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.

Public Health Relevance

Project Title: Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa Project Name: Community Engagement in Biobanking and Genomics (CEBioGen) Overall component: Project Summary Community engagement (CE) has gained prominence as an important ethical practice, and good science, for conducting genomic studies and biobanking, particularly in Africa. However, determining the effectiveness of community engagement 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 is to address this knowledge gap 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 on the African continent. We seek to achieve these goals by conducting three collaborative research projects that aim at identifying best practices of community engagement for genomics and biobanking in African settings. Specifically, these projects will seek to elicit key stakeholders? views on the value and purpose of community engagement in genomics, identify the core competencies that are required for best CE practices, to examine the key ways in which local communities should be involved in genomics and biobanking in Africa and what African moral theory should underpin CE in Africa. While the primary focus of these projects will be on community engagement, the projects will address different ethical aspects of genomics and biobanking including how CE can support the informed consent process; the role of CE in Sample and data sharing and the role of CE in feedback of findings. The projects will be conducted in collaboration with three funded H3Africa projects; the Africa-Wits INDEPTH Collaborative Centre for Genomics of cardiometabolic diseases (AWI-Gen), the Kidney Disease Research Network (KDRN) and the Pan- African Malaria Genomic Epidemiology Network (PAMGen). This will provide a unique opportunity to address our project?s aims in different research contexts and settings and to ensure that our research is informed by actual research practice. The overall study will be supported by an ELSI Resource and Training core for training researchers and CE practitioners and developing and providing CE resources to the wider H3Africa Consortium.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Specialized Center--Cooperative Agreements (U54)
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Special Emphasis Panel (ZHG1)
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Madden, Ebony B
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Noguchi Memorial Institute / Medical Research
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