Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa – CEBioGen
Ghansah Anita, Tindana Paulina
The Community Engagement in Biobanking and Genomics (CEBioGen) collaborative centre aims to build a systematic evidence base for effective community engagement for genomics and biobanking in Africa from the recruitment stage to feedback of findings. This will involve three interrelated research projects across six African Countries; Ghana, Kenya, The Gambia, Nigeria, Tanzania and South Africa. Project 1 will aim at exploring innovative ways of returning aggregate genomic research results to research participants and communities in rural and urban settings in Ghana, Kenya and South Africa using the H3Africa AWI-Gen project infrastructure and research program, a population-based study on cardiometabolic diseases, as a case study. In Project 2, we will conduct a case study aimed at exploring attitudes and preferences of research participants and their families in a genomic research study on kidney disease on feeding back individual genetic research findings, to examine the role of families in returning individual genetic findings and to explore stakeholders’ views on methods for feeding back individual genetic findings in Ghana, Nigeria and Tanzania. Project 3 will focus on investigating community perspectives on the model of consent that can support genomic studies on the study of multiple genomes of the human host and pathogen and vector host and pathogen using the H3Africa PAMGen project, a malaria genetic epidemiology study, as a case study. These studies will be supported by an ELSI core and training programmes which will aim at developing the capacity of a cadre of social scientists and CE practioners.