Public Involvement in the Governance of Population Level Research (360G-Wellcome-219383_Z_19_Z)

Population-level research governance is at a critical juncture. Traditional governance tools, like informed consent and expert committee review processes, have been stretched beyond their ability to function in an effort to accommodate research at scale. While consensus on the importance of involving the public in governance exists, there is little agreement on what such involvement means in practice, when it should be undertaken, and what the primary justifications for it are. There is also little understanding of how involvement approaches integrate with other legal and regulatory structures to effectively inform governance. Primary aims: Conduct scoping work which examines: How should we characterise the range of governance and regulatory challenges that confront us with respect to population-level biomedical research? What approaches are currently being used to address these challenges and how, if at all, do these techniques incorporate elements of public involvement? Where are potential areas that public involvement might be introduced to meet these governance challenges? Build an international network which focuses on the intersection of governance and societal involvement in the context of population-level biomedical research Develop a larger research proposal that will address the role of societal involvement in governance challenges in this context.