Evidence map›Paper›PMID 25889051›Full record

ReviewBMC medical ethics2015

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

Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu and 2 more

Open access · goldAbstract readReview
In one paragraph

Review in BMC medical ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 89 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
89citing papers in PubMed, 1 pooled it
9.3field-weighted citation impact, top 2% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

89 citing papers in PubMed, 1 synthesis or guideline pooled it, 151 citations in OpenAlex.

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  14. Engaging Communities and Empowering Research: Lessons from a Network of Community Engagement Cores.International journal of environmental research and public health · 2025
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29 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors at 8 institutions in 6 countries.

Paulina TindanaNavrongo Health Research Centre, Ghana Health Service, P.O. Box 114, Navrongo, Ghana. ptindana@gmail.com.
Jantina de VriesDepartment 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.
Megan CampbellDepartment of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur, Observatory, 7925, Cape Town, South Africa. mm.campbell@uct.ac.za.
Katherine LittlerWellcome Trust, Gibbs Building, 215 Euston Road, London, NW1 2BE, UK. k.littler@wellcome.ac.uk.
Janet SeeleyMRC/UVRI Uganda Research Unit on AIDS, P.O. Box 49, Entebbe, Uganda. janet.seeley@lshtm.ac.uk.
Patricia MarshallDepartment of Bioethics, School of Medicine, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, Ohio, 44106-4976, USA. pam20@case.edu.
Jennifer TroyerNational Human Genome Research Institute, National Institute of Health, Bethesda, USA. troyerj@mail.nih.gov.
Morisola OgundipeWest African Bioethics Training Program, Center for Bioethics, 102 Bashorun Road, Ibadan, Oyo, State. morisola.ogundipe@westafricanbioethics.net.
Vincent Pius AlibuCollege of Natural Sciences, Department of Biochemistry and Sports Science, Makerere University, P.O. BOX 7062, Kampala, Uganda. vpalibu@yahoo.com.
Aminu YakubuNational Health Research Ethics Committee, Federal Ministry of Health, Abuja, Nigeria. yaminads@yahoo.com.
Michael ParkerThe Ethox Centre, University of Oxford, Oxford, UK. michael.parker@ethox.ox.ac.uk.
as members of the H3A Working Group on Ethics
University of Cape Town · ZAFederal Ministry of Health · NGNational Human Genome Research Institute · USCase Western Reserve University · USCenter for Practical Bioethics · USNavrongo Health Research Centre · GHWellcome Centre for Ethics and Humanities · GBWellcome Trust Centre for the History of Medicine · GB

Funding

Wellcome Trust
6 · The paper itself

Abstract

backgroundCommunity 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.

methodsWe 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.

resultsA 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.

conclusionWe 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.

Indexed as

Community ParticipationGenomicsResidence CharacteristicsAfricaCommunity-Based Participatory ResearchCommunity-Institutional RelationsGenetic ResearchHumans

Identifiers

PMID25889051
PMCPMC4407431
OpenAlexW2091378032

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.