Genetic status and disability in the DDA

9.56 If discrimination on the grounds of genetic status is to be dealt with under existing legislation, as recommended, the most relevant piece of federal legislation is the DDA. While some cases of discrimination on the ground of a person’s genetic status may give rise to issues under the RDA and the SDA, most cases will involve discrimination on the basis that a person’s genetic status is disabling in some way, or is perceived to be disabling. It is important to ensure that the DDA protects individuals from discrimination in these circumstances.

9.57 There are a number of ways in which the DDA could be clarified in relation to genetic discrimination. It would be possible, for example, to amend the short title or the objects clause of the Act to indicate that it was intended to apply to discrimination on the ground of genetic status. Another option would be to clarify the existing definition of ‘disability’ to ensure that it includes genetic status or to include genetic status as a new and separate ground under the Act. Each of these options is considered below.

Short title and objects clause

9.58 DP 66 sought feedback on the proposal that the name of the DDA be changed to the Disability and Genetic Discrimination Act 1992. The proposal was put forward on the basis that the change would bring some of the advantages cited in the Centre for Law and Genetics’ submission quoted above, that is, heightened visibility and public awareness and that it would emphasise that genetic status did not necessarily equate with disability.

9.59 DP 66 also sought feedback on s 3 of the DDA, which sets out the objects of the legislation. At present this provision does not expressly address the harm caused by discrimination on the basis of imputed, past or possible future disabilities. An amended objects provision could make clear that the DDA is intended to prohibit discrimination of this kind, including discrimination on the basis of genetic status.

Submissions and consultations

9.60 Opinion in submissions was divided on changing the name of the DDA. The Anti-Discrimination Commission of Queensland, the Genetic Support Council of WA, the Human Genetics Society of Australasia and others expressed the view that a change of name would assist with community awareness. However, the Centre for Genetics Education, although expressing support for the name change, cautioned that including the term ‘genetics’ in the title of the DDA would more closely link the concepts of genetics and disability:

The concern is that it will increase the possibility of linking a positive genetic test result with a “disability”—already that is occurring and much effort is put into correcting this misconception both at the individual clinical level and in genetics education generally.^[34]

9.61 The Anti-Discrimination Board of NSW did not support amending the name of the DDA:

In our view this would suggest that a distinction should or does exist where people are discriminated against on the basis of future or imputed conditions detectable by genetic testing, as compared with people who are discriminated against on the basis of future or imputed conditions which are not detected by genetic testing. Concerns about access to and use of health information are no different in relation to people with conditions or predisposition to conditions which can be determined by genetic testing than for other people with disabilities, whether actual, future or imputed.^[35]

9.62 The Centre for Law and Genetics was also opposed to changing the name of the legislation:

Not only would this be likely to attract criticism of genetic exceptionalism (ie singling out genetic conditions for special treatment), it would run counter to the essential framework of the legislation. The legislation already covers discrimination on the basis of a risk of disability in the future or on grounds which are imputed to a person: to deal with genetic status separately (on the grounds that this is not a disability which presently exists and indeed, may never materialise) would give the wrong impression that the Disability Discrimination Act 1992 (Cth) is only concerned with existing disability and may therefore undermine much of the good work that has been done in educating the community about avoiding disability discrimination in all its forms.^[36]

9.63 The acting Disability Discrimination Commissioner, while remaining open to community views on this issue, noted that the DDA applies in numerous cases that do not involve a disability, as that term is generally understood. He concluded:

It is clearly not possible for a concise title to reflect all of the other areas where ‘disability’ may not be a clear enough sign that the legislation applies, and concerns may be raised as to why genetic issues alone should be highlighted.^[37]

9.64 There was more consistent support for an amendment to the objects clause in the DDA,^[38] although the Anti-Discrimination Board of NSW expressed the view that, as the objects clause was drafted in a very general way, it may not be appropriate to include a provision specifically about genetic discrimination.

Inquiry’s views

9.65 The Inquiry is of the view that, on balance, the arguments against changing the name of the DDA are stronger than those in favour of change. The Inquiry has generally resisted making recommendations in this Report based on genetic exceptionalism. Discrimination on the ground of genetic status fits within the existing conceptual framework of the DDA. Including ‘genetic’ in the title of the Act may cause confusion in relation to the legal meaning of the term ‘disability.’ The Inquiry believes that community awareness on this issue can be raised in other ways, for example, through education and publicity.

9.66 However, the Inquiry is of the view that it would be desirable to make a statement in s 3 of the DDA, which sets out the objects of the Act, indicating that the Act applies to discrimination on the basis of past, present, possible future or imputed disabilities, including discrimination on the ground of genetic status. A statement of this kind would sit more comfortably with the existing high level statements in s 3 and could make clear that discrimination on the basis of genetic status is simply one example of discrimination on the basis of imputed or possible future disability.

Genetic status as a new ground

9.67 In some cases a person’s genetic status may give rise to a disability in the generally understood sense. As noted above, however, this is not always the case, particularly in relation to genetic information that is merely predictive and which may indicate nothing more than an elevated level of risk of developing a disorder at some time in the future. An editorial in the British Medical Journal has remarked that:

On a fundamental level, genetic science is forcing a re-examination of the concept of normality itself, by showing that everyone’s genome is different and that we are all in some sense ‘abnormal’. We each carry genetic variants, many of which will have no detectable impact in normal circumstances, but some undoubtedly will alter our risk of disease or may, with a partner carrying similar variations in their genomes, result in the birth of a child with a recessive genetic disorder.^[39]

Submissions and consultations

9.68 The Centre for Law and Genetics expressed the view that adding genetic status as a separate ground in the DDA

is not a justifiable response given the range of conditions and disorders (past, present, future and imputed) that this legislation is intended to cover. Singling out one category, in the form of genetic status would create an imbalance in the legislation and would probably give rise to claims of unfair special treatment for those who are at risk of genetic disease.^[40]

Inquiry’s views

9.69 The legal concept of disability as it is used in the DDA is wide and does not necessarily equate with the general understanding of the term. This is because the DDA is not intended to address only discrimination against people with existing disabilities but to address the harm caused by incorrect assumptions made about the existence, or impact, of disabilities. Discrimination based on an incorrect assumption that a person has a disability has the potential to cause as much harm as discrimination on the basis of an actual disability. This is why the definition of disability in the DDA extends to imputed disabilities, as well as disabilities that existed in the past or may exist in the future, in addition to existing disabilities.

9.70 The Inquiry is of the view that discrimination on the basis of genetic status fits within this wider legal concept of disability discrimination. Although adding a separate ground to the Act may help to emphasise that genetic status does not necessarily equate with disability, it would also add considerably to the complexity of the legislation. On balance, the Inquiry does not support including genetic status as a separate ground under the DDA. However, as discussed in the following section, the definition of ‘disability’ should be amended to clarify its application to discrimination based on genetic status.

Definition of disability

Current law

9.71 If discrimination on the ground of genetic status is to be dealt with under the framework of existing legislation, and if genetic status is not to be an independent ground of discrimination, it is important to ensure that the definitions in the DDA are wide enough to cover genetic issues. Section 4(1) of the DDA provides as follows:

‘disability’ in relation to a person means –

(a) total or partial loss of the person’s bodily or mental functions; or

(b) total or partial loss of a part of the body; or

(c) the presence in the body of organisms causing disease or illness; or

(d) the presence in the body of organisms capable of causing disease or illness; or

(e) the malfunction, malformation or disfigurement of a part of the person’s body; or

(f) disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction; or

(g) a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgement or that results in disturbed behaviour;

and includes a disability that:

(h) presently exists; or

(i) previously existed but no longer exists; or

(j) may exist in the future; or

(k) is imputed to a person.

9.72 The term ‘disability’ is defined to a high level of specificity in the DDA. For example, para (d) (the presence in the body of organisms capable of causing disease or illness) was included in the definition to make clear that asymptomatic conditions such as HIV were covered. The term ‘impairment’ is also defined in the regulations made under the HREOC Act but the term ‘physical or mental disability’ is not defined in the WRA.

9.73 There is little doubt that the existing definition of disability in s 4 of the DDA covers genetic conditions that are manifested by current symptoms. Such symptoms may result, for example, in the partial loss of a person’s bodily or mental functions (para (a)) or in the malfunction of a part of a person’s body (para (e)). Under these paragraphs it is not necessary to consider the cause of the disability, only the effect on the individual.

9.74 The more problematic issue is whether the definitions in the DDA and in other anti-discrimination legislation are wide enough to address discrimination on the basis of genetic status where a person is presently asymptomatic. The DDA specifically covers disabilities that ‘may exist in the future’ or are ‘imputed to a person’, as well as past or present disabilities. The legislation in New South Wales and Tasmania is similar to the DDAin this respect.^[41] However, not all Australian legislation has such wide coverage.

9.75 The Northern Territory legislation contains an inclusive definition of impairment but does not expressly refer to future impairments.^[42] It may be open to a court to find that impairments arising in the future fall within this definition. In Western Australia, South Australia and the Australian Capital Territory, the legislation includes impairments imputed to a person and the imputation is not limited to past or present impairments.^[43] It is also possible that a court may interpret these provisions to include future impairments. In other States the legislation has exclusive definitions of disability or impairment, which do not refer to future or imputed disabilities or impairments.

9.76 The definition of disability in the DDA is divided into two parts—the physical description of what amounts to a disability is set out in para (a)–(g), while some of the circumstances in which disabilities will be recognised for the purposes of the Act are set out in para (h)–(k). These circumstances include present, past, possible future and imputed disabilities. The difficulty with the definition is that para (h)–(k) must relate to a type of physical or mental manifestation in the terms of para (a)–(g) of the definition.

9.77 Is a genetic mutation that increases a person’s risk of heart disease, for example, an ‘organism capable of causing disease or illness’ (para (d))? Is it a ‘malfunction, malformation or disfigurement of a part of the person’s body’ (para (e))? While it might be possible to argue that a genetic mutation is a malformation of part of a person’s body, it seems clear that these provisions were not drafted with this issue in mind and that genetic mutations of this sort do not fit neatly into the existing terminology.

9.78 It is more likely that discrimination on the basis of a genetic mutation that increases the risk of a person developing a particular disorder is covered by para (j) of the definition of disability, coupled with para (a), (b) or (e). To take the case of a genetic mutation that increases the risk of heart disease, under the DDA the ‘disability’ does not arise directly because of the person’s present genetic mutation, but because that mutation indicates that a ‘partial loss of the person’s bodily functions’ (para (a)) ‘may exist in the future’ (para (j)). In short, the disability is not the genetic mutation itself but the possible future expression of that mutation through the malfunctioning of a part of the person’s body.

9.79 The terms ‘impairment’ and ‘disability’ are also used in the regulations made under the HREOC Act and in the WRA. Both pieces of legislation, which are discussed in more detail in the employment context in Chapter 30, use general language such as mental, intellectual or psychiatric disability and physical disability without defining these terms. The Human Rights and Equal Opportunity Commission Regulations 1989 (Cth) (HREOC Regulations) do, however, include a definition of impairment and expressly cover past and imputed disabilities. The WRA does not. Neither piece of legislation specifically includes possible future disabilities.

Submissions and consultations

9.80 A number of submissions suggested that there was no need to amend the existing definition in the DDA. The Australian Chamber of Commerce and Industry, for example, expressed the view that any change would be premature.^[44] The Law Society of NSW,^[45] the acting Disability Discrimination Commissioner^[46] and the Anti-Discrimination Board of NSW submitted that the existing definition in the DDA is likely to cover discrimination on the basis of genetic status.^[47] The Anti-Discrimination Board of NSW stated in its submission that:

In our view the definition of disability in both the DDA and the ADA already adequately covers discrimination on the ground of a person’s genetic make up. Given the breadth of the definition of disability in the DDA, we cannot conceive of a condition or predisposition to a condition discernible by genetic testing which would not fall within the current definition.^[48]

9.81 While the Law Society did not support amending the definition, the acting Disability Discrimination Commissioner, the Anti-Discrimination Board of NSW and a significant number of other submissions including the Genetic Support Council of Western Australia,^[49] the Australian Medical Association,^[50] the Australian Council of Trade Unions,^[51] the Human Genetics Society of Australasia,^[52] the Centre for Genetics Education,^[53] the Investment and Financial Services Association^[54] and the Queensland Government^[55] expressed the view that this should be put beyond doubt. The Anti-Discrimination Board of NSW set out the benefits of clarification:

Although the ADB considers the definition of disability in the ADA and DDA covers genetic discrimination, there is a strong public interest rationale for making such coverage explicit in anti-discrimination legislation. Such clarification would:

•  

  • reflect the current state of the law under the DDA and ADA;

  • have an educative effect;

  • serve a symbolic function in clarifying that such discrimination is unlawful conduct under anti-discrimination law; and

  • provide certainty regarding people’s rights and responsibilities under anti-discrimination law.^[56]

9.82 The Centre for Law and Genetics expressed the view that, not only should the definitions in the DDA and the regulations made under the HREOC Act be amended to clarify that they include genetic status, the regulations should be brought into line more generally with the definition of disability in the DDA. The Centre questioned the use of the different terms ‘disability’ and ‘impairment’ and suggested that the same terminology should be used in both pieces of legislation. The acting Disability Discrimination Commissioner noted that differences between the two provisions had the potential to give rise to confusion.

9.83 Most submissions that addressed this issue were also supportive of amending the definition of impairment in the regulations so that the HREOC Act applies to discrimination on the ground of a disability that may exist in the future.^[57] The acting Disability Discrimination Commissioner noted that any amendment to the grounds of discrimination set out in the regulations may require consultation with representative employers’ and workers’ organisations under Article 1(b) of the International Labour Organization Convention 111 on Discrimination in Employment and Occupation 1958.

9.84 The Department of Employment and Workplace Relations noted that the Australian Industrial Relations Commission is required by s 93 of the WRA to have regard to the principles embodied in the DDA in the exercise of its functions. The Department did not support inserting a definition into the WRA on the basis that it would limit the flexibility of the courts to consider this issue on a case-by-case basis.^[58] The Anti-Discrimination Commission of Queensland suggested, however, that the WRA should be amended so that the term ‘disability’ is defined by reference to the DDA to ensure consistency.^[59] The acting Disability Discrimination Commissioner was also of this view.^[60]

Options for reform

9.85 A range of approaches to clarifying the definition of ‘disability’ in the DDA were put forward in submissions, including a return to the use of simple, undefined terms; the addition of paragraphs to the existing definition; and the inclusion of a descriptive preface to the definition.

9.86 ACROD Ltd was supportive of a return to a simpler definition of ‘disability’ on the basis that this would bring greater transparency and predictability.^[61] It is not clear, however, that this would assist in clarifying the operation of federal anti-discrimination law. Indeed, there is a danger that under the WRA, in particular, as currently drafted, it would be difficult to bring an action for unlawful termination on the basis of genetic status indicating an increased risk of future ill health.

9.87 The Anti-Discrimination Board of NSW, while holding the view that the existing definitions in the DDA and the Anti-Discrimination Act 1977 (NSW) were wide enough to cover genetic status, went on to suggest in its submission to the Inquiry:

That the definition of disability in the DDA and all State/Territory anti-discrimination legislation be amended to make clear that disability includes genetic mutations or chromosome abnormalities:

•  

  • causing or capable of causing disease, illness, malfunction, malformation or disfigurement of a part of the person’s body, or

  • resulting in the person learning differently from a person without the disorder or malfunction, or

  • affecting a person’s thought processes, perception of reality, emotions or judgment or that results in disturbed behaviour.^[62]

9.88 This suggestion makes clear that not all genetic variation should be covered by the DDA. Many genetic variations result in differences that could not be described as disabilities, such as eye or hair colour. Some genetic variations that can be described as abnormal do not result in any disabling difference and indeed may result in an individual being placed at an advantage in relation to the rest of the community. Some genetic mutations, for example, appear to confer increased immunity to particular diseases. The object of the DDA is not to protect those who are different, because we all differ from each other, but to protect those who are, or who are perceived to be, disabled.

9.89 The Anti-Discrimination Commission of Queensland made the following suggestion:

paragraph (ga) could be added to the definition of “disability” in section 4 of the DDA, along the lines of the following:-

“(ga) the person’s genetic status as defined in section 4A of this Act.”

Section 4A could then define “genetic status” with reference to a person’s genetic predisposition to developing one of the conditions set out in the definition of “disability” in section 4 .

“4A “genetic status” means variations in a person’s DNA, RNA, genes or chromosomes that predispose that person to developing: –

•  

  • total or partial loss of the person’s bodily or mental functions; or

  • total or partial loss of a part of the body; or

  • the malfunction, malformation or disfigurement of a part of the person’s body; or

  • a disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction; or

  • a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgement or that results in disturbed behaviour.”^[63]

9.90 Another possible approach is adopted in the preface to the definition of ‘disability’ in s 3 of the Anti-Discrimination Act 1998 (Tas) which provides that:

“disability” means any of the following that presently exists, previously existed but no longer exists, may exist in the future, whether or not arising from an illness, disease or injury or from a condition subsisting at birth.

It could be argued that ‘a condition subsisting at birth’ includes a person’s genetic status, although this is not express.

9.91 A number of submissions suggested that the definition should be amended in consultation with genetic scientists,^[64] genetic support groups,^[65] the Australian Institute of Health and Welfare,^[66] the Investment and Financial Services Association^[67] and other relevant stakeholders.^[68]

Inquiry’s views

9.92 The Inquiry considers that there is value in providing greater certainty and raising awareness in relation to the issue of genetic discrimination. There is a possibility that the existing definition in the DDA will be construed narrowly by the courts so as to exclude predictive genetic information. The Inquiry is of the view that there is no policy justification for excluding discrimination based on possible future genetic conditions from coverage by the DDA. As well as having an educative effect, an appropriate amendment would put the matter beyond doubt and would ensure that the question did not need to be tested in the courts. The Inquiry recommends, therefore, that the definition of disability in the DDA be amended to specifically include genetic status.

9.93 The definition of impairment in the regulations made under the HREOC Act should also be amended to make clear that the HREOC Act applies to discrimination on the ground of genetic status. The Inquiry also supports amendments that would make the definitions in the DDA and the HREOC Regulations consistent in a more general sense. The Inquiry is of the view that the term ‘disability’ in the WRA should be expressly defined by reference to the definition in the DDA. This would be consistent with the policy underpinning s 93 of the WRA, discussed above, and would not, in the Inquiry’s view, unduly limit the discretion of the courts.

9.94 The Inquiry does not propose to recommend a specific form of words for the amendments but is of the view that they should be developed in consultation with stakeholders, including the Human Genetics Commission of Australia, to ensure that the language is clear, appropriate and comprehensive. The Inquiry notes that, in developing a form of words, it will be important to limit the definition to those aspects of genetic status that are associated with a past, present, future or imputed disability.