Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub-Saharan Africa.
Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub-Saharan Africa.
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DOI：
10.1002/eahr.500069
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发表时间：
2020-11-01
影响因子：
--
通讯作者：
de Vries, Jantina
中科院分区：
文献类型：
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作者：
Munung, Nchangwi Syntia;de Vries, Jantina
利益分享是一个道德问题，它强调需要在获取遗传资源和提供公平利益以换取获取之间找到平衡。人类基因组组织（HUGO）是参与人类基因组利益共享主题的少数倡议之一。然而，在人类基因组学研究的惠益分享需要什么以及如何在实践中实施方面缺乏明确性。本文报道了一项定性研究，探讨了撒哈拉以南非洲的一组基因组学研究人员的利益共享的观点和期望。总的来说，虽然研究人员对利益分享的认识很少，但在人类遗传学中，人们支持利益分享，这是基于公平、团结和互惠的原则。这一深入的探索性研究表明，非洲的基因组学研究联合会需要就利益分享问题进行公开讨论，并为非洲人口基因组学研究的利益分享制定伦理框架。雨果关于惠益分享的声明和《名古屋议定书》可以提供指导。
Benefit sharing is an ethical issue that underscores the need to find a balance between access to genetic resources and the provision of fair benefits in exchange for access. The Human Genome Organisation (HUGO) is one of the few initiatives to have engaged with the topic of benefit sharing in human genomics. However, there is a lack of clarity on what benefit sharing entails in human genomics research and how it could be implemented in practice. This paper reports on a qualitative study that explored the views and expectations of benefit sharing by a group of genomics researchers in sub-Saharan Africa. Overall, while there was little awareness of benefit sharing among the researchers, there was support for benefit sharing in human genetics, and this was based on principles of fairness, solidarity, and reciprocity. This in-depth explorative study demonstrates the need for genomics research consortia in Africa to have open discussions on benefit sharing and to develop ethics frameworks for benefit sharing in population genomics studies in Africa. HUGO's statement on benefit sharing and the Nagoya Protocol could provide guidance.