Biobank governance in the post-genomic age

Abstract

Biobank governance is about the regulation of the relationship between individual citizens, society and biobanks. Its key agenda is to link society, citizens and biobanks with respect to issues of consent, privacy, ownership, access and benefit sharing. With the transformation of biobank research from local/national activities towards transnational projects and the emergence of post-genomic medical research, biobanks need to establish novel governance structures. We consider governance solutions that focus on ‘bioethical–theoretical’ arguments to be of only limited value in this context. By contrast, we think the key lies in developing participatory arrangements that are responsive to the views of patients and ‘lay people’, and also operate on a transnational level. The social–political and communicative competence of biobank infrastructures must be improved, thereby assuring the long-term legitimacy and commitment to these often highly expensive projects from a large variety of different stakeholders over the decades.