Options for reform

30.34 A number of overseas jurisdictions have moved to regulate the use of genetic information in employment. Some jurisdictions have imposed complete prohibitions on the use of genetic test information in that context; others have implemented partial prohibitions, allowing specified exceptions for the protection of employee or third party safety. These developments are discussed below.

Prohibition on the use of genetic information

30.35 Austria, France and Norway have imposed prohibitions on the use of certain types of genetic information in employment.^[21] These prohibitions focus on the use of genetic test results rather than family medical history. In Norway, for example, employers are prohibited from requesting, receiving, possessing or using information resulting from a genetic test. It is also prohibited to ask whether a test has been carried out previously.^[22]

30.36 A number of United States jurisdictions have also prohibited the use of genetic information in employment. By April 2002, 31 States had enacted legislation on genetic information in employment, although the provisions in each State vary considerably and not all States impose an absolute ban.^[23] Some jurisdictions prohibit employers’ collection and use of genetic information as well as discrimination on the basis of that information. Other jurisdictions prohibit discrimination only. In addition, a number of federal bills on the subject have been introduced into Congress.^[24]

30.37 Jurisdictions also vary as to the scope of the information protected. Some older legislation focuses on particular genetic traits (for example, the sickle cell trait), while more recent legislation focuses on genetic test results, or test results and family medical history.

Prohibition subject to exceptions

30.38 Some jurisdictions have prohibited the use of genetic information in employment, subject to specified exceptions. The Netherlands, Denmark, Israel and several United States jurisdictions have adopted this approach.^[25] The models adopted by different jurisdictions vary in a number of respects, including the scope of the genetic information covered and the scope of the permitted exceptions. Exceptions generally involve use for occupational health and safety reasons, including screening for workplace related susceptibilities or for conditions involving risk to the safety of third parties.

30.39 The United Kingdom is yet to implement legislation in this area but several advisory bodies have supported this approach.^[26] The 2002 Report of the Human Genetics Commission recommended that employers should not require individuals to undertake genetic testing as a condition of employment but that the situation should be kept under review, particularly in relation to occupational health and safety issues.^[27]

Permission subject to exceptions

30.40 The existing Australian regulatory framework, described above, allows employers to collect and use job applicants’ and employees’ genetic information subject to the limits imposed by anti-discrimination legislation, occupational health and safety legislation, and privacy legislation. Employers are permitted to collect and use genetic information unless, for example, the information is used to discriminate unlawfully against a job applicant or employee. This is also the case in a number of other jurisdictions, such as the United Kingdom.

30.41 In DP 66 the Inquiry proposed that the status quo be maintained, subject to a number of proposals aimed at improving the protection offered by the anti-discrimination, occupational health and safety, and privacy regimes.^[28]