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Disclosure ‘downunder’: misadventures in Australian genetic privacy law
  1. Wendy Bonython,
  2. Bruce Arnold
  1. School of Law, Faculty of Business, Government and Law, University of Canberra, Canberra, Australian Capital Territory, Australia
  1. Correspondence to Dr Wendy Bonython, School of Law, Faculty of Business, Government and Law, University of Canberra, Canberra, ACT 2601, Australia; wendy.bonython{at}canberra.edu.au

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 relativesand confidentiality and the procedural validity of subordinate laws regulating medical privacy.

  • Autonomy
  • Confidentiality/Privacy
  • Predictive Genetic Testing
  • Genetic Information
  • Informed Consent

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