Openness and accountability

Open, transparent and inclusive processes

5.150 InDP 66, the Inquiry proposed that ‘As a general rule, meetings of the HGCA and its committees should be open to the public’.[153]In support of this proposal, the Inquiry wrote that:

as a general rule, meetings of the HGCA and its sub-committees should be open to the public (including media representatives), in order to ensure a high degree of transparency and accountability, maintain public confidence in the integrity of its operations, and promote public engagement.[154]

5.151 The submission from the Australian Academy of Science also emphasised the importance of openness:

It is important that discussions of matters of principle by this body should be conducted in public, so that the public is aware of the issues and the way in which differences of opinion are resolved.[155]

5.152 Proposal 3–6 received support from a number of quarters,[156] and especially from genetic support groups. For example, the Genetic Support Network of Victoria wrote that:

In fact we would take it a step further and say that not only should the meetings be open to the public as a gesture, but that the public should be openly invited to meetings and encouraged to participate.[157]

5.153 The Haemophilia Foundation Victoria submitted that:

This is an emotive issue with far reaching social and economic implications. As such, it is imperative that HGCA meetings be open to the public wherever reasonably possible. The public must be afforded the opportunity to comment upon recommendations in an informed and timely manner to ensure that the HGCA is ‘grounded’ by community concerns, issues and implications.[158]

5.154 Similarly, the Androgen Insensitivity Syndrome Support Group Australia stressed that:

Ensuring that meetings of both the Technical and Ethical/Social committees are open to the public, will ensure not only transparency of the proceedings but the potential for experts that may not form part of a committee to have a say about issues being discussed. Making known in advance subjects and issues for discussion at the Commission, would ensure widest possible consultation amongst genetics support and information groups and medical/scientific experts alike.[159]

5.155 No one argued against the proposition that the operations of the HGCA should be open, transparent and accountable. However, a number of submissions qualified their support for the proposal by pointing to practical concerns. For example, the Queensland Government wrote that:

It is recognised that it is important to ensure transparency and accountability and the development of public confidence in the proposed HGCA. However, open committee meetings may not always be a practical means of achieving the desired outcome and may encumber the proposed HGCA unnecessarily.[160]

5.156 The Department of Health of Western Australia wrote that it

agrees that the HGCA and its committees should be accountable and its operations transparent for the reasons stated in [DP 66, para] 3.154. However, meetings that are open to the public, including media representatives, have the potential to hinder frank and open discussion. Public/media attendance at meetings may stifle the expression of individual opinion or comments that may otherwise be expressed in a closed meeting. That is not to say that meeting agendas, resolutions, communiqués etc should not be made available to the public in a timely fashion. The operation of the gene technology committees established under the Gene Technology Act 2000 might provide a useful model.[161]

5.157 The Institute of Actuaries of Australia wrote that:

IAAust supports the proposal, noting particularly the inclusion of the words ‘as a general rule’. The Inquiry has recognised the sensitive nature of human genetic information, and the commercial nature of some industries where the use of genetic information may be important. It is imperative that committees of the HGCA must be allowed to meet in camera where appropriate, eg where sensitive personal information or commercial in confidence information is being discussed.[162]

5.158 The Centre for Law and Genetics noted that:

We agree with this Proposal [but] suggest that the proposed HGCA could follow the procedure adopted by the Council of the NHMRC that holds parts of its meetings as closed sessions but opens up a number of topics to the public and the press.[163]

5.159 The Centre for Genetics Educationsubmitted that, while it agreed with the general thrust of the Proposal, ‘it may not always be practicable. In those cases, the minutes of the meeting should be accessible to the public’.[164] This approach is taken, for example, by the OGTR, which publishes a public communiqué after its meetings, in which it identifies core issues and decisions of that meeting.[165]

5.160 The Inquiry maintains its view that the culture of the new HGCA should be one that places a high value on promoting open, transparent, and inclusive processes. However, the Inquiry also recognises that, as a practical matter, it would be neither practical nor desirable for every moment of every meeting of the HGCA or its committees and working groups to be open to the public. For example, a portion of those who made submissions to this Inquiry requested that these be kept confidential, owing to the sensitive, personal information disclosed. Similarly, the HGCA will have occasion to solicit and consider personally sensitive, or perhaps commercially sensitive, information. The HGCA and its committees also will need some space to reflect and to develop ideas, draft proposals and documents before these are made available for public comment and consultation. The original proposal was not intended to inhibit such routine institutional activities and the recommendations below have been re-worded to make this clearer.

Accountability and reporting requirements

5.161 As with all federal statutory authorities, the HGCA should be accountable to the Commonwealth Parliament for its activities and its use of public funds, through an Annual Report[166] and through the Senate Budget Estimates Committee process.

5.162 In keeping with its primary role of providing high level policy advice on human genetics to the Australian community, the enabling legislation should also specify that the HGCA may present such other reports to Parliament as it wishes to make from time to time.[167] As the HGCA will be an advisory body, it is not anticipated that its policy advice would be subject to administrative merits review.

[153] Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, DP 66 (2002), ALRC, Sydney, Proposal 3–6.

[154] Ibid [3.155].

[155] Australian Academy of Science, Submission G097, 21 January 2002.

[156] 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; Association of Genetic Support of Australasia, Submission G284, 25 December 2002; Sydney IVF Limited, Submission G246, 19 December 2002.

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

[158] Haemophilia Foundation Victoria, Submission G201, 25 November 2002. See also Australian Huntington’s Disease Association (NSW), Submission G268, 20 December 2002.

[159] Androgen Insensitivity Syndrome Support Group Australia, Submission G290, 5 January 2003.

[160] Queensland Government, Submission G274, 18 December 2002.

[161] Department of Health Western Australia, Submission G271, 23 December 2002.

[162] Institute of Actuaries of Australia, Submission G224, 29 November 2002.

[163] Centre for Law and Genetics, Submission G255, 21 December 2002.

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

[165] Office of the Gene Technology Regulator, Consultation, Canberra, 20 November 2002.

[166] See eg Research Involving Human Embryos Act 2002 (Cth) s 18.

[167] See eg Ibid s 19.