Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa - CEBioGEN

生物银行和基因组学社区参与（CEBioGen）合作中心 旨在为基因组学的有效社区参与建立系统的证据基础 以及非洲的生物库，从招募阶段到结果反馈。这将涉及 三个相互关联的研究项目横跨六个非洲国家;加纳，肯尼亚，冈比亚， 尼日利亚、坦桑尼亚和南非。项目1旨在探索创新方法， 向研究参与者和社区返回汇总的基因组研究结果， 在加纳、肯尼亚和南非的农村和城市环境中使用H3非洲AWI-Gen项目 基础设施和研究计划，一项以人口为基础心脏代谢疾病研究， 作为案例研究。在项目2中，我们将进行一项案例研究，旨在探索态度， 肾脏基因组研究中研究参与者及其家庭的偏好 疾病对个人遗传研究结果的反馈，以研究家庭的作用 并探讨持份者对研究方法的意见， 反馈加纳、尼日利亚和坦桑尼亚的个体基因发现。项目3将重点 关于调查社区对同意模式的看法， 研究人类宿主和病原体及媒介宿主的多基因组 和病原体使用H3 Africa PAMGen项目，疟疾遗传流行病学研究， 案例研究这些研究将得到一个环境和社会一体化研究中心的核心和培训方案的支持， 将致力于发展社会科学家和CE实践者骨干的能力。

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.