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

 

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dc.contributor.author Tindana, Paulina
dc.contributor.author de Vries, Jantina
dc.contributor.author Campbell, Megan
dc.contributor.author Littler, Katherine
dc.contributor.author Seeley, Janet
dc.contributor.author Marshall, Patricia
dc.contributor.author Troyer, Jennifer
dc.contributor.author Ogundipe, Morisola
dc.contributor.author Alibu, Vincent P
dc.contributor.author Yakubu, Aminu
dc.contributor.author Parker, Michael
dc.date.accessioned 2015-07-30T03:55:30Z
dc.date.available 2015-07-30T03:55:30Z
dc.date.issued 2015-04-12
dc.identifier.citation Tindana, 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.uri http://hdl.handle.net/11427/13590
dc.identifier.uri http://dx.doi.org/10.1186/s12910-015-0014-z
dc.description.abstract 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.
dc.rights This is an Open Access article distributed under the terms of the Creative Commons Attribution License *
dc.rights.uri http://creativecommons.org/licenses/by/4.0 *
dc.source BMC Medical Ethics en_ZA
dc.source.uri http://www.biomedcentral.com/bmcmedethics/
dc.subject.other Community engagement en_ZA
dc.subject.other Genetics en_ZA
dc.subject.other Genomic research en_ZA
dc.subject.other Africa en_ZA
dc.title Community engagement strategies for genomic studies in Africa: a review of the literature
dc.type Journal Article
dc.date.updated 2015-04-22T18:01:42Z
dc.language.rfc3066 en
dc.rights.holder Tindana et al.; licensee BioMed Central.
uct.type.publication Research en_ZA
uct.type.resource Article en_ZA
dc.publisher.institution University of Cape Town
dc.publisher.faculty Faculty of Health Sciences en_ZA
dc.publisher.department Department of Medicine en_ZA
uct.type.filetype Text
uct.type.filetype Image
dc.identifier.apacitation Tindana, 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/11427/13590 en_ZA
dc.identifier.chicagocitation Tindana, 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/11427/13590 en_ZA
dc.identifier.vancouvercitation Tindana 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.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


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