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UNESCO Adopts International Declaration on Human Genetic Data

NEW YORK, Oct. 21 (GenomeWeb News) - UNESCO -- the United Nations Educational, Scientific, and Cultural Organization -- adopted the International Declaration on Human Genetic Data at its General Conference meeting in Paris last week.  

"Every effort should be made to ensure that human genetic data and human proteomic 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 or for purposes that lead to the stigmatization of an individual, a family, or a group or communities," reads one of the provisions of the declaration.

The declaration, which outlines ethical principles that should govern the collection, processing, storage, and use of human genetic data, was written in response to the growing number of national genetic banking projects, according to UNESCO. Because governments are turning to genetic data to resolve questions of paternity or criminal cases, common ethical guidelines needed to be defined. "I could never 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," said Koïchiro Matsuura, UNESCO director-general, in his speech to the General Conference on September 30.

The declaration is not a legally binding instrument, but was chosen instead of a convention "to facilitate consensus and allow for adaptations in a domain where the variety of situations covered, and the complexity of the subject, is constantly evolving with new scientific discoveries," according to a UNESCO statement.

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 also calls for collecting, treating, using, and storing genetic data using transparent and ethically acceptable procedures. It proposes that independent, multidisciplinary ethics committees be established at national, regional, local, or institutional levels.

At the collection stage, the declaration emphasizes "prior, free, informed and express consent, without inducement by financial or other personal gain" of the person providing the data. At the processing stage, the declaration recommends that genetic data linked to an identifiable person not be disclosed nor made accessible to third parties -- in particular, employers, insurance companies, educational institutions, or families -- except for "an important public interest reason in cases restrictively provided for by domestic law that is consistent with the international law of human rights."

The declaration also notes that data collected for one purpose should not be used for a different purpose that is incompatible with the original consent.

The full text of the declaration is available here.

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