Biobanks

Abstract

Nearly a decade since their creation, population biobanks have been credited for making possible large-scale human population genetics research studies looking to investigate and comprehend diseases by analyzing genetic variations and gene-environment interactions. The increase in number of both these population biobanks and the participants included therein has led to the need to harmonize where appro­priate, both the approaches and the tools used, so as to be able to achieve statistical significance. In that respect, the international Public Population Project in Genomics (P3G) enables this collaborative process. Indeed, only the passage of time will determine whether the bodies put in place to direct, oversee, set conditions for access, and also report to the public (who both participates and pays for the creation of such infrastructures) actually serve as ethi­cal safeguards or instead impede the use of biobanks for research. Examining in turn, then, the issues of governance, consent, confidentiality, and access followed by the emerging literature on return of results, recontact, reconsent, and commercialization, we will conclude with a critical examination of the future of population biobanks after a decade of their development.

Keywords: Anonymization, Biobank/biorepository, Coding, Consent/informed consent, Data Trustee/keyholder/custodian, Governance, Identifiability, Material/data transfer agreement, Population biobank