研究人员、科学政策制定者和研究伦理委员会成员对非洲基因组学研究中个人基因研究成果反馈的看法。

IF 3 1区 哲学 Q1 ETHICS BMC Medical Ethics Pub Date : 2024-06-07 DOI:10.1186/s12910-024-01068-2
Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman, Jantina de Vries
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引用次数: 0

摘要

背景:基因研究可能会产生与研究目的无关的信息,但这些信息可能会引起研究参与者的临床或个人兴趣。目前有一种新出现的、但有争议的责任,即归还某些基因研究成果,但关于非洲大陆基因组研究人员和其他人的观点,现有证据很少:我们在非洲大陆开展了一项调查,征求研究人员、科学政策制定者和研究伦理委员会成员对非洲基因组研究中个人基因研究成果反馈的看法:共有 110 人参与了调查,收到 51 份完整调查问卷和 59 份不完整调查问卷。数据采用描述性分析法进行总结。总体而言,我们的受访者认为,应将具有临床可操作性的个人基因研究结果反馈给研究参与者,这显然是因为参与者有权了解自己的健康状况,而且这也可能是研究参与得到认可的一种手段。然而,在非洲基因组学研究中,有必要就如何返还个人基因研究结果制定精确的指导意见:讨论:参与者应收到可促进更健康生活方式的信息;只应返还具有临床可操作性的研究结果,参与者应收到与其健康直接相关的所有重要信息。然而,详细的指导原则应告知哪些信息应予以反馈。H3Africa 指导方针规定,一般认为研究人员反馈一般研究结果是良好的做法,但对于是否也应反馈个别基因组研究结果却没有达成共识。决定反馈哪些个别结果(如果有的话)非常具有挑战性,具体情况对于做出适当的决定非常重要。
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Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Background: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.

Methods: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Results: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.

Discussion: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.

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来源期刊
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
期刊最新文献
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