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Legislative Assembly for the ACT: 2003 Week 8 Hansard (20 August) . . Page.. 2935 ..

MS DUNDAS (continuing):

and hope that legislation comes swiftly, so that at least ACT residents are protected from genetic discrimination.

Genetic research creates unrest and unease in the community, who feel concerned-and quite rightly so-that current research can be used against them in the future. The science community, therefore, feels torn between the excitement of scientific breakthroughs and the disquiet these may be met with because Australian governments have not provided the legislative framework to protect the community from the misuse of such genetic information.

Parliaments cannot hide behind the excuse that science is moving too quickly for legislation. That would be nothing short of negligent. There are fundamental rights that people should have that they currently do not have. We know what we have to do to protect this fundamental right. We have 144 recommendations from the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health & Medical Research Council, who have recently completed a two-year inquiry into the very topic of genetic information and genetic discrimination.

Basically, we have no more excuses. Even some elements of the private sector are ahead of governments in this field. Insurance companies have agreed not to increase the premiums of people with genes for the disorder of certain diseases, provided they follow a lifelong treatment regime. All governments need to act to ensure that people are protected from discrimination arising from the misuse of genetic information. The residents of the ACT cannot be left behind in this debate.

MR STANHOPE (Chief Minister, Attorney-General, Minister for Environment and Minister for Community Affairs) (3.32): There are two aspects of this discussion upon which I would like to comment. The first concerns the specific issue of discrimination in relation to the use of genetic information. The second is the issue of the need to regulate the use of genetic information more generally.

As members will be aware, advances in medical science, particularly in the area of genetic information, mean that it is possible to determine that some people have a greater likelihood of developing an impairment than others. Such predictions are undoubtedly going to become more common and more accurate as time goes by and the science is refined.

The Discrimination Amendment Act 2003, which was passed by the Assembly in March, contained, among other things, an amendment to expand the definition of "impairment"in the act to make it clear that discrimination on the basis of possible future impairment is not lawful. The government put forward this amendment to ensure that the Discrimination Act 1991 was effective in providing protection from unfavourable treatment based on genetic or other medical information indicating a predisposition to develop some form of impairment.

In the Discrimination Act "impairment"includes malfunction of the body, loss of bodily functions, intellectual disability, mental illness and the presence in the body of organisms capable of causing disease. With the amendment in the Discrimination Amendment Act 2003, the meaning of "impairment"was expanded to include an impairment that a person has or is thought to have; an impairment that a person had,

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