Introduction

12.1 This chapter considers whether, in view of the potential for individuals to access genetic testing services, there should be additional legal protection against the taking and testing of genetic samples without the knowledge and consent of the individual from whom the samples are derived.

12.2 The Inquiry has concluded that additional legal protection is required and that this should take the form of a new criminal offence. In addressing the issue, this chapter considers the harm sought to be remedied by the new offence, the inadequacies in the current law, and the reasons that criminal (as distinct from civil) penalties are justified. The legal elements of the new offence are also examined.

12.3 Biomedical technology currently enables genetic testing to be performed on minute bodily samples. The polymerase chain reaction method of genetic testing enables DNA from a single cell to be amplified many times to produce quantities of genetic material suitable for testing. Further, the ongoing development of automated ‘DNA chip’ technology will make it possible to obtain information about numerous genetic mutations simultaneously in a single test procedure.^[1]

12.4 Human genetic samples may be found nearly everywhere. Genetic information may be derived from easily accessible bodily samples such as hair follicles (humans shed hundreds of hairs every day), saliva left on a glass or cigarette, cheek cells left on a toothbrush, sloughed cells deposited on an item of clothing, or mucus in a tissue.^[2]

12.5 In combination, the power of biomedical technology and the ubiquity of human genetic samples leaves open the potential for bodily samples to be taken and tested without the knowledge or consent of the individual to whom they relate. In this chapter, this is referred to as non-consensual genetic testing.

12.6 Discussion of ‘genetic trophy hunters’ has become increasingly common in the media. Fear of genetic trophy hunters has been cited as the reason that bodyguards of former United States President, Bill Clinton, collected a pint glass after he had drunk from it in a British pub, to ensure that his DNA could not be obtained.^[3] Newspapers have also reported a ‘plot’ to obtain a sample of Prince Harry’s DNA—a girl would be used to set a ‘honey trap’ and pluck a strand of hair from his head.^[4] The media also reported extensively on claims that American movie mogul, Kirk Kerkorian, obtained DNA from dental floss in Steve Bing’s garbage bin in an attempt to prove that Bing had fathered a child by Kerkorian’s ex-wife. Bing in turn sued Kerkorian for trespass.^[5]

12.7 A link between ease of access to genetic testing and the potential for improper use of these services was made in a number of submissions. For example, Kathy Liddell stated:

Genetic information might be collected surreptitiously (eg from a sample of skin, hair roots or saliva) for unauthorised purposes. The risk of this is increased by the availability of over-the-internet and over-the-counter genetic services. Although this conduct would generally breach the Privacy Act or the common law, there is an argument that criminal penalties should apply.^[6]

12.8 The Office of the Federal Privacy Commissioner stated that it was concerned about

the problems involved in a person’s obtaining genetic information about an individual for the wrong reasons without the individual’s knowledge or consent, whether by mail-order or through DIY testing. This issue raises, among others, proof of bona fides, proof of the identity of the person requesting the test and possible criminal sanctions for the unlawful use of genetic information without the knowledge and consent of the individual. The [Privacy Act] provides general protection in many of these circumstances but developments in this area should be monitored closely.^[7]

12.9 The Department of Health and Ageing agreed that ‘over-the-counter’ testing created the potential for genetic testing of an individual without the individual’s knowledge or consent.

Current DNA profiling technologies enable accurate results from very small samples such as a hair and these can be easily obtained without a person being aware of it. Regulation of this practice raises difficulties because testing services are available internationally (often through internet marketing). Nonetheless, commercial and unaccredited laboratories exist in Australia and regulation of ‘DNA theft’ is an important issue which must be addressed.^[8]