Engaging Consent: Exploring Public Participation and Informed Consent in Biobanking

Monday, 11 July 2016
Location: Hörsaal 32 (Main Building)
Distributed Paper
Melanie GOISAUF, University of Vienna & Life Science Governance Institute, Austria
Johannes STARKBAUM, Department of Political Science, University of Vienna, Austria
Anna DURNOVA, University of Vienna & Life Science Governance Institute, Austria
Biobanks for scientific research are dependent on samples and information from patients or other members of the public. Collecting, storing, and distributing these data and information is regulated by informed consent. On the one hand, informed consent is supposed to inform participants, while on the other it should provide a legal framework for biobanking. Actually, different biobanks use very different forms of consent - they range from narrow to broader consent models, from opt-in to opt-out models, or from static to dynamic models. Some informed consent sheets are up to 20 pages and longer, while others are just a few pages long. Being informative for participants while providing a legal framework for data storage and exchange opens up a wide range of complexities - also fostered by increasing trends for public engagement and novel data protective frameworks.

Against this background, we are going to reveal how ethical, legal, and social implementations regarding informed consent in biobanks are addressed in participatory practices. In doing so, we refer to data gathered within the Austrian BBMRI.at project, which is part of the European biobanking initiative BBMRI ERIC. Our empirical study consists of a qualitative in-depth analysis of (1) different forms of informed consent sheets applied in biobanking practice in Austria and (2) of discussions of biobank-stakeholder with members of the public. The discussions were organized as citizen-expert-panels, a method designed and realised in the project in order to link different forms of knowledge and to foster public engagement in the Austrian biobanking landscape. In our paper we will explore different examples of informed consent and linking it to rationales expressed during six citizen-expert-panels that were held in Austria.