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Legislative Assembly for the ACT: 2003 Week 14 Hansard (10 December) . . Page.. 5061 ..

MRS CROSS (continuing):

This vague type of terminology is very dangerous when it comes to the actual interpretation of the results of the tests. People I have spoken to who work in the genetic science area are very cautious about the interpretations made as a result of genetic testing. The need for absolute accuracy is vital and often there is a wide range of opinions for a particular case. We need to be aware that, at the moment, the interpretation of genetic tests can be unreliable.

Australia uses DNA testing in the forensic area very efficiently for crime solving. This testing is expensive and time consuming. However, if we need to solve a particular crime and DNA testing is the method to give the best results, then it is appropriate to use it. DNA testing has been used to great advantage in some cases for prisoners held on death row in America. In this case, it has saved innocent lives. It is a very useful tool. We just need to make sure that it is not abused.

The forensic use presents one example of when we need this legislation on our statute book. People who have provided DNA as part of a criminal case need to be assured that the information is safe and will not be used in any situation but that case. One of the things that worry members of the community is that genetic information can reveal personal information about family members and relatives. This information must be protected from being used indiscriminately or without the permission or knowledge of the individual. We do not want to have people concerned that their information will be misused.

It can be vital for some individuals to provide DNA samples for testing to determine whether they are susceptible to developing a particular inheritable disease. The bottom line in this case is that genetic privacy needs to be assured. As the testing methods are constantly improving and the interpretation of the information is getting better all the time, this legislation is necessary now to protect individuals' privacy now. In a very short time, various organisations will be able to use it to screen people, if they want. As a society, I do not believe that we should be subjected to that sort of invasion of our privacy.

There is currently a broad framework of genetic protection from discrimination in Australia based primarily around the Disability Discrimination Act 1992 and the Privacy Act 1998, but nothing that protects specifically against genetic discrimination. 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, but still nothing has been done. It is disappointing that there is no federal legislation covering genetic testing in Australia, but just because the federal parliament has procrastinated about genetic privacy laws does not mean that we should do the same.

There are many different situations where genetic discrimination may occur. I will outline just a few for members: discrimination in the form of a loss of a job or failure at an interview because of the employer having genetic information that says that the

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