Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research: A Qualitative Study of the Perspectives of Research Ethics Committee Members and National Research Regulators in a low Resource Setting.

Harriet Nankya, Vincent Pius Alibu, Edward Wamala, Enock Matovu, John Barugahare
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Abstract

To attain effective community engagement (CE) for genetics and genomics research (GGR) is a challenge. This study aimed to analyzed participants' perspectives on how to attain effective CE for GGR in Uganda. A cross-sectional qualitative study involving in-depth interviews with twenty research ethics committee members and three national research regulators was conducted. GGR is faced with; low genetic literacy among stakeholders, social implications, cultural attitudes towards GGR, and lack of specific guidelines for CE in GGR. Attaining effective CE in GGR should involve; development of guidelines for GGR streamlining CE; boosting stakeholders' Knowledge in GGR and CE; engagement beyond sensitization; and consensus decision-making. Overall, attaining effective CE in GGR requires addressing the key aspects unique to GGR.

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了解遗传学和基因组学研究中社区有效参与的主要考虑因素:对低资源环境下研究伦理委员会成员和国家研究监管机构观点的定性研究。
在遗传学和基因组学研究(GGR)中实现有效的社区参与(CE)是一项挑战。本研究旨在分析参与者对如何在乌干达遗传学和基因组学研究中实现有效社区参与的看法。研究人员对 20 名研究伦理委员会成员和 3 名国家研究监管人员进行了深入访谈。GGR 面临的问题有:利益相关者的遗传知识水平低、社会影响、对 GGR 的文化态度以及缺乏 GGR 中 CE 的具体指导原则。要在全球基因组研究中实现有效的遗传工程,应包括:制定全球基因组研究指导方针,简化遗传工程;提高利益相关者对全球基因组研究和遗传工程的认识;提高认识之外的参与;以及协商一致的决策。总之,要在全球治理报告中实现有效的行政首长协调,就必须解决全球治理报告所 特有的关键问题。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
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.
期刊最新文献
Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics. Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research: A Qualitative Study of the Perspectives of Research Ethics Committee Members and National Research Regulators in a low Resource Setting. Vulnerable Research Participant Policies at U.S. Academic Institutions. Considerations for the Design of Informed Consent in Digital Health Research: Participant Perspectives. Public Perspectives on Consent for and Governance of Biobanking in Japan.
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