Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed large-scale genetic databases in (...) Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a “communication approach” in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a “partnership approach” to involve the public in decision-making processes. (shrink)

Storage and secondary use of bloodspots collected for newborn screening raises controversies because of the particularly sensitive nature of the information that can be derived from them and the lack of national standards and consistent provincial policies that can serve to guide storage facilities. This report, derived through a review of Canadian and provincial policy statements, a survey of provincial newborn screening laboratory directors and program directors, as well as through a consultative workshop, illustrates the social, ethical and legal issues (...) regarding the storage, access and further uses of newborn bloodspots. The report indicates that there is a need for heightened transparency and clear recommendations concerning the criteria for storage, the duration of storage, and permissible secondary uses of dried bloodspots in Canada. (shrink)