Lydia Okoibhole

PhD student
Engagement and Society

Lydia Okoibhole is a second year PhD student funded by Wellcome Connecting Science, based at the Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge. Her PhD research aims to understand the experiences, needs, and perspectives of communities affected by Sickle Cell Disease in the UK in relation to genomics research, specifically treatments and therapies.

Sickle cell disease (SCD) is a genetic disorder that predominantly affects individuals of African and Caribbean descent, causing severe health complications such as crises, chronic pain and an increased risk of infections and strokes. Current treatment options are limited; however, recent advancements in genomics, such as gene-editing, provide new options that could treat SCD and significantly improve patient outcomes. However, the effective engagement of the SCD community in genomics research remains a challenge due to historical mistrust, systemic healthcare inequities, and sociocultural barriers.

Using a mixed-methods approach grounded in Community-Based Participatory Research (CBPR) principles, this study investigates barriers and facilitators to engaging the SCD community in genomics research in the UK. The research design includes quantitative surveys to gather data on the public’s attitudes, qualitative focus groups and in-depth interviews to explore in-depth perspectives of the community and healthcare professionals, and co-produced workshops to integrate findings from the survey, interviews and FGDs and shape a final framework.

This research will provide valuable insights into the perspectives, needs, and experiences of the SCD community, informing the development of more effective and equitable healthcare policies and practices. 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.