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  • IRB: ETHICS & HUMAN RESEARCH

Consent and Population Genomics: The Creation of Generic Tools

There has been an increase in the creation of population biobanks and large-scale genomic cohort studies over the last few years. These resources collect samples and associated data in an organized manner for use by researchers in the study of gene-gene, gene-disease, and gene-environment interactions. Interoperability of data is important for these resources to allow them to share data and thus increase their statistical strength. Consent materials must therefore address the potential for sharing between resources, as well as other important issues intrinsic to the building of such research infrastructures. Using the information available from existing studies in population genomics, generic consent materials were created as tools for use in the academic and policy communities.

Key words/concepts: population genomics, biobanks, informed consent, policy

Susan Wallace, Stephanie Lazor, and Bartha Maria Knoppers, “Consent and Population Genomics: The Creation of Generic Tools,” IRB: Ethics & Human Research 31, no. 2 (2009): 15-20.