Protection of human genetic information: Submission in response to ALRC Discussion Paper 66

Professor David Weisbrot
President
Australian Law Reform Commission
GPO Box 3708
Sydney NSW 2001

Dear Professor Weisbrot

I am pleased to enclose a submission in response to the ALRC's Discussion Paper DP66 on protection of human genetic information.

If further discussions on issues raised in this submission would be useful may I suggest Mr David Mason, Director of this Commission's Disability Rights policy unit, as first point of contact, by phone on 02 9284 9724 or by email on david.mason@humanrights.gov.au .

Yours sincerely

Dr Sev Ozdowski OAM
Acting Disability Discrimination Commissioner
16 January 2003

Submission in response to Discussion Paper DP66

As the Inquiry would be aware the Human Rights and Equal Opportunity Commission (HREOC) has been consulted throughout the conduct of this reference. The Aboriginal and Torres Strait Islander Social Justice Commissioner made a submission in response to the earlier Issues Paper for this inquiry. Most HREOC input to this point, however, has been through less formal discussions and communication between officers.

With the release of the Discussion Paper containing specific proposals it appears an appropriate point to put responses more publicly on the record, in particular regarding disability discrimination issues, through a formal submission.

In general this submission endorses the approaches indicated by proposals in the Discussion Paper, and seeks to add suggestions for their implementation. This endorsement is made subject to the need for further consultation in some respects.

The following comments in this submission are organised by reference to proposals and questions in the Discussion Paper.

Anti-Discrimination Law

Proposal 8-1. Discrimination on the ground of genetic status should continue to be dealt with under the framework of existing federal, state and territory anti-discrimination laws, subject to the specific proposals for legislative amendments identified in this Discussion Paper.

Response:

I endorse the approach of confirming the applicability, and where necessary improving the operation, of existing mechanisms for dealing with discrimination - and in particular the Disability Discrimination Act (DDA) and equivalent State and Territory provisions - rather than introducing specific legislation to deal with genetic discrimination alone.

This is a matter of effective use of resources and experience in use of existing mechanisms, and also of avoiding giving unduly exceptional status or priority to genetic related discrimination at the expense of other discrimination issues.

Developments regarding genetic information are likely to expand the range of situations where people face discrimination or potential discrimination on the basis that they have or are regarded as having a disability, or may develop a disability in future.

Accordingly genetic discrimination may be an issue of concern for many members of the community who have not seen themselves as affected or potentially affected by disability discrimination (notwithstanding the substantial proportion of the community who do have a disability and the potential for anyone to acquire or be affected by disability during life).

However, for many members of the Australian community who have a disability which is obvious and present, rather than potential and hidden at the genetic level, issues of being treated as a member of an "underclass" as a result of departure from perceived standards of normality are a matter of daily realities, rather than a matter of potential and future threat.

While some issues presented by genetic discrimination are novel, many are not, and are best approached by ensuring that existing mechanisms for dealing with disability discrimination are clearly applicable.

Question 8-1. Should the name of the Disability Discrimination Act 1992 (Cth) (DDA) be amended to the Disability and Genetic Discrimination Act 1992 (Cth)? Should the objects of the DDA be amended to clarify that discrimination on the basis of genetic status falls within the Act?

Response:

As noted, I supports the objective of making clearer that the DDA covers genetic discrimination.

In addition to changes to substantive provisions discussed below, I would support revisiting of the objects clause of the legislation in this context.

I would be interested to see community views regarding a change to the short title of the legislation, including those which may emerge from other submissions.

Such a change would have the advantage of confirming in a simple and easily stated way the applicability of the legislation to genetic discrimination issues for the benefit of people who would not readily identify with a "disability" label.

However, in addition to genetic discrimination issues there are also numerous other issues where, although the DDA applies in law, the disability label does not fit as a matter of common perception, such that people affected by discrimination may fail to take advantage of their rights and people with relevant responsibilities may fail to take the applicability of the legislation sufficiently into account.

  • While some people affected by mental illness (directly, or as families or carers or as advocates) are familiar with the label of psychiatric disability, others may have the view that they are not "disabled" by their illness or condition and thus may believe that the DDA is not for them.
  • A similar issue also applies not only to people affected by other illnesses, including cancer survivors, but to many other categories of disability. This is so although the substance of the legislation avoids the mistake of the United States and United Kingdom legislation, which require that a person be "substantially limited" in a "major life activity" to benefit from the legislation, so that perversely the less a person is "disabled" by their disability the less protection they have against unjustified discrimination. The DDA does not require that a disability be permanent, or severe, or current, or unable to have its effects alleviated by appropriate equipment or treatment. It is no defence for a discriminator to say that the variation from a presumed standard of normality is so common or so little disabling as not to be a disability. This is illustrated by a recent complaint against a Federal Government Agency which insisted with no apparent justification that employees engaged in inspection duties should be able to pass an eye test without wearing glasses. Most people with glasses would not identify as having a disability, even though the legislation does protect them if they face discrimination.
  • Many people who have impaired vision or hearing or mobility or other disabilities as a result of advancing age do not appear to identify readily as having a disability. This may be because of a realistic perception that these impairments are normal particularly as a person gets older, combined with the common perception that disability is not normal.

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.

In particular, if a change of title to include reference to genetic discrimination is to be made, perceptions may need to be dealt with that, rather than the object being only to confirm that the legislation covers genetic discrimination issues, these issues are to be given priority equal to all other disability issues combined - which HREOC would not see as justified.

Proposal 8-2. Federal anti-discrimination legislation should be amended to:

  • define 'disability' in the DDA and define 'impairment' in the regulations made under the Human Rights and Equal Opportunity Commission Act 1986 (Cth) (HREOC Act) to clarify the application of the legislation to discrimination based on genetic status;

  • define 'impairment' in the regulations made under the HREOC Act to clarify the application of the legislation to a disability that may exist in the future;

  • insert a definition of 'disability' in the Workplace Relations Act 1996 (Cth) to conform with federal anti-discrimination legislation, as amended by these proposals.

Response:

Definition of disability in DDA:

I agree with views that although genetic discrimination at least in most instances is already covered by the DDA, it would be desirable to make this coverage clearer and beyond dispute.

Definition of impairment for HREOC Act purposes:

Since the passage of the DDA, the coverage of impairment in the HREOC Act has less practical significance than previously. However, I agree that there is no good reason for the definition of impairment for the purposes of this Act to be more restrictive than that in the DDA (and in fact that some confusion may result from this) Accordingly, changes to the DDA definitions should be reflected in the regulations to the HREOC Act which define impairment. It would also be appropriate to take the opportunity to clarify that for HREOC Act purposes future disability is also covered.

It should be noted that in the case of State of Victoria, State of South Australia and State of Western Australia v The Commonwealth the High Court drew attention to the need for consultation requirements to be satisfied before there could be valid use of, or action based on, the provision in the Discrimination (Employment and Occupation) Convention for parties to include additional grounds of discrimination, such as disability. It may be that the Inquiry's consultations with trade union, employer and community representatives have already been sufficient for this purpose; however, the Inquiry may wish to direct government attention to this issue in making final recommendations.

Workplace Relations Act definition:

As I understand the present position, although the Workplace Relations Act does not itself provide a definition of disability, in practice the definition of disability from the DDA is used in practice to guide application of this Act. No good reason is apparent why the Workplace Relations Act should not state expressly that the same definition applies as for the DDA.

Proposal 8-3. The States and Territories also should consider amending their anti-discrimination legislation to accord with the policies reflected in Proposal 8-2.

Response:

In this area and more generally, HREOC supports Federal and State anti-discrimination laws taking a consistent approach wherever possible. For State laws to provide more restricted coverage than the DDA can serve only to mislead or confuse employers, service providers and others covered by the legislation regarding the extent of their obligations, since responsibilities under the DDA will apply in any case; and may cause procedural problems for complainants if they choose the wrong jurisdiction. Most States and Territories have in fact moved to harmonise their legislation with the DDA. This process should continue, through action by individual jurisdictions and preferably also through co-ordinated action through relevant Ministerial councils.

Question 8-2. What form of words should be used in federal anti-discrimination laws to ensure that they apply to discrimination based on genetic status?

A possible model is provided by the NSW Anti-Discrimination Board submission recommending that the definition of disability in the DDA (and all State/Territory anti-discrimination legislation) to 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.

However, it may also be possible to achieve an appropriate result more simply and concisely, by adding only "any genetic mutation or chromosomal variation, or the lack of such a mutation or variation, which may lead to illness or disability" to the list in the definition of disability.

It may be argued that adding such a provision could blur the lines between disability discrimination and other areas of discrimination - in particular, racial discrimination (given that some degree of genetic difference is one of the features of most racial distinctions); and of course sex discrimination (the variation between XX and XY being obviously relevant).

As noted by the Inquiry, there may be a genetic basis for racially linked variations in susceptibility to or immunity from a number of disorders. Similarly, people with XX chromosomes experience breast cancer, for example, at a far higher rate than people with the XY mutation.

However, it is not clear that this potential blurring of boundaries presents any substantial problem.

Each State and Territory as well as the Commonwealth has sex and race discrimination legislation in place, in each case administered by the same body as the applicable disability discrimination legislation. Issues of more than one ground of discrimination potentially applying to the same situation present a relatively minor administrative issue in this context. Complaints which are in substance about race or sex discrimination could still be expected to be lodged as such rather than as genetic discrimination complaints, particularly in view of the fact that race and sex discrimination laws in most cases provide more limited exceptions than the equivalent disability discrimination provisions.

Question 8-3. Should discrimination on the ground of a medical record be added to the DDA and other relevant legislation as a prohibited basis of discrimination?

Response:

I agree with the view provided by the NSW ADB submission, that no substantive effect would be added to the DDA by inclusion of a ground of unlawful discrimination on the basis of "irrelevant medical record" as is contained in Tasmanian and Northern Territory anti-discrimination legislation.

(It should be noted that if express provisions regarding medical records are to be included, drafting in terms of "irrelevant" medical record should be avoided. As with any information, medical records may be relevant and yet be given excessive weight or otherwise be used in a manner which leads to discrimination. For example discrimination may occur if relevant medical information is used to exclude a person from an employment opportunity without reference to the possibility of reasonable adjustments to remove, or reduce to acceptable levels, a health risk. )

Discrimination on the basis of information in a medical record would be covered by the DDA as discrimination on the basis of a past disability (where the record discloses a condition which the person had at the time of a prior examination), or a current disability (if the condition is still current), or a future disability (if the record discloses or is taken as disclosing a risk or propensity), or the disability of an associate (if for example the record is that of a family member or partner), or an imputed disability (if a record is wrongly taken as disclosing a condition which a person does not in fact have).

However, as with genetic discrimination it may be argued that even though the DDA already applies to discrimination on the basis of medical records, this is not sufficiently clearly stated for effective application of the law in practice.

I have therefore given some consideration to how medical records might be deal with more explicitly within the DDA.

Inclusion of medical record within the definition of disability does not seem a desirable approach. Although, as indicated above, the DDA takes a broad approach to the meaning of disability, for the legislation to state that having a medical record is in itself a disability would appears to stretch the meaning of disability further than it can credibly bear.

Another means available for achieving direct coverage of medical record discrimination as unlawful discrimination would be to include discrimination on grounds of medical record as an independent ground of discrimination in each of the areas covered by the DDA.

This is not recommended, however, as it would seem to add undue complexity to the legislation without sufficient offsetting benefit (as the Inquiry observed regarding the possibility of similar amendments to include a separate substantive ground of genetic discrimination).

An alternative approach would be to include more express reference to medical information in a revised section 30 dealing with collection of information.

I would also be prepared to consider development of guidelines on medical information and the DDA in the light of further submissions from interested parties and taking into account any final recommendations the Inquiry may make in this area.

Proposal 8-4. The regulations made under the HREOC Act should be amended expressly to include discrimination on the basis of association with a person who has an impairment or disability.

Response

As noted above I would support HREOCA coverage being brought into line with that under the DDA. However, in this context attention is required to how the DDA currently deals with associates.

The difficulty is that while the substantive sections dealing with unlawful discrimination address discrimination against associates as well as against people with a disability, the definitions of direct and indirect discrimination in sections 5 and 6 refer only to a disability of the aggrieved person.

At present (consistent with accepted rules of statutory construction) HREOC seeks to interpret and apply the DDA in a way which gives effect to the substantive provisions regarding associates rather than rendering them meaningless. It would be preferable however for the definitions of discrimination to expressly include associates rather than leaving this to interpretation.

Section 5 at present reads:

1. For the purposes of this Act, a person ( discriminator ) discriminates against another person ( aggrieved person ) on the ground of a disability of the aggrieved person if, because of the aggrieved person's disability, the discriminator treats or proposes to treat the aggrieved person less favourably than, in circumstances that are the same or are not materially different, the discriminator treats or would treat a person without the disability.

2. For the purposes of subsection (1), circumstances in which a person treats or would treat another person with a disability are not materially different because of the fact that different accommodation or services may be required by the person with a disability.

Fairly simple amendments to this provision would appear to suffice, possibly along the following lines:

(5) (1) (a) For the purposes of this Act, a person (discriminator) discriminates against another person (aggrieved person) on the ground of a disability of the aggrieved person if, because of the aggrieved person's disability, the discriminator treats or proposes to treat the aggrieved person less favourably than, in circumstances that are the same or are not materially different, the discriminator treats or would treat a person without the disability.

(1) (b) For the purposes of this Act, a person ( discriminator ) discriminates against another person (aggrieved person) on the ground of the aggrieved person being an associate of a person with a disability if, because of the aggrieved person's association with a person with a disability, the discriminator treats or proposes to treat the aggrieved person less favourably than, in circumstances that are the same or are not materially different, the discriminator treats or would treat a person who is not an associate of a person with a disability.

(2) For the purposes of subsection (1), circumstances are not materially different because a person with a disability or a person who is an associate of a person with a disability requires some adjustment or accommodation to be provided by reason of the disability, unless that adjustment would impose unjustifiable hardship.

The recommended drafting splits paragraph (1) into two separate clauses for people with a disability and associates in the interests of clarity rather than inserting associates into the existing single clause.

It will be noted that the recommended paragraph (2) incorporates an express unjustifiable hardship limitation on the duty to provide adjustments which is implicit from paragraph 5(2). This is not specifically motivated by considerations regarding genetic discrimination but by the more general issue that this paragraph was intended when the DDA was passed to incorporate a duty of reasonable adjustment rather than an absolute duty to make any and all adjustments that might be required however onerous.

DDA section 6 also fails to refer to associates. Redrafting the existing section 6 to include associates would be more complicated. It appears preferable instead to adopt the more recent drafting for indirect discrimination included in the Sex Discrimination Act. Such a provision would read along the following lines:

6.1 For the purposes of this Act, a person (the discriminator) discriminates against another person (the aggrieved person) on the ground of the disability of the aggrieved person if the discriminator imposes, or proposes to impose, a condition or requirement or practice that is not reasonable and that has, or is likely to have, the effect of disadvantaging people who have a disability relative to people who do not have a disability, or the particular disability concerned.

6.2 For the purposes of this Act, a person (the discriminator) discriminates against another person (the aggrieved person ) on the ground of the aggrieved person being an associate of a person with a disability if the discriminator imposes, or proposes to impose, a condition or requirement or practice that is not reasonable and that has, or is likely to have, the effect of disadvantaging people who are associates of persons with a disability, relative to people who are not associates of persons with a disability or with a particular disability concerned.

Genetic Discrimination in Insurance

Proposal 24-3. No predictive genetic test should be used by insurers in underwriting mutually rated insurance unless the test has been approved for that purpose by the proposed HGCA.
Question 24-3. Would Proposal 24-3 be implemented most effectively through an industry code or legislation? If the latter, should this be through amendment to: (a) the insurance exemption in anti-discrimination legislation; (b) the duty of disclosure in the Insurance Contracts Act 1984 (Cth); or (c) both?

Response:

Government, the public and industry should be able to expect insurance to be properly regulated by insurance law and industry mechanisms in the first instance, with discrimination law providing a safety net or check on these mechanisms if necessary rather than needing to be the first resort on any issue.

My preference is therefore for this proposal to be addressed through insurance legislation and/or an industry code rather than through the DDA.

I am not in a position to offer a view on the need for amendments to the Insurance Contracts Act to implement the Inquiry's proposal 24-3 as against reliance on an industry code alone. However, it can be said that if either an industry code or Insurance Contracts Act provisions are in place then amendments to the DDA would not appear to be also required.

There is scope for an appropriate industry code to be recognized for DDA purposes without legislative amendment through the provision for temporary exemptions to be granted by HREOC.

HREOC would also be able to make appropriate changes to its existing "advisory note" guidance material on insurance to reflect the outcomes of this Inquiry.

Proposal 24-4. The insurance industry, through its peak bodies and in consultation with the proposed HGCA, should develop and publish policies on the use of family medical history for underwriting mutually rated insurance.

Response:

I endorse the approach set out in this proposal. As noted above appropriate policies could be endorsed for DDA purposes through HREOC guidance material and more authoritatively through the temporary exemption process.

Proposal 24-5. The Insurance Contracts Act 1984 (Cth) should be amended to clarify the nature of the obligation of an insurer to provide written reasons for an unfavourable underwriting decision. Where such a decision is based on genetic information, the insurer should give reasons that are clear and meaningful and that explain the actuarial or statistical basis for the decision.

Response:

I agree with this proposal. The capacity of HREOC to require production of information by an insurer (dealt with in proposal 24-6) arises only in the context of a complaint. It is clearly in the interests of all concerned that reasons for unfavourable decisions (whether justifiable or not) be clarified before matters get to the point of a complaint under the DDA.

Proposal 24-6. The Disability Discrimination Act 1992 (Cth) and related legislation should be amended to clarify the nature of the information required to be disclosed by an insurer and to ensure that the complainant is entitled to access to the information so disclosed.

Response:

I agree with this proposal although noting that the relevant provision, DDA section 107, has had limited practical significance in the administration of the DDA to date, and that as indicated above provisions for disclosure of reasons at an earlier stage and not only in the context of a DDA complaint are likely to have greater beneficial effect.

Proposal 24-7. The insurance industry, through its peak bodies, should develop a policy regarding the provision of reasons by an insurer to an applicant in response to an unfavourable underwriting decision based on family medical history. The policy should ensure that the reasons given are clear and meaningful and that they explain the actuarial or statistical basis for the decision.

Response:

As with proposal 24-4 I endorse the approach set out in this proposal. As noted above appropriate policies could be endorsed for DDA purposes through HREOC guidance material and more authoritatively through the temporary exemption process.

Proposal 24-8. The insurance industry, through its peak bodies, should develop appropriate mechanisms for reviewing underwriting decisions involving the use of genetic information. Such reviews should be conducted in a timely and efficient manner; undertaken by a panel of individuals, each of whom is independent of the insurer that made the decision; carried out by suitably qualified individuals with a demonstrated understanding of insurance law and anti-discrimination law, underwriting practice, and clinical genetics; and binding on the insurer but not on the complainant.

Response:

As with proposal 24-4, I endorse the approach set out in this proposal. As noted above appropriate policies could be endorsed for DDA purposes through HREOC guidance material, and potentially more authoritatively through the temporary exemption process.

Proposal 24-9. The insurance industry, through its peak bodies, should review its policies and practices in relation to the training and education of industry members and their authorised representatives in relation to the nature, collection and use of genetic information in insurance.

Response:

I endorse this proposal, noting that HREOC and consumer representative bodies are currently engaged in constructive processes with the Investment and Financial Services Association for similar purposes in relation to the industry's approach to people who have experienced a depressive illness.

Genetic Discrimination in Employment

Proposal 27-1. Employers should be able to collect and use genetic information in relation to their employees only where this is reasonable and relevant within the terms of anti-discrimination and occupational health and safety legislation, and subject to the limitations set out in the proposals in Chapters 28-30.

Response:

I endorse this proposal. Issues in its implementation are discussed by reference to more specific proposals which follow.

Proposal 28-1. In assessing whether an applicant or employee is able to perform the inherent requirements of a job, only current ability to perform the inherent requirements should be relevant. The term 'inherent requirements' in the DDA, the HREOC Act and the Workplace Relations Act 1996 (Cth) should be clarified accordingly. The States and Territories also should consider amending their legislation to similar effect.

Response:

I agree with the objective of this proposal. As indicated by the Inquiry, in most instances legitimate assessments by employers should be concerned with a person's ability to perform job requirements at present rather than with what may happen years into the future. This is consistent with the fact that employment in Australia is a relationship terminable by either party on relatively short notice: we do not have slavery or long term servitudes.

However, some caution is necessary regarding the specific proposal to restrict all consideration to the current ability to perform inherent requirements.

Such an amendment could restrict entitlements, which in HREOC's view presently exist under the DDA, for people to have a reasonable time to comply with job requirements. For example, a person temporarily incapacitated by illness would expect to have a reasonable time to recover fitness for work even though not "currently" able to perform job requirements. A person requiring some initial adjustment period while workplace training is undertaken or assistive technology is made operational could likewise be seen as not "currently" able to perform inherent requirements.

It may be possible as a matter of drafting to make a restriction to current ability to perform job requirements run only against employers and not against employees. There could however be objections to the equity and sustainability of such a position. This includes possible concerns regarding creation of disincentives to employ people with disabilities if the legislation is seen as preventing reasonable "give and take" in terms of rights and responsibilities.

I agree that the number of jobs where it is necessary to assess ability to perform inherent requirements a substantial way into the future is likely to be small (including cases such as the Inquiry has mentioned regarding Antarctic postings, long voyages etc).

Administratively it would appear feasible to deal with this small number of matters through the exemption process. However, as a matter of law and policy HREOC does not favour approaches which depend on the exemption process to make the law accord with a realistic interpretation of what should or should not be defined as discriminatory, rather than having the law as far as possible make sense as written.

There would be some questions as to whether an exemption under the existing power would be properly available in such cases:

  • HREOC and other bodies administering similar powers have thought to date that the temporariness of the exemptions that can be granted means that the need for an exemption should also be temporary (for example while measures to move towards equality are implemented, even if this involves a substantial number of years perhaps requiring successive exemptions) rather than being inherent in the nature of the situation;
  • On administrative law grounds, the power to grant exemptions should only be used where this advances the objects of the legislation, and it is not clear how granting an exemption allowing a person to be simply excluded without some accompanying positive measures would meet this test.

For these reasons some degree of flexibility may be needed rather than an absolute restriction to current ability to perform inherent requirements.

A possible provision could read:

Except where exceptional circumstances can be demonstrated, reference to a person being unable to perform inherent requirements does not include circumstances where a person is currently able to perform those requirements but may become unable to in future. A person is not to be regarded as unable to perform inherent requirements if the inability is temporary and can be remedied within a reasonable period in the circumstances (for example where it is due to illness or where time is required to implement some reasonable adjustment).

A provision such as this would need either to be inserted to accompany each reference to inherent requirements (in sections 15, 16, 17, 18, 19 and 21) or preferably as a single note referring to each of the sections in Division 1.

Proposal 28-2. Peak employer associations should encourage members to produce clearly defined job descriptions that set out the inherent requirements of every position in the workplace.

Response:

I agree that re-examination by employers of the inherent requirements of jobs will often be beneficial, in removing restrictions which may have become outdated with changes in working methods and technology and in focusing on results to be achieved rather than on particular methods for achieving those results which might unnecessarily exclude people with disabilities.

Further encouragement in this process from peak industry bodies would be welcome accordingly.

However, it should be noted that the objective of achieving job descriptions setting out the inherent requirements of every position may be unduly ambitious.

HREOC's website Frequently Asked Questions material on employment notes that

"the DDA does not require employers to have written duty statements and where a duty statement does exist it will not necessarily be conclusive. A requirement contained in a duty statement might not be found to be an inherent requirement. The Commission and the courts have emphasised that a requirement is not inherent simply because it is stipulated in a duty statement or contract of employment. Equally, a requirement might not appear on a duty statement but still be found to be an inherent requirement."

Proposal 28-3. The DDA should be amended to prohibit an employer from requesting or requiring genetic information from a job applicant or employee unless the employer can demonstrate that the information is necessary for a purpose that does not involve unlawful discrimination, such as ensuring that a person is able to perform the inherent requirements of the job. The States and Territories should consider adopting a similar provision in their anti-discrimination legislation, where one does not already exist.

Response:

I support this proposal. HREOC's concern that discussion of disability issues in order to resolve employer concerns or to identify necessary adjustments has been noted by the Inquiry, and in my view appropriately taken into account by this proposal. This proposal in fact offers an opportunity to clarify the position regarding requests for disability related information more generally which in my view would be helpful to all concerned.
The current effect of the DDA is summarized as follows in HREOC's website FAQ material:

"The D.D.A. does not set out particular forms of words as permitted or prohibited. Rather, the lawfulness of inquiries or examinations under the D.D.A. 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."

A provision in accordance with proposal 28-3 would thus in my view confirm and clarify the existing effect of the DDA rather than imposing any new restrictions on employers.

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.

I agree with the Inquiry's assessment regarding the proposed replacement for the existing s.27(1) of the Sex Discrimination Act in the Sex Discrimination Amendment (Pregnancy and Work) Bill 2002 (Cth) as a model for possible amendments to the DDA. That is, although the language is clearer than the existing provision, coverage of questions asked of all applicants or employees is still open to question.

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.

Proposal 28-4. HREOC should, in consultation with the proposed HGCA and other relevant stakeholders, develop Disability Standards dealing with the collection and use of genetic information in employment. As an interim measure, HREOC should issue guidelines in this area.

Response:

I consider that Disability Standards regarding collection and use of medical information, either generally and including genetic information, or specifically regarding genetic information but as a possible model for dealing with medical information more generally, could be useful.

A decision to proceed with development of standards is, of course, a matter for the Attorney-General. This decision could be expected to be influenced by whether support for such an initiative is forthcoming from representatives of employers, people with disabilities and other relevant parties.

HREOC would similarly consider the possibility of developing guidelines having regard to the Inquiry's final recommendations and the views of relevant parties.

It should be noted that one possible model for standards (and for guidelines) specifically in relation to genetic information could be to give effect for discrimination law purposes to the code proposed to be developed by the National Occupational Health and Safety Commission pursuant to proposals 29-2, 29-4 and 29-6.