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 |