Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development

Abstract

A preliminary consultation about Scotland's first family-based, population DNA database (Generation Scotland) involved 10 focus groups with diverse publics and a series of 17 interviews with key stakeholders in various locations in Scotland throughout 2003/2004. Unlike similar consultations on genetic databases, this took place at the concept phase of the proposed genetic research. We report on the specific concerns that arose around participation, access, use, feedback and public consultation. Broadly, we find differences between specialists and focus groups are mostly of degree and not of kind, although the specialists were more confident in some areas (e.g. governance). Given the salient and recurring nature of these issues when compared with the UK Biobank consultations, for example, we suggest that the efforts to consult have not been matched with equal effort on policy or institutional response. So, following from this, we offer compelling reasons for introducing more robust legislation and regulation.

Keywords:

• public engagement
• genetics
• governance
• specialists
• publics

Acknowledgements

We would like to thank all who gave up their time to participate in this study. We should also like to thank Claire Buré, Jane Ewins, Jennifer Speirs, and Eileen Mothersole for their help in setting up, conducting or transcribing the focus groups. Finally, we are grateful to the three anonymous reviewers for their comments, which we believe have helped improve and clarify our position.