Developing the science and methods of community engagement for genomic research and biobanking in Africa.
Developing the science and methods of community engagement for genomic research and biobanking in Africa.
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DOI：
10.1017/gheg.2017.9
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发表时间：
2017
期刊：
影响因子：
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通讯作者：
H3Africa Community Engagement Working Group
中科院分区：
文献类型：
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作者：
Tindana P;Campbell M;Marshall P;Littler K;Vincent R;Seeley J;de Vries J;Kamuya D;H3Africa Community Engagement Working Group
历史上，社区参与研究一直是在公共卫生、教育和农业发展领域实施的。近年来，关于基因工程的伦理和实践目标的国际讨论已扩展到人类基因组研究和生物银行，特别是在非洲背景下。虽然普遍对行政教育的目标和价值有一些共识，但关于行政教育实践的有效性以及如何评估这种有效性的问题仍然存在。在非洲人类遗传与健康倡议（H3Africa）的主持下，H3Africa遗传与健康工作组于2016年3月在南非斯泰伦博斯组织了一次讲习班，探讨社区应在多大程度上参与基因组研究和生物银行，并审查评估遗传与健康有效性的各种方法。在本文中，我们提出了研讨会中出现的关键主题，并提出了一个案例，用于开发严格的应用程序，评估和学习围绕CE的方法，以促进更系统的过程参与相关社区。我们强调了CE应该嵌入基因组研究和生物银行项目的关键方式。
Historically, community engagement (CE) in research has been implemented in the fields of public health, education and agricultural development. In recent years, international discussions on the ethical and practical goals of CE have been extended to human genomic research and biobanking, particularly in the African context. While there is some consensus on the goals and value of CE generally, questions remain about the effectiveness of CE practices and how to evaluate this. Under the auspices of the Human Heredity and Health in Africa Initiative (H3Africa), the H3Africa CE working group organized a workshop in Stellenbosch, South Africa in March 2016 to explore the extent to which communities should be involved in genomic research and biobanking and to examine various methods of evaluating the effectiveness of CE. In this paper, we present the key themes that emerged from the workshop and make a case for the development of a rigorous application, evaluation and learning around approaches for CE that promote a more systematic process of engaging relevant communities. We highlight the key ways in which CE should be embedded into genomic research and biobanking projects.