[By Prof. Trudo Lemmens]

Medical research is increasingly relying on biobanks, large repositories of human biological material and related health information. These can be best conceived as elaborate research infrastructures, which allow researchers, often brought together in international research consortia, to study in more detail the long-term interaction between genes, environment and life-style. Biobanks are an increasingly crucial research tool, but they also raise complex legal and governance issues, particularly related to privacy. A key challenge is the difficulty of adequately informing people who donate tissue samples and give access to personal data about the type of research that will be undertaken–often in the distant future–and what specific privacy risks are associated with it. There has been much debate about how traditional requirements of informed consent can be respected in the context of such open-ended information systems; whether informed consent should even be required; and how privacy protection can best be assured. Policy makers have taken various initiatives in this area. Genome Canada recently published, for example, a policy brief written by Timothy Caulfield and Bartha M. Knoppers to inform federal policy-makers of the various regulatory and policy options related to consent in the context of biobanks (http://www.genomecanada.ca/en/ge3ls/policy-portal/#coreAdvisory).

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