Guidance for employers on the use of genetic information

31.65 The recommendations above are intended to ensure that requests for genetic information by employers are confined to situations in which the information is reasonably required for a purpose that does not involve unlawful discrimination, for example, assessing an applicant’s ability to perform the inherent requirements of a job or meeting occupational health and safety concerns. Even in these circumstances, however, submissions raised concerns about procedures for testing in the workplace and employers’ ability to interpret and use genetic information in a reasonable manner.

31.66 The Disability Discrimination Legal Service submitted:

In circumstances where [genetic] testing is permitted, a regime needs to be developed to facilitate the rigorous assessment of the reliability, accuracy and proper interpretation of genetic testing results. The uncertainty of such information is such that any definitive decision-making based on such information is currently doubtful and education and awareness addressing these issues needs to occur in the context of a broader community awareness campaign.^[46]

31.67 In DP 66 the Inquiry proposed the development of Disability Standards under the DDA dealing with the collection and use of genetic information in employment. Under s 31 of the DDA, the Attorney-General may formulate Disability Standards that, once tabled before Parliament for a certain period, gain the force of law (see Chapter 30). Currently there are no standards in force in relation to employment. As an interim measure, the Inquiry proposed that HREOC should issue guidelines in this area.

31.68 The acting Disability Discrimination Commissioner and a number of other submissions expressed support for the proposal.^[47] However, the Anti-Discrimination Board of NSW and the Anti-Discrimination Commission of Queensland expressed concern at the development of binding standards in this area. The Anti-Discrimination Board of NSW submitted that the collection and use of genetic information by employers will be very context specific.

Whether it is lawful to collect and use genetic information will be entirely dependent upon the nature of the work undertaken, the relationship of the work environment to particular conditions …

As the purpose of Standards is to provide greater guidance about what constitutes discrimination in certain circumstances, then Standards would need to be very specific, including identifying specific types of work environments and conditions, or prepositions to particular conditions, which cannot be eliminated by any other means. Anything short of this degree of specificity would be unacceptable, given that compliance with a Standard may prevent a person who might otherwise have had a claim under the DDA from lodging a complaint. In our view it will be extremely difficult to develop Standards with sufficient precision to warrant usurping people’s right to lodge a complaint under the DDA, given that the rapid pace at which the science of genetics is evolving.^[48]

31.69 The Anti-Discrimination Commission of Queensland was also of the view that the breadth and diversity of the employment context would make the development of appropriate standards very difficult.

It has taken almost 10 years for the Disability Standards for Accessible Public Transport to be implemented. The access issues occurring in the transport industry are extensive. However, they are significantly less than those that would be faced if it was sought to issue standards that covered the entire employment sector.^[49]

31.70 In the Inquiry’s view, there is a need for detailed guidance for employers on the use of genetic information in the workplace. It is important to ensure that persons are not excluded from employment on the basis of unnecessary or irrelevant tests or on the basis of misinterpretation of test results.

31.71 The Inquiry notes that the development and approval of standards has proved to be difficult and time-consuming. The Inquiry is of the view, however, that the process itself may be beneficial by raising awareness of the issues among stakeholders. The Inquiry recommends that the Attorney-General consider the development of Disability Standards in this area.

31.72 As an interim measure, the Inquiry recommends that HREOC, in consultation with the Human Genetics Commission of Australia (HGCA) and other stakeholders, should develop guidelines on the collection and use of genetic information in employment. The guidelines could address a range of issues including:

• the meaning of unlawful disability discrimination in the employment context;
• requests for genetic information under s 30 of the DDA;
• the inherent requirements exception and the circumstances in which genetic information may be relevant, for example, in relation to occupational health and safety issues;
• procedures for the collection of genetic information from applicants and employees, including the use of medical practitioners as intermediaries and genetic counsellors; and
• the use of genetic information by employers including interpretation of the information and appropriate responses to information.

31.73 In Chapter 32 the Inquiry recommends that the HGCA in consultation with the National Occupational Health and Safety Commission and other stakeholders, prepare national guidelines dealing with the collection and use of genetic information for occupational health and safety purposes. If the Attorney-General decides to proceed with Disability Standards, it will be important to ensure that the principles and procedures adopted are consistent as far as possible with the guidelines to be developed in the occupational health and safety context.