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非洲基因组学研究中个体遗传研究结果反馈指南。

Guideline for feedback of individual genetic research findings for genomics research in Africa.

机构信息

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, UK

Akili Labs (Pty) Ltd, Johannesburg, South Africa.

出版信息

BMJ Glob Health. 2022 Jan;7(1). doi: 10.1136/bmjgh-2021-007184.

Abstract

As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline for consideration of feeding back individual genetic results of health importance in African research projects. This included a decision flowchart, providing a logical framework to assist in decision-making and planning for human genomics research projects. Although presented in the context of the H3Africa Consortium, we believe the principles described, and the decision flowchart presented here is applicable more broadly in African genomics research.

摘要

随着非洲人类基因组学研究不断产生大量数据,如何与研究参与者共享可操作性遗传信息的伦理问题随之出现。人类遗传与健康非洲联合会(H3Africa)伦理与社区参与工作组认识到需要此类指导,确定了与非洲基因组学研究相关的关键问题和原则,并制定了一项实用指南,以考虑回馈非洲研究项目中具有重要健康意义的个体遗传结果。这包括一个决策流程图,为协助人类基因组学研究项目的决策制定和规划提供了一个逻辑框架。虽然本文件是在 H3Africa 联合会的背景下提出的,但我们相信,这里所描述的原则和所呈现的决策流程图在更广泛的非洲基因组学研究中同样适用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/942f/8753388/3d23d3c3c33d/bmjgh-2021-007184f01.jpg

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