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Pharmacogenetic testing: legal considerations for consent, privacy and disclosure

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Romeo-Malanda, S and Nicol, D (2008) Pharmacogenetic testing: legal considerations for consent, privacy and disclosure. Personalized Medicine, 5 (2). pp. 155-161. ISSN 1741-0541

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Abstract

This review provides an overview of the European legal framework relating to the protection of sensitive data obtained from pharmacogenetic tests. The primary objective of pharmacogenetic testing is neither diagnosis nor prediction of disease, but determining likely responses to medicines based on specific genetic factors. Nevertheless, pharmacogenetic testing can lead to the disclosure of sensitive information and, as a consequence, it is argued that consent is a prerequisite. It is further argued that appropriate protection for privacy and confidentiality is crucial, but that disclosure may be justified in certain exceptional circumstances. This article describes the various European legislative instruments that provide useful guidance on the types of circumstances when disclosure may be justified.

Item Type: Article
Journal or Publication Title: Personalized Medicine
Page Range: pp. 155-161
ISSN: 1741-0541
Identification Number - DOI: 10.2217/17410541.5.2.155
Date Deposited: 05 Aug 2008 01:42
Last Modified: 18 Nov 2014 03:47
URI: http://eprints.utas.edu.au/id/eprint/7226
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