pp. 10-12 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

O7. UNESCOs International Bioethics Committee and the Declaration on the Human Genome

David Shapiro

Lately Executive Secretary, Nuffield Council on Bioethics; Consultant, Wellcome Trust, UK.

A Declaration on the Human Genome and Human Rights

UNESCO has long encouraged reflection on the social and human consequences of scientific discoveries. In this respect, UNESCO endeavors to promote a comprehensive, world-wide approach to the issues connected with the growth of scientific research. From the early 1970s, UNESCO began to raise world awareness of the risk of impoverishing the genetic diversity of living species, particularly plants. Subsequently, UNESCO became actively concerned in promoting reflection on the various implications of the spectacular advances in biology and genetics, particularly with regard to the need to protect human rights.

In 1992, Mr. Federico Mayor, Director-General, decided to create the International Bioethics Committee of UNESCO (IBC), the sole international body in the field of bioethics. Composed of some sixty personalities from all over the world, who serve in a personal capacity, some of them present at this meeting, it is chaired by Mrs. No_lle Lenoir, Member of the "Conseil Constitutionnel" of France. The transdisciplinary composition of the Committee enables it to encompass the diversity of the issues raised by advances in research and applications in the life sciences.

After almost four years of intense reflection and work the structure and terms of the "Revised Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights" (20 December 1996) were approved by the Legal Commission of the IBC. This text was examined by a Committee of governmental experts in July 1997 and will be presented for adoption to the twenty-ninth session of the General Conference in October-November 1997.

Nature of the Declaration

A declaration would appear to be the most appropriate means of more rapidly securing the support of the international community for a few leading principles likely to foster protection of the human genome. With the current burgeoning of research on the human genome, and the applications arising from it, a worldwide standard-setting framework is urgently needed to ensure that such research and applications develop in a harmonious way that shows respect for human rights.

The IBC considered that the binding nature of a convention might well discourage some States from entering into such a commitment in a complex and very rapidly changing field. They might take the view, for example, that the gathering pace of advances in genetics could invalidate the provisions of such a convention. Furthermore, in view of the issues at stake in the protection of the human genome, the adoption of a declaration was deemed fully justified.

Lastly, the choice of the declarative form with regard to the human genome and human rights fully complies with the United Nations doctrine that "a declaration is a formal and solemn instrument that is justified on infrequent occasions when principles of major importance and lasting validity are being stated".

Guiding Principles

The declaration does not contain a definition of the human genome, so that the term may include the various aspects of the genetic substrata of human beings. The concept refers both to the total genetic material of humanity and all the genes of every individual. Furthermore, it refers to the genome in both its tangible aspect (DNA and RNA molecules) and its immaterial aspect (genetic information). Lastly, the notion refers both to the genetic programme which is the source of the vital functions of every individual, and to the genes that can be detached from one's body. It thus seeks to refer to the values attached to human identity.

The principles set out in the declaration are designed to transcend cultural and religious differences of approach. They seek to be universal and are therefore founded upon universally recognized human rights.

The essential concern of the declaration is to protect human dignity and human rights in the context of the growth of research and applications affecting the human genome. It seeks to prohibit all forms of improper use B whether political, ideological, economic or social - of research findings and their applications.

Underlying the text as a whole are a number of guiding principles. Related to human dignity is the broader field of all human rights and freedoms. Research is also a way of expressing human dignity, and as such there should be recognition of the freedom of research. The International Covenant on Economic, Social and Cultural Rights (1966), in Article 15, paragraph 3, stresses the need to respect the freedom of scientific research. UNESCOfs Recommendation on the Status of Scientific Researchers (1974) reaffirms that principle in Article 8.

Freedom of research, however, cannot be absolute and, if necessary, it should be circumscribed. This is particularly the case where research might violate the respect for human dignity from which it derives its legitimacy. In the field of human genetics, this would be true, for instance, of research aimed at creating human and animal hybrids or aimed at human cloning for reproduction purposes.

The principle of solidarity between human beings is also derived from the dignity of individuals. This means that all members of the human family have a right to living conditions which are consistent with their dignity, and that human beings should express their solidarity with those who are victims of the vicissitudes of life. With regard to human genetics, the duty of solidarity applies to those who are exposed to genetic disability or disease.

This duty must be shouldered at both the national and the international levels. Internationally, the goal should be to ensure that the least affluent countries are not excluded from the benefits of genetic research and denied access to its therapeutic applications. At the national level, as well as equal access to health services and treatment, States should also ensure that persons suffering from genetic disability or disease receive appropriate assistance to enable them to live in decent conditions.

The application of these three fundamental principles - the dignity of individuals, freedom of research, and solidarity amongst human beings - makes it possible to design a well-balanced structure for the declaration on the human genome. In order to ensure the application of these principles, this international instrument will need to bring to the fore the duty of States to promote a democratic debate on the advances in human genetics and the corresponding issues at stake, and to emphasize the need for scientific and cultural co-operation in this field, particularly in the context of North-South relations.

Advances in human genetics require choices to be made which call for the involvement of everyone. It is up to States, as the guarantors of democracy, to ensure this by taking appropriate action. Education is an essential means of promoting lasting recognition of the principles that should guide research on genetics and its applications. The widespread teaching of bioethics should therefore be recommended, at all levels of education and in-service training. Decision-makers and the general public must be provided with information on findings in biology and genetics and encouraged to debate their implications.

UNESCO expects the declaration on the human genome and human rights to become a reference text. It is the result of a collective undertaking and of a dialogue between scientists, jurists and philosophers who compose the IBC. This text will be the first international text to confront human dignity with problems posed by advances in the life sciences. Furthermore, it must be recognized that public international law has to intervene before problems develop into conflicts.

By stating that the human genome is part of the common heritage of humanity, the declaration seeks above all to emphasize the international community's duty to ensure the preservation of the human race and its moral values, vis-_-vis the potential risks linked to genetic research. Humanity now has at its disposal unprecedented powers that could promote forms of selection or discrimination against people incompatible with the respect to which they are entitled. By describing the human genome as a "common heritage of humanity" the declaration emphasizes the supreme value attached to the preservation of the unity of the human race. In so doing it is in keeping with the Declaration on Race and Racial Prejudice of 27 November 1978, Article 1 of which proclaims: "All human beings belong to a single species and are descended from a common stock. They are born equal in dignity and rights and all form an integral part of humanity".

Applied to the human genome in its intangible form, the term "common heritage of humanity" stresses the imperative for an equitable sharing of scientific knowledge of the human genome which should benefit humanity as a whole. However, this principle does not exclude intellectual property rights in research findings in genetics. The lack of appropriate financial incentive might seriously hinder the momentum of such research, which requires considerable investment. Systems of legal protection of research findings must strictly comply with the criteria usually required (as far as patentability is concerned, this excludes, in particular, the patenting of a gene or a gene sequence "in its natural state"). It should be remembered that UNESCO, which is competent in the field of intellectual property rights as regards copyright, has no special qualifications over patents, which is above all the responsibility of World Intellectual Property Organization (WIPO) and the World Trade Organization (WTO).

It should be noted here that the General Conference itself, at its twenty-eighth session (1995), extended the notion of common heritage of humanity to the genome. In paragraph 6 of 28@. In paragraph 6 of 28@C/Resolution 0.12, the General Conference:"Reaffirms in this connection the urgent need to strengthen the moral solidarity of mankind in order to safeguard its common heritage - natural and cultural, tangible and intangible, intellectual and genetic; " (emphasis added).

Designation of the genome as common heritage of humanity is also aimed at stressing the fundamental unity of all members of the human family. Furthermore, it is the principle of human dignity that underscores the legitimacy of this designation. Recognition of the human genome as common heritage of humanity is not intended to ensure its intangibility, since the human genome is by nature subject to variations. There is consequently no question of sanctifying the genome, which is merely a component of human identity. The Revised Preliminary Draft therefore strongly condemns all genetic reductionism. The use of the concept of common heritage of humanity also lays stress on the importance of equitable sharing among countries of the expected benefits of research on the human genome and its applications. The aim is to guarantee the access of all people and of all countries, especially the countries of the South, to the results of research and its applications.

Conclusions

The working methods of the IBC have been characterized by three essential features. First, the IBC has taken a pragmatic approach. Second, the IBC has opted for transparency - by broad dissemination of its reports and, most importantly, through an international consultation of international, intergovernmental and non-governmental organizations, national institutions and prominent personalities. Third, the IBC decided to state principles in its draft declaration rather then refer to specific applications or technologies for two reasons: references to specific practices often become obsolete in view of the rapidly changing nature of technology; enumerating and banning certain practices would limit the scope of the principles set out in the declaration and undermine their universal character.


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