Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland

Abstract

Our objective was to identify an acceptable governance model for population genetic data banks through measuring the importance of different ethical and social concerns and their relationship to reported likelihood to participate. We conducted a face-to-face interview survey of 1,001 members of the general adult Scottish population who were 16 and over, and included a discrete choice experiment. The results showed a quarter of respondents said that they were certain or very likely to take part in genetic database research. However, reported willingness to participate seemed to be unaffected by further information or governance options. We conclude participation is driven by personal and mundane, everyday factors rather than concerns about governance. However, this should not be seen as a reason to relax the transparent and robust governance frameworks currently under development.