Table 2

Challenges and recommendations for ethical and legal issues for performing WGES studies in Africa
Issue Challenge Recommendation
Informed consent and data sharing Limited availability of informed consent documentation templates for genomic studies in African populations Journals and researchers should promote the public availability of these documents
Cultural and ethnic diversity in Africa Community engagement, rapid assessment processes and local field workers
Language differences Ensure the use of translators who are aware of cultural sensitivities
Limited data on local views on genomic data sharing and related concepts (e.g. privacy and stigmatisation) Generate empirical data on these concepts and opinions through relevant research
Disseminating secondary findings Lack of local policies and guidelines Perform studies on African research participants’ attitudes towards return of WGES results. Encourage IRBs/RECS to develop such documentation
Insufficient genetic counsellors and bioinformaticists Training programmes and the creation of posts for these professions
Limited understanding of the penetrance of genetic variants in African populations with unique genetic backgrounds and environmental exposures Investment in African WGES medical research and related infrastructure
Development of local legislation Current legislation is not drawn up with medical WGES research in mind The development of local legislation that is relevant for WGES research and in line with international best practices
Numerous African countries with different legislation Conduct jurisprudence studies that analyse relevant legislation in understudied African countries
Limited resources Poor education/literacy levels Development of unique, accessible educational materials
Limited numbers of IRBs/RECs and many members are not familiar with genomic principles Perform training workshops and ensure that funding is allocated to these groups
Ability to perform the equivalent of CLIA-validation in local laboratories may be lacking Analyse local laboratory standards and perform validation in foreign laboratories if necessary

Wright et al.

Wright et al. BMC Medical Ethics 2013 14:21   doi:10.1186/1472-6939-14-21

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