Community Engagement conduct for Genetics and Genomics Research: a qualitative study of the experiences and perspectives of researchers, REC members, and research communities, in Uganda

Abstract

Background: 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. Aim: 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. Method: 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. Study findings: Thirteen GGR researchers had conducted CE in their research. The reasons for conducting CE were mainly instrumental including; to get the research accepted in the community. A few engaged for intrinsic reasons including; respect for community values. Researchers started their CE by defining the community for GGR. Community in GGR could include even individuals not directly involved in the research, but share genes with research participants. In the community, leaders were engaged first, to gain access and acceptance to conduct the research in the community. The conduct of CE was reported to mainly occur at sample collection and less at study conception, while never (had not) at the return of results stage. Engagement at conception was low because GGR researchers underestimate the community’s knowledge capability to make valuable contribution to genetic science, nor to inform the design of the study. Engagement in the return of results had not happened for any of the GGR projects recruited, and this was because of technical limitations and clinically relevant results were not yet derived and validated. Conclusion:The CE processes described by respondents indicated that what researchers actually conducted was ‘recruitment of communities for sample collection’ which was indicative of sub optimal CE.