Structure of the HGCA

5.125 Given the wide-ranging brief of the HGCA and the probable substantial size of the potential membership group (see below), an effective structure might resemble that of the NHMRC, which involves a central Council with substantial diversity,^[116] and a number of principal committees,^[117] as well as other committees and working groups established from time to time for specific purposes.

5.126 In DP 66, the Inquiry suggested that:

Without wishing to be overly prescriptive at this stage, it appears to the Inquiry that the HGCA would need at least two principal committees of its own, including:

· a Technical Committee—to provide the required technical, scientific and medical advice needed; and

· an Ethical, Legal and Social Implications Committee—to ensure that such matters and a broad range of social perspectives are always given full consideration.

Most, if not all, of the policy advice sought from the HGCA will involve a mix of these issues—for example, the identification of ‘sensitive’ genetic tests that require restricted access or additional counselling and support; advice to the TGA about risk classification; and advice to insurers and employers about permissible uses and interpretations of genetic testing—so that the Committees often will need to sit together, or at least contain some degree of cross-membership.^[118]

5.127 The submissions strongly supported this general approach.^[119] For example, the Centre for Law and Genetics wrote that:

The Proposal to establish at least a Technical and ELSI Committee follows the pattern of the National Health and Medical Research Council Act 1992 (Cth) and the Gene Technology Act 2000 (Cth). Both Acts include provision for the establishment of principal committees. A Technical and an ELSI Committee are good candidates. We presume that the legislation would also include provision to appoint other principal committees, in the manner of the NHMRC legislation.^[120]

5.128 The Commonwealth Department of Health and Ageing agreed that:

The function proposed for a high-level advisory body and the range of issues which need to be addressed would warrant the establishment of a Technical Committee and an Ethical, Legal and Social Implications Committee. A broad range of expertise and a process of community consultation would assist in fostering community confidence in the proposed body. Experience in other areas of biotechnology suggests that community confidence in expertise and independence of the advisory body would be critical to public acceptance of action based on its recommendations. Strict conflict of interest guidelines would have to be developed for each committee.^[121]

5.129 A number of submissions also proposed the addition of another standing committee or two. Several noted the strong emphasis on education throughout DP 66, and suggested this should be reflected in the committee structure of the HGCA. For example, the HGSA wrote that:

Throughout the discussion paper, education has been highlighted as a major function of the HGCA. An Education Committee should be added as a principal committee.^[122]

5.130 Similarly, the Centre for Genetics Education submitted that:

Given the focus that education has been given in the Discussion Paper, the HGCA would benefit from having an Education Committee as a separate principal committee in addition to those proposed. Education will need to address technical, ethical, legal and social issues.^[123]

5.131 Several submissions also called for the HGCA to have a separate, formal, community consultative committee, along the lines of that of the OGTR in Australia. For example, Privacy NSW submitted that:

The proposed structure for the HGCA should include a mechanism to provide for due weight to be given to the views of community groups including consumer and minority groups. For this reason, we favour the structure of the Office of the Gene Technology Regulator which includes a broad-based community committee, the Gene Technology Community Consultative Committee (GTCCC). A similar approach should be adopted in relation to the regulation of human genetics technology.^[124]

5.132 The NSW Health Department suggested that the HGCA should also encompass a committee on clinical genetic services:

Principal committees should also include clinical services. Medical practitioners and genetic counsellors are at the forefront of patient access to genetics information and services.^[125]

5.133 The Inquiry agrees that education will be an important aspect of the work of the HGCA, and that body will have important things to say about the effective and efficient delivery of clinical genetic services. The Inquiry also agrees that engagement of the general public, and involvement of the genetic support community in particular, will be vital to the success of the HGCA.

5.134 However, the Inquiry prefers to leave such detailed organisational arrangements for the HGCA itself. For example, rather than waiting for ministerial appointments to a principal committee on education, the HGCA may prefer the flexibility of making its own staff appointments to an internal Education Unit, or it may prefer to establish an educational working group or advisory committee, or commission particular educational projects from other providers.

5.135 Similarly, the HGCA may wish to follow the UK HGC’s approach of establishing, through its own initiative, a large, voluntary Community Consultative Panel, rather than having a statutorily-prescribed Community Consultative Committee along the lines of the OGTR. Although no one disputed the importance of community consultation, the Inquiry heard differing views about the effectiveness of the OGTR model during it own consultations. For example, some people suggested that the functions of the Community Consultative Committee and the Ethical, Legal and Social Issues (ELSI) Committee were not clearly differentiated, especially where the latter contained community and consumer representatives. Others commented that the three committees needed to interact more frequently, and that the ELSI and technical committees needed to hear community perspectives more often, but that this was made more difficult by the organisational structure.

5.136 The Inquiry also is mindful of the efforts by the NHMRC to improve communication and consultation with Aboriginal and Torres Strait Islander communities. After some years of experimentation with different models, the NHMRC recently has opted against having a separate committee dealing with indigenous health issues, and instead adopted the approach of promoting coordination among indigenous representatives across all of the NHMRC committees, through the new Indigenous Health Forum.

5.137 No doubt other issues will arise from time to time in which the HGCA may believe that the best way to inform itself—or to promote community education, consultation and debate—will be through the establishment of an ad hoc committee or working group. The Inquiry believes that the formal structure of the HGCA should be open enough to enable it to be responsive to emerging issues and to operate flexibly in this manner.