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Democrats respond to Dr Wooldridge: "Genetic information must be protected"

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Senator Natasha Stott Despoja

Deputy Leader of the Australian Democrats Attorney General and Science and Technology Spokesperson 17 March 1998 MEDIA RELEASE 98/162



The Australian Democrats are again one step ahead of the Government having introduced legislation, the Genetic Privacy and Non-discrimination Bill 1998, which would deal with the collection, use and disclosure of genetic information, the Australian Democrats' Attorney General and Science and Technology Spokesperson, Senator Natasha Stott Despoja, said today.

"The Australian Democrats believe all genetic information should be protected by clear legislated guidelines which make that information confidential and safe," said Senator Stott Despoja.

The Genetic Privacy and Non-discrimination Bill 1998:

(i) recognises that genetic information may be of particular interest to an employer, employee and/or prospective employee where it would enable a genetically susceptible employee to avoid occupational dangers, although, this use of genetic information must not restrict any right or benefit otherwise due or available to the employee (or prospective employee);

(ii) gives clear guidance that insurance providers cannot discriminate against a person or their family based on genetic information where that person or family member is presently healthy or on the basis of a request for or receipt of a genetic service. Further, an insurance provider cannot require an applicant to undergo genetic analysis or be questioned about

genetic information and they must inform the person about their rights under this Bill;

Responding to the Minister, Senator Stott Despoja said: "Legislated protection for genetic privacy is essential so that we know our genetic information is not being misused.

"Data from the US shows discrimination in insurance and employment is already happening. There is no reason to think the same discrimination is not already happening here in Australia.

"Australia needs to have the legislation in place to deal with genetic technologies to make sure we meet the requirements of the Universal Declaration on the Human Genome and Human Rights. This requires conditions set down in law to make genetic data confidential.

"Genetic privacy is a special circumstance because your genetic information is shared with your relatives. This makes clear directions from the Parliament on how that information is collected essential for counselling families with shared genetic diseases.

"There are presently no laws which prevent an employer or an insurance company from asking for your genetic information. How they then use that information is up to them and that is not good enough.

"The Government must realise that genetic technology is here now, and again the Democrats have provided the Government with some good leads," said Senator Stott Despoja.

For comment contact Senator Stott Despoja on (08) 8232 7595 or 0418 812 589