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Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model.
BMC Medical Ethics ( IF 3.0 ) Pub Date : 2019-10-18 , DOI: 10.1186/s12910-019-0398-2
Paulina Tindana 1, 2 , Aminu Yakubu 3 , Ciara Staunton 4 , Alice Matimba 5 , Katherine Littler 6 , Ebony Madden 7 , Nchangwi Syntia Munung 8 , Jantina de Vries 8 ,
Affiliation  

In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.

中文翻译:


让研究伦理委员会参与制定非洲基因组研究和生物样本库最佳实践的伦理和治理框架:H3Africa 模式。



在过去的十年中,非洲的基因组研究和生物样本库活动有所增加。非洲人类遗传与健康 (H3Africa) 联盟等研究举措正在促进科学能力和基础设施的发展,以支持非洲大陆的这些研究。尽管有这种增长,基因组研究和生物样本库仍给主要研究利益相关者(包括研究伦理委员会成员)带来了重要的伦理挑战。其中之一是指导基因组研究审查和实施的伦理和监管框架有限,特别是在非洲。本文反思了与非洲研究伦理委员会进行的一系列协商活动,这些活动为非洲基因组研究和生物样本库最佳实践的伦理和治理框架的发展提供了信息。本文重点介绍了参与过程和吸取的教训。
更新日期:2019-10-18
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