Population Genomics and Research Ethics with Socially

Joan L. McGregor T he genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups to discover variation that could lead to knowledge about genetic disorders, possible cures, and the origin and migration patterns of distinctive peoples.1 Research on genetic differences among groups or populations, however, raises many pressing ethical and legal questions.2 For example, focus on biological differences of racial and ethnic groups has in the past lead to assumptions about superiority and inferiority between groups, and in practice resulted in stigmatization and discrimination. Consequently, attention on groups should raise legal and moral red flags and compel us to move cautiously in this area. Pragmatically, targeting population groups as the object of study requires the determination of the nature and scope of “population groups” for purposes of genetics research. What constitutes a “group” or “population” for purposes of these studies is highly contested as a legal, social, political, and cultural matter. Furthermore, since genetics research is now proceeding by focusing on genetic variation of population groups, should the ethical review of research protocols which have traditionally focused on protection of individuals change to focus on protection of groups? For instance, as opposed to focusing on the benefits and risks to individuals, it may make sense to pay attention to the risks and benefits of the research to the group, and as opposed to the sole concern with individual informed consent, it might make sense to seek some form of group consent or engagement. The operation of determining the “harms” to groups of any research, not to mention population genomic research, raises a host of difficult questions. For instance, what is the nature of the harms, can groups be harmed, are there groupspecific or culturally specific harms to groups, who are likely to suffer those harms, what are the benefits of the proposed research, and who are likely to share in those benefits? Furthermore, we might ask: is the question of risks and benefits the only question SYMPOSIUM