The use of legal remedies in Australia for pursuing allegations of genetic discrimination : findings of an empirical study

Differential treatment on the basis of genetic status (genetic discrimination), has become an issue of international concern. The Genetic Discrimination Project (GDP) is an Australia-wide study which has empirically examined the non-medical/health advantages and disadvantages for individuals who have gained specific information about their genetic status (typically through genetic testing). A major component of this project has been the Legal System Study which investigated and documented all cases involving allegations of genetic discrimination coming before anti-discrimination tribunals and other relevant bodies in Australia. Another major component of the project, the Consumer Study, investigated allegations of genetic discrimination from consumers of genetic tests. While the study identified a relatively small number of cases where allegations of genetic discrimination have been pursued under Australian anti-discrimination legislation, a key finding was the notable lack of uptake of legal remedies by those who may have experienced such discrimination. This paper explores possible factors contributing to this lack of uptake and makes recommendations to facilitate access to legal remedies by those who may have been subject to unlawful genetic discrimination.