The NHMRC Human Genetics Advisory Committee of Australia
In May 2003 the Australian Law Reform Commission and Australian Health Ethics Committee’s report Essentially Yours – The Protection of Human Genetic Information was provided to the Federal Government. The report was the product of a two-year inquiry, involving extensive research and widespread public consultation. In December 2005 the Government released its response to the Report’s 144 detailed recommendations, which addressed the regulation of the collection and use of genetic information in areas such as employment; insurance; the delivery of clinical services; ethical oversight of medical and scientific research; sports; human genetic databases; immigration and law enforcement. Central to the response was the Government’s announcement of the formation of the Australian Human Genetics Advisory Committee (HGAC) as a principal committee of the National Health and Medical Research Council. The HGAC comprises 12 members and is chaired by Professor Ron Trent, Professor of Molecular Genetics at the University of Sydney. The membership is representative of the fields of health and medical research, with an emphasis on human genetics, business, health law especially privacy and discrimination, genetic counselling and education, data management and health informatics and includes representatives from the community and Aboriginal and Torres Strait Islander communities. Its charter includes the provision, through the Council, of on-going, high-level advice on matters that include 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. Additionally, the ethical, legal and social implications arising from developments in human genetics and related technologies, including consideration of any impact on human rights will be considered. The proposed work plans of the HGAC and its sub-committees and progress in the first 6 months of operation will be presented.