Introduction

Why should anybody invest all that money to train me, when there are a thousand other applicants with a far cleaner profile? Of course. It’s illegal to discriminate—‘genoism’ it’s called—but no one takes the laws seriously.^[1]

30.1 The Inquiry’s Terms of Reference require an examination of whether, and to what extent, a regulatory framework is needed to provide protection from inappropriate discriminatory use of human genetic information in a number of contexts, including employment. Chapter 29 outlined the various forms of genetic testing and information that are, or may become, available to employers and the ways that these may be used in employment.

30.2 Information received by the Inquiry indicated that the use of genetic testing in the Australian workplace is very limited, although the use of family medical history appears to be more common. However, given the significant use of pre-employment health screening by Australian employers and the requirements for health surveillance in certain industries, there is potential for the use of genetic information to become more widespread. The Inquiry was informed of a number of cases, both in Australia and overseas, in which genetic information has been used inappropriately in the workplace. This chapter examines the framework of anti-discrimination law to ensure that appropriate safeguards are in place to regulate the collection and use of genetic information in employment.

30.3 As discussed in Chapter 9, Australia has anti-discrimination legislation at the federal, state and territory level. This chapter, and those following, focus on federal legislation but reference is made to state and territory legislation when discussing the need for greater harmonisation and when considering whether such legislation provides alternative models for consideration. Chapter 9 made a number of general recommendations relating to discrimination on the ground of genetic status, which applied to all contexts, including employment. This chapter proceeds on the basis that the recommendations in Chapter 9 are accepted, and considers whether additional reform is necessary in the context of employment.