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Australia to get human genetics commission

16 May 2005
By BioNews
Appeared in BioNews 308

The Australian Government is providing $7.6 million over four years to set up an independent advisory body on human genetics. The move, revealed as part of last week's Budget announcements, follows a key recommendation made by the Australian Law Reform Commission (ALRC) in their 2003 report: 'Essentially Yours: The Protection of Human Genetic Information'. The new commission will address the social, legal, ethical and scientific issues arising from human genetic technologies.

The ALRC report was the result of a two-year inquiry by the ALRC and the Australian Health Ethics Committee (AHEC). It listed 144 recommendations detailing how Australia should deal with the implications of genetic research and knowledge. One of these was the establishment of a standing advisory body on human genetics, to be called the Human Genetics Commission of Australia, the funds for which have now been made available. The commission will be a principal committee of the National Health and Medical Research Council (NHMRC).

Other key recommendations in the report included prohibiting genetic discrimination via existing discrimination laws, creating a new offence of genetic testing without consent, banning employers from using genetic information and requiring the insurance industry to improve consumer protection policies and practices relating to genetic information. At the time, Professor David Weisbrot, president of the ALRC and chair of the inquiry, commented that because genetic science was such a fast-developing area, it left major gaps in the legal protection of human genetic information. 'Now is the time to lay down the basic rules in this area', he said, continuing 'this will require some additions and amendments to existing law'.

The new commission will be the second of its type in the world, following the establishment of the UK's Human Genetics Commission in May 1999. The HGC replaced the Advisory Committee on Genetic Testing, the Advisory Group on Scientific Advances in Genetics and the Human Genetics Advisory Committee. A recent report by the UK House of Commons Science and Technology Committee recommended expanding the remit of the HGC, to include issues related to fertility treatments and embryo research.

ALRC 96 Essentially Yours: The Protection of Human Genetic Information in Australia
ALRC |  29 May 2003
Leading Australia's health into the future
Australian Government Department of Health and Ageing |  10 May 2005
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