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Ethics

This is the 2nd Draft of Unesco's proposed Declaration on the Human Genome and the Protection of Human Rights and dignity

Headings
1-21

UNESCO Revised Outline of a Declaration on the Human Genome and its
Protection in Relation to Human Dignity and Human Rights

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<(Note: changes made to Title, articles 1, 6, 7, 8, 10, 14, 16, 21)

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 and rights 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 be contrary to the respect
for human dignity and freedom.

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

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

8. No operation affecting a person's genome, can have any purpose other than
scientific, therapeutic or diagnostic. Such an operation can only be
undertaken subject to a risk/benefit assessment, and the obtention of the
prior, free and informed consent of the person concerned or, where
appropriate, of his or her duly authorized representatives, the relatives
and the family, as the case may be.'

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 an equitable reparation 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. States recognise the importance of promoting the creation
of multidisciplinary and pluralist independent ethics committees with the
task of identifying the ethical, social and human issues raised by research
and operations on the human genome.

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 and research
concerning the ethical, social and medical grounds and 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. Nothing in this Declaration may be used by
any State, group or person to ends contrary to the rights and freedoms set
forth herein.

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This version is of 25 September, 1995, and replaces the draft of 7 March,
1995, following discussions 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.

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