Existing legal framework or new legislation?

9.49 A preliminary question is whether it would be better to amend existing anti-discrimination laws to clarify their application, or enact new legislation dealing specifically with genetic discrimination. The question has been prompted, in part, by the Genetic Privacy and Non-discrimination Bill introduced into the federal Parliament by Senator Natasha Stott Despoja in 1998.^[22] The Bill was largely based on a Bill then before the United States Congress. For reasons explained further below, the Inquiry has concluded that discrimination on the ground of genetic status should continue to be dealt with under the framework of existing federal, state and territory anti-discrimination laws, subject to the legislative amendments and other safeguards recommended in this Report.

Submissions and consultations

9.50 Several submissions to the Inquiry, including Senator Stott Despoja’s submission, expressed support for separate legislation.^[23] Although ultimately rejecting this approach, the Centre for Law and Genetics set out some of the potential advantages of separate legislation in its submission:

There would undoubtedly be some advantages in enacting legislation dealing specifically with genetic discrimination, including the advantage of greater certainty of protection, heightened visibility, and the consequential effect of public consciousness raising.^[24]

9.51 The ‘stand alone’ legislation approach has been adopted in a number of States in the United States and in some European countries. The Human Genetics Commission (HGC) in the United Kingdom also recommended separate legislation in its final report. In relation to the Disability Discrimination Act 1991 (UK), the HGC was of the view that it would be too difficult to amend the definition of disability in the Act, which adopts a very different approach to the DDA, to address genetic disorders, especially presymptomatic disorders.^[25]

9.52 However, the majority of submissions received in response to DP 66, including those from the acting Disability Discrimination Commissioner,^[26] the Anti-Discrimination Board of NSW,^[27] the Institute of Actuaries of Australia,^[28] the Centre for Genetics Education^[29] and the Human Genetics Society of Australasia^[30] expressed support for dealing with the issue within the existing legislative framework. The Genetic Discrimination Project Team, for example, commented:

We support the proposal to work within the existing legal framework (Proposal 8-1). This would appear to us to be the most logical, least interventionist approach. This is far preferable to developing a whole new legislative framework: this is both unnecessary and undesirable and would attract justifiable criticism of genetic exceptionalism.^[31]

9.53 In its 1999 report, the Senate Legal and Constitutional Committee concluded in relation to the Genetic Privacy and Non-discrimination Bill 1998:

5.28 The committee considers that it would be more appropriate to amend, where necessary, existing privacy and discrimination legislation to ensure that issues raised by genetic technology are adequately covered under that legislation, for example, the various federal anti-discrimination acts, the Human Rights and Equal Opportunities Act 1986, and the Privacy Act 1988.

5.29 The committee believes that such an approach provides a clearer legislative base. It avoids the administrative and legal confusion created by having different sets of rules applying to genetic information than to other personal information …

5.30 Creating specific legislation such as the bill would also cut across a number of regulatory systems already in place, or in the process of being established, that are themselves the product of extensive consultation and negotiation between stakeholders and state, territory and federal governments.^[32]

9.54 The Anti-Discrimination Board of NSW shared the Senate Committee’s concerns about administrative and legal confusion and went on to state in its submission:

There are numerous benefits to retaining genetic discrimination within [the] conceptual framework of existing anti-discrimination legislation. Many of the issues discussed above in relation to uniformity of legislation also apply to this issue including:

•  

  • greater clarity about people’s rights and responsibilities under anti-discrimination law where there are fewer pieces of legislation

  • a reduction in the complexity of jurisdictional decisions for would-be complainants

  • increasing the likelihood that case law from one jurisdiction is applicable in another and for precedent to be applied …

Retaining genetic discrimination within [the] conceptual framework of existing anti-discrimination legislation will ensure that we do not afford different levels of protection to people with disabilities diagnosed by genetic testing, or future or imputed disabilities based on predictive genetic testing compared with other people with disabilities.^[33]

Inquiry’s views

9.55 The Inquiry considers these submissions to be persuasive. The Inquiry recommends that discrimination on the grounds of genetic status be dealt with under existing anti-discrimination legislation subject to the legislative amendments and other safeguards recommended in this Report. Working within the existing legal framework will promote certainty and consistency and will build on existing understanding and practice in this field. The Inquiry does not support the development of separate genetic discrimination legislation.