Advisory committees

1.6  It is standard operating procedure for the ALRC to establish a broad-based, expert Advisory Committee to assist with the development of its inquiries. In this particular case, the Advisory Committee established by the ALRC and AHEC included leaders in the areas of genetic and molecular biological research; medicine; clinical genetics and genetic counselling; community health; indigenous health; health administration and community education; insurance and actuarial practice; and privacy and anti-discrimination laws. A separate Working Group on Law Enforcement and Evidence also was established, with some overlapping membership, including experts on genetic testing, forensic medicine, DNA profiling, policing and trial practice (civil and criminal, defence and prosecution). As always, attention has been paid to achieving a measure of gender, geographical and interest group balance. Full membership details are provided in the List of Participants, above.

1.7  The Advisory Committee and the Working Group met several times during the course of the Inquiry to provide general advice and assistance to the ALRC and AHEC. Such bodies have particular value in helping the Inquiry maintain a clear focus and arrange its priorities, as well as in providing quality assurance in the research and consultation effort, and commenting upon draft materials and reform proposals. However, ultimate responsibility for this Report and its recommendations remains with the relevant Commissioners of the ALRC and Members of AHEC.

1.8  During the course of the Inquiry, the ALRC and AHEC established communications with other bodies that have undertaken parallel projects or research, such as the Ethics Committee of the Human Genome Organisation (HUGO), the Bio-Ethics Committee of UNESCO, the United Kingdom’s Human Genetics Commission, the Organisation for Economic Cooperation and Development’s Working Party on Information Security and Privacy, the United States Equal Employment Opportunity Commission, and the Ontario (Canada) Ministry of Health and Long-Term Care.