Disclosure 'downunder': Misadventures in Australian genetic privacy law

Wendy Bonython, Bruce Arnold

Research output: Contribution to journalArticleResearchpeer-review

3 Citations (Scopus)

Abstract

Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their consent, to genetic relatives, if it was to avoid or mitigate serious illness. Unfortunately, additional amendments required for operation of the disclosure amendment were overlooked. Public Interest Determinations (PIDs)-delegated legislation issued by the privacy commissioner-have, instead, been used to exempt healthcare providers from provisions which would otherwise make disclosure unlawful. This paper critiques the PIDs using documents obtained under the Freedom of Information Act-specifically the impact of both the PIDs and the disclosure amendment on patients and relatives-and confidentiality and the procedural validity of subordinate laws regulating medical privacy.

Original languageEnglish
Pages (from-to)168-172
Number of pages5
JournalJournal of Medical Ethics
Volume40
Issue number3
DOIs
Publication statusPublished - 1 Mar 2014
Externally publishedYes

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Genetic Privacy
privacy law
Disclosure
Privacy
public interest
amendment
privacy
act
freedom of information
medical ethics
Medical Ethics
Confidentiality
jurisdiction
Legislation
Health Personnel
illness
legislation
Law

Cite this

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Disclosure 'downunder' : Misadventures in Australian genetic privacy law. / Bonython, Wendy; Arnold, Bruce.

In: Journal of Medical Ethics, Vol. 40, No. 3, 01.03.2014, p. 168-172.

Research output: Contribution to journalArticleResearchpeer-review

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