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

BMC Medical Ethics - Tập 16 - Trang 1-12 - 2015
Paulina Tindana1, Jantina de Vries2, Megan Campbell3, Katherine Littler4, Janet Seeley5, Patricia Marshall6, Jennifer Troyer7, Morisola Ogundipe8, Vincent Pius Alibu9, Aminu Yakubu10, Michael Parker11
1Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana
2Department of Medicine, University of Cape Town, Cape Town, South Africa
3Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa
4Wellcome Trust, London, UK
5MRC/UVRI Uganda Research Unit on AIDS, Entebbe, Uganda
6Department of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, USA
7National Human Genome Research Institute, National Institute of Health, Bethesda, USA
8West African Bioethics Training Program, Center for Bioethics, Ibadan, Nigeria
9College of Natural Sciences, Department of Biochemistry and Sports Science, Makerere University, Kampala, Uganda
10National Health Research Ethics Committee, Federal Ministry of Health, Abuja, Nigeria
11The Ethox Centre, University of Oxford, Oxford, UK

Tóm tắt

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.

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