Incidental findings: the time is not yet ripe for a policy for biobanks

Abstract

INTRODUCTIONHow do Europeans view biobanks? What do they know about them, and how do they want biobanks to operate? Where are the public sensitivities? And what do Europeans think about the fact that more and more biobanks are cooperating to build huge data infrastructures?These topics will be discussed in this working paper.How publics perceive biobank projects is of great importance for these projects and will considerably influence their development and future success. Biobanks are dependent not only on donors but also on societal and political support.When people participate in a biobank study, they typically donate blood, tissue, and body fluid, including DNA data. Donating bio-specimens is unlike donating blood for blood transfusions. Once the blood is donated, it disappears into a large system of blood supply (Waldby and Mitchell, 2007). However, in a biobank or cohort study, the samples attain their scientific value by being linked with personal information such as medical records and social and environmental data. Donated tissue or DNA has the potential to become a scientifictechnological resource for further research. This raises a range of ethical issues affecting donors and society including forms of consent, privacy and data protection, and benefit sharing.Our research shows that the public perception of biobanks in Europe is characterized by striking heterogeneity. While there is a cluster of North European countries that are rather enthusiastic about the prospect of biobank research, the publics of many Central and Southern European countries harbour substantial reservations when it comes to participating in biobank research, donating tissue, and giving broad consent for research. In this paper we describe the differing patterns in the public perception of Biobanks in Europe and explore with qualitative 2 and quantitative data what may underpin these different perceptions. We then discuss the implications of the findings for recruitment, operation, and governance of biobanks and suggest how Europe can move towards responsible innovation (von Schomberg 2011). MethodologyThe overall aim of our investigation was to analyse how people in Europe perceive biobanks and research using biobank data, and to identify the issues they consider to be of central importance and relevance. For this purpose, we created a comprehensive data set of qualitative and quantitative data using focus group and social survey methodologies.Focus group methodology is a well-established method in the social sciences. It is designed to explore, with groups of six to ten participants, the "whats" and "whys" lying behind people"s views, opinions, and articulations. The typical focus group in our study had a mix of gender, educational backgrounds, and ages corresponding to the average distribution in the European population (Krueger and Casey, 2009; Bloor et al, 2001). For our project this meant that the participants were purposely selected to represent the characteristics of the anticipated population of different European populat...

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