Abstract
Rapid advances in human genomic research are increasing the availability of genomic data for secondary analysis. Particularly in the case of vulnerable African populations, ethics and informed consent processes need to be transparent-both to ensure participant protection, as well as to share skills and to evolve best practice for informed consent from a shared knowledge base. An open dialogue between all stakeholders can facilitate this.
Highlights
Rapid advances in human genomic research are increasing the availability of genomic data for secondary analysis
Genomic data-sharing and secondary use is the key to accelerating discovery and many initiatives such as the Global Alliance for Genomics and Health [4], and the H3Africa Bioinformatics Network [5] are enabling data-sharing
Consent for secondary use of data and samples is sensitive within Africa, for various reasons: localised cultural sensitivities, and the vast cultural and ethnic diversity across African populations, are not always appreciated by external researchers [9]; many African populations are vulnerable to exploitation because of low education levels, and poor access to health care may create dependence on study inclusion for access
Summary
Rapid advances in human genomic research are increasing the availability of genomic data for secondary analysis. * Correspondence: nicki@sanbi.ac.za 1South African National Bioinformatics Institute/Medical Research Council of South Africa Bioinformatics Unit, University of the Western Cape, Private Bag X17, Bellville 7535, South Africa Full list of author information is available at the end of the article to care [10,11]; and African governments, institutes, and researchers are wary of repeating the historical outflow of samples and data from the continent through collaborations outside Africa [12,13]. Institutional and governmental ethics review boards (IRBs) are currently the gate-keepers for re-use of African genomic data and for validating informed consent processes.
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