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

Journal: BMC medical ethics

Volume: 16

Issue: 

Year of Publication: 2016

Affiliated Institutions:  Navrongo Health Research Centre, Ghana Health Service, P.O. Box , Navrongo, Ghana. ptindana@gmail.com. Department of Medicine, University of Cape Town, Office J-, UCT Centre for Clinical Research, Old Main Building, Groote Schuur Hospital, Observatory, , Cape Town, South Africa. Jantina.devries@uct.ac.za. Department of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur, Observatory, , Cape Town, South Africa. mm.campbell@uct.ac.za. Wellcome Trust, Gibbs Building, Euston Road, London, NW BE, UK. k.littler@wellcome.ac.uk. MRC/UVRI Uganda Research Unit on AIDS, P.O. Box , Entebbe, Uganda. janet.seeley@lshtm.ac.uk. Department of Bioethics, School of Medicine, Case Western Reserve University, Euclid Avenue, Cleveland, Ohio, -, USA. pam@case.edu. National Human Genome Research Institute, National Institute of Health, Bethesda, USA. troyerj@mail.nih.gov. West African Bioethics Training Program, Center for Bioethics, Bashorun Road, Ibadan, Oyo, State. morisola.ogundipe@westafricanbioethics.net. College of Natural Sciences, Department of Biochemistry and Sports Science, Makerere University, P.O. BOX , Kampala, Uganda. vpalibu@yahoo.com. National Health Research Ethics Committee, Federal Ministry of Health, Abuja, Nigeria. yaminads@yahoo.com. The Ethox Centre, University of Oxford, Oxford, UK. michael.parker@ethox.ox.ac.uk.

Abstract summary 

Community 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.We 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.A 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.We 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.

Authors & Co-authors:  Tindana Paulina P de Vries Jantina J Campbell Megan M Littler Katherine K Seeley Janet J Marshall Patricia P Troyer Jennifer J Ogundipe Morisola M Alibu Vincent Pius VP Yakubu Aminu A Parker Michael M

Study Outcome 

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Statistics
Citations :  Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, et al. Grand challenges in global health: community engagement in research in developing countries. PLoS Med. 2007;4(9):e273. doi: 10.1371/journal.pmed.0040273.
Authors :  12
Identifiers
Doi : 24
SSN : 1472-6939
Study Population
Male,Female
Mesh Terms
Africa
Other Terms
Study Design
Cross Sectional Study
Study Approach
Systemic Review
Country of Study
Publication Country
England