PhD candidate Lydia Okoibhole explores how communities affected by sickle cell disease engage with emerging genomic technologies and the ethical questions they raise. Her project co-produces strategies for equitable and trust-building engagement between scientists, clinicians, and communities, offering practical recommendations for integrating community perspectives into the design and governance of genomic research.
Lydia Okoibhole is a 3rd year PhD Student whose research focuses on exploring the intersections of genomic research, healthcare systems, and community engagement within the context of Sickle Cell Disease (SCD). She is specifically aiming to understand the experiences, needs, and perspectives of communities affected by SCD in the UK, focusing on existing and emerging treatments and therapies, with an emphasis on identifying the barriers and facilitators to engaging people with lived experience in genomics research and clinical care.
Using an approach grounded in Community-Based Participatory Research (CBPR) principles, this study’s research design includes qualitative focus groups with 18–29-year-olds with SCD, in-depth interviews with healthcare professionals and the wider SCD community, and a co-produced workshop to integrate findings and shape a theory of change framework. She will also be analysing secondary data from a public trust study.
Considering critical race theory, ‘black bioethics’ and recognising the historic marginalisation, systemic racism experienced by and the underrepresentation of communities disproportionately affected by SCD, specifically Black African and Caribbean communities in the UK, this project has been designed to prioritise collaborative and inclusive methods. This includes working with an advisory group made up of people with lived experience of SCD, working with SCD community groups in London for recruitment and feedback and conducting a workshop which produced a co-produced framework. These collaborations ensure that the communities’ voices are prioritised and actively shape research priorities and outcomes.
This research will ultimately provide valuable insights into the perspectives, needs, and experiences of the SCD community and seeks to ensure that advancements in SCD treatment are guided by the needs, voices, and experiences of the communities most affected, fostering trust and equitable access to genomics innovation. Furthermore, the study will contribute to the theoretical understanding of CBPR and its application in genomics research, offering a robust framework that focuses on community priorities and strategies which can be adapted to other marginalised communities.