Noelle Lenoir before the NBAC

This is a five-page excerpt of Lenoir's remarks before the National Bioethics Advisory Commission, Genetics Subcommittee, meeting September 18, 1997, at the National Institutes of Health in Bethesda, MD. The excerpt is taken from the NBAC's own transcript, prepared by  CASET Associates, Ltd., from Fairfax, Virginia. The complete transcript is available from the NBAC; call 301-402-4242.

MADAME LENOIR: Well, first of all, I thank you very much, indeed, to welcome me because this is the first time that I have had an opportunity to attend a meeting. I am a jurist by training, but, you know, I have here a colleague and perhaps some others.

I am a member of the French Constitutional Court. It is my main function, which is not like your Supreme Court, but it is a court, which is involved in the judicial review of the constitution in the French   way. So, I am one of the nine judges and one woman. So, I am the token one.

But apart from my main functions, I have international activities and we are colleagues in the same body, which is an advisory committee at an international level and it is the International Committee on   Bioethics at UNESCO because you know that long -- the institution of the United Nations, UNESCO is the only one to have a specific competence in science. So, it is promoting research programs and at the same time, has created this committee to which participate very prominent personalities from different countries.

We are 55 from 40 countries and as far as the North America is concerned there is my friend Bartha here and there are two American persons, Bruce Alberts, Sidney Altman and Harold Edgar. So, it is not, I think, a very bad composition and you have people from -- many constitutional judges from supreme courts and jurists, lawyers and scientists and philosophers and diplomats.

This committee was asked by the states of UNESCO to draft a declaration, which is going to be an international instrument. That is to say that it is not similar to a declaration which is made at the end of a congress, for instance. It is not a binding instrument. It is not a treaty, but it is meant to have a moral influence and to try to ensure a certain stability in the field of biotechnology and ethics, which is more and more mediatic(?) -- you say that -- issues for the media with the cloning and all that.

So, I hope very much that no Dolly is -- Dolly is not to have a sister or a brother until November, that is to say, until the adoption  of this takes because each time you have a very emotional event in the  field of biotechnology. Each time public opinion and politicians ask for prohibitions. So, we don't want that to occur in the next future.

And, secondly, I am always chairing an ethics committee, which has been created at the level of the European Union, but it is a small body. It is an advisory body, which comprises nine members from nine countries of the European Union, and the mission is different because it is a more-- it is directly related to the legislative competence of the European Union. As you know, more and more directive and regulations have to do with biotechnology and each time the European Union wants to legislate in a field, such as transgenic animals, they ask our advice and we have been asked to say a word about cloning and, of course, we had -- at that time, we made our opinion, the 28th of May. So, your committee was the first one to say something about it. So, we made an opinion that you will have because your president, Mr. Shapiro, has had it.

At present we have been asked to say a word about the research program, which is going to be launched for five years from 1998 to 2002  at the level of the European Union in every field. The research program, which is financed by the European Community and we have been asked to say a word about the ethical issues and legal issues of the research program in the field of biotechnology and biomedicine.

So, bioethics is my dossers(?) -- you say that in English? I am sure that I am going to learn a lot from you.

DR. MURRAY: Well, we are delighted that you could come and to initiate this dialogue. We are talking about human tissue samples, DNA research. This is the Genetics Subcommittee of the National Bioethics Advisory Commission. The Human Subjects Subcommittee is meeting next door.This subcommittee has on its agenda also reports on genetic privacy and discrimination and gene patenting, but we haven't begun work on those two easy issues yet. So, if it is all right with you, we will just continue hearing from Bartha.

DR. KNOPPERS: If it is all right with you, Tom, can we take five more minutes and ask Noelle to say what is happening with the UNESCO declaration. I don't have to leave until 4:30, but maybe it would be nice for the people here around the room to know the relationship between the actual state of the declaration and what is in -- I mean, I did -- my paper does cover -- every section starts with DNF(?) the declaration. So, there is -- but maybe what is happening in November or

DR. MURRAY: Please.

MADAME LENOIR: Well, the drafting of the declaration was a bit specific because it is an academy body, in fact, the international committee and which was, apart from any pressure of any government, which drafted. The role of Bartha and Edgar was very, very decisive. So, the draft prepared by the committee was submitted to a committee of government and experts, which is a normal diplomatic process because you have two -- when an international organization is drafting an instrument, you have two stages. The first one is to gather nationa delegations and your country has a delegation, which is represented by Eric(?) here and he was positive and very helpful because the German had certain very strong position opposed to biotechnology, as you know.

So, this committee had a meeting in July and made a text, which we present the consensus to be more precise. We compromise. It is a consensus but it is, in fact, a compromise. Countries were very much opposed to biotechnology and those were much more in favor, the U.K., the United States, Japan. So, it is a compromise, which represents the balance which has been reached among the states of all nations. Then this text is going to be submitted to the General Assembly of the member states of UNESCO in November 1997.

So, normally, it is going to be adopted by consensus with the possibly reservations from states, but normally it is a final text and I  must say that I hope it is a final text because if it is going to be changed, the change will be certainly in favor of prohibitions and we thought that a text of that kind, which is going to be a reference and which must adapt to the change of science and to the change of mentality in the long term, has to have this balanced approach considering -- and  this is quite a novelty in the text in that field considering that freedom of research has to do with human rights.

If freedom of research is established in these states as the human rights having to do with the freedom of sorts, which gives another view. Of course, it seems symbolical, but in law we know that symbols can have a parational(?) effect when they are applied in concrete cases.

So, this is the main -- input of the text is the balanced approach. Of course, precise provisions can -- and we have this Article 4, which is very ambiguous, but, in fact, when you examine the different provisions, you can have different comments.

But the main idea is to give a certain stability to this field, to say that, you know, research is an activity, which is considered specifically by the international community at the level of the states and that research has to be protected and fostered and at the same time individual freedom and the concerns of public opinion have to be taken into account, but the balance is very important to change and even to protect politicians when they have to react urgently to the public concern, as was the case with the cloning recent affair and as is to be the case, perhaps, with another discovery.

So, that is the points. Some articles can be controversial, but I think that on the whole it is the main stream that we tried to -- with great difficulty because, you know, it is a field in which intervene cultures and sometimes even religions. So, it is much more difficult to draft a text of this kind having to do not only with human rights, but also with economy, finance, money and industry.

So, the mixture is a very, very difficult one.

DR. MURRAY: How long has this document been in preparation?

MADAME LENOIR: Well, we have been working during four years, but, in fact, because we consulted hundreds of -- five hundreds or thousands of people, you know. I cannot say that we took into account every remarks because, of course, there is a -- I am struck -- I don't want to be too long, but I am struck by the lack of information of people of the elite of the different nation, which are not involved in science.

I think that they have almost the same level of information -- you know, I made a conference recently before people from different supreme courts, you know, and they don't know about that even if they are very highly educated. They don't know more than -- it is difficult. They don't know more than I do with my Internet, which is a very difficult challenge for me, you know. That is the problem.

DR. MURRAY: If you would be patient and I want to give the opportunity to other members of the commission and the subcommittee if they had any questions about international activities for you.

DR. LO: Let me just ask you, as you presented your recommendations, you had a balance between intellectual freedom, the right to scientific inquiry and I guess the protection of individual  subjects of research. As I understand, you placed a very high emphasis on intellectual freedom.

Where does that come from? Is that -- I mean, how did you work out that that was given more weight than the protection of human subjects? In this country, there are a lot of people that feel that the primary thing should be to make sure that no harm is done to people whose tissue is used in this research.

MADAME LENOIR: Well, we say that, of course. The problem of rights is a problem of conciliation, reconcile different values and conflict. But we thought that -- we said in the text that the human being is primary, of course, and it is not because research and you know that bioethics was born during the Nuremberg trial, more or less, you know.

We say that that the human being is primary and it is not because the research is useful that we can get rid of the right of human beings,  their suffering, their agreement, their consent. Of course, the principle is that the human being is to be respected before anything else, but we thought that freedom of thought, you know, is a value, which is similar to any other liberty. Thatis, you know, in the conciliation, of course, human being is first, but we -- I think that in your legislation, you have freedom of expression and you have also the protection of the -- in privacy. So, when they are in conflict, I think that sometimes privacy -- you know, sometimes privacy is primary vis-a-vis freedom of expression of the press sometimes because you have a private life.

But freedom of expression and privacy are two rights, which are respectfully both. You know, this is the meaning. When there is conflict, of course, you know --

DR. MURRAY: If I heard you correctly, what I understood you to say is that whereas the protection and respect of persons have always been widely recognized as a principle. The notion that scientific research was a form of a kind of free expression or freedom of speech, freedom of inquiry, that hadn't been so formally articulated.

MADAME LENOIR: Well, of course, I don't like to give examples coming from my country, but to give you a concrete example -- I was drafter of the opinion. We made a judgment in 1994 about a legislation, which was about fostering first language in culture. And there was a provision in the law, which states that if a researcher publishes its results, he or she must publish in French, in English, but also in French. Otherwise, there is no public funding. It was to protect the French. So, we say, first of all, freedom of research derives from -- I  am sorry to give this example, but, you know -- freedom of research derives from freedom of expression, which is said in the Declaration of Human Rights of 1789, which we applied in now the French Revolution, which says that freedom of explanation is one of the most precious liberty of mankind.

So, we said freedom of research divides from freedom of expression, which is the most precious and we said it is contrary to the freedom of research, which has a constitutional value since 1789 through  freedom of -- to limit the grants to the researchers, according to the language, the use, because it has nothing to do with the scientific quality of the research. It has to do with another purpose, which is the French language.

But now, you know, our minister of education declared one week ago that English is no more a foreign language in France.

So, that is the punch, you know. We say that -- we make the -and the German did also. They associate freedom with research. I studied the case laws of other countries because you had in certain countries always in conflict, first of all, between religion and  research and then between the state and research, you know, and the  research community gets more and more autonomous vis-a-vis the other powers and now there is a problem of economy and research and public opinion. It is another challenge, you know.

So, we had to reaffirm the problem, the principle of freedom and research in that context and I think that in the present context of the great tension between the scientific community, industry and public opinion, it is morally appropriate to reaffirm this activity as a free activity. So, that is why we have several articles.

But, of course, it is not because -- you know, freedom is neither general nor absolute. So, it is not because you are free that you can  breach other very important values. But in the conflict of values we  thought -- and it was approved by the country, I think. They were less prepared to approve other things, but I think that the balanced approach is accepted now.

DR. MURRAY: Thank you.