Genetic testing and Australia's anti-discrimination laws

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Genetic testing and Australia's anti-discrimination laws

The Australian Law Reform Commission (ALRC) has raised as an issue for discussion the effectiveness of current anti-discrimination laws, privacy and other workplace laws to protect workers from discrimination or disadvantage based on genetic make-up or predisposition to disease.

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The Australian Law Reform Commission (ALRC) has raised as an issue for discussion the effectiveness of current anti-discrimination laws, privacy and other workplace laws to protect workers from discrimination or disadvantage based on genetic make-up or predisposition to disease.

In a recently released discussion paper entitled 'Protection of Human Genetic Information', the ALRC highlighted potential concerns about the use of human genetic information in a range of areas, including employment.

The ALRC and the Australian Health Ethics Committee have been asked by the federal government to consider what sort of regulation might be needed in relation to human genetic samples and information to protect privacy, provide protection from discrimination, and ensure standards of ethical conduct. The ALRC is seeking public comment on the issues raised in the discussion paper.

Use of genetic information in the workplace

The ALRC noted the increasing use by employers of medical and psychological testing in Australian workplaces, as well as mandatory drug testing. Advancements in gene technology may mean that employers will seek to use genetic testing as a means of selecting new employees or monitoring the health of current employees. In particular, genetic testing could be used for the purposes of identifying job applicants or employees:

  • whose genetic make-up creates a risk to themselves or to others - for example, an air-line pilot or bus driver who has a genetic predisposition to heart attack;
  • who have an increased susceptibility to occupational disease - for example, where a person has a gene or genes that increase the likelihood that he or she will develop a disorder as a result of the workplace environment;
  • who are likely to experience long periods of absence from work as a result of their genetic conditions; or
  • who have suffered damage to their genetic material during the course of their employment as a result of exposure to a toxic substance or its by-products.
  •  While genetic testing in the employment context appears at this stage to be uncommon, the ALRC cited an Australian study conducted in 1999 by Barlow-Stewart and David Keays which reported three cases of alleged genetic discrimination in employment (one termination of employment and two demotions based on a genetic predisposition to late-onset neurological conditions in otherwise healthy applicants) and a further two cases in which job applicants were required to undertake genetic testing as part of the selection process

    Reliability of genetic testing
  • The ALRC raised a number of potential concerns with respect to the interpretation of genetic test results by employers. First, the test results must be accurate and reliable. Second, employers or their medical consultants must interpret them properly. Third, if they are to be used in deciding whether to employ or dismiss an individual, the results must be relevant to an employee's ability to perform in a particular position.

    Genetic testing is not always correct. The ALRC pointed out that a test may give false results for a number of reasons, such as degradation or contamination of the sample, improper laboratory handling procedures, or misinterpretation of the test results by the analysts.

    Further, an employer's lack of knowledge may lead it to misinterpret the true nature of genetic test results and make an employment decision based on an incorrect assessment of an individual's state of health. For example, although genetic tests may only predict the probability of a disease, there is a concern that employers will use the results to assume that the employee has or will develop the disease.

    The ALRC raised as an issue for further discussion whether measures should be put in place to establish the reliability, accuracy and proper interpretation of any genetic testing before making decisions based on that information.

    Anti-discrimination laws

    In relation to the issue of unlawful discrimination in the workplace, the ALRC referred to a number of grounds covered by anti-discrimination laws which are relevant to genetic testing and which could be used as the basis of a discrimination complaint.

    Disability

    - This is the most relevant ground, however, its application is not certain in circumstances where genetic information is used for predictive purposes. It is notable, however, that the federal Disability Discrimination Act (DDA) includes in paragraph (j) of the definition of 'disability' a 'disability that may exist in the future'.

    It is likely that genetic abnormalities will be covered by the definition of 'disability' in the DDA, which is expressed very widely. For example, where a person has a genetic predisposition to a particular mental illness, this may be covered by paragraph (g) of the definition, which covers 'a disorder, illness or disease that affects a person's thought processes, perception of reality, emotions or judgment or that results in disturbed behaviour', as well as paragraph (j), which covers future disability. Similarly, predisposition to heart disease may be covered by paragraph (e) of the definition of disability, which covers 'the malfunction, malformation or disfigurement of a part of the person's body', as well as paragraph (j).

    The Human Rights and Equal Opportunity Commission has expressed the view that the use of genetic test results to discriminate against employees or applicants would be unlawful under the DDA because this would amount to discrimination on the basis of an actual disability, or a propensity to a disability. The issue would then be whether one of the exceptions in the DDA apply.

    Race

    - Some conditions, such as sickle cell anaemia, are known to be more prevalent in some races, so discrimination on this basis may amount to direct disability discrimination and indirect racial discrimination.

    Sex

    - Where discrimination is based on the presence of a genetic marker indicating a predisposition to breast cancer, the issue may become one of sex discrimination, for example, breast cancer is much more prevalent in women then men.

    Irrelevant medical record

    - This is a ground of discrimination under the Human Rights and Equal Opportunity Commission Regulations and in Tasmania and the Northern Territory. What is or is not considered 'irrelevant' with respect to genetic information is likely to be problematic.

    Requesting information

    - Under the DDA and laws in Queensland, Victoria, the ACT and NT, it is unlawful to make requests for information on which discrimination might be based. Most of the other jurisdictions look at the decision making process or the decision itself to determine whether there has been unlawful discrimination. While there may nonetheless be an implied prohibition on the asking of such questions, this is not entirely clear.

    Exceptions

    In relation to recruitment and termination of employment, an exception applies under the DDA to circumstances where a person because of his or her disability:

    1. would be unable to carry out the inherent requirements of the job; or
    2. would in order to carry out those requirements, require services or facilities that are not required by persons without the disability and the provision of which would impose an unjustifiable hardship on the employer.

    It is likely that the 'inherent requirements of the job' exception will be relied upon by employers to defend allegations of discrimination based on genetic information about a job applicant or employee.

    The ALRC said that in circumstances where an individual suffers from a genetic disease, or has a predisposition to a genetic disease with a sudden and unpredictable onset - and the disease would pose a threat to the safety of the employee or others in the workplace - the employee may be considered unable to fulfil the inherent requirements of the position. Although these circumstances would be very rare, they could result in the exclusion of some asymptomatic individuals from the protection of the DDA. The remaining question is whether an individual who is currently able to perform these inherent requirements may lawfully be considered to do so on the basis of a future inability to do so. The LRC asked whether it is legitimate for an employer to assess an individual's ability to comply with the inherent requirements over the whole period of employment.

    Occupational health and safety

    Another exception that may apply with respect to discrimination based on genetic testing is in relation to compliance with another Act. This exception is not available the under DDA, but does apply in NSW and other states. So, for example, the employer may argue that discrimination against an employee with a genetic abnormality is necessary to comply with the Occupational Health and Safety Act. This exception has traditionally been very difficult for employers to argue successfully.

    The ALRC pointed out the competing requirements between OHS and discrimination laws. On the one hand, employers may incur legal liability if they allow a person who has a particular sensitivity to some harm (eg, a genetic predisposition to susceptibility to dust diseases) to work for them and through that exposure the person contracts a disease or aggravates his or her medical condition. On the other hand, employers also may incur a legal liability for unlawful discrimination based on disability if they refuse that same person the job, or move them to other duties that are less well remunerated or offer lower prospects of career advancement.

    Balancing OHS and equal opportunity requirements is a task that many employers already have considerable difficulty managing. The availability of genetic information is likely to add considerably to the difficulty and complexity of this task.

    Privacy

    The ALRC pointed out that the Commonwealth Privacy Act which will shortly apply to private sector employment will have a broad reaching exception relating to 'employee records'. This means that the National Privacy Principles (NPPs) which regulate the use, storage and disclosure of personal information will not apply to records relating to current or former employees of an organisation. The ALRC raised the possibility of medical records relating to employees being exempt from the protection of the NPPS to the extent that they are held in an employee record by the individual's current or former employer. The ALRC questioned whether private sector employees are adequately protected in light of the 'employee records' exemption.

    Public interest issues

    A number of public interest issues were also highlighted in the Discussion Paper. These included:

    • Does an individual have the right 'not to know' that he or she has a genetic condition? This right is all the more important in relation to conditions for which there is no cure.
    • If there is a legal duty to disclose the results of a genetic test to an employer, will this deter the individual from undergoing the test in the first place?
    • Will a 'genetic underclass' develop as a result of genetic testing of workers? This is a class of people who are asymptomatic but have tested positive to susceptibility to disease. While they may be capable of working, they may be routinely excluded from any form of meaningful work on the basis that they may in future be unfit to perform certain work activities. The public policy issues include whether it is acceptable to the Australian community to allow such discrimination in employment, and whether the social welfare system can support a new class of individuals who are unable to support themselves financially.

    Are new laws needed?

    The ALRC raised for discussion the issue of whether the various anti-discrimination laws and other workplace laws adequately protect against unlawful discrimination on the basis of genetic status, and asked whether there is a need to amend the laws to clarify their application to genetic information. Alternatively, the ALRC asked whether it would be better to enact legislation dealing specifically with genetic discrimination.

    The discussion paper and instructions on how to make a submission to the ALRC can be found on the ALRC's website: http://www.alrc.gov.au/ 

 

 
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