REVISED OUTLINE OF A (UNESCO) DECLARATION ON THE PROTECTION OF THE HUMAN GENOME*
Eubios Journal of Asian and International Bioethics 5 (1995), 97-99.

Recalling that UNESCO's Constitution, in its third preambular paragraph, affirms 'the democratic principles of the dignity, equality and mutual respect of men' and rejects 'the doctrine of the inequality of men and races'; that. in its fourth preambular paragraph, it stipulates 'that the wide diffusion of culture, and the education of humanity for justice and liberty and peace are indispensable to the dignity of men and constitute a sacred duty which all the nations must fulfil in a spirit of mutual assistance and concern'; and that, in accordance with its last preambular paragraph, the Organization seeks to advance 'through the educational and scientific and cultural relations of the peoples of the world, the objectives of international peace and of the common welfare of mankind for which the United Nations Organization was established and which its Charter proclaims',

Solemnly recalling its attachment to the universal principles of human rights. affirmed in particular in the Universal Declaration of Human Rights of 10 December 1948, in the International Covenant on Economic, Social and Cultural Rights, and in the International Covenant on Civil and Political Rights of 16 December 1966, in the Convention on the Prevention and Punishment of the Crime of Genocide of 9 December 1948, the International Convention on the Elimination of All Forms of Racial Discrimination of 21 December 1965, the Convention on the Elimination of All Forms of Discrimination Against Women of 18 December 1979, the Convention on the Rights of the Child of 20 November 1989, the Convention on the Prohibition of the Development, Production and Stockpiling of Bacteriological (Biological) and Toxin Weapons and on their Destruction of 16 December 1971, the UNESCO Convention against Discrimination in Education of 14 December 1960, the UNESCO Declaration of the Principles of International Cultural Co-operation of 4 November 1966, the UNESCO Declaration on Race and Racial Prejudice of 27 November 1978 and the ILO Convention (No. Ill) concerning Discrimination in Respect of Employment and Occupation of 25 June 1958,

Bearing in mind the international instruments relating to fields more specifically concerned with the protection of the human genome, in particular the UNESCO Universal Copyright Convention of 6 September 1952, the WIPO Copyright and Patent Conventions, and the United Nations Convention on Biological Diversity of 2 June 1992,

Recalling 24 C/Resolution 13.1, 25 C/Resolutions S.2 and 7.3 and 27 C/Resolution S.IS urging UNESCO to promote and develop ethical studies, and the actions arising out of them, on the consequences of scientific and technological progress in the biomedical field, within the framework of respect for human rights and freedoms,

Recognizing that :

(a) research on the human genome and the resulting applications open up vast prospects for progress in improving the well-being of individuals and peoples and reducing inequalities throughout the world,

(b) the applications of genetic research must, however, be regulated in order to guard against any eugenic practice that runs counter to human dignity or human freedom,

(c) the human and social situations generated by advances in biology and human genetics require that there should be a very open international debate, ensuring the free expression of the various shades of socio-cultural, religious and philosophical opinion,

Considering lastly that the principles relating to the international protection of the human genome are all based, in accordance with the preamble to the Universal Declaration of Human Rights, on 'recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family (which) is the foundation of freedom, justice and peace in the world,


Proclaims hereby that: the human genome is the common heritage of humanity.

l. The human genome is a fundamental component of the common heritage of humanity and needs to be protected in order to safeguard the integrity of the human species, as a value in itself, and the dignity of each of its members.

2. The human genome, which is by nature evolutive and subject to mutations, contains potentialities that are expressed differently according to the environment, education, living conditions and state of health of each family and each individual.

3. Each human being possesses a specific genetic identity. An individual's personality cannot be reduced to his or her genetic characteristics alone. All individuals have a right to respect for their dignity regardless of those characteristics.

A . AIMS OF RESEARCH ON THE HUMAN GENOME

4. Everyone has the right to benefit from advances in biology and human genetics, with due regard for their dignity and freedom.

5. Research, which is an essential activity of the mind, has the function, in the field of human genetics, of relieving the suffering and improving the well-being of humanity.

6. No scientific advance in this field can ever take precedence over respect for human dignity and freedom.

B . OPERATIONS AFFECTING THE HUMAN GENOME AND HUMAN RIGHTS AND FREEDOMS

7. No one may be subject to discrimination on the basis of their genetic characteristics.

8. No operation affecting a person's genome, whether the purpose of the operation is scientific, therapeutic or diagnostic, may be undertaken without the prior, free and informed consent of the person concerned or, where appropriate, of his or her duly authorized representatives.'

9. The confidentiality of genetic data associated with a named person and stored or processed for the purposes of research or any other purpose, must be protected from third parties except where the law provides otherwise and where justified by the general interest.

10. Everyone has the right to be compensated for any injuries sustained as a result of an operation directly affecting their genome.

C. RIGHTS AND OBLIGATIONS OF RESEARCHERS

11. States shall ensure the intellectual and the material conditions favourable to research on the human genome, in so far as this research contributes to the advance of knowledge and to the prevention of disability and disease.

12. States shall regulate research with due regard for democratic principles and whenever it is necessary for them to do so in order to safeguard human dignity and freedom and protect health or the environment.

13. In view of its ethical and social implications,research in human genetics entails special responsibilities as regards the meticulousness, caution and intellectual honesty required of researchers.

D. DUTIES AND RESPONSIBILITIES TOWARDS OTHERS

14. States must ensure that the community fulfils its duty of solidarity in regard to individuals, families or population groups that are particularly vulnerable to disease or disability because of their genetic characteristics.

E . INTERNATIONAL C0-0PERATION

15. States shall undertake to foster the international spread of scientific culture concerning the human genome and to foster scientific and cultural co-operation, particularly between industrialized and developing countries.

16. States shall undertake to promote specific teaching concerning the ethical, social and medical implications of biology and human genetics.

17. States shall undertake to encourage any other form of research, training and information calculated to make civil society aware of its responsibilities regarding the choices made necessary by advances in biology and human genetics.

F. IMPLEMENTATION OF THE DECLARATION

18. States shall adopt such normative measures as they consider appropriate to meet the purpose of this Declaration.

19. The principles set out in this Declaration shall serve as a basis for the normative measures adopted by States. They shall also guide those in charge of institutions, and any other persons responsible for the application of such measures.

20. States shall be duty bound to promote, through education training and information, respect for the afore-mentioned principles based on human dignity and freedom, and to ensure both nationally and internationally that they are recognized and effectively applied.

21. The International Bioethics Committee of UNESCO shall ensure the implementation of this Declaration. For this purpose, it may make recommendations or give advice.


*This version is of 7 March, 1995, and will be discussed at the Third Session of the International Bioethics Committee of UNESCO in Paris at the end of September, 1995.

Comments to: Mr. Georges Kutukdjian,
Director, Bioethics Unit (SHS), UNESCO,
1 rue Miollis, 75732 Paris Cedex 15, FRANCE.
Comments for publication in EJAIB to: Dr Darryl Macer,
Institute of Biological Sciences, University of Tsukuba,
Tsukuba Science City 305, Japan;
Email: asianbioethics@yahoo.co.nz


QUESTIONNAIRE

CONCERNING THE UNESCO DECLARATION ON PROTECTION OF THE HUMAN GENOME

I. AIMS OF THE DECLARATION ON PROTECTION OF THE HUMAN GENOME

l.1 What, in your view, should the basic aims of protection of the human genome be, as regards international law?

l.2 What conclusions do you draw from consideration of the human genome as forming part of the common heritage of humankind, and do you feel that it is appropriate to consider it so?

II. HUMAN RIGHTS AND HUMAN GENETICS

2.1 According to the major international instruments, human rights are based on recognition of the dignity and freedom of human beings. How far should these principles be applied to protection of the human genome?

2.2 In your view, what 'eugenic practices contrary to the dignity or freedom of human beings' should be proscribed by the declaration?

2.3 What principles should be reaffirmed with a view to guaranteeing human rights in cases where genetic research involves human beings or in the case of any other biomedical operation on the genome of a human being?

III. THE STATUS OF RESEARCHERS

3.1 Do researchers have specific obligations with respect to human genetics? If so, what are they?

3.2 Should the principle of freedom of research be limited as regards genetics?

IV. SOLIDARITY AND INTERNATIONAL COOPERATION

4.1 What practical form should the duty of solidarity affirmed by the declaration take with regard to the object of protection of the human genome?

4.2 What, in your view, are the most appropriate forms of international cooperation for protection of the human genome? In particular, what role should be played by cooperation in information and education?

V . OTHER REMARKS


>EXPLANATORY NOTE ON THE UNESCO DECLARATION ON PROTECTION OF THE HUMAN GENOME

Research on the human genome and the applications arising from that research hold out great promises for humankind. At the same time, they bear within them the risk of grave deviations that may jeopardize the very perpetuation of the human race and the values underpinning its cohesion. It would therefore seem important to promulgate a framework for protection capable of ensuring worldwide respect for the fundamental human rights.

Such is the purpose of this declaration on protection of the human genome.

The protection it describes is based on three fundamental principles:
* the respect for human dignity;
* freedom of opinion and expression, from which freedom of research derives;
* human solidarity.

l. The scope of protection

Protection of the human genome concerns both individuals and groups and, in a broader sense, the entire human community; it must ensure the dignity and freedom of every human being, from both the physical and moral points of view. It must also guarantee the confidentiality of genetic data on individuals and families, which are part of each person's own identity.

Nevertheless, the genome of each human being is in a state of evolution. Indeed, the human genome is in constant interaction with its environment and hence subject to mutations. It is therefore not possible to assert the principle of the violability of the human genome.

2. The human genome as the common heritage of humankind

International law already gives recognition to the notion of ' the common heritage of humankind'. For instance:

* the United Nations Convention on the Law of the Sea, of 10 December 1982, proclaims that the seabed and ocean floor, and the subsoil and resources thereof, beyond the limits of national jurisdiction, are the common heritage of mankind (Article 136);

* the Agreement Governing the Activities of States on the Moon and other Celestial Bodies, of 18 December 1979, proclaims that the moon and its natural resources are the common heritage of mankind (Article 11.1) .

As a result of this provision, the moon is not subject to national appropriation by any claim of sovereignty (Article 11.2). Exploitation of the moon's resources are therefore to be carried out in the interests of all humankind.

* the Convention on Biological Diversity, of 5 June 1992, affirms in its preamble that 'the conservation of biological diversity is a common concern of humankind'.

However, the convention does not make biological resources a component of the common heritage. Consequently, states retain a sovereign right to exploit their own resources and to authorize access to their genetic resources.

Indeed, UNESCO has frequently made reference to this notion in the cultural sphere: UNESCO's Constitution includes the notion of the world,s inheritance of books, works of art and monuments of history and science (Art I.2 (c)).

The Declaration of the principles of International Cultural Cooperation, of 4 November 1966, proclaims that 'all cultures form part of the common heritage belonging to all mankind' (Article I.e). This wording is designed to emphasize that each culture reflects the originality of a society and its set of values while at the same time expressing the creative faculty inherent in the human race. This declaration establishes the duty of states to endeavour to preserve the rich variety and diversity of all cultures (article I.3). Various other UNESCO instruments (in particular the preamble to the Declaration on Race and Racial Prejudice, of 27 November 1978) state that cultures are part of the common heritage of humankind.

The Convention for the Protection of the World Cultural and Natural Heritage, of 16 November 1972, also notes in its preamble that part of the cultural and natural heritage belong to the 'world heritage of mankind as a whole'. The idea is simply to highlight the importance of the duty incumbent on the international community to preserve such cultural and natural property in view of their universal value. The States Parties consequently have certain obligations to provide assistance and ensure surveillance; however, their effective rights to the property located in their territory are not called into question.

By asserting that the human genome forms part of the common heritage of humankind this declaration underscores the responsibilities of the human community and draws attention to the need to ensure global awareness of the issues involved in human genetics. In so doing, it is aimed at giving legal expression to the ethics of responsibility.

And yet, the debate over the inclusion in the heritage of the genome as an element of the human body remains open. On the one hand, national legislation and jurisprudence may either recognize or reject inclusion in the heritage of the elements and products of the human body. On the other hand, whatever legal stand is adopted, there remains the question of the patentability of the results of genetic research, and this issue is particularly acute in the case of the human genome.

3 . Respect for human dignity, a fundamental principle of ethics

Respect for human dignity is one of the fundamental principles of the Charter of the United Nations and one that is invoked by the major international human rights instruments. In particular, the preamble to the Universal Declaration of Human Rights, of 1948, makes solemn reference to it, as do the International Convenant on Economic, Social and Cultural Rights and the International Convenant on Civil and Political Rights, of 16 December 1966. It is a principle that underlies all human rights, as recognized by the preamble, to the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, of 10 December 1984.

The Constitution of UNESCO refers in its preamble to 'the democratic principles of the dignity, equality and mutual respect of men'

The Convention against Discrimination in Education of 14 December 1960, and the Declaration on Race and Racial Prejudice, of 27 November 1978, also refer to this principle.

It is enshrined in the constitutions of many states.

The present declaration reaffirms this principle, from which are derived the rights and freedoms justifying the protection of individuals in the face of research and operations on the human genome:

* the right to equal treatment and the rejection of all forms of discrimination;

* the right to individual freedom, which underlies the requirement of free consent;

* the right to the protection of privacy, which makes it incumbent to protect the confidentiality of information concerning individuals,

* the principle of solidarity between human beings and between countries, which is a counterpart to the right of every individual to decent living conditions and the benefits of scientific progress.

All these rights are based squarely on the principles contained in the Universal Declaration of Human Rights. The requirement that individuals must give their free consent to medical or scientific experimentation is contained in the 1966 International Convenant on Civil and Political Rights (Article 7) .

As a supplement to these rights, it is proposed to enshrine the principle of the right to compensation in cases where harm occurs as a result of an operation on the human genome .

4 . The free pursuit of research activities. a component of the freedom of expression

The freedom indispensable for scientific research which is recognized by the 1966 International Convenant on Economic, Social and Cultural Rights (Article 15.3), forms part of human rights. In accordance with the Universal Declaration of Human Rights, this freedom derives on the one hand from the right to freedom of opinion and expression (Article 19), and on the other hand from the right everyone has freely to participate in the cultural life of the community and to share in scientific advancement and its benefits (Article 27.1) .

UNESCO's Recommendation on the Status of Scientific Researchers, of 20 November 1974, recognizes in its preamble that open communication of results, hypotheses and opinions lies at the very heart of the scientific process, and it refers in paragraph 8 to the autonomy and freedom of research necessary to scientific progress.

The principle of the freedom of research is commonly applied in the constitutional law of various states. The declaration reaffirms this principle, it being understood that it shall apply equally to both fundamental and applied research. Nevertheless, the declaration also stresses that it must not override the principle of respect for human dignity.

5. Solidarity. a national and international duty

The duty of solidarity is a counterpart to the affirmation of various principles on the joint basis of which is established the right of all human beings and all peoples to live in dignity and to benefit from an enhanced standard of living and level of knowledge. In particular, these principles cover:

* the right to benefit from scientific progress and its applications;

* the right to social protection against the risks of daily life: disease, disabilities, old age. unemployment and exclusion.

They are affirmed by, inter alia, the International Convenant on Economic, Social and Cultural Rights.

The declaration underscores the importance of the duty of solidarity with respect to protection of the human genome. Care must be taken to ensure that progress in genetics does not call into question programmes of assistance to individual human beings or groups who suffer from genetic defects. Care must also be taken to ensure that the developing countries are not excluded from advances in genetics.


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