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

生物库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一个系统的证据基础 和生物库在非洲从招募阶段到调查结果的反馈。这将涉及到 涉及六个非洲国家的三个相互关联的研究项目；加纳、肯尼亚、冈比亚、 尼日利亚、坦桑尼亚和南非。项目1旨在探索创新的方法 将聚合的基因组研究成果返回给研究参与者和社区 使用H3Africa AWI-Gen项目的加纳、肯尼亚和南非的农村和城市环境 基础设施和研究计划，以人群为基础的心脏代谢疾病研究， 作为案例研究。在项目2中，我们将进行一项案例研究，旨在探索人们的态度和 肾脏基因组研究中受试者及其家属的偏好 疾病对个体基因研究成果的反馈，以检验家庭的作用 发回个别基因研究结果，并探讨持份者对 反馈加纳、尼日利亚和坦桑尼亚的个体基因发现。项目3将专注于 关于支持基因组的同意模式的社区调查视角 人类寄主、病原体和媒介寄主的多基因组研究 和病原体使用H3Africa PAMGen项目，一项疟疾遗传流行病学研究，如 一个案例研究。这些研究将得到ELSI核心和培训方案的支持，这些方案 将致力于培养一批社会科学家和行政首长实践者的能力。

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.