Facing Our History—Building an Equitable Future

Jackson, Chazeman S.; Turner, Daria; June, Maya; Miller, Mona V.

doi:10.1016/j.ajhg.2023.02.005

Cited by 12 publications

(2 citation statements)

References 53 publications

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“…Some of their religious ideologies also contradict GGR since they see it as a manipulation of God's plan. These concerns have been reported even in the literature [36][37][38]. Such community values and concerns can be realized through CE to enable researchers to respect and address them.…”

Section: Discussionmentioning

confidence: 99%

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

Nankya,

Wamala,

Alibu

et al. 2024

BMC Med Ethics

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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.

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Section: Discussionmentioning

confidence: 99%

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

Nankya,

Wamala,

Alibu

et al. 2024

BMC Med Ethics

View full text Add to dashboard Cite

show abstract

“…And the field of human genetic diversity studies continues to thrive, but with greater attention to the rights of indigenous peoples. Although not formally associated with the HGDP, the Havasupai case in 2012 revolved around familiar issues: informed consent, researcher responsibilities, and the rights of participants [14,15]. Back in the 1990s the most problematic colonial aspects of the HGDP did not even have a name.…”

Section: Unintended Consequencesmentioning

confidence: 99%