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Legislative Assembly for the ACT: 2003 Week 8 Hansard (20 August) . . Page.. 2937 ..

MR STANHOPE (continuing):

clarify interjurisdictional arrangements for the handling of forensic material from a missing or deceased person.

These issues are immediate and relevant to all of us. For example, ACT public and private hospitals, like all Australian hospitals, offer screening for all newborn babies for a number of metabolic disorders. Newborn screenings, samples of blood dried on filter paper, are collected from all babies for testing in New South Wales and the ACT. These samples, which are commonly referred to as "Guthrie cards", are stored until the child is 18 years of age. The stored collection of Guthrie cards is thus a comprehensive and very valuable human tissue collection.

Access to this type of collection for other purposes, medically related or otherwise, is a matter for the careful consideration of many affected interests. The issue is addressed by the Australian Law Reform Commission report. Implementation of the recommendations will involve governments in both internal and interjurisdictional consultation and cooperation to ensure that we do get a national response, coordinated by governments across Australia, to these very important issues.

These are significant issues, and they require a consistent and coordinated approach. This government is certainly committed to working cooperatively to ensure that these issues are addressed in an appropriate and timely manner, and our officials are determined to ensure that that occurs.

MR CORBELL (Minister for Health and Minister for Planning) (3.38): Mr Speaker, I welcome the discussion of this matter of public importance. It is worth highlighting that the Australian Law Reform Commission and the Australian Health Ethics Committee did a report on the protection of human genetic information, which contains 144 recommendations for reform.

The government has welcomed the report and has supported its reform agenda. The central themes of the inquiry were ethical standards, privacy protection and protection from unlawful discrimination. The report presents the ACT with the challenges of providing skilled genetic counselling services and achieving reform of occupational health and safety legislation, harmonisation of information and health privacy legislation as it relates to human genetic information. Finally, there is the challenge of balancing all of these to ensure the benefits of genetic science for improved diagnostics and therapies.

To be truly effective in the protection of genetic information and to make the most of our resources, collaboration and consistency between governments, health professionals and the community are essential. The report provides some direction on how to achieve this. I am pleased to advise the Assembly today that the ACT is well placed to respond to these recommendations.

Central to this report is the protection of the community and meeting the needs of the consumer. As an example of our capacity to respond to consumers, only last week I launched the consumer feedback project standards. This project saw consumers and health professionals coming together to work out their needs. The standards have laid a solid foundation for effective collaboration and the support of quality initiatives in the ACT.

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