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Table 2 Challenges and recommendations for ethical and legal issues for performing WGES studies in Africa

From: Ethical and legal implications of whole genome and whole exome sequencing in African populations

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