28 February 2008: ALRC submission in relation to the possible ratification of the United Nations Convention on the Rights of Persons with Disabilities.
Thank you for the opportunity to take part in the consulation process regarding possible ratification of the United Nations Convention on the Rights of Persons with Disabilities. The Australian Law Reform Commission (ALRC) has comments relating to the definition of ‘discrimination’, and in particular what needs to be done to implement the Convention.
The ALRC notes that the Convention prohibits ‘discrimination on the basis of disability’, which is defined in Article 2 of the Convention to mean:
any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.
The definition does not expressly include discrimination on the basis of a person’s real or perceived genetic status. ‘Disability’ is not defined in the Convention. It is the ALRC’s considered view, however, that disability would be given a broad interpretation at the international level and would likely encompass genetic status.
Australia’s anti-discrimination laws at present do not specifically refer to discrimination on the basis of a person’s real or perceived genetic status. The ALRC, together with the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC), has recommended that discrimination of the basis of genetic status expressly should be incorporated into anti-discrimination laws in order to make clear the scope of those laws, and to assist to highlight issues around genetic status. The Australian Government has accepted those recommendations. The ALRC considers it would be timely to make the recommended amendments prior to ratification of the Convention on the Rights of Persons with Disabilities.
The ALRC–AHEC Inquiry into the Protection of Human Genetic Information
The international community has turned its attention in recent years to the matter of discrimination on the basis of genetic status, driven in large part by the rapid advances in genetic science and technology. The UNESCO Universal Declaration on the Human Genome and Human Rights 1997 recognises that:
research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole, but … that such research should fully respect human dignity, freedom and human rights, as well as the prohibition of all forms of discrimination based on genetic characteristics.
The Declaration is not a binding legal instrument, but it is evidence of growing international concern and an indication of the general approach of the international community in this area. Article 2 of the Declaration states that:
Everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics. That dignity makes it imperative not to reduce individuals to their genetic characteristics.
Article 6 goes on to declare that:
No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.
The Council of Europe’s Convention on Human Rights and Biomedicine (which is binding on parties) gives a clear indication of the approach adopted in Europe in relation to this issue. Article 11 states that:
Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited.
It was against this background that the ALRC and AHEC were asked to consider the adequacy of the existing mechanisms under Australian law for protecting genetic privacy and non-discrimination, and maintaining the highest ethical standards.
The Inquiry commenced under Terms of Reference in February 2001, and culminated in the tabling in federal Parliament in May 2003 of the report Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC 96). This ground breaking Inquiry remains the most comprehensive ever undertaken into these issues in Australia or overseas, and has been internationally influential. The two-volume, 1,200 page report makes 144 recommendations about what Australia must do to deal with the ethical, legal and social implications of the ‘New Genetics’.
The Terms of Reference asked the ALRC and AHEC to consider, with respect to human genetic information (and the tissue samples from which such information may be derived), how best to: (a) protect privacy; (b) protect against unfair discrimination; and (c) ensure the maintenance of the highest ethical standards. These three key concerns were explored across a wide and growing variety of contexts, including: oversight of genetic research; delivery of and access to clinical genetic services; tissue banks, genetic registers and human genetic research databases (‘biobanks’); employment; insurance; immigration; sports; identity (kinship and paternity) testing; and law enforcement.
Key recommendations included:
- the establishment of a standing Human Genetics Commission of Australia (HGCA) to provide high-level, technical and strategic advice about current and emerging issues in human genetics, as well as providing a consultative mechanism for the development of policy statements and national guidelines in this area; and
- the amendment of Commonwealth anti-discrimination laws (and state and territory counterparts) expressly to prohibit discrimination based on a person’s real or perceived genetic status.
Discrimination on the basis of genetic status
Many submissions received by the Inquiry included statements about the undesirable effects—direct and indirect—of inappropriate and discriminatory use of genetic information. The Inquiry was told that instances of discrimination based on an individual’s genetic information already had occurred—mainly in the context of insurance underwriting, but also in decisions about employment—and would grow in number as genetic testing became more prevalent.
The Inquiry’s primary recommendations in relation to discrimination on the basis of genetic status appear in Chapter 9 of Essentially Yours. The Inquiry recommended that discrimination on the grounds of genetic status should be dealt with under existing Australian anti-discrimination legislation, not the subject of ‘stand alone’ legislation.
The Inquiry noted that the most relevant piece of federal legislation is the Disability Discrimination Act 1992 (Cth) (DDA). The Inquiry was concerned that although the DDA would cover genetic conditions that are manifested by current symptoms or that may cause a disability in the future, the definition of ‘disability’ in the DDA may not be broad enough to include genetic status where a person is currently asymptomatic.
The Inquiry recommended that the objects clause of that legislation be amended to indicate that it applies to discrimination on the basis of past, present, possible future or imputed disabilities, including discrimination on the ground of genetic status. It was the Inquiry’s view that a statement of this kind would 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.
The Inquiry also recommended that, in order to provide a consistent approach to addressing discrimination on the basis of genetic status, the Commonwealth, in consultation with the HGCA and other stakeholders, should:
- amend the definitions of ‘disability’ in the DDA and ‘impairment’ in the regulations made under the Human Rights and Equal Opportunity Commission Act 1986 (Cth) (HREOC Act) to clarify that the legislation applies to discrimination based on genetic status;
- amend the definition of ‘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; and
- define ‘disability’ in the Workplace Relations Act 1996 (Cth) by reference to the amended definition of ‘disability’ in the DDA.
The Inquiry considered that there is value in providing greater certainty and raising awareness in relation to the issue of genetic discrimination. The Inquiry commented that 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 report concluded 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.
A number of other recommendations were made to reduce the risk of active discrimination in key areas, such as in contracts for life insurance and income protection, and in the workplace. In particular, the ALRC recommended that the DDAbe amended to make it clear that an employer is prohibited from requesting or requiring genetic information from a job applicant or employee unless the information is reasonably required 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 successful implementation of these recommendations would be supported by anti-discrimination legislation that specifically recognises discrimination on the basis of genetic status.
Support for amendment of legislation
The Productivity Commission completed a review of the DDA in July 2004, and supported the ALRC’s Recommendation 9-3 from Essentially Yours, calling for the definition of ‘disability’ in the DDA to be amended to clarify that the legislation applies to discrimination based on genetic status.
In December 2005, the Australian Government released a ‘Whole-of-Government’ response to the Essentially Yours Report, supporting most of the recommendations made by the ALRC and AHEC. When dealing with overlapping issues, the Response was consistent with the earlier government response to the Productivity Commission’s review of the DDA.
The Australian Government agreed to:
- clarify the scope of the definition of disability to make it clear that it includes genetic predisposition to a disability, by adding an advisory note into the DDA;
- clarify the definition of ‘impairment’ in the HREOC regulations to ensure that impairment includes a disability that may exist in the future, by adding an advisory note; and
- amend the definition of ‘impairment’ in the HREOC regulations to ensure that impairment includes discrimination on the basis of association with a person who has an impairment or disability.
The Response did not support an amendment to the objects clause of the DDA, considering it unnecessary, and did not agree to amend the Workplace Relations Act to define disability with reference to the DDA, indicating that this would be inconsistent with the structure of the Workplace Relations Act.
The Essentially Yours Report also recommended that the States and Territories should consider harmonising their anti-discrimination legislation, and other relevant laws, in a manner consistent with the recommendations in the Report. The Australian Government indicated that this was a matter for the States and Territories, but stated it had drawn the issue to their attention.
Time for amendment of legislation
Many of the recommendations in Essentially Yours have been implemented. A Human Genetics Advisory Committee (HGAC) has been established as a principal committee of the NHMRC, and is providing on-going advice on high-level technical and strategic issues in human genetics, and on the social, ethical and legal implications of human genetics and related technologies. The Privacy Act 1988 (Cth) was amended in 2006 to ensure that definitions of ‘health information’ and ‘sensitive information’ expressly refer to genetic information and to permit disclosure of genetic information by health professionals to the genetic relatives of the patient in certain circumstances. The Family Law Regulations 2004 enhanced the identification requirements for parentage testing procedures. An overview of other recommendations that have been implemented can be found on the ALRC website.
It is understood that a Bill to make the relevant amendments to the DDA and HREOC regulations was to be drafted for introduction to the Parliament in late 2007.
The ALRC considers it would be timely for the implementation of the recommendations in relation to the definition of disability and genetic status, and to give further encouragement to the States and Territories to implement similar amendments to their anti-discrimination legislation. This will ensure that Australian anti-discrimination gives adequate coverage to discrimination on the basis of genetic status and be consistent with the Convention of the Rights of Persons with Disabilities.
 Australian Law Reform Commission and Australian Health Ethics Committee, Essentially Yours: The Protection of Human Genetic Information in Australia, ALRC 96 (2003), Ch 9.
 Australian Government, Australian Law Reform Commission and Australian Health Ethics Committee Report Essentially Yours: The Protection of Human Genetic Information in Australia: Government Response to Recommendations (2005). The text of the Response is available from <www.alrc.gov.au/inquiries/title/alrc96/agd.htm>.
 UNESCO, Universal Declaration on the Human Genome and Human Rights, 19 February 2003, <www.unesco.org/ibc/en/genome/projet/>.
 This report is available online at <www.austlii.edu.au/au/other/alrc/publications/reports/96/>.
 Australian Law Reform Commission and Australian Health Ethics Committee, Essentially Yours: The Protection of Human Genetic Information, ALRC 96 (2003), [9.2]–[9.3].
 ALRC 96, Rec 9–1.
 ALRC 96, Rec 9–2.
 ALRC 96, Rec 9–3
 ALRC 96, Rec 9–4.
 ALRC 96, Rec 9–3
 ALRC 96, Rec 31–3
 Productivity Commission, Review of the Disability Discrimination Act, Report No 30 (1994), Ch 11.
 ALRC 96, Rec 9–5.
 See ALRC 96, Recs 7–4, 7–5, 21–1, 22–2.
[15 See ALRC 96, Rec 35–6.