with science because he is just
not a scientist in the way he approached the problem intellectually or
then experimentally in terms of trying to evaluate the treatment and its
potential outcome in terms of a whole series of experiments. So I think
it is absolutely essential that we recognize that if one wants to use
the term "science" in regard to this that bad science is likely to have
bad outcomes.
CHAIRMAN KASS: Go ahead, Stephen, and then
Dan.
PROF. CARTER: Just a small point. I think
I would disagree with two aspects of the sense around the table, respectfully
disagree. I do not think that it matters much whether we think that Aylmer
is a good scientist or a bad scientist because I do not think it is a
story that is about science, whatever else it may be about.
When we ask what repulses us about it, it cannot -- I assume it is not
the case that we are repulsed because he is trying to work a change in
the physiognomy somehow of his wife. We do that all the time. Some of
us are repulsed by it in many other cases as well but that is something
on which certainly reasonable minds may differ.
It also cannot be the case that we are repulsed because the treatment
does not work. That is you can imagine the same story and at the end she
leaps up, she is happy, she dances a jig, her face is now the way that
they both wanted it to be, and they live happily ever after.
It strikes me that Aylmer -- that the problem Aylmer poses to us as
a character is the same whether the treatment works or not. If he is working
in accord with all of the understood norms of his profession of that day
or of this day it is still, I suggest, his very obsessiveness, his --
the obsessiveness and the arrogance with which he goes about it, the very
single mindedness that sometimes is necessary to solve a problem in the
end can also be terribly repulsive when we see it in the context of a
single kind of disconnected human being as Georgiana is here presented
to us because we have no -- neither one of them is presented as part of
a larger community, family thriving in any way.
The obsessive control of one individual over another, the obsessiveness
about this characteristic is a problem for us or ought to be equally repulsive
whether the treatment succeeds or not.
CHAIRMAN KASS: Dan, and then Jim.
DR. FOSTER: Well, I do not want to digress
too far from the story but I also do not want us to -- I do not want to
sit as sort of a judgment committee about what this means and it certainly
should not translate, I think, into an attack on science.
I hang around with a lot of scientists. I sort of want to be a physician-scientist
myself. And I do not hear many of them talking about, you know, some sort
of salvation from all illness and so forth. The rules of the physician
are pretty simple, pretty pragmatic, after competence what we say is we
are trying to prevent premature death when that is possible. We are trying
to alleviate symptoms when cure is not possible. And we try to comfort
always.
I do not think most of the scientists that I know have some grandiose
scheme of doing away with all imperfection. Maybe somebody wants to end
mortality but mostly they are just talking about advances that might be
helpful to the community at large.
I think by and large they tend to be good people. They are like all
humans. They have got flaws and we make terrible mistakes. We kill young
people with adenoviruses when a disease is not serious enough to warrant
a gene therapy but most of them do not have grandiose schemes. I am not
really too worried about the scientific community being without common
sense.
We have got four active Nobel Laureates at our place and we have talked
about this quite a bit.
I actually am more worried, and Bill may have mentioned it earlier,
not about the scientific community but about the changes that the market
contamination has made on science because I have been around long enough
to remember when basic scientists would not do anything that had clinical
implications. Janet will remember this. I mean, it was pretty nerve racking
if you worked on a slime mold. You know, that was too advanced. Now every
basic scientist is talking about the cure of disease. Why is that? It
is because the market has contaminated it to make money.
I am much more worried about the technology driven by the market system
to do all these things in the hopes of making money than I am about the
scientific community trying to change the nature of humans.
So I would just ask that as we consider all these things we do not make
phantoms of some community that is designed to end the world as we have
always known it but I am very worried about the contamination of science
and scientific medicine by the market. That is where I think we have to
be worried about people who might want to manufacture humans if one wants
to use that term that has been tossed around.
So I guess what I am trying to say, and not very well, is that I do
not think we ought to use a scientist who has abandoned science and become
an evangelist as a model of modern biomedicine, which is dignified and
has goals that are achievable that want to help human beings but not take
over the world.
I want to say again I am very worried about the market. It is not just
Enron, you know, that is driven by greed and this market is driven by
greed. And scientists that I truly admire spend more time on their companies
and do not do that. So it is just a minor point. I do not know whether
I made it well but I just want to avoid judgmental attacks on -- I do
not mean this as an attack but I mean I think we ought to avoid the assumption
that scientists are like the protagonists in this story.
CHAIRMAN KASS: Gil?
PROF. MEILAENDER: While I hate to be either
judgmental or attacking but there are a lot of motives in the psyche besides
greed and I want to come back to the terms Bill set -- Bill May set at
the start, the savoring versus saving, transforming, and a few of you
know, of course, that I am actually generally on the savoring rather than
the saving side of this.
But it seems to me that -- and Stephen Carter raised the question of
would it make any difference how the story ended sort of. The really interesting
question is whether there are clues that we can tell in advance in the
story, whether you read the story and you can really find things. I mean,
he mentioned obsessiveness. Charles mentioned narcissism, for instance.
How do we know in advance -- that is the really interesting question --
whether it would be useful to undertake something like this or not?
And the truth is that there are a enormous number of promises being
made in the public realm about what science can do. And when we take them
one at a time we have a hard time getting to the deeper question that
the Hawthorn story is intended to raise. How do you know in advance of
any single attempt that something is going to go wrong, that she will
not get up and dance a jig at the end but, indeed, will die?
It seems to me that is a question the story raises that we ought to
take seriously.
CHAIRMAN KASS: Jim Wilson?
DR. WILSON: Suppose we update Mr. Aylmer and
bring him into the 21st Century and he now has a Ph.D. and teaches at
a leading university as a scientist and biologist. He is a consultant
to a major gene technology company and on the basis of prior animal and
some human researches he believes there is a reasonable chance, though
no guaranteed certainty, that by in vitro -- by intrauterine action or
by gene transplants he can done one of more of three things. First he
can reduce significantly the problem that the child will have a birth-mark.
Secondly, he can reduce significantly the chance that the child will have
one leg shorter than the other. And, thirdly, he can increase the probability
that the person can dunk the basketball from outside the free throw line.
Now this is where it seems to me this committee eventually is going
to be. Do we think that interfering with unborn life to achieve any or
all of these objectives is legitimate? It seems to me that that is not
a easy question to answer. If there is a therapy that has presumably little
down risk and much up side benefit that will prevent the birth-mark from
appearing, I think the public desire to do this will be overwhelming.
If it has to do with making one leg the same length as the other, I
think the public will be remarkably supportive.
What happens, however, if what we want to do is not remove defects but
enhance abilities by increasing IQ or being able to get them to be the
next Michael Jordan, or if you prefer the next Pamela Anderson? That raises
a very entirely different sort of question.
So when we talk about this as being a story about science, we should
update the science but then we should not lose track of the issue of what
are people's responsibilities toward life. Is enhancement, the elimination
of defects acceptable or not? Is improvement, the increase in ability
beyond what you would normally predict acceptable? Because I am convinced
that by the end of this century all of these things will be possible.
CHAIRMAN KASS: Bill Hurlbut, and we will move
toward -- I am going to break this off so we can leave time for the next
paper. I want to comment, too, after this.
Bill, please.
DR. HURLBUT: I want to follow up on your comment
in support of science for sure but with a cautionary note. I, too, believe
that market forces will drive all this and commercial interests but market
forces ultimately respond to human desires or they do not have much traction
in human life. It seems to me that increasingly we are moving into a social
reality where people have expectations of satisfying their desires through
technology, through medical intervention.
I think at the heart of this story at least from my reading of it is
the question of the meaning of suffering and imperfection in life and
the role of science in relationship to that. If you look at life from
different perspectives you see it very differently. If you look at it
from a particular evolutionary perspective as though it is generated by
certain types of forces you see it one way. If you see it as initiated
and produced by a benevolent force you see it differently.
But either way we are caught in this strange middle space between desperation
and aspiration. We are caught between what the author speaks of as the
fatality of the earth versus the immortalescence (?) of a higher state.
The question is how do we attain that higher state and what does it
mean that it beckons forward? Yes, there are scientists who are aiming
for immortality. I will quote you William Hazelton, head of genome sciences,
marking the creation of the Society for Regenerative Medicine, said, "The
real goal is to keep people alive forever."
And so to me the real question is how do we see perfection in this strange
order of suffering that we live in? Is this a meaningful reality? Is there
an essential eternal issue being played out here in the shadowy scope
of time or is this somehow just a random collocation of chemicals? Kind
of a coincidence within a chaos. As the cosmetic surgery becomes the paradigm
of the new medicine the question is how do we seek perfection? It has
been written "be ye perfect" but to my mind that means not perfect in
physical form but perfect in love.
DR. FOSTER: I know you want to finish this
up. I just want to quickly respond in just one sense. I agree wholeheartedly
with what you say. I also agree with what Jim said over there. And I know
what Bill said about immortality. I know those things are true and I know
the problems about enhancement and I am sure we will talk about suffering
and all of that.
But I just want to try to keep this at a -- you know, that we have a
practical level about that. And one of the things that I wanted to say
in response is that if you -- everybody around here is talking in theological
terms and, you know, if there is one palpable sin of the scientific community
and the media that reports it is the hype with which these techniques
have been sold to the public where they think that there will be gene
therapy available in a year or two or all of these things, and that is
a terrible sin that the scientific community often times in hopes -- when
they work for a company -- to sell things up is -- we have to avoid.
And the fact that newspapers every Thursday or something bring the latest
reports of what I call "not the importantly new but the trivially new"
and a lay person reads it and cannot understand it, that is a terrible
fault. I jokingly use the term "sin" but it is a terrible fault and we
need to avoid that. I mean, we the scientific community need to avoid
that and have realistic voices there.
CHAIRMAN KASS: Thank you. I think what we
probably should -- Paul, briefly?
DR. MCHUGH: It is hard to brief on this important
subject. I just want to come back to the shuddering business that I think
we are all talking about. What was it that still makes you shudder in
this case? And I think that the issue really for me anyway was from the
beginning this idea of the arrogance of authority and essentially the
momentum of its presumptions that overwhelms the moral sense to the point
where even an awful result does not register. And in that sense this is
a tragedy not about these figures here but for our assumptive world where
the arrogance of authority can be such that even when death and destruction
arises we eventually come to say, well, gee, that is just what happens.
I thought with Gil at the beginning, right from the beginnings this
story led you to shudder because you saw the inevitability of what was
going to happen. Not only though the death but that these people were
not going to get it even when they had it, and that was my reaction.
CHAIRMAN KASS: Indulge me for just a brief
comment and then we should break because we want to spend the time for
Gil's paper.
On the matter of the birth-mark, the birth-mark is something which arrives
with the fact of being born in the world, a contingent event, and it is,
therefore, a sign of our finitude and limitation. The birth-mark, though
it comes with our birth, is, as the story repeatedly points out, a mark
of our mortality and our finitude.
And he says, "The bond and the spirit in the mortal form." It really
is something that indicates our limitations. And a question, I suppose,
is whether one could really, in fact, love something wholeheartedly in
an idealized sense if it were not perfect and is mortality for at least
some people a sufficient blemish, which you start by saying, "We will
remove the tumor or we will prevent premature death," but when we get
very good at that the question is what kinds of deaths are not premature
when the desire to live knows no bounds.
And it does seem to me that the desire to remove this birthright (sic)
means the desire for a mortal being not to be and, therefore, to go after
the birthright really means he must kill this woman. It is not that there
is another alternative at the outset. The desire to make her not mortal
is a desire to wish her out of existence which he, in effect, does by
this effort.
I do not think the sign of the birth-mark -- the sign is superficial.
What it means is deep and the attempt to go after the human condition
to save it completely and to save it even from its mortality -- which
was by the way, Janet, part of the aspiration of Bacon and Descartes in
the founding of the Royal Society. It is not just Hazeltine but it has
a long pedigree -- means that while they do not follow the scientific
method here, there is something in the culture at large and something
in medicine today, however modestly practiced, that almost says, "Look,
we will never stop until we can deal with mortality as such." The question
is, is that a worthy aspiration or is there something that necessarily
gives rise to shuddering as a result of our efforts to do that? I think
to that extent without impugning any particular group of people, I think
that remains a deep question for us as we look at various kinds of efforts
to improve this or to fix that. What are the limits and to what extent
do we have to accept the given both as given and the given both as perhaps
perfectible and what that means?
Look, at this time a short break. Five minutes to stretch because we
want to really have the time for Gil's paper.
(Whereupon, a brief break was taken.)