Bartha Maria Knoppers and Linda Kharaboyan
* Director, Centre of Genomics and Policy, McGill University, Montreal. † Research Associate, CRDP, University de Montréal. (This work was funded in part by Genome Quebec and Genome Canada).
Biobanks have been troubled by a history of confusion and controversy around certain key concepts such as “broad consent”, and, more recently, “return of results”. This article analyses the return of results only as it pertains to the participation of (presumably healthy) volunteers in the creation of longitudinal biobank infrastructures for future unspecified research. Limiting ourselves to the trajectory of a typical protocol then that begins with: the arrival of volunteers at assessment centres for the collection of blood and the filling-in of extensive questionnaires on lifestyle, socio-demographic factors and family history; followed by long term storage; and finally the use by researchers accessing such biobanks (it is evident that it is necessary to distinguish between the different obligations that may arise at distinct moments in this trajectory). We posit that there are five types of communication, and we explore the best means of protecting the privacy of those involved in such biobanks, concluding that international policies are converging towards an ethical duty to return individual genetic research results to subjects, provided there is proof of validity, significance and benefit.
