Exploring key stakeholders’ perspectives on effective community engagement strategies to facilitate reporting aggregate genomic results to groups and communities:The Kenya Case study, CEBioGEN

Community engagement (CE) has gained prominence as an important ethical practice, for conducting genomic studies and bio-banking, particularly in Africa context. However, determining the effectiveness of CE strategies in supporting broad sharing of data and samples and the return of both individual genetic findings and aggregate genomic results to communities and groups remain a challenge. The overall goals of the Community Engagement in Biobanks and Genomics (CEBioGen) Collaborative Centre are to address this knowledge gap in CE and to build the capacity of a critical cadre of ethics and community engagement practitioners who can support the implementation of genomic and biobanking projects in the African continent. The Africa Wits-INDEPTH partnership for Genomic Community Engagement (AWI-GenCE) study (i) elicited key stakeholders' views on the value and purpose of CE in genomics, (ii) identifed the core competencies that are required for best CE practices, (iii) examine the key ways in which local communities should be involved in genomics and biobanking in Africa and (iv) which African moral theory should underpin CE in Africa. The findings from this study also feed into further development of several H3Africa guidelines and policies on consent, CE and feedback of findings. The study employed a mixed social science methodology to address the study research questions. In Kenya we conducted this study in three phases over a period of four years. This study budget is $19,008 for one year.