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Legislative Assembly for the ACT: 2003 Week 8 Hansard (20 August) . . Page.. 2933 ..

MRS CROSS (continuing):

There are real and positive benefits in the use of genetic information; however, there is another side to this story. It is probable that this genetic information will be used to discriminate against some people in the community. Genetic discrimination is the use of genetic test results in an out-of-context manner that prevents an individual receiving fair and equitable treatment because of predictive genetic information. The most common contexts this discrimination is likely to occur in are the workplace and the provision of insurance services.

Genetic discrimination is similar to gender, religious or race discrimination because it is based on an unchangeable characteristic. We have fought against these types of discrimination in Australia for years; now we need to take the next step. People need to be aware of where and how genetic information can and will be used, and they must have the ability to prevent it being used to discriminate against them.

While there are many potential benefits in genetic science and technology, these must be balanced with protection of privacy and from the non-discriminatory use of genetic information. We could wait for someone else to look after us, or we could act. In some other countries-for example, the United States-there has already been a move to use this blueprint, of each and every individual, in workplace situations and by insurance companies. These companies stand to gain an enormous amount through the ability to look into the future.

It is disappointing that there is no Australian federal legislation covering genetic testing. The federal parliament has procrastinated about genetic privacy laws for the past five years. It is already in place in the majority of American states, and federal US legislators are considering national laws at the moment. It appears many of our own federal politicians continue to have a complete lack of understanding of issues regarding new technology.

Three years ago, former US president Bill Clinton banned American federal agencies from genetic discrimination against existing and potential employees. In Washington, the members of Congress are debating a bill to bar genetic discrimination nationally and are hoping that this will help remove the fear that patients who undergo genetic testing could lose their health insurance or their jobs.

Four years ago, the Australian Senate Legal and Constitutional Legislation Committee decided to address the issue of discrimination through amendments to existing legislation. Still nothing has been done. We cannot sit on our hands while our federal legislators continue to procrastinate.

Until the public has confidence that their genetic information will be treated in total confidence and without discrimination, there will continue to be serious mistrust in the use of this new technology. This would be a great shame, as it is likely to inhibit the benefits from being realised and restrict the success of future applications. Genetic technology can produce wonderful benefits for the community but, until the community has confidence that the information collected will be treated appropriately and there are sufficient deterrents against the misuse of that information, the benefits will not be realised.

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