Biobank-Governance

Biobanks that store large masses of human biological samples and personal data for research purposes play a crucial role in international biomedical research. The samples and data stored, however, possibly reveal a lot about the individual donor and put him as well as connected individuals or groups at risk of discriminiation. The author questions whether the traditional requirement of the donor’s individual consent to unspecific future uses of his sample and data adequately protects his interests. She addresses the question if and how the donor should and can be further included in decisions regarding the future use of his sensitive samples and data. In particular, she analyses the potential of innovative so-called trust models for biobank-governance in a German context.