title: Data mining and biological sample exportation from South Africa: A new wave of bioexploitation under the guise of clinical care?
abstract: Discovery Health, one of the leading healthcare funders in South Africa (SA), will offer genetic testing to its members for USD250 (approximately ZAR3 400) per test from 2016. On the surface, this appears to be innovative and futuristic. However, a deeper look at this announcement reveals considerable problems in the exportation of biological samples and data out of SA, and brings into sharp focus the lack of protection in place for potential donors. In return for a reduced-cost genetic test, which will nevertheless be billed to a member's savings plan, data from the patient's results, and probably the sample itself, will be sent to the USA for storage, research purposes and possible commercial use, with no further benefit for the patient. This development has demonstrated the need for more stringent protection of the movement of biological samples and data out of SA, particularly with reference to consenting procedures, material transfer agreements, and the export of biological data themselves.
authors.affiliation: Centre for Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa. ciara.staunton@gmail.com.
authors.forename: Ciara
authors.initials: C
authors.lastname: Staunton
authors.forename: Keymanthri
authors.initials: K
authors.lastname: Moodley
mesh_terms: D035843:Biomedical Research / Q000941:ethics / Q000331:legislation & jurisprudence / Q000379:methods; D057225:Data Mining / Q000941:ethics / Q000331:legislation & jurisprudence; D005820:Genetic Testing / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D007258:Informed Consent; D038622:Internationality / Q000331:legislation & jurisprudence*; D013019:South Africa; D013048:Specimen Handling / Q000941:ethics / Q000379:methods