Introduction

Officially they are called ‘In-valids’. … They are the ‘healthy ill’. They don’t actually have anything yet — they may never have. But since few of the pre-conditions can be cured or reversed, it is easier to treat them as if they were already sick.^[1]

9.1 This quote, from the film GATTACA, describes an imaginary future world, but discrimination on the ground of genetic status is no longer science fiction. Recognising this, the Inquiry’s terms of reference asked whether a regulatory framework is required to provide protection from inappropriate discriminatory use of human genetic samples and information.

9.2 Many submissions received by the Inquiry included statements about the undesirable effects of inappropriate and discriminatory use of genetic information. The Anti-Discrimination Board of NSW stated:

Rather than acting as an impediment to the development and application of genetic technology, effective anti-discrimination and privacy legislation are critical to realising the public health benefits of genetic information. Conversely, if we fail to provide such protection, discrimination and privacy concerns will act as disincentives to testing and research participation and have negative consequences for individual and public health outcomes.^[2]

9.3 The Human Genetics Society of Australasia provided a topical example:

One concern is that people will avoid having potentially important tests that may help in their clinical management for fear of discrimination. For example, a test for factor 5 Leiden would enable a person to know if they were at increased risk of developing a deep vein thrombosis when on a long flight. However, fear of not being allowed to fly or not obtaining insurance may prevent them taking the test.^[3]

9.4 In some circumstances, discrimination on the ground of a person’s genetic status may already be unlawful under existing race, sex, or disability anti-discrimination laws. This chapter explores possible deficiencies in this protection, particularly in relation to disability discrimination. The Inquiry has concluded that genetic discrimination should be addressed within the existing legal framework, subject to a range of recommendations intended to ensure comprehensive protection.

9.5 Australia has anti-discrimination legislation at the federal level as well as legislation in all States and Territories.^[4] This chapter focuses on the federal legislation but reference is made to the state and territory legislation in the context of discussing the need for greater harmonisation across Australian jurisdictions and for the purpose of examining alternative models.

9.6 The primary pieces of federal anti-discrimination legislation are the:

• Sex Discrimination Act 1984 (Cth) (SDA);

• Racial Discrimination Act 1975 (Cth) (RDA);

• Disability Discrimination Act 1992 (Cth) (DDA); and

• Human Rights and Equal Opportunity Commission Act 1986 (Cth) (HREOC Act).

9.7 In addition, the Workplace Relations Act 1996 (Cth) (WRA) contains provisions that prohibit discrimination on a range of grounds in terminating employment. The WRA is discussed in more detail in Chapter 30. The Inquiry also notes that, on 9 January 2003, the Attorney-General, the Hon Daryl Williams AM QC MP, released an information paper on proposed age discrimination legislation and called for submissions on the proposal. A Core Consultative Group has been established to help progress the development of the legislation.^[5]