UNESCO moves towards declaration on human genetic data 14/7/03. By the Public Health Genetics Unit A UNESCO committee has drafted a declaration on safeguards to prevent the misuse of human genetic information.

Over the last few years, the International Bioethics Committee of the United Nations Educational, Scientific and Cultural Organization (UNESCO) has been deliberating on the safeguards needed to prevent misuse of human genetic information. In April it produced a 'provisional preliminary draft' of an international declaration on human genetic data that in June was approved by a meeting of government experts from member countries.

The draft declaration, which also applies, 'where applicable', to the biological samples from which the information was derived, deals with issues such as consent for the collection of samples, confidentiality of data linked to an identifiable person, specification of the purpose for which samples and data were collected, options for sharing of benefits arising from the use of data, storage of data and samples, and principles governing forensic use.

Many provisions of the draft declaration will be uncontroversial. Some, however, are inconsistent with current policy in the UK. For example, the declaration states that samples taken for forensic purposes can only be taken on the basis of a judicial decision, and cannot be retained beyond the period of the criminal investigation unless the subject is convicted of a crime; the UK Government currently wishes to retain all samples and genetic profiles collected, including those from people asked to volunteer samples for the purpose of elimination from an inquiry.

Depending on how they were interpreted, some provisions might also pose difficulties for genetic research, and population genetic databases in particular. These include a right for participants to "be informed of the results" (the nature of the information is not specified) and to receive genetic counselling "where the results of the testing or of the research could have an impact on the individual or the family, extending over generations" (again, 'impact' is undefined).

The declaration stops short, however, of a complete ban on the use of genetic information by third parties such as insurers or employers, stating that such uses should not be allowed "except in cases provided for by national law or regulation and in conformity with international human rights law".

The next step for the draft declaration is its submission to UNESCO's general conference in November 2003.

Article courtesy of the Public Health Genetics Unit.