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Legislative Assembly for the ACT: 2004 Week 08 Hansard (Wednesday, 4 August 2004) . . Page.. 3397 ..

genetic material, the sequence code that makes up genes and chromosomes in every cell of our body. This achievement is significant and has the potential to provide considerable benefits for improved medicine and treatment of diseases. However, these advances also bring the need to develop new laws to deal with the new possibilities, to make sure we achieve the full benefit of new technologies.

The recognition of genetic privacy in ACT law is timely. On 11 November 1997 the general conference of the United Nations Educational, Scientific and Cultural Organization, or UNESCO, unanimously adopted the Universal Declaration on the Human Genome and Human Rights. The general conference matched the universal declaration with a resolution on its implementation. In part it urges member states:

… in the light of the provisions of the Universal Declaration on the Human Genome and Human Rights, to take appropriate steps, including where necessary the introduction of legislation or regulations, to promote the principles set forth in the Declaration, and to promote their implementation.

Article 7 of the universal declaration provides:

Genetic data associated with an identifiable person and stored or processed for the purposes of research or any other purpose must be held confidential in the conditions … set by law.

Parliaments need to lead this debate and provide the guiding principles. The exponentially increasing number of genetic conditions that may be tested and the huge range of genetic information that will be available from the human genome project will make genetic information a reality for many in our community. It is estimated there may be 3,000 or 4,000 genetic hereditary diseases and conditions, and their identification at the gene level is possible. Each person probably carries a number of non-functioning genes, often lethal, and most probably a larger number of genes that place the individual at risk of developing some condition.

Genetic discrimination describes the different treatment of individuals and their family based on genetic differences, presumed or actual, and may be distinguished from discrimination based on having the symptoms of genetic disease. On 11 November 1997, the general conference of UNESCO adopted unanimously and by acclamation the Universal Declaration on the Human Genome and Human Rights. Article 6 provides:

No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.

This bill outlaws genetic discrimination by amending the ACT Discrimination Act of 1991. The ACT has been repeatedly at the forefront of advances in discrimination law. For example, the ACT added discrimination on the basis of age to its discrimination laws in 1994, a full decade before the Commonwealth, who has only recently passed the Age Discrimination Act.

Medical science is increasingly designing new and more accurate tests to determine the genetic susceptibility of people to a range of genetically influenced disorders. The commercialisation of these tests will lead to more widespread testing and increase the

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