What is the regulatory framework governing population genomics in Quebec?
• The Énoncé de principes sur la conduite éthique de la recherche en génétique humaine concernant des populations (2003) from the Réseau de medicine génétique appliqué (RMGA) addresses duties to consult the population of study, states that individuals recruited for such research must be informed that they are representing their community, and details requirements for benefit sharing. According to the RMGA, risk information provided to individuals and populations should include the possible risks of socio-economic discrimination and stigmatization that could result for the population if it is found that the population, as a whole, presents a particular genetic risk. • The FRSQ proposal for a Governance Framework for Data Banks and Biobanks Used for Health Research (2006) proposes guidelines to be incorporated into the FRSQ standards, as well as modifications to current administrative norms and to Quebec legislation.
