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Legislative Assembly for the ACT: 2004 Week 08 Hansard (Wednesday, 4 August 2004) . . Page.. 3401 ..

Stulic refers to a British study of genetic discrimination in the British life insurance industry published in the British Medical Journal. He states that 33.4 per cent of the study group, which was drawn from members of a range of genetic support groups, faced difficulties when applying for life insurance compared with 5 per cent of applicants in a control group. He goes on further, noting the Senate committee’s conclusions, that it was less of a problem in Australia because of the universal health coverage through Medicare. However, as we well know, since 2000 and since the Senate committee reported, the universality of Medicare has been under severe attack.

The exemption for the insurance industry in the Discrimination Act relies on the use of actuarial data indicating some link between information and health risks. In the case of genetic information, Mr Stulic notes that the British Medical Journal has examined this topic and quotes the journal as follows:

As the scope for screening, particularly for polygenic disease escalates, insurance companies cannot possibly have the data to enable them to finetune individual premiums. It is going to take decades to unravel the complex interaction between genetic, environmental, and individual factors in multifactorial disease, and the extent to which we can use this knowledge to improve health outcomes.

In other words, actuarial data on genetic information is really unreliable as a predictor. So this amendment seems important. However, I have been alerted to the possibility of this section contravening the Commonwealth’s Insurance Act. This is something we will need to look into before finally voting.

The final part of the bill amends the Crimes Act and the Health Records (Privacy and Access) Act to require permission of the person whose genetic material is being tested before any testing occurs. The application of this section to the person doing the tests in the lab is perhaps of concern. However, the wording of the offence is that the person is reckless about whether a relevant person has consented to the taking of the sample for the purpose of genetic testing. This seems probably to be a reasonable basis, with the scope for reasonable defences.

As I discussed in relation to the scrutiny report, testing without consent would be allowed in accordance with the law of the territory or in accordance with a court order. I look forward to resolving these issues in the detail stage, and thank Mrs Cross for bringing the matter forward.

MRS CROSS (11.36), in reply: I thank members of the crossbench and the opposition for their support and have made notes of the Chief Minister’s concerns. I assure the Chief Minister that I will look into them in depth. I accept that we will debate this in the in-principle stage and adjourn debate in detail to another day.

Genetic technology can produce many benefits for the community. Among other things, genetic information can be used to give an indication of a predisposition to certain illnesses. It can also be used to establish parentage in disputed custody situations. Benefits such as these that can be derived from genetic information are undeniable. However, the misuse of this information can have adverse consequences, and if there is no regulation of the use of genetic information, there will exist the potential for likely large-scale discrimination against people who have a predisposition to certain diseases or

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