Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda

Harriet Nankya; Edward Wamala; Vincent Pius Alibu; John Barugahare

doi:10.1186/s12910-023-00995-w

Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda

BMC Med Ethics. 2024 Jan 2;25(1):1. doi: 10.1186/s12910-023-00995-w.

Authors

Harriet Nankya¹, Edward Wamala², Vincent Pius Alibu³, John Barugahare²

Affiliations

¹ Department of Philosophy, College of Humanities and Social Sciences, Makerere University, P. O Box 7062, Kampala, Uganda. harrietana@gmail.com.
² Department of Philosophy, College of Humanities and Social Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.
³ Department of Biochemistry and Sports Science, College of Natural Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.

Abstract

Background: Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR.

Aim: To assess the perspectives of genetics and genomics researchers in Uganda on CE in GGR.

Method: A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus.

Study findings: Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR.

Conclusion: GGR was characterized by special issues that require special CE considerations for such research.

Keywords: Community Engagement; Experiences; Genetics and genomics research; Perspectives; Researchers; Uganda.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Cross-Sectional Studies
Female
Genetic Research*
Genomics*
Humans
Male
Qualitative Research
Uganda