January 16, 2004
1400 M Street, NW
Washington, D.C. 20005
COUNCIL MEMBERS PRESENT
Leon R. Kass, M.D., Ph.D.,
American Enterprise Institute
Rebecca S. Dresser,
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Francis Fukuyama, Ph.D.
Johns Hopkins University
Michael S. Gazzaniga, Ph.D.
P. George, D.Phil., J.D.
Ann Glendon, J.D.,
William B. Hurlbut,
William F. May, Ph.D.
Southern Methodist University
Johns Hopkins University School of Medicine
Gilbert C. Meilaender,
Janet D. Rowley, M.D.,
The University of Chicago
Michael J. Sandel, D.Phil.
SESSION 5: TOWARD A "RICHER
COUNCIL'S REPORT TO THE PRESIDENT
CHAIRMAN KASS: Good morning. We should get started.
This is the fifth session of the meeting devoted toward our
project, "Toward a Richer Bioethics," celebrating
the release of our — let's call it a report — fourth book,
Being Human: Readings from the President's Council on
This has been a relatively invisible project of the Council in
the sense that it has been the subject of no formal Council discussions,
though Council members have been consulted at all stages of the
process to make suggestions of readings. And, in fact, some of
the readings in this volume have been explicitly discussed. And
probably 10 of the 95 have appeared either in comments made in the
meetings or in previous publications.
This is a most unusual document for any government body to
produce. And I think it probably deserves some justification,
but I don't want to steal time from the discussion that we
are going to have here this morning. The justification for
it is given in the Chairman's introduction to the volume.
And although we are not anything like a congressional committee,
if members won't mind, I would like to just insert some of
those remarks into the record so they will be part of the
official record of this meeting. The people in the audience
have a copy of the text; they can read it for themselves.
I think the Council members know why we care about this subject.
Questions of bioethics very often come to touch the deepest
issues of our humanity. And the readings from the humanities
are among the best resources we have for thinking about those
things and addressing those questions.
Before turning to the panel, I simply want to acknowledge
the extraordinary work of our director of education, Rachel
Wildavsky, who collected these essays, who served as the general
editor of this volume. Rachel, we're in your debt for a really,
really beautiful project.
(Chairman Kass asked and received unanimous consent to insert into the
record the following prepared remarks, taken from his introduction
to Being Human.)
by Leon R. Kass, M.D.
Chairman, President’s Council on Bioethics
Why another thick book about bioethics? Why a bioethics reader?
Why a reader on Being Human? And why a reader on being human from
the President’s Council on Bioethics? The short answer is
this: The Council believes that readings of the sort offered here
can contribute to a richer understanding and deeper appreciation
of our humanity, necessary for facing the challenges confronting
us in a biotechnological age. The longer answer constitutes our
introduction to this volume.
We begin at the beginning: What is “bioethics,” and
why do we need it? Bioethics is a relatively young area of concern
and field of inquiry, less than forty years old in its present incarnation—though
many of the questions it leads to are in fact ancient. In the mid-1960s,
following the disclosure of several abuses here and abroad, ethical
attention first focused on the use of human subjects in medical
experimentation. Intense public discussion established the importance
of voluntary and informed consent, and institutional arrangements
were subsequently developed to protect vulnerable patients against
the potentially excessive zeal of otherwise worthy experimenters.
Around the same time, it also became clear that advances in biomedical
science and technology were raising—and would increasingly
raise—more far-reaching and profound challenges to familiar
human practices and ways of thinking, feeling, and acting.
By 1970, the effects of the so-called biological revolution were
beginning to be felt. Oral contraceptives, tranquilizers, and psychedelic
drugs were in use, as were cardiac pacemakers, respirators, and
kidney dialysis machines. In vitro fertilization of human egg by
human sperm had just been achieved and the first heart transplant
had just been performed. People were developing a new “definition
of death” that looked to brain activity rather than heartbeat
or spontaneous breathing as the definitive sign of existing life.
Scientists had discovered a “pleasure center” in the
brain, and were exploring possible uses of implanted electrodes
in this area for purposes of behavior therapy and control. Genetic
screening and pre-natal diagnosis had just arrived, and scientific
conferences were being held about coming prospects for gene therapy
and even about genetically engineered improvements in the human
race. There was great excitement about using the new knowledge and
techniques to cure disease, overcome infertility, treat mental illness,
and relieve much human suffering. Yet at the same time, people sensed
that the new possibilities for intervening into the human body and
mind would likely raise large questions, not only about safety and
efficacy but also about human freedom and dignity, human self-understanding,
and the kind of society we were bringing into being. No one had
yet heard of bioethics or bioethicists. But their time had arrived.
Actually, the word “bioethics” was coined in 1970 by
the biologist Van Rensselaer Potter—to designate a “new
ethics” to be built not on philosophical or religious foundations
but on the supposedly more solid ground of modern biology. But the
term soon came rather to denote a domain of inquiry that examines
the ethical implications of advances in biomedical science and technology
for everyday life, as well as for law, social institutions, and
public policy. Today, “bioethics” also names a specialized
academic discipline, granting degrees in major universities and
credentialing its practitioners as professional experts in the field.
Over the past thirty years, the field of bioethics has mushroomed.
It has entertained discussions and debates on moral and policy issues
connected with abortion, fetal tissue implantation, genetic screening
(and privacy and discrimination), assisted reproductive technologies,
surrogate motherhood, embryo and stem cell research, cloning, gene
therapy and genetic “enhancement,” the use of mechanical
hearts or animal organs in transplantation, the use of performance-enhancing
drugs in athletics or psychotropic drugs for modifying and controlling
behavior, living wills and “Do Not Resuscitate” orders,
assisted suicide and euthanasia, and the merits of hospice care—among
many, many others. Ongoing attention to research with human subjects
has further refined the principles and procedures needed to safeguard
subjects’ rights and well-being. Hospital-based ethics committees
have been established to deal with difficult end-of-life issues
regarding termination of treatment. Professional societies and biotechnology
companies employ ethics committees to address specific issues as
they arise—say, about whether to practice sex-selection, or
how to insure fair access to the fruits of biotechnical innovation.
Federal legislation has been enacted both to facilitate organ transplantation
and to ban the buying and selling of the organs themselves. Debates
continue regarding remedies for the inequities of heath care in
the United States or the virtual absence of health care and public
health measures in underdeveloped countries abroad. Today, bioethicists
teach at most medical schools and universities, advise governments
and corporations, and appear frequently in the media. Hardly a day
passes without some topic of bioethical significance appearing on
the front pages of the newspapers. And the President’s Council
on Bioethics is but the latest in a series of national bioethics
commissions charged with offering advice about this entire set of
developments. Bioethics business is booming, and deservedly so,
for there is much of importance at stake.
In creating this Council, President George W. Bush gave us a broad
mandate and, among other charges, a somewhat unusual responsibility:
“to conduct fundamental inquiry into the human and moral significance
of developments in biomedical and behavioral science and technology.”
We are also charged “to facilitate a greater understanding
of bioethical issues.” Yet, as the Council noted when we first
convened in January 2002, many of the deep and broad human implications
of the coming age of biotechnology are not today receiving adequate
attention. Perhaps it is because the field is so busy attending
to the novel problems that emerge almost daily. Perhaps it is because
attention to devising guidelines and regulations leaves little time
to reflect on the full range of human goods that we should be trying
to promote or protect. But it may also be that the concerns and
concepts that have come to dominate the discussions of academic
and public bioethics, for all their strengths, do not by themselves
get to the deepest reaches of our subject.
The major principles of professionalized bioethics, according to
the leading textbook in the field, are these: (1) beneficence (or
at least “non-maleficence”—in plain English: “do
no harm”), (2) respect for persons, and (3) justice. As applied
to particular cases, these principles translate mainly into concerns
to avoid bodily harm and to do bodily good, to respect patient autonomy
and to secure informed consent, and to promote equal access to health
care and to provide equal protection against biohazards. So long
as no one is hurt, no one’s will is violated, and no one is
excluded or discriminated against, there may be little to worry
about. Fitting well with our society’s devotion to health,
freedom, and equality, this outlook governs much of today’s
public bioethical discourse.
Thus, we worry much that human cloning may be unsafe, but little
about what it might mean for the relations between the generations
should children arise not from the coupling of two but from the
replication of one or should procreation come to be seen as manufacture.
We worry much about genetic privacy and genetic discrimination,
but little about acquiring godlike powers of deciding which genetic
defects disqualify one for birth or about how we will regard our
own identity should we come to be defined as largely a collection
of genes. We worry much about issues of safety or unfairness when
athletes use steroids or college students take stimulants, but little
about the way these (and other mediating) technologies might distort
the character of human activity, severing performance from effort
or pleasure from the activity that ordinarily is its foundation.
We worry much about the obstacles to living longer, but little about
the relation between trying to live longer and living well.
In a word, we are quick to notice dangers to life, threats to freedom,
and risks of discrimination or exploitation. But we are slow to
think about the need to uphold human dignity and the many ways of
doing and feeling and being in the world that make human life rich,
deep, and fulfilling. Indeed, it sometimes seems as though our views
of the meaning of our humanity have been so transformed by the technological
approach to the world that we may be in danger of forgetting what
we have to lose, humanly speaking.
To enlarge our vision and deepen our understanding, we need to focus
not only on the astonishing new technologies but also on those (in
truth, equally astonishing) aspects of “being human”
on which the technologies impinge and which they may serve or threaten.
For bioethical dilemmas, though generated by novel developments
in biomedical science and technology, are not themselves scientific
or technological matters. They are human dilemmas—individual,
familial, social, political, and spiritual—confronted by human
beings at various stages in the human lifespan, embedded in networks
of meaning and relation, and informed by varying opinions and beliefs
about better and worse, right and wrong, and how we are to live.
Often, competing human goods are at stake (for example, seeking
cures for disease versus respecting nascent life); in other cases,
the evils we seek to avoid are deeply intertwined with the goods
we ardently pursue (for example, eliminating genetic defects without
stigmatizing those who have them). Moreover, both in practice and
in our self-understanding, bioethical issues generally touch matters
close to the core of our humanity: birth and death, body and mind,
sickness and health, sex and procreation, love and family, identity
and individuality, freedom and dignity, aspiration and contentment,
the purposes of knowledge, the aim of technology, the meaning of
suffering, the quest for meaning. A richer bioethics would attend
to these matters directly and keep them central to all bioethical
inquiry and judgment. A richer bioethics would feature careful and
wisdom-seeking reflection regarding the full range of human goods
at stake in bioethical dilemmas.
In all of its work to date, the President’s Council on Bioethics
has tried to practice and foster such an approach. For the Council,
“bioethics” is not an ethics based on biology, but an
ethics in the service of bios—of a life lived humanly, a course
of life lived not merely physiologically, but also mentally, socially,
culturally, politically, and spiritually. Even as we have tackled
specific issues such as human cloning or the uses of biotechnology
that lie “beyond therapy,” we have sought to probe the
meanings of the intersections of biology and biography, where life
as lived experientially encounters the results of life studied scientifically.
We have sought as best we can to clarify, promote, and defend “being
Where might we seek help in thinking about “life lived humanly,”
about birth and death, freedom and dignity, the meaning of suffering,
or any of the other marks of a genuinely human experience? Since
the beginnings of human self-consciousness, these matters have been
the subjects of humanistic reflection and writing, capturing the
attentions of great thinkers and authors. Works of history, philosophy,
poetry, imaginative literature, and religious meditation have pondered
and commented upon—and continue to ponder and comment upon—these
matters. In the Council’s own discussions and reports, we
have on several occasions looked to these works for their insights
and instruction (roughly a dozen of the works included in this volume
have explicitly entered the conversations at our meetings or the
pages of our writings). And each of us individually, explicitly
or tacitly, relies on what we have learned throughout our lives
from texts such as these, as we grapple with the difficult bioethical
issues before us. Early recognizing the value of such readings,
we have featured many selections “From Our Bookshelf”
on the Council’s website (www.bioethics.gov). Now, “to
facilitate a greater understanding of bioethical issues,”
we have collected and organized them in this volume in the hope
that others may discover for themselves the help that is available
from wise, sensitive, and thoughtful authors, many of whom come
from other times and places. As we strive to stay human in the age
of biotechnology in ever-better and fuller ways, we must take whatever
help we can get in deepening our appreciation of “being human.”
We do not offer these readings as authoritative or as authorities.
As readers will discover, they differ too much among themselves
to constitute any single coherent teaching. Rather, we offer them
in the wisdom-seeking—rather than wisdom-delivering—spirit,
as writings that make us think, that challenge our unexamined opinions,
expand our sympathies, elevate our gaze, and illuminate important
aspects of our lives that we have insufficiently understood or appreciated.
Each reading is accompanied by a brief introduction directing readers
toward the bioethical implications of the text, not by drawing conclusions
but by asking questions. As any teacher knows, most good books do
not teach themselves. We are all frequently lazy readers, who pass
off what is puzzling or unfamiliar, and, even worse, who fail to
see the depth in what is, by contrast, familiar and congenial. Often
our prejudices get in the way. Sometimes, our inexperience blinds
us to crucial subtleties and nuances. Accordingly, we have prefaced
each reading with some observations and questions designed to make
for more active and discerning reading. These questions should be
suitable for discussion by groups reading together or for study
by individuals reading alone. In some cases, where the text seemed
more remote or where we thought it helpful, we have taken a more
didactic tone, asking the reader to come at the text with certain
questions and concerns in mind. We have done this with mixed feelings;
we do not wish to get between author and reader, nor do we wish
to imperil understanding of texts written by subtler and greater
minds because of our limited understandings and specialized concerns.
We thus encourage the readers to use the introductions if they find
them helpful, but to treat them with the proverbial grain of salt.
Readers will note, though, that in our choice of readings we have
not excluded texts that evince strong moral viewpoints or that are
rooted in particular religious faiths. We have welcomed all valuable
anthropological or moral insights, regardless of whether they are
rooted in religious faith, philosophy, or ordinary personal experience.
Respect for American pluralism does not mean excluding deeply held
religious (or non-religious) viewpoints or sensibilities. On the
contrary, with the deepest human questions on the table, we should
be eager to avail ourselves of the wisdom contained in all the great
religious, literary, and philosophical traditions.
One of the virtues of an anthology is that readers are free to pick
and choose what they wish to read, skipping around in no particular
order. Yet, as we will now indicate—and as the introductions
to each of the chapters will make even clearer—there is method
in our ordering, and we think there is additional advantage in following
the text straight through.
It remains, therefore, only to sketch the structure of this volume. The (ninety-five)
readings are divided into ten chapters; each chapter opens with
a brief introduction, setting forth the topic at hand and providing
a synoptic view of the readings that follow. The ten chapters are
in turn arranged in three sections.
The first section, “Natural Imperfection and Human Longing,”
introduces a central human question that lurks beneath the surface
of many bioethical issues: Which is the proper human attitude or
disposition in the world: molding or beholding? When and to what
extent should we strive to change and alter nature and especially
our own given nature, in an effort to improve or save it? When and
to what extent should we strive to accept and appreciate nature
and our own given nature, in an effort to know or savor it? This
section, comprising three chapters, also introduces the means we
have for acting upon these dueling impulses and longings: biomedical
science and the art of medicine, both major players in the dramas
of bioethics today.
One, “The Search for Perfection,” readings
explore the age-old human aspiration to improve our native
lot, removing our imperfections and bringing our nature closer
to our ideal. Does our flourishing depend on our ability to
better our form and function? Or does it depend, conversely,
on our ability to accept and even celebrate our natural limitations?
Two, “Scientific Aspirations,” readings from
biographies and memoirs of great scientists explore the motives
and goals of scientific activity. Both as a mode of inquiry
and as a body of knowledge, science has served both human
aspirations—beholding and molding—although its
utility as the basis of technological innovation is one of
the central features of modern science. Yet science is also
a human—and ethical—activity, the fulfillment
of personal human desires. How do scientists themselves see
the relation between theory and practice? What guides their
own scientific quest?
Three, “To Heal Sometimes, To Comfort Always,”
we turn from the pursuit of knowledge to the age-old medical
dream: by means of such knowledge, to bring healing to the
sick and wholeness to the broken, and, in the limit, to perfect
our vulnerable and mortal human bodies. Readings explore the
purposes of medicine, seen from the perspective of doctor
and patient, and examine a vocation not only to heal but also
to care and comfort.
The second section, “The Human Being and the Life Cycle,” moves
from aspirations of and for human beings to questions about human
nature itself: What is a human being? And what sort of a life have
we human beings been given to live? The four chapters comprising
this section treat various aspects of these anthropological questions,
many of them sorely neglected in much current bioethical discourse:
the meaning for our identity of our embodiment; the tension between
change and stability as we progress through the life cycle; the
place of begetting and belonging in human flourishing, as we live
with ancestors and descendants; and the meaning of mortality as
the ultimate boundary of any human life. The relevance of these
topics to contemporary bioethical arenas such as organ transplantation,
assisted reproduction and genetic screening, and research to alter
aging and the human lifespan needs only to be mentioned to be seen.
Four, “Are We Our Bodies?” readings explore
the puzzling question about the relation between our bodies
and our minds (or souls). Are we mostly one or the other?
Are we rather only the two of them together? How are our lofty
aspirations related to our “fleshiness”? How crucial
is our body to our identity and worth?
Five, “Many Stages, One Life,” readings ponder
what it means that we live in time, that we both change constantly
yet continue always as “ourselves.” Is there a
shape or meaning to our temporal journey? What sense are we
supposed to make of life’s various “stages”?
What unites the beginning of our lives with its end?
Six, “Among the Generations,” we move from
the life cycle of individuals to their connections to those
who came before and those who come after. Readings explore
the experience and significance of human procreation and renewal,
as well as our obligations to ancestors and descendants. How
important are biological ties to the work of human parenting
and perpetuation? What is the significance of the family tree?
What do the various branches owe to one another?
Seven, “Why Not Immortality?” we move from
procreation to a more radical response to our finitude: the
quest for personal immortality. The readings consider various
expressions of, and responses to, this ancient human longing.
How does this longing affect the way we spend the time of
our lives? What does it imply regarding the goodness of terrestrial
life? Is mortality only a burden or also a blessing? Does
the answer depend on the truth about an afterlife? Would our
longing for immortality be satisfied by having “more
of the same”? Do we long for an endless existence or
for a perfected one?
The third section, “Cures, Improvements, and Their Costs: Virtues for
a Richer Bioethics,” moves from the anthropological questions
to the ethical and spiritual ones, with a special eye on possible
excellences that may be enhanced or threatened in the age of biotechnology.
The three chapters in this section deal with some of the deepest
bioethical questions: the value, if any, of vulnerability and suffering;
the importance, for living well, of unmediated and direct engagement
with the world and with our fellow creatures; and the character
of human dignity. Once again, these are matters that tend to be
neglected in current bioethical discussions. Yet on reflection,
their centrality is not difficult to recognize, especially in such
matters as our use of heroic measures to save and extend life, our
increased reliance on psychotropic drugs to handle the trials and
tribulations of life, or our attempts to describe and explain human
life and human freedom solely in terms of genes, hormones, or neurotransmitters.
Eight, “Vulnerability and Suffering,” the
readings consider the venerable question of why we suffer,
and the further question of whether there is anything to be
said on suffering’s behalf. Would eliminating all suffering
be humanly desirable? Could it be that some forms of suffering
are essential to our identities and our dignity? Or is this
just a rationalizing effort, to make—quite literally—a
virtue out of necessity?
Nine, “Living Immediately,” the readings look
closely at the character of human activities when these are
engaged in at their peak. Of special interest are instances
when we can be at-work in the world wholeheartedly and immediately,
unencumbered by pain and suffering and not deflected by technological
or other “intermediaries.” How can we take advantage
of the powers technology bestows on us without hazarding distortions
of the very activities these powers are meant to serve? What
is required for genuine encounters with the world and with
other people—for what some call “real life”—and
what are the obstacles to their achievement?
Finally, in Chapter
Ten, “Human Dignity,” we turn explicitly to
the theme that has been tacitly present throughout the volume:
the dignity or worth or standing of the human creature. Though
the term, “human dignity,” has a lofty ring, its
content is quite difficult to define. Or rather, to be more
precise, many different authors and traditions define it differently,
as the readings in this chapter make abundantly clear. Yet
they are all struggling to reveal that elusive core of our
humanity, those special qualities that make us more than beasts
yet less than gods, the encouragement and defense of which
may be said, arguably, to be the highest mission of a richer
bioethics. Some readings will do so by argument, others by
presenting instances and exemplars. Taken together, they should
help us see the profoundly special character of human beings
and the special virtue to which we may rise—with and
without the help of biotechnology.
End of Chairman Kass's inserted remarks.
CHAIRMAN KASS: To celebrate the release of this volume
but also to subject our enterprise to some critical scrutiny,
we have convened a really wonderful panel this morning to
discuss with us the role of the humanities in bioethics.
We have, first of all, Professor Bruce Cole, distinguished
art historian specializing in the Renaissance, with a keen
eye for being human, who is now the eloquent Chairman of the
National Endowment for the Humanities, the country's leading
voice on the importance of the humanities for our general
We have Professor Paul Cantor from the University of Virginia,
a long and distinguished career as a teacher of literature
who almost 20 years ago, I believe, did a book on the creator
and creature on the romantic myths, including the discussion
Then we have Dr. Edmund Pellegrino, who is now Professor
emeritus of medicine and medical ethics at the Center for
Clinical Bioethics at Georgetown University School of Medicine.
I think it is fair to say that Ed Pellegrino has, for more
than 50 years, been the most visible and most eloquent exemplar
of the medical humanities in this country and a pioneer in
Welcome to all three of you. We're simply delighted that
you would come and join us on this occasion. And we look
forward to your remarks. We will go in that order after the
presentations. We will have either discussions amongst the
panelists themselves or involving all of us. Thank you.
And please, Bruce, would you like to start?
DR. COLE: Thank you, Leon.
PANEL DISCUSSION: THE ROLE
OF THE HUMANITIES IN BIOETHICS
DR. COLE: It's an honor to be here and a pleasure
to address this group on such an important occasion. You
began your discussions two years ago not with an assessment
of the latest technology, a list of medical possibilities,
or a survey of the policy together with a story.
Nathaniel Hawthorne's short story "The Birth- mark"
illustrates both the timelessness and the dangers of the pursuit
of human perfection and the revolt against limitations. More
than that, it shows how the stories, poems, philosophy, and
thought of the past have something to say about our future
dilemmas. I think it also shows the unique and thoughtful
approach of this Commission headed by my friend and colleague
I want to thank Leon for inviting me here today and for the
opportunity to speak to issues I believe are inextricably
linked with the humanities. I also want to thank Dean Clancy
and the Commission staff for their work in making this meeting
possible. And I would like to congratulate all of the members
of the White House Bioethics Commission on the release of
your book, Being Human.
The National Endowment for the Humanities has sponsored numerous
projects seeking to broaden understanding of these issues.
In the past four years alone, the NEH has spent over a million
dollars on projects to extend bioethics research, establish
endowments for bioethics study, and create fellowships and
underwrite documentary films, studies, and even textbooks.
The NEH funded the Baylor College of Medicine's work, A
History of Medical Ethics, a one- volume history of medical
ethics from antiquity to the twentieth century. It also provided
special support for the Encyclopedia of Bioethics,
the standard reference work in the field. But today we are
here to celebrate this Commission's new book.
Being Human accomplishes something important. It
sheds light on bioethics through the lens of the humanities.
To quote one insightful passage of the introduction, "We
need to focus not only on the astonishing new technologies
but also on those aspects of being human on which the technologies
impinge. For bioethical dilemmas, though generated by novel
developments in the biomedical science and technology, are
not scientific or technological matters. They are human dilemmas,
individual, familial, social, political, and spiritual, confronted
by human beings at various stages of the human life span embedded
in networks of meaning and relations and informed by varying
opinions and beliefs about better or worse, right or wrong,
and how we are to live," unquote.
Over the last several years, the argument that the realm
of bioethics is the province of the medical field and technology
industry appears to be gaining ground, not because it has
been persuasive but because it has been assumed.
The advent of new technologies has been almost universally
celebrated. And questions about where those technologies
may lead us have often been written off as irrational fears
of Luddites or practitioners of an exotic faith. Of course,
advances in human knowledge are grounds for excitement, but
such excitement only increases the need for a dispassionate
consideration of where the applications of such knowledge
A purely medical or technical response is not a complete
one. It is all too easy to disregard the categorical imperative
and assume a technological one. I think it is fair to say
that the allure of the technological imperative is particularly
strong in our time and, as a result, the dangers of dehumanization
more stark than ever.
New technologies are tools which can be used to help or harm,
edify, or demean, protect, or destroy. A knife can be used
to perform life- saving surgery or murder. New biotechnologies
have the potential to do far more than merely save or end
Cloning creates a new life in the form of a carbon copy.
Genetic advances hold out hope for designing our offspring
according to our wish and promises to redefine what it means
to be human.
The new discoveries and knowledge undergirding these technologies
hold out promise and hope of curing disease, overcoming disability,
and even extending life, but they also contain great dangers,
the commodification of people, the reduction of human life
to disposable resource, nor is this a distant danger, repellent
as it is. It requires that we take stock before taking action.
As Leon has said, there is often wisdom in repugnance.
President Bush charged this Council to "conduct fundamental
inquiry into the human and moral significance of developments
in biomedical and behavioral science and technology."
His instructions assumed that the ultimate significance of
biotechnology was broader and deeper than its utility and
that such an inquiry must include those outside the technology
industry. Without such an inquiry, we stand in danger of
ambling blithely but blindly into a brave new world. Ultimately,
this inquiry is incomplete without the humanities.
The humanities are, quite simply, the study of what it means
to be human. The legacy of our past, the ideas and principles
that motivate us, and the eternal questions that we still
ponder, the classics and archaeology show us from whence our
The study of literature and art shapes our sense of beauty.
And the knowledge of philosophy and religion gives meaning
to our sense of justice and goodness. At their core, issues
of life and death, identity and connectedness, aspiration
and limits, healing and death all pertain to what it means
to be human and, thus, are questions for the humanities.
Not only do the humanities have profound implications for
bioethics, but the reverse is true as well. Many of the new
technologies you discuss have the potential to fundamentally
redefine what it means to be human. Germ line manipulations,
genetic engineering, and other procedures would alter DNA
and human character. It is hardly an exaggeration to say
that the future of humanity has some implications for the
future of the humanities. We're all in this together.
I would like to make one last point. As many of you know,
I am an art historian by background and training. I hope
you forgive a plug for including great works of visual arts — I can't give any remarks without mentioning art; I'm sorry — in the survey of sources you consult in your studies here.
Before we had evidence of the written word, we had cave paintings.
There are millennias' worth of evidence that the instinct
and drive to make art is a human universal, transcending time,
place, culture, religion, language, and ethnicity. Many of
the great masterpieces in the history of art deal directly
with issues you grapple with here: human origins, dignity,
death, limitations, and desire for perfection.
One of the great advantages of art is that it concretizes
the abstract and gives it physical shape. It provides a new
and powerful way of looking at and learning from the wisdom
of the ages.
This Commission has a difficult task. I commend and congratulate
it for its exceptional work and readiness to draw deeply from
the humanities in delving into the perplexing dilemmas of
In a time when many are tempted or pressured to resolve bioethics
questions by reference to market pressure or interest groups,
it is essential for thoughtful citizens to consider the full
implications of new technologies and knowledge. Both the
arts and the humanities give us a way to approach these great
issues. No inquiry worth the name is complete without them.
CHAIRMAN KASS: Thank you very much.
DR. CANTOR: It is a pleasure to be here this morning.
It is especially a pleasure to celebrate the publication of
this wonderful anthology, extraordinary event. I think the
last time a government body produced an anthology of literature,
it was under the orders of the Emperor Augustus.
So I'll sum up the importance of the humanities for the study
of bioethics by saying science can tell us how to do things,
but it can't tell us whether to do things. And that's where
the humanities come in.
The humanities help us to imagine the consequences of what
we are doing with science. This anthology is very good in
raising the issue of immortality, for example. The ultimate
promise of modern science is immortality. That's why it gets
the big bucks when it comes to funding.
But literature can help us imagine what immortality might
really be like and in the case of the Swift, Jonathan Swift,
excerpt you have here, show that there might be a down side
to the seemingly wonderful prospect of living forever. And
so that I think has been the great function of literature,
the humanities in general.
I really applaud this anthology. It has an extraordinarily
wide range of selections. That's one of its best features,
I think. There are some of the obviously great and profound
authors, like Homer and Tolstoy, but I was very pleased to
see an excerpt from Gattaca, from a film, reminding
us that literature doesn't just cease with the printed word.
And that film, representative of the whole genre, really is
one of the ways that helps us do this imagining. I would
have put Blade Runner in the book if I had had a choice.
Another wonderful selection was the one from J. M. Barrie
on Peter Pan. It made me go back and reread the original
play. I hadn't realized how serious it was in its own way.
Indeed, I now think there is no better way of confronting
the problem of what it is to grow up and what the choices
are between staying an eternal child, which many of us might
like to do, and then facing responsibilities of adulthood.
So I think this anthology has a great deal to offer. The
selections were very well chosen. And I hope it gets widely
disseminated and people can draw upon it.
To pursue this question of the relation of the humanities
to bioethics, I would like to concentrate on a period that
I specialize in, the Romantic period, the early Nineteenth
Century, say a few remarks about that because, in a way, this
was the first period that confronted modern science and modern
technology. These are the first writers, around 1800, who
are dealing with the beginnings of the Industrial Revolution.
They help us raise one question about turning to the humanities,
a point that I think a lot of scientists might raise. That
is, who are these poets, who are these people, the humanities,
to say anything about science? We worry that they don't know
anything about science. And can they have anything reasonable
to say if they argue?
Moreover, there is a kind of occupational tension between
poets and scientists. I'll talk about that in a few minutes.
There is a sense in which poets in the Nineteenth Century
felt themselves being crowded out by science. And maybe if
they say warning things about the direction science is taking
us, it's out of a kind of professional envy.
Well, I think if we actually look at this period in question,
it turns out that a number of the Romantic poets and other
writers of the time actually were quite knowledgeable about
We have the standard view that the Romantics were anti- technology — and to a large extent, they were — and that they were
anti- science. But, in fact, they were the first people to
realize the imaginative possibilities of science. It's no
accident that, in effect, the first work of science fiction,
Frankenstein, which I will speak about in a minute,
grows out of this period, but even someone like Wordsworth
was impressed by science.
I am going to read you a little sonnet he wrote called "Steamboats,
Viaducts and Railways." Now, we normally think about
Wordsworth writing about daffodils, but he actually could
get pretty turned on by railways as well. "Motions and
Means, on land and sea at war with old poetic feeling, not
for this, shall ye, by Poets even, be judged amiss."
As he starts off there, he knows that these new technologies
are somehow at war with poetry, but he's not going to judge
them negatively for that reason, "Nor shall your presence,
howsoever it mar the loveliness of Nature, prove a bar to
the Mind's gaining that prophetic sense of future change,
that point of vision, whence may be discovered what in soul
ye are. In spite of all that beauty may disown in your harsh
features, Nature doth embrace her lawful offspring in Man's
art; and Time, pleased with your triumphs over his brother
Space, accepts from your bold hands the proffered crown of
hope, and smiles on you with cheer sublime."
"Sublime" was in a way the master word of the whole
Romantic generation. Again, we normally think of Wordsworth
thinking of the great mountains of the Lake District as being
sublime. But here he can look at steamboats, viaducts, and
railways and think of them as sublime.
And as the wave of the future, you see here that, in fact,
this Romantic generation was quite impressed with the new
possibilities of modern technology. I bring that up just
so that when they criticize it, we can say it wasn't simply
out of ignorance or a kind of reactionary spirit.
Percy Shelley and Lord Byron are another example of Romantic
poets who were quite knowledgeable about modern science, who
were studying contemporary geology and biology and very much
fired up and inspired by the new imaginative prospects raised
by modern science and modern technology.
Nevertheless, this generation did put up a number of red
flags of caution. The greatest example of that is Mary Shelley's
Frankenstein. I want to speak about that. I see,
you know, the volume begins with "The Birth- mark."
"The Birth- mark" would not have been possible without
Frankenstein, one of the works that inspired it.
Since you did discuss "The Birth- mark," I just
want to show you that literary critics do have something to
say I hope you noticed with the character Aminadab, spelled
backwards, his name is bad anima, bad. So I think that's
a little clue to what is going on in that work.
Anyway, I really think you should have included Frankenstein
somehow in this volume. That's my one criticism. It actually
has gone on to become in the popular imagination the great
example of a warning against the dangers of modern technology.
Most people know the story through the movie and are unaware
of how literate the book is. So I am going to read a couple
of passages from this, which really show how prophetic Mary
Shelley was in questioning some of the consequences of scientific
enterprise set loose without caution.
This is from the chapter where Victor Frankenstein is recounting
his original planning of his creature. Unfortunately, this
displays a great deal of insight into sometimes the lack of
planning in scientific procedures.
This is what Victor says, "I doubted at first whether
I should attempt the creation of a being like myself or one
of simpler organization." In other words, should he
have started with a small project or go straight for creating
human life? Here he says, "But my imagination was too
much exalted by my first success to permit me to doubt of
my ability to give life to an animal as complex and wonderful
as man. The materials at present within my command hardly
appeared adequate to so arduous an undertaking, but I doubted
not that I should ultimately succeed. I prepared myself for
a multitude of reverses. My operations might be incessantly
baffled and, at last, my work be imperfect. Yet, when I considered
the improvement which every day takes place in science and
mechanics, I was encouraged to hope my present attempts would
at least lay the foundations of future successes. Nor could
I consider the magnitude and complexity of my plan as any
argument of its impracticability. It was with these feelings
that I began the creation of a human being. As the minuteness
of the parts formed a great hindrance to my speed, I resolved,
contrary to my first intention, to make a being of a gigantic
stature; that is to say, about eight feet in height, and proportionably
Now, those last lines have the distinction of being quoted
in Mel Brooks' Young Frankenstein, but they also sum
up Mary Shelley's critique of Victor Frankenstein, "As
the minuteness of the parts formed a great hindrance to my
speed, I resolved, contrary to my first intention, to make
the being of a gigantic stature; that is to say, about eight
feet in height."
Now, here Victor does not consider the consequences for the
creature of its being eight feet in height. He's got a problem.
He can't find miniature parts. He's in a real hurry. So
he scraps the original plan and says, "Well, I'll make
it eight feet tall." In some ways, all the problems
that this poor creature has follow from this last- minute
revision of the plans.
Any time scientists tell us, "Well, don't worry about
the consequences. We've just got to get this project underway.
It's really important to do it quickly. We have to use what
we have," I think this passage from Frankenstein
should be read to them.
Moreover, it goes on to say, "Life and death appeared
to be ideal bounds, which I should first break through, and
pour a torrent of light into our dark world." That again
I think very well captures the spirit of modern science that
any limits to human endeavor are merely ideal bounds. And
the great goal is to break through them.
And then, even more tellingly, Victor says, "A new speciess
would bless me as its creator and source; many happy and excellent
natures would owe their being to me. No father could claim
the gratitude of his child so completely as I should deserve
theirs." Now, why can no other father ever claim such
gratitude? Well, every other father somehow needed the help
of a mother to produce a human being up until Victor Frankenstein's
Here I think, as Shelley brilliantly focuses in on the will
to power behind modern science, "A new speciess would
bless me as its creator; many happy and excellent natures
would owe their being to me," and then that desire to
have the complete gratitude here. It's interesting that Mary
Shelley as a woman identified this masculine aspect of Victor
Frankenstein's science that fundamentally he was turning against
natural means of reproduction in order to be able to do something
that he could get all the credit for himself.
Again, I think Frankenstein is a marvelous work for seeing
the contribution the humanities can make to our understanding
of these sorts of issues of bioethics.
Again, Mary Shelley's husband, Percy, was quite knowledgeable
in science. He almost blew up his room at Oxford with chemistry
experiments. People have said, Alfred North Whitehead I think
was the one who said, that if Shelley had gone into chemistry,
he would have been a genius, "a Newton among chemists,"
I think was his phrase.
So, again, Mary Shelley was not ignorant of science. In
fact, this work was way ahead of the science of her day.
She had studied a bit about Galvani and his battery experiments.
That was all part of the background to Victor Frankenstein.
But what she is able to do is imagine what the consequences
would be to a being who was created this way. That is the
failure she shows on the part of Victor Frankenstein. He
is thinking only as the creator here. He is thinking only
of what will redound to his own glory. That means doing things
quickly and doing them immediately and with what is at hand.
He is not thinking through what it would feel like to be
eight feet tall. Remember, this is in a world with people
who are mostly five feet tall and before the time of the NBA.
So the eight feet was not in any way going to be an advantage
to this creature.
I am going to end now with a quote from Mary Shelley's husband,
Percy Shelley, who wrote a marvelous essay called The Defense
of Poetry, which, again, I really recommend to you.
The circumstances of its origin are relevant. A man named
Thomas Love Peacock had written an essay called The Four
Ages of Poetry, in which he basically argued that science
had made poetry obsolete in the Nineteenth Century, that science
now had demythologized the world. It was fine for Homer to
write poetry when people believed in all of these Olympian
gods, but he said something like, "How can you expect
to find a water nymph in Regent's Canal today? We don't believe
these myths anymore." He basically wrote an essay that
obviously was very upsetting to early Nineteenth Century poets
because he was trying to tell them that science had put them
out of business.
Well, Shelley wrote a very eloquent and profound defense
of poetry, as he calls it, which actually is one of the best
statements on the relevance of the humanities to science because
he does try to make this point that poetry can imagine what
I will just end by a quotation from Shelley where he tries
to tell us what poetry can do for science. We are to "imagine
that which we know; we want the generous impulse to act that
which we imagine; we want the poetry of life; our calculations
have outrun conception; we have eaten more than we can digest.
The cultivation of those sciences which have enlarged the
limits of the empire of man over the external world has for
want of the poetical faculty proportionally circumscribed
those of the internal world, and man, having enslaved the
elements, remains himself a slave."
In some ways, I can think of no better characterization of
the current state of modern science, "our calculations
have outrun conception." I can think of no better warning
than that "having enslaved the elements," man now
"remains himself a slave."
DR. PELLEGRINO: Good morning. Like my fellow participants,
I am pleased to be with you, but I suffer under two particular
encumbrances. First, I am here because Richard Selzer has
been ill. And I stand, therefore, in the place of someone
I could not possibly emulate, who is himself a personification
of how literature and ethics come together in his own person
and in his eloquent writing, too.
The second impediment is that as you look around the table,
I am reminded of a story, which you probably know but I think
is apposite sufficiently here for me to repeat it. And that
is a story of the man who went to heaven at a time when in
heaven there was a requirement, as there has been for those
who occupy chairs in universities, for an inaugural speech.
An inaugural speech could be on any topic the soul would like
to address. The man from Johnstown said, "I would like
to talk about the Johnstown Flood."
St. Peter said, "Well, we are very liberal here. We
will allow you to talk about anything you want, but let me
warn you Noah will be in the audience."
As I look around this table, I see clones of bioethical Noahs,
friends of mine, sometimes colleagues, sometimes debating
friends. I am very, very much reticent to try to say much
of anything in the presence of people who know so much more
than I do about it.
My only advantage, as Leon said, was having been at this
a long time. So I will be saying something about paleoethics
and hopefully bringing it up to something somewhat more contemporary.
What I have in mind is the following. First, I would like
to make a few quick comments about how much I applaud this
effort of the Council and particularly in its latest volume.
The stories put forth there, the narratives, literature, are
extremely useful and helpful and apposite in bringing the
facts clearly to all of us with moral questions, moral problems,
moral decisions. All of them are unique and personal and
embedded existentially in the lives of individual human beings.
That is something which is just beginning to be emphasized,
although it has been known for a long time in the world of
literature. If you go back to the ending of The Iliad
and the ending of The Aeneid, you find the tremendous
moral challenge of what a victor does with the one he has
vanquished. On the one hand, in The Iliad, we have
an example of mercy, respect for tradition, and the sparing
of the enemy. And in The Aeneid, we have the opposite:
the absolute application of what the hero thinks is justice.
So let me start then on the collection of the one or two
points I want to make in the brief time allowed for me. The
collection itself illustrates beautifully, as I said, the
enfleshment of moral issues and problems.
Note, though, that at the introduction of each of these episodes,
there is a series of penetrating questions. Those penetrating
questions are questions which cannot be asked by returning
to the story. They are philosophical questions. They illustrate
beautiful what Italo Calvino said, that the point in the terrain
at which literature and philosophy — read ethics at this
point — meet is at ethics.
What I would like to do, then, is make three brief observations
on the interaction between ethics and not just literature,
but the humanities in general. I do so under the rubric of
the enrichment of bioethics, which is one of the aims, I gather,
of this particular volume and I think a worthy one.
First, a quick historical look. You couldn't avoid that
with someone at my advanced age. I will not give you anecdotes
of my personal involvement. So relax.
Second, a word about the central paradox, central ethical
paradox that must be faced and which I think the Council has
opened up. I would venture to say that if the Council can
pursue this question further and already has I think made
a great contribution, your greatest contribution probably
would be if you could advance this notion of the enrichment
of bioethics because the questions that you deal with and
we deal with are questions for the entire public.
What eventually must be faced is the enrichment of bioethics
and the question which is running through the remarks my fellow
participants have already made, what is it to be human? A
central fundamental question of philosophical anthropology
or theological anthropology, what is man, what is woman, what
is our purpose, what is our destiny? And all of the other
questions are peripheral. But for many, many reasons, we
have not been able to touch that question directly because
of the pluralistic view we have of what it is to be human.
Nonetheless, we cannot avoid it.
And so my first point, historically, is simply this. As
you look at the history of bioethics, which really did not
begin until, in my view as a bystander and not so innocent
a bystander, as a matter of fact, at the beginnings of what
current bioethics is, the development from a 2,500 year- old
tradition of a very narrow but important topic, the ethics
of the profession of medicine, began to change in the '60s,
when, believe it or not, the humanities, bringing together
ethics and human values, were put together as an enterprise
by a group of, believe it or not again, campus ministers — the record is clear on this — who were concerned about
the education of physicians wishing and hoping that they could
somehow marry the technical prowess of medicine, which was
then becoming very obvious with an understanding of what it
is to be a human being and to use these techniques within
the human existential framework. An educational ideal, therefore,
was the beginning.
This is a part of the history that bioethics has not written
about. It was only until the mid '60s that that particular
thrust, which would have been very congenial to the very points
you have been making here today, particularly since some of
the volumes that you were talking about were being used.
Ten medical schools initiated programs, as a matter of fact:
ethics, human values, and the humanities.
Out of that grew a program supported by the National Endowment
for the Humanities for a decade to stimulate the education
and in- house training of faculty members in these 3 dimensions,
which would enrich and broaden the medical ethics of 2,500
years, which was more or less a statement of norms without
justification and norms without realization of the complexities
of their application in the human situation.
It was not until 1972 when bioethics was baptized in two
places, by the way, at the University of Wisconsin, as has
been pointed out, but also at Georgetown, and baptized in
two forms: one, an interdisciplinary broad approach, which
included the humanities; and the one at Georgetown, which
emphasized strongly the philosophical approach, ethics as
a formal discipline.
You know the current development. Currently bioethics has
become so broadened that it embraces almost every discipline
in the humanities and in the humanistic end of the social
sciences spectrum, so that we range from law to psychology
to anthropology to economics, et cetera, et cetera, et cetera,
because the problems involve those issues. But the stories
that one gets from each of these approaches bring us back
to the kinds of questions which your anthology raises, how
do we from the point of view of what it is to be human answer
and respond to those questions?
Bioethics, therefore, has flourished. It has grown. And
in its growing, paradoxically it has moved away from its central
issue or the one that you have pointed out repeatedly, what
is man, what are humans for, and can ethics be, again, as
a phrase from your introduction says, can ethics be in the
service of bios?
My second question, then, is, given that the move away from
normative questions, from questions of a foundation — and
it's popular, as you know, today to resist foundations in
philosophy. To move away from foundations deprives us of
some groundwork to which to return so that the questions you
have asked here, those acute questions, will have some basis
from which to work.
Now, the paradox is my second point. The paradox, of course,
is that we have no agreement on what it is to be human. And,
of course, all of the things we have been talking about contribute
to that dialogue, but we need to return to the tackling of
that question. It is the most difficult question in a democratic,
pluralistic society. Yet, it cannot be avoided.
When one avoids it, bioethics becomes a matter of procedure,
an abandonment of the search for the right and the good.
It becomes a matter of dialogue, a matter of whatever it is
we can agree upon is the right answer to whatever decision
we have facing us.
And that spirit runs through much of the bioethics literature
today when it comes to the application to particular problems.
That, of course, can only be chaos unless one is willing to
accept that the true and the good can be arrived at by plebiscite,
by agreement, by compromise, by contract.
Talk about what it is to be human raises another paradox.
And this is the second one. I'm coming close to my end.
And that is, which of the very ideas and images which emerge
from your anthology should one select? Does one select all
of them to go in all directions at once? Does one select
an idea or an image?
An idea, if I may be permitted — and I ask your forgiveness — an idea in my view to use a more ancient kind of definition
is an intellectual representation of the essence of a thing,
what is it and why is it in a general and universal sense.
An image is a particularized existentially described, multiply
examined, concrete human being. Socrates is an image. Jesus
is an image in many ways.
Do we go the image route? And I think here is where the
humanities help us enormously by giving us images. But then
which image do we follow? As I pointed out, does one go The
Iliad route or does one go The Aeneid route and
the most important question, let's say, of almost capital
punishment, justice, or do we try to discern what it is about
us as human beings that makes us different? That question
we have run away from since the Enlightenment. There are
people around this table who can say much more about that.
And I will say it further. My purpose here is simply to
raise the questions from the point of view of a long involvement
in where we are and the great importance of carrying forward
this notion of bringing together the humanities and the philosophy.
The last point is what can we do about it. Everyone will
talk about interdisciplinary programs, et cetera, et cetera,
et cetera. Yes, ethics is an interdisciplinary activity,
but it has its particular contribution to make, the orderly,
formal, systematic examination, in the light of the concrete
existential situation, those two in dialogue with each other.
And I presume your volume does that, raising the questions,
but does not go further from the resolution, not necessarily
resolution but the fleshing out of those questions in a more
advanced and formal way.
I think if we are to resolve satisfactorily the issues with
which you are wrestling — I was here yesterday as we heard
about whether one should decide about one's granddaughter,
should she be given ballet lessons or ice skating lessons,
so on, which revealed to me a certain lack of understanding
of this very question you are looking at. Whether she, the
granddaughter, has a PET scan which indicates that she would
be a wonderful snowboarder is inconsequential. Is this what
she wants? Is this how her life will develop given its particularities?
And here's where the humanities come in.
And then should one admit into the picture what the PET scan
shows about her and the way her brain lights up when you talk
about skating, as compared to running an automobile around
a track at NASCAR?
So I want to end, therefore, by saying we need to — and
you have heard this over and over again. Having been a university
president and so on, I am rather skeptical about top- down
organizations that have interdisciplinary programs. They
don't work or if they do, they come up with rather mundane
answers to questions. I do think we need to stimulate discussion
among and across faculty members.
This causes me to end my comments with a little anecdote
of the first time I met Richard Selzer. We were both faculty
members at Yale. I had the temerity to organize a cross-
campus colloquium with people from the humanities and those
few in medicine who were interested in that engagement. Richard
was a member of that group.
On those occasions, we were always enlightened by his grasp
of the existential and, on the other hand, by a philosopher
like Maurice Nathanson asking the questions you're asking
in the first part at each of these selections you have chosen.
Is it conceivable that somehow the faculty colloquia could
be one starting point for this, which might spread to students,
as it did in our particular instance, and actually end up
in jointly tought courses.
This won't do it all. The final comment I have to make is
that no democracy can survive without a sufficient aliquot
of its members instructed and able and capable of critical
thinking on the questions that the liberal arts always emphasized,
the questions of what is the right, what is the good, what
is the true, and what is the beautiful.
These are not to be decided by leaders, by congresses, by
democracies, or by anyone else. They are the result of an
educated populace entering into the dialogue and dialectic,
a combination, therefore, of philosophy as well as ethics.
CHAIRMAN KASS: Chairman Cole has to leave now. Bruce,
thank you very much for being with us this morning.
CHAIRMAN KASS: Paul, do you want to comment in response
before we simply throw it open?
DR. CANTOR: No, not really. I mean, I just —
CHAIRMAN KASS: You're content?
DR. CANTOR: Yes.
CHAIRMAN KASS: The floor is open for discussion.
DR. MAY: I will just try to compete against the rally
CHAIRMAN KASS: Let me say a word about that. You
may be wondering what is going on there.
PROF. SANDEL: They are cheering the report we
CHAIRMAN KASS: You are very close. It is the staff
retreat for the Washington Post, staff retreat. Let the record
DR. MAY: I take it what this book does is attempt
to ratify what is already going on, which is an attempt to
enlarge the canon. So much of bioethics in the 30 years that
I have been involved in it has attempted to draw on a limited
canon. And wonderful things were accomplished: Aristotle,
Kant, Mill, Nozick, and Rawls. And it's been really quite
impressive what ethicists have done pushing the discussion
at issues of autonomy and so forth.
To include this rich range of literature that this volume
does suggests that bioethics needs to enrich what goes on
by working against at least two sources of abstraction in
a society like ours. One of the abstractions is science.
The other is the abstractions of politics.
Again, science accomplishes a great deal through the generalizations
that it achieves, but the very procedure of acquiring knowledge
in science requires so often the elimination of variables
as one gets at something undistracted by its embeddedness
in other things.
The poet Yeats once complained about the abstraction of H2O
by saying, "I would like a little seaweed in my definition
of water." That trafficking in images and metaphors
and so forth, that is, the business the artist does, it insists
that we are not simply in need of universals but sensitivity
to universes, Michelangelo's Pietà, Antigone,
and so forth.
A particular issue, no, not simply a particular issue, but
an imbedded universe. And, after all, in a clinical setting,
physicians deal not simply with the abstraction of diabetes
or prostate cancer, but they deal with this embedded in the
human being, seaweed and all. And so we really do need the
work of the artist in carrying forward the work of those who
wield this enormous power which science has helped to generate.
On the other hand, there is the problem of the abstraction
of politics. And there are tragic limitations to politics.
I do not want to dismiss its extraordinary importance. It
is a way of organizing people around ideas and ideals, which
in certain ways extant political orders may have been insensitive
And so political causes arise in order to retrieve ranges
of human experience and human suffering and human deficit
that you need the society organized in such a way to attend
to. But at the same time, there is a price to pay. Politicians
perforce organize us around ideals, but eventually the idea
of justice and so forth sloganizes.
And in the course of mobilizing people for action, which
is so important, there is an abstraction from the full range
of human experience. There is an impoverishment of language
that goes on which eventually yields an impoverishment of
And so what the artist does — and this book is simply full
of people who come out of especially the verbal arts — is
attempt to retrieve language from its constant perishing.
And in doing that, they're retrieving ranges of human experience
that are out there in the culture at large but that have not
yet been fully articulated and honored in the course of its
And so when the artist freshens language and freshens insight
and articulates experience, it helps to compensate for the
tragic limitation of politics and retrieve community from
its constant perishing.
So I salute this accomplishment on the part of those in staff
who have worked at it.
CHAIRMAN KASS: Thank you very much, Bill.
Let me raise a question for you, Ed. It's prompted by your
remarks. While embracing the contribution of imaginative
literature to our deliberations for their ability to give
us the concrete particulars, the enfleshments of various ideas
in their particularity, to give us certain kinds of powerful
images that are sometimes more vivid and compelling than abstract
argument, you, nevertheless, I think — and I think it is
more evident in the paper that you gave us as background for
the talk — that you finally think that the court of last
resort is philosophy or philosophy/theology but that finally
the quest for the universals and the ideas has to take primacy.
Second, a second complaint about — and this complaint could
be registered not just about the imaging character of literature
but could even be addressed to the history of philosophy as
a whole, the belief that there must be a singular truth, but
we have multiple opinions about what it is. I wonder how
you would respond to a kind of double- barreled, not such
a critique but to an answer.
First, sometimes the idea and some kind of universal is absolutely
best grasped through a particular in which you see through
a particularly vivid image something that you couldn't possibly
get in an argument but is, nevertheless, the case.
I am not sure that you could make an argument, you could
make an argument that would capture the truth in the meeting
of Achilles and Priam in Book XXIV. You read it. You see
it. You feel it. And if you don't see it, there's something
the matter with you. No amount of argument is going to enable
somebody to see the humanity of that moment where Priam embraces
the killer of his son and both men weep.
So I am wondering whether you don't sell short the capacity
of images to yield intuitions about truths that discursive
speech can't produce for us. That would be one point.
And then while I am not unfriendly to the quest for the answers
to the great questions, we engage in it. It seems to me if
the history of philosophy has taught us anything, it is geniuses
don't agree. And it may very well be that it is sufficient
unto the day to keep the questions alive and keep the most
powerful alternatives in the conversation because the ultimate
truth might, in fact, paradoxically embrace their differences
and not find out which in the end is going to be successful.
So this is an argument that would say the presence of multiplicity
of viewpoints — sure, we have to act. And there comes a
time where you have to say, "This way" or "That."
But the complexity that people face when they face hard choices
may very well be a reflection of the rather complicated truth
of the matter and of these longstanding opponents.
Somebody who is interested in the kind of univocal truth
would say with, say, Descartes, "I looked at the history
of philosophy. There isn't anything on which the great philosophers
agree. They must have been asking the wrong questions. We're
going to start over someplace else; whereas, it seems to me
a wiser person would say when they read Lucretius, "He's
got something here" and when they read Aristotle, "He's
got something here" and one can hold these things in
mind and maybe even have a richer view of what the truth of
the matter is.
So these are two different ways to lean against I think what
I heard you say or what I thought was implied. And I wondered
if you could come back on that.
DR. PELLEGRINO: Well, there is a lot to come back
on, Leon, but I will just take one or two points. First,
I in no way take exception with your point that when we actually
make decisions, we may be making it very often intuitively
without going through any rigorous analysis.
And that's why I think it's so important that there be this
dialogue, the ecumenical model that I put forth on the paper
that I gave you but I did not talk about here. And that does
not give priority to one or the other but assigns to each
its particular task.
What I am propounding here, I suppose, is the Medieval notion
of the formal object or the material object of a study. And
I see the differences between literature and what I called
in the paper the sciences and the studies of particularity,
being valid on their own, and the sciences of the generality
of the universal or the abstract, having theirs to contribute.
I, therefore, applaud the difference. My only concern with
bioethics is that I see one facet of this dynamic equation
being pushed out and people using psychological arguments,
using images, stories, characters.
And I come back to my question, which of the images do you
follow? Do you follow Dostoevsky? Do you follow Nietzsche?
Do you follow any of these figures in literature? They're
all interesting. They all represent aspects of the human
condition and, therefore, are extremely useful.
I happen to be an inveterate reader. So I am continually
torn by these images. But one needs to have some apparatus
to step back. I am not suggesting that having the apparatus
means that everyone will come up with the same answer. What
I really am saying is I want to reserve the critical faculty
when looking at something which is emotionally moving.
I am firmly convinced that if I want to teach something about
compassion, let us say, to medical students — and, by the
way, I am still teaching medical students and still seeing
patients — when I want to get that across, I don't do it,
I can't do it by a speech. I do it through the agency of
a creative writer who can evoke in a young person who has
never experienced death, sorrow, pain, suffering, can evoke
that experience. And then I can begin to work with that to
say, "Well, now, let's step back and look at that experience."
So I do not see it as a mutually exclusive choice in any
way. Merely the concern I have is the push, strong push,
when I hear about narrative ethics. It's important.
But whose narrative do you believe? How do you know the
story is a good story and is a right story? That's the question
I am raising basically. And I am sure this Council is aware
of that. I am belaboring the obvious, but it seems to me
that it is a very important matter as you look at and make
statements, as you will, undoubtedly, probably in the future,
about what enrichment of bioethics entails and requires.
On Bill May's point of politics, Bill, again, I see the realities
of politics in the decisions and so on, but I do think we
need some order of priorities. And politics, it seems to
me, does not determine what is right or good unless you follow
that particular theory of right and wrong. There is, whether
we like it or not, a theory of morals behind every one of
those acceptances or images that we take to our own.
I am reminded of Alan Donagon's preface to his Theory
of Morality, in which he talks about precisely something
like this, Bill, his engagement with the social issue, the
political issue, deep personal engagement, his reading of
George Orwell, the entrance of literature into the picture,
and then his saying to himself, "Now, wait a minute.
How do I decide for myself what is the probity of truth of
Orwell's position in 1984? How do I critique it?"
And so he became a philosopher and produced a wonderful Theory
It doesn't mean everybody should go that way. The point
is here is literature stimulating the philosophical question.
Therefore, I see it, having been trained in chemistry and
physical chemistry, being in my research bag — the idea
of the dynamic equilibrium, in which both sides of the equation
are in constant reaction, one with the other, Bill, is the
metaphor that I would use.
CHAIRMAN KASS: Paul, could I draw you in on this?
Does the literature have something to say in response to this
exchange or do you have something?
DR. CANTOR: Well, I basically agree with Mr. Pellegrino
that what it does is make these choices, these issues more
concrete for us. And that's why I was using Victor Frankenstein
as a perfect example of a scientist who ignored the concrete.
I am just so much in agreement that there is not much to contribute.
CHAIRMAN KASS: I have Gil and then Michael Sandel.
PROF. MEILAENDER: First, maybe we could come up with
some readings about how contemplative prayer is the essence
of a retreat.
And we could put those forward for reflection by anyone
who might be interested.
Apart from that, I wanted to comment on the two issues that
you had raised, Leon, because in a sense, insofar as you and
Ed are tilting in slightly different directions, I want to
go with you on the first one and Ed on the second one. I
do think it's true that, at least sometimes, it may be possible
that a piece of literature, for instance, actually gives us
a kind of insight that discursive reason actually cannot.
So you read or see Oedipus, and there is a sense in which
you see free will and fate, or determinism reconciled. You
sort of see it and taste it in a way that probably no theory
has ever managed to work out satisfactorily, actually.
I do think that there is something to that. I don't know
how often that is true, but I think sometimes, at least, there
is a kind of insight there that is just not available through
simple discursive reason. So I am with you there.
On the second point, though, I do think that keeping the
questions alive, though a very important undertaking, — I don't dispute its significance — is not sufficient, not
sufficient for this body, not sufficient for anybody in his
or her life. We need something more than that.
I think that it is a mistake for us to suppose that the model
for living is the academy, where we really do just keep the
conversation going sort of, but there is a reason you are
an undergraduate for a certain number of years. There's more
to life than just that.
And there are moments when one really does have to decide,
and your decision may be enriched in countless ways by the
questions having been kept alive and kept alive in sort of
fruitfully complex ways. But that doesn't alter the fact
that you can't just find yourself in the midst of a series
of questions, but you, indeed, must act and decide.
CHAIRMAN KASS: Michael and Frank.
PROF. SANDEL: My question is for Professor Cantor,
though I want to say first that I am sure we all appreciate
your situating our work in the sweep of history from Emperor
Augustine to Emperor Leon.
My question is about the Wordsworth passage that you read
having to do with the relation between science and nature.
It was striking to find a Romantic poet affirming the link,
rather than insisting on the opposition between them.
Often in bioethics arguments, people cast science and argue
against a scientific intervention on the grounds that it is
unnatural, whether it is flying to Mars or embarking on asexual
human reproduction; whereas, other people reply, "Well,
science is natural in the sense that it is an expression of
human nature. So it can't be cast as unnatural, whatever
else might be wrong with it."
The passage from Wordsworth included a striking phrase, the
one that you read, where he described science as "the
lawful offspring" of nature. Is Wordsworth telling us
there that, whatever the pros and cons of a particular scientific
pursuit, that no scientific pursuit can be condemned simply
as being unnatural?
DR. CANTOR: I don't know that he ever worked out
his thoughts sufficiently on that, but it is interesting that
he does see it as part, an integrated part, of the human enterprise.
Shakespeare does something very similar in The Winter's
Tale when some characters complain about grafting, that
the wrong bud has come out of the vine because grafting has
taken place and it is unnatural.
Shakespeare's characters say something like "Art uses
no means, but nature doth make those means," again that
sense that art and nature are not radically opposed, that
we are human beings and part of our nature is to create art
and to pursue science. And it is true.
Even in Wordsworth's famous Preface to Lyrical Ballads,
he talks about the imaginative possibilities of science and
predicts that someday there will be poets drawing their images
from chemistry the way they have hitherto been drawing them
from what we think of as the natural world, the world of trees
and mountains and so on.
I brought up that one sonnet because it does fill out our
picture of Wordsworth. I mean, this is the same man who Ellsworth
says, "We murder to dissect," a much more famous
line from Wordsworth which shows a kind of kind of fear of
science, particularly medical science, and where it draws
its knowledge from.
I hesitate to put too many words into Wordsworth's mouth,
but I think the example I cited from Shakespeare and this
one sonnet show that there have been moments when even the
most romantic of poets have tried to see the continuity between
science and other human activities.
Now, I think the point that Wordsworth would make — and
he does gesture towards it in this Preface to Lyrical Ballads — is that for us to see this connection, science needs to
be integrated into broader human activities. That's, indeed,
the role that Shelley argues in his Defense of Poetry
for the poet that science is potentially in harmony with poetry,
but the two can diverge.
I do think that this romantic generation believed that there
could be an unnatural direction to science. Surely, that's
the thrust of Frankenstein.
So I was just trying to correct what I think is a one- sided
misperception, even of Romantic poetry, but it is really right
to focus on that one line, which is so counter to what we
normally think of the Romantics as doing.
CHAIRMAN KASS: Ed Pellegrino and then Frank.
DR. PELLEGRINO: I just wanted to add that I didn't
mean to shortchange science in this dialogue. For want of
time, I concentrated on what I thought was to be the major
focus of the anthology.
Again, I think just Colvino's thoughts happened to flip into
my mind. He pointed out on his dialogue between literature
and philosophy that it was no longer a double- bed marriage.
It was a menage- a- trois. And science was the trois.
Now, Bill would suggest it would be a- quatre, but I'm not
sure that the bed is big enough for all of them. So I would
put science, philosophy, ethics, and literature into a dialogue
or trialogue with each other. And I think that is essential
today. So I don't want to lose that point at all.
I would see science, again, as among those disciplines of
the particularity, science per se not being able to establish
what we ought to do.
CHAIRMAN KASS: By the way, people should know that
there is a section of the reader called "Scientific Aspirations"
in which we have accounts, in four cases I think first- person
accounts, of the scientific aspiration as told by the practitioners
and a fourth remarkable account of the life of Archimedes
from Plutarch. They don't all say the same thing, and even
the modern ones don't say the same thing. And they don't
exactly say what, Paul, you have characterized to be the intrinsic
aspiration of the activity.
Science's account of its own self- understanding is not excluded
from the humanistic account because science is one of the
human activities par excellence. So I think we have tried
to make a place for that here.
PROF. FUKUYAMA: I am disappointed for the way
this has gone so far because Paul Cantor, if he is known for
anything, is not known for his high- minded discourse on Wordsworth
but his extremely acute observations on popular culture and
what they tell us about the way we see ourselves. He has
written on The Simpsons and Star Trek. His
most recent book was on Gilligan's Island.
So I don't have a question so much as a Cantor- like observation
about one of the popular culture points of reference that
you mentioned, which I think is actually quite relevant to
the discussion that we had on neuroscience yesterday, which
is the movie Blade Runner. Maybe you can react to
Those of you who have seen the Ridley Scott movie, it is
a brilliant movie. It's based on a book by Phillip K. Dick
called Do Androids Dream of Electric Sheep?
Now, those of you who have seen the movie, it's about these
replicants who are androids that are brought back from an
off- world colony. The whole theme of the movie is that they
actually develop human emotions. They are machines, but they
develop human emotions.
There is a lot of religious symbolism as the end. It turns
out that they suffer and they feel empathy and pain. In fact,
there is an image at the end of the movie where there is a
nail being driven through the hand of the chief replicant
as he is being destroyed. He kills his creator in a Frankenstein-
What is interesting about that movie is that it is completely
different from the underlying book, which made almost the
exact opposite point. If you read the original Phillip K.
Dick, he was kind of a hack writer who wrote desperately to
keep alive. His writing, he is not a great stylist, but his
imagined android was not one that had developed human characteristics
but one that was missing empathy, was missing a key human
Actually, the replicants in that story try to undermine religion.
There is a religion called Mercerism that is based on the
feeling of empathy. And the replicants actually expose Mercer
as a fraud and disabuse people of the need for religion and
It does seem to me that it points out a couple of things,
that literature is actually extremely good for enabling us
to picture both what it means to be human but also in a sense
what it means to be inhuman.
So maybe, Rachel, now that you have completed this book,
you can work on one called Being Nonhuman because in
a sense, it might better articulate what some of the fears
about the future are.
It also does seem to me the change between the Phillip K.
Dick version and the Ridley Scott version in a way reflects
the change in the broader culture, this greater confidence
that our materialistic understanding of what it means to be
a human being has somehow displaced an earlier, more religiously
based one, which said that there is something in a certain
sense unduplicatable through any mechanistic device that would
actually truly replicate what it means to be a human being.
So I wonder if you might say something about that.
DR. CANTOR: First of all, I would suggest the next
volume would be called Being Inhuman, pursue that line.
I was trying to justify Leon Kass' choice of me by largely
avoiding popular culture this morning, but I did praise the
volume for including Gattaca and actually mentioned
Blade Runner at that point. Indeed, I do think it
is relevant that the kind of inquiries represented by most
of the selections in this volume are being continued in movies,
in television, and, in fact, our popular culture is coming
to grips with the very issue that is being raised here. I
would, in fact, put in a plug for that.
Half of my book Gilligan Unbound deals with The
X- Files. And nothing in our day has confronted more
directly the very issues that you are talking about in this
volume, the very same issues and what it is the human, with
these aliens trying to imitate humans, the alien bounty hunter
who can take the form of a human but doesn't have human emotions.
I think it is actually fascinating that one of the central
motifs of our popular culture ever since Blade Runner
has been the question of how you can distinguish human beings
from various forms of androids.
Some of what is in the original Dick story does survive in
the movie in that these replicants look like human beings.
They give them psychological tests to try to figure out if
they are human beings or not. And one of the things they
are testing for is whether the being has empathy or not.
The entire Terminator series, I, II, and III, has
raised this issue, especially the very strange Terminator
II, where the Arnold Schwarzenegger character turned out
to be a better dad than the real live human being dad that
the Edward Furlong character had, and the very strange sense
that, again, this machine that had to learn emotion and when
Arnold generates a tear there at the end, we all know he is
a very good actor.
DR. CANTOR: So I have been fascinated by the — he's playing a governor now, but —
PROF. GEORGE: Will he be better than the real
live human being governor?
DR. CANTOR: Who knows? It really struck me how much
our popular culture has tried to come to terms with specifically
this issue. As we increasingly enter an electronic and cybernetic,
cybernautic age, we really have had an enormous series of
images in movies and television that raise precisely this
issue, what is the dividing line between a human being and
a machine, when do computers develop consciousness. That's
been a tremendous theme going back to the Kubrick movie 2001.
It came up in a number of X- Files episodes.
So, in fact, I think there is quite a continuity between
what we think of as high culture and our popular culture.
Again, that is why I praise the anthology for including something
from Peter Pan and something from Gattaca.
CHAIRMAN KASS: Dan Foster.
DR. FOSTER: There is a huge movement to try to get
some sort of marriage that's oftentimes used between science
and religion, for example, or in the case here we're talking
about some dialogue or interactions between ethics and philosophy
and serious questions about what it means to be human.
There was a little book that Stephen Jay Gould wrote that
I haven't found very many people read, but I read it and I
thought it was pretty interesting. It's called Rocks of
Ages. He wanted to address what he called the incorrectness
of trying to marry these two disciplines, science and religion.
In several cute ways, he says science is about the ages of
rocks and religion is about the rock of ages. He coins a
term which he calls "NOMAs, non- overlapping magisteria."
He took the term "magisterium" from the Roman Catholic
Church, which decides what questions you can ask and what
answers you can give.
His point is that the magisteria do not really overlap.
They ask different questions. Science is interested in how
the world began. Religion is interested in who may have made
it. Science is interested in how do human beings come to
be. And religion, as has already been said, asks "What
does it mean to be human?" He says these are not overlapping
questions. I think that is something that we need to try
to keep straight.
The disciplines are different. And the focus is different.
In one sense, particularly on the scientific side, there is
not much interest in the issues that we are talking about
Somebody asked me last night — I can't remember — do
scientists in general, particularly the great scientists,
have a sense of the solemnity of human life?
I would say in multiple conversations that I have had, that
that rarely surfaces. The sort of questions that we address
here may surface in terms of personal disaster or risk. If
somebody gets sick or they're dying or something like that,
they will ask sort of universal questions, but I think that
it is a hard sell to try to say what occupies people in literature
and philosophy to get the scientists to think about that in
a serious way. They're too much interested in the science
itself and probably rightfully should be, just as the writers
and so forth are fundamentally interested in what they write.
Now, there is a difference. There is an imbalance here because
my observations are that the people who are in the arts and
philosophy and literature, almost everything that happens
in science can do so enthusiastically, particularly if it
looks like it might relieve suffering or save lives, so that
the flow of information is essentially unilateral or close
Everything in science gets written up in the newspapers every
week before you even get the journals to read. So this flow,
every one of the people sitting here from the other — I'm
not saying the "other side," but I mean in this
dialogue — will read and be interested in what science is
But I can tell you that the scientists in general are not
only — this is a very big danger, and I've only talked to
a few scientists. So I don't want to generalize, but I think
it is true that the scientists are not only particularly not
interested in what something like the Council is doing, but
they are fairly hostile toward it because they see it limiting
So all I am trying to say is that it would be great if we
could reverse some of the flow backwards, but I myself think
that is relatively unlikely and that we are fooling ourselves
and what we ought to try to do is to bring up these most serious
of issues and say, "These are things that you ought to
think about. And some of the things that you are doing, we
are doing in science, are wrong or should not be done"
and get the attention there.
So I am very sympathetic to the late Gould's view that we
need to be sensitive to the non- overlapping nature of the
magisteria of these two very great things that occupy all
CHAIRMAN KASS: Ed Pellegrino, do you want to respond?
DR. PELLEGRINO: I very much agree with the reality
of the ordinary, general scientist's response to these kinds
of questions, having spent 25 years in the laboratory myself,
having experienced that and felt it myself from time to time.
However, I think, as you know, from time to time, there is
an upsurge of interest within some scientists. The Asilomar
Conference, for example, is an example of a perception of
the fact that some things ought not to be done, even though
there may be very good "scientific" reasons for
doing so. We have scientists who are concerned about atomic
energy and atomic bombs.
So there are signs of hope among scientists that they will
look at some of these questions as very pertinent to their
own way of behaving. I understand the scientists' concern.
And I very much believe in the difference in the approach
and the methodology and the evidence, but I think it's the
fusion between these three ways of looking at the world that
is essential for the kinds of problems you are facing. I
would hope that, I believe, and I am seeing that more and
more scientists are interested in these questions, quite honestly.
DR. FOSTER: As I have said, I don't want to generalize.
I happen personally to be one person who is interested in
both magisteria. I think that most people I talk to at the
very tiptop of science, like we've got four Nobel guys at
our school and so forth and so on —
DR. PELLEGRINO: I would agree.
DR. FOSTER: So they just are not as interested.
There are exceptions, and those are wonderful exceptions.
But I'm just trying to talk about the general reality here
that I think that we need to take cognizance of.
DR. PELLEGRINO: I think you are absolutely right,
and that's true among medical students as well. I would like
to say that they have been nurtured on their mother's milk
of logical positivism so that it is very hard to disengage
them from that particular addiction to something a little
CHAIRMAN KASS: Last comment from Michael Gazzaniga.
Then we will break.
DR. GAZZANIGA: I would just be curious to know, if
we took Yale as an example, what percent of your professors
in the liberal arts go to work wondering about right, good,
true, and beautiful as their goal for their week's work.
DR. PELLEGRINO: I am sorry. I am suffering from
a little bit of dysfunction of the auditory apparatus. If
you could say it a little louder, I would appreciate it.
DR. GAZZANIGA: I'm sorry. I'm sorry. You had mentioned
that traditionasl liberal arts goals included seeking right,
good, true, and beautiful. And I was just being a little
bit playful here. What percent of the Yale liberal arts faculty
goes to work and has that on their mind as their week's endeavor?
DR. PELLEGRINO: I have no illusions that we can arrive
at a full perception of these concepts. In the concepts of idea
and image as represented in literature and philosophy, we are wrestling
with the question — what is it to be human? This is a question
the Council has properly and repeatedly raised. What is common to
both literature and philosophy when each engages this question?
We can approach the answer only asymptotically, but in doing so
perhaps we can bring image and idea closer together. This we must
do if we are to have a common notion of human existence against
which to judge whether any particular biotechnological advance is
a good for humans, as humans.
CHAIRMAN KASS: Thank you, Paul Cantor. Thank you,
Ed Pellegrino. Thanks to the Council.
We have a 15- minute break. We will reconvene at 10:20.
(Whereupon, the foregoing matter went off the record
at 10:04 a.m. and went back on the record at 10:25 a.m.)
SESSION 6: DISCUSSION OF THE
COUNCIL'S FUTURE WORK
Working Paper, "The Council's Second Term: Agenda Options
CHAIRMAN KASS: Could we reconvene for what I think
is going to be a very interesting and important discussion
concerning the Council's future?
You have a staff- prepared working paper called "The
Council's Second Term: Agenda Options," which reviews
the points of departure, reviews our major projects, offers
a few generalizations about what we have done, and then sets
forth some preliminary questions about what we might do next,
and also then lists a series of possible topics.
These possible topics have been suggested by one or another,
sometimes more than one Council member or it has come up in
previous discussion. Rather than my simply rehearsing them,
you have them. You have looked at them. There are ten possible
topics described in varying degrees of detail.
I would say two things. We are not going to decide the question
of the future agenda in a conversation of an hour and a half.
In fact, there are a couple of people who have planes to catch
and may not make the full time. So we will regard this as
a preliminary round. And what will follow this is the staff
and I digesting this conversation. We will supply additional
materials for your reflection and response.
We have been slavishly productive for the first term. When
the next report comes out, God willing, in April, that will
be five books in a little over two years. No one has asked
us now to do anything else. We are somewhat in the clear.
We've got a slightly easier meeting schedule.
I think we should be free to think not only about topics
but also about different forms of product. It's not clear
that everything that we do has to be the report written by
members, by the Council. We could put together collections
of essays and papers.
And in the first instance, I think we should try to educate
ourselves about what some of these issues are so that, even
if it takes us a couple of meetings to work out the full agenda,
we do it as we have done before: invite some people in, have
some discussions amongst ourselves, land on a topic that is
So while the stakes are in a way high, I don't feel the sense
of urgency. And I think we should have a wide- ranging and
I have my own slight leanings one way or the other, but they're
not strong enough even to voice them in the conversation at
this point. So I am really mostly interested to see where
people are in their own thinking and whether there is anything
here in the document that strikes any of you as something
that might be worthwhile our exploring.
We could also invite some postmortem on the toe in the water
we got yesterday in neuroscience and neuropsychiatry because
it is one of the areas of interest and an area in which we
have also some special competence on the Council.
Any place you would like to go is fine with me. Paul McHugh.
DR. McHUGH: Yes. Leon, I would like to pick up on
what you said in your last remarks and say that yesterday's
meeting with the neuropsychologists and neuroscientists was
very interesting and raised for all of us the place of neuroscience
in relationship to our understanding of humankind.
As you heard from my slightly intemperate remarks yesterday,
I, of course, believe that the issues here to be discussed
ultimately relate to the issue of consciousness itself. Consciousness,
which brings freedom to nature, is a product of the body but
is also something interactive with the body and a matter of
phenotype that has had its role presumably in natural selection
The issues that came up yesterday as to the predictability
from the brain ultimately depend upon our understanding about
consciousness itself. So I would like to suggest that we
think in terms of some devotion of some of our time to consciousness:
Its bi-directional linkages with the body. And its evolution
through natural selection and, thus, the implications of human
We have, of course, on our board, as you said, perhaps our
country's most distinguished student of consciousness and
it's bi-directional linkages with the brain in Mike Gazzaniga.
Mike has not only done the most interesting basic work of
how consciousness and the brain interrelate but has done this
both for the scientific community and also for the public
at large. There are other people who could speak in terms
of the issue of consciousness, people like John Searle and
in evolutionary terms Daniel Dennett. Then a person whom
I think also speaks coherently about the Darwinian issues
in relationship to consciousness and its problems is Stephen
At any rate, the issue that we have to understand as a Council
and make clear to the American public is that evolution does
work on phenotype. It doesn't work on genotype.
And clearly since Jan Smuts, we have talked in holistic terms
about how the organism interacts in evolutionary terms and
consciousness. Particularly its ultimate evolution in human
consciousness is an example of the power of this process and
has tremendous meaning for our understanding of not only what
is man but who am I and that sort.
So I would recommend that we should follow up our discussions
here yesterday about what may well be the overvalued concepts
on certain kinds of brain imaging to see the place of consciousness,
which we cannot explain from the brain yet, as I said yesterday,
and, yet, has a crucial place in our understanding of ourselves
and of nature.
CHAIRMAN KASS: Rather than simply go on a laundry
list of different items, maybe I should invite people to respond
to Paul's suggestion or things in the related area. And then
we will move on.
Does someone want to join? I see Frank nodding his head,
and I think Bill and Gil would want in on this, too. Please,
PROF. FUKUYAMA: I would just second that. I
mean, I think that the consciousness is not just an inherently
interesting issue. It is very much related to what it means
to be a human being because human consciousness is really
different. It is the one thing you point to as being a kind
of unique human characteristic.
So I would just say that it is very important, connected
to the larger issues that we have been dealing with in this
Council right from the beginning.
Also, I think it is an area where the science has so many
holes in it at the moment that it is important to bring out
some of where the frontier is but also what some of the limitations
in the current understanding of the phenomenon are.
CHAIRMAN KASS: Bill?
DR. HURLBUT: Just to take your comment to its practical
meaning, the concept of consciousness and its relationship
to freedom takes us into what I think is an extremely important
emerging territory of ethics, perhaps the most difficult ethical
question of all. And that is the question of freedom, personal
responsibility as they relate to criminal behavior.
I think anybody in science and medicine recognizes that the
traditional concepts that have guided our adjudications and
penalties and so forth, that these are going to be challenged
by emerging science. Although that will be a long conversation
of many decades, it would be good for us to start that conversation
here as a Council.
CHAIRMAN KASS: Gil?
PROF. MEILAENDER: I'd express a reservation,
not stronger than that but a reservation, about the topic.
I would be happy to have us pursue it. There are interesting
and important questions to raise.
I think the best topics, though, are topics that engage us
at a theoretical level but that we can also see ways in which
actual ethical questions and decisions emerge from them, so
questions that sort of engage us at several different levels.
I am not at the moment persuaded that this topic will really
do that. I think it does raise some very difficult and interesting
questions. As far as I can tell at the moment, they're new
versions of questions that are actually very old and have
arisen in other ways.
So it would be interesting to pursue. I'm sure it would
be useful to pursue. It would I predict result in something
rather more like our "Beyond Therapy" document than
like some of the other things. I would, other things being
equal, prefer to see us move in a direction that crossed,
sort of held together those larger theoretical interests with
something that had some sort of policy, more immediate policy,
CHAIRMAN KASS: Mike Gazzaniga, do you have something
you want to say on this topic?
DR. GAZZANIGA: Gee, Paul, you know, when you make
such generous remarks like that, I think one is being set
up so that after you give your talk, we say, "See how
little we know."
As one who does lecture in and think, study this thing, I
know how little we know, but I think there is plenty there
for everybody to get their head around and to think about
its implications for the sort of issues that Bill just raised,
the utility of it being in terms of current concepts of personal
responsibility and the notion of free will. So I think there
is a lot there, but I am a self- interested party in this.
So you should decide.
CHAIRMAN KASS: But you are not waving this off.
Still on the same topic, Robby?
PROF. GEORGE: Yes. Thanks, Leon.
You know, I understand Gil's reservation, and I share Gil's
view that the best topics for us are topics that engage us
theoretically, engage our interests theoretically, but also
have public policy value.
It raises for me a general question when I think about the
exploration of consciousness and mind and freedom. Very often
I have noticed in our discussions, often our discussions with
guests who come to speak to us, that a topic or the policy
implications of a topic will be waved off because while the
day may come when this or that problem presents itself by
virtue of an emerging technology or an increase in scientific
understanding. That day is very, very, very far off.
Then other times, of course, we deal with problems that are
right on top of us and the science or the technology seems
to be moving more quickly than we can assimilate our own thinking
So in trying to get a grip, having in mind Gil's concern
here on whether I think this is a good thing to do, I would
like to know perhaps from Mike Gazzaniga or I probably should
have raised this question with our guests yesterday. I would
like to know how far we are from having to face real public
policy ethical choices about the use of imaging techniques
in the context of, let's say, criminal investigations or,
well, in some of the concrete areas that were raised yesterday
about prediction of behavior. Mike, I'll put it to you.
Are we 100 years off from that, in which case perhaps if
you share Gil's and my view about the best projects for us,
maybe we would lay this aside, or are we 20 years off? If
we're 20 years off, then perhaps somebody ought to be thinking
about this now, the ethical dimensions of this now. And there
is no other somebody around with the kind of governmental
license to do this. We're it. Maybe that's not a bad idea.
So can you say anything that would be helpful on that?
DR. GAZZANIGA: There are concurrently running conferences
that are addressing the impact of neuroscience on legal questions;
to take an example of the concept of culpability, personal
responsibility and what brain imaging might or might not say
about what, what neurochemical studies might or might not
say about that, what lesion studies might or might not say
about that. These are ongoing now. I sent Leon a paper that
I wrote on this topic.
In many ways, I am inclined to the position that in a lot
of these issues, neuroscience should butt out, that they don't
have anything to say about it.
So, on the one hand, the data is building that this information
will be used in various courts of law. But I actually caution
against using the courts of law for a long argument that I
won't get into here.
So it's on the table. It's in the system. The lawyers are
interested. The judges are interested. The judges hold national
meetings looking at this neuroscience data. There is one
going on at Dartmouth this summer where all the U.S. court
judges come and listen to the case of neuroscience. The neurogenetic
implications, it's all out there.
The question that both you and Gil raise or your reservations
are well- taken, but I think all that means is you should
got into it with caution and listen to what is being said.
The basic notion that the defense lawyers and many legal
scholars want to use is they want to explain away why Harry
killed Bob, because of the pixel in their brain. That's the
question. They want to remove responsibility from Harry.
Can we say that? Is that a viable idea? That issue is a
very complex issue at both the neuroscience level, at the
So they're fascinating topics. I think that you would enjoy
them. I don't know what we would do about them, but you would
all feel enlightened by the debates.
CHAIRMAN KASS: Charles, to the same subject?
DR. KRAUTHAMMER: Yes.
CHAIRMAN KASS: Please.
DR. KRAUTHAMMER: But that eminence would make it
a compelling subject for us. Clearly we're not sure when
the science will mature enough to justify these actions, but
you're telling us that these actions are happening right now.
I think we could have a lot to contribute precisely for that
reason. We could study the science that people bring to us,
make that public, and then draw our own conclusions. Especially
if this is just getting off the ground, I think it would be,
as public policy, a terrific public service if we did this
since obviously nobody else would do it the way that we would.
CHAIRMAN KASS: Robby, still on the same?
PROF. GEORGE: Yes, just to follow up with Michael,
which that was very helpful, Michael, to know. Could I ask
you further, in addition to the defense lawyers wanting to
explain that Harry performed this horrific act because of
something beyond his control, how close are we to this scenario
depicted for us yesterday of predicting that Harry will do
it or is much more likely than the rest of us to do it and
doing something about it?
I can imagine that different people would propose a range
of things, some of which would strike most of us as unethical
to do. If that's close, that strengthens the case further
I think for doing something.
DR. GAZZANIGA: Well, we are getting into it now.
That is the core question. There are people that would make
a strong claim that because so and so had a lesion in the
orbitofrontal cortex, this would explain why they have this
violent act occur and, therefore, they're exculpable because
of the lesion.
That claim is out there now. And there are qualified physicians
and neuroscientists who would argue this, the claim that that
is not an okay way of thinking about it from the same group
of qualified people.
So the debate is on. I don't want to get into it here because
it should be brought out in an orderly way. You should feel
confident that those issues are hotly debated and there are
two sides of the question as we speak.
DR. McHUGH: And could I just add to that? I didn't
talk with him before, before we came in this morning, but
I believe that what Mike is saying is exactly what I think
is the important things to be done here and that yesterday
it was not only the material that was being presented but
the stance that was being presented towards the issue of brain
and brain predictability about things which ultimately are
going to play themselves out in consciousness itself.
And until we as an ethics council really understand the limits
that the brain work can do for us and the place of consciousness
in its bidirectionality to the brain, I think we will miss
an opportunity to engage the public in a more coherent view
of where neuroscience is today.
CHAIRMAN KASS: Bill May, Michael. Charles, is your
DR. MAY: It seems to me that the level of payoff,
an application, not simply the forensic issues but also medical
issues of care, of Alzheimer's patients and arterial sclerotic
conditions, where you face personality changes and so forth.
And that relates to the perceptions and consciousness of the
world. So it's not simply forensic issues but also issues
in health care that would surface here at a practical level.
CHAIRMAN KASS: Michael?
PROF. SANDEL: I want to just add my voice to
what seems a strong sentiment around the table. Recall that
the sessions that we had with Pinker and with Cohen were among
two of the most engaging and lively and interesting sessions
we have had. Then with practical implications that have just
been even hinted at here, I think this would be a terrific
topic for us.
CHAIRMAN KASS: Charles?
DR. KRAUTHAMMER: I would just add that I found the
most compelling part of the presentation yesterday was that
clip from CNN Headline News. You can see how imaging
is so translatable to popular culture that I think it will
soon be used a lot to justify all kinds of crazy stuff. And
it seems to me that since that is just starting, we could
really contribute something by bringing a bit of a reality
principle and just putting out the facts.
For instance, I was interested to learn that there is a five-
second delay between the lighting up, which I had never heard
of before yesterday. And I read this stuff reasonably carefully.
And I think we would have a lot to contribute in this area,
I think it is a natural for us.
CHAIRMAN KASS: It sounds like there is, if not unanimous
support for this, very strong support. Let me make a suggestion.
I don't say I have a reservation. I have a concern about
how to organize this and how to focus this so that we are
not doing everything conceivable under this subject.
My suggestion is the way we should proceed is some staff
work with the help of our experts on the Council. This means
not just experts on the technical side but the kinds of questions
that we would like to have raised, forensic and other, and
see if we can't use the next meeting or two to begin to bring
in some additional people who could inform us on those subparts
that we would like to learn about and, by collecting certain
kinds of readings that we can discuss amongst ourselves, explore
this further and try to define it in such a way that we know
what we are doing and not simply, at the taxpayers' expense,
enjoying ourselves in interesting speculations.
I would like this to be somehow a useful thing. I can see
lots of ways it could be. But I think we have to work pretty
hard in order to formulate it so that would have a pretty
good chance of happening.
Is that agreeable as a strategy for going forward? Mike,
DR. GAZZANIGA: Well, I was going to offer another
suggestion that would contrast with this, equally as interesting,
I think, but I think fulfills for the people who have reservations'
agenda. That would be to have a full session on what modern
science knows about the developing mind of the child, both
from a neurobiological point of view and a neuropsychological
point of view.
Yesterday we heard from Bob Michels all of the ideas of sorting
kids by capacity and all of this sort of thinking. In there
is sort of an implied "genes-are-destiny" sort of
pitch. I don't think there is any modern neuroscientist who
really thinks that.
So the thing that I think we should all educate ourselves
on is what is known about the developing brain; what is known
about the young child's mind; putting it crudely, what comes
from the factory, what doesn't; what are the concepts that
are built- in, which ones are learned; what is the extent
that it is malleable and plastic, what is the extent that
it isn't; are things like temperament more under genetic control
All of this stuff is well worked on, well thought- out.
And it would set the context for so much of the discussion
about possible implications for education or not education
in a long list of the child.
CHAIRMAN KASS: Right. Suggestion. It is sometimes
much more economical for us to read than to simply bring some
people in to listen to them make a presentation when the papers
or an article or a short book is available. We are simply
going to ask you, Mike and others here, to produce a kind
This is a new terrain for probably most people here. We
can do some of our homework on this one between meetings by
reading, especially if it doesn't come ten days before the
If you can get us some references of things to get us up
to speed, that would be very helpful. And we can use our
invitations more selectively against an informed background.
This would be a very exciting thing to learn about.
DR. FOSTER: But I really want to speak strongly to
have live humans come in here to talk —
CHAIRMAN KASS: Oh, of course. Of course.
DR. FOSTER: — because the most important things
we learned were in questioning, not in what they said. So
I hope you're not arguing for simply a reading.
CHAIRMAN KASS: No, no, no, but that if Mike says,
"Look, there is this massive amount of stuff known about
the developing mind of a child" and some of this we could
get by reading and then get an expert in when we're suitably
prepped, absolutely, Dan, I agree.
Can we move from the neuroscience? Janet, please.
DR. ROWLEY: You know, it does suggest itself that
there could be an order since, to at least some of us, both
topics have attractions, that if we followed Mike's suggestion
first and got a little bit more understanding of the development
of the brain and then went into the area of consciousness,
that would seem a more logical order than the reverse.
CHAIRMAN KASS: Bill, do you want to say something
before we move on?
DR. HURLBUT: Just to affirm what Mike says, these
are very much related issues. For example, the work of Antonio
Demasio has shown that the development of certain empathic
capacities relates to later antisocial behavior. And it would
also be a realm, development would be a realm, where interventions
might be a very practical concern ultimately.
CHAIRMAN KASS: All right. Other topics? Rebecca
and then Mary Ann.
PROF. DRESSER: I support the neuroethics investigation,
but I think a nice counterpoint and something much more down
to earth would be some version of number 3, the elderly biotechnology
and bioethics, focusing on dementia and end of life, the overlap
Gil and I were talking. I said, "I think this is an
area that is pseudo settled in policy and ethics. There was
a lot of discussion 20 years ago, 15, 10." It has died
down. Now with this Florida case, it has come back into public
There has been a sense that, "Well, we just need to
make a living will, an advanced directive, and everything
will be settled." That's not at all accurate in practice
or in policy.
The last three high- profile cases have involved family disputes,
patients who had severe brain injuries, some statements, former
statements, about "This is how I would like to live"
and so forth, but nothing specific. There really is very
little guidance on how to proceed in those cases.
I think we could make a big contribution and then at a higher
level just a group like this talking about what does death
with dignity really mean today for our country and different
individuals, how should we think about it, how should clinicians
think about it, how should people think about it for their
family members and themselves.
I think it is an intrinsically interesting area. And I also
think it would be something to work on in parallel with this
more speculative area that could make a contribution to the
people who are paying our per diems and so forth. I think
it is very much needed at a practical level.
CHAIRMAN KASS: Continuing on this topic, Charles.
DR. KRAUTHAMMER: Yes. I would like to strongly endorse
that. I do think this is an area that really needs or could
use analysis. The Schiavo case in Florida did bring it up
It seems to me that it is cyclical. We get interested in
this. Every 10 or 15 years, there is a case. Right now there
is a kind of a lull. We had the euthanasia debate in Oregon
and, of course, Holland. That is going to come back.
It is now quiescent. We have got a war, and we have other
things to worry about. I think it is precisely because the
debate is quiescent now that we could do some rather measured
work on that.
I do think euthanasia, which is sort of one aspect of this
and perhaps it is the extreme case, but the whole study of
end of life, death with dignity needs a modern or a recent
new look at. I think we could do it.
So I would like to very strongly endorse that. Some people
will say it is another sign of the narcissism of the boomers,
"Now that we're going to die, we want to study this,"
but I think it needs study. And I can't think of a better
group to do it.
CHAIRMAN KASS: Alfonso?
DR. GÓMEZ-LOBO: On the same line, I really
think it would be important to study these topics of end of
life. Now, I find the question of the general care of the
elderly very important, I mean, not just euthanasia but as
our population is aging. As families are smaller and smaller
and people are put away in some nursing home, et cetera, I
think there may be for us as a community some very important
ethical issues. How do we treat these people who have given
us so much as grandparents, parents, et cetera? And there
may be, for instance, interesting findings with regard to
I admit that theoretically it is probably less interesting
than any of the other topics than euthanasia, but I sense
that there is a real question of justice involved in the care
of the elderly.
CHAIRMAN KASS: On this topic, Gil?
PROF. MEILAENDER: This was the topic among the
things that I was going to recommend before you all buried
me under your support for the neuroethics proposal. I actually
still think it is the best.
It raises some very interesting theoretical questions, actually.
The questions about personal continuity that dementia raises
are fascinating and every bit as complicated as any other.
But it also touches something that is about as fundamental
to our humanity as it is possible to get.
So there is that sort of rich human dimension to it. There
are some complicated theoretical questions, and there are
clear policy kinds of things. It just seems to me to have
all of the elements that a really good topic would have that
we could do something that is intellectually interesting and
also genuinely useful. So I think it is a good topic.
DR. KRAUTHAMMER: Could I add one point? It is missing
an element, embryos, which makes it extremely attractive for
that reason alone.
PROF. MEILAENDER: The demented person was once
an embryo, Charles.
DR. KRAUTHAMMER: Well, it doesn't involve a decision
about that. And because of that, I think it will allow us
to recapitulate a lot of our other debates, removing that
element, one that is sort of in some ways beyond discussion
and debate and compromise and will give us an arena to have
our other discussion I think uncontaminated or have I given
away our game here?
CHAIRMAN KASS: No. You have now changed the debate
from the debate about the embryo to the debate about whether
we should not debate about the embryo because Robby wants
to say something.
PROF. GEORGE: Well, this time I am the guy who
will raise the reservation.
DR. KRAUTHAMMER: Don't you dare.
PROF. GEORGE: And it actually arises out of what —
CHAIRMAN KASS: Oh, come on.
PROF. GEORGE: No. Honestly, it honestly does.
And here is the reservation. The reservation is if we go
to questions of euthanasia and physician- assisted suicide — now, there are other questions, like some of the ones
that Bill and I think Alfonso have talked about, care of the
elderly issues, on which I don't think we have this problem.
If we go to those very controversial issues, the Council will
be divided in a very fundamental way, the way we were on embryos.
And, in fact, it's not —
CHAIRMAN KASS: That's perfectly fine.
PROF. GEORGE: It's not —
PROF. SANDEL: How do you know it will be the
same division, Robby?
PROF. GEORGE: No. I am not saying it will be
the identical division. I am saying in the same way, not
that the same people will line up on the same sides, but it
will be in the same way. And it will be in a similar issue.
It is going to be the issue of personhood and whether there
can be post- personal human life, just as we argue about whether
there can be pre- personal or pre- conscious human life or
post- conscious human life.
Argue with me. Explain.
DR. KRAUTHAMMER: I will argue with you because I
think that you —
PROF. SANDEL: You don't have to argue because,
Robby, this is a reason for taking it up. So you agree.
DR. KRAUTHAMMER: Empirically if you look at our discussions
earlier on, if you get past — I don't know — six months
of gestation, I think all of us are unanimous here. It's
the early stuff that was uncrackable. Certainly at the point
of birth, that issue doesn't exist.
PROF. GEORGE: Charles, look at the literature.
DR. KRAUTHAMMER: May I? I'm talking about our own
CHAIRMAN KASS: I think it would be premature, since
you don't have your imaging of all of our brains, it would
be premature to guess how the discussion in this matter is
going to turn out. Yes, there are life issues here, but there
are life issues that don't depend upon whether you think the
embryo belongs in the conversation about the life issues,
the early embryo. That would be one point.
Second, I was originally very skeptical about this. In fact,
in the original executive order listing all the topics that
we might consider, end- of- life issues I think is the last
one or something like that. Actually, I probably have it
in front of me, but it was tacked on there by someone in the
White House who wanted to make sure that this was partly our
And I sort of winced because this is a tired subject. People
like Charles and myself and others who have written on this
subject, assisted suicide and euthanasia, felt, "What
else is there to say on this matter?" But the more I
have thought about it, the more I think there are good reasons
for us to take it up.
The demographics alone means that this is going to be a question
of increasing importance for the society.
Second, I do think that there is a way in which this Council,
given its predilections, does not simply treat ethical questions
as merely technical questions, has a way of doing exactly
what Rebecca has suggested, to lift up to view and show the
limitations of what has been a kind of bureaucratic and technological,
technical solution to these very complicated human questions.
Third, if you can take up the end- of- life decisions not
just as end- of- life decisions but as part of a larger investigation
of the questions about old age and some of their disturbing
features and the human implications of those, we would put
what is for many people the only question, mainly "When
do you pull the plug?" into the larger, richer, and important
medical and human context in which these decisions find themselves.
I think we can do that. I think we could show how to think
about those questions in a larger context.
So I think we would have all of that richness about which
Gil has spoken as well as an opportunity to do something useful,
socially important. And if we are divided on these matters,
we will be able to present the best possible arguments on
the various sides of these matters for the public discussion
because if we're divided on things, people are divided. I
think that is perfectly all right.
PROF. GEORGE: I think it is entirely possible
that we could issue a report that would be very much along
the lines of the human dignity and human cloning report, in
which the Council recommended by a vote of 10 to 7 in this
case a 4- year moratorium on physician- assisted suicide with
the 10 breaking down into 7 to 3 within that camp as to why
this is the case and the 7 breaking down to 4 to 3.
So I think there would be inevitably a fracturing here.
Now, that's fine if people think that that is a good way for
the Council to proceed because we've got the best arguments
out there and so forth. And we're happy to do it again.
Then that's fine. But if we're looking for a consensus approach
to things or a consensus document, I don't think this will
DR. KRAUTHAMMER: I don't know why you assume it will
be 10 to 7 or even split.
PROF. GEORGE: I am not prejudging what the vote
CHAIRMAN KASS: Gil?
DR. KRAUTHAMMER: I honestly don't know.
PROF. MEILAENDER: I still think this is a good
topic, and I would like to see us do it. I do think Robby
is right about the essential point. I mean, you couldn't
have read the bioethics literature for the last quarter century
and not see that there are close connections between the way
certain issues about personal identity get raised in the beginning-
of- life and end- of- life questions.
So that will come up. And we shouldn't take the subject
up supposing that it won't do that. It will do that. That
for me is not a reason not to take it up. It's in some respects
a reason to take it up. I'm not a big devotee of consensus
So I think it is a good topic. It's a rich topic. But the
notion that — we shouldn't deceive ourselves into supposing
that what you decide about some of those end- of- life issues
doesn't spin off in ways that have implications for what you
might think about the beginning- of- life issues.
CHAIRMAN KASS: Could I ask the medical people on
this — I don't want to suggest that we start talking about
things that have medical implications — whether this makes
sense to the three of you?
DR. McHUGH: I also have written on this subject.
I would welcome further discussion, but I agree absolutely
with Robby that the responses are out there in relationship
particularly to assisted suicide.
People seem unpersuaded by my prose, and they're not persuaded
by your prose, which is even better than mine, that this Oregon
exists out there in its world. It would be useful to bring
out, for example, in the Oregon experience that they promised
that this was going to be an experiment and now won't let
us look at the data.
I would love to have that out in the public arena that the
Oregon group said that assisted suicide would be something
we could do and learn from their experience as to whether
it was a good thing or a bad thing and then when others of
us came forward and say, "Okay. Let us look at the data,"
then they would say, "No. That's private." I would
be very happy to have that kind of information presented further
to the American public so that they could hold the line.
I agree with Robby that —
CHAIRMAN KASS: Both of you have chosen a way to narrow
the question to assisted suicide and euthanasia; whereas,
the staff has deliberately framed this question in a much
larger context. And Alfonso has spoken to that, Rebecca has
spoken to that, Gil has spoken to that.
PROF. GEORGE: Leon, I explicitly said that when
it comes to those dimensions of the proposal, you wouldn't
have this problem. But the proposal does include these dimensions
having to do with these very controversial and divisive issues
I just worry about us running up against the situation where
at the end of the day, we just say, "On these issues,
we just have fundamental value differences, and we can't get
past them. We're at an impasse, and we just have to live
with that" unless we think that getting the best arguments
out on the competing sides is a real contribution, which you
suggested and I don't doubt.
In that case, we will do it, but we should be prepared in
advance, I think, not to at the end of the day, then, find
ourselves trying to put together a consensus where one doesn't
exist. I think we need to in advance say we're prepared to
do this other —
CHAIRMAN KASS: In the executive order, it says that
we are not to be driven by an overriding need to produce consensus.
We have taken it where we found it. And where we don't have
it, we do the President a service and the nation a service
by making the best cases we can. We may not have done it
as well as we should, but I wouldn't be embarrassed by it
and I hope no one here would be, really.
Dan, do you want to say something on this for the medical
DR. FOSTER: No, I don't. I think that there are
many issues that have already been mentioned. We mentioned
care. And I think that Rebecca is absolutely right. In individual
cases, even if you have got an advanced directive, — we
go through this all the time — then families withdraw and
argue about it.
I mean, the guidelines are all there. There's not too much
issue about meaningful life at that point. But, as Charles
said, you go through these cycles. And you have to do it.
It's very complicated.
We are probably going to have to put into any discussion
of the care of the elderly here the economic consequences,
which are really huge, and to how are we going to care for
these people. I mean, even if you have somebody in a nursing
home and so forth, the expenses are way above what ordinary
people make right now anyway. They just can't pay it.
So that may be one of the most important issues that comes
up, a statement about the commitment of the nation to care
for its elderly and helpless at that point. I think that
would be a very large part of it.
I also think that the issue of the suicide — we don't have
time to talk about that now. I mean, it will doubtless come
up, but I would certainly hate to make that the major issue
that was there.
I would be more inclined for the bioethics of the care if
all of us, as we have heard multiple times, were once an embryo
and all of us once upon a time will have been old and are
going to die. So I think that that is something that is very
important: is the economic domains here.
CHAIRMAN KASS: I would second that in its entirety.
Are we okay on this topic? It looks like this is an area
also worth developing to the next stage, trying to articulate
the pieces of this better, find the people to come in, something
on the economics of the health care of the elderly. There
are some people working on this. They're befuddled. We'll
find out who they are and bring them in.
Other topics? Mary Ann?
PROF. GLENDON: This is really just another way
of looking at the questions relating to the care of the elderly.
I think that's a great subject for us. But I would be sad
to see it separated from two of the other items that are listed
here: number 2, children; and number 9, the distribution
of health resources.
One of the reasons I think that we would have a great contribution
to make if we kept those three topics together is plain.
If you saw the front page article in The New York Times
on January 8, it tells us more of what we already know. Spending
on health rose to a record level. Health care spending accounts
for nearly 15 percent of the nation's economy, and not only
the largest share on record here but a larger share of the
national resources than is spent by any other country. Yet,
we have this paradox that we know that we spend more on health
care than any other country, but somehow there are great gaps
in access to health care.
It seems to me with our emphasis in our reader and elsewhere
on the relationships among generations, what it means to be
human has something to do with our past and our future. It
seems to me that if we could keep these three topics together,
we could help to overcome what I perceive as the dominant
paradigm for discussing these issues today in our society,
which is one of conflict between generations.
It seems to me you don't hear anybody saying that the elderly
have a stake in the future and that all of us have a stake
in how we treat those who came before us and gave us what
we have. So I like all the topics that have been proposed
so far, but I would like to see a comprehensive approach to
the elder care one.
CHAIRMAN KASS: Any further comments in response to
Mary Ann, who has given us two additions? Michael?
PROF. SANDEL: Mary Ann has been a tireless advocate
of the ideas of the priorities in health care spending, both
domestically and also internationally. The footnote mentioned
the point that was contained in the "Beyond Therapy"
about the spending on baldness remedies versus malaria.
I think every time Mary Ann has brought that up, I've said
I endorse it. I realize it is not the most popular topic
for many people here and maybe feeling that this Council isn't
well- suited to take it up, but I think I agree with the point
Mary Ann has made on a number of occasions, that if we look
at the impact and the significance of the questions in a very
practical way that we're dealing with, this would certainly
rank among them.
CHAIRMAN KASS: Bill May?
DR. MAY: Behind the issue lies the question of the
status of health care as good. Is it an optional commodity?
And, therefore, the problem of access is not an acute problem.
But if you think of it as really a fundamental good, then
access to that good becomes very important to sustaining a
community. And specifically, as you have suggested, the relationship
of the generations to one another.
And the other issue is not simply the question of access
but the comprehensiveness of this system, the degree to which
it is not simply lopsidedly directed to acute care but to
other forms of service that touch on the question of not simply
death with dignity but aging with dignity, not that we can
guarantee dignity and age by an adequate comprehensive range
of services. "Everyday" is a word that is used
here. But we can offer assistance in sustaining a life with
dignity in the middle of aging.
I guess my question about that topic is whether this particular
group is equipped to approach these issues. It would require
if you're dealing with the systemic issues, you have to think
through. Economists and others would need to be brought to
the table to address these issues.
As a group around this table, well, oftentimes we have tried
to compensate for our deficiencies here by bringing in guests,
but there would be an awful lot of homework to be done on
this issue if it became central to the focus of this Council.
CHAIRMAN KASS: Paul?
DR. McHUGH: I would like to support Mary Ann's suggestion
very much because I think this interface, these interactions
of these three themes are terribly important and carry with
them a little bit of what she was saying that I want to underline,
namely the development of our attitudes towards our responsibilities
towards others, that there are often hidden agendas that are
proposed for us, sometimes economic agendas, other kinds of
agendas related to pain, and may, in fact, corrupt our attitudes
if we don't put them out and show them in relationship to
other values that we are committed to. So I would very much
support what Mary Ann is saying.
DR. FOSTER: The only issue that is worrisome would
be if we are studying all of life, it may be so big that you
couldn't possibly do it in the two years that you've got.
So I am more inclined to focus on, to me, the more acute problem
of the geriatric age group. If we had time to add the children
and economics, we are not going to solve that. The Institute
of Medicine has just had a new report out on health care and
so forth. But we could at least say that these are things,
not solutions to it, but these have to be addressed.
So I would rather do some smaller thing well than to try
to cover everything in a sort of superficial manner. It is
not to say that it is not critically important. And they
are all related, but I do worry about that.
CHAIRMAN KASS: Frank?
PROF. FUKUYAMA: I guess I still don't understand
what this topic is. Maybe Mary Ann could just explain a little
bit more what you propose because if it is the resource allocation
issue, then it does seem to be the broader national health
policy debate, which is just such an unbelievable complex
morass that I kind of agree with Bill that it is hard to see
how we could get into that usefully. Maybe you had something
more focused in mind.
PROF. GLENDON: I am not sure that I can outline
an agenda for the group, but I think the precise area that
we ought to focus on is the way in which this problem is currently
articulated as one of conflict between the generations for
scarce resources, rather than exploring the possibilities
of, for example, as some European countries do, encouraging
and helping with family home care, rather than policies that,
whether inadvertently or not, push people into institutional
care; the whole question of care- giving, who provides it
and how we value it in a society. Take a look at why health
care at the end of the life is so expensive and what that
means. I think right now all you can say is there is a problem
with thinking about this area of elder care separately from
other areas because it fuels the conflict model.
CHAIRMAN KASS: Anything further on this? Anyone
want to say anything more on the children side of this? We
have talked more about the medical resources question. Janet,
DR. ROWLEY: I was just going to make the comment
that to the extent that we discuss what is known about the
developing human brain and both the pattern in which it develops
and how we as a society could foster the full development
of those potentials in all children, we then could be focusing
on an extraordinarily important component of what children
really need, both educationally and in terms of home nurturing
and health, so that some of those topics could be brought
CHAIRMAN KASS: That is very nice. Again, I don't
think we can do everything and hope to do anything well.
We have to make some choices, but we can I think put our toe
in the water on a number of things and see where it goes.
I do think that I would second Mary Ann's suggestion that
one doesn't want to contribute to the conception of a society
that is advanced by the AARP, in which by the time you are
age 50, you declare a war upon everybody who is younger and
simply look out for yourself.
Yes, we have obligations. I never joined. It offended me.
Yes, we have to look out. And we have obligations to our
elderly population and the duties of care rooted in obligation
and love and justice, but in many ways, the state of our children
is perhaps even worse, arguably.
To have started in, we got a little entrance into this in
what we looked at with psychopharmacology and children. We
concentrated more on the beyond therapy uses, but one should
be I think even more impressed with the need for therapy on
the part of a growing number of children.
It was reported to us I think, as this was shared here, that
among the entering class at one of the elite universities
this fall, 20 percent of the entering class was on or had
been on antidepressants. That's not just better diagnosis,
I'm fairly confident.
It seems to me that if we could lift up not just the technical
questions of childhood but maybe beginning in the way Janet
suggests with the development studies and call attention to
the questions of bioethics in children generally, even if
we do it on a well- focused topic, I think that would be great.
Plus, that's, once again, not to reduce these questions to
their most narrow and technical formulation. We have the
capacity and the desire and I think the experience to do something
I know a couple of people have to leave about 11:30. If
they want to put their oar in for one of the other topics
before they have to go, I give them the mike. Michael? Dan?
Anything you would like to take up, Mike?
DR. GAZZANIGA: It touches on all of these things.
I don't know if it requires a separate category or not, but
I am intrigued with the problem of the overselling of medicine
in our culture. I think that is what is bankrupting everything.
It is a very complex problem. People have tried to address
it, but the vested interest in sustaining boutique medicine,
serious medicine gets so intertwined that you can't separate
out the good from the bad.
Epidemiological studies are carried out which show that a
certain procedure shouldn't be undertaken. And, yet, it continues.
It costs billions of dollars every year.
To have a very thoughtful effort of healthy economists coming
in, of physicians who have insight into this, who have thought
about it, I can't help but believe would be highly educational.
Everybody just assumes that every new little trick in medicine
isn't right. With that comes this bankrupting influence.
It is ruining institutions of higher education. We can't
afford these bills. No one can. Everybody has got the same
problem. And they solve it by just cutting things off wholesale
and not really analyzing the underlying problem.
So I don't know if there is a place for national conversation
on the overselling of medicine, but I think it is something
that ought to be considered by somebody.
CHAIRMAN KASS: Thank you. We had talked, you and
I, Mike, and we had Dr. Fisher come down and talk to the staff.
It may fit, really, with the resource question. And it might
fit also with our earlier concerns about medicalization as
fueled conceptually as well as economically and sociologically.
Maybe we should get Dr. Fisher to come down and address the
Council as a whole. He has done some very interesting work
along these lines.
Anything further on the list of possible topics? Bill?
DR. HURLBUT: Gil has spoken to the importance of
dealing with practical issues of immediate concern. As difficult
as it is, I think given the stage of science we are at, we
need to continue the dialogue on the issues raised in item
7, boundaries of the human, because the Dickey amendment and
several other recently launched legislative proposals relating
to issues from patenting of humans to cloning and so forth
use the terms "embryo," "organism," and
specifically "human organism."
I think somebody ultimately is going to have to define what
those terms mean because science will be very creative in
finding ways to produce ambiguous entities that may hold out
profound possibilities for progress and not actually evoke
the moral concerns that are associated with in some people's
mind the moral standing of the embryo.
I think in order to open the future possibilities in the
whole range of science, as we have discussed, all the way
from assisted reproductive technologies, which certainly we
will want to study the fertilization process, all the way
up to uses of developmental trajectories that will be engaged
in regenerative medicine, we are going to have to discuss,
somebody is going to have to discuss, the meaning of human-
animal chimeras, the definitions and significance of categories
of natural kinds, the generation of human parts, the parts
from wholes. Certainly as we move from genomic and proteomics,
now on to developmental biology as a major focus of the advance
in science, we are going to want to study embryogenesis.
We need to try to find ways this can be done with moral consensus.
To do that, I think we need to address the question of what
is the minimal criterion of the human organism?
Robby mentioned yesterday some suggestions that I and others
have made for the possible production or procurement of embryonic
stem cells through entities that are not necessarily entities
with moral status.
I think that we need to address these issues. I know they
are conflicted issues, but, on the other hand, we have an
opportunity as a Council to do something that no other council
will ever have the chance to do. And that is at this early
stage of the advancement of these particular sciences, we
can address, we can frame the terms of discourse, define the
terms of importance, and work to defend human dignity while
we open the science.
I personally feel as though we could make a great contribution
on that level and do something that does more than define
dangers but actually opens up positive possibilities; in other
words, a very constructive dialogue.
I know that won't be an easy conversation, but I think it
takes us beyond the issue of the conflict over the inviolability
of human life to an effort to find consensus on important
issues that relate to other secondary issues of moral concern
regarding obligations to nurture, defense of integrity, affirmation
of significant boundaries and transitions, definitions of
what an organism actually is and what a human organism actually
is. If we don't do it, I personally think we are failing
in our opportunities and our mandate.
So I feel very strongly personally about addressing the issues
in item 7. I just feel like it's thrust upon us and we should
CHAIRMAN KASS: Frank?
PROF. FUKUYAMA: I support Bill in this for the
reasons he gave. For example, in our work, in my work and
in your work, we use the term "human dignity" all
the time and "threats to human dignity" or "assaults
on human dignity." Now, I have my own definition of
what that is, but it's probably not the same as yours. And
I don't think that we as a Council have really grappled with
trying to come to some kind of consensus about what the essential
characteristics of our shared humanity are that we need to
In fact, that very word is becoming increasingly politicized
because the Europeans use it a lot. I know there are a lot
of Americans who said, "Well, this is just Euro- speak
for people who want to restrict technology, and it actually
has no substantive meaning."
I think AAAS or some body in town actually just had a conference
on the concept of human dignity to try to unpack the various
meanings of that, but it's not just a lexicological issue.
It's really a substantive issue about what we think ought
to fill that particular container.
CHAIRMAN KASS: All right. Let me make a procedural
comment. We have got some support for a number of important
things here. I think I know what some of the next steps would
be on some of them, I think on some of these others, perhaps
this last exchange...
By the way, the Council has come under attack for its use
of the term "human dignity" in the bioethics community,
"empty slogan." We have an obligation to try to
fill out something of what we mean here.
The staff had actually its first session. And we mean to
make it our own business to try to figure out what in the
world we are talking about when we talk this way. In particular,
if you are going to talk about the dignity of human procreation,
you had better know what you are talking about. So we are
going to do some of that in- house. I think the boundary
questions that Bill raises are an important manifestation
of that. I think we are going to have to turn to some individuals
here and ask you to draft some things. The staff can't simply
write on every one of these topics. I am fairly confident
that, Bill, I will turn to you, and Mary Ann for some help
elaborating some materials that the rest of us can read.
I am very encouraged by the discussion. I think we have
settled on moving the ball forward on a number of very large,
all of them important topics. There is probably more here
that we can do well, but we have got enough encouragement
from this discussion to begin to take the next steps and plan
for what promises I think to be a very interesting and I hope
fruitful next term.
We have run a little bit over, but we are now at the time
for public comments. We have four people who have asked to
make a public comment. If the Council members wouldn't mind
simply not taking a break, we will go directly to the public
comments. We will probably adjourn close to noon.
The first guest, Pamela Madsen, is the Director of the American
Infertility Association. Pam, welcome. Nice to have you
MS. MADSEN: Thank you for having
SESSION 7: PUBLIC COMMENTS
MS. MADSEN: Once again, it is my honor to come before
the President's Council on Bioethics as the Executive Director
of the American Infertility Association, one of the nation's
preeminent infertility patient advocacy organizations.
I am especially pleased to extend our thanks for your genuine
receptivity to the members of our community. We would like
to acknowledge and applaud the authentic discourse you have
engaged in with constituents of reproductive medicine from
patient groups, such as the American Infertility Association
and RESOLVE, to medical professional organizations, such as
the American Society for Reproductive Medicine and the Society
for Assisted Reproductive Technology.
The extent to which the outcomes of such conversations are
reflected in the new draft recommendations on biotechnology
and public policy is an encouraging sign of cooperation between
the government and those it serves.
We are pleased to see some of the most onerous provisions,
such as government tracking of each embryo created in vitro,
have been removed. We are relieved that the Council has clarified
its position with regard to third party family- building options,
such as leaving the decision to pursue embryo or gamete donation
or gestational surrogacy to the individual.
The American Infertility Association is gratified that the
Council has dropped its call for federal monitoring of our
children through the first year, avoiding what would be a
de facto compulsory registry. Instead, the Council's calling
for nongovernmental outcome studies, such as the American
Infertility Association's recently launched prospective study,
Footsteps: The IVF Children's Health study.
Participation in the AIA study is going to be purely voluntary.
Selection bias should be minimized, if not eliminated, by
enrolling women in the first trimester of an ART pregnancy.
We will have a control group, which for the first time will
be other infertile couples who have conceived through intra-uterine
injection. So we will be able to really look at the IVF technology,
which is so important.
In fact, patients are comforted that the Council's modified
draft explicitly states that participation in all federal
studies will be voluntary, which you know we support.
While the Council's recommendation to report data on the
cost of ART to patients as well as a number of ART patients
stirred controversy, the AIA believes that these really could
be useful measures. Our concern, as always, is that the information
gathering does not impinge on individual privacy and that
the data are presented in a consumer- useful context.
The Council has made moves in the right direction on these
issues. Further, the AIA is delighted to see that in this
incarnation, the draft recommendations call for a more uniform,
user- friendly informed patient consent forms as well as an
internal review board- like body at each center that uses
experimental technologies in the treatment of infertility.
We also wish to acknowledge the Council's advance towards
a more open dialogue by dropping some of the more ideologically
loaded language that laced the initial draft. We are so pleased
that the Council refers to an embryo as an "embryo"
and not as a "child to be" or "future child."
The gesture has profound consequences, but we believe that
it does not go far enough. We would be happy to see even
more of that removed.
To call a pregnancy resulting from sexual intercourse "natural
conception" implies that there is something unnatural
about assisted conception. As I said before, my kids are
100 percent biological and natural at all times.
The infertile are, as I said before, lucky to have kids.
We don't want to see any of this language about natural/unnatural
kids in there. It does affect how our children are perceived.
Language is very powerful.
We encourage the Council to continue to review its language,
recognizing that it has a lasting effect on the social and
political environment and the lives of thousands. There is
one element conspicuously missing from this draft, and that
is a recommendation for mandated coverage of infertility treatment.
We believe that insurance would solve a host of problems.
And we hope that the Council would put its considerable muscle
behind an insurance initiative.
When you call my doctors an "industry," you only
are calling them an industry because we are not covered by
health care. So language is important. And language will
be changed by social policy to just caring for the infertile
people as patients and our doctors as our care- givers. Please
don't call it "industry." When we are patients
in treatment, we see our doctors. We are not going to Ford.
Again, the American Infertility Association extends its gratitude
to the Council for the opportunity to be heard and to have
its concerns and suggestions treated with a great deal of
respect. We look forward to continue to work together, heartfelt
CHAIRMAN KASS: Thank you very much.
Ordinarily I wouldn't respond, but I do want to say that
that language "child to be" never meant anything
other than what it now says it is. We were struggling for
a way to talk about effects on children born with this procedure,
which effects are produced at a time when the children are
not yet born. It was a complete misunderstanding to say that
that was meant to be an embryo in that discussion. And that
was clarified I think with everybody long ago.
Thank you very much. I am also not pleased with the reference
to this as an "industry." And that will come out.
I have never liked it.
The next comment is from Sean Tipton of the ASRM. Excuse
me. Do you want to comment?
PROF. MEILAENDER: I would like to make a brief
comment if that's okay.
CHAIRMAN KASS: Please.
PROF. MEILAENDER: I simply wanted to note it's
a bit churlish to have someone thank you and then to not quite
take the thanks, but it's my understanding that we haven't
reached any final deliberation about some of the items that
Ms. Madsen mentioned and whether they will or will not appear
in whatever final report we bring about. So I simply want
to note that I don't think we are at the end stage of our
CHAIRMAN KASS: Sean Tipton, welcome back.
MR. TIPTON: Thanks a lot. I really just wanted to
thank the members of the Council and Chairman Kass and the
staff for the opportunity that we have had for input. We
hope that the report is at least better informed than it would
have been otherwise.
I am so used to not needing microphones I always forget people
have to worry about taping and things.
There is certainly a lot that we like in the report. Predictably
and perhaps appropriately, we don't like everything in the
report as it exists. I do want to talk a little about the
question of including the data on the health of the children
at one year out in the registry because I think that what
is important to consider is the question of quantity versus
quality of that data because I think that if you put the one-
year health outcomes in the registry, you will have a nice
data point on what will probably be the 50,000 children born
every year by the time that gets implemented.
However, I am not sure the quality of that data is going
to be very good because in the real world, it is not clear
how that data is going to be collected. Will it be the reproductive
endocrinologists calling somebody in the infertility clinic,
calling the parent, saying, "How is your kid?"
Probably the best you can hope for is a form going to the
pediatrician's office, having dealt with all the privacy concerns
to make everything HIPAA- compliant. Then you will get an
administrative person in the pediatrician's office who is
going to go through and flip through a chart and see if there
is anything really big written there.
So I am not sure that the quality of that data is going to
be really good. You would have tremendous reliability issues
between the assessments of those children. I think in terms
of what I think you want to get, which is a question, being
able to address the question of the safety of the circumstances
of the conception on the children subsequently, I think you
would be far better off getting that data through a carefully
designed prospective study. So I think you need to consider
We appreciate the thoughts that the Council has given us
on the behavior of the field and of our organization as a
representative of the field. We have chosen and are proud
of the role we have played, being primarily educational and
a standard- setter. We have not been generally a punitive
sort of organization. The question of to what extent that
needs to change or to be added in is something that is under
considerable discussion within our membership and our leadership.
So we really do thank you for your thoughts on that.
Now, I am positive if we brought 15 infertility physicians
in here and asked them if they had some thoughts around how
the bioethics community should behave, they would probably
have some ideas. I am not sure that they would be as carefully
considered as what you have offered us, but it is worth talking
Finally, I do want to talk about I think inadvertently I
fear that you are contributing to a problem. And that is
the perception of commodification of reproduction and of reproductive
materials. I think by calling for a collection of charges
to be included in the registry, I think that is a very different
creature than a question of how often what technique is used
and why and what the outcomes were. I think by collecting
charges, I guess I would ask for a little more attention to
why you think that is important to be included and what that
contributes other than satisfying some curiosity.
We would agree that would be interesting to know. We have
had some concerns about our own ability to collect that for
a restraint of trade issues. So I think that is an important
I would agree — and I appreciate Dr. Kass' support in terms
of a question of the characterization of this field of medicine
as the infertility industry. It actually doesn't appear very
often in the report, but those words are heard constantly
around the table. That may be by design, and that may be
by intent. Obviously, then, that is fine.
I think if you were to go this morning and we could look
and see what is happening in infertility clinics around this
country, you would see patients and their partners seeing
physicians and allied health professionals trying to overcome
a medical problem. You would not see natural resources inputs
trying to manufacture products. We certainly don't see it
that way. The patients don't see it that way. And we would
ask for it not to be described in that way.
CHAIRMAN KASS: Thank you very much. It was very
nice to see you this morning in the Washington Post.
Susan Poland has the last public comment. Welcome back.
MS. POLAND: It's still morning. Thank you. Good
morning. I am again speaking as a private citizen but building
on my experience with an IVF lab and doing basic research,
working at the Kennedy Institute for 20- some years and reading
Bioethics and also with my legal background.
I don't have a prepared statement. So forgive me.
I was struck yesterday by the comment about the one- year
monitoring of children born with reproductive technologies.
My comment really is very short. I would like you to consider
oversight of a genetic technology, not a reproductive technology.
The one- year term, if I were an IVF patient, type A, a movie
star or somebody, I would be very intimidated by the fact
that you want to monitor how I am taking care of a child.
If I were a doctor or an ob- gyn, I would think, "Oh,
my God. How are they going to sort out the trauma of disease
or anything caused by birth with what might have been caused
at the formation of the genome?" or if I were a vaccine
doctor, someone there. So there are a lot of things that
can happen in that one year.
I would suggest that you look at maybe getting a genetic
sample, just like you do with blood for PKU. It is very easy
I think to sell to someone saying, "We're looking at
the technique, not you. This is going to be anonymous, not
anonymized." It just goes back through to the federal
government, which will verify that there was a live birth
from this clinic of a healthy baby and then look at that genome
to compare it with other genomes.
And on the fact that it is a genetic technology, it is regarding
the making of a human genome, not the mapping of one, but
it could be done already under the guise of what is at NIH
now, whether the Human Genome Institute or the National Human
So I think the problem is one of words, the term "assisted
reproductive technologies" became a term after IVF.
And it went back in time to include artificial insemination
by donor and husband. I again say it's not the third party
element, but it's the third party plus the extra- corporeal
fertilization that we're concerned with.
I also think, lastly, that the public actually needs to benefit.
This has been a relationship going on between private parties,
patients, and physicians for a long time. And with the rise
of genetic or passing of viruses from animals to human and
then human to human,- - whether it's SARS or through Mad Cow,
which we call BSE; and then Jacob- Kreutzfeld,-- in the long
run, we might have had more information about how these diseases
work if we had been watching how genomes and the human genome
work and interact in comparison to animal.
CHAIRMAN KASS: Thank you very much.
I realize I have made a mistake and owe an apology to Erin
Kramer. My bifocals missed the line. Erin Kramer from RESOLVE.
Welcome back to you.
MS. KRAMER: Thank you. Thank you for the opportunity
to comment. I am here on behalf of RESOLVE, and we appreciate
First, I want to address the media advisory that we issued
a couple of days ago as I understand that it struck some members
of the Council negatively.
I just want to have you understand that a committee of individuals
who are part of RESOLVE have spent a considerable amount of
time, a great deal of time looking at the various drafts that
the Council has put forth as well as the overview of the ART
document. And it was from those drafts that we have felt
that infertile patients would be adversely impacted.
In our media advisory, we hope we tried to make clear; in
fact, we thought we made clear, that the comments, that the
concerns that were listed there were about the previous draft,
not about the draft that was issued yesterday.
Understandably, though, we apologize for the timing of that
release. And perhaps the timing could have been different.
But it really was meant to address the earlier drafts and
the concern we had about the way the proposals were written
in the earlier drafts.
Having looked at the new draft of the proposals, actually,
we were quite pleased about the changes that were made and
appreciate the fact that we have had the opportunity to meet
with the Council and the staff and to let them know where
there might have been ambiguities and where we think that
some of the most potential problems might arise. So we are
very pleased that those considerations were taken and that
changes were made.
We are pleased that the issue has been set aside, at least
in this draft, of the mandatory government tracking of untransferred
embryos. We do think it is preferable to gather data on outcomes
for children with a longitudinal study, gathering information
that way, as opposed to a new mandatory reporting system that
would involve layers of doctors, which we think is very unworkable.
We do appreciate the voluntary nature that is now in the draft
of the participation in these things. So we are quite pleased
We do agree with some of the comments that were made yesterday
by Janet Rowley, though, that some of the concerns in this
medical area could be addressed by policies that recognize
the link between the lack of insurance coverage and the potential
for adverse outcomes in births. So we would like to see more
of that language in there.
As a broad matter, we do appreciate very much the opportunity
that the patient advocates have had here and trust that that
will continue. When this document that you create goes before
Congress, we also hope that we will have that same equal opportunity
there. We think the patient voice should be very prominent
in these discussions.
CHAIRMAN KASS: Thank you very much. And thanks to
all of the public commenters this morning.
Please, Mary Ann.
PROF. GLENDON: Yes. While we are handing out
thanks this morning, I would like to thank the speakers because
it is always so interesting for a citizen to see how the lobbying
I also want to express thanks for the correction of using
the term "industry" because technically that is
not quite the right term for this profit making- business.
I won't use it again.
CHAIRMAN KASS: Let me say just a funny little word
in relation — because all of the speakers came forth to
really speak about the forthcoming report on biotechnology
and public policy and that area. We obviously made some kind
of an error early on, despite the fact that we said repeatedly
in our discussions that we were not here interested in taking
on the profession of assisted reproductive technologies.
In fact, our only interest in reviewing that activity was
this is the gateway, this is the gateway technology to the
adjunct technologies that are coming based on genomic knowledge
and that if you are thinking about the regulatory and monitoring
process overall looking to the future, you have to start by
knowing where you are here.
Where we are here is only in this area of assisted reproduction
with a few little wrinkles being added in. We began a diagnostic
document on how is this current practice is monitored, overseen,
and regulated. Somehow, despite our repeated insistence that
infertility patients, we were not trying to get in the way
of their receiving treatment, we were not trying to police
the profession of assisted reproductive technologies, we must
have sent the wrong signals or you people must be simply nervous
or my reputation, which preceded me, has not been allowed
to be judged on the basis of what people have seen here.
But I am very glad that as a result of the extensive conversations
that we have had with RESOLVE, with ASRM, and with the American
Infertility Association, that I hope at least that the perception
of our intentions and the spirit of this inquiry have been
clarified and that while we will continue to disagree about
this, that, or the other, it ought to be clear that those
disagreements do not rest upon those grounds that we have
sometimes been accused of holding.
People's perceptions will continue to be what they are, but
I welcome this morning's comments as a kind of not exactly
a love fest. We still probably have our differences, but
at least I think we understand each other better. And I would
like to express my gratitude for the generosity of spirit
of the comments that have been made to acknowledge that fact.
So thanks to all of you, both for what you have done before,
for what you have brought yourself to say here publicly this
morning. And there obviously will be opportunities for us
to continue to work together and correct, continue to correct,
misimpressions and misperceptions of the things we are interested
in. So thanks. Thanks for today and for what went before
Last- minute words?
CHAIRMAN KASS: Go in good health. Be well. We will
see each other in April unless there is an emergency meeting.
There is a date on the calendar. I don't remember what it
is. But we are unlikely to be emerged.
(Whereupon, at 11:58 a.m., the foregoing matter was adjourned.)