Member countries of the United Nations Educational, Scientific and Cultural Organisation (UNESCO) have adopted an international declaration committing themselves to ensuring that human genetic and proteomic data is used in a responsible manner.
According to the terms of the declaration, efforts should be made to ensure that such data "are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual".
The declaration, which was adopted by the UN organisation's general conference in Paris last week, also states that the data should not be used "for purposes that lead to the stigmatisation of an individual, a family, or a group or communities".
Addressing the general conference last month, UNESCO director-general Koïchiro Matsuura said that it was impossible to "overstate the urgency with which we must adopt such a declaration, because every day brings more new experiments and initiatives, some of which could have irreversible consequences."
The new declaration is intended to complement the Universal Declaration on the Human Genome and Human Rights, which was also developed by the agency and adopted in 1997. Its adoption follows a period of international consultation, and it has been phrased to take into account a wide range of situations in which it would apply (including the fact that some UNESCO members are already working on national legislation in this area).
According to the declaration, "each individual has a characteristic genetic makeup. Nevertheless, a person's identity should not be reduced to genetic characteristics, since it involves complex educational, environmental and personal factors and emotional, social, spiritual and cultural bonds with others and implies a dimension of freedom."
The declaration insists that collecting, treating, using and storing data should be done on the basis of "transparent and ethically acceptable procedures". It also proposes that this should be monitored by ethics committees established at national, regional, local or institutional levels.
When genetic data is being collected, the declaration emphasises "prior, free, informed and express consent, without inducement by financial or other personal gain” of the person providing the data. It accepts that limitations are possible, but adds that these should only be prescribed for "compelling reasons" consistent with the international law of human rights".
The declaration also recommends that genetic counselling be made available when genetic testing is being considered that may have significant implications for a person’s health, adding that such counselling should be "non-directive, culturally adapted and consistent with the person’s best interest".
On the topic of confidentiality, the declaration insists that genetic data linked to an identifiable person must not be made accessible to third parties, such as employers, insurance companies, educational institutions and families, unless there is an important public interest involved that is consistent with the international law of human rights.
Concerning sharing benefits, the text affirms, "In accordance with domestic law or policy and international agreements, benefits resulting from the use of human genetic data, proteomic data or biological samples collected for medical and scientific research should be shared with the society as a whole and the international community."
Click here for the text of the declaration.