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“这是一项委托”:撒哈拉以南非洲地区对基因组研究和生物样本库的广泛同意。

'It is an entrustment': Broad consent for genomic research and biobanks in sub-Saharan Africa.

作者信息

Tindana Paulina, Molyneux Sassy, Bull Susan, Parker Michael

出版信息

Dev World Bioeth. 2019 Mar;19(1):9-17. doi: 10.1111/dewb.12178. Epub 2017 Oct 23.

Abstract

In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub-region to facilitate future indigenous genomic studies. The concept of 'broad consent' has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision-making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework.

摘要

近年来,全球范围内用于遗传和基因组研究的生物样本库的建立数量有所增加。其中一个例子是非洲人类遗传与健康倡议(H3Africa),该倡议已在该次区域建立了生物样本库,以促进未来的本土基因组研究。“广泛同意”的概念已被提出,作为一种机制,使生物样本库中的潜在研究参与者能够允许其样本用于未来的研究。然而,这种同意模式的可接受性仍然存在问题。借鉴关于信任在决策中的作用的实证研究结果,我们认为委托账户可能是应对当前非洲生物样本库研究寻求同意的挑战的一种适当方式。我们提出了一组需要考虑的关键点,以支持提议的委托框架。

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