What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.

Q1 Arts and Humanities
Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba, Janet Seeley
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引用次数: 0

Abstract

Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants' needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.

什么是非洲基因组研究的良好伦理实践?乌干达基因组研究参与者的观点。
以往的研究一直强调,利益相关者的参与对于确定和制定解决基因组研究伦理挑战的方案非常重要,尤其是在基因组研究相对较新的非洲地区。在本文中,我们从乌干达基因组研究参与者的角度出发,探讨了什么是良好的研究伦理实践。我们的研究是一项多地点定性研究的一部分,在乌干达、加纳和赞比亚探讨这些问题。我们有目的地抽取了不同利益相关者的样本,包括基因组研究参与者、研究人员、研究伦理委员会成员、政策制定者和社区成员。本文介绍了对 27 名参与糖尿病基因组研究的糖尿病患者的深入访谈结果。数据是通过半结构式访谈收集的。采用框架方法进行了人工专题内容分析。研究结果表明,研究参与者认为基因组研究必须满足三项关键要求,才能更好地满足研究参与者的需求和实际情况:(1) 在同意过程中不再强调专家和机构的作用,(2) 明确反馈时间和性质,既要反馈与个人健康相关的研究结果,也要反馈研究的总体进展,(3) 在研究期间和之后为研究参与者提供更有效的支持。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Global Bioethics
Global Bioethics Arts and Humanities-Philosophy
CiteScore
5.00
自引率
0.00%
发文量
12
审稿时长
37 weeks
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