Australia ‘well placed’ to lead world in protecting human genetic information

Friday, 9 December 2005: Australia will be well placed to meet the challenges posed by rapid advances in genetic science and technology, with the Australian Government accepting most of the recommendations of a landmark report on genetic privacy and discrimination.

Australian Law Reform Commission (ALRC) President Professor David Weisbrot said he was “delighted with the Government’s positive and comprehensive response to the ALRC/Australian Health Ethics Committee report, Essentially Yours: The Protection of Human Genetic Information in Australia”.

“The Essentially Yours report was the product of a two-year joint inquiry by the ALRC and the AHEC, and is still the most comprehensive inquiry ever undertaken into these issues—here or overseas,” Prof Weisbrot said.

“Since its release in 2003, Essentially Yours has been hailed as the ‘bible’ of human genetic protection by experts around the world. For example, Dr Francis Collins, who led the Human Genome Project—the greatest cooperative scientific achievement in history—described the report as ‘truly phenomenal…putting Australia ahead of the rest of the word’,” Prof Weisbrot said today.

The two-volume, 1200 page report made 144 recommendations about how Australia should deal with the ethical, legal and social implications of new genetic technologies.

Prof Weisbrot said the Australian Government’s response, released today, strongly endorses the ALRC’s basic philosophical approach to these new and difficult issues.

“The Government has also accepted the great bulk of our 144 detailed recommendations, including key ones such as the establishment of a Human Genetics Commission of Australia (HGCA), and measures to regulate the collection and use of genetic information in such critical areas as employment; insurance; the delivery of clinical services; ethical oversight of medical and scientific research; sports; human genetic databases; immigration and law enforcement.

“Of course, this is not the end of these matters, and there is still work to be done—especially by the new HGCA and the National Health and Medical Research Council—but I am now very confident that we will have the right policy platform to ensure that Australia is a world leader in the protection of human genetic information as well as in genetic research and medicine,” Prof Weisbrot said.