Epistemic justice, African values and feedback of findings in African genomics research.
Epistemic justice, African values and feedback of findings in African genomics research.
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DOI：
10.1080/11287462.2022.2124019
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发表时间：
2022
期刊：
影响因子：
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通讯作者：
de Vries, Jantina
中科院分区：
文献类型：
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作者：
Ewuoso, Cornelius;Wonkam, Ambroise;de Vries, Jantina
本文借鉴了非洲哲学中基于重要价值观的关键规范性原则-团结，友谊和友好-批判性地深入思考非洲基因组学研究中返回个体遗传研究结果的伦理挑战。确切地说，我们认为，团结、尊重和友好的规范含义是，返回调查结果应被视为对参与者的善意姿态，因为它构成了为他们的福祉而行动。具体地说，友好的价值可能意味着，即使参与者对反馈的偏好是未知的，也应该向参与者返回可操作的结果。尽管如此，归还个人遗传结果将涉及费用问题。反馈的成本与非洲基因组研究项目有关，这些项目往往由国际赞助者资助，应进一步研究。
This article draws on key normative principles grounded in important values – solidarity, partiality and friendliness – in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may imply that one ought to return actionable results to participants even when their preferences regarding feedback are unknown. Notwithstanding, returning individual genetic results will have a cost implication. The cost of feeding back is relevant in the context of African genomics research projects, which are often funded by international sponsors and should be researched further.