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Thursday, February 13, 2002

Welcome and Opening Remarks

CHAIRMAN KASS: Could we get started, please? I would like to call on Dean Clancy to open the second meeting of the President's Council on Bioethics.

MR. CLANCY: Good morning and welcome back to Washington. You are good to go for this meeting. It is all legal.

One quick announcement. Members and staff are required to receive an ethics training at least once a year. An ethics attorney from the Administration will be available at 5:00 o'clock to discuss the ethics rule. Until then, please bear in mind that as federal employees you may not take part in a discussion of a particular matter that is likely to have a direct and predictable effect on your own financial interests or the financial interests of your immediate family or employer. When it doubt, refrain from weighing in the particular matter under discussion.

CHAIRMAN KASS: Thank you. I would first like to welcome Alfonso Gómez-Lobo , Professor of Metaphysics and Moral Philosophy at Georgetown.

It's nice to have you with us, Alfonso, and glad to see you looking so well.

DR. GÓMEZ-LOBO: Thank you.

CHAIRMAN KASS: I would also like to welcome our special guest, Dr. Irv Weissman, the Karel and Avice Beekhuis Professor of Cancer Biology, and Professor of Pathology and Developmental Biology at Stanford, and the Chair of the National Academies Panel on Scientific and Medical Aspects of Human Cloning, the topic of our discussion later in the morning.

I would like to announce to all members that our web site, a rather spartan one for the time being, is now functional. You can find us at www.bioethics.gov. You will find the transcripts, unedited, posted there, as well as Working Papers and other additional matters.

Lunch for council members will be in the Club Room where the continental breakfast was. The evening for members is free.

If you have logistical questions, please see Emily Jones, who is, I think, standing. There is Emily in the back.

Would you raise your hand?

And people with media questions should see Diane Gianelli, our communications director, in the back.

As Dean said, we will have a lawyer with us at 5:00 this afternoon to deal with any questions we might have.

You have all received the announcement of the subsequent meeting dates. Please hold all of them for the rest of the calendar year. We will not use them all. There will be no March meeting. We are missing four members and, quite frankly, it is something of a rush to get these things set up. We would have to have the next meeting planned by two weeks. So between this meeting and the meeting on April 25-26 will be the time to collect comments from all of you and for our staff to begin to prepare drafts of documents for discussion at that time.

I want to begin with some remarks which will then make a transition into the topic of the first session.

I want to remind us of the charge that was given to this Council: "To advise the President on bioethical issues that may emerge as a consequence of advances in biomedical science and technology."

To offer sensible advice for action, we must first seek clarity in thought. We must examine carefully and critically the specific ethical and policy questions related to biomedical advances. Yet this modest way of describing the work of public bioethics belies the weightiness of our subject. Many of the ethical and policy challenges we shall increasingly face arise because of new and foreseeable powers to intervene in the human body and mind in unprecedented ways and, in some cases, for indeterminate ends.

Though these powers are being acquired as part of the project to cure disease and relieve suffering, their acquisition often raises serious moral questions and their possible uses go beyond the goals of therapy for which they are first sought. Everyone understands, even if only dimly, that how we use these powers could make a very big difference for what it means to be a human being, for us and especially for future generations.

Precisely for this reason, the ethical issues we face necessarily go beyond the utilitarian concerns of ordinary technology assessment, which confines itself largely to questions of "Will it work? Is it safe? And how much will it cost?" They even go beyond the traditional questions of medical ethics or even the ethics governing research on human subjects, with its reliance on informed consent or its application of the abstract principles of "beneficence, respect for autonomy and justice."

To develop a bioethics that does justice to the subject, we need to develop a view that is broader and deeper. We must, to begin with, take pains to locate the new biomedical developments, both with their promise and their peril, within the larger context of human life. We must not merely reactively respond to the potential consequences of this or that particular technological innovation. We must rather prospectively try to articulate the human goods, activities, relationships, and institutions that we wish to defend in advance. Developing the ideas, questions and approaches for a "truly human" bioethics is one of the prime goals of this Council, one that we shall pursue both thematically and, I hope, by example, as we tackle our particular topics.

At our first meeting, we spent roughly half our time explicitly reflecting on how we should conceive and approach our subject. Using Hawthorne's story, "The Birthmark", we considered the meaning of a one-sided pursuit of the otherwise noble struggle against what Bill May called "the un-elected marks that go with our birth," which include — whether we know it or not — disease, decay, and death itself.

And we struggled with the question of the extent to which this aspiration is or is not part of the aspiration of modern science and the culture that celebrates it.

With the help of Gil Meilaender's paper, we took up some of the essential themes of a bioethics true to the character of human life: Questions about freedom and its limits; questions about the relationships between the generations, the nexus of connection that we owe to the fact that as finite beings, we beget and we belong in families; questions about the project to relieve suffering and its moral standing among other human goods, as well as questions about what means we may morally use to attain this worthy goal.

In the discussions that followed, people spoke about human equality and human dignity, though with little specification given, as well as about the dangers of trying to subdue the mysteries of life or to seek to exchange our position in the world as "imperfect recipients of a gift" for one of "flawed manufacturers, controllers and designers." We have much more to do on these matters and we shall in future meetings schedule time to consider them explicitly.

For this meeting, however, we shall spend all our time on human cloning, our first short-term project. It is my hope — nay, my expectation — that the way that we shall proceed with our exploration of human cloning will show signs of our striving for the richest possible treatment. This means concretely thinking about cloning in the context primarily of human procreation: What it means to have a child; the meaning of "origins" for one's identity and sense of self; what it means to regard the child as a project or a product rather than as a gift given; the difference between "begetting and making"; the balance between what Bill May called "accepting love" and "transforming love" of children; the relation between the freedom to have a child and the great limitation of freedom implicit in the duty to protect, nurture and educate the child; and other comparable matters.

It also means thinking about cloning in the context of the progress of biomedical science, as well as the growing technological powers to assist and control human reproduction, and to influence human genetic endowments.

These considerations reminds us that we are taking up the cloning question not only because it is timely and a matter of intense public discussion to which we have been asked to contribute. Indeed, we can contribute most fruitfully to that discussion especially as what we say keeps these larger contexts in mind. We are mindful that cloning intends not only to produce a child but a child of a particular and approved genetic endowment; in this sense cloning is discontinuous with IVF and stands as a possible forerunner of future efforts at genetic design and even eugenics.

We recognize that the argument about what to do about cloning is, in fact, also about who should bear the burden of persuasion or of proof regarding the introduction of such radical new technological alterations of human life. It also makes explicit the complicated relation between science and society, as freedom of inquiry, innovation, and medical research may be threatened or limited, rightly or wrongly, by public strictures. A broad view makes clear that there is more at stake in the cloning discussion than cloning itself.

The logic of our meeting begins with questions of terminology, moves to the scientific and medical aspects, continues with the ethical issues connected to reproductive and research users of cloning, and concludes with a discussion of the policy issues tomorrow.

Turning now to the theme of this first session, I want to make just a couple more remarks. The first task of any serious and thoughtful inquiry is a self-conscious consideration of how the topic should be described. Terminology matters. The answers one gets are no better than the questions one poses and the questions are shaped by what one chooses to call the matter in question.

Human speech is necessarily precarious and contestable. The word is not the thing. Always there are dangers of mischief and misunderstanding. There is risk of imprecision, euphemism and the ever present temptation to win a moral argument by choosing focus group tested soothing usages.

In our area of bioethics there is an additional and crucial danger of terminological distortion. What are fundamentally human activities are frequently described in merely technical terms and the choices presented are described medically and technologically rather than humanly and ethically. This is especially likely to happen where bioethics proceeds reactively in the face of a new technology, rather than prospectively from the vantage point of human activities involved.

For example, in considering the ethical issues of assisted reproduction, it will be one thing to frame the questions in human terms of having and bearing children and quite another thing to frame it in the scientized (sic) and medicalized (sic) language of reproductive technique and medical risk alone.

As it happens, there is a great deal of confusion about the terms used in discussing human cloning. There is honest disagreement about what names should be used, and there are also attempts to select and use terms in order to gain advantage for a particular moral or policy position. It is terribly important to try to be accurate and fair in the matter of language. Efforts to win the moral argument by Orwellian use of speech must be resisted. This is not just a matter of semantics; it is a matter of trying hard to call things by their right names; of trying to fit speech to fact as best one can.

We should not only stipulate the meanings we intend by our use of terms — that we must do — but we should also try to choose terms that most accurately convey the descriptive reality of the matter at hand. If this is well done, the moral argument can then proceed on the merits without distortion by linguistic sloppiness or chicanery.

It is for this reason and for the reason that this question came up so frequently in our discussions last time that we begin our meeting this time with a discussion of terminology. The basis for that discussion is Working Paper 5, a rather detailed analysis of the difference between the what, the why and the how of these activities. We have also had e-mail comments from Gil Meilaender that are included in your briefing book and a late submission came yesterday from Stephen Carter, which is before you in the packet.

I should say, by the way, that you have other materials before you. Some of them provided by the National Academies of Science, and they will be relevant for Dr. Weissman's presentation.

The goal, I think, for this session is simply to discuss the terminologic question as that has been prompted by the Working Paper. The end of the Working Paper has — offers a certain conclusion as to what it seems proper to mean by human cloning, distinguishing the what, the how and the why. Refer to page 6 of the Working Paper. It then goes on to describe reproductive and research therapeutic cloning in terms of that discussion. And it concludes with a question posed for us: Having done this linguistic analysis, so what? I mean, do we simply make clear how we are using these terms, appending to it this analysis or some corrected version of it so that everybody at least knows what we mean or shall we creatively try to find some other way of speaking about these matters that might not fall prey to the difficulties inherent in any choice that we make?

But, first, I think we should discuss the questions raised by the Working Paper and whether that description is adequate, and then try to figure out what, if anything, we should do to — what terms we would like to adopt.

With that, I would open the meeting for discussion of the Working Papers and this topic.

Michael, please.


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