Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana.
Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana.
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DOI：
10.1155/2022/3245206
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发表时间：
2022
期刊：
影响因子：
--
通讯作者：
de Vries J
中科院分区：
文献类型：
--
作者：
Kasule M;Matshaba M;Mwaka E;Wonkam A;de Vries J
人类健康与遗传（H3 Africa）联盟继续生成大量基因组数据，为非洲人群的健康和疾病提供新的见解。然而，这在参与制定、实施和应用伦理标准和政策以返还个人遗传研究成果的利益攸关方之间引发了辩论。关键的问题是什么时候必须、应该、可以或不可以返回结果，以及由谁返回。本研究旨在探讨博茨瓦纳研究人员、伦理委员会成员和政策制定者对个体相关和偶然遗传研究结果的反馈意见。 深入访谈了来自博茨瓦纳学术、研究机构和监管机构的16个主要利益攸关方。通过分析归纳的迭代过程对编码数据进行分析，以记录和解释主题和模式。 总体而言，研究人员至少有部分义务将个人遗传研究结果返还给研究参与者。答复者强调了自主的道德原则。他们认为，研究人员代表参与者做出关于返回结果的决定是不合适的，除非是在避免参与者自我伤害或对社会造成伤害的情况下。 调查结果有助于突出考虑参与者的自主权，在博茨瓦纳的基因组学研究结果的反馈，这可以在社区参与和同意过程中解释的可持续和可信的指导方针的发展的重要性。这些指导方针最终将用于制定政策，指导非洲基因组学研究，促进参与者的自主权、透明度，并可能促进参与者对研究的信任。
The Human Health and Heredity (H3Africa) Consortium continues to generate large amounts of genomic data leading to new insights into health and disease among African populations. This has however generated debate among stakeholders involved in developing, implementing, and applying ethical standards and policies for the return of individual genetic research results. The key questions are about when results must, should, may, or must not be returned and by whom. This study aimed to explore the views on the feedback of individual pertinent and incidental genetic research results of researchers, ethics committee members, and policymakers in Botswana. In-depth interviews were conducted with 16 key stakeholders from academic, research institutions, and regulatory bodies in Botswana. An analysis of the coded data was done through an iterative process of analytic induction to document and interpret themes and patterns. Overall, the study indicated that researchers have at least a partial obligation to return individual genetic research results to research participants. Respondents placed emphasis on the ethical principle of autonomy. They felt that it was inappropriate for researchers to make decisions about the return of results on participants' behalf except in situations of avoiding participant self-harm or harm to society. Findings helped to highlight the importance of considering participants' autonomy in the development of sustainable and credible guidelines for feedback of findings from genomics research in Botswana, which can be explained during community engagement and consent processes. Such guidelines would ultimately be used to develop policies, guide African genomics research, and promote participant autonomy, transparency, and possibly participant trust in research.
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影响因子：
5.5
作者：
Cohen, Deborah A.;Han, Bing;Derose, Kathryn Pitkin;Williamson, Stephanie;Marsh, Terry;McKenzie, Thomas L.
通讯作者：
McKenzie, Thomas L.
影响因子：
7
作者：
Eberle, Michael A.;Fritzilas, Epameinondas;Bentley, David R.
通讯作者：
Bentley, David R.
影响因子：
3.7
作者：
Mulder NJ;Adebiyi E;Adebiyi M;Adeyemi S;Ahmed A;Ahmed R;Akanle B;Alibi M;Armstrong DL;Aron S;Ashano E;Baichoo S;Benkahla A;Brown DK;Chimusa ER;Fadlelmola FM;Falola D;Fatumo S;Ghedira K;Ghouila A;Hazelhurst S;Isewon I;Jung S;Kassim SK;Kayondo JK;Mbiyavanga M;Meintjes A;Mohammed S;Mosaku A;Moussa A;Muhammd M;Mungloo-Dilmohamud Z;Nashiru O;Odia T;Okafor A;Oladipo O;Osamor V;Oyelade J;Sadki K;Salifu SP;Soyemi J;Panji S;Radouani F;Souiai O;Tastan Bishop Ö;H3ABioNet Consortium, as members of the H3Africa Consortium
通讯作者：
H3ABioNet Consortium, as members of the H3Africa Consortium
影响因子：
0.9
作者：
Williams, J. R.
通讯作者：
Williams, J. R.
影响因子：
2.1
作者：
Eckstein, Lisa;Garrett, Jeremy R.;Berkman, Benjamin E.
通讯作者：
Berkman, Benjamin E.