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