Privacy & data
What does whole-genome sequencing owe African participants?
Open access · cc by · source: Europe PMC
NGS makes WGS/WES feasible; African populations are uniquely diverse yet legally underspecified. The paper walks through consent, data sharing, return of results, incidental findings, and privacy against SA/US/EU law.
How this study connects
Role on claims
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Discoveries this paper informs or conflicts with
- Anti-doping surveillance would be unacceptable in any setting but this one
This paper informs this development.
Inspect source passages
What does whole-genome sequencing owe African participants?
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Tech shift?
next generation sequencing (NGS) methods in recent years has changed the scope of human genomic studies. These advances have made it feasible to routinely
WGS/WES?
whole genome sequencing (WGS) and whole exome sequencing (WES) studies, which together we subsequently refer to using the acronym ‘WGES’. The power of WGES
Key findings
Privacy includes control over dissemination of personal information. Consent, sharing, and incidental findings are the linked cluster. Foreign jurisdictions are a benchmark, not a copy-paste.
Methodology
The authors explain NGS-driven scope change, why African genomes matter, then examine South African legislation benchmarked on US and EU rules for consent, sharing, return of results, incidental findings, and the right to control dissemination of information about oneself.
Limitations
This is a legal-ethical map, not a new sequencing study. It does not settle one model statute.
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Same topic cluster — not a recommendation engine.