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Legislative Assembly for the ACT: 2004 Week 08 Hansard (Wednesday, 4 August 2004) . . Page.. 3404 ..

Simply put, genetic testing and the information this testing provides can be used for preventing, treating and healing diseases. But if we do not assure genetic privacy, people will avoid undertaking genetic testing and likely health benefits will not be realised. The negative effects this would have on the community are obvious. Similarly, those who undertake genetic testing can significantly reduce the costly burden of continuous medical surveillance if the test turns out to show no signs of a predisposition to a particular disease. These people would also have a weight of anxiety lifted from their shoulders.

We cannot bury our heads in the sand on this issue. It should be acknowledged that the misuse of genetic information is not widespread in Australia at present. This is because genetic testing is not widely used; nor is it considered highly reliable. But genetic testing will become more widely used and more reliable. With this will come increased levels of discrimination based on genetic information. We have a chance now to prevent this happening. We can right now take steps to assure the residents of the ACT that their genetic privacy will be protected. We need to be ahead of the game on this issue, and supporting this legislation shows that we are. Let us stop genetic discrimination before it becomes a regular practice.

I encourage all members to support the Discrimination (Genetic Status) Amendment Bill 2003 because it prevents unfair and unwarranted discrimination. We need to allow for genetic testing while ensuring it is not misused. This legislation does this. I refer to something Mr Stefaniak mentioned. In my tabling speech I mentioned that the role of the police in using DNA to solve crimes would not be hindered. That is extremely important. The purpose of this is to prevent another form of discrimination. The Chief Minister said earlier that this was unnecessary and he referred to a number of clauses that were a problem. He also referred to the Commonwealth Disability Discrimination Act and the Commonwealth Insurance Act. This is something I will look into.

If the Chief Minister is genuinely interested in the preservation of human rights—and I suppose that is manifest through his bill of rights—I ask him to look at it seriously rather than just discount it as unnecessary and saying that it is covered in the act. I would have found it more encouraging as a member of this place if the Chief Minister had come to me or sent somebody to say they feel it is unnecessary but let us sit down and talk about it because it is a form of discrimination.

I encourage all members to support this bill. I do believe we need to allow for genetic testing but to ensure that it is not misused. I will conclude with a quote from congresswoman Louise Slaughter, a representative who has sponsored a number of similar bills in the US Congress. She put it best when she said:

Genetic discrimination is an insidious threat to privacy, public health and medical research and it is a danger to every person.

This is before the US Congress, but for members’ benefit—and primarily for the Chief Minister’s so he does not believe that only one side of politics in the United States is looking at this—both Presidents Clinton and Bush supported this form of action. On 8 February 2000, President Bill Clinton endorsed this type of bill when he signed an executive order banning genetic discrimination in federal employment. On 23 June 2001,

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