title: Community engagement strategies for genomic studies in Africa: a review of the literature.
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.
  
  
  CONCLUSIONS
  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.affiliation: Navrongo Health Research Centre, Ghana Health Service, P.O. Box 114, Navrongo, Ghana. ptindana@gmail.com.
authors.forename: Paulina
authors.initials: P
authors.lastname: Tindana
authors.affiliation: Department of Medicine, University of Cape Town, Office J52-16, UCT Centre for Clinical Research, Old Main Building, Groote Schuur Hospital, Observatory, 7925, Cape Town, South Africa. Jantina.devries@uct.ac.za.
authors.forename: Jantina
authors.initials: J
authors.lastname: de Vries
authors.affiliation: Department of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur, Observatory, 7925, Cape Town, South Africa. mm.campbell@uct.ac.za.
authors.forename: Megan
authors.initials: M
authors.lastname: Campbell
authors.affiliation: Wellcome Trust, Gibbs Building, 215 Euston Road, London, NW1 2BE, UK. k.littler@wellcome.ac.uk.
authors.forename: Katherine
authors.initials: K
authors.lastname: Littler
authors.affiliation: MRC/UVRI Uganda Research Unit on AIDS, P.O. Box 49, Entebbe, Uganda. janet.seeley@lshtm.ac.uk.
authors.forename: Janet
authors.initials: J
authors.lastname: Seeley
authors.affiliation: Department of Bioethics, School of Medicine, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, Ohio, 44106-4976, USA. pam20@case.edu.
authors.forename: Patricia
authors.initials: P
authors.lastname: Marshall
authors.affiliation: National Human Genome Research Institute, National Institute of Health, Bethesda, USA. troyerj@mail.nih.gov.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Troyer
authors.affiliation: West African Bioethics Training Program, Center for Bioethics, 102 Bashorun Road, Ibadan, Oyo, State. morisola.ogundipe@westafricanbioethics.net.
authors.forename: Morisola
authors.initials: M
authors.lastname: Ogundipe
authors.affiliation: College of Natural Sciences, Department of Biochemistry and Sports Science, Makerere University, P.O. BOX 7062, Kampala, Uganda. vpalibu@yahoo.com.
authors.forename: Vincent Pius
authors.initials: VP
authors.lastname: Alibu
authors.affiliation: National Health Research Ethics Committee, Federal Ministry of Health, Abuja, Nigeria. yaminads@yahoo.com.
authors.forename: Aminu
authors.initials: A
authors.lastname: Yakubu
authors.affiliation: The Ethox Centre, University of Oxford, Oxford, UK. michael.parker@ethox.ox.ac.uk.
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
mesh_terms: D000349:Africa; D003256:Community Participation; D055812:Community-Based Participatory Research; D003159:Community-Institutional Relations; D036281:Genetic Research / Q000941:ethics*; D023281:Genomics; D006801:Humans; D012111:Residence Characteristics