Title: Universal Declaration on the Human Genome and Human Rights

Summary of Provisions:

The Universal Declaration on the Human Genome and Human Rights (UDHGHR) aims to provide principles to inform policy-making at national, regional and international levels to ensure that human rights are fully respected in the application of scientific and technological advances, particularly those which relate to the human genome. It recognises the great benefits to humankind that may arise from these advances and does not aim to unnecessarily restrict research, however it also recognises that there are risks posed to fundamental values of human dignity and human rights if science and technology are inapproprately or unthinkingly applied.

Its provisions include principles on prior-informed consent, confidentiality of data, reparation, protection of public health, benefit-sharing, freedom of research, and international cooperation. Genetic discrimination should be prohibited, along with any "Practices which are contrary to human dignity, such as reproductive cloning of human beings" (Article 11, UDHGHR). States should also ensure that the technologies are not used for non-peaceful purposes.

Summary of Development:

The United Nations Educational, Scientific and Cultural Organisation (UNESCO) established a bioethics programme in 1993 - one of its main roles is standard-setting for this area. UNESCO also established an International Bioethics Committee in 1993 and an Intergovernmental Bioethics Committee in 1998 which play key roles in the standard-setting process. Work on the Universal Declaration on the Human Genome and Human Rights was begun in 1993, and the Declaration was adopted by the 29th Session of UNESCO's General Conference in 1997. UNESCO has since developed two further declarations that build on the basis of the UDHGHR - the International Declaration on Human Genetic Data, and the Universal Declaration on Bioethics and Human Rights. The United Nations Declaration on Human Cloning, adopted by the UN General Assembly in 2005, also used principles from the UDHGHR as its basis. Summaries of these three declarations can also be found on this site by following the links below.

Precursors:

The Universal Declaration on the Human Genome and Human Rights incorporates many international human rights principles which can particularly be found in the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights.

Universal Declaration on the Human Genome and Human Rights

Related Summaries on the Genomics Gateway Site

International Declaration on Human Genetic Data

Universal Declaration on Bioethics and Human Rights

United Nations Declaration on Human Cloning

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Page last updated 26th March 2009.

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