Introduction

8.1 The Terms of Reference for the Inquiry refer to the privacy of ‘human genetic samples and information’. These words distinguish genetic ‘samples’ from information that may be derived from them. Almost all human biological samples can reveal genetic information by DNA analysis.^[1] In effect, therefore, the Inquiry must consider the privacy of all bodily samples that may be identified with an individual.^[2]

8.2 This chapter begins by examining the existing coverage of the Privacy Act 1988 (Cth) (Privacy Act) as it relates to genetic samples. The Inquiry has concluded that the 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.

8.3 The chapter then examines why, in the Inquiry’s view, the coverage of the Privacy Act should be extended to cover genetic samples. These reasons include the following:

• genetic samples are closely analogous to other sources of personal information that are covered by the Privacy Act and should be protected by rules that are consistent with those applying to the genetic information derived from samples;
• there are gaps in the existing framework for protecting the privacy of individuals from whom genetic samples are taken or derived;
• these gaps might be usefully remedied if the National Privacy Principles (NPPs) or a set of similar privacy principles were to apply to genetic samples; and
• no circumstances have been identified in which applying the Privacy Act to genetic samples would lead to adverse consequences for existing practices involving the collection and handling of genetic samples.