Information and health privacy legislation

7.6 The Inquiry has sought to assess the adequacy of existing privacy legislation as a framework for protecting the privacy of genetic samples and information and to make recommendations to better protect genetic privacy.

7.7 A key issue identified by the Inquiry is whether information and health privacy legislation should cover genetic samples as well as the genetic information derived from them. This issue is examined separately in Chapter 8. As discussed in more detail in that chapter, the Inquiry has concluded that the Privacy Act 1988 (Cth) (Privacy Act) does not cover genetic samples, even where they are identifiable to an individual, for example, where they have a name or other identifier attached. The Inquiry is of the view that the Act should be extended to cover genetic samples by expanding the definitions of ‘personal information’ and ‘health information’[5] to include bodily samples.[6]

7.8 This chapter briefly summarises the existing legislative framework for the protection of information and health privacy based on the Privacy Act and similar state and territory legislation and its application to the privacy of genetic information.

7.9 At present, national regulation of information privacy is provided by a complex, fragmented and overlapping set of federal, state and territory legislation. This chapter discusses whether there is a need for uniformity or greater harmonisation of laws concerning the privacy protection of human genetic information and, if so, on what basis.

7.10 The Inquiry has concluded that, while some inadequacies in the existing legislative privacy framework can be identified, these are best remedied through changes to general information and health privacy laws (including the Privacy Act), rather than through developing a new regulatory framework for the protection of genetic information specifically. This chapter examines the reasons for this conclusion.

7.11 On the assumption that the Privacy Act (amended as proposed in this Report) will continue to form the legislative underpinning for the privacy protection of genetic information, this chapter also examines a range of issues relating to the coverage of the Privacy Act.

[5]Privacy Act 1988 (Cth) s 6.

[6] There are other mechanisms through which privacy protection of genetic samples could be pursued. These include recognising new property rights in genetic material or amending the Human Tissue Acts to regulate the collection, storage, use of, and access to, genetic samples. These options are examined further in Ch 20.