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

BMC Medical Ethics

Michael Parker⁵  Aminu Yakubu¹  Vincent Pius Alibu⁴  Morisola Ogundipe^1,10  Jennifer Troyer³  Patricia Marshall⁶  Janet Seeley⁹  Katherine Littler^1,11  Megan Campbell⁷  Jantina de Vries²  Paulina Tindana⁸ 

[1] National Health Research Ethics Committee, Federal Ministry of Health, Abuja, Nigeria;Department of Medicine, University of Cape Town, Office J52-16, UCT Centre for Clinical Research, Old Main Building, Groote Schuur Hospital, Observatory, Cape Town, 7925, South Africa;National Human Genome Research Institute, National Institute of Health, Bethesda, USA;College of Natural Sciences, Department of Biochemistry and Sports Science, Makerere University, Kampala, Uganda;The Ethox Centre, University of Oxford, Oxford, UK;Department of Bioethics, School of Medicine, Case Western Reserve University, 10900 Euclid Avenue, Cleveland 44106-4976, Ohio, USA;Department of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur, Observatory, Cape Town, 7925, South Africa;Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana;MRC/UVRI Uganda Research Unit on AIDS, Entebbe, Uganda;West African Bioethics Training Program, Center for Bioethics, 102 Bashorun Road, Ibadan, Oyo, State;Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE, UK

关键词: Africa;    Genomic research;    Genetics;    Community engagement;   

Others  :  1175156
DOI  :  10.1186/s12910-015-0014-z

 received in 2014-08-26, accepted in 2015-03-16,  发布年份 2015

【 摘 要 】

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.

【 授权许可】

   
2015 Tindana et al.; licensee BioMed Central.

【 图 表 】

Figure 1.

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