Title of Presentation
“Engaging publics, sharing knowledge and understanding citizens’ connections to donated bio-material in biobanking”
Date and Place
Johannes Starkbaum is researcher at the Department of Political Science at the University of Vienna, specialized in the governance of medical technologies and public engagement. He teaches qualitative methods at the University of Vienna and the ECPR Winterschool. Johannes has been involved in several national and European projects on ethical, legal and social aspects of biobanks and related technologies. He was member of the Life-Science-Governance (LSG) research platform in Vienna, Austria. Between 2013 and 2015, Johannes was based at the FAU University Erlangen-Nuremberg in Germany researching the role of experts and publics in emerging biotechnologies. Currently, he is also member of the Austrian infrastructure BBMRI.at and the European Common Service for Ethical, Legal and Social Issues at the BBMRI ERIC Infrastructure.
Providing different kinds of body material and information for biobank research has been subject of many debates, particularly because researchers and stakeholders increasingly aim to link-up data across political boarders. Building on these debates, our paper explores how people imagine the processing of data and their relations to these in the context of the Austrian biobanking landscape. It draws on empirical data from nine discussion events within the BBMRI.at project where various citizens, patient representatives and professional experts from the field debated about biobanking. The setting provided space for negotiating diverging understandings, interests, and perspectives in combining specialized (expert) knowledge of a specific field and local knowledge on societal contexts and embeddedness brought in by citizens. Based on these data, we are going to reveal how citizens built a connection to their body material, how understandings of “appropriate” research with biospecimens and personalised data were constructed, and how issues of informed consent were negotiated. A key conclusion was that donors expect the possibility to “track” their samples in order to have proof that their sample and data had been used for the purposes they intended. These findings are particularly relevant in the context of the (expert) debates on re-consent for the novel data protection directive of the EU.