Abstract for presentation at 11th International Congress of Human Genetics

Genetic discrimination in Australia: Third party perspectives

  • Prof Margaret Otlowski, Centre for Law and Genetics, Faculty of Law, University of Tasmania, Australia
  • Dr Kristine Barlow-Stewart, Centre for Genetics Education, Royal North Shore Hospital, Sydney, Australia
  • Dr Mark Stranger, Centre for Law and Genetics, Faculty of Law, University of Tasmania, Australia
  • Dr Susan Treloar, Queenslans Institute of Medical Research, Australia
  • A/Prof Sandy Taylor, School of Social Work and Welfare Studies, Central Queensland University, Australia

    • This paper presents final results from the third party component of the Genetic Discrimination Project (GDP) which has investigated genetic discrimination within the Australian life insurance and employment sectors. Firstly, findings are presented from the GDP’s independent analysis of data commissioned by the peak life insurance body IFSA and collated by the Institute of Actuaries of Australia; these data involve underwriting in all reported life insurance applications involving disclosure of genetic test results for the period 1999-2003. Of 288 cases where genetic test results were disclosed, 81% (234/288) contained usable data for analysis; these cases included the genetic conditions haemochromatosis (71%), HD (12%) and breast/ovarian cancer(6%). In 49% of cases, the genetic test result was described as the only influencing factor and of these, 32% involved a ‘positive’ result. Whilst underwriting in most cases appeared to be reasonable, the paper highlights several cases involving disclosure of a positive predictive genetic test result for breast and ovarian cancer that required further investigation. Secondly, the paper presents survey findings of attitudes and practices of Australian employers and occupational medicine practitioners regarding the use of genetic testing in the workplace. Of a valid sample of 1,065 employers, there were 381 respondents (36%). Whilst 6.6% of employers reported requesting family history information when screening potential employees, none reported asking for genetic tests to be undertaken or past genetic tests results to be provided. Data are also presented regarding employer attitudes to the future use of genetic testing in the workplace. Employer survey results were corroborated by data from occupational medicine practitioners. Significantly, both groups expressed concern about the ethical use of genetic testing in the workplace. The limitations of this research and implications for current Australian policy will be outlined.

    Conference Organiser - ICMS Pty Ltd