Draft Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities

24 November 2005: ALRC submission on Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (24 November 2005)

The Australian Law Reform Commission (ALRC) notes that the Convention currently prohibits discrimination on the basis of disability.[1] ‘Discrimination on the basis of disability’ 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 a basis of equality 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 direct and indirect discrimination.

While this is a broad definition, the ALRC’s considered view is that it would be preferable for the definition expressly to discrimination on the basis of a person’s real or perceived genetic status. This arises out of the ALRC’s findings and recommendations in our recent national inquiry into the protection of human genetic information.

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.[2]

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 and to respect their uniqueness and diversity.

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 the Australian Health Ethics Committee (AHEC)—a principal committee of the National Health and Medical Research Council (NHMRC)—were asked to consider the adequacy of the existing mechanisms under Australia 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). The Inquiry was the most comprehensive ever undertaken into these issues in Australia or overseas. One of the core purposes of the Inquiry, as specified in the Terms of Reference, was to report on whether a regulatory framework is needed to provide protection from inappropriate discriminatory use of human genetic samples and information.

In 2003, the ALRC and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC) completed the Inquiry with the publication of the report Essentially Yours: Protection of Human Genetic Information in Australia (ALRC 96).[3] The two-volume, 1200 page report makes 144 recommendations about what Australia must do to deal with the ethical, legal and social implications of the ‘New Genetics’.

Key recommendations include:

  • 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.

Genetic information

One of the central concerns for the Inquiry was whether genetic information is so fundamentally different from other forms of personal health information that it requires special regimes to regulate its collection, use and disclosure. Three aspects of genetic information call for special comment:

  • Genetic information is ubiquitous. Information about a person’s identity and genetic status readily can be obtained from the analysis of tiny bits of genetic material, such as is found in blood, saliva or cells attached to human hair.
  • Genetic information is inherently familial. While each person’s genetic code is unique, genetic information also has a powerful familial element—therefore, it can reveal information about, and have implications for, that person’s genetic relatives, including those in preceding and succeeding generations. Sometimes these implications may even extend beyond the family to larger groups of closely-linked people with common ancestry, for example, indigenous, ethnic or ethno-religious communities.
  • Genetic information may have powerful predictive force, but is highly complexand contingent. The Inquiry found that there is no community consensus about access to and use of predictive genetic information by family members and people or organisations outside the family. The worst result for Australians would be to allow genetic information to be used in a manner which stereotypes people about their future ability to function and the degree of probability that disease will occur, rather than relying on evidence of actual disease and measurable ability. This would risk the creation of a new ‘genetic underclass’ of people who actually are fit and able, but are locked out of securing insurance, employment or access to other goods, services and entitlements because of the possibility (however remote) that a genetic condition might manifest at a later time.[4]

Discrimination on the basis of genetic status

Many submissions received by the Inquiry included statements about the undesirable effects of inappropriate and discriminatory use of genetic information.[5] 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.

For example, the Commonwealth Department of Health and Ageing submitted that:

To some degree, such discrimination appears to be due to a significant overestimation of the reliability and predictive capacity of genetic information and to limited knowledge about the interaction between genetic and other environmental factors. These issues need to be actively addressed.[6]

Chapter 26 of Essentially Yours deals with discrimination on the basis of genetic status in the context of risk-rated insurance products (life insurance, income protection, etc). A number of studies and submissions to the Inquiry reported allegations of genetic discrimination in insurance,[7] although it was often impossible to ascertain whether the behaviour complained about amounted to unlawful discrimination or simply unhappiness with treatment or outcome.[8] The ALRC made a number of recommendations aimed at providing a much greater level of information and consumer protection in this area, and also recommended that the proposed HGCA should maintain a watching brief on this matter in case further intervention is required.

In respect of employment, the Australian Council of Trade Unions (ACTU) submitted that:

If genetic testing was allowed, it is certain that it would be misused. First, it would be used to screen out employees who might have only a slightly higher predisposition to acquire a condition than the general population. Many employers would not distinguish between a predisposition and a certainty, while the possibility of false negatives and positives would not necessarily be taken into account.[9]

From the information provided to the Inquiry it appeared that the use of genetic information in the Australian workplace is not yet widespread. However, there are some incentives to use such information (eg, to reduced workers compensation premiums and sick leave), complaints about employer behaviour and discrimination in this area already have emerged in the United States, Germany and elsewhere, and it may be expected that the prevalence of related workplace issues will grow in Australia in the coming years as genetic testing becomes cheaper and its use as a medical diagnostic tool becomes commonplace. 

To counter discrimination in the workplace the Inquiry made a range of recommendations for amendments to anti-discrimination legislation. In particular, the ALRC recommended in Chapter 31 that the Disability Discrimination Act 1992 (Cth) be 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.

Because of the familial nature of genetic information, it is also conceivable that individuals could be discriminated against in employment on the basis of information held or known about their genetic relatives. For example, a company might refuse to employ an applicant because of a family history of Huntington’s disease, without any evidence that the particular person has the genetic markers for the disease. (In the anti-discrimination context, this may be characterised either as an act on the basis of the applicant’s ‘association’ with others; or (b) an act on the basis of an ‘imputed’ disability.)

Anti-discrimination laws in Australia generally recognise that it is unlawful to discriminate against a person on the basis of his or her association with another person.[10] Again, however, it is the ALRC’s preferred position that matters relating to genetic discrimination be dealt with explicitly—and, above all, the a sensible platform of legal and social policy in this area be laid down now, well in advance of any significant outbreaks of bad practice. 

Disability Discrimination and Genetic Status

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 legislation.[11]

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 should 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.[12] 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.[13]

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 ‘Whole-of-Government’ response is currently being prepared to those recommendations which require direct action or leadership by the Australian Government. However, 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.[14]  Finally, in the May 2005 Budget, provision was made for the establishment of a Human Genetics Committee of Australia (as another principal committee of the NHMRC), with funding of $7.6M over the next four years—implementing the central reccommendation in Essentially Yours

[1]               The ALRC notes the Chairman’s comments that it is unnecessary to define ‘disability’ and ‘person with disabilities’ in the Convention.

[2]               Universal Declaration on the Human Genome and Human Rights, UNESCO, <http://portal.unesco.org/shs/en/ev.php-URL_ID=2228&URL_DO=DO_TOPIC&URL_SECTION=201.html>, 19 February 2003 .

[3]               This report is available online at <www.austlii.edu.au/au/other/alrc/publications/reports/96/>.

[4]               ALRC 96, [3.36].

[5]               ALRC 96, [9.2]–[9.3].

[6]               Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[7]               ALRC 96, [26.20]–[26.33].

[8]               The federally (ARC) funded Genetic Discrimination Project, headed by Prof Margaret Otlowski, Dr Kristine Barlow-Stewart, Dr Sandy Taylor and Dr Susan Treloar, is seeking to provide much more detail in this regard, with significant cooperation from the peak insurance body, the Investments and Financial Services Association (IFSA). The final report is due later this year.  See <http://www.gdproject.org/contact/index.php>.

[9]               Australian Council of Trade Unions, Submission G037, 14 January 2002.

[10]             See discussion in ALRC 96, Ch 9.

[11]             Rec 9–1.

[12]             Rec 9–2.

[13]             Rec 9–3.

[14]             Productivity Commission, Review of the Disability Discrimination Act (Report No 30, 1994) (Vol 1), Ch 11.