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Time to Get Serious about Privacy Policies: The Special Case of Genetic Privacy

Accepted version
Peer-reviewed

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Type

Article

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Authors

Nicol, Dianne 
Hagger, Meredith 
Ries, Nola 
Liddicoat, Johnathon 

Abstract

jats:p Genetic information is widely recognised as being particularly sensitive personal information about an individual and his or her family. This article presents an analysis of the privacy policies of Australian companies that were offering direct-to-consumer genetic testing services in 2012–13. The results of this analysis indicate that many of these companies do not comply with the Privacy Act 1988 (Cth), and will need to significantly reassess their privacy policies now that significant new amendments to the Act have come into force. Whilst the Privacy Commissioner has increased powers under the new amendments, the extent to which these will mitigate the deficiencies of the current regime in relation to privacy practices of direct–to-consumer genetic testing companies remains unclear. Accordingly, it may be argued that a privacy code for the direct-to-consumer genetic testing industry would provide clearer standards. Alternatively it may be time to rethink whether a sui generis approach to protecting genetic information is warranted. </jats:p>

Description

Keywords

Genetic information, direct-to-consumer testing, privacy laws

Journal Title

Federal Law Review

Conference Name

Journal ISSN

0067-205X
1444-6928

Volume Title

42

Publisher

SAGE Publications

Rights

All rights reserved