conference proceedings of congress International Bioethics 1999. Bioethics and dignity in a pluralistic society

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lecture opening

Prof. Georges B. Kutukdjan
Director of UNESCO's Division of Ethics of Science and Technology

I. Introduction

Today, biology is immersed in the process of transforming all aspects of our lives, both public and private. To quote a French philosopher, we could say that if the 20th century was the century of the knowledge of the dead subject , the 21st century will undoubtedly be the century of the knowledge of the living subject , and will lead us to penetrate the mysteries of life itself.

Awareness of the human and social implications of the life and health sciences process is one of the new features characterising the second half of the 20th century. Thus, the world of scientific research now considers ethical reflection as an integral part of its development, which has far-reaching implications.

These ethics go beyond the codes of conduct specific to the various forms of professional internship . It involves reflection on changes in society and even global balances. It thus forms the basis for a broad public discussion on the options for the future, created through the scientific development , and on how to ensure informed participation of citizens.

We must recognise that the concept of scientific and technological progress as source of profit per se is changing today. This reflects the concern of a world that seeks a balance between nature and development, harmony between the individual and the social, a world that seeks the protection of the human species. We see this clearly in the expectations placed on science. From this derives the need to reconcile the consequences of science with freedom in the research which in turn stems from freedom of thought.

These considerations led Mr Federico Mayor, Director General of UNESCO, to propose to the General Assembly in 1993 the preparation of an international instrument on the Human Genome. The International Bioethics committee worked from 1993 to 1996 on this topic and elaborated a document which was presented as the "Universal Declaration on the Human Genome and Human Rights", adopted unanimously by its 186 members on 11 November 1997 and adopted on 9 December 1998 by the United Nations General Assembly, on the occasion of the 50th anniversary of the Universal Declaration of Human Rights. Genetics human genome and Human Rights.

Molecular biology and Genetics allow man to foresee the very essence of the living and to gain a deeper understanding of the process of programming, differentiation, repair, renewal and decay of living beings, without yet being able to master these mechanisms.

The research Genetics has reached an important milestone with the convergence of molecular biology, processing and manufacturing data and robotics. Over the last ten years or so, this convergence has enabled the physical and genetic mapping of the genome on a large scale. Genome sequencing remains an indispensable tool to locate and identify genes involved in diseases, such as hereditary diseases or certain cancers, with a genetic factor.

Does research produce unexplored questions within the framework of project of the Human Genome?

There are different ethical questions that arise with regard to this relationship:

- the definition of the fundamental knowledge status of the genome: the controversy over the patenting of partial DNA sequences underlines the urgency of obtaining internationally compatible solutions, in the absence of which a certain work of research may be disrupted.

- The risk of labelling genes as "good" or "bad": what is a defective gene, and can the alteration of a gene be the basis for eliminating such a mutation? More and more geneticists are discovering that certain mutations in genes are in fact forms of protection against infectious and other diseases.

- Even newer than genetic testing, Genetics therapy also raises great concerns and doubts.

- It is not difficult to refer here to the production of genetically modified food by biotechnological processes. The question remains open: can it combat the scourge of malnutrition in developing countries development, or will it instead lead to a further separation in the level of development?

II. The Universal Declaration on the Human Genome and Human Rights

The Universal Declaration on the Human Genome and Human Rights addresses these and several other issues in a comprehensive and coherent manner and provides governments and legislators around the world with principles to guide policy actions and support educational measures and information. The Declaration is the first universal instrument in the field of biology and Genetics. goal The Declaration's first aim is to guarantee the freedom of research in the Genetics and application of such research, while respecting human dignity and fundamental rights and freedoms. In this legal document, the concept of human genome refers both to the individual constitution Genetics - in its double aspect of genetic material (DNA molecules) and information Genetics - and to the complete inheritance Genetics of the human species.

The Declaration covers issues such as free, prior and informed consent in all cases of research, treatment or diagnosis affecting an individual's genome; discrimination on the basis of an individual's genetic characteristics; confidentiality of third parties' genetic data ; the right to fair compensation in case of genetic damage; and sets out the responsibilities of States in all these fields and related matters. It also calls on States to identify practices that are contrary to human dignity and expects States to prohibit them.

III. Conclusions

Over the course of these three days, you will examine a whole range of crucial issues related to life, from its beginning to its end. These issues are not only important for the committee scientist and decision-makers; in fact, before your very eyes, science and technology are in the process of transforming not only all aspects of economic and social life, but also cultural and private life. Science and technology are profoundly changing the relationship between people and nature, people and society, cultural representation, relationships between individuals; in other words, relationships between people and the world.

These advances in life and health sciences have led to applications that touch on many aspects of people's lives:

- Privacy (responsible personal decisions, confidentiality of individuals' medical and genetic data ).

- Family life (partner, reproductive choices, interpersonal relationships, as well as relationships with other family members, in particular siblings).

- Community life: its advantages, but also its responsibilities, especially in terms of solidarity with those at status most at risk;

- Economic and social life, with regard to health protection and medical care on the one hand, and biotechnological applications in agriculture, animal husbandry and the environment on the other.

Perhaps, for the first time, humanity has the opportunity, thanks to its knowledge and its technologies, to bring together fully up-to-date thinking and the challenges it faces, rather than simply recognising the damage done post facto. Instead of being merely a passive witness to its history, through its knowledge and its technology, mankind must ensure that the transformations taking place in the social fabric are accompanied by ethical reflection.

The relationship between science and the future of humanity is an intimate one. Global balances and the prevention of potential major conflicts will depend to a large extent on this relationship. Young people, perhaps more than any other social category, are aware of the tremendous possibilities offered by science and technology, but they are also aware of the possibility of misusing them and of a certain fossilisation of human relations.

In the UNESCO-produced film Genome: A Species Odyssey, politician Shimon Peres, former Israeli Foreign Minister and award Nobel Peace Prize winner, presents the idea that "we are approaching a new era (...) in which Science, Technology and Information matter much more than land, natural resources, population size or the strength of an army. We may be at the end of an era in which we had enemies, and at the dawn of an era in which we are going to have problems".

On the threshold of the third millennium, there is a need for an ethical diary to match the challenges we face. The Education must necessarily be based on two major concepts: the responsibility and solidarity of each individual towards all, the responsibility and solidarity of all individuals and society towards future generations and towards humanity in its temporal and spatial globality.