Genetic research, in particular the sequencing of the human genome, has opened the way for far-reaching medical research and biomedical applications. Genetic data can be used for medical diagnosis, disease prevention and population genetics studies. As each person’s genetic heritage is unique, forensic science and the judicial system also use them for identification purposes. The number of genetic databanks is rising, with some containing more than a million records. Some are maintained at a national level and contain samples from virtually entire national populations.
In this rapidly developing field, many people fear that human genetic data will be used for purposes contrary to human rights and freedom. Governments, non-governmental organizations, the intellectual community and society in general are calling for guidelines at the international level.
To address these concerns, the International Declaration on Human Genetic Data was adopted unanimously and by acclamation at UNESCO's 32nd General Conference on 16 October 2003. This Declaration and the Universal Declaration on the Human Genome and Human Rights are the only international points of reference in the field of bioethics.
Aware of the complexity and scale of research in genetics and the urgent need for international guidelines, the Director-General of UNESCO asked the IBC to examine the possibility of drafting an international instrument on human genetic data. The IBC was well-placed to do so: it had already considered human genetic data and had produced two reports: “Confidentiality and Genetic Data” (June 2000) and “Human Genetic Data: Preliminary Study of the IBC on their Collection, Processing, Storage and Use” (finalized in May 2002). The Director-General announced his initiative to the Second Session of the IGBC in May 2001, which welcomed it.
At its 31st session in Autumn 2001, the General Conference endorsed the proposal and requested the Director-General to “keep it informed of the action he intends to take on the advice and recommendations of the IBC and IGBC concerning the possibility of drafting an international instrument on genetic data” (31 C/Res. 22, para. 5).
The IBC set up in 2002, a Drafting Group chaired by Ms Nicole Questiaux (France) and Mr Patrick Robinson (Jamaica) that was invited to make proposals concerning the elaboration of the instrument. The Drafting Group elaborated a first outline of the text, which the IBC as a whole examined during its Ninth Session, in Montreal (Canada) in November 2002.
The revised outline was then the object of international consultation. It was sent to Member States of UNESCO, intergovernmental organizations, non-governmental organizations, specialists, professional research associations and many other organizations. As part of this consultation, a Public Hearings Day (read the final report) was held on 28 February 2003 in Monaco, and associations and institutions representing aboriginal groups, the handicapped, doctors and the private sector expressed their views.
After having been again examined by the Drafting Group, the outline was submitted in April 2003 to the Executive Board of UNESCO and then to the IBC at its Tenth Session in 2003.
The International Declaration, as finalized by the Meeting of Governmental Experts in June and by the Working Group set up by Commission III at the 32nd General Conference, was adopted unanimously and by acclamation by the General Conference on 16 October 2003.
See also our video series on Ethics of Genome Editing