Editors: Michio Okamoto, M.D., Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
President, IBC, UNESCO
1.1 . Access To The Knowledge Of The Human Genome: A Scientific Revolution.
It has become a cliché to notice that in less than half a century the pace of biology and genetics has accelerated to dizzying proportions. After decades of painstaking research, seemingly disparate paths into the sciences of molecular biology, chemistry, physics, biology and genetics have converged. One must also admit that genetics made this amazing progress largely thanks to electronics and robotics.
The different stages of the advancement of genetics are perfectly well known. Let me just remind you of the three main stages marked by noticeable discoveries or by spectacular initiatives:
1. In 1953, at the University of Cambridge in England, two brilliant young researchers, James Watson and Francis Crick, discovered the DNA. In other terms, they identified the molecular messenger of each individual's inheritance, as carrying its information within the spirals of a double helix.
2. The second stage can be dated back to the 70's, when was put into practice genetic engineering. This technique led to the process of "recombination", allowing to shuffle the genes into new combinations which do not exist naturally. This discovery is as important as the previous one. Most certainly, since the beginning of human civilization, man has constantly been modifying the varieties of plants and farm animals in the crop and stockbreeding sectors, using conventional methods such as selection, crossbreeding and hybridization. But the new biotechnological methods have a peculiarity which make them radically differ from the traditional ones: Indeed, genetic information (DNA), can be transferred across species and even kingdom boundaries.
3. The third stage of progress in genetics is not linked to a specific discovery. It is related to the launching of probably the most ambitious scientific project since the Apollo program aimed at landing a man on the moon. I am alluding to the Human Genome Project called by its proponents " the Holy Grail of modern biology". Initiated in the USA in 1989, under the influence of Watson, first director of the lead agency (the National Center for Human Genome Research set up by the NIH), this project has been then implemented at a national level in most of the industrialized countries. For instance, in spite of the reserve, if not the opposition, of the Greens, such a project has been launched some weeks ago by decision of the German government.
Furthermore, international organizations have been established in order to coordinate the works of the different laboratories all over the world. Among them, HUGO and New Frontiers are specially important and dynamic. You know perfectly well of the latter, the origin of which is due to a Japanese initiative. In a logical way, the economists and the industrialists are closely looking at the commercial possibilities opened up by the genome projects.
On one hand, the HGP raises new expectations for industries willing to benefit from the new products derived from new biotechnological methods. But, on the other hand, it provoked an unprecedented debate about the ethical, legal and social issues (ELSI) of genetics, especially medical genetics. Astonishingly, it has not been the case at the time of the birth of the atomic age. With genetics, it is different. Why?
Probably because of the consciousness of the dangers of eugenics dramatically illustrated by the atrocities perpetrated on behalf of the Nazi regime. In my opinion, the ethical movement has indeed much to do with the disclosure after the war, on the occasion of the Nuremberg trial, of the involvement of human geneticists (as well as psychiatrists) in the crimes committed in Nazi concentration camps, with people being submitted to tortures meant to serve as scientific experiments.
Remember that the first important document in bioethics established at an international level is the so-called "Code of Nuremberg" made public by the World Medical Association. And remember that this document enunciates the ethical principles which are still now considered as fundamental, being based on the idea that man is a subject and can in no case be regarded as a mere object of science. The principle of "informed consent" or "informed choice" is notably one the main principles mentioned in the Code of Nuremberg.
The ethical movement is undoubtedly one the most outstanding phenomena of the end of the present century. It expresses the worries of a society, the future of which seems uncertain, in a very unstable world. As Franćois Mitterrand, former President of the French Republic, said at the first meeting of the National French Committee of Ethics he created in 1983, " Science goes faster than society ". But, in my view, bioethics has a profound meaning which is the search of moral values in a society which is more and more dominated by science and technology, and thus by money. Again, one can observe three phases in the development of the bioethics movement.
1. The first one is not the less surprising. Indeed, it reveals the real commitment of geneticists in the questioning of their own scientific practice. This questioning, as far as science at large is concerned, is notably illustrated by the creation of the MURS (Universal Movement for the Responsibility of the scientists), promoted by the French Nobel Prize Jean Dausset and now by Professors Fujiki and Okamoto in Japan.
But an unusual event also deserves a special notice with respect to the researchers' ethical concern. This event happened at a scientific congress which took place in Azilomar (USA) in 1975, just after genetic engineering has firstly been experienced. The scientists, then gathered to exchange their views about this new and revolutionary technique, showed worried about the unforeseeable consequences of the production of genetically modified organisms (GMO), according to the possible risks induced for human health and the environment. So they purely and simply decided a moratorium on their research. That kind of procedure (moratorium) has become rather common in the scientific sphere. But at this period, it was totally original.
The moratorium at stake was strictly related to safety considerations. Furthermore, it was soon removed, i.e. after one year. Nevertheless, it seems to be the first time in history that a new technique is like this stopped at its very beginning. In addition, it conveys the idea that scientists have the duty to ensure the safety of their practice and that they are now aware of their responsibility.
2. Scientists were major agents of bioethics, devoting more and more of their discussions to examine the social implications of new genetics, beyond the sole issue of risk assessment, therefore the debate rapidly opened to the public at large, through the media.
Bioethics, in a way which is unprecedented in the history of science, is the more astounding that it takes shape in peculiar bodies, named "Ethics Committees "(EC). Originally, EC appeared almost spontaneously. They were created on and after the 60's in the USA where editors of scientific magazines began to require from the researchers that they submit the results of their research to the judgment of ethics committees before claiming the possibility to publish them. At that time, EC comprised only scientists in charge of reviewing the works of their peers.
During the same period, EC were set up in hospitals and clinics in view of helping doctors to face difficult decisions to be made, especially at the beginning of life (abortion...) or at the end (interruption of medical treatment, euthanasia...). Those committees, which still exist as the former ones, are logically pluridisplinary. They are not only made up of medical practitioners, but also of philosophers and lawyers. The role of the lawyers is justified in the USA by the frequency of lawsuits against doctors on the most various and sometimes extravagant grounds.
But then other kinds of EC were set up without such utilitarian aims. They were just bound to be forum where to discuss the ethical issues generated by advances in modern biology.
This is the case of the National Ethics Committees created by law in different countries, especially in Western as well as Eastern Europe. France was the first country to create such a national body in 1983. The last one was set up in Tunisia a few weeks ago. The German Parliament is at present contemplating the possibility to create a National Ethics Committee before the end of this years.
To deserve the label of "Ethics Committee", the body must comply with three main conditions:
- To be pluridisplinary;
- To be independent from any power, political, economic or scientific,
- To reflect a diversity of opinions and thoughts.
Generally, EC have only consultative competence. To take the example of France, the CCNE has played a major role in identifying the ethical issues of new scientific and medical practices, and although not followed on every point by parliament when recent legislation was adopted in 1994, its recommendations served as references and thus much clarified the parliamentary debate.
3. Indeed, further steps are being made due to the fact that bioethics results more and more often in binding regulations. The laws concern either the beginning of life (new reproductive technologies, prenatal diagnosis including preimplantation diagnosis, research on embryos), genetic testing and screening, gene therapy, organ transplant, graft of tissues, experiments involving human beings. They more rarely deal with the end of life (Netherlands is the only country in Europe which recognizes the legacy of euthanasia under some strict conditions in a law adopted in 1994).
Several laws on bioethics have been voted all over the world along the past decade. Recently, even constitutional laws have been adopted. One can quote the Swiss Constitution in 1992, and certain Constitutions of Latin- American countries.
Several Supreme Courts have also ruled on bioethics. Let me mention the French Constitutional Court which reviewed in 1994 two French laws on bioethics just after they have been adopted by Parliament. The French Court has in fact established human dignity for the first time, considering that this key principle derives from the Preamble to the 1946 Constitution to which the current Constitution refers. This Preamble solemnly asserts the will of the French people to combat all regimes that attempt to enslave and degrade human beings. (This statement has been made in reaction against the Nazi and Fascist regimes and it thus emphasizes the links between bioethics and the refusal of any totalitarian policy based on eugenics).
2.1. THE REASONS OF THIS STRONG AND ANCIENT INVOLVEMENT
2.1.1. The specificity of UNESCO as belonging to the UN system.
- UNESCO is the only Organization of the UN system to combine the promotion of Education, Science and Culture, a trilogy which reflects the basic approach of the ethics debate.
- UNESCO, under the terms of its Constitution, has to safeguard the cultural world's heritage, which is made of the common knowledge of mankind as well as of the common values of the international community;
- UNESCO is the only Organization of the UN system to have a special role in fostering the development of science in order to enable the people of the world to benefit from its advancement.
2.1.2. The North/South dimension of UNESCO.
The transcultural mission of UNESCO explains why its interest in bioethics has long been so strong. Indeed, to involve the developing countries in the debate is in itself an ethical imperative. The reasons are twofold:
1. Because bioethics has much to do with universal human rights, when one thinks especially of the new forms of discrimination that can derive from certain interpretations or use of genetic knowledge of individuals.
In line with this view, the UN Commission on Human Rights adopted, in March 1993, a resolution regarding the need for international cooperation in order to ensure that mankind as a whole benefit from the life sciences, and to prevent them being used for any purpose other than the good of humanity. The resolution invites Governments and special agencies, and specifically UNESCO to carry out activities in this direction.
In the same way, the World Conference on Human Rights (Declaration and Program adopted in June 1993 in Vienna ), called by the UNO stated: "Everyone has the right to take advantage of the fruits of scientific progress and its applications. Seeing that certain progress, especially in the biomedical science and life sciences as well as in the techniques of information, could have disastrous consequences on the integrity, the dignity of the individual and the exercise of his rights, the Conference is asking the States to cooperate in order to see to it that the rights and dignity of the human person be fully respected in this area of universal interest".
2. The second reason of UNESCO's involvement in bioethics in its North/South dimension is related to the preoccupation to enhance substainability in developed countries, as one must admit that today the fruits of progress are so badly shared that science appears often as making the poor poorer, and the rich richer.
This feeling was quite well reflected in the discussions at the time of the preparation of the UN Convention on Biodiversity signed in Rio in 1992. The developing countries showed their will to exercise their sovereignty on their own genetic resources in view of making profit out of their exploitation. This claim expresses the idea that economic considerations can no longer be separated from social or ethical ones. This is precisely the aim of UNESCO to try to reconcile both.
2.2.1. The animation of the international ethics debate.
UNESCO's interest in bioethics dates from the very beginning of genetic engineering. UNESCO held a symposium in Madrid as soon as in 1970 with the Spanish Council for Scientific Research. UNESCO has since stepped up other diverse initiatives of the same kind:
- Organizing symposia ( 40th anniversary of the discovery of the double helix of DNA celebrated in Paris with 20 prominent Nobel Prize winners);
- Drafting recommendations;
- Publishing books (Biology and Ethics by Bruno Ribes in 1978; Texts of the papers and discussions on Bioethique et Cultures in 1991; Also in 1991, texts of the discussions at the Moscow meeting on Biomedical Technology; Biomedical Technology and Human Rights by Eugene Brody in 1993; Regards sur la Biologie contemporaine by Franćois Gros in 1994 and perhaps soon texts of the discussions at the Paris meeting of the International Association of Physiologists on "Biology and Respect to Life").
2.2.2. UNESCO's Human Genome Program.
The above activities were accompanied by a scientific cooperation lead by Professor Santiago Grisolia from Spain, who in 1989 was appointed Chairman of the UNESCO's Scientific Coordination Committee on the Human Genome Project. Apart from setting up a structure for cooperation, this major project has resulted in the organization of multidisciplinary meetings and practical actions (Training, fellowship...).
A first South/North Conference was held in Caxambu (Brazil) in 1992. The declaration on the Patenting of Partial Human DNA Sequences, which results from the work of the Conference, testifies that the issues raised by genetics are henceforth unavoidably a world matter. It stressed the fact that it is essential to achieve a balance between the protection of intellectual property rights and the free exchange of information and materials needed for optimal international collaboration in carrying out the HGP.
The Second South/ North was held in Beijing in November 1994, demonstrating that developing countries are participating meaningfully in the HGP, even if there are great differences between the different countries.
3.1. THE STRUCTURE OF THE IBC AND ITS FUNCTIONING
3.1.1. The originality of the Status of the IBC.
Federico Mayor, Director-general of UNESCO, thought necessary a further stage in emphasizing UNESCO's federative role in bioethics. To obtain world recognition of the particular suitability of the Organization as the place in which a synthesis of the ethical debate can be made, he had the idea to set up an International Bioethics Committee, the first and unique kind of institution in the world, as a driving force for discussion and action.
The IBC inaugurated on 15 September 1993. But its establishment was preceded by a one year period of preparatory groundwork by a Scientific and Technical Orientation Group, made of scientists coming from all over the world. The conclusions reached by this Group were twofold:
- The necessity to have an international and open debate on the most advanced developments of life sciences in order to be able to anticipate the social changes induced by the fantastic progress in that field;
- The suitability of the creation of an international pluridisciplinary body to animate the debate and strive to reach to an agreement on what can be the basis of common ethical principles, inspired by the "culture of peace".
With this spirit in mind, the IBC was set up by the General Director of UNESCO first and foremost as a forum for the exchange of ideas and debate. The members are appointed by F. Mayor on a strictly personal basis, according to the role they play in the fields directly or indirectly linked to bioethics. But most of them are not specialists in bioethics, and may have never dealt with it.
The IBC comprises 50 members of 40 different nationalities (Professor Fujiki is our Deputy Chairman, and Professor Saito, who is a famous jurist specialized in international law is one of the members). It is pluridisciplinary, and has the peculiarity to give place to disciplines reflecting the specific preoccupations of the developing world: Nutrition, Demography, Anthropology dealing with the study of isolated or ancient populations whose rights have long been denied, for instance). There are also of course a lot of biologists, geneticists, lawyers, philosophers, sociologists, and journalists as well. The IBC is pluricultural according to the specific vocation of UNESCO. It reflects a diversity of opinions, but no one represents a particular philosophical, political or religious thought. Indeed, the IBC is independent from any power, political or economic. It does not express official views of Governments or of other public or private Institution. It's its strength to be the place where everyone can speak freely and in public. This independence is essential to the ethical process which excludes all submission to a dogma.
3.1.2. The functioning of the IBC.
The IBC has got a bureau which regularly meet to organize the work of the year. It has also close relationship with many correspondents at an international level: Governmental and non-Governmental organizations, Universities, Academies, Ethics Committees. In this respect, one must notice that Georges Kutukdjian, the General Secretary of the IBC, director of the bioethics unit of UNESCO, has conducted a wide-ranging survey among its Members States in a bid to identify the main national EC or other similar bodies, to associate them with the work of the IBC and to encourage the establishment of an international network of national and local EC.
The IBC has also privileged links with UNESCO National Commissions. To provide information on human genome research and its application and on related bioethical publications, UNESCOs Bioethics Unit has set up a database which currently comprises thousands of references. This database is accessible to all the correspondents of the IBC, in addition to the IBC itself.
Parallel to this tool, the IBC has realized in 1994 a film entitled "Genome: Odyssey of the Species", which has been distributed throughout its network.
Last but not least, the IBC publishes a newsletter " Spotlight on Ethics".
The action of the IBC is aimed at three directions corresponding to its triple vocation:
- To be a forum for exchange and information;
- To be place of awakening and promotion of international conscience which supposes practical activities in collaboration with diverse correspondents;
- To be a body of proposition for the elaboration of an international instrument about the protection of the human genome.
The third mission needs to be analyzed apart. What about the two other missions?
3.2.1. A Forum for exchange and information.
It is certainly the main goal of the IBC. It is first illustrated by the intellectual freedom of the discussions which take place during the annual meetings of the IBC in September in Paris.
Those meetings are public. The Press is invited. All the correspondents of the IBC are as well asked to participate in the debate, even in giving a written statement which is diffused to the persons attending these meetings. But I must insist on the fact that the IBC is really a working body. Each of its members writes a personal contribution concerning one of the subjects listed on the agenda of each annual meeting.
The subjects are technical and scientific, the idea being that it would be useless to discuss about the implications of research practices and of their applications without knowing precisely the current state of advance in research at world level, without reviewing their application notably in medicine and broadly, in other areas of social life, and in a general way to contemplate the future of life sciences according to the foreseeable progress in biology and genetics.
I cite the different and captivating reports examined in 1994 and 1995.
- 1994: Genetic testing and screening (David Shapiro); Gene therapy (Harold Edgar ).
- 1995: Genetic counselling (Michel Revel and Arthur Robinson). Ethics and Neurosciences (Jean- Didier Vincent). Bioethics and Population Genetics (Heng Leng Chee, Laila El-Hamamsi, John Fleming, Norio Fujiki, Genoveva Keyeux, Bartha Knoppers, and Darryl Macer)
It is important to indicate that the IBC do not make proposals or recommendations on those different subjects. The IBC, because of its very opened and free composition, does not pretend to be an authority with moral power in the field of scientific research. It is only the place where to concentrate the diverse elements of a pluricultural and pluridisciplinary debate, at the highest level.
In 1996, the IBC could envisage, if its Bureau agrees, to contemplate the extremely delicate question of the relationship between industry and science which includes the patent's issue, and the question of the diffusion of scientific knowledge, through the relationship between science and the media. In addition to this role of animation of an international ethics debate, the IBC participate in international Seminars dealing with the most controversial issues. I quote two Seminars:
- The first one, on Legal Systems of Protection of Research Results in Genetics, is organized by the Bioethics Unit and the Division of Books and Copyrights of UNESCO, with notably the participation of Mister Teruo Doi, Professor of law in Japan.
- The second workshop, on Population Genetics, is coorganized by the IBC, ICSU and CIOMS. Population Genetics raises many ethical questions as it is directed in priority towards populations (Indians of North and South America, Aborigines of Australia, Celts in the North of England...) whose rights have not been safeguarded. This explains why they seem to distrust some of the research currently performed, especially the very controversial "Human Genome Diversity Project" initiated by Professor Luigi Cavalli-Sforza [see Nature 379 (1996) 11].
The main question is: How is it possible to protect population groups against the violation of their right to information and choice, as well as their right to the confidentiality of their individual genetic information, if used as subjects of comparative population genetics research, of genetic epidemiology to gauge the prevalence of certain shared genetic characteristics, or of large scale experiments testing new biotechnologies and therapies?
3.2.2. Practical activities of the IBC.
The IBC is not only a Forum of discussion. It fosters concrete activities in collaboration with different bodies or governments.
One of its purposes is to foster actions in the field of education. I limit myself to quote a few examples of those actions. The first UNESCO Chair of Bioethics has been created at the Law and Social Sciences Faculty of the University of Buenos-Aires in June 1994. A program of exchange of University teachers in Bioethics has been established between UNESCO and the Mexican Government under the auspices of the IBC. UNESCO is cooperating with the University of Paris, the French National Committee of Ethics and the Ministry of Research to in high school educational programs on bioethics.
At each annual meeting of the IBC, a survey is examined launched by the IBC itself concerning the way bioethics is possibly taught as a discipline on its own at University or even at school. Two surveys have so been performed in Europe (Professor Gerin), and in Latin-America (Ruben Lisker and Lidia Vidal-Rioja). Their promising results have been disclosed at the annual meetings of the IBC. It will be especially interesting to perform such a survey in Japan.
Other forms of cooperation have been defined with several of the correspondents of the IBC. National Parliaments as expression of the society's choices are in permanent contact with the IBC. At its third session, the IBC organized a Round table on" The Role of Parliaments in Bioethics" which was opened by the President of the French National Assembly and chaired by the Editor-in-Chief of the well known Journal Nature. Several members of Parliaments participated in this round table.
The IBC also drafted the background paper " Bioethics and its implications for Human Rights Protection" for the 93rd Conference of the Inter-Parliamentary Union, held in Madrid in March 1995. The final resolution adopted by this Governmental Organization " calls on Governments and Parliaments to provide their citizens with exact information on issues relating to bioethics, particularly in the field of human biology and medicine, and encourages an ongoing debate on these issues". It also "urges States to set up national EC... in cooperation with the IBC, if they wish".
There are close links between the IBC and the EC existing in different countries. For instance, members of the IBC are often invited to participate in the annual meetings of National EC: It has been the case of the French one, the Portuguese one, the Mexican one...
Different steps have been made to help southern countries to set up National Committees: The IBC envisages an agreement with the Portuguese Committee to foster the creation of such National EC in lusophone Africa. A government's bill has been elaborated in cooperation with Excel. H. Gros Espiell, the Ambassador of Uruguay in France who is one of the Deputy Chairman of the IBC, in Uruguay in view of the setting up of a National EC in this country. A big meeting gathering representatives of the National Committees already existing in the world could be organized under the auspices of the IBC in the next few years.
As Darryl Macer said, (he is Professor of biology coming from New-Zealand and living in Japan), in the excellent report he made for the IBC in 1994, "Bioethics is not just an academic endeavour or an applied part of philosophical ethics, it is rooted in the daily life and attitudes of all people". This fully justifies the concrete activities of the IBC in different Southern countries.
4.1. THE CHOICE OF THE FORMULA OF A DECLARATION
4.1.1. The juridical mandate of the IBC.
The General conference of UNESCO gave indirectly to the IBC a juridical mandate, inviting the General Director of UNESCO, in a Resolution adopted in November 1993, « to prepare an international instrument on the protection of the human genome ».
This decision of the 183 Members States of UNESCO confirms the present trend to legislate at an international level in the field of Bioethics. Several initiatives have been taken recently. To take the example of what is envisaged at a regional level, in Europe, one can notice that the approaches can greatly differ.
The Council of Europe (34 Member States) has announced in July 1994 its draft Outline Convention on Bioethics. This draft « For the Protection of Human Rights and Dignity of Human Being Regarding Biological and Medical Applications » especially focuses on the regulation of Biomedical Practices. It deals namely with gene therapy, research on embryos, experimentation involving human subjects...The Assembly of the Council of Europe has discussed of this draft, and the main questions raised concerned the principle of informed consent which is not applicable to unconscious persons or persons with mental illness, and the possibility to admit or not research on embryos.
The European Community, although historically limited to an economic role, has wished to give an ethical dimension to activities involving biotechnologies, considered a key sector. That's how the European Commission decided to create in 1991 a « Group of Advisers on Ethical Implications of Biotechnology ». This group examines every draft regulation concerning biotechnology and make recommendations in view of allowing the European Commission to better take into account the ethical aspects of the activity concerned. It is by a case by case approach that the Group progressively defines some sort of ethical guidelines. Its task is the more delicate that the bioethics debate is becoming very hot, after the European Parliament's refusal to approve a draft directive related to the « intellectual property rights on biotechnological inventions », i.e. the problem of patents. The IBC approach is different from what is done by the two European Organizations.
The aim of UNESCO is essentially to enunciate general principles applicable in every place in the world and acceptable for the international community. In other terms, the question is to express fundamental values which could apply to different concrete situations, without pretending to lay down rules concerning specific medical or scientific practices.
The Legal Commission of the IBC, animated by the Ambassador to Uruguay in France, has worked in view of ensuring that the instrument proposed by the IBC to the Director-General of the Organization should be applicable in the very long term.
4.1.2. Why a Declaration?
The preliminary question was to determine the form of the document. Will it be a Treaty, a Recommendation, or a Declaration? The Legal Commission started to work on the basis of its precedent, notably at the UN and at UNESCO. Two observations were made:
- Prudence and progressivity are indispensable virtues when elaborating international instruments requiring a large agreement. Remember that in 1948, when the Universal Declaration on Human Rights was elaborated, the international Community comprised 58 countries, as it comprises nowadays almost 200 countries.
- In any case, it is usual in the UN system to begin with preparing a Declaration which is not binding, as a first step. Then, the Declaration can be followed by a real Convention which has the value of a constraining legislation.
For example, the UDHR of 1948 was followed in 1966 of the two Pacts of the UN concerning the civil and political Rights, on one hand, and the economic, social and cultural Rights, on the other hand.
The idea of the IBC is to propose a Declaration which could serve as a reference, a pattern or a source of inspiration to the States willing to adopt legislation on bioethics. The aim is also to have a document sensitizing the public opinion as well as the decision-makers.
The procedure chosen by the IBC to prepare the Declaration reflects the desire of the IBC, according to the wish of F. Mayor, to use it as an instrument of intercultural dialogue. The IBC considered its legal mandate as a marvelous opportunity to enlarge the discussions about what could be nowadays the common values of our technoscientific civilization.
That's why it decided to work openly and to submit the outline drafted by its Legal Commission to a vast and informal consultation all over the world. The draft was sent to about 300 bodies or persons: International Institutions, Universities, Academies, prominent personalities in the different intellectual circles...
Many answers were sent back to the Committee which has begun to analyze them. A synthesis of the answers was presented to the meeting of last September in Paris. It is a precious document comparable to an international survey giving a precise idea of the variety of opinions in the world, but revealing also what all cultures have in common.
4.2.1. The Human Genome as a « Common Heritage of Humanity ».(CHH)
The draft contains a Preamble and six parts. The Preamble is essential for a declaration because quoting all the international precedents ( Conventions, Declarations, Recommendations), it is a determining factor for the interpretation of the provisions of the Declaration. If you read this Preamble, you notice that many international are now applicable to bioethics as the conventions against racial or sexist discrimination, the conventions on human Rights...
In this context, the main originality of the draft Declaration for the Protection of the human Genome is to name it as a CHH. This notion is undoubtedly mysterious for whom is not jurist.
Certain parts of the earth, the sea or outer space, and certain properties, like the natural and cultural world heritage covered by the UNESCO Convention of 1972, are now considered by international law to merit protection by the whole of humanity. This is the meaning of the concept of CHH applied to the human genome thus regarded symbolically as representing the human species and its specific interest to be protected even against the dangers created by man. It also means that humanity and every individual are both subjects of international law.
But the notion is difficult to understand. Some commentators have pointed out that in the past, the CHH argument has been used to open up areas for economic exploitation by dominant countries (plant genetic resources). Some other persons have considered that it precluded patentability on human genes, which is not the intention of the Declaration. The debate is still very opened.
4.2.2. The provisions of the Declaration.
The main provisions are aimed at reasserting the rights and liberties of every individual and population group in case of intervention on the human genome. The basic principle in light of this, is human dignity which must in any case prevail on any scientific progress. A way to say that scientific progress does not automatically means human progress.
- On this basis, all unjust discriminations related to genetic characteristics are forbidden.
- No research nor intervention on the human genome can be practiced without the free consent of the person in question.
- A principle of responsibility in case of tort, due to an intervention on the genome of a person is also asserted, and could concern the experiments performed by companies or labs of industrialized countries in the third world.
A part of the declaration refers to the rights of researchers ( freedom of research is regarded as a human right) and to their obligations. The Declaration emphasizes the peculiar responsibility that lies on researchers.
The principle of solidarity is also strongly reaffirmed at a time when rich countries having financial and social difficulties withhold their assistance to the poor countries. This principle also means that the collectivity has the duty to help people who have disabilities, to help them and to recognize their rights to share the fruits of progress.
The last part of the Declaration deals with the international cooperation in all the fields appropriate ( Education, information, setting up of EC if needed...). If one had to sum up what is essential in the draft Declaration, he or she, in my opinion, should insist on the fact that this document wants to warn of the dangers of reductionism that would judge an individual or a population in terms of his or her genetic characteristics.
As Primo Levi said, « our future is not written...and the human condition is incompatible with certainty ».This phrase is important as the old trend of eugenics seems to reappear with the so called research on the gene of homosexuality, of intelligence, and even of poverty. What is fascinating in bioethics is that it acts as a catalyst and a revealer of the tensions in society.
Its disadvantage is perhaps to give the impression that biology is the only science which creates problems although the real question is how to ensure that modernity is not on conflict with the essential human values of all societies.
September 1995 version
March 1996 version
Final version approved by UNESCO in 1997
Mr. Georges Kutukdjian,
Director, Bioethics Unit (SHS), UNESCO,
1 rue Miollis, 75732 Paris Cedex 15, FRANCE.