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Assessing Democratic Governance of Genomics: the Case of Large-Scale Population Biobanks

Assessing democratic governance of genomics is an ESRC Innogen, phase II, project that aims to '˜evaluate' processes of democratic steering of new life science technologies. The focus of research is on large-scale population biobanks. The project first draws on contemporary theories of democracy in order to develop a set of valid indicators of assessment. Secondly, it applies these indicators to specific cases of large-scale population biobanks, identifying '˜gaps' and '˜good practices' in their processes of democratic governance.

This scoping paper describes in detail the project rationale and the main theoretical concepts that will guide research. Also, it formulates specific questions to be empirically investigated and the research methodology to be used.

The paper is structured as follows: section 2 explains the project rationale and key themes of research; section 3 presents the framework of conceptual understanding of democratic governance of large-scale population biobanks; section 4 describes the research methodology, identifying preliminary qualitative indicators to be tested throughout the project.