Community engagement strategies for genomic studies in Africa: a review of the literature

Abstract

BackgroundCommunity engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.MethodsWe conducted a review of the published literature to identify the community engagement strategies that can support the successful implementation of genomic studies in Africa. Our search strategy involved using online databases, Pubmed (National Library of Medicine), Medline and Google scholar. Search terms included a combination of the following: community engagement, community advisory boards, community consultation, community participation, effectiveness, genetic and genomic research, Africa, developing countries.ResultsA total of 44 articles and 1 thesis were retrieved of which 38 met the selection criteria. Of these, 21 were primary studies on community engagement, while the rest were secondary reports on community engagement efforts in biomedical research studies. 34 related to biomedical research generally, while 4 were specific to genetic and genomic research in Africa.ConclusionWe concluded that there were several community engagement strategies that could support genomic studies in Africa. While many of the strategies could support the early stages of a research project such as the recruitment of research participants, further research is needed to identify effective strategies to engage research participants and their communities beyond the participant recruitment stage. Research is also needed to address how the views of local communities should be incorporated into future uses of human biological samples. Finally, studies evaluating the impact of CE on genetic research are lacking. Systematic evaluation of CE strategies is essential to determine the most effective models of CE for genetic and genomic research conducted in African settings.

Evaluating community engagement in global health research: the need for metrics

“…An oft-cited concern with community engagement in research is the difficulty in assessing the effectiveness of community engagement in general, or of practices considered to be community engagement in particular [40]. In order to assess effectiveness, however, the desired goal needs to be clearly defined since it provides a logical foundation for developing appropriate indicators of success.…”

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

“…Our findings provide guidance for optimal integration of community perspectives into the design and implementation of research and the most effective strategies to implement public health policies and regulations informed by research as we engage with a range of stakeholders (including traditional and religious leaders) from rural and urban settings. We contribute to the growing literature describing ethical considerations for genomics research, the majority of which is not yet empirical in nature (e.g., Tindana and de Vries ; Tindana et al ). Our findings provide insight into challenges that need to be addressed to appropriately plan genomic research, health resources and services, and provision of necessary support for individuals affected with genetic disorders.…”

Hunter–gatherer genomics: evolutionary insights and ethical considerations

“…In addition to preventing unintended consequences, collaborative approaches that emphasize community partnerships and education have the potential to hold the interest of participants far beyond the duration of fieldwork [58]. A study on genetic risk factors for metabolic disease in Aboriginal Australians and Torres Strait Islanders is an exemplar of this strategy [59].…”

“…Finally, we and others strongly advocate for the presentation of results from genomic research studies to the participant communities [15,44,58] (Figure 1). As necessary, funds for return visits to the participant communities should be budgeted into grant proposals, and agencies that fund human subjects research should also have this expectation.…”