Media release
Australian Law Reform Commission / Australian Health Ethics Committee
Wednesday, 30 January 2002
More time for national genetic inquiry
As part of a commitment to ensure widespread public consultation, the deadline for a national inquiry into the protection of human genetic information has been extended by nine months until March 2003.
The Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council are investigating, in relation to the use of human genetic samples and information, how best to:
-
protect privacy;
-
ensure protection from unfair discrimination; and
-
ensure high ethical standards of conduct.
ALRC President Professor David Weisbrot said the inquiry had attracted an enormous amount of public interest, from experts and interest groups as expected, but also from members of the general community.
"The joint inquiry released a comprehensive Issues Paper - providing background information and outlining the major issues- in November last year. Since then, we have conducted an intense round of both private consultations and public meetings and received over 100 written submissions," he said.
"We wanted to ensure the maximum opportunity for community consultation in this inquiry, and requested an extension of the deadline for this purpose, so we are pleased this has been granted by the federal Attorney-General and the Minister for Health and Ageing."
Professor Weisbrot said public meetings were held late last year in Melbourne, Perth, Hobart, Brisbane, Adelaide and Byron Bay. Further meetings will be scheduled for Far North Queensland, the Northern Territory, the ACT and NSW early this year.
AHEC Chair Dr Kerry Breen said the extension means that the closing date for submissions on the Issues Paper can now be pushed back to 18 March this year (from the original deadline of 14 January).
"All of the submissions and comments will be used to compile a Discussion Paper, which we expect to release in August. The Discussion Paper will contain our draft findings and proposals, and will be the basis of further national consultation before the completion of our final report, due on 31 March next year," he said.
Dr Breen said the inquiry would review ethical and professional standards and practices, as well as the adequacy of existing privacy protection and anti-discrimination laws, in order to ensure Australia is a world leader in the protection of human genetic information.
Professor Weisbrot said concerns about the privacy of genetic data had so far dominated submissions to the national inquiry: "People are concerned about how their genetic information and samples are stored, and whether there is sufficient protection for what is very powerful personal information.
"Other major issues raised in submissions included the use of genetic information by insurance companies, the way in which medical researchers obtain and use (and sometime re-use) genetic samples and information, and the use of DNA profiling by law enforcement authorities," Professor Weisbrot said.
He said the challenge for the inquiry is to develop recommendations that encompass a range of policies, standards and practices that promote the intelligent use of genetic information, while providing a level of security with which the community feels comfortable.