20.1 The existing regulatory framework to protect the privacy of human genetic information focuses on the rights of individuals to control the collection, use and disclosure of their genetic information. However, human tissue samples can also yield genetic information. The Inquiry considers that, in order to protect genetic privacy effectively, both samples and information must be adequately regulated. A uniform approach to the regulation of samples and information is preferable, to avoid complexity, inconsistency and further fragmentation of privacy laws.

20.2 In Chapter 8 the Inquiry recommended that the Privacy Act 1988 (Cth) (Privacy Act), and similar state and territory health and information privacy legislation, should be amended to cover genetic samples, as well as the genetic information derived from them (Recommendation 8–2). Part of the reason for this recommendation was that if the Privacy Act does not cover genetic samples, there would be a major gap in the framework for protecting the privacy of the individuals from whom genetic samples are taken. Some other regime may have to be developed to fill the gap.

20.3 The Inquiry regards amendment of the Privacy Act as the most effective means of protecting genetic privacy in relation to samples. However this chapter considers two other possible approaches to regulating the handling of genetic samples and to providing the individuals from whom they are taken with greater control over what happens to the samples.

20.4 The chapter first discusses property rights in genetic samples and, in particular, whether the privacy of genetic samples and information could be more adequately protected by allowing any property rights, other than possession, to be exercised over genetic samples. The Inquiry considers that a property approach would be difficult to adopt, and that its drawbacks outweigh its benefits.

20.5 The chapter then examines whether the Human Tissue Acts should be amended to regulate comprehensively the collection, storage, use of, and access to, genetic samples. The Inquiry considers that amending the Human Tissue Acts would not adequately address the issue of sample privacy, although the Inquiry recognises the need for a general review of those Acts.