Need for effective liaison

5.163 In DP 66, the Inquiry proposed that the HGCA ‘should liaise closely with relevant government departments, authorities and entities to promote a national approach to the protection of human genetic information’.^[168] The Centre for Law and Genetics noted that:

This is perhaps the most important Proposal in relation to the HGCA. The Inquiry demonstrated that there is no uniform national coordination of the myriad issues in human genetics. There is a mosaic of organizations, public and private … that are involved in consideration of issues involving human genetics.^[169]

5.164 The Queensland Government also commented on the importance of this aspect, submitting that:

A national approach to the protection of human genetic information can only be achieved through close working relationships with government and non-government bodies. There is clearly potential for an overlap in roles between the proposed HGCA and other established bodies. Therefore, in order for the proposed HGCA to function effectively as an advisory body, close liaison with government and non-government entities would be essential. Close liaison with business and community stakeholders, especially health and insurance industry and consumer bodies would be essential, particularly if open public hearings are not conducted.^[170]

5.165 While noting the obvious importance of effective liaison, the submission from Senator Natasha Stott Despoja also warned against the dangers of becoming pre-occupied with consultation to the detriment of effective policy development and service delivery:

I agree that the proposed HGCA should liaise closely with other relevant governmental departments, authorities and entities to promote a national and coordinated approach to the protection of human genetic information. However, legislative requirements for wide-ranging consultation should not be so onerous that the entire process is allowed to delay the introduction of federal laws to protect human genetic information. Such a problem exists currently in the United States of America where vested interests, party politics, and other purportedly more urgent legislative matters have conspired to delay the passing of numerous genetic privacy bills through the Congress. Indeed, the gridlock that exists has meant that many hundreds of individuals have already been, and hundreds of thousands more will soon be, seriously hurt by the absence of satisfactory, all-encompassing genetic privacy legislation.^[171]

5.166 The Inquiry affirms its view that it will be necessary for the HGCA to maintain close liaison with relevant government departments and authorities, to ensure that there is no duplication of efforts, nor any gaps in coverage with respect to the effective protection of human genetic information. As the length and scope of this Report amply demonstrate, human genetic information is already used across a wide array of contexts, and this is likely to increase over time. Responsibility for most of these activities will be shared across departments and authorities, and at both the federal, state and territory levels. Apart from government instrumentalities, there are many other key stakeholders—interested individuals, genetic support groups, researchers, professional associations, industry bodies, trade unions, and so on.

5.167 One of the functions of effective liaison will be to ensure that the wide variety of bodies with an interest in human genetics will be able to coordinate their efforts, rather than duplicate them.

5.168 As an indication of the types of liaison, the Inquiry suggests that there be regular communication and consultation with, among others:

• the NHMRC and its Principal Committees (including AHEC), the Embryo Research Licensing Committee, and the Gene Therapy Research Advisory Panel;
• the Australian Health Ministers Advisory Council and its working parties;
• the Commonwealth Department of Health and Ageing, and state and territory counterparts;
• the Medical Services Advisory Committee, the Pharmaceutical Benefits Advisory Committee, Public Health Partnerships, and professional associations such as the Human Genetics Society Australasia;
• the Commonwealth Department of Education, Science and Training, as well as other bodies responsible for research funding and management (such as the Australian Research Council and the NHMRC’s Research Committee), as well as for the design and delivery of educational programs;
• the Office of the Gene Technology Regulator;
• the Therapeutic Goods Administration;
• the National Pathology Accreditation Advisory Council;
• the Office of the Federal Privacy Commissioner, state privacy commissioners, and those who hold similar positions in the health privacy field in the States and Territories;
• Biotechnology Australia;
• the Australian Law Reform Commission;
• the Human Rights and Equal Opportunity Commission, and state and territory counterparts; and
• other relevant stakeholders in the public and private sectors, including genetic support organisations, professional associations, and industry bodies.