Department of Philosophy, College of Humanities and Social Sciences, Makerere University, Kampala, Uganda.
Department of Biochemistry and Sports Science, College of Natural Sciences, Makerere University, Kampala, Uganda.
J Empir Res Hum Res Ethics. 2024 Oct;19(4-5):197-207. doi: 10.1177/15562646241289015. Epub 2024 Oct 21.
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.
实现遗传学和基因组学研究（GGR）的有效社区参与（CE）是一项挑战。本研究旨在分析参与者对如何在乌干达实现 GGR 有效 CE 的看法。进行了一项横断面定性研究，包括对二十名研究伦理委员会成员和三名国家研究监管机构的深入访谈。GGR 面临着以下问题：利益相关者遗传素养低、社会影响、对 GGR 的文化态度以及缺乏 GGR 中 CE 的具体指南。在 GGR 中实现有效的 CE 应该包括：制定 GGR 简化 CE 的指南；提高利益相关者在 GGR 和 CE 方面的知识；超越宣传的参与；以及共识决策。总的来说，在 GGR 中实现有效的 CE 需要解决 GGR 特有的关键方面。
