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Human Genetics Advisory Committee (HGAC)

The Human Genetics Advisory Committee (HGAC) has been established to provide on-going advice on high-level technical and strategic issues in human genetics, and on the social, ethical and legal implications of human genetics and related technologies. The HGAC will also provide national leadership in responding to new developments in these technologies.

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Introduction

The establishment of the HGAC as an independent expert advisory body was part of the Government’s response to the Australian Law Reform Commission and Australian Health Ethics Committee’s report Essentially Yours – The Protection of Human Genetic Information. The Commonwealth Government has provided funding of $7.6 million over four years from 2005-06 to establish an independent expert advisory body on human genetics as a principal committee of the National Health and Medical Research Council (NHMRC).

Rapid developments in human genetics and related technologies are likely to provide substantial benefits for Australians, particularly for health.

However, there are many complex social, legal, ethical and scientific issues that arise from these technologies. The new advisory body will ensure that these matters receive careful assessment.

The HGAC will consider the impact of new technologies and provide advice on how they might best benefit Australians.

Terms of Reference

The Human Genetics Advisory Committee, through Council, will provide on-going, high-level advice on:

  • the technical and strategic aspects of current and emerging issues in human genetics and related technologies, particularly the expected impacts on human health and healthcare;
  • the ethical, legal and social implications arising from developments in human genetics and related technologies, including consideration of any impact on human rights; and
  • other matters as the Minister from time to time determines.

Functions

In carrying out its Terms of Reference the HGAC will provide:

  • relevant expertise and a consultative mechanism for the development of policy statements and national guidelines in the area of human genetics and related technologies, where appropriate in association with other government agencies or the relevant industries and organisations;
  • national leadership in the process of change relating to human genetics and related technologies, including engagement of the public on these issues;
  • national leadership in identifying genetic tests that have particular concerns or sensitivities attached to them and thus may require special treatment;
  • 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 related technologies; and
  • a focus for the coordination and integration of various national, regional and international programs and initiatives.

Composition

The Committee shall comprise of 13 members, plus the Chair, with expertise covering the following areas:

  • a person who has expertise in health and medical research, with an emphasis on human genetics;
  • a person with a background in, and knowledge of community representation, including health consumer advocacy and genetic and disability support groups;
  • a person who has expertise in law with experience in privacy, discrimination and health law matters;
  • a person who has expertise in business relevant to human genetics;
  • a person with experience in medical practice, and health services;
  • a person with experience in ethics of health and medical research;
  • a person with expertise in genetic counselling;
  • a person with experience in science communication;
  • a person with experience in data management, health informatics or information security; and
  • a person with a background in, and knowledge of aboriginal and Torres Strait Islander communities.

The membership should also:

  • include at least one and no more than two from any of the above categories so as to be balanced and cover a broad-based range of expertise, experience and perspectives;
  • be balanced as to gender and geographic distribution; and
  • include a member in common with the Australian Health Ethics Committee (in accordance with subsection 36(2) of the National Health and Medical Research Council Act 1992).

Membership

HGAC Meetings

NHMRC Human Genetics Advisory Committee meeting schedule for:

2006

2 November - 3 November 2006

10 August - 11 August 2006

8 June - 9 June 2006

Program - 8 June community and stakeholder meeting 

Information from the 8 June community and stakeholder meeting 

Agenda for 9 June meeting 

Communiqué from the 9 June meeting 

27 April - 28 April 2006

Agenda for the April meeting

Communiqué from the April meeting

16 February - 17 February 2006

Agenda for the February meeting

Communiqué from the February meeting

ALRC reports and Government response

Contact

Integration and Strategic Projects Branch
NHMRC
GPO Box 1421
Canberra ACT 2601

PH: 02 6217 9000
Fax: 02 6217 9105
Email: humangenetics@nhmrc.gov.au

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