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Thursday, March 12, 2009

Session 1: National Ethics Commissions:
The View from Abroad

Marie-Hélenè Mouneyrat
Secretary General
Comité Consultatif National d'Ethique, France

Hugh Whittall
Director, Nuffield Council on Bioethics


CHAIRMAN PELLEGRINO: Good morning. Welcome to the Thirty-Sixth Meeting of the President's Council on Bioethics. The first act of every Council meeting is for me to recognize Dr. Daniel Davis to my left who is the Executive Director of the Council and the official government representative. He gives us legal, I suppose, credibility and credibility of other types as well, but particularly that one we have to say.

This morning we will begin the examination of the question we had started at a previous meeting of national ethics committees. This Council has been, most of it, in operation for almost eight years now and we thought it might be useful to examine our experience and to hear more about the experience of other commissions in other countries with the idea in mind perhaps of putting together a report with recommendations or at least an examination of the question.

Our first speaker — and I want to say for this part of the meeting and throughout — we do not provide lengthy introductions simply because we want to give the speaker enough time to cover the subject and to open it up to consideration by the Council, so I will only read the titles. You have those on the agenda.

Our first speaker is Marie-Hélenè Mouneyrat, Secretary General — and I dare not try to pronounce this, but I will try and stand to be corrected — Comité Consultatif National d'Ethique from France. She's been good enough to come across the waters to speak to us and enlighten us on how the commission question is addressed and how it operates in France.

Madame Mouneyrat?

SECRETARY GENERAL MOUNEYRAT: Thank you. First of all, I would like to thank you a lot, President Pellegrino and Dan Davis. Thank you for your so kind invitation which is for me both an honor and a real pleasure to be with you.

In recent decades, ethical concerns have become the preferred spiritual nourishment of our contemporary societies, and no longer only in the most advanced of them. They are gradually gaining ground in every sector of human activity.

Cosmetics must be ethical; ready-to-wear garments must be ethical. Foodstuffs must also be ethically acceptable. And the current crisis, which is changing the world as we know it, enhances this concept. The stock exchange itself will have to respond to ethical criteria.

So ethics are in the process of becoming a good investment and, in such a context, the ethics committee concept is very certainly one that is heavy with promise for the future.

In the area of the health and life sciences with which we are concerned today, however, such an institution has distinctive characteristics which are very specific to its field of expertise. New issues are looming in the original bioethics committee as are new challenges which we need to take on.

These issues are predominant in four areas. The first one is the relationship of ethics committees with the world of science; secondly, the relationship of ethics committees with politics; thirdly, the relationship of ethics committees with society; and finally, the relationship of ethics committees on an international scale.

The first ethics committees focused on health and life sciences. And when the President of the French Republic created the French National Consultative Ethics Committee in 1983 — and it was at this time the first in the world — he gave as his motive for doing so that "science moved faster than human society." So the first task for such a committee is therefore to prevail over this apparent antagonism between science and society.

When the French committee started to operate in 1983, the issues at stake were in the area of advances in medical-assisted reproduction with the birth of the first test-tube baby, which was the source of both fascination and unease. In those early days, the difficult problems confronting us already included the status of embryos, the discovery of the genome, and tests involving human beings, and another burning issue which at that time was looming large because of the connection with surrogate motherhood — that is using the human body for commercial purposes.

So the composition of ethics committees, which naturally includes scientists but also legal experts, philosophers, anthropologists, journalists, representatives of associations, et cetera, is a good reflection of the care taken to establish a bridge between scientific research and society.

A few words about the situation in France. In France, the committee's membership is defined by law. We have five personalities belonging to the main philosophical and spiritual currents. And presently we have a Catholic, a Protestant, a Jewish, a Muslim, and a laic [secular] person; then nineteen personalities chosen for their competence and interest in ethical issues; and finally, fifteen personalities from the research sector. These thirty-nine members are appointed for four years, renewable once.

The Committee's work is directed by its president, who is appointed by the French President, who is appointed by the President of the French Republic for a renewable two-years mandate. In this respect, bioethical reflection could be defined as an exploration, with all due modesty, of the relationship between scientific progress and social acceptability.

Now, this mission of the ethics committees, which goes further than just constructing a bridge between two areas of human endeavor and dispelling public misunderstanding of scientific progress is, I think, a primary and fundamental issue. To accomplish it, ethics committees must take up a certain number of challenges.

The first of these is linked to the intrinsically fluctuating character of scientific progress, which means that we must accept the precarious nature of ethical reflection. Nothing can ever be set for eternity, and the pronouncements of ethics committees must always be open to revision in the light of new scientific developments.

For instance, as regards medically assisted reproduction, it's clear that, if and when oocytes can be frozen without damage, the issues of what to do with superfluous embryos and about the embryo research, in general, would be placed in a very different light.

As regards the way in which reflection is conducted, there are some essential requirements. Ethical reflection must never be dogmatic. When the French committee was created at the beginning, its members wondered how they should go about constructing their opinions.

Two methods of work were open to them: either choose to start thinking in abstract terms in the hope of arriving at elemental principles, on which agreement can be found and which can be used as a guide for every subject to be considered; or else use the issues raised as the starting point in order to see whether the completed opinions could also yield commonly acceptable, fundamental principles.

The second of these methods was selected, and that was precisely due to the very singular nature of bioethical reflection. It so happens that this evolutionary mode of operation has, in France, remained central to reflection on the appropriateness of passing from ethics to law with, as an inevitable consequence, the establishment of connections between ethics and politics. This is a second point at issue for ethics committees.

In France, legislating on bioethics was not an immediately obvious way to proceed. Discussion on the subject in France was extremely sharp, in particular because it did not seem possible to immobilize scientific progress within what would seem at first sight to be necessarily rigid normative boundaries. Scientists were apprehensive and reluctant to accept such changes.

And French lawmakers launched a kind of legal revolution when they introduced the concept of a revisable law, choosing five years as the lapse of time before it would be reviewed and the implementation of its decisions assessed.

The societal choice is no longer much disputed, except that currently in France we are organizing the Estates General on Bioethics, which is a discussion to prepare a reexamination of the 2004 laws on bioethics, and this discussion also includes the question of whether it would be appropriate for the text of the law itself to set a time lapse.

In any event, the major consequence for ethics committees is that ethics and politics are no longer two separate domains. Relations between the ethics committee and the parliament, as well as between the ethics committee and government are inevitable. So the French National Ethics Committee is regularly consulted and associated with the work of the Parliamentary Bureau on Scientific and Technological Evaluation.

On the other side, the government — as we've seen very recently, the Prime Minister in the context of the Estates General on Bioethics — the government also frequently refers to the committee on the subject of draft laws submitted to Parliament for discussion.

As a result, the challenge to be met by ethics committees is to carry out this consultative mission in an advisory capacity while retaining their independence. This is a fundamental concern because I think that independence guarantees the credibility of the ethics committees.

So for that, French legislators provided CCNE, the French committee, with a number of essential safeguards for its independence. The first one is that the 2004 law gives to the French committee the status of independent authority, with a budget appropriation run by the prime minister, but with exemption from financial audit and only a posteriori accountability to the Cour des Comptes, which is the French supreme audit authority.

The second guarantee of independence, the CCNE's membership, as I said, is stipulated by law so that it is preserved from any arbitrary decision on the part of the executive, were it tempted to take control of the committee. The 2004 law also gives the French committee power of self-referral which is another fundamental safeguard of its independence.

However, prudence is still advisable since we have seen, for example, that a considerable delay on the part of the authorities in the membership renewal procedures could, de facto, paralyze the Committee and be viewed as an insidious attack on its independence. Finally, the Committee's latitude in the publication of its opinions on subjects of general interest through the medium of press conferences is certainly the major expression of its independence, insofar as this makes the Committee the principal actor of ethical reflection for the benefit of citizens.

I think that ethics committees must be the preferred instrument for the establishment of an unfettered and reasoned debate on bioethical issues by society, firstly, because the existence of this societal debate is an essential condition for society's willingness to accept normative rules. Moreover, this is one of the essentials of participative democracy. In this respect, the particularly sensitive role of an ethics committee in such a democracy on the borderline between representative and direct democracy becomes very clear.

And we have present in front an illustration of this in the context of the current Estates General on Bioethics. The French National Ethics Committee has a complex mission, together with other structures, to organize citizens' debate into a lot of conferences, so that when the time comes for legislators to review the laws, they can take account of society's aspirations.

But while this task of the ethics committees is therefore absolutely essential, it is also particularly delicate. And the difficulties arise both out of the subject itself and the nature of bioethical reflection. The subject is particularly complex and almost always requires a degree of scientific knowledge which all of our citizens do not necessarily possess. In subjects such as, for instance, genetics, nanosciences, environmental health and biodiversity, scientific expertise must be at a high level.

Secondly, the nature of bioethic reflection is another difficulty. As you know, bioethics is not an exact science which is why teaching bioethics raises so many issues. There is no such thing as "bioethical truth." Ethics are a search for enlightenment. And obviously incorporating a complex process of questioning into an already complex domain is far from easy.

In this connection, there is the matter of the way in which ethics committees work and express themselves. Should we do our utmost to arrive at a consensus or simply set out the arguments for divergent standpoints?

Quite clearly, a consensus will be difficult to come by in a pluralist and multidisciplinary assembly discussing sometimes extremely sensitive subjects. And the danger here is arriving at what can be described as a "soft" consensus. It may, of course, seem surprising that a gathering of forty people in France, whose convictions are so very different, can arrive at any form of common position.

But, in fact, there is never any need to erode anyone's sharper angles. The process consists more in revealing the strongly held point of reference at the core of each belief which surprisingly emerge as shared by all when human dignity is involved, and when there is no call for being answerable to some electorate or to the issuers of voting instructions.

I would say that in the French committee, all the members are present "intuit personae," but they are not strictly speaking representatives. It's only when there is freedom of speech for all that everyone can be heard.

But it happens that there is no way of arriving at a point of concurrence acceptable to everyone. Some members on such sensitive issues, for instance, the status of embryos, may be reluctant to commit themselves to an opinion. In that event, they are at liberty to set out their points of difference in a dissident opinion, which is published at the end of the Committee's opinion.

Another complicating factor for the social debate is that, of necessity, the media must be the vector for raising awareness in society. I could say, perhaps, that there is a fundamental opposition between ethical reflection and the needs of the media. The media — I don't know if it's especially in France — but I feel that the media inference revel in the sensational and stark black and white choices: that's yes or no, good or bad, true or false, et cetera.

And, clearly, bioethics issues and the opinions in the Committee cannot conform to such a pattern so that their mediatization — which is so essential to raising the awareness of society — their mediatization turn out to be extraordinarily difficult, unless a reductive presentation is considered acceptable.

CCNE French Committee has made and continues to make a very special effort aimed at the younger generations. Every year at its annual conference, youngsters are asked to participate. High school students are invited to present the fruit of their deliberations after working on various themes with their teaches in a para-disciplinary plenary approach. Their thoughts may bear on subjects as varied as organ transplantation, anonymity for gamete donors, euthanasia, end of life, et cetera. And after each of their presentations, there is a debate with the CCNE members and the public. And our committee attaches the greatest importance to these discussions with high school students as they are very close to an ideal of ethical reflection, which does not consist in the instillation of elitist knowledge, but more in "questioning the consequences of the decisions we take that will change the lives of those who survive us." [P. Le Coz]

For the younger members of our society to claim ownership of such problems shows a readiness to anticipate ethical issue rather than allow them to intrude on us and then try to deal with them a posteriori. In this respect, ethical reflection is a preferential path to exercising the responsibilities of citizenship. It's for this very reason that the philosopher, Hans Jonas, placed a concern for younger generations at the very foundation of ethics.

The fourth point I would like to raise is the issue for an ethics committee to give its reflections in an international dimension. For quite a long time, ethical reflection was confined within national borders with, as a result, a restrictive and reductive view of the issues at stake because of the single-culture approach.

In modern times, such an approach has become unacceptable. First of all, very obviously, scientific research knows nothing of frontiers, while discussion and collaboration between transnational teams is ever more frequent.

Another reason is that there has been a proliferation of ethical committees or similar structures in many countries the world over. In earlier times, they were restricted to developed countries, but increasingly their creation is spreading to developing countries. In this connection, you perhaps know that in the context of the follow-up to UNESCO's Universal Declaration, a program of support, which is called the ABC Project, which means Assisting Bioethics Committees, has been set up to help countries establish ethics committees where there are none.

This program, in which I am honored to participate, is aimed particularly at African countries. It is obviously essential when research protocols involve countries in both the north and the south, for them to be able to consult an ethical institution in each of the countries.

Finally — and, of course, this is a statement of the obvious, we live in a global village and borders are increasingly open. It would be totally counterproductive to ignore this essential dimension which must be conducive to a multicultural development of ethical reflection.

But opening bioethical reflection to international scrutiny has raised and continues to raise an essential query which is related to the duality between ethical universality and cultural diversity. The question is, are there universal ethical principles which can be acceptable and recognized by everyone?

The discussion is ongoing, but we must be cautious. There was a time, I believe, when the dangers of setting up cultural relativity as an absolute value were underestimated and as a consequence it may have become an alibi for alignment with the lowest ethical bidders.

There is indeed a challenge here arising from the internationalization of procedures. And we see today in France in the context of the reexamination of the bioethics laws, we can see how practices prevailing in one or other European countries [can serve as] an encouragement to "shop" for the most favorable rules. This can be used as an argument by those who consider there is no alternative but to align with the lowest ethical bidder.

In conclusion, first, I would like to insist on one of the main challenges for the future which consists in taking into account the person in its environment, and this challenge obviously raises the question of the relations between person, progress of science, and protection of biodiversity. I think it's a main concern for the ethical committees.

Finally, just a word about one final challenge that ethics committees will have to face up to. Is it a challenge or perhaps also an opportunity? I don't know. But I refer to the institutionalization of such committees. As I said, there are an increasing number of them worldwide. Some are relative newcomers, and others are seen as venerable institutions.

This opportunity also represents a danger. The danger is letting the consultative role slip away. In other words, losing their soul and paving the way for a society deprived of its capacity for reflection, having handed over to a club of professionals, not to say ethicists, but having the right to say what is right or wrong.

Such a society would be anything but democratic. Ethics committees can only be meaningful in that they bring enlightened meaning to social debate. Their essential role, nationally or internationally, is to spark debate. In this way, they preserve the necessary awareness of uncertainty, this essential component of our humanity. Thank you.


CHAIRMAN PELLEGRINO: Thank you very much, Madame Mouneyrat, for a most enlightening discussion of an issue and opening with such a wonderful summary of the issues.

Our next speaker will be Hugh Whittall, Director of the Nuffield Council on Bioethics in the United Kingdom.

MR. WHITTALL: Thank you. I do have to say it is a real pleasure and a privilege to be invited and to have the opportunity to speak to this Council, which I know my colleagues greatly admire. And it's a pleasure also to follow immediately after Marie-Hélenè, who I also know well, as we all are part of a mutual appreciation society. But for me, it's also unusual in a sense to just speak in this kind of environment as I prefer to see myself as one of the backroom staff. But, hopefully, I can just give you a little flavor of the way things work in the UK.

It was really interesting, actually, listening to Marie-Hélenè, because she and I, I think, have taken a rather different approach to this, as you will see in a moment. But what was really interesting as I was listening was how many points we will touch on the same kind of questions even though we are coming at it from a different route.

So the Nuffield Council on Bioethics is quite a unique body in many ways. It does resemble national bioethics commissions in some countries in some respects, but there are clearly some differences. And I think one of the questions we may ask is, what kind of differences are there? Why do they arise? And what kind of implications do they have?

That's not to say that in the UK the question has not been raised as to whether there should be a national commission, a statutory commission indeed. And it was only just over a year ago that Baroness Royall, who is the Minister of State for Health in the House of Lords, she said during a debate on amendments to the human fertilization and embryology legislation that the Nuffield Council on Bioethics, along with a number of other committees, have the appropriate expertise and sufficient time to devote to complex issues within their field. This distributed system of bioethical advice works well. It remains our view — that's the view of government — that a national human bioethics commission would not bring sufficient benefits in comparison.

Of course, I think there's a very long history behind this. And what I would like to do is to give you a little of that history, say, a little bit about the role as we see it, the role and the operation of the Nuffield Council on Bioethics, but also touch on some of the principles that it employs in considering issues, and its approach to these questions of consensus and public opinion. Again, that's something you've just heard something about.

So it was in 1991 that the Council was first established. It arose essentially because of concerns being expressed within the scientific community itself that there needed to be some greater ethical and social reflection on developments that were happening in basic science and medical sciences.

The government at the time was not terribly interested in setting up a commission itself, and it said so, although, the prime minister of the day, John Major, did welcome the establishment of the Nuffield Council at the time and even suggested that it's realm may be wide enough to extend to issues around, for example, food and agriculture and genetically-modified organisms. So it's not that there was no interest from government, but rather they did not see at that time and still don't see the need for it to be a statutory or a government body.

So in 1991 the Nuffield Foundation established the Council, and in 1994 the Wellcome Trust and the Medical Research Council joined it as the three funders, and that remains the case now.

Of course, the situation has changed really quite significantly since then, some fifteen, almost twenty years on. It's no longer the case that the Council is alone in looking at questions in this field, and in fact, we've got quite a complex network of advisory bodies. And the Minister, in the quote that I just gave you, touched on some of this.

But the perceived need for independent advice remains, but this is some of what we have in the field. We have government advisory bodies set up specifically to deal with a number of questions such as human genetics, gene therapy, and of course, animal procedures. Ad hoc advisory committees are established from time to time. There was one a few years ago, a House of Lords Committee, for example, on euthanasia and end-of-life issues. We have statutory regulatory authorities, a part of whose task is to give advice on the areas that relate to them, in particular, the HFEA [Human Fertisation and Embryology Authority] on the Human Tissue Authority.

The Nuffield Council is not the only independent body. The British Medical Association's Medical Ethics Committee is quite influential. And other academic bodies — for example, the Royal Society, the British Association, and the Academy of Medical Sciences — all play a role in this field as well and are really quite committed to engaging in a way that reflects on social and ethical issues that bear upon their areas of science and medicine.

So there's a lot of people in the field. There are good relationships between these bodies. There's no formal coordination. We take care not to tread on each other's toes, not to duplicate work unnecessarily. So there's an understanding of how this works. And I'll come back to this.

The Nuffield Council itself, I've mentioned its funding. The chair is appointed by the three funders. The chair is in post for five years. It's currently Albert Wheel, who is a Professor of Government at Essex University.

The Council itself, once established, then went on to select its own members. So we have a rolling process of recruitment of members selected by the Council itself. Members are appointed for an initial three-year term with the possibility of a second three-year term. So ordinarily they would be there for six years. They will come from disciplines including basic sciences, medical sciences, law, sociology, anthropology, philosophy and ethics, public health. We have a membership of around seventeen or eighteen.

It's important to say that the members are not there to represent their professional interests or any other sector or interest. In fact, they're instructed that they are not there to represent those interests. They are there for their expertise, their engagement, their willingness to participate and to share their expertise in this process of reflection. It's an important point that — again, I'll return to this — it is not a representative role.

The constitutional position of the Council is quite clear. It simply has no constitutional locus. In a sense, this means that it has no leverage, no essential leverage, but this is not necessarily a disadvantage. And again we'll touch on this again later. The source of its authority, therefore, is not about its position, its official or formal status, but rather about its ability to deliver work that demonstrates high quality and independence. And they are the two principles that its work is founded on, quality and independence.

The terms of reference, this in a sense seems rather too straightforward and obvious. But I think it's just actually quite important to pause and reflect on these three key points about the terms of reference of the Council.

The first is that it should identify and define and anticipate advances in biological and medical research that give rise to, or may give rise to, public concern. It is this question of anticipation that is an essential thing that the Council is very mindful of. The second is that it should report on such questions with a view to promoting public understanding and discussion. So this is the second distinct role, to promote public discussion and reflection. And the third distinct role is to make reports and recommendations as they may judge appropriate.

And I think, again, it's important to note that being in the position it is, its recommendations can be directed, can be put in any direction. It's not simply to government. Recommendations could entail issues of law, changes in legislation, of regulation, of professional codes, or of day-to-day relations within medical practice or elsewhere. And indeed recommendations can be and are regularly made, not only to government, but to industry, to professional bodies, to non-governmental organizations. So the Council is not limited in the directions to which it will look when it makes its reports and recommendations.

In practice, the way that the Council operates, is to appoint expert working parties to work on each particular project. Typically, a working party will consist of between eight and twelve experts from various disciplines within which fields touch on the issue in question. And typically, the working party will include two or three members of the Council itself. And the Chair of the working party, who will be appointed from outside, will sit as a member of the Council for the duration of the working party.

I think there's a tactical element to this. The Chair of the working party, being also a member of the Council, when they bring the draft report, their reflections, to the Council, has a commitment to the Council as a member himself. But also as there are at least two or three members of the Council who are on the working party, it gives a tie-in between the working party and the Council. And, again, I'll come back to this.

This relationship between the working parties and the Council is an important way in which work develops and emerges. There is what our current Chairman calls a "dialectical struggle" between the two bodies whereby intellectual issues are thrashed out, and there is, in a sense, a critiquing of work that is honest, it's open, it's engaged, and it produces through its dialectical process eventually. And I'll come back again to this at the consensus that we tend to find.

So a working party is constructed in this way. It goes through a process of what we call fact-finding and public consultation, which is again a very important part of the work. It represents a genuinely open inquiry. Everyone who wishes to speak on an issue will be heard. Whether views are taken from experts or from the public, there is no sense in which the Council or the working party feels it has to be led by that. And certainly, insofar as public views are solicited and a notion of the public view may be elicited, the Council certainly does not feel compelled to reflect or relate that or certainly not to follow it.

Not having a constitutional role, the Council does not have a democratic mandate in that sense. So there's no compulsion on it to follow public opinion. But it does listen. It does reflect. It tests those opinions just as it would any expert opinion as well. Insofar as opinions from the public appear simply as intuitions, they will be examined to try and understand what kind of underlying assumptions are involved there. And so those can be tested. They can be tested against evidence and against the particular expert views that are being presented as well.

The peer-review process that we use is also a significant contributor to the developmental work. We seek the views of eight or ten peer reviews, not at the end of a report, but it's probably during its process of development when ideas are forming. We invite expert peer reviewers to comment on the cohesiveness, the comprehensiveness of the draft report, on the cohesion of the principles, on the argumentation and on its logic. So we are really inviting them to engage with it, and they make a difference. The working party will respond. We would expect draft reports to be improved by the peer-review process. So, again, this is a process of engagement where everybody is in a position to contribute through this process of reflection and argumentation.

Reports clearly are published. This is a difficult part because they have potentially very different audiences. We tend to produce really quite lengthy reports showing the examination of the issue and making fairly detailed recommendations. These must be directed to policy makers. One of the principle outcomes must be policy focus. But at the same time, they have to have a good degree of academic credibility. At the same time, we want them to be understandable to a much wider public and to parliamentarians who like to only read one piece of paper rather than a large document.

So finding these different audiences is certainly very difficult. More recently, what we have tended to do is to produce different versions from everything, from 100 pages to two pages for different audiences. I don't think we've come to the end of this process, and I don't think we ever will find the solution to addressing so many different audiences with one single piece of work.

But what is important is that we don't see them as worthy reports that are destined for library shelves. They have to be — in fact, they are — this is just an illustration of some of the reports that we've produced over probably the last ten years. Some of these are still discussed. They are still used. They are still referenced.

We can't afford to print them all anymore in the numbers that they're needed. But the number of downloads runs into thousands per year and in some cases of these — health care research in developing countries, the use of animals in research — tens of thousands every year. So they still remain relevant and they're still used, and some of the debates are returning especially genetically-modifying crops.

So in going through this process, some of the key issues — and this is where we'll return to these questions about principles and consensus — we'll just talk through some of these, what I think are some of the key issues of what supports the way that the Council works.

The first is how important it is that the Council is in a position to choose its own topics for examination. The Council is funded by three funders: the Nuffield Foundation, the Wellcome Trust, and the Medical Research Council. We invite them, as we invite many others, to identify issues that may be worthy of examination. We talk to many people about what may be on the agenda. We hold seminars and workshops where we invite people to reflect on issues that are problematic at the time. But the Council itself chooses the topics. There is no attempt to influence that by the funders, and the Council would resist it if there were.

The criteria, the basis on which it chooses the topic, is that they should be timely. We're looking for things that are on the horizon so that when we report they will be very timely. There's some novelty to them, there is some complexity to them clearly, and the Council is in a position to make a unique contribution.

There have been topics where the Council has chosen not to proceed, for example, fairly recently on the question of the allocation of resources in health care, not because it's not an interesting question — it's a fascinating and important question — but it's one that many people have thrashed around at for many, many years, and there's no particular reason to think that the Council could provide a distinct contribution in that particular area. So it looks for something where it can provide a novel and unique contribution.

The further question then is, in considering any question, what principles does it employ? Again, we talked already this morning about pluralism, and there is a recognition in the Council of the importance of pluralism that many people take different views. And there is no a priori reason to suppose that one should be favored over another in all circumstances.

Maybe the easiest thing would be to refer you to this. We commissioned a report a year or two ago that was prepared by John Harris, who is a notable philosopher and ethicist. He and a colleague of his did some work for us in trying to identify what the Council had done in the past and what it said about how the Council approached this question. His report is on our website.

It's a very serious, thoughtful report. And there are a number of issues that could be seem repeatedly through the Council's reports such as prevention of harm, beneficence, respect for persons and autonomy, justice, informed consent, confidentiality and privacy. And what he noted — well, they noted. He and his colleague, Sarah John, noted — was that over the course of the Council's works they increasingly developed clear and transparent ethical frameworks on which the reports were based.

So whereas in the early works, the Council's reports would tend to simply lay open an issue and then set out its conclusions and recommendations, increasingly in the latter reports they have identified the ethical principles on which they are constructing their arguments, they lay those down as an ethical framework, and then the conclusions are sign-posted and clearly referenced to that particular framework.

So if we look at the recent reports on the public health, which took a kind of J. S. Mill liberal state as a starting point, developed it by looking at how that could be updated to a current contemporary liberal society introducing values of, for example, protection of the vulnerable and of reducing unfair inequalities, it constructed a notion of the state on which it could then found its approach to issues in public health.

So this basically became more and more explicit, but it is not a single approach that is taken in all cases nor should it be. There is not one single universally applicable framework that can be distinguished throughout the Council's work. And in fact, as Harris has put it, there is a need for policy advisory bodies to retain greater flexibility to incorporate new or different elements in response to the changing social and technological environment. And, indeed, as we consider different cases from animal welfare through to genetically-modified crops, it's difficult to imagine a single set of principles or approach that could apply in all cases equally.

So the further question here is about consensus. It's been quite interesting to note that the Council has achieved consensus in all of its reports. There's not a policy document. There's not a founding document of the Council that said that this is what it must do or this is what working parties must seek to achieve.

So in a sense, I'm just kind of trying to read into how things happen that helps to produce this. And I would just point out three things, I think. They're not alone. There may be other factors, and how they weigh in is difficult to measure.

But first is the fact that individual Council members and individual working party members don't come with an affiliation. Of course, they belong to professional groups. Of course, they belong to professional societies. Of course, they have certain philosophical and ethical views. But they don't arrive being representatives and having to associate themselves directly with these. This is important. And they sign up to that when they join in with the process of within the Council's work.

The second point is, in a sense precisely that, the willingness to engage in these issues, to approach them with an intellectual honesty which says that we will look at all questions, we will challenge them all, we will work them all through, and we are willing to sign up to something which says, "This is a good approach that is workable."

I don't think that anybody imagines that what we are trying to do is to find the definitive and final word on any question. That isn't to say that the result is unsatisfactory. But, nevertheless, I think there is a willingness to be a participant in something that hasn't yet finished.

And the further point is this one I referred to earlier, which is that the relationship between the working party, which consists of particular experts working on a particular project, and the Council, which has a longer-term overview and which receives reports back from the working parties, receives its draft reports, and has to sign off and sign up to its final report, is this dialectical struggle.

The challenge. It's quite interesting watching, as I have done over the last year or two, the chairs of new working parties come to their first Council meeting where they are bringing the work of the working party to the table for the first time. And on each occasion, there's a kind of sense of being shell-shocked by how rigorous the Council is in challenging the assumptions and the work that the working party is bringing to them. So people have to be really quite robust in working through this, and they're ready to do that. And they enjoy the benefits that come from it as well.

I don't think that tells you the whole story about consensus and how you get there, but I think that's a few of the things that contribute to it.

Impact. How do we measure the worth of what we do? How do we look for it even? It's very difficult, and, again, we won't find a definitive answer to this. We have tried to put some numbers on this. The reports that the Council published between 1993 and 2005, we examined all of the recommendations that we had made over the course of those reports, and we found that 53 percent of those recommendations have been implemented. And we're quite aware that we cannot claim a causal relationship between our recommendation and that implementation. However, we do know through the kind of personal contacts that we have, we do know through the kind of profile that we have, simply through working and living and talking in this environment that there is some measure of influence that the Council has had in those areas.

If we look simply at the last three reports, we can see some very immediate relationships between the Council's work and the consequences. In the end of 2006, the Council published a report on critical care decisions in neonatal medicine. It published what was really quite a controversial set of recommendations as to how premature neonates should be approached, how their treatment should be approached in intensive care.

This was taken up in discussion by a working party organized by the British Association of Pediatric Medicine. This included representatives from the Royal Colleges of Obstetrics and Gynecology and of Pediatrics and Child Health, the Royal College of Midwives. And they have recently now published guidelines that are based substantially and explicitly on the recommendations that were made in the Council's report.

We published about fifteen months ago a report on the forensic use of bio-information. This included recommendations regarding the taking and retention of DNA samples and the keeping of DNA profiles of people who had been arrested in connection with crime. In the UK, there are over a million profiles retained from people who have been arrested but have never been convicted of a crime.

A case known as Marper — one of the applicants was named Marper. The case went recently to the European Court of Human Rights. And the Court substantially quoted the Council's report when it effectively required the UK government to overturn its current policy on retaining samples from non-convicted people. So I think that we maybe haven't done ourselves any favors with the UK government, but the role of our reports in influencing the outcome of that particular case was really very substantial and very visible.

A public health report — I referred to that a little earlier — again, has been substantially quoted in some recent discussions over fluoridation of water. There is a statutory process now for considering how and when the water may be artificially fluoridated. And the Council's report in setting out, shall we say, the basis on which state intervention in public health can be justified, again, was used and quoted in those cases.

And we have ongoing discussions with government policy units over public health questions around obesity and alcohol. So we can see the profile we have in those discussions. And I think this is partly the value of making sure that our work is very much policy-focused rather than simply being — maybe this is a bit pejorative — rather than tending more towards the academic side, which it maybe has done in the past.

Of course, this is all terrific. But there are some limitations on what we can do and what we can achieve and how we're seen. There are some who occasionally suggest that the Council is unduly influenced by its funders, who are in the Medical Research Council and the Wellcome Trust in particular, clearly within the scientific and medical community. That influence is not there. But it is not difficult to see how some people might try to paint it. And we have to work against that and demonstrate our independence in this respect.

There is a question about representativeness. The Council is not compelled to try to cover all bases in the recruitment of its members. This is a strength, because it would be very difficult to construct a committee — I know that this happens in France. It happens in other European countries as well — to cover all religious and philosophical areas or professional areas.

We find it really quite difficult to imagine how a committee can be constructed in a way that would function in the way that ours does, but with those having to represent so many different areas. However, it does mean that we are left with a position where some people may claim that they simply have no voice. They have no representation there. We make sure through our process of fact-finding, of consultation, that everybody does have the opportunity to contribute, but this is a difficulty. And we do struggle with the notion of whether we should be looking for people from certain minority ethnic groups, from certain religious viewpoints, or from other philosophical viewpoints. And that self-examination will continue.

This question of our locus can be problematic. We have no formal power base, but our independence is a strength. So I think one can see some of these both as strengths and limitations.

In terms of responsiveness, we cannot respond and shoot from the hip on a question that arises in the press today or tomorrow. It's very tempting, but we cannot do this. The way that we work is to conduct these in-depth analyses. That is the strength that we have. But it does mean that sometimes people feel that we're missing an opportunity or failing to respond to particular questions.

What is a difficulty is capacity. Because of this, it means that we can only produce a certain output. Effectively, we average one report per year. We've got a long list of things that we could be looking at, but we resist the temptation to fire out quicker reports. It's clear from the feedback we get that the depth, the complexity, of our reports is one of our strengths. So we must resist the temptation simply to turn out more and more quickly.

These things are almost impossible to manage in a satisfactory way. Working from the base that we do with limited capacity, with our focus on big reports, what we would like to do in these areas are much greater than what we are capable of doing. The Council looked recently at this question of public engagement. This is not just about understanding the public but about promoting discussion of bioethics in the public arena more generally, not to encourage people to follow our line or to take up our recommendations, but simply to, as Marie-Hélenè put it, encourage the idea that civil society, that the strength of democracy is increased by reflection of these issues.

But we cannot educate the 60 million people of the UK. I don't know whether you can manage the 300 million people of the United States. But we just cannot realistically take on that task. And so there are several things that we do that are more limited in this field.

The international role is an interesting one. We have strong connections across Europe and across other parts of the world as well through European forums, global forums, with the work with UNESCO that has already been referred to. There are issues that are working on a global basis that we must be ready to look at and to look at with our partners across the globe whether it's about transplantation, embryo stem cell research, internationalization of medical research, the direct-to-consumer diagnostics and therapeutics. All of these things we're going to have to look at on a much more international basis than maybe we have in the past. So this international dialogue is really essential that we maintain it.

Public engagement I touched on. But young people, again — Marie-Hélenè touched on this as well — we recognize this is an important feature to enable people to increasingly from a younger age be willing to be ready just to find the language to talk about some of these issues. But we can't do this alone, and what we are trying to do is find partnerships in which we can work with younger people.

So we've worked with, for example, a touring theater company where we've fed in with our reports to several of their productions that they take out into schools and other areas. We work with the Nuffield Curriculum Center to produce materials that are made available to teachers through citizenship and science classes about animals in research and other things. We're working with the British Association with their after-school science clubs. And we're working at the moment with Teachers Television, which is a national TV channel that produces material freely available to teachers. So we're trying to work through other agents and other people on the back of their work and their resources to try and reach a bit further.

But the important part of this as well is that I think all of these things are about a commitment to be involved in this for the long haul, really to be working for the long-term. We are not only trying to deliver solutions to immediate problems, but also to realize that we're involved in a long-term process of engagement, of enablement, of discussion that doesn't necessarily produce distinct answers today. But we must have confidence that it's producing some additional quality over the longer term.

I'm running way beyond my time. I just have a few points to summarize, if I may. Forgive me.

I rather like this word, 'adhocracy'. We are really quite adept in the UK at finding practical solutions and to dealing with them there and then. What tends to happen, however, is that these worn-off practical solutions get integrated into the machine, and what we're then working with is quite an odd complex set of machinery. But then we become adept at working with that as well. And so this is something that, in a sense, is unusual. I don't think it is unique to the UK. But if the Nuffield Council is unique, well, it's within a system that enables it to be so.

Secondly, we have the separation of government and the administration. When the government goes, another one comes in, everybody else stays in place. I know this is different to how it is here. But what it means is that there is an acceptance of the durability, if you like, of people who within the advisory structures, whether they are statutory, non-statutory, or anything else. And so we can become a part of the furniture, even though we're not within the government machine, as it were. And there's an understanding and acceptance that those things can persist in that way. I'm just talking about, if you like, the uniqueness of our position.

The influence of the Council being based on quality and independence, this simply cannot be overstated. That is it. That's the top and bottom of it for us. If we didn't deliver this, we would pack up. That's the burden that, in a sense, I carry coming in as a director a couple of years ago to maintain the work that has been done in this over all of the years. But this is true for all national bioethics commissions. Whether statutory, whether governmental, whether independent or anything else, this has got to be true for all of them.

Finally, our interventions must be timely. They must be relevant to policy. We are not putting things on a shelf. We are not doing philosophical ground-clearing. We are trying to deliver things that have got a meaningful reasoning and a meaningful impact for questions that are distinct and timely. And just a few points of my own personal reflection. I don't think that if we tried to do it again we could do this. I don't think that we could replicate the position that the Nuffield Council on Bioethics is in the UK. And I don't think that you could recreate the conditions for it here or anywhere else. I think one can learn from the way it's worked, from how it succeeds, and on the limitations that it has. But I don't think that one could try to replicate it given a particular history.

The question of achieving consensus is an interesting and important one, and I think that it's essentially down to the goodwill of the people who are involved, an appreciation of engagement in this intellectual activity, and this non-alignment of individuals with particular positions when they put themselves in this place.

The question of striking a balance is one that over a number of years I've been saying this forever myself. We must find a balance between this and this. And I think that was all wrong. I think that it isn't a question of balancing things that are in two different places. I think that the Council would regard this as not a science or ethics, but science and ethics. These are things that work together, that one is strengthened by the other. Of course, there are times when there are things that are in conflict, but it's not essentially pitched in these terms.

Bridge-building is something that I think that we do a lot. This is between disciplines. It's between different communities. But I think more than anything else, I would suggest that one of the things that the Council does is find this bridge between academia and policy environments. And that's a really important one that hasn't always functioned terribly well, and it's something that I think that we do manage to do.

And finally, appropriately, I don't think we're looking to have the last word on any subject. The world will change. Science will change. Evidence will grow. And I think it would be really too much if we were to claim that we could have the last word in any debate or in any particular part of policy. But we would hope only that our work can enrich both the policy and the debates.

We will return to different questions. We will always have different questions to reflect on, and I think that, again, this is where we come back to the same points. It's the nature of the thing that we just keep on talking about it.

I wish you well with your deliberations today. It's going to be a fascinating day. I'm really looking forward to it, and it's been a real privilege to be invited to participate. Thank you very much.


CHAIRMAN PELLEGRINO: Thank you very much, Mr. Whittall. A member of our Council, Professor Elshtain, I asked her to begin the discussion, but she unfortunately could not make the meeting at the last moment and so I've asked Dan Davis to step in. Dan has had the opportunity to represent the Council on one of two international meetings so that he's pretty well alerted to some of the variety. And I've asked him, therefore, to open up for the Council and then provide the opportunity for the Council members to comment or ask questions. Dan?

DR. DAVIS: Well, first, I want to thank you both for traveling so far and for joining us today and for providing us with such richly informative presentations. And, second, I want to commend you, Madame Mouneyrat, for your stamina and fortitude in dealing with forty members. We have a Council of eighteen, and I just can't imagine what that's like. So I tip my hat to you.

The question that I'd like to pose — and you alluded to the subject matter of this question, Hugh, and as did you, Madame Mouneyrat, but I'd like for you to expand a bit on it — and it has to do with the matter of moral frameworks. And I pose the question because of the experience of this Council, which has in some of its publications appealed to the concept of human dignity.

And that appeal has been somewhat controversial. We were the target of some criticisms by some well-known American bioethicists who, in effect, argued that it was an appeal that was somewhat out of the mainstream of American bioethics, that we were employing a not-well-understood concept somewhat vaguely defined. And as a result, we actually rose to the challenge and attempted to explicate that concept, not in a univocal way but by publishing a document that offered twenty-three different perspectives on that particular concept.

So I'm interested in the moral frameworks that emerge or that you employ within your own work and how you have gone about developing those. I know that certainly the concept of human dignity is one that has a much greater resonance in a European context than it does here in the United States. But I think part of our argument is that it has a universal significance and, thus, although it may not be one that's resonant with the American tradition, it's one that we should consider in dealing with some of the challenges of bioethics today.

So if you could comment a bit more on that aspect of your work?


SECRETARY GENERAL MOUNEYRAT: Thank you for these questions. It's a very difficult question. As I said, we tried to begin at the beginning of the work of the Committee to see if we can have principles like human dignity, making this allusion.

I think that human dignity is, as you said, at the heart of the reflections of the French national committee. But when you have said "human dignity," that's not whole. What is concretely human dignity and you can think about, I think, in reference. But what is undignified and it's a concept which is at the heart of the reflections of the committee. But we try to define it and it's rather difficult at the heart of the concept of human dignity.

But you have also after that secondary concepts that are very influential like informed consent, like the principle defined by the Philosopher Kant, which is to consider each person as an end and not a [means]. This is very, very important and always at the heart of our reflections.

There is another principle which is nowadays, I think, very important, the principle of the status of the human, of the person. And as I said, the question about the status of the heart of a person and the — what we call in French. I am sorry for my English — the "commercial" use of the person or part of the person is a very fundamental principle which is now written in the law. But in the context of the re-examinations of the bioethics laws were very important pressures for admitting, for instance, surrogate motherhood. We very well see that the whole principle of the non-commercialization of the body and of the person is going to be put in question.

CHAIRMAN PELLEGRINO: Thank you very much. Carl?

DR. SCHNEIDER: I hace a rude mechanical interest in what actually happens after reports issue. You said that they were quoted, and you gave an example of a quotation and judicial opinion. I spent two years writing judicial opinions in the United States, and I'm afraid that the fact that something is quoted an opinion probably tells you more about the anxiety of the drafter or to find somebody else's words to use instead of inventing his own than it does about where the idea comes from.

So my first question is, is there any reason to think that these kinds of councils actually change the way that policy is that would not happen in the absence of the council? In other words, I think that most of the things that councils say they say because cultural and ideological trends move them in that direction. But they're moving everybody in that direction, and if it weren't this council that does it, it would be that council that does it.

The second question is, assume that everything the council suggests gets turned into law and policy and practice. Is there any reason to think the world is a better place for that? Is there reason to think the world is actually a worse place for that?

MR. WHITTALL: I think that we probably, all of us, should challenge ourselves regularly with those kind of questions about whether what we're doing is really much more than a bunch of nice people getting together and talking about the things that we like talking about together and telling them to each other. It sometimes, I think, could be a risk.

I think that it is probably true that there are cultural and ideological trends, and that we are, if you like, in the current of where they're going. But that doesn't mean to say, first, that we can't influence the direction of those trends. And we should be aware of them. We should be able to identify them. We should be able to understand, try to understand, what's in them and try to have some impact on them. And this is, I think this is the point about having some regard for the long-term that we're engaged in here.

And on the second aspect of this is whether we have any impact on specific outcomes in terms of particular policies. And I think, you know, each council can take a view on the degree to which it wishes to engage at a really broad ideological level or a rather more specific policy-focused outcome.

And I think that if we examine our work and we do try to have quite clear policy-focused orientation and we do engage with the individuals who are involved in making, examining, and changing those policies, as I said, it's difficult to produce hard evidence that this wouldn't have happened had it not been for us, but we're certainly in amongst it. And policy is an imprecise business that is filled with all kinds of influence, and it's not simply good evidence always.

But I think there's reason to be self-critical. There's sometimes reason to be skeptical, but there are certainly good reasons to stay in amongst it.

DR. SCHNEIDER: Are there reasons to think that the policies that you've proposed that were put into law or practice actually achieved their goals and did those goals turn out to be good goals to try to achieve?

MR. WHITTALL: I'm not sure that there's good enough evidence. And, in fact, it's one of the interesting questions that we've increasingly focused on in recent times is the need for evidence both on the construction of arguments and in the critical evaluation of them afterwards. So I think I would just essentially take your point that we need to maintain a collection of evidence about that.


PROF. DRESSER: I wondered if Madame Mouneyrat wanted to respond to Carl 's question.

CHAIRMAN PELLEGRINO: Would you like to?

SECRETARY GENERAL MOUNEYRAT: Yes, I'll try to be brief on a very difficult question. In France, the exact title of the French national ethics committees is French National Consultative Ethics Committee for Health and Life Science. So it means that we have no power of decision.

We try to have a power of influence, but I think the difference, we are always into... We are criticized on exactly two opposite positions. One kind of criticism is to say you are only consultative so you are not useful. You are a group of citizens which likes to think together and no more.

And if our opinions, recommendations, have some kind of influence [then we can be told we] are not a democratic institution, and [we] are only consultative and [we] go too far for our role. So I think that we have to deal with these two kinds of approach. And it's not so easy and, as Hugh said, we have to think about this difficulty during all our work.

That's why one thing I want to say is [there is] a very important difference between opinion and recommendation. If you give opinion, you give an opinion open to debate, for societal debate, for the political debate, for the parliamentary debate.

If the committee gives a recommendation, it goes further on. It has been considered [to be] contrary [to] our strictly consultative role.

What I would say also, in France, as I said, we are publicly funded so we have to be evaluated. There is a recent law in France which[requires organization] which are publicly-funded to [have their performance evaluated]. And there is nothing much more difficult than to evaluate how a national ethics body is performing and [it is] difficult to find criteria for evaluating this performance. It's clearly not the number of recommendation or opinions [issued].

In France, we choose to evaluate our performance with criteria linked to how many visits we have on our web site. So what is the interest of the society [in] our work? And the second criteria is [whether] the press is interested and how many articles in the newspapers, on the TV, on the radio we have at the end of each press conference. It's clear that one other criteria is the way the parliament follow up on our recommendations, but it's not the major one.

I don't know if I answered [your question fully].

CHAIRMAN PELLEGRINO: Thank you very much. We have five members of the Council who wish to comment. I am going to extend the time by fifteen minutes, but no longer than that. Otherwise, we will invade the time of the subsequent speakers. So I have Dr. Dresser, Dr. Meilander, Paul, Alfonso, Janet, if I make it quickly to give your first names. We'll try to do it in the time available, I hope, and then go on to the next session. Rebecca?

PROF. DRESSER: Okay. I was very interested in the comments about fostering public engagement in education. I think in the United States there has been an emphasis on the policy focus of commissions. And from my experience, I believe that education should be equal, if not greater.

I know for me the most rewarding part of being on the Council has involved participating in programs at colleges and universities. And we've had students visit our meetings and so forth. So I wonder if you have advice about how a national council should be set up in terms of personnel and operations to promote that part, that function?

I was interested in you said you have a yearly conference. Is that open to the public? Is it large? How does that work? Those kinds of things.

MR. WHITTALL: Shall I just answer first? I mean, I think Marie-Hélenè will have other things to say.

Firstly, I agree with you that that is an important function, and I was keen to point out within our terms of reference there are three elements. One is identify issues and explain them, one is make recommendations, and one is to promote public discussion and understanding. That is, in my view, the most difficult one. And I don't think that I can probably tell you what is the best way to do it. All I can do is say what we can manage with the limited resources available, but there are a couple of elements.

One is that there are several members of the Council who take a specific interest in this area. So I think that you need to have a clear commitment on the part of some portion of the council to do this work. So we have several members who sit on an advisory group where we draw in expertise from other areas of education, of youth work, of media and communications expertise.

So we have a separate advisory body that helps us with the work that we do in trying to push out, mostly to young people, because they are a captive audience. They're the easiest people to reach simply because you can go through schools, you can go through places where they are likely to be. We haven't yet cracked social networking through the Internet. That's something that we need to look at next because we are just so way off the pace with how information and ideas and conversations are taking place.

So I think that we need to use our advisory group to push us into some of those other arenas where you've got people and you can put things in there, and they want to talk about them. They will talk about them, and they will talk about them well. But we just haven't yet reached nearly as far as I think we probably could and should.

SECRETARY GENERAL MOUNEYRAT: Yes. As you said, we organize each year an annual conference, and it's the law. The law makes us the obligation to organize such a conference which is completely open to the public. You have in the newspapers announcements in the newspapers and everyone can come and attend without any kind of an invitation.

So for the young people, we are not as well organized as the Nuffield Council. And we [work] in a very pragmatic way. We have a network of teachers from Paris but also from every place in France, which are interested and who work with us voluntarily and with the young people during months and months on subjects they have chosen. They are very free to choose. And sometimes members of the committees go to the schools and have a dialogue with the students and the teachers to prepare for the annual conference which takes place in November.

But the difficulty in France is two kinds of difficulties. It's that in the programs you have in teaching are very rigid programs. Bioethics teaching — I would prefer to say sensitization — is not written in the programs. So the teachers and the pupils are obliged to volunteer to work more [on an extracurricular basis] and it's not so easy because [students] have exams at the end of the year.

And I think that one thing which would be very important is [for] the education minister [to] accept ... that ... teaching bioethics is important for the pupils and they have hours very concretely written for that. And I should say that the program [exists] for the high school students, but it's more important for the medical students.

In France, the studies in medical science [do not focus] on bioethical questions. And when we have students, we see that we have students in law and philosophy [studying bioethics], but never students in medical science. It's a really great problem in France.

CHAIRMAN PELLEGRINO: Dr. Meilander? But before you speak, one second, I'm going to use my Chairman's prerogative again and suggest a slight change, because the time is getting very short. If our Council members will present their comments and our visitors will hold, make notes, and comment on those parts of it you wish to make a contribution. Gil?

PROF. MEILAENDER: This is really a question, I think, primarily about the work of the Nuffield Council, but it grows out of observing a sort of difference on the matter of consensus. I mean, you emphasized very much the desire for consensus, whereas, the French body is, in fact, structured in a way that doesn't always lead to that.

And, in fact, if I understood you correctly, you said that you have achieved consensus on each of your reports. That strikes me as very strange. It suggests a need for broader horizons or a wider range of opinion. And you ascribed it at one point to the fact that the people who come under the Council understand themselves or are committed to — I don't have your exact language — but something like non-alignment with particular positions.

And I would think that even a willingness to think that it was possible for me to be so non-aligned is, in fact, a philosophical position that one has taken up. So I'd just like a little more reflection on consensus and whether, in fact, these people really are non-aligned from the start.

CHAIRMAN PELLEGRINO: Next I'll ask Paul McHugh.

DR. McHUGH: Well, first of all, I want to thank you both very much for coming to talk with us. And it's extraordinarily illuminating for us to hear from councils of bioethics and other sources from other countries illuminating what we are thinking about and seeing things that are common amongst us and things which are perhaps different amongst us. And so I'm very, very grateful to you, and I'm sure I speak for many others here.

I have two questions, and they've been adumbrated in the other questions that you've been asked, but they perhaps sharpen it just a little bit. The first question really derives and relates to Carl Schneider 's point about how you might show that you are effective.

And that brings to mind that you came into being at a certain time, presumably facing something that you needed to be effective about. Maybe 1991 was an important year in Britain. Maybe your country was concerned with some particular issue, perhaps the genetics of brussel sprouts or something of that sort. And so my question is, now that you have come and existed, do you think on reflection back on other arenas of science and society that you would have had, if you were in existence, that might have avoided the terrors that happened at that time?

For example, in the United States, the eugenics movement was a scientifically promoted and developed process and democratically expressed idea in over thirty-seven states in our country where sterilization of the mentally retarded was promoted into law. And ultimately it was expressed in the most vigorous form, but perhaps one of America 's most distinguished jurists, who supported such sterilization of these people by saying, "Three generations of imbeciles is enough." That was, everybody knows, Oliver Wendell Holmes, Jr. And the case was Buck v. Bell.

And do the councils that you have now, the working parties and the kinds of approaches that you have of bringing people in, would you on reflection see that the process, the democratic process, in these states would have been aborted in such a terrible decision by our Supreme Court could have been obviated? That's the first question.

The second question perhaps is a more playful question particularly directed towards our French friends. And it comes from the emphasis is both of you though have had on the young and your identification of the young as the people you want to work with. But it was a great Frenchman who once said that if you're not a communist when you're young, you have no heart, and if you're not a conservative when you're old, you have no head. And so what I'm asking of this is, in what way are you either supporting the heart of the young or the head that they might eventually have by the process that you have in mind?

I believe, of course, that the problem for the young, the natural problem, because I remember when I was young and very left wing, my problem is related to a lack of prudence in some of the things that I would propose, an ignorance of, and therefore not a sufficient respect for the traditions that have formed the cultural heritage, and an unawareness of the fragility of the institutions of our society such as the university of the family. So those are the questions that I have for you.

CHAIRMAN PELLEGRINO: Thank you. Next I have Janet Rowley? I missed Alfonso — excuse me. My handwriting is not clear. Would you yield?


CHAIRMAN PELLEGRINO: You have it, Janet. Go ahead. Alfonso will follow you.

DR. ROWLEY: Well, I have a comment and a question. And the comment is more for Madame, that at least now by law or at least by the practice of the National Institutes of Health and some of our other scientific things, ethics is at least taught to the graduate students because they have a required course in ethics. Now, these aren't medical students, but I'm sure that the medical students also have exposure. So at least that aspect is taken care of.

But the question I want to ask to each one of you because our Council is more parallel, I think, at least in its derivation to the French system than to the Nuffield Council, each one of you, you've sort of articulated why being either totally independent or in some way having some governmental responsibilities have directed how you proceed.

As we think about recommendations for the future, if there is a future of bioethics councils, except that we've had them repeatedly over years, I would very much appreciate your reflections on would you have preferred to be more independent or would you have preferred to have a greater role in the governmental process?

CHAIRMAN PELLEGRINO: Thank you, Janet. And the final question for this morning — then we'll have the answers from our visitors — Prof. Gómez-Lobo, thank you for your graciousness.

PROF. GÓMEZ-LOBO: Thank you for the two wonderful presentations. As I was hearing those presentations, I was puzzled and I'm going to formulate a short question to Hugh, if I may.

And it's this, that these are two bioethics councils deliberating about bioethical issues. Now, bioethics as I understand it is a field of applied ethics or moral philosophy, and I think there's a very, very solid argument for showing that moral philosophy cannot be done inductively. In other words, you have to make up your mind on principles of some sort.

Now, to say that a council is pluralistic is really not to solve the problem at all, because the problems will arise.

Now, Hugh did mention an intervention by John Harris. Now, I'm not sure I understood it correctly, and I will ask you to briefly expand on that. In other words, what would the role of such person be in the Nuffield Council? And the further question would be, would you call upon other philosophers in the field to play that role, if I'm understanding it correctly? Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Now, may either of you want to respond in what order, either of you? Ms. Mouneyrat?

SECRETARY GENERAL MOUNEYRAT: Yes. I will try to make a brief answer to your various questions.

As I said, the question of the consensus is a very important question for us. And I think that what is important is, I repeat it, how to stimulate the social debate. And the question which has been raised by our former President, Jean Pierre Changeux, is to know if it's easier to stimulate the social debate from a point of consensus with the risk of the difficulty to contest to consensus or if it's easier to have this debate with only different arguments and points of view. I don't have the answer of the question, but I think that it's this way of approaching the question which is important.

For the eugenics movement and the effectiveness and the democracy expressed, yes, I think that you raised a very, very important issue.

And I will respond also about the young. We have to be very cautious regarding what can be [seen to be] considered as [an] expression of democracy. And why? Because I think that influence — and nowadays we can see it — we have more and more influence [from] the lobbyists and [from] the media, as I said, because it's easier to transmit a very strong and clear cut point of view. And we can be very careful that this expression does not become the expression of the democracy.

And for the younger people, you are very right. The danger is the very interest and for what they think to be the modernity and at the name of the modernity to participate in change or is existing in all institutions. But the experience is that it's their first position. And [in] the name of the modernity we abolish any principle, any barrier, et cetera.

But when you take time for having a very calm and quiet discussion, they begin to think and when they say that it's a success and to say, "Oh, yes. I didn't think about that. It's not so easy as I thought." So that is our job. We try to do it, not perfectly, but it's our aim.

One final word for our independence. Yes, I think that as I said and as Hugh said, we have to try to maintain very, very strongly what we consider to be our independence because, as you said and I said, it's one main condition of our credibility. And if we have no credibility, it's impossible for us to play a role in the elaboration of a social debate.

CHAIRMAN PELLEGRINO: Thank you very much. Mr. Whittall?

MR. WHITTALL: I will be very brief, although, I think that one or two difficulties arose because I was already being too brief.

I think you're right to pick up this question about non-alignment, and that needs picking apart a little more. I think it's not to say that people don't have positions or they don't associate themselves with those positions. But, rather, the fact that they are not there in order to represent a particular group of people means that they don't have to simply say, "Well, I can't accept this because I can't go back to my people if that is the final position."

So I think that to say that they're not there to represent a particular group or a particular position frees them up from feeling that they have to commit themselves only to one particular outcome. I think that's as much as I will say. Of course, people do have particular beliefs, particular professional associations, and we can't suggest that that won't be the case.

I think the question about, were there critical issues that brought this about or that would have been different had the Council been there at the time, I think there have been a few critical issues over a number of years, going back to certainly the early '80s when the debates over embryo research were taking place. A few years later when the first debates over genetically-modified organisms were taking place, I think they were highly problematic.

Now, there were one of two subsequent ones as well and, even in more recent years, around the use of human tissue, commercialization about all sorts of things, where I think that certainly people within the medical and scientific communities were finding it very difficult to manage that kind of political environment that surrounded that. A number of those found a lot of conversations going on with people in different disciplines and realized that some of these discussions could help see all of those things through.

Now in some cases, this was successful. And I think that part of the reason for having an organization like the Council was about saying, "Well look, we need to have a place in which we can see that kind of discussion conducted." It was not successful in the case of genetically-modified organisms. I think the way the policy ran was really problematic in the UK. And the process of dealing with embryo research was probably much lengthier than it needed to. So I think you could probably identify some things where things may have been different. But, of course, we can't say for sure how.

The question of how and why we're engaging young people, I don't think that we would want to take the energy and the heart out of how young people approach some of these questions. But in talking to educationalists, one of the things that struck us very forcefully was teachers in the classroom, whether they're teaching science or citizenship, will raise a question, for example, about use of animals in research and then what they see is chaos. The class will fire off in all directions. Fine. But it's very difficult, then, to find a way in which to manage that into a productive debate.

And one of the things that we can do is to offer, if you like, information, materials, structures in which those debates can then be conducted, not to try and instruct people in any particular direction, but to give them a language and a frame in which to conduct that kind of conversation. And that I think is beneficial, not just in that particular instance, but for the way that people are able to have these conversations anyway.

Independence, I think if you ask any member of our Council, "Would you like to move closer to any government institution," the answer will be no. Quite clearly, I think for those of us who have worked in those institutions and have moved away, I think we would prefer to stay in the position we are. I don't think that's necessarily right for all people in all cases, but that's just a reflection of where we uniquely are.

Again, John Harris' report, by the way, was something that we asked to be conducted, not for him to give his view, but simply to, if you like, gather up what the Council had done in the past to help us to identify, if you like, what were the features of the Council's body of work so that we could reflect in the future how we wanted to put things together.

And, yes, one does have to identify and commit to sets of principles. And in each particular case, I think the point was that emerged from that, that's it's necessary to be explicit, to be transparent, to show why you've worked with those principles, why that framework is operative in this case, and be ready to have it challenged and discussed as well. And it was just a way of opening up that as clarifying that that's the process by which we work.

CHAIRMAN PELLEGRINO: Thank you very much, Council members and the visitors, for allowing me to manipulate the schedule. But I do feel a responsibility to those who come later to have an opportunity to express themselves as well. I think we can have a break now until 10:10 — oh, 11:10.

I haven't changed my watch. This is reminiscent of my failure to adapt to modernity from back in the Middle Ages. Thank you for your additional indulgence, but we will be back at 11:10.

  - The President's Council on Bioethics -  
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