This project seeks to explore three concrete legal and ethical issues concerning the study of human genetic diversity. First, it will examine whether and how a population's desires concerning limitations on the uses of materials the population provides can be legally enforced. It will do that by collecting and analyzing existing materials transfer agreements, database access agreements, and legal precedents. Second, it will analyze whether, under existing legal and ethical principles, a project studying human genetic diversity legally can and ethically should include genetic samples that were collected for other purposes. Third, it will analyze the ethical and legal issues raised by this research in light of the laws and policies of other nations and international organizations, using the unique database of such laws and policies developed by the Centre de recherche en droit public at the Universite de Montreal. As we learn more about the `reference` human genome, we will need to know more about the variations in that genome spread throughout our species, for medical and other reasons. No large-scale, coordinated effort to study this human genetic diversity can be undertaken without a full understanding of the three areas that are the subjects of this application.
