Part A. Introduction

5. A Human Genetics Commission of Australia

5–1 The Commonwealth should establish a Human Genetics Commission of Australia (HGCA) under federal legislation as an independent statutory authority with sufficient resources to fulfil its mission.

5–2 As a general matter, the role of the HGCA should be to provide:

  • on-going, high-level, technical and strategic advice to Australian governments about current and emerging issues in human genetics;
  • similar high-level advice on the ethical, legal and social implications arising from these developments, including consideration of any impact on human rights, and analysis of cost-benefit issues;
  • national leadership in managing the process of change in relation to human genetics, including engagement of the public on these issues;
  • relevant expertise and a consultative mechanism for the development of policy statements and national guidelines in this area, where appropriate in association with other government agencies or the relevant industries and organisations;
  • assistance with the development and coordination of community, school, university and professional education about human genetics;
  • advice and a consultative mechanism to assist relevant bodies in identifying strategic priorities for research in human genetics; and
  • a focus for the coordination and integration of various national—and perhaps regional and international—programs and initiatives.

5–3 The HGCA also should have specific role in:

  • identifying genetic tests that have particular concerns or sensitivities attached to them, and thus may require special treatment;
  • making recommendations about the suitability of specific genetic tests (and the appropriate analysis and treatment of results) for use by the insurance industry (for example for risk-rating purposes), and by employers (for example for occupational health and safety reasons);
  • performing any similar function or providing expert advice on any other matters relating to human genetics, whether on its own motion or in response to a formal reference from the responsible minister or ministers; and
  • monitoring the implementation of the broad strategies and specific recommendations identified in this Report.

5–4 The HGCA structure should involve at least two principal committees: (a) a Technical Committee, and (b) an Ethical, Legal and Social Implications Committee. However, this should not preclude the HGCA from establishing other committees or working groups (for example, on education, or community consultation) from time to time, as it sees fit.

5–5 Appointments to the HGCA should ensure a balanced and broad-based range of expertise, experience and perspectives relevant to the evaluation and delivery of genetic health services, and the use and protection of human genetic information and genetic samples. The appointments process should involve consultation with state and territory governments, relevant communities and other stakeholders.

5–6 The HGCA should operate in an open and transparent manner, to the greatest extent practicable, in order to promote public confidence and engage the wider community in uses of human genetic information.

5–7 The HGCA should be required to present an annual report to Parliament and also should be empowered to make such other reports to Parliament from time to time as it sees fit.

5–8 The HGCA should liaise closely with relevant government departments and authorities, as well as other key stakeholders, in order to promote a national approach to the protection of human genetic information.

5–9 The HGCA should be subject to a basic review two years after establishment, and then a more thorough, independent review after five years of operation.