The protection of genetic privacy in South Africa : towards a legislative response based on a cross-jurisdictional review of legal developments
Date
2013-02-20
Authors
Govender, Sandra
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Abstract
The deciphering of the human genetic code in 2003 has been widely acknowledged as a major achievement in genetic science but it has given rise to a number of legal and ethical concerns, most notably that of the protection of genetic information. Universally, there are ongoing attempts to address this concern. This research proposes a suitable approach for South African law. It proceeds from the premise that the privacy paradigm, rather than the anti-discrimination paradigm, is better suited to the protection of genetic information, hence the discourse on genetic privacy. The unique challenges posed by genetic information are identified, with a focus on forensic DNA databases, genetic research databases, life insurance, employment, and genetic research involving human participants.
An in-depth analysis of the South African privacy protection framework is undertaken in order to determine its adequacy for the purpose of meeting the legal and ethical demands of genetic information. Aspects of the law of privacy, insurance, labour, evidence; medical law; philosophy and bioethics are accordingly traversed. A cross-jurisdictional review is undertaken with the aim of identifying lessons to be learnt from the experiences of the United Kingdom, Australia, Canada, the Netherlands, and the United States of America. Legislation, common law, codes of practice, court decisions, international conventions, legal literature, ethical guidelines, and industry developments pertaining to the selected jurisdictions, are studied with the aim of identifying strengths and weaknesses in the various approaches.
It is found that the current South African position is fragmented, complex, and in urgent need of reform. Another finding is that existing national and international ethical guidelines are not entirely adequate for the protection of genetic privacy. These findings, together with the lessons gleaned from the cross-jurisdictional review, lead to the conclusion that South Africa needs a specific genetic information protection statute for the protection of genetic privacy. This research culminates with recommendations regarding the content of the proposed statute.
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Keywords
Genetic information, Privacy, Protection, Ethics