Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.

IF 1.7 4区哲学 Q2 ETHICS

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-13 DOI:10.1177/15562646251339221

Herani Sahlu Dembu, Hailemichael Getachew, Polly J Price, Jessica Sales, Liya Wassie

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引用次数: 0

Abstract

Human Genomic Research (HGR) has contributed to public health advancement by identifying disease susceptibility and resistance. However, HGR is surrounded by several ethical, legal, and societal concerns. This qualitative research study explored the perspectives of REC members in Ethiopia on the ethical challenges of HGR. Two focus group discussions consisting of nine REC members were conducted on November 24, 2022, and March 22, 2023. A thematic analysis was conducted using MAXQDA Analysis Software. The study highlighted several important ELSIs related to HGR, including the inadequacy of HGR literacy at all levels: research participants, researchers, and RECs; unsatisfactory quality of consent; the vulnerability of HGR participants; and the lack of a legal framework to govern the acquisition, storage, use, and sharing of genomic data. Therefore, improving HGR literacy at all levels and introducing a legal framework to govern the protection of research participants of HGR is urgently needed.

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研究伦理委员会对参与埃塞俄比亚人类基因组研究的挑战的看法。

人类基因组研究（HGR）通过确定疾病的易感性和耐药性，促进了公共卫生的发展。然而，HGR被一些伦理、法律和社会问题所包围。本定性研究探讨了埃塞俄比亚REC成员对HGR伦理挑战的看法。分别于2022年11月24日和2023年3月22日进行了两次由9名REC成员组成的焦点小组讨论。采用MAXQDA分析软件进行专题分析。该研究强调了与HGR相关的几个重要的elsi，包括各级HGR读写能力的不足：研究参与者、研究人员和rec；不满意的同意性质；HGR参与者的脆弱性；缺乏法律框架来管理基因组数据的获取、存储、使用和共享。因此，迫切需要提高各级对人类遗传资源的认识，并引入法律框架来管理对人类遗传资源研究参与者的保护。

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

Journal of Empirical Research on Human Research Ethics 医学-医学：伦理

CiteScore

3.50

自引率

7.70%

发文量

审稿时长

>12 weeks

期刊介绍： The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.