Revised Preliminary Draft of A Universal Declaration On The Human Genome And Human Rights

Eubios Journal of Asian and International Bioethics 7 (1997), 35-37.

The General Conference

Recalling that the preamble of UNESCO's Constitution refers to 'the democratic principles of the dignity, equality and mutual respect of men', rejects 'the doctrine of the inequality of men and races', 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 fulfill in a spirit of mutual assistance and concern', proclaims that 'peace must be founded upon the intellectual and moral solidarity of mankind', and states that 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 two International United Nations Covenants on Economic, Social and Cultural Rights, and on Civil and Political Rights of 16 December 1966, in the United Nations Convention on the Prevention and Punishment of the Crime of Genocide of 9 December 1948, the United Nations Convention on the Elimination of All Forms of Racial Discrimination of 21 December 1965, the United Nations Convention on the Elimination of All Forms of Discrimination Against Women of 18 December 1979, the United Nations 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 Recommendation on the Status of Scientific Researchers of 20 November 1974, the UNESCO Declaration on Race and Racial Prejudice of 27 November 1978 and the ILO Convention (No. 111) concerning Discrimination in Respect of Employment and Occupation of 25 June 1958,

Bearing in mind the international instruments which could have a bearing on the applications of genetics in the fields of intellectual property, inter alia, the Bern Convention for the protection of Literary and Artistic Works of 9 September 1886 and the UNESCO Universal Copyright Convention of 6 September 1952, as last revised in Paris on 24 July 1971, the Paris Convention for the protection of Industrial Property of 20 March 1883, as last revised at Stockholm on 14 July 1967, and the Budapest Treaty of the WIPO on International Recognition of the Deposit of Micro-organisms for the Purposes of patent Procedures of 28 April 1977, and the Trade Related Aspects of Intellectual Property Rights Agreement (TRIPS) annexed to the Agreement establishing the World Trade Organization, which entered force on 1st Janaury, 1995,

Bearing in mind also the United Nations Convention on Biological Diversity of 2 June 1992 and emphasizing in that connection that the recognition of the biological diversity of humanity should not give rise to any interpretation of a social or political nature which could call into question the "inherent dignity and (...) the equal and inalienable rights of all members of the human family", in accordance with the Preamble to the Universal Declaration of Human Rights,

Recalling 22 C/Resolution 13.1, 23 C/ Resolution 13.1, 24 C/ Resolution 13.1, 25 C/Resolutions 5.2 and 7.3, and 27 C/Resolution 5.15 and 28C/Resolutions 0.12, 2.1 and 2.2, 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 fields of biology and genetics, within the framework of respect for human rights and freedoms,

Recognizing that research on the human genome and the resulting applications open up vast prospects for progress in improving the health and well-being of individuals and humankind as a whole, but emphasing that such research should fully respect human dignity and individual rights, as well as the prohibition of all forms of discrimination based on genetic characteristics,

Proclaims the principles that follow and adopts the present Declaration.


l. The human genome is common heritage of humanity. It underlies the fundamental unity of all members of the human family, as well as the recognition of the inherent dignity of each of its members.

2. a) The genome of each individual represents a specific genetic identity.
b) Individual's cannot be reduced to their genetic characteristics.
c) Everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics.

3. The human genome, which by its nature evolves, is subject to mutations. It contains potentialities that are expressed differently according to the education, living conditions, food, state of health of each individual and in general his or her natural and social environment.


4. a) Research, which is necessary to the progress of knowledge, is part of the freedom of thought. Its applications, especially in biology and genetics, should relieve suffering and improve the health of individuals and the well-being of humankind as a whole.
b) Benefit from advances in biology and genetics should be made available to all, with due regard to the dignity and rights of each individual.

5. No research applications should be allowed to prevail over the respect for human dignity and human rights, in pareticular in the fields of biology and genetics.


6. a) Research, treatment or diagnosis affecting an individual's genome shall be undertaken only after rigorous and prior assessment of risks and benefits pertaining thereto and in accordance with any other regulation prescribed by national legislation in force.
b) In all cases indicated in paragraph (a) above, the prior, free and informed consent of the person concerned shall be obtained. if the latter is not in a position to consent, this shall be obtained from his or her representatives, guided by the person's best interest, as an individual or as a member of a given group.
c) In the particular case of research, protocols shall, in addition, be submitted for prior review in accordance with relevant national and international research standards or guidelines.
d) Exceptions to the stipulations in the preceding paragraphs (a) to (c) may be provided for by law for reasons of public safety in a democratic society, with the purpose inter alia of the prevention and repression of crime.

7. No one may be subjected to discrimination based on genetic characteristics that is intended to diminish or has the effect of diminishing human dignity or impairing the right to be treated equally.

8. Genetic data associated with a named person and stored or processed for the purposes of research or any other purpose must be held confidential and protected against disclosure to third parties.

9. Every individual has the right toa fair compensation for any injuries sustained as a direct and determining result of an intervention affecting his or her genome, in the conditions foreseen by law.


10. Researchers in the field of the human genome, because of the ethical and social implications of such research, shall do so with meticulousness, caution, intellectual honesty and integrity, both in conducting their research and in presenting and exploiting their findings.

11. States shall foster the intellectual and the material conditions favourable to freedom in the conduct of research on the human genome, on the basis of the principles set out in this Declaration.

12. States shall provide the framework for the free exercise of research on the human genome with due regard for democratic principles, in order to safeguard the dignity and rights of the individual, to protect health and the environment. They shall ensure that research results cannot be used for the prearation and conduct of wars.

13. States shall recognise the value of promoting, at various levels as appropriate, the establishment of independent, multidisciplinary and pluralist ethics committees to assess the ethical, social and human issues raised by research on the human genome and its applications.


14. States shall ensure respect for the duty of solidarity towards individuals, families and population groups that are particularly vulnerable or affected by disease or disability linked to anomalies of a genetic character. To this end, they shall foster research on identification, prevention and treatment of rare diseases or endemic diseases which afflict a large proportion of the world's population.

15. States shall undertake, with due regard for democratic principles, to foster the international dissemination of scientific knowledge concerning the human genome and to foster scientific and cultural co-operation, particularly between industrialized and developing countries.

16. a) In the framework of international co-operation, States shall ensure that:
I) research on human biology and genetics covers the special problems of developing countries;
ii) the capacity of those countries to carry out such research is strengthened;
iii) developing countries can enjoy the benefits of such research;
iv) the prevention of abuse and the assessment of the risks and benefits pertaining to research on the human genome are ascertained;
v) access to scientific knowledge in these areas is guaranteed.

b) Relevant international organizations shall support and promote the measures taken by States for the aforementioned purposes.


17. States shall undertake to promote specific teaching and research concerning the ethical, social and human basis and implications of biology and human genetics.

18. States shall undertake to encourage other forms of research, training and information conducive to raising awareness of society and all of its members of their responsibilities regarding the basic choices entailed by advances in biology and genetics. They shall also undertake to facilitate an open international debate, ensuring the free expression of socio-cultural, religious and philosophical opinions.


19. States shall undertake to ensure that the principles set out in this Declaration are respected and shall, by means of all appropriate measures, ensure their implementation.

20. States shall undertake to promote, through education, training and information, respect for the afore-mentioned principles and to foster their recognition and effective application.

21. The International Bioethics Committee of UNESCO shall help to disseminate the principles set out in this Declaration. It shall make recommendations and give advice concerning its follow-up.

23. Nothing in this Declaration may be interpreted as implying for any State, group or person any right to engage in any activity or to perform any act contrary to the principles set forth herein.

This version is of 20 December, 1996, and replaces the drafts of 7 March, 1995, 25 September, 1995, 20 March, 1996 following discussions of the International Bioethics Committee of UNESCO.
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;
The Declaration will be discussed at a Meeting of Government Experts to be convened by UNESCO, Paris, in July 1997; and at the Fifth Session of UNESCO International Bioethics Committee, to be held 6-10 October, 1997 in Capetown, South Africa. The contents of all earlier versions are on-line at the Eubios Ethics Institute world wide web site:
March 1995 -
September 1995 -
March 1996 -
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