Requests for genetic information

31.38 Requests for, or requirements to produce, genetic information lie at the heart of concerns about genetic discrimination in employment. Such requests could include a request for information about family medical history, the results of a past genetic test or a request to undertake a new genetic test. Several submissions expressed the view that the circumstances in which employers are able to request or require such information should be very limited. Irrelevant questions about genetic status are unlikely to contribute to fair recruitment and employment processes. This is particularly so in relation to genetic information because of its sometimes predictive nature and the possibility that the information may be misinterpreted or misapplied.

31.39 The DDA and other anti-discrimination laws are, in general, aimed at acts of discrimination such as refusing to employ a person because of that person’s disability or perceived disability. However, in order to create an environment in which acts of unlawful discrimination are less likely to occur, some anti-discrimination legislation also prohibits the collection of information upon which those discriminatory acts might be based. Against this background, it is important to ensure that genetic information is requested or required by employers only in appropriate circumstances.

Current law

31.40 As discussed in Chapter 7, the collection of personal information is regulated by privacy laws. However, the DDA, the SDA, and anti-discrimination legislation in Queensland, Victoria, the ACT and the Northern Territory also contain express provisions regulating requests for information in connection with, or for the purposes of, an act of discrimination.^[31]

31.41 Section 30 of the DDA currently provides:

If, because of another provision of this Part (other than section 32), it would be unlawful, in particular circumstances, for a person to discriminate against another person on the ground of the other person’s disability, in doing a particular act, it is unlawful for the first‑mentioned person to request or require the other person to provide, in connection with or for the purposes of the doing of the act, information (whether by completing a form or otherwise) that persons who do not have a disability would not, in circumstances that are the same or are not materially different, be requested or required to provide.

31.42 Section 30 is not limited to requests for information by employers. It applies to requests for information in all the areas covered by the DDA.

31.43 Section 27(1) of the SDA is in similar terms. In its report, Pregnant and Productive: It’s a Right not a Privilege to Work while Pregnant,^[32] HREOC noted that the meaning of the SDA provision was unclear and recommended that it be amended to simplify and confirm the intent of the section. The Sex Discrimination Amendment (Pregnancy and Work) Bill 2002 (Cth), currently before the Commonwealth Parliament, forms part of the Government’s response to the HREOC report and is intended to clarify the meaning of s 27(1).

Submissions and consultations

31.44 The Anti-Discrimination Board of NSW, in its submission to the Inquiry, expressed the view that s 30 of the DDA, like s 27(1) of the SDA, should be clarified. It is not clear, for example, whether the provision prohibits questions asked of all applicants or employees or only questions asked specifically of individuals with a disability. The HREOC guidelines on disability discrimination in employment state that a question asked of all applicants may amount to unlawful indirect discrimination^[33] but it remains unclear whether this sort of question would be unlawful under s 30.

31.45 In examining alternative models for a provision of this kind, it is important to consider whether an employer should be able to seek information about genetic status or to request that a person undergo genetic testing. The ACTU made the following recommendation in its submission:

The ACTU recommends that employers be prohibited from requiring, requesting, collecting or disclosing information derived from genetic testing of current or potential employees.^[34]

31.46 HREOC’s policy, however, in relation to requests for information about disability is as follows:

The Commission considers that discouraging, or unnecessarily restricting, discussion or inquiries regarding a person’s disability in … legitimate work related respects would be damaging to effective equality of opportunity and thus would be contrary to the objects of the DDA as well as presenting difficulties for employers. The Commission does not interpret the DDA as having this effect.^[35]

31.47 While this policy makes clear that employers should be able to seek some information about disability, those inquiries are limited to ‘legitimate work related’ issues. The Anti-Discrimination Board of NSW stated:

There are insufficient safeguards in place to ensure that the information sought by employers relates to the inherent requirements of the particular position in issue. … In order to comply with anti-discrimination legislation, pre-employment medicals should only be used to assess a person’s capacity to carry out the inherent or essential requirements of a position, once the employer has identified the preferred candidate.^[36]

31.48 The Genetic Support Council of Western Australia expressed the view that employers should be able to collect genetic information only where it is relevant for occupational health and safety purposes.^[37]

31.49 HREOC states in its guidelines for employers that:

The DDA does not set out particular forms of words as permitted or prohibited. Rather, the lawfulness of inquiries or examinations under the DDA depends on whether they are for a legitimate purpose and are a reasonable means for achieving that purpose.

Employers should ensure that

• they know why they are collecting information
• this is a legitimate purpose
• information is only used for the purposes for which it was properly collected and is protected against improper access or disclosure.

Employers are also advised to make clear the purpose for which they request or require disability information, to reduce misunderstandings which might lead to fears of discrimination.^[38]

31.50 The acting Disability Discrimination Commissioner noted in his submission that:

The basis of this advice, however, requires interpretation of several provisions in the DDA rather than emerging clearly from section 30 which deals expressly with requests for information. The drafting of this section, borrowed from the Sex Discrimination Act, is not easily understood, and may be open to significantly different interpretations.^[39]

Options for reform

31.51 A United States Executive Order of 8 February 2000 provides guidance on employment with US federal departments and agencies. The Order, though not legally binding, seeks to prohibit entirely requests for genetic tests or test results and allows only limited use of family medical history. Genetic monitoring of biological effects of toxic substances in the workplace is permitted, however, subject to certain safeguards.^[40]

31.52 The Genetic Information Nondiscrimination Bill 2002 (US), currently before the United States Congress, seeks to extend the policy set out in the Executive Order to the private sector. The Bill makes it unlawful for an employer to request, require or purchase genetic information about an employee.^[41] It is not unlawful, however, where the employer is imposing a ‘qualification standard, test or other selection criterion’, which is shown to be job related and consistent with business necessity. A qualification standard may include a requirement that a person not pose a direct threat to the health or safety of other individuals in the workplace.^[42] Collection of information is allowed for genetic monitoring of biological effects of toxic substances in the workplace.^[43] Unlike the Executive Order, the Bill does not impose a strict prohibition on requests for genetic tests or test results. Instead, it requires that any test be shown to be job-related and consistent with business necessity.

31.53 Another possible model, currently under consideration in Australia, is the Sex Discrimination Amendment (Pregnancy and Work) Bill 2002 (Cth), which proposes to replace existing s 27(1) of the SDA with the following provision:

It is unlawful for a person (the first person)to request or require another person (the other person)to provide information (whether by way of completing a form or otherwise)if:

1. the information is requested or required in connection with, or for the purposes of, the first person doing a particular act; and
2. under Division 1 or this Division, it would be unlawful in particular circumstances for the first person, in doing that act, to discriminate against the other person on the ground of the other person’s sex, marital status, pregnancy or potential pregnancy; and
3. persons:

(i) of the opposite sex; or

(ii) of a different marital status; or

(iii) who are not pregnant or potentially pregnant;

as the case requires, would not be requested or required to provide the information in circumstances that are the same or not materially different.

31.54 The language is somewhat clearer than the existing provision and it would be possible to redraft s 30 of the DDA along similar lines. However, the proposed amendment is still unclear in relation to the lawfulness of questions asked of all applicants.

31.55 The Anti-Discrimination Board of NSW has suggested that s 26 of the Anti-Discrimination Act 1992 (NT) provides a clearer and more appropriate model for reform. Section 26 provides in part:

(1) A person shall not ask another person, whether orally or in writing, to supply information on which unlawful discrimination might be based …

(3) Subsection (1) does not apply if the person proves, on the balance of probabilities, that the information was reasonably required for a purpose that did not involve discrimination.

31.56 Like s 30 of the DDA, this provision does not specifically address genetic information. If a provision modelled on this section were included in the DDA, employers would be prohibited from asking questions about any disability, including genetic status, unless they could prove that the information was reasonably required for a purpose that did not involve discrimination. An employer would have to be able to demonstrate, for example, that the information was reasonably required to ensure that the person was able to perform the inherent requirements of the job, including the ability to work safely.

31.57 Section 26 also includes a range of exceptions where a request for information is necessary to comply with, or specifically authorised by, a law, an order of a court, an award and so on. These exceptions would need careful consideration if the model were adopted at the federal level.

31.58 The Anti-Discrimination Commission Queensland commented in relation to s 124 of the Queensland Act, which is in similar terms to s 26 of the Northern Territory Act:

The ADCQ has found that section 124 is a very useful provision in terms of community education about restrictions on what information can be sought. Our experience is that if a person is directed to this section, they give greater consideration to the relevance of the information they are seeking and are more aware of the need to avoid taking irrelevant, discriminatory matters into account.^[44]

31.59 There is an important difference between s 26 of the Northern Territory Act and s 30 of the DDA. Under provisions such as s 30 of the DDA and s 27(1) of the SDA, the onus falls on the employee to show that information was requested in connection with or for the purposes of discrimination. Under s 26 of the Northern Territory Act the onus falls on the employer to prove that information was reasonably required for a non-discriminatory purpose. The onus of proof under the unlawful termination provisions of the WRA also falls on the employer once disability has been raised as an issue.^[45] A reversal of the onus of proof under s 30 of the DDA would provide a higher level of protection for employees than currently exists.

31.60 The acting Disability Discrimination Commissioner stated that:

Section 26 of the Northern Territory Anti-Discrimination Act appears to provide a more suitable starting point as noted by the NSW ADB. This is not, however, to recommend precisely the same drafting, as in HREOC’s view the Northern Territory provision may present some of the risks of discouraging appropriate discussion of disability issues previously raised by HREOC and noted by the Inquiry.

In particular, consideration is needed of whether employers requesting information should face a legal onus of proof of the legitimacy of requests for information, or only an evidential burden as applies to issues of unjustifiable hardship under the DDA. HREOC regards imposing an evidential burden only as the preferable implementation of a requirement to ‘demonstrate’ a legitimate purpose.

Inquiry’s views

31.61 The Inquiry is of the view that in relation to genetic information (whether genetic test results or family medical history), the DDA should prohibit an employer from requesting or requiring such information unless the information is reasonably required for a purpose that does not involve unlawful discrimination. An example would be information that is used to assess whether a person is able to perform the inherent requirements of a job.

31.62 Section 30 of the DDA does not make a clear statement of this kind and should be amended. Although the Inquiry is particularly concerned about requests by employers for genetic information, it recognises that there may be sound reasons for a general amendment that would have a wider application, such as an amendment relating to requests for all information in the areas covered by the DDA. However, consistently with the Inquiry’s Terms of Reference and the submissions received, the recommendation below is limited to questions in relation to genetic information in the employment context.

31.63 The proposed amendment to s 27(1) of the SDA goes some way towards clarifying that section, but a similar amendment to s 30 of the DDA would not resolve all the difficulties in the interpretation of the latter provision. In the Inquiry’s view, s 26 of the Anti-Discrimination Act 1992 (NT) provides an appropriate starting point for reconsideration of s 30 of the DDA. The Inquiry notes the acting Disability Discrimination Commissioner’s concern in relation to reversing the onus of proof in s 30 and that this may run counter to policy considerations underpinning the DDA. It was suggested that it would be preferable to impose an evidential burden on employers. Employers would be required to produce evidence that a question was asked for a reason that did not involve discrimination but would not bear the onus of proving, on the balance of probabilities, that this was the case. In the Inquiry’s view a provision that places an evidential burden on employers would draw an appropriate balance between the rights of the parties and is consistent with the principle that a person who alleges that another has engaged in unlawful conduct must prove his or her case.

31.64 In drafting an amendment it will be important to consider what exceptions might be desirable, such as requests for information necessary to comply with, or specifically authorised by, occupational health and safety legislation.