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Thursday, October 16, 2003

Session 1: "Beyond Therapy": Council's Report to the President

CHAIRMAN KASS: The purpose of this first session is to officially release a new Council report, a document entitled "Beyond Therapy:  Biotechnology and the Pursuit of Happiness."  Copies are at your desk.

It is the product of a 16-month project for us, an inquiry into the significance of present and potential uses of biotechnology that go beyond the healing of known disease to serve a variety of other human goals and satisfy widespread human desires.

In many ways, this report is quite different from anything that previous bioethics councils have done in the past, and also from other work that this Council has published and will publish in the coming months.  So I want to say a few words about just what this project is and why we have taken it up in the way that we have.

By all accounts, we are entering a Golden Age of Biotechnology.  Advances in genetics, drug discovery, and regenerative medicine promise cures for dreaded diseases and relief for terrible suffering.  Advances in neural science and psychopharmacology promise better treatments for the mentally ill.  Techniques of assisted reproduction have already allowed for over one million infertile couples to have their own children.

Without such advances, past, present, and future, many of us would lead diminished lives or not be here at all.

Yet it is pretty clear to everyone that along with the enormous promise and hope, the Age of Biotechnology will also bring with it some novel and really quite momentous challenges.  That's, after all, why we're gathered here.  It's a big part of the reason for the very existence of bioethics and for public advisory councils like this one.

We sense that there are serious challenges to contend with in this area.  Some of these, like those involving the safety of new techniques, the questions of equitable access, and the need to provide for informed consent and to protect the human subjects and research are of the sort that our society is fairly familiar with, and we have a basic starting sense of how to deal with them.

They are tremendously important and serious, and they deserve the public attention at the highest level, but they are connected with a set of basically agreed upon common ends in our society, the value of health and safety, of equality, and offreedom.

But it may well be that the most challenging and in some ways the most crucial questions we need to address in the coming age of biotechnology are not so much about what is safe or how to allocate resources or benefits or similar hard and important questions.  Rather, they might involve what we want to do with our new abilities and powers and how they might change our lives and those of future generations as individuals and as a society.

In short, these will be tough questions about the wisdom of our ends and the benefits and harms of pursuing our ends, even our worthy ends, by these new biotechnological means.

In the case of the new technologies employed in conventional medicine, the answers about ends are quite clear.  We want to heal the sick.  We want to relieve the suffering, and our new abilities might let us do so more effectively.

Some crucial questions of means remain, but we basically agree about the ends.  But the same technologies will have the power to reach far beyond the traditional domain of medicine and allow us perhaps to alter or improve our bodies and minds for ends other than a restoration of health.

To what ends beyond therapy should we put these technologies?  And what might be the consequences of pursuing those ends using our new biotechnical powers?

As I say, these may be the most vexing and most crucial questions posed for individuals and societies in the Age of Biotechnology, and they are questions that don't fit neatly into any of American categories of agreed upon ends.

They are also, I believe, a good part of the public's disquiet regarding the Biotechnological Age, worries that the new technologies may be used in ways that could undermine or degrade human life.  Beginning, therefore, to concretely pose these questions for ourselves and beginning to think seriously about what human life in the Age of Biotechnology might look like seem to us to be among the most important purpose of bioethics today.

And a body like this one, with a public charge of responsibility but without necessarily having to answer to every political pressure and exigency of the moment seem to us to make us the right body to do so, and I remind you that it does fit with the President's first charge to us, namely, to conduct fundamental inquiry into the ethical and human significance of advances in biomedical science and technology.

In educating ourselves to undertake this work, we had presentations from experts on drugs that affect mood, behavior, and memory.  We had presentations on drugs and genetic modifications that would alter physical performance, choose sex of children; that might modify the process of aging or extend the maximum human life span; that would produce genetic alterations of muscles, and also we had discussions of the possible enhancement uses of preimplantation  genetic diagnosis and directed genetic change.

We had many Council discussions on these subjects.  We had papers from some members, including wonderful papers from Michael Sandel and Gil Meilaender and Paul McHugh, and we had staff-prepared documents on all of these subjects.

Altogether we devoted over 20 Council sessions in public meetings to this subject and a lot more time and effort between meetings.

In working to present our reflections in this area, we decided to organize the presentation not around the technologies themselves, but rather around the desires and the goals that either drive our interests in these techniques or that will enlist the available powers they make possible, desires for longer life, stronger bodies, sharper minds, better performance, happier souls.

That way of approaching these matters enables us to think about how these new powers fit with previous and present human pursuits and aspirations, not necessarily mediated by technology, and I do think that it's one of the great benefits of regrouping them in this way, and it's one of the reasons for the unusual arrangement and approach of this report.  It made it much more difficult to write, but it is my hope that this way of presenting things will make it apparent that the fundamental issues here are questions of human character and desire and aspiration rather than just of new techniques and new knowledge.

The report, as you will see, takes up different scientific and technologic possibilities, but each in the context of one or another human desire that seems most likely to guide their application or use in the future at least beyond therapy.

The report is in six parts.  An introduction lays out the reasons for the study, covering in greater depth points I have just made.  Then there are four central chapters:  better children, superior performance, ageless bodies, and happy souls, in each of which we explore the meaning of the goal and evaluate the possible new means for achieving that goal and the ethical and social implications of possible success.  And there is a final chapter of general reflections, trying to put things together.

Under the heading of "Better Children," we've taken up new technologies that might enable us to improve both our children's native capacities through genetic knowledge and their behavior and performance through pharmacological intervention.

We already have today tests, techniques to test early embryos for the presence or absence of many genes.  Should we use these techniques only to prevent disease or also to try to get us better children by selecting for genes we believe might be related to some desired traits or aptitudes?

Should we choose for sex, which in technical terms is already relatively easy to do?

Or, talking now about behavior, we have seen the widespread use of behavior-modifying drugs in the treatment of attention deficit disorders in children, where the drugs are immensely valuable treatments.  But what would be the implications of using these same drugs for the general improvement of concentration or focus or behavior even in children who do not meet the diagnostic criteria for attention deficit disorder or any other?

Should they be used to aid test takers or to improve mental stamina?  And what would it mean if they became widely used?

This chapter on better children raises questions about the meaning and limits of parental control and about the character and rearing of children in the coming years, and it touches on issues of social control and conformity and the question of medicalization, of moral education, and finally, a larger kind of question about the meaning of childhood altogether.

I should point out that it is important in all exercises of this kind to try to separate fact from science fiction lest one stir up people's fears without cause.  In this discussion in the second chapter, we paid special attention to the much discussed prospect of genetically engineered designer babies in which parents might be able to select in advance and scientists might be able to provide children with the traits most desired.

But we conclude in fairly emphatic terms that this is rather farfetched prospect, and that people should relax.

The third chapter on superior performance takes up the issue of improving performance through biotechnical means and asks just what it means to seek superior performance using some of these technologies of either genetic or pharmaceutical enhancement, like injecting genes into muscles to dramatically improve their strength and physical ability.

In that chapter we use enhanced athletic performance as our prime example not because it is necessarily the most pressing area of concern, but because we thought it might most clearly highlight the issues at stake and enable us to explore the differences between more traditional methods of enhancing performance and some new and forthcoming biotechnical ones.

Looking at sports permitted us to ask about both the meaning of excellence and about the meaning of the humanity of excellent human activity, and to inquire how new approaches to superior performance might affect the way we act in the world and the way we conceive of our own bodies, our identities, and our own activity.

The fourth chapter deals with technologies that aim to satisfy our desires for ageless or ever youthful bodies.  It looks at the latest advances in aging research, including some astounding extensions of life in worms, flies, mice, rats, and other laboratory animals, and the potential implications of such work for extensions of human longevity and the maximum life span.

We considered techniques both modest and bold, possibly soon to be available interventions to increase the strength and vigor of muscles of the function of memory or various efforts, somewhat more futuristic to retard the general processes of biological aging and to increase the maximum human life expectancy.

This chapter asks if we should use the growing power to affect aging only to diminish the bodily and mental infirmities of old age or also to engineer larger increases in the maximum human life span.  We make clear the obvious and powerful appeal of such techniques, but try to think through how the human experience might be different in a world of substantially extended life spans and how longer life might affect individual outlooks, engagements, and motivations, as well as the dynamic character of society and the prospects for its invigorating renewal.

Finally, in Chapter 5 we look at what might be the most powerful desire, the desire for happy or contented or satisfied souls.  It's clear that we're already gaining new techniques for altering mental life affecting memory and mood, among other things.

At this point some of these techniques are being used to treat major depression and other very serious psychiatric conditions.  Alas, too many people who might benefit from such therapy still go undiagnosed in part because of the stigma that still attaches to mental illness.

But the potential for uses beyond such welcome therapeutic interventions is obvious since there are times when all of us wish we might have some help in being happy or more content in our lives, and some emerging techniques might offer that in the form of drugs.

Should we use these technologies only to prevent or treat mental illness or also to blunt painful memories of shameful behavior, transform a melancholic temperament, or to ease the sorrows of mourning and diminish the anguish and stresses of everyday life?

This chapter raises questions about the connection between experienced mood or self-esteem and the deeds or experiences that ordinarily are their foundation, as well as the connections between remembering truly and personal identity and other crucial aspects of our mental life.  And it wonders about what the availability of agents to correct our discontents will do to the nature of human aspiration or the character of our society more generally.

The report concludes with a final chapter of general reflections that seeks to tie all of this together and which I think makes the crucial point for understanding this report.  While we take up these individual technologies and these individual motivating desires one by one, the key is to see them all together affecting our world all at once and affecting one another.

They are part of one big picture, the pursuit of happiness and perfection in the new age of technology.  Taken together they raise these overarching questions:  how shall we live in years to come empowered by biotechnology?  What kinds of human beings and what sort of society are we likely to create and at what gains and costs to our humanity?

Let me say one word about the spirit of the enterprise to be clear about what this report is and is not.  Our aim in this project is primarily educational, not primarily political or practical.  This report contains no assessments of policy and  no particular recommendations for action.  We raise more questions than we answer.  We do not make ringing moral judgments.

There are more immediate policy oriented matters that we have been called upon to address as a Council, and we have certainly been working hard at those as our other work demonstrates.  But here we wanted to take a step back and to clarify in an educational way the character of some challenges that we as a nation will have to deal with.  These will very likely be pressing issues of policy in some form or another for some future bioethics council and certainly for the country as a whole.

And our ability to deal with this well into the future will be greatly helped if we begin now the work of thinking through the significance of new and coming advances. 

We do not pretend to see the future, and certainly there are differences of emphasis and some disagreements on particular questions of science and of ethics among us and the Council, and these are reflected to some extent in the document.

But this report, above all, tries to point up the crucial questions and to suggest some possible avenues for addressing them.  This is why we thought it was important for a body like ours to take up this subject now and why we have done so in the way that we have.  These issues are not simply futuristic.  Current trends make it perfectly clear that the push beyond therapy is already upon us, and we would do well to give this subject serious thought.

We hope by this report to spark some thinking and some conversation about what really have to be the fundamental questions in bioethics and truly critical questions for our country in general.  What goals are worth pursuing and what goods are worth defending with our new biotechnical powers and how shall we live well in the Age of Biotechnology?

Before turning over the floor to fellow Council members for any comments they might wish to make, I do want to express on behalf of all of you my gratitude to members of the staff who worked heroically on this project, beginning with memos to help outline the project, drafting multiple stages, and in the many, many months of drafting, redrafting, editing, et cetera.  Staff has been absolutely tremendous.

And I want to thank, in particular, some of our primary draftsmen, Yuval Levin and Eric Cohen; Dick Robin who did a lot of the drafting and worked on the science.  Adam Wolfson, no longer with us, did the work on sex selection.  Adam Schulman, not here today, did a lot of the editing.  Laura Harmon was the production manager who formatted everything and the hours to meet the production deadline sat at the computer with various prodders standing over her shoulder to make sure that everything was done properly.  Audrea Vann designed the cover, and Dean Clancy with his magisterial efficiency supervised the entire enterprise, and I want to thank them all very, very much for their heroic work.

I have comments from Frank and Mary Ann, but I will wait, and I would like to turn the floor over to anyone who would like to make some comment on this report or on something related to it.  The sad fate of the Cubs and the joys of the Red Sox are for another occasion.

Who would like to start, if anybody?  Alfonso.

DR. GÓMEZ-LOBO:  If you will allow me to read a brief written statement, I want to be very precise here, and this should convey my own thoughts and my own interpretation of the project.

Therapy is a word employed to identify an activity that since the ancient Greeks has been governed by a specific goal:  the good of health.  Although there have been theoretical challenges to the normative concept of health, physicians for the most part know what they're doing when they diagnose a physical illness.  They know how the healthy organ or system should function and are, thus, able to detect any failings or malfunctions.

To go beyond therapy is to move beyond health into a territory where at first sight there seems to be no univocal normative concept that provides a goal or target.  Biotechnology, as our report suggests, is already taking us beyond therapy and promises to take us deeper and deeper into the new domain.

Are we totally at sea within it?  Yes and no is our reply.  On the one hand, there are discernable trends in the use of specific measures.  People seek better children, superior performance, younger bodies, and happier souls.  These are in one sense worthy goals, but as the report shows, these are not goals that leave us at ease.

All of them have a mixture of questionable aspects:  domination of children, domination of agency, generational asymmetry, shallow feelings.

The biotechnology that is taking us beyond therapy is actually the latest and most striking form of a broader cultural phenomenon, the relentless advance of technology in general.  We live less and less in a world in which things grow on their own and more and more in surroundings manufactured by ourselves.  Indeed, the word "manufacture" is eloquent because it conveys the idea of something being made or produced by hand.

The human hand, however, is an instrument of the mind in its productive mode.  Reproduction, i.e., having children, for example, is increasingly becoming a manufacture, an operation the product of which is more and more an object of design.  The child's features thus become the result of reproductive choices.  Reproductive cloning if it is ever accomplished would be the ultimate imposition of design for it involves choosing the very genome of the child.

Technology proceeds, for the most part, by small steps each of which seems attractive and innocuous.  But when we stop to take stock, serious questions arise.

Each purchase of a car seems good and beneficial, but by now major cities around the world have become clogged with vehicles.

One case of IVF treatment seems to be a wonderful occurrence, but 400,000 frozen embryos is worrisome.  Choosing the sex of one's child appears to be a legitimate exercise of freedom, but the paucity of girls in certain countries can lead to undesirable social imbalances.

Technology cannot be stopped, it seems, and our report does not aim at doing that.  It includes, as Dr. Kass said, no policy recommendations.  It is rather an effort to call attention to the perils of going beyond therapy, but our report is not taking a negative attitude vis-a-vis the enterprise as a whole.

How does it accomplish this?  If I correctly understood the subtext driving the  meditation, the report ultimately postulates a goal analogous to the goal of health for therapy.  It is the age old ideal of the flourishing human life.  It is only from such a vantage point that we can start to evaluate and put in perspective such narrow goals of biotechnology as muscle strength, perfect babies or bodies that last indefinitely.

In one of the most eloquent passages in the report, which I am eager to highlight for our benefit and the benefit of the general public and which I dare say bears the imprint or our Chairman—I was about to say "glorious Chairman," but I'll omit that—


DR. GÓMEZ-LOBO:  The good life is sketched as follows, and I will end with this quotation.

"For us today, assuming that we are blessed with good health and sound mind, a flourishing human life is not a life lived with an ageless body or an untroubled soul, but rather life lived in rhythmed time, mindful of time's limits, appreciative of each season, and filled first of all with those intimate human relations that are ours only because we are born, age, replace ourselves, decline and die and know it.  It is a life of aspiration made possible by and borne of experienced lack of the disproportion between the transcendental longings of the soul and the limited capacities of our bodies and minds.  It is a life that stretches towards some fulfillment to which our natural human soul has been oriented, and unless we extirpate the source, will always be oriented.  It is a life not of better genes and enhancing chemicals, but of love and friendship, song and dance, speech and deed, working and learning, revering and worshiping."

Thank you.


DR. MCHUGH:  Well, Leon, I just want to say how much I appreciate this piece of work the Council has done, and with you want to thank the staff, and with the rest of the members of the Council thank you for bringing this out.

As I told you, I think this is going to be the most important aspect of our ethical considerations, following on the President's request that we spur public discussion on these matters, and it is in this area, in particular, that the public needs to have the kinds of information and the kinds of thoughts that are transmitted here.

I also though wanted to say a few words about the issues that relate to psychiatry.  Charles and I have frequently made points about our concerns about psychiatry, and some of them might be misread in this report, and I want to make sure that everyone appreciates that we think that psychiatry has made tremendous advances.  Certainly in both of our clinical lifetimes, we have seen wonderful advances from the psychiatry that we were taught at the beginnings.

We saw the advancing of a categorical system of diagnosis that brought some coherence to the field.  You'd have to appreciate what the field was like before there was this coherence to know how pleasantly and happily we greeted that partial step towards a more coherent discourse in psychiatry.

We also, of course, celebrate and continue to celebrate the discoveries in psychopharmacology, much of which are being discussed here as their extensions, but I do want to emphasize what particularly a discipline committed to the mentally ill and who had struggled with their advocacy for the mentally ill in their stigmatized and oft neglected states in hospital, what these medicines brought to us.

We had much, much success in helping very ill people, and continue to have considerable success.

I also want to remind you that many of those achievements in therapies were discovered by accident.  Lithium was discovered by accident.  The early antidepressants, still powerful tricyclic antidepressants were discovered by accident, and yet no one—Charles needs no reminding of this, but the rest of you have perhaps never worked in hospitals or with patients before these discoveries—really want to know what wonderful things they were.

But to some extent what you're speaking about here is that psychiatry has become a little bit of the victim of its own successes in these areas, and I think the public needs to talk about that because to some extent psychiatry and particularly organized psychiatry has become stuck in these conflicts.

Two dangers have turned up.  The one was that because we have this symptom-based diagnosis that is being followed with medications, we tend to ignore the individual to chase a symptoms.  Depression, for example, is a symptom.  It's not really a disease.  It's a symptom sometimes from a disease, sometimes from other kinds of things, and if we just chase it with a pill, then the patient now will be ignored and lost in his individual case.

And then, of course, there is this extension of the medications beyond their indications, as you mentioned, particularly things like Ritalin.  These successes have trapped psychiatrists in a couple of different ways.  We've become something of a hostage to the pharmaceutical industry in a couple of interesting ways.   I mean, you can't watch the ball games anymore without hearing about how if you're a little shy you ought to try Paxil.

This advertising for prescription drugs on our television, that has certainly changed my life as I have people coming in no longer asking so much for help as requesting from the waiter that I deliver a certain cocktail.

And, by the way, we've had some scandals, not so much scandals, but difficulties as we've seen scientific papers being published by distinguished psychiatrists who only later reveal, as was in the recent Nature, that they were receiving hundreds of thousands of dollars from the company of the drug that they were supporting there.

So we're a little trapped in these matters, and then finally, I think, many people in  America are concerned about the excessive use of certain psychopharmacological agents that we speak about here.  You've heard me say before that we should emphasize a new motto for America:  more recess, less Ritalin.

And ultimately what we are saying there is that the youngsters, particularly young boys who are vigorous and whose attention is only developing, they can be certainly held in their seats by Ritalin longer than they should, and in that way—longer than they would ordinarily, let's say—and they in that way are cheated somewhat of their boyhood and the like.

It's interesting that neuropsychology now can really start studying the attention span and how it expands with growth and development, and that interesting scientific discovery and work in neuropsychology has as yet, as far as I know, not influenced at all the pedagogical systems of our country.

Ritalin has come in long before real science has come in to talk about where we might go.  So I think, just to finish off—I'm going too long, I appreciate—but I just want to say how important this publication is and how it will, I think, help spur the public discussion on these important matters about what we mean by trying to treat people and how going beyond therapy could ultimately distort the pursuit of happiness.

Thank you.


DR. MAY:  The book as you summarized it, Leon, explores the ways in which biotechnology may both serve medical needs, but also edge us out beyond therapy in the service of a series of very powerful human aspirations.

However, as you closed your remarks, you notice that it doesn't attempt to solve dilemmas or directly to influence the decisions and policies of practitioners, administrators, governors, judges, or legislators.  It cultivates the soil out of which some of these things may emerge, but it's dealing directly with the cultural soil rather than particular discrete policies.

As I see it, this book aspires to contribute not directly to public policy, but to public culture.  It is, frankly, a ruminative piece.  Its goal is educational rather than political.  Its contribution to politics will be at best indirect rather than direct.

It should supply resources for continuing deliberation, whatever the fate of particular pieces of legislation before Congress or controversy in the courts.

Now, I can well imagine here a turnoff, no hard news, no cues as to where powerful people will come down on this or that particular prohibition, regulation, or funding decision.  So I would like to offer a plea on behalf of a book that attempts to broaden and deepen public culture, the sensibilities of a people.

As I see it, such a book at its best can help compensate for the tragic limitations of politics.  I have a very high regard for politics.  I take it to be the uncommonly difficult art of pursuing the common good.

But politicians, like other leaders and administrators geared to action, find it difficult even when they have a very spacious sense of the common good, not to simplify and distort in the course of mobilizing people to act.

Even with the best of intentions, language, ethical reflection pointing towards programs and policies inevitably sloganizes.  It recoils in advertisers' horror from the full complexity of experiences.  It abstracts, and although its abstractions can clarify portions of the total consciousness of the people and help organize the government for action, they also distort, neglect, and marginalize other interests and ranges of experience and conviction.

Politics traffics only in the possible and the doable, not the altogether.  Its slogans inevitably denature reality.  They captivate some followers, but disconnect from other citizens.

Now, the almost inevitable distortions and sloganizing of politics or the organization of our common life led the philosopher R.G. Collingwood to argue that a society needs its artists as well as its politicians.  Through the exploration of image, metaphor and symbol, artists retrieve and freshen language and perception and, thus, enrich and clarify the public consciousness that political slogans leach and muddy.

In freshening language and consciousness, they help us recover community in its entirety which politicians risk sacrificing for the sake of immediate action.

Well, this book is hardly written by artists.  Nevertheless, this book seeks to freshen bioethics, to broaden sensibilities beyond the narrowing urgencies of legislative and court dockets.  It attempts to take some soundings on the human condition.  It seeks to contribute thereby to a public culture upon which the resiliency of our common life and our politics depends.

I hope it has a long life both on and off the shelf.

CHAIRMAN KASS:  Thank you very much.

Gil Meilaender and then Mike Gazzaniga and the Rebecca.

PROF. MEILAENDER:  I has already been noted by several people that this is in some respects an unusual document for a body like this to produce, unusual because it makes no recommendations; unusual also, I think, because it is actually constituted by a rather long, sustained, sometimes difficult philosophical argument.

And I want to say just a few words about what it seems to me the report can do and what it cannot do.

At several moments along the way in the drafting and redrafting of this report, I have thought that rather than beyond therapy it might better be titled toward perfection for the report is in some considerable measure about what it means to be the sort of beings we are with the limits inherent in our humanity, but also with limitless desires to surpass those limits in various ways.

And surpassing them is not always or necessarily a bad thing, as I recall every time I get novocaine at the dentists and marvel that people ever got along without it.  We are very fortunate to live in a age so marked by medical advance.

But we still have to think about whether there are sadnesses that it is good to experience in life, whether the decline of our bodies is to be avoided as much as we can, and whether control and mastery of the next generation is always a good thing. 

We can become inhuman in either of two ways:  by acting in ways that seem less than human or by striving to be what we might call more than human.

In our report on cloning and human dignity, this Council has paid at least some attention, even if inadequately, to the possibility that we might act in ways less than human, for example, in our treatment of the weakest and most vulnerable of human beings.

In this report we focus rather on the temptation to be more than human and on the difficulties, the really genuine difficulties of deciding when the desire to overcome the current limits of our humanity is enriching and admirable and when that desire becomes a dangerous temptation.

We offer no policy recommendations, in part, because it's a genuine difficulty; in part, because we are inviting our fellow citizens to think along with us and puzzle with us over what are some very puzzling matters of great importance for our future.

But we also offer no recommendations because at least in part the problem we are exploring, the limitless desire to be more than human, is not the sort of problem one solves with policy recommendations or even, alas, with philosophical reflection.  It goes deeper than that, a lot deeper, and will never be solved simply by clear thinking.

The solution is, in fact, beyond philosophy.  Hence, we offer not solutions to the problem of limitless desire, but what we are able, an invitation to think about what it really means to be human, and in so doing we recognize our own limits.

Thank you.

CHAIRMAN KASS:  This is terrific.  Who's next?  It's Mike Gazzaniga and then Rebecca.  Please, Mike.

DR. GAZZANIGA:  It's always dangerous to follow members of the Council, but I have a couple of observations, one of which is that I'm new to this ethics area, and I've noticed two things about it.  One is that it appeals to 17 year olds and 60 year old people.


DR. GAZZANIGA:  And there's this gap in between that we're trying to fill, and I think the book goes a long way to interesting the people who are otherwise too busy to worry about the consequence of their actions.  So I commend you, Leon, and the staff and all of us, I guess, for working on this.

I think it is important to put the caveat in that you have put in, and I know the laboratory scientists feel that this is not a scientific document.  As you have said many times, it is a document that discusses, I think, maybe many scientific issues, many scientific data, but not all scientific data, and as we had many experts here testifying about possible implications of a piece of work, we also didn't have everybody testifying here.

And so many of the issues raised could be discussed in documents of this length in and of themselves, and I think  we should be alert to that so that when people do get in and start to consider the ethical issues here, they know there's a lot of work to do because they have to continue to dig out the real substance of each claim.

And let me just close with the fact that I think all laboratory scientists are always worried about predicting the future because it never seems to work that way.  We all remember Thomas Watson's remark on computers that he thought he would be lucky if he sold four of them.

So with that caveat, I think there's a lot of good reading here.

CHAIRMAN KASS:  Yeah.  Thank you.

Let me just interrupt the queue for a moment to underline what Mike has said.  I mean, this is a document of ethical reflection in which the scientific points of departure are small, not thoroughly explored.  One of the possibilities for this Council in the future—indeed, it was in our minds when we laid this out to present this as one package—is that there might be one or another of these topics of sufficient interest and urgency that we could go into it and go into it at much greater depth and do much more on the science and do much more in the complexity of the ethical questions, and to satisfy Jim Wilson before he complains, even to think through how social science research might actually distinguish between speculations and facts.

Let's see.  I have Rebecca.  I have Rebecca.  We'll just go down the row.  Rebecca, please.

PROF. DRESSER:  Well, I wanted to say what a powerful and thought provoking document I think this is.  I think it's beautifully written.  It's often moving, and at times it's even poetic.

It does, as people have said offer reflections, not policy recommendations, and it takes a different approach to public bioethics.  Instead of a pared down account presenting the least controversial analysis, it's a detailed and relatively elaborate exploration of ideas bearing on a difficult set of issues.

Sound bites are absent from this document.  It is instead dense, full of insights about complicated questions.  Although it is not an easy read, it's well worth the effort, and I guarantee it will make readers think more about matters they thought they understood.

Besides serving as a valuable resource for scholars, teachers, and students interested in bioethics problems, "Beyond Therapy" should be helpful, I think, to individuals and clinicians who are trying to be thoughtful about the interventions the report discusses.

As individuals, we have to decide whether and, if so, under what circumstances we ought to seek the potential benefits offered by these interventions.  In this culture that so values autonomy, we should seek to make truly autonomous choices about whether an intervention is the best way to address particular problems in our lives.

Many of these interventions will be heavily promoted through advertising, which we can expect will exaggerate the potential benefits and downplay risks and failure rates.  We should demand accurate information on safety and success rates, and we should also try to understand the broader implications of our individual choices.

For example, what are the potential effects on biomedical research of heavy investments in measures to extend life and enhance characteristics beyond what's average for our species?

Should the skills of our scientists and our limited research resources be used to develop these areas when children and young adults remain vulnerable to many life-threatening diseases?

Clinicians will play a pivotal role in determining how available these interventions are, and we trust physicians and other health care professionals to define and set standards for their work.

We also subsidize the training and infrastructure that enables them to practice their professions.  In turn, I think that clinicians assume some responsibility to use their skills and resources to meet the legitimate health needs of society.  Clinicians ought to consider whether providing an intervention is an appropriate use of their talents and skills in light of the many urgent health needs commanding their attention.

So the temptations to go beyond therapy are and will be strong.  I think this report gives us an opportunity to reflect on and possibly to resist at least some of those temptations.


CHAIRMAN KASS:  Robby, Robby George.

PROF. GEORGE:  I cannot claim to have anything approaching Jim Wilson's experience on governmental commissions and agencies, but this is the second one on which I have served, and even apart from my own service on such commissions, I've had occasion to read many governmental reports, reports of agencies, and I must say that I have never seen a report of which the agency could be prouder.

Some reports are informative, but just informative, not especially analytical.  Some achieve the goal not only of being informative, but also of being analytical.  This one goes a step beyond.  It's not only informative, not only analytical, but also reflective, deeply reflective in a way that I think merits Bill May's fine characterization of the report as ruminative.

I believe that the key move which made this possible is precisely the one that Leon put his finger on, the decision not to organize as people might have expected around the specific technologies that we either have before us or in view not very far down the line, but rather to focus on questions of character and desire and aspiration, and the net result of that is a document which I think genuinely promises to structure and elevate public discussion and debate. 

It has already been noted.  It will be noted by the people who first examined what a council like ours does, that there are not political, there are not legislative recommendations or at least not direct legislative recommendations.  There aren't even a lot of norms announced.

That will cause some people who are simply interested in short-term politics to ignore the report, and that's a shame.  But I hope that many others, including if not members of Congress themselves, although I would hope they would, but congressional staff people, people in the Executive Branch; I hope that such people will read this report because they will be deeply informed by it in their own reflections on questions that they'll be facing soon enough.  I think they will be significantly enhanced.

Alfonso put his finger on something that I had noticed, but only dimly and which I'm very glad that he brought out in his remarks this morning.  There really is a powerful suggestion in this report, even though it doesn't make specific legislative recommendations; there's a powerful and important suggestion, and its' a suggestion about how we ought to think about the promise and peril of biotechnology, the promise and peril of going beyond therapy.

Alfonso rightly noted that it's a way of thinking that would be appropriate not simply to biotechnology, but to technology generally, but of course, we're here concerned with biotechnology and its promise and peril, and that is to think about these issues in light of an understanding of human well-being and flourishing.

I think if we as a culture do that, we are not guaranteed the right decision every time, but we are more likely to hit the mark than if we approach the matter in a piecemeal or in a utilitarian way.  So I hope that this powerful suggestion will be taken up.

Now, it's true that to try to think about the promise and peril of biotechnology in light of a conception of human flourishing does not settle the issue of what conception among the competing conceptions of human flourishing is the right one.

We on this Council and we in this culture would have disagreements, do have disagreements about the components of integral human flourishing, what counts as being an aspect of human well-being and flourishing.

And beyond that, of course, even to the extent that we can agree on the components of our own full living, our own flourishing, we would have disagreements about the implications of the integral directiveness of those components, of the norms by which we would live in order to honor human well-being in its variegated dimensions.

And the report doesn't solve any of those problems, doesn't pretend to solve any of those problems, but it invites us to think about those problems and structure our discussion of the promise and peril of biotechnology in light of those.

It also does more than merely hint at the concern that we ought to have for unintended social consequences.  Again, I'll follow Alfonso on an important point.  There are activities that seem harmless or even useful or even valuable when practiced for specific reasons on a small scale which, when they become widely disseminated throughout a society and become a norm or nearly a norm, can have unintended negative social consequences, even social consequences which manifest themselves in a falling away in the culture of the culture, of people in the culture, who constitute the culture, a falling away from cherished ideals, including the ideals that which taken together I think we would characterize as human dignity.

My own hope is that the report will help to reinforce or remind us as Americans of our commitment to treating the human being throughout his or her life as a subject, as a person possessing an intrinsic and inestimable worth and dignity and not as an object of manipulation whose worth is dependent or affected in any way by his or her strength or beauty or talent or intelligence.

Now, nobody wants to do away with that commitment.  No one would vote to do away with such a commitment, but of course, the worry is that in small steps, by practices that seem innocuous, harmless, even valuable, it may erode. 

I completely agree with everything the report says about the promise of biotechnology, about the value of certain therapies or even matters beyond therapy which are now on the horizon.  We certainly shouldn't be Luddites about these things.

But we should be aware and conscious of our own history and of unintended bad consequences of things that appear to be very promising when looked at abstractly and in advance.

So I more than welcome this report, Leon.  I think it's a great achievement of the Council, and I congratulate you and my colleagues and the staff for producing such an outstanding piece of work.

CHAIRMAN KASS:  Thank you.


PROF. SANDEL:  I'd like to begin by congratulating the Chairman for embarking on this project, which might seem speculative, as merely philosophical speculation, but I think it does, as many people have said, enlarge the enterprise of bioethics, which traditionally had been concerned with weighing costs and benefits and with parsing consent, and this project enlarges bioethics by connecting it to big questions about the status of nature, the relation between human beings and nature, and the limits, if there are limits, to the project of mastery and control.

I would just point to two questions that the report raises, questions that are important to discuss in American public life.  One of them is the real puzzle, which is what is wrong with trying to use whatever means we can not only to cure disease, but to improve ourselves and our children.

There are lots of ways we try to improve ourselves, and especially our children and especially today, from hauling them to music lessons and soccer practices and SAT prep. courses to trying to in one case last year some guy manipulating a stock market valuation in order to please his boss who was trying to get his young kids into a prestigious preschool in Manhattan.

So there is a kind of drive to and a frenzy even to improve ourselves and the prospects of our children.  Why not use biotech if these other methods are okay?

And I think this report frames that question very powerfully, and lying in the background is an historic experience with improvement with genetic improvement, and that's eugenics.  And eugenics is a sordid part of the American past and has had a lot of attention lately when governors of a number of states have apologized for eugenic policies of forced sterilization just in the last two years.

And on the face of it, this is very different.  Biotech enhancement is different from eugenics because it's not coerced.  It doesn't involve forced sterilization, but it's similar in the sense that it aims at improving our genetic make-up, and the real question this report poses is:  well, what was wrong with eugenics in the first place?  Is it simply that it was forced, that it was coerced?

And now we can pose that question in the face of these technologies.  Suppose you remove the coercive aspect of eugenics and you have instead voluntary, free market eugenics, free market, consumer-driven eugenics.  That's the question of enhancement.

Is there an objection to it or was eugenics only wrong historically because it was forced and coercive?

So that's one interesting ethical puzzle that this report helps us think about, and it's one that seems to me that we as a society should think about.

And the second question that this report raises has to do—well, I think it prompts us to reflect on practices that are low tech, not high tech practices that are already widespread.  The aspiration to improve your children against the background of a meritocratic society where the pressures are ratcheted up in the last couple of decades in an unprecedented way.

The intensely competitive society that we inhabit is the background for the consumer driven eugenic project that biotech enhancement reflects, but there's a lot of lot tech hyperparenting that many of us find ourselves in the grip of, and what that suggests or the question that it raises is that the subjects this report deals with we often associate them with new biotechnological advances, as if technology is the occasion for this predicament.

And so we tend to think that the problem is set, the problem of genetic engineering and enhancement is set, by great, new biomedical advances that had inadvertent side effects that we need not think about, as if these developments came to cure disease, but stayed to tempt us with the prospect of genetic enhancement and engineering.

But that may be a mistaken way of looking at it.  It may be the other way around.  It may be that the intensely competitive society we inhabit with the drive for mastery and control and improvement and perfection that it fosters summoned these technologies into being, and so it may be that we need to attend, and this report can give us an occasion to reflect, maybe that we need to reflect on the drive for mastery and control and improvement and perfection in the public culture that we've created that may be the background and the occasion for these dilemmas rather than the technology as such.

CHAIRMAN KASS:  Thank you.

Bill, did you want to comment?  And then I think we should leave some time to open the floor for questions from the press before we break.

DR. HURLBUT:  Just a few added thoughts from a personal perspective.  I found this project very, very difficult, and I think the reason it was so difficult was both intrinsic to the subject and also because it seems like such an important subject.  The consequences of what we are talking about here are so significant.  It raises such fundamental questions about human nature and our place within nature, fundamental issues of meaning and purpose in human life, and this is not just at the personal level, but at the social level and even what one might call the species level.

These are really species issues.  Many of the issues we discussed here have implications that go beyond the present generation.  So they are truly issues for the whole human family, and one dimension of this project that I found very, very hopeful was that we extended our discussion beyond the borders of scientific and narrow bioethical reflection into realms that required us to think and converse with philosophers, theologians, and also the broader testimony of life as lived, the insight that the common person has living in the profound reality of their own personal existence.

I know I for one spent quite a bit of time talking with individuals from diverse backgrounds and perspectives to inquire as to their feelings about some of these potential transformations of human life.

Another difficulty of this subject that made it very broad for me was the fact that we're not talking about a transformation versus a static improvement or temporary reality, but something that is dynamic, that any change in one phase of life will affect the larger process of life, the overarching contour such that at least our reflection on what's going on here has to bear in mind the possibility that any one enhancement will affect all of the stages and phases of human life, disrupting its potential integrity and sense of personal identity and sense of continuity.

And so in the process of thinking through this subject, it drew me back as one trained in biology and medicine to think about the fact that interventions at such a basic level, a basic biological level require us to think about where our fundamental capacities came from in the first place.  What are our origins?  What can that tell us about what we might beneficially do to alter ourselves?

And this, of course, brings us back to some reflection on our evolutionary origins, and when one looks back, one can see that we have been both framed and constrained by evolutionary process, a hard fought battle of balance where desire is actually an agency that beckons us forward toward specific human goods, but within the context of constraint.

Michael spoke about the power of coercion.  It strikes me that when we go beyond those natural constraints, we open ourselves to a subtle sort of what you might call soft seduction of desire.  In a natural environment desires are directions that send us off in a hopeful direction, but they are not destinations in and of themselves.  When unconstrained by the limitations of nature, we have to be extremely careful how we use our technology when it's propelled by desire.

So the pursuit of happiness needs to be framed within some perspective of our natural origins.

It's equally true that we're a species that has adapted for adaptability, a kind of open indeterminacy, and that it's our very nature to, through art and technology, produce creative extensions.

And I think one of the problems in our current thinking is that we have just come out of century in which there have been absolutely dramatic transformations of human life through biomedical technology.  One can think of extensions of life span, basic interventions that break heretofore connected goods, such as sexual union and procreation; transformations of our surface through cosmetic interventions; and increasing transformations of human potential for performance.

I think the momentum of change is also causing a momentum of change of self-understanding of our whole relationship with nature, one another, and within ourselves, our aspirations and expectations.  But such a metaphorical extension of the notions of what happened in the 20th Century may be a danger in itself.  It may be true that cosmetic transformation is somehow intrinsically different than the kind of transformations that are now on the horizon.

It's one thing to manipulate the natural surfaces given for self-expression.  It may be quite another thing to go to the very core of the fragile frame of human freedom.

Just to mention a couple of dangers, there's certainly a danger of individual trivialization, self-degradation.  There's also the danger of increased confusion and conflict just simply by producing too much choice; that it is too far beyond the reach of our normal, intuitive relationship with how we are to manage our lives.

And of course, very deeply there's the danger of unbridled competition that's corrosive to community.  I think we shouldn't underestimate the dangers of intervening in our own biology.  In this season of the World Series, we might remember that old saying that Mother Nature always bats in the bottom of the ninth.

We've chosen in this report to talk about some very dramatic technologies, some of which I think will in and of themselves probably not be realizable.  Yet we use these as heuristic examples that are able to draw out deep lessons.  Some people will criticize us for speaking of things that are unrealistic, but they are very realistic in the sense that they are on the trajectory.  They help us to see and frame the issues.

Just one final thought, and that is that I for one think we're heading into very dangerous territory with our uses of enhancement technologies.  I think we shouldn't underestimate that.  In this regard, I think our document is a tremendous contribution to an essential dialogue.

In thinking about this matter, which I have already thought about for decades, but my thinking in this group process was enriched and deepened, and in the process I think I came more deeply to appreciate with a certain respect and reverence the natural frame of human existence.  It seems to me to truly be a privileged path to a deeper and more coherent life than the one we might micromanage into existence.

We have wonderful possibilities ahead with our advancing technology, but it's quite evident when one thinks about this arena that we're going to need the continuing ethical reflection that we've done with this document.  It's going to need to be an ethical reflection of the whole human family together as community, and it's only through that that we will open up a wonderful possibility of advancing biomedical science while at the same time preserving human dignity.

CHAIRMAN KASS:  Thank you very much.

Let me read very quickly and I don't want to neglect comments both from our colleagues, Mary Ann Glendon and Frank.  They are very brief, and then we'll have questions from the floor if there are any.

This is from Mary Ann.

"I regret that I cannot be present when the Council presents 'Beyond Therapy' at the October meeting.  I am sure I am not alone in believing that this report could have immediate and far-reaching effects by drawing public attention to some of the most neglected issues in bioethics.  My hope is that it will stimulate conversations in many fora, radio and television discussions, newspaper columns, colleges and universities, and study groups of all kinds.

"After months of hearing testimony from the best experts in the areas covered, we have provided a basis for a well informed, serious reflection on what it means for Americans individually and for American society to cross the admittedly hazy frontiers that separate ordinary medical uses of biotechnology from the unknown territory that lies beyond.

"The report goes a long way toward helping us all think clearly about the hazards as well as the promise of the new technologies and about the difference between technical advances and authentic human progress.  Sincere congratulations to you and the staff for putting this all together so eloquently and effectively."

And from Frank Fukuyama, "I apologize for missing this month's Council meeting due to a trip out of the country.  I am very pleased by the release of the Council's report 'Beyond Therapy.'  I have reviewed the various drafts of this document, and while there are individual areas that I might not completely agree with the text, I think it is a document of utmost importance.

"I believe that, to a much further degree than issues like cloning and stem cells over which we have spent a great deal of time, the issues raised in 'Beyond Therapy' get at the heart of what is most troubling about biotechnology both now and in the future.

"Human nature and the natural human condition provide important normative guidelines for everything from human rights to relations between friends and within families.  The ability of modern biomedicine to alter this condition, while of course not entirely new, will have enormous effects on our lives that we have not even begun to comprehend.

"Over the past two generations we have seen the growth of an enormous worldwide environmental movement dedicated to preserving as much of our natural environment as possible because we human beings feel deeply rooted in nature and incomplete as humans in its absence.  We should be all the more concerned with the husbanding of our human natures to which we should attribute, even if unconsciously, an even higher normative value.

"This report makes an excellent first stab at thinking through these questions.  It is unique in the history of prior bioethics panels and will make a real contribution to putting this issue on the map.  It points out that many aspects of what I have labeled a post-human future have already arrived in the form of personality altering drugs, and that there will be much more to come long before anything like germ line engineering becomes a possibility.

"The report also rightly argues at this point that these are issues for reflection and debate rather  than regulation and public policy.

"Staff should be congratulated for pulling this together as they did, and I am delighted that Council is sending a report forward at this time."

Thank you all for your very thoughtful, interesting, and generous comments.  We have a few minutes for questions from any members of the press or the media who would like to pose matters for discussion.

(No response.)

CHAIRMAN KASS:  There being no votes, there are no questions.

Let me make one final comment.  We'll take a break early and reconvene.  We are all mindful, I think, of the possible utility of this volume in various kinds of educational settings.  We have the leisure and the manpower, I think, to visit various college campuses where you people are in the course of the next six months to have some conversations about if you take one chapter or one theme.  I think there are members of the staff who would be willing to travel.

And if any of you would like to try to organize some things in connection with your own teaching or your own activities, I think we'd be delighted to cooperate and try to begin the process of letting the conversation develop with this as a starting point.

This is not newsworthy in any ordinary sense, the kind of timely sense.  If it's going to have an effect, it's going to be slow, and it's going to depend upon conversation.  You are not only the contributors to the volume, but seeds in your own places for carrying this conversation forward, and the Council and the staff stand ready to help you.

We'll adjourn.  We'll reconvene at a quarter of 11 to talk about chimeras.

(Whereupon, the foregoing matter went off the record at 10:23 a.m. and went back on the record at 10:52 a.m.)

  - The President's Council on Bioethics -  
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