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

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dc.contributor.authorTindana, Paulina
dc.contributor.authorde Vries, Jantina
dc.contributor.authorCampbell, Megan
dc.contributor.authorLittler, Katherine
dc.contributor.authorSeeley, Janet
dc.contributor.authorMarshall, Patricia
dc.contributor.authorTroyer, Jennifer
dc.contributor.authorOgundipe, Morisola
dc.contributor.authorAlibu, Vincent P
dc.contributor.authorYakubu, Aminu
dc.contributor.authorParker, Michael
dc.date.accessioned2015-07-30T03:55:30Z
dc.date.available2015-07-30T03:55:30Z
dc.date.issued2015-04-12
dc.date.updated2015-04-22T18:01:42Z
dc.description.abstractBackground: 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. Methods: 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. Results: 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. Conclusion: 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.
dc.identifier.apacitationTindana, P., de Vries, J., Campbell, M., Littler, K., Seeley, J., Marshall, P., ... Parker, M. (2015). Community engagement strategies for genomic studies in Africa: a review of the literature. <i>BMC Medical Ethics</i>, http://hdl.handle.net/11427/13590en_ZA
dc.identifier.chicagocitationTindana, Paulina, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, et al "Community engagement strategies for genomic studies in Africa: a review of the literature." <i>BMC Medical Ethics</i> (2015) http://hdl.handle.net/11427/13590en_ZA
dc.identifier.citationTindana, P., de Vries, J., Campbell, M., Littler, K., Seeley, J., Marshall, P., ... & Parker, M. (2015). Community engagement strategies for genomic studies in Africa: a review of the literature. BMC medical ethics, 16(1), 24.
dc.identifier.ris TY - Journal Article AU - Tindana, Paulina AU - de Vries, Jantina AU - Campbell, Megan AU - Littler, Katherine AU - Seeley, Janet AU - Marshall, Patricia AU - Troyer, Jennifer AU - Ogundipe, Morisola AU - Alibu, Vincent P AU - Yakubu, Aminu AU - Parker, Michael AB - Background: 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. Methods: 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. Results: 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. Conclusion: 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. DA - 2015-04-12 DB - OpenUCT DO - 10.1186/s12910-015-0014-z DP - University of Cape Town J1 - BMC Medical Ethics LK - https://open.uct.ac.za PB - University of Cape Town PY - 2015 T1 - Community engagement strategies for genomic studies in Africa: a review of the literature TI - Community engagement strategies for genomic studies in Africa: a review of the literature UR - http://hdl.handle.net/11427/13590 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/13590
dc.identifier.urihttp://dx.doi.org/10.1186/s12910-015-0014-z
dc.identifier.vancouvercitationTindana P, de Vries J, Campbell M, Littler K, Seeley J, Marshall P, et al. Community engagement strategies for genomic studies in Africa: a review of the literature. BMC Medical Ethics. 2015; http://hdl.handle.net/11427/13590.en_ZA
dc.language.rfc3066en
dc.publisher.departmentDepartment of Medicineen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.rightsThis is an Open Access article distributed under the terms of the Creative Commons Attribution License*
dc.rights.holderTindana et al.; licensee BioMed Central.
dc.rights.urihttp://creativecommons.org/licenses/by/4.0*
dc.sourceBMC Medical Ethicsen_ZA
dc.source.urihttp://www.biomedcentral.com/bmcmedethics/
dc.subject.otherCommunity engagementen_ZA
dc.subject.otherGeneticsen_ZA
dc.subject.otherGenomic researchen_ZA
dc.subject.otherAfricaen_ZA
dc.titleCommunity engagement strategies for genomic studies in Africa: a review of the literature
dc.typeJournal Article
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceArticleen_ZA
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