Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework

Abstract

Biobanks are a key emerging biomedical research infrastructure. They manifest the turn towards greater global sharing of genomic and health-related data, which is considered by many to be an ethical and scientific imperative. Our collective interests lie in improving the health and welfare of individuals, communities, and populations; improving health and welfare requires access to, and use of, widely dispersed quality data. But sharing these individual and familial data requires in turn that due thought be given to the ethical and legal interests at stake. Most critically, data sharing must occur in an environment whereby privacy interests are safeguarded throughout the lifecycle of biobank initiatives, and regardless of the locations where the data are stored, to which they are sent, and where they are ultimately processed. In this article, I outline the complex dimensions of data privacy regulation that challenge data sharing within the biobanking context. I discuss how harmonization may be a remedy for the gaps and marked differences of approach in data privacy regulation. Finally, I encourage the development of foundational responsible data sharing principles set within an overarching governance framework that provides assurance that reasonable expectations of privacy will be met.

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