Evidence of genetic discrimination in Australia

30.22 Discrimination in employment on the basis of genetic status does not appear to be widespread in Australia at present. Surveys to date have found only a small number of cases in which individuals believe they have been the subject of such discrimination. It is unclear whether the acts in question would have amounted to unlawful discrimination. The submissions received by the Inquiry did not provide evidence of widespread misuse of genetic information by employers.

30.23 To date, HREOC has received only three complaints involving genetic status. Two were in the employment context and one of these did not proceed because it fell within one of the DDA exceptions. The one remaining employment case is described below. It is possible that the number of complaints received by HREOC is not an accurate reflection of the size of the problem in the workplace. Complaints of discrimination are not always raised with HREOC because individuals may not be aware of their rights or may be fearful that lodging a complaint will lead to victimisation.

30.24 A 2001 study of genetic discrimination in Australia by Dr Kristine Barlow-Stewart and David Keays identified two cases in which job applicants were required to undertake genetic testing as part of the employment selection process. They also identified three cases of alleged discrimination by employers against asymptomatic employees.^[13] These cases, discussed further below, indicate that discrimination can arise from the use of genetic test results or family medical history, and at different stages of the employment process. There remains considerable uncertainty about the extent of discrimination in this area. Empirical research being undertaken by the Genetic Discrimination Project Team into the nature and extent of genetic discrimination in Australia may provide a more complete picture of the use of genetic information in the workplace (see Chapter 29).

Job applicants

30.25 The one complaint raised with HREOC in the employment context, which did not fall within the DDA exceptions, involved an applicant for a position as a psychologist with a public employer. The interview process for the position included aptitude tests, a medical examination and an interview with a psychologist. As part of the tests, the applicant told her employer that she had experienced enuresis (bed-wetting) until the age of fourteen, when the condition had ceased. The employer refused to employ her on the basis that enuresis beyond ten years of age was indicative of psychological problems in adult life.

30.26 In response, the applicant produced evidence that there was a history of ‘primary nocturnal enuresis’ in her family. She claimed that she had inherited the disorder and that, since it was inherited, it was not indicative of any psychological disturbance. The complaint was terminated because there was no reasonable prospect of it being conciliated.^[14]

30.27 The Barlow-Stewart and Keays survey identified two further cases involving the use of genetic information by employers in the selection process. In one case a young woman reported that when she applied for a position with the public service she was told the success of her application depended on a negative genetic test result for familial adenomatous polyposis. The employer knew she was at risk of the disease because she was undergoing regular colonoscopies for early signs of bowel cancer. When her genetic test result was positive she did not continue with her job application.

30.28 In the second case, a young man who applied for a position in the armed forces reported that he was required to provide evidence that he did not have the genetic mutation for a connective tissue disorder called Marfan syndrome, of which he had a family history. As he had participated in medical research overseas he was able to produce documentation indicating that he had not inherited the mutated gene. He was subsequently accepted for the position.^[15]

30.29 Another documented case involved an individual with a family history of Huntington’s disease who was initially rejected for a position with the public service. The man was informed that he would only be employed if he could provide evidence that he did not have the relevant genetic mutation. Following a written appeal to senior management this decision was reversed.^[16]

Employees

30.30 The Barlow-Stewart and Keays survey identified three cases of alleged discrimination on the basis of genetic status by employers against existing employees. These cases involved individuals with positive genetic tests for familial early-onset Alzheimer’s disease or Huntington’s disease. In one case, the person’s employment was terminated. In the two other cases the employee was demoted after the employer became aware of the genetic test results.^[17]