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Legislative Assembly for the ACT: 2004 Week 08 Hansard (Wednesday, 4 August 2004) . . Page.. 3403 ..

Let us continue this process of eradicating harmful discrimination by treating in the same way the discriminatory use of genetic information in employment. We cannot allow such serious decisions to be made on a suspect basis that has potential to tragically affect lives that might otherwise be lived happily and fully. We cannot let people play God in matters with such potentially serious consequences for an individual, particularly when the individual has no present manifestations of an illness that might never manifest itself. We do not tolerate racial or sexual discrimination, so we should not tolerate genetic discrimination. The legislation I am proposing stops such discrimination.

Similarly, we cannot allow genetic information to be used in the field of insurance to stop certain individuals from having access to insurance. This bill will not prevent insurance companies from employing existing actuarial practices that are used to measure the risk and cost of insurance policies. Rather, this bill will prevent insurance companies going further than that and demanding genetic tests from those seeking insurance. Furthermore, it will prevent insurance companies from discriminating against an individual on the basis of personal genetic information.

A recent article in the British Medical Journal showed that 33.4 per cent of a study group made up of individuals from numerous genetic support groups had difficulty obtaining life insurance compared to 5 per cent of other applicants. So the evidence is there to show that insurance discrimination based on genetic information does exist. The perception that genetic information will be used to alter or prevent insurance coverage is of itself also significant. This perception can deter people from undergoing genetic testing which in turn takes away any possible benefits that could be derived from genetic testing. The Australian Law Reform Commission and the Australian Health Ethics Committee have both indicated that there is a perceived fear of genetic discrimination in life insurance that has caused individuals to avoid genetic testing.

If we allow individuals or classes of people to be discriminated against in the areas of employment and insurance on the basis of genetic information, we will likely be contributing to the creation of a new social problem through the establishment of a new social underclass, an underclass that is unemployable and uninsurable. We have to prevent that from happening. This legislation is also in line with UNESCO’s Universal Declaration on the Human Genome and Human Rights, specifically, article 6 of that declaration, which states:

No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.

That appears to state things very clearly. The main result of this bill not being passed in the detail stage would be a negative effect on the health of our community. As I said at the outset, genetic testing can be highly beneficial to people’s health. Genetic testing can give clues to dealing with life-threatening conditions and can indicate a person’s predisposition to a disease which would allow for early treatment or could enable the person to adjust their lifestyle to minimise the chance of the predisposition becoming manifest. This has been referred to today by both Ms Tucker and Ms Dundas.

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