PhD candidate Lydia Okoibhole’s project facilitates discussion with community members on the societal and ethical questions associated with cutting-edge sickle cell research. This will be used to create policy for scientists on how to navigate the ethical issues raised by their research, as well as offering recommendations for how to conduct community engagement at early stages of scientific discovery. The intended output includes new community engagement strategies that discovery scientists can use.
Lydia began the second year of her PhD in October 2024, focusing on the intersections of genomic research, healthcare systems, and community engagement in the context of Sickle Cell Disease (SCD) research. Her project seeks to understand the experiences, needs, and
perspectives of SCD-affected communities in the UK, examining barriers and enablers to engaging individuals with lived experience in genomics research. With a mixed-methods approach grounded in CommunityBased Participatory Research (CBPR) principles, the study combines quantitative surveys on public attitudes to genomics, qualitative focus groups with the SCD community, interviews with healthcare professionals, and a co-produced workshop on integrating findings and developing a community-informed framework of public engagement.
Community engagement is central to the project, acknowledging the historic marginalisation and systemic racism experienced by Black African and Caribbean communities disproportionately affected by SCD. Guided by critical race theory, the research prioritises collaborative and inclusive methods, including an advisory group of individuals with lived experience of SCD and partnerships with London based SCD community groups for recruitment and feedback. A planned co-produced workshop will ensure that community voices actively shape the research and its outcomes.
This study aims to provide insights into the needs and experiences of the SCD community, ensuring that advancements in discovery science are guided by those most affected. Additionally, it contributes to theoretical advancements in CBPR, offering a transferable framework for engaging other marginalised communities in genomic research.