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24.73 In DP 66 the Inquiry proposed the development of nationally consistent policies and practices in relation to the implementation and conduct of population genetic screening programs, covering such matters as informed consent, counselling and testing standards.[79]
24.74 This proposal met with general approval in submissions. Many submissions highlighted the need for tests used in population genetic screening programs to meet agreed standards for reliability, sensitivity and utility.[80] Members of the National Public Health Partnership Public Health Genetics Working Group suggested that a harmonised approach would facilitate the collection of more comprehensive information about programs, enabling them to be evaluated more effectively.[81]
24.75 The Australian Society of Medical Research noted that population screening and genetic registers ‘have been important components of the effective delivery of health care in this country’ and stated that the Society ‘would be concerned if new actions were taken that would make this genetic information regulated in a differential way to other sensitive medical information’.[82]
24.76 DP 66 also asked whether the Human Genetics Commission of Australia (HGCA) should play a role in regulating population genetic screening programs. Opinion was divided on this issue. Some suggested that the HGCA might set standards for evaluating programs and give advice on the development of policy.[83] Others considered that the HGCA should act as a regulatory body and assess whether tests and programs meet population screening standards.[84] The HGSA suggested the creation of a new national screening authority in Australia, similar to the NSC in the United Kingdom.[85]
[79] Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, DP 66 (2002), ALRC, Sydney, Proposal 21–1.
[80] M Delatycki, Submission G240, 20 December 2002; Cancer Council Victoria Cancer Genetics Advisory Committee, Submission G195, 27 November 2002; Law Society of New South Wales, Submission G285, 18 December 2002; D Robins, Submission G181, 29 October 2002; N Stott Despoja, Submission G198, 27 November 2002; K Monro and others, Submission G219, 3 December 2002; Centre for Genetics Education, Submission G232, 18 December 2002; Department of Health Western Australia, Submission G271, 23 December 2002; Genetic Support Council WA, Submission G243, 19 December 2002; Institute of Actuaries of Australia, Submission G224, 29 November 2002; Centre for Law and Genetics, Submission G255, 21 December 2002; Association of Genetic Support of Australasia, Submission G284, 25 December 2002; Office of the Federal Privacy Commissioner, Submission G294, 6 January 2003; Human Genetics Society of Australasia, Submission G267, 20 December 2002; Department of Human Services South Australia, Submission G288, 23 December 2002; Law Institute of Victoria, Submission G275, 19 December 2002; NSW Health Department, Submission G303, 13 January 2003.
[81] National Public Health Partnership Public Health Genetics Working Group, Consultation, Melbourne, 22 October 2002.
[82] Australian Society for Medical Research, Submission G124, 18 March 2002.
[83] Queensland Government, Submission G274, 18 December 2002; Centre for Genetics Education, Submission G232, 18 December 2002; Institute of Actuaries of Australia, Submission G224, 29 November 2002; N Stott Despoja, Submission G198, 27 November 2002; Centre for Law and Genetics, Submission G255, 21 December 2002.
[84] Law Institute of Victoria, Submission G275, 19 December 2002; M Delatycki, Submission G240, 20 December 2002.
[85] Human Genetics Society of Australasia, Submission G267, 20 December 2002.