Ethical and legal implications of whole genome and whole exome sequencing in African populations
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Date
2013
Journal Title
Journal ISSN
Volume Title
Publisher
BioMed Central
Abstract
BACKGROUND: Rapid advances in high throughput genomic technologies and next generation sequencing are
making medical genomic research more readily accessible and affordable, including the sequencing of patient and
control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five
years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United
Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards
sequencing of numerous African samples for biomedical research.
DISCUSSION: Funding agencies and journals often require submission of genomic data from research participants to
databases that allow open or controlled data access for all investigators. Access to such genotype-phenotype and
pedigree data, however, needs careful control in order to prevent identification of individuals or families. This is
particularly the case in Africa, where many researchers and their patients are inexperienced in the ethical issues
accompanying whole genome and exome research; and where an historical unidirectional flow of samples and
data out of Africa has created a sense of exploitation and distrust. In the current study, we analysed the
implications of the anticipated surge of next generation sequencing data in Africa and the subsequent data sharing
concepts on the protection of privacy of research subjects. We performed a retrospective analysis of the informed
consent process for the continent and the rest-of-the-world and examined relevant legislation, both current and
proposed. We investigated the following issues: (i) informed consent, including guidelines for performing
culturally-sensitive next generation sequencing research in Africa and availability of suitable informed consent
documents; (ii) data security and subject privacy whilst practicing data sharing; (iii) conveying the implications of
such concepts to research participants in resource limited settings.
SUMMARY: We conclude that, in order to meet the unique requirements of performing next generation
sequencing-related research in African populations, novel approaches to the informed consent process are required.
This will help to avoid infringement of privacy of individual subjects as well as to ensure that informed consent
adheres to acceptable data protection levels with regard to use and transfer of such information.
Description
Keywords
African populations, Ethical, Legal and societal issues, Next generation sequencing, Whole genome, Whole exome sequencing
Citation
Wright, G. et al. (2013). Ethical and legal implications of whole genome and whole exome sequencing in African
populations. BMC Medical Ethics, 14(21): 2-15