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Legislative Assembly for the ACT: 2003 Week 8 Hansard (20 August) . . Page.. 2938 ..

MR CORBELL (continuing):

The report also calls for a strengthening of ethical standards. The issue of maintaining correct ethical standards will be discussed next week at a workshop held under the auspices of the ACT quality and safety forum. The workshop will review the interface between quality assurance and health care, and independent ethical review. The report's recommendations also highlight the importance of medical education and training in human genetics. The ANU medical school will clearly play a major role in directing medical vocational training in the ACT.

The ACT health research council is being established by the government to provide advice on the development of the health research effort in the ACT and the surrounding region. The council will provide advice on research and development policy and on medium and long-term global trends in health and medical research. Membership includes representatives of institutional and government interests in health and medical research and development at senior levels. Again, the establishment of this body fits well with the intent of the report into the use of genetic information.

As I have outlined, the ACT government is well placed, through its existing institutions and forums, to respond to the important issues that privacy or genetic information raises. I would like to assure the Assembly that ACT Health is committed to working in partnership with other departments and governments, and the community, to ensure the highest quality health services for our community and the protection of human genetic information.

MR SMYTH (Leader of the Opposition) (3.41): This matter of public importance raises many issues, which I suspect will take many years to sort out. For instance, the Kendall cards the Chief Minister raised are a valuable source of genetic information that in time may lead to cross-matching and people surviving what are currently illnesses because they cannot get a suitable donor for transfusion or transplant. At the same time, it is about protecting people.

I am reminded of the film Gataca, which stars Ethan Hawke and Uma Thurman, where only the genetically pure get to reach for the stars and take the metaphorical flight to the moon, and those that are judged impure are allocated the more lowly positions.

MR SPEAKER: They were probably sent to a parliament somewhere.

MR SMYTH: It could well be, Mr Speaker. I do not believe anybody in this place would like to see a situation like that. I agree with the point made by the Chief Minister and the Minister for Health that the work done by the Law Reform Commission and the report that came down earlier this year will need a concerted approach across government and across jurisdictions to make sure that we get the balance that is required. I suspect, like many arguments that we have, it will be about where the point of balance is situated.

So the opposition thanks Mrs Cross for raising this issue. We need to get it right because it would be a terrible thing to lose the good tools and information and the advances that will come out of the use of genetic information. At the same time, I do

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