23.07.2010

Membership of the HGCA

5.138 Overwhelmingly, submissions to the Inquiry have strongly emphasised the need for balanced and broad-based membership, with both expert and community representation.[126] Similarly, a public opinion survey conducted by the University of Western Australia in 2000 found strong support for an advisory group that comprised members of the general public as well as scientists, medical professionals and others.[127]

5.139 The Commonwealth Department of Health and Ageing submitted that:

Should such a body be established, its composition should be broadly based and might include medical practitioners, ethicists, researchers, geneticists, privacy and anti-discrimination expertise, insurance and actuarial expertise, genetic counsellors and educators, lawyers, consumer representatives, disability advocates and media representatives.[128]

5.140 The Disability Discrimination Legal Service (DDLS) wrote that:

The DDLS considers that such a standing body should be established and that it includes researchers with specific expertise in genetic counselling and ethical concerns, representation that reflects the special and direct ways in which people with disabilities are affected by human genetic information, as well as broad community representation. Essential with this representation is the need to have consumer representation by groups directly affected by human genetic information—the ‘nothing about us without us’ principle. Great care should be applied to balancing representation of such a body to ensure that insurance and industry representatives do not have undue influence, particularly in consideration of issues relating to discrimination based on the use of human genetic information.[129]

5.141 The Genetic Support Network of Victoria added that:

We believe that people affected by genetic conditions are the most important stakeholders in a standing advisory body on human genetics (because if these people did not have genetic conditions, there would be little need for such an advisory body). Therefore we would expect to see people affected by genetic conditions well represented on the HGCA, with more than just ‘token’ representation. A national alliance of support organisations should certainly provide representatives for the Ethical, Legal and Social Implications [Committee].[130]

5.142 Other submissions highlighted the need to include:

  • clinical geneticists and medical practitioners;
  • genetic counsellors;
  • health and medical researchers;
  • representatives of genetic support groups and disability advocacy groups;
  • ethicists;
  • health consumer representatives;
  • lawyers (to cover privacy, discrimination and health law matters);
  • insurance industry representatives;
  • actuaries;
  • employers and trade union representatives;
  • science communicators;
  • medical records staff, health informaticists, information security experts, administrators and policy makers;
  • the current president of the HGSA;
  • pharmaceutical companies; and
  • the Australian Biospecimen Network.

5.143 The Inquiry agrees that the HGCA will need a wide spectrum of expertise, including both expert and community-based representation.[146] To the list above, the Inquiry would add representation from indigenous communities, given the importance and sensitivity of many of the issues in this area to Aboriginal and Torres Strait Islander communities.

5.144 As discussed above, the Inquiry believes that a national approach to laws, practices and systems is needed to protect human genetic information most effectively. Given the fact that many of the areas under review, including health care, are shared federal-state responsibilities, HGCA membership also should contain some jurisdictional balance, perhaps involving some positions dedicated to representatives from state and territory health departments.

5.145 Another strategy would be to consult the States and Territories with respect to other appointments. For example, the Chairs of the NHMRC, AHEC and the Embryo Research Licensing Committee only may be appointed by the federal Minister for Health and Ageing after consultation with State and Territory counterparts,[147] as well as other relevant Ministers and organisations.

5.146 The Victorian Department of Human Services noted that:

A body such as a Human Genetics Commission of Australia (HGCA) would provide an important focus for both technical and broader policy discussions and decisions concerning genetic information and testing. In providing expertise and advice to all Australian governments, and providing them with the opportunity to participate in its discussions and the development of its proposals, an HGCA would be particularly important, in view of the concentration of genetic health information held in the State public sector, governed by a variety of State laws.

Models of other national bodies often include membership of two State and Territory representatives, nominated by Government (and, in some instances, representing the smaller and larger States).

The role of such State/Territory nominees would be to provide a source of information on matters within the purview of the States and Territories to other members of the Commission, especially in relation to health and privacy legislation and policy. Such representation would be particularly relevant, in view of the Inquiry’s emphasis on a national/ uniform approach to legal responses to particular issues.[148]

5.147 The Inquiry suggests that membership of HGCA committees be on a part-time basis, in keeping with NHMRC practice: the sort of people who have the qualifications and experience to serve in this way already will have busy lives. In order to provide the drive and continuity for the organisation, however, the Inquiry suggests that the Chair/CEO position be a full-time one. The Deputy Chair position and such other Commissioners as are appointed could be full-time or part-time, depending upon workload, resources, and individual availability.

5.148 As is the case with appointments to the NHMRC,[149] including the new Embryo Research Licensing Committee,[150] appointments to the HGCA should be for a term of up to three years (as specified in each case in the instrument of appointment), with the possibility of re-appointment. In order to ensure continuity of operations, initial appointees to the HGCA should have staggered terms, so that only a third of the appointments can expire in any year. As noted above, the HGCA itself should have the power to appoint consultants and to co-opt persons to serve on ad hoc working groups and panels.[151]

[1] Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, IP 26 (2001), ALRC, Sydney [2.20].

[12] Province of Ontario, Report to Premiers — Genetics, Testing and Gene Patenting: Charting New Territory in Healthcare, <www.gov.on.ca/health/english/pub/ministry/geneticsrep02/report_e.pdf>, 20 February 2003.

[13] Ibid, Recommendations 14–15, xxi.

[14] Ibid, iv.

[15] See, for example, Association of Genetic Support of Australasia, Submission G284, 25 December 2002.

[126] Commonwealth Department of Health and Ageing, Submission G313, 6 February 2003; Human Genetics Society of Australasia, Submission G267, 20 December 2002; NSW Health Department, Submission G303, 13 January 2003; Australian Medical Association, Submission G212, 29 November 2002; Sydney IVF Limited, Submission G246, 19 December 2002; Centre for Genetics Education, Submission G232, 18 December 2002;Law Society of New South Wales, Submission G285, 18 December 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003; Confidential Submission G040CON, 14 January 2002; Human Genetics Society of Australasia, Submission G050, 14 January 2002; New South Wales Nurses’ Association, Submission G090, 21 January 2002; Australian Medical Association, Submission G091, 29 January 2002; Australian Academy of Science, Submission G097, 21 January 2002; Institute of Actuaries of Australia, Submission G105, 7 March 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G106, 26 February 2002; Queensland University of Technology, Submission G109, 14 March 2002; Office of the Privacy Commissioner (NSW), Submission G118, 18 March 2002; Neurofibromatosis Association of Australia Inc, Submission G121, 18 March 2002; Australian Society for Medical Research, Submission G124, 18 March 2002; Association of Genetic Support of Australasia, Submission G135, 19 March 2002; Confidential Submission G142CON, 25 March 2002; Disability Discrimination Legal Service, Submission G146, 28 March 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[127] University of Western Australia Survey Research Centre, Attitudes Towards Human Genome Epidemiology, University of Western Australia, <www.gshh.uwa.edu.au/survey.html>, 19 February 2003.

[128] Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[129] Disability Discrimination Legal Service, Submission G146, 28 March 2002.

[130] Genetic Support Network of Victoria, Submission G236, 23 December 2002.

[131] Human Genetics Society of Australasia, Submission G050, 14 January 2002; Human Genetics Society of Australasia, Submission G267, 20 December 2002; NSW Health Department, Submission G303, 13 January 2003; Australian Medical Association, Submission G212, 29 November 2002; Sydney IVF Limited, Submission G246, 19 December 2002; New South Wales Legal Aid Commission, Submission G282, 24 December 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003; Confidential Submission G051CON, 14 January 2002; Australian Medical Association, Submission G091, 29 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[132] Human Genetics Society of Australasia, Submission G267, 20 December 2002; NSW Health Department, Submission G303, 13 January 2003; Centre for Genetics Education, Submission G232, 18 December 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003; Confidential Submission G051CON, 14 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[133]Sydney IVF Limited, Submission G246, 19 December 2002; F Richards, Submission G044, 14 January 2002; Human Genetics Society of Australasia, Submission G050, 14 January 2002; Confidential Submission G051CON, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002; Sydney IVF Limited, Submission G062, 14 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[134] Genetic Support Network of Victoria, Submission G236, 23 December 2002;Genetic Support Council WA, Submission G243, 19 December 2002; Sydney IVF Limited, Submission G246, 19 December 2002; Australian Huntington’s Disease Association (NSW), Submission G268, 20 December 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003; New South Wales Legal Aid Commission, Submission G282, 24 December 2002; Confidential Submission G051CON, 14 January 2002; Sydney IVF Limited, Submission G062, 14 January 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G106, 26 February 2002; Neurofibromatosis Association of Australia Inc, Submission G121, 18 March 2002, Disability Discrimination Legal Service, Submission G146, 28 March 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[135] Human Genetics Society of Australasia, Submission G050, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[136] Association of Genetic Support of Australasia, Submission G284, 25 December 2002; Centre for Genetics Education, Submission G232, 18 December 2002; Genetic Support Council WA, Submission G243, 19 December 2002; Australian Huntington’s Disease Association (NSW), Submission G268, 20 December 2002; New South Wales Legal Aid Commission, Submission G282, 24 December 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003; F Richards, Submission G044, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002; Institute of Actuaries of Australia, Submission G105, 7 March 2002; Androgen Insensitivity Syndrome Support Group Australia, Submission G106, 26 February 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[137] NSW Health Department, Submission G303, 13 January 2003; F Richards, Submission G044, 14 January 2002; Human Genetics Society of Australasia, Submission G050, 14 January 2002; Confidential Submission G051CON, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[138] Sydney IVF Limited, Submission G246, 19 December 2002; F Richards, Submission G044, 14 January 2002; Human Genetics Society of Australasia, Submission G050, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002; Sydney IVF Limited, Submission G062, 14 January 2002; Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[139] Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[140] New South Wales Legal Aid Commission, Submission G282, 24 December 2002; F Richards, Submission G044, 14 January 2002; Australian Huntington’s Disease Association (NSW), Submission G054, 14 January 2002.

[141] Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[142] NSW Health Department, Submission G303, 13 January 2003.

[143] Department of Health Western Australia, Submission G271, 23 December 2002; Sydney IVF Limited, Submission G246, 19 December 2002.

[144] Eli Lilly Australia Pty Ltd, Submission G247, 19 December 2002.

[145] Australian Biospecimen Network, Submission G238, 19 December 2002.

[146] See National Health and Medical Research Council Act 1992 (Cth)s20.

[147] Ibid ss 21(2), 36(4). The NHMRC also contains representatives from each state and territory health authority: s 20(d). See also Research Involving Human Embryos Act 2002 (Cth) s 16. This position was supported in relation to the HGCA by Queensland Government, Submission G274, 18 December 2002.

[148] Department of Human Services Victoria – Metropolitan Health & Aged Care Services Division, Submission G289, 24 December 2002.

[149]National Health and Medical Research Council Act 1992 (Cth)s21(6).

[150]Research Involving Human Embryos Act 2002 (Cth) s 17(2).

[151] See Centre for Genetics Education, Submission G232, 18 December 2002.