Population studies: return of research results and incidental findings Policy Statement
Bartha Maria Knoppers1, Mylène Deschênes, Ma'n H Zawati
1Public Population Project in Genomics and Society (P³G), Montreal, Quebec, Canada. bartha.knoppers@mcgill.ca
Abstract:
The Public Population Project in Genomics and Society (P³G) is a not-for profit international consortium with members from more than 40 countries. Its objective is to lead, catalyze, and co-ordinate international efforts and expertise in order to optimize the use of population studies, biobanks, research databases, and other similar health and social science research infrastructures. The year 2011-2012 witnessed a plethora of special issues of journals on the return of results but few discussed the particular situation of population studies that serve as resources for future unspecified research. P³G considers it important to propose a policy that distinguishes between the contexts of population research and disease (clinical) research involving patients and then delineates actual and future obligations. The objectives of this Policy Statement are to: (1) delineate the particular characteristics of population studies, (2) distinguish the circumstances surrounding access by researchers to such studies, and (3) develop a framework for the return of research results and incidental findings.
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