Department of Philosophy, College of Humanities and Social Sciences, Makerere University, P. Box 7062, Kampala, Uganda.
Department of Biochemistry and Sports Science, College of Natural Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.
BMC Med Ethics. 2024 Nov 27;25(1):141. doi: 10.1186/s12910-024-01137-6.
Community engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda.
To analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform how communities could be ethically engaged in such research, in Uganda.
A cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus.
Thirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR.
This study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts.
社区参与（CE）是优化研究伦理诚信的关键策略之一。然而，关于如何有效地、伦理地进行 CE 的知识基础，特别是对于遗传学和基因组学研究（GGR），是有限的。在乌干达，没有从 GGR 的关键利益相关者（GGR 研究人员、普通社区和 REC 成员）在 CE 方面的经验中吸取教训。
分析关键利益相关者（GGR 研究人员、普通社区和 REC 成员）在 GGR 中参与社区的经验和观点，从而告知如何在乌干达以伦理的方式让社区参与此类研究。
在 Makerere 大学、乌干达病毒研究所和 Mulago 国家转诊医院进行了一项横断面定性研究。25 名 GGR 研究人员、20 名 REC 成员和 38 名社区成员参与了这项研究。使用深入访谈指南和焦点小组讨论收集数据。使用 NVivo 版本 12 Plus 对数据进行主题分析。
25 名 GGR 研究人员中有 13 名在其研究中进行了 CE，7 名 REC 成员曾审查过 GGR 方案，所有社区受访者都曾参与过 GGR。CE 的目标据报道取决于 GGR 的类型，要么是基础的，要么是应用的。CE 规划包括：定义社区，对于 GGR 来说，这包括与研究参与者没有直接关系但与参与者共享研究基因的个人；更大的 CE 预算来覆盖 GGR 的额外费用。CE 的进行据报道主要发生在样本收集阶段，很少发生在研究概念阶段，而且在研究结果返回阶段没有发生。CE 的实施包括：首先接触领导，以获得社区对研究的认可和接受；在 CE 团队中配备遗传咨询师，以处理 GGR 中的社会问题。
这项研究提供了在乌干达进行 GGR 中的 CE 所面临的挑战和促进因素。包括为所有利益相关者建立能力，特别是在 GGR 和 CE 方面的知识，以及利用这项研究的结果为政策、法规和进一步的研究提供信息，这将有可能促进乌干达和类似研究背景下的 GGR 中的伦理 CE。
