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 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. Ill) 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 industrial 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,
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 interpreation of a social or political nature which could call into question the fundamental principle of equal dignity inherent in all members of the human family,
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 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 health and well-being of individuals and humankind as a whole,
(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 rights,
(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 human genome and the protection of the individual 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,
l. The human genome is a fundamental component of the common heritage of humanity.
2. a) The genome of each individual represents his or her specific genetic identity.
b) An individual's personality cannot be reduced to his or her genetic characteristics alone.
c) Everyone has a right to the respect for their dignity and of their rights regardless of these characteristics.
3. 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.
B . RESEARCH ON THE HUMAN GENOME
4. The protection of the individual with respect to the implications of research in biology and genetics is designed to safeguard the integrity of the human species, as a value in its own right, as well as the respect for the dignity, freedom and the rights of each of its members.
5. a) Research, which is an essential activity of the mind, has the function, in the fields of biology and genetics, of advancing knowledge, relieving suffering and improving the health and well-being of the individual and of humankind as a whole.
b) Everyone has the right to benefit from advances in biology and genetics, with due regard for his or her dignity and freedom.
6. No scientific advance in this field should ever prevail over the respect for human dignity and human rights.
C . INTERVENTIONS AFFECTING THE HUMAN GENOME
7. No intervention affecting an individual's genome may be undertaken, whether for scientific, therapeutic or diagnostic purposes, without rigorous and prior assessment of risks and benefits pertaining thereto and without prior, free and informed consent of the person concerned or, where appropriate, of his or her duly authorized representatives, guided by the person's best interests.
8. No one may be subjected to discrimination on the basis of genetic characteristics and that aims or has the effect of injuring the recognition of human dignity or the enjoyment of his or her rights on the grounds of equality.
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.
10. Everyone has the right to just reparation for any injuries sustained as a direct result of an intervention affecting his or her genome.
D. 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, the relief of suffering and the improvement of the health and well-being of the individal and humankind as a whole.
12. States shall provide a framework for research with due regard for democratic principles, in order to safeguard the dignity and rights of the individual, to protect health and the environment.
13. In view of its ethical and social implications, research in biology and genetics entails special responsibilities as regards the meticulousness, caution and intellectual honesty required of researchers.
E. DUTIES AND RESPONSIBILITIES TOWARDS OTHERS
14. States must guarantee the effectiveness of the duty of solidarity towards individuals, families or population groups that are particularly vulnerable to disease or disability because of a genetic character.
15. States shall recognise the value of promoting, at various appropriate levels, the establishment of independent, multidisciplinary and pluralist independent ethics committees to identify ethical, social and human issues raised by research and interventions affecting the human genome.
F. INTERNATIONAL C0-0PERATION
16. 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.
17. States shall undertake to promote specific teaching and research concerning the ethical, social and human foundations and implications of biology and human genetics.
18. States shall undertake to encourage any other form of research, training and information conducive to raising awareness of society of its responsibilities regarding the basic choices entailed by advances in biology and human genetics.
G. IMPLEMENTATION OF THE DECLARATION
19. States shall undertake to ensure that the principles set out in this Declaration are respected.
20. The principles set out in this Declaration shall guide all authorities and other persons responsible for their implementation.
21. States shall undertake to promote, through education, training and information, respect for the afore-mentioned principles, based on human dignity and human rights and to foster their recognition and effective application.
22. The International Bioethics Committee of UNESCO shall monitor observance of the principles set out in this Declaration. For this purpose, it may make recommendations or give advice.
23. No provision in this Declaration may be used by any State, group or person to ends contrary to the principles set forth herein.
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 < firstname.lastname@example.org >.
The text of this Declaration on the Human Genome is in EJAIB 6 (May 1996). The contents of both earlier versions are on-line at the Eubios Ethics Institute world wide web site:
March 1995 - http://eubios.info/EJ54M.html
September 1995 - http://eubios.info/EJ56/EJ56H.html