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12.34 Serious privacy and ethical concerns arise from non-consensual testing. The range of genetic information that can be derived from a bodily sample is wide and may have great importance and sensitivity for individuals, their families and their genetic relatives.
12.35 In the United Kingdom, the need for a new criminal offence was recently acknowledged by the HGC, which recommended that:
consideration be given to the creation of a criminal offence of the non-consensual or deceitful obtaining and/or analysis of personal genetic information for non-medical purposes.[37]
12.36 Many submissions to the Inquiry supported the idea that some kinds of non-consensual genetic testing should be criminalised.[38] For example, the Victorian Health Services Commissioner stated:
Privacy legislation has an important part to play, but may not be sufficient on its own. Genetic testing should never be allowed without consent, unless there are very special circumstances.[39]
12.37 The New South Wales Legal Aid Commission stated:
The main concern is the protection of the subject’s privacy, and their privacy is breached by the fact of another person having obtained the genetic information without consent, even if they do not use or disclose the information. This is particularly the case as it is most likely that a person seeking to obtain genetic information about a subject without their consent will be a family member or someone else close to the subject. In most cases the information will be of little interest to people outside the subject’s immediate circle, but access to the information by a friend or relative has the potential to affect the subject’s personal relationships.[40]
12.38 The Centre for Law and Genetics expressed strong support for the proposed criminal offence. In the view of the Centre, the proposal ‘addresses most of the potential abuses of DNA’.[41] The Commonwealth Attorney-General’s Department confirmed that the development of a model offence relating to non-consensual genetic testing is feasible.[42]
12.39 However, there was significant opposition to the new criminal offence from some quarters. For example, opposition was voiced by organisations and individuals who also opposed the Inquiry’s proposed reforms in relation to the regulation of parentage and other kinship testing[43] on the basis that such reforms are a barrier to the ‘right’ of fathers to know about the parentage of their children.[44] For example, the Men’s Confraternity WA stated:
The suggestion by the [Inquiry] that a father be prosecuted and have a criminal conviction recorded against him if he has a DNA test conducted on his child, if doubts arise as to his paternity, is in our view an outrage and borders on the obscene. By refusing a man the right to access his child’s DNA, he is being denied one of his basic human rights.[45]
12.40 Jonathon Baxter noted that the proposed new criminal offence would make it a criminal offence ‘in many cases for a father to determine his own paternity, without first applying to the family court’. He asked:
Given the family court’s long history of bias against fathers, particularly in relation to custody matters; given the vindictive nature of many ex-wives who would no doubt use such an application by the father to damage his relationship with his children; and finally, given the publicly stated, extreme views of [Chief Justice] Nicholson on the subject … how can you possibly make such a proposal?[46]
12.41 Another submission stated that:
to make it a criminal offence for a man to disprove an allegation of paternity is to deny that man his right to prove himself innocent of an allegation against him.[47]
12.42 As discussed in Chapter 35, the Inquiry recommends that, in general, parentage testing of children should be performed only with the written consent of all persons with parental responsibility for the child, or pursuant to a court order.[48] It can be assumed that those organisations and individuals who oppose these recommendations would also oppose the new criminal offence—at least in so far as it relates to non-consensual parentage testing by parents or putative parents—even if this was not expressly stated in submissions.
12.43 A number of recommendations contained in this Report address concerns about non-consensual testing. The recommendations in Chapter 11 in relation to accreditation standards and the regulation of direct to the public genetic testing are also intended, in part, to address concerns about non-consensual testing. As noted above, Chapter 35 focuses on the need to protect both adults and children from non-consensual parentage testing. However, these measures may not be sufficient.
Inquiry’s views
12.44 The Inquiry considers that there are compelling arguments in favour of creating a new criminal offence. Given the wide range of situations in which harm may be caused by non-consensual testing, the offence should cover a broad range of testing, rather than be confined to particular categories of testing, such as parentage or kinship testing.
12.45 In the Inquiry’s view, criminalising non-consensual genetic testing would not be disproportionate to the potential mischief to be avoided. In particular, given the difficulties in regulating access to, and the conduct of, genetic testing laboratories overseas, the threat of criminal prosecution of individuals in Australia may be the only effective deterrent. Useful analogies may be drawn with other acts that are already subject to criminal sanction.
12.46 The Inquiry does not consider that the Privacy Act should be the primary vehicle by which non-consensual genetic testing should be prohibited. It is appropriate that, in some circumstances, the use and disclosure of genetic information derived from non-consensual genetic testing constitute an interference with privacy under that Act. However, the focus of the Privacy Act is, and should remain, on regulating the practices of government and business rather than individuals in their private capacities. Further, where the Privacy Act is breached, the enforcement mechanisms may be seen as providing an inadequate sanction for non-consensual genetic testing.[49]
[37] Human Genetics Commission, Inside Information: Balancing Interests in the Use of Personal Genetic Data (2002), London, 62.
[38] K Liddell, Submission G141, 23 March 2002; Sydney IVF Limited, Submission G062, 14 January 2002; Cancer Council Victoria Cancer Genetics Advisory Committee, Submission G195, 27 November 2002; N Stott Despoja, Submission G198, 27 November 2002; Commonwealth Attorney-General’s Department, Submission G228, 12 December 2002; Centre for Law and Genetics, Submission G255, 21 December 2002; Centre for Genetics Education, Submission G232, 18 December 2002; Genetic Support Council WA, Submission G243, 19 December 2002; New South Wales Legal Aid Commission, Submission G282, 24 December 2002; Genetic Technologies Corporation Pty Ltd, Submission G245, 19 December 2002; Sydney IVF Limited, Submission G246, 19 December 2002; Anglican Diocese of Sydney, Submission G256, 20 December 2002; A Gesche, Submission G264, 20 December 2002; Department of Health Western Australia, Submission G271, 23 December 2002; Law Society of New South Wales, Submission G285, 18 December 2002; Law Institute of Victoria, Submission G275, 19 December 2002; Office of the Health Services Commissioner Victoria, Submission G307, 17 January 2003; Association of Genetic Support of Australasia, Submission G284, 25 December 2002; Department of Human Services South Australia, Submission G288, 23 December 2002; National Legal Aid, Submission G314, 19 February 2003. The HGSA submitted that ‘consent to medical genetic testing should not be brought within the scope of the criminal law’: Human Genetics Society of Australasia, Submission G267, 20 December 2002.
[39]Office of the Health Services Commissioner Victoria, Submission G307, 17 January 2003.
[40] New South Wales Legal Aid Commission, Submission G282, 24 December 2002.
[41] Centre for Law and Genetics, Submission G255, 21 December 2002.
[42] Commonwealth Attorney-General’s Department, Submission G228, 12 December 2002.
[43] J Dezordi, Submission G180, 4 September 2002; Men’s Rights Agency, Submission G213, 29 November 2002; Men’s Confraternity WA Inc, Submission G234, 17 December 2002; J Baxter, Submission G280, 27 December 2002; A Unger, Submission G192, 18 November 2002; R Kane, Submission G179, 4 September 2002.
[44] See Ch 35.
[45] Men’s Confraternity WA Inc, Submission G234, 17 December 2002.
[46] J Baxter, Submission G280, 27 December 2002.
[47] A Unger, Submission G192, 18 November 2002.
[48] See Recommendation 35–9.
[49] Enforcement of the Act is generally through resolution of individual complaints lodged with the Privacy Commissioner. When the Privacy Commissioner determines that a person’s privacy has been interfered with, the Commissioner can impose a number of penalties, including a declaration that the organisation should not repeat or continue the offending conduct, a request that the organisation redress the loss or damage incurred, or a request that the organisation pay compensation for any loss or damage incurred. The decisions of the Privacy Commissioner are enforceable by the Federal Court or the Federal Magistrates Court. See Privacy Act 1988 (Cth) Div 2–3. The Commonwealth Department of Health and Ageing noted that the Australian Health Ministers’ Advisory Council (AHMAC) National Health Privacy Code (see Ch 7) may include penalties for non-consensual testing: Commonwealth Department of Health and Ageing, Submission G313, 6 February 2003.