Ethical, legal and social issues in the context of the planning stages of the Southern African Human Genome Programme

dc.contributor.authorDe Vries, Jantina
dc.contributor.authorSlabbert, Melodie
dc.contributor.authorPepper, Michael Sean
dc.date.accessioned2014-09-18T07:38:53Z
dc.date.available2014-09-18T07:38:53Z
dc.date.issued2012
dc.description.abstractAs the focus on the origin of modern man appears to be moving from eastern to southern Africa, it is recognised that indigenous populations in southern Africa may be the most genetically diverse on the planet and hence a valuable resource for human genetic diversity studies. In order to build regional capacity for the generation, analysis and application of genomic data, the Southern African Human Genome Programme was recently launched with the aid of seed funding from the national Department of Science and Technology in South Africa. The purpose of the article is to investigate pertinent ethical, legal and social issues that have emerged during the planning stages of the Southern African Human Genome Programme. A careful consideration of key issues such as public perception of genomic research, issues relating to genetic and genomic discrimination and stigmatisation, informed consent, privacy and data protection, and the concept of genomic sovereignty, is of paramount importance in the early stages of the Programme. This article will also consider the present legal framework governing genomic research in South Africa and will conclude with proposals regarding such a framework for the future.en_US
dc.description.librarianam2014en_US
dc.description.urihttp://law.haifa.ac.il/users/rkaspi/waml/mnl.aspen_US
dc.identifier.citationDe Vries, J, Slabbert, M & Pepper, MS 2012, 'Ethical, legal and social issues in the context of the planning stages of the Southern African Human Genome Programme', Medicine and Law, vol. 31, pp. 119-152.en_US
dc.identifier.issn0723-1393
dc.identifier.urihttp://hdl.handle.net/2263/42026
dc.language.isoenen_US
dc.publisherInternational Centre of Medicine and Lawen_US
dc.rights© PROBOOK 2012en_US
dc.subjectEthicsen_US
dc.subjectGenomic researchen_US
dc.subjectInformed consenten_US
dc.subjectPrivacyen_US
dc.subjectStigmatisationen_US
dc.subjectSouthern African Human Genome Programmeen_US
dc.titleEthical, legal and social issues in the context of the planning stages of the Southern African Human Genome Programmeen_US
dc.typeArticleen_US

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