Research, Governance, and Imaginaries of Publics. Public Engagement in the Context of the European Biobank Infrastructure

Abstract

This thesis debates how different “imaginaries of publics” are entangled with the governance of biobanks based on interpretive approaches. It builds on various kinds of data, ranging from legal documents, scientific publications, to ethnographic fieldwork. Major attention is given to the period between the 1990es and the year 2013, where various biobanks became involved in the ongoing emergence of a European infrastructure for biobanks (BBMRI-ERIC). While this thesis focuses different kinds of publics associated with this field, such as publics that emerge as imaginaries of science stakeholders, it discusses more particularly publics that were co-constructed in the context of focus groups and other public engagement exercises I was involved in. This kind of data is included in the form of articles I co-authored - which make this a cumulative dissertation. It shows that very different kinds and imaginaries of publics exist in the field of biobanks, and that these publics are entangled in complex relations of power that shape their constitution and their impact on the way how biobanks should be regulated. While the inclusion and the access of publics to the governance of biobanks might be interpreted as a well-meant effort to open up this infrastructure to wider audiences and to foster European values, expectations and hopes, it is essential to not overlook that they might in one and the same move be used to legitimize these infrastructures and could be carriers of particular governance strategies that are invisible at first glance