Our Beyond Engagement theme critically examines different approaches of public engagement with science, biomedicine, and governance Theme Summary Politicians, scientists, clinicians, and wider publics have complex relationships with the processes, practices, and outcomes of public engagement with research. Different forms of engagement can be viewed as both an asset and barrier to policy development, health research, and service delivery across science, clinical and public health. Our Beyond Engagement theme explores critical understandings of public engagement with science and its governance. We attend to the institutional contexts and individual experiences of engagement that shape biomedicine, health research and care. We examine parallel developments in bioethical thinking, the evolution of research ethics, and the changing role of participants in science. Our theme pushes the idea of engagement beyond traditional forms of ‘public engagement’. We seek to include a broad range of activities that involve different people and groups in the research process, including patient-led research, patient and public involvement, citizen science, co-production in research, and research participation. Our core research questions include: How and when do different groups engage in biomedical and scientific innovation, and how do differing forms of engagement maximise the public good? What can engagements achieve, and how can engagement be transformed through critical and reflexive practice using social science and humanities perspectives? Engagement and Outputs Towards a feminist philosophy of engagements in health-related research This theme has published a position paper examining the roots and institutional frameworks of engagement. We consider issues of knowledge production within and through engagements, and how engagements are or could be valued and evaluated. Our core contribution is a feminist philosophy of engagements that can capture the diversity of practices, concepts and justifications around engagements. Using this philosophy, we account for the plurality of knowledges and kinds of value that engagements can bring, while remaining flexible and attentive to the structural conditions under which engagements occur. DIY science participation This theme explores case studies about community-led movements of non-professionals doing science and medicine outside professional science institutions and laboratories. We explore online and offline groups and communities that have been called ‘citizen scientists,’ ‘community scientists,’ and ‘do-it-yourself scientists’. These case studies – e.g. community-led DIY biology, DIY hormone therapy, and DIY COVID-19 responses – highlight what it means to move beyond conventional modes of public engagement with science and towards active community participation in the production of scientific and medical knowledge. We assess the implications of DIY science might be for mainstream science institutions and healthcare systems. Participatory public engagement in health data governance This theme studies public participation in health data governance and is involved in participatory public engagement approaches that can or could be used to design governance frameworks informed by or co-produced with the public. Our team has focussed on public engagement in population level research and data; in digital health and care; and around issues of uses of data by different sectors. Theme leads Sarah Chan Sarah Cunningham-Burley Researchers and partners Giulia De Togni Angela Marques Filipe Carol Porteous Jamie Webb This article was published on 2024-09-24
