Abstract for presentation at 11th International Congress of Human Genetics

Genetic discrimination in Australia: The consumer experience

  • A/Prof Sandra Taylor, Central Queensland University, Australia
  • Dr Susan Treloar, Queensland Institute of Medical Research, Australia
  • Dr Kristine Barlow-Stewart, Centre for Genetics Education, Australia
  • Dr Mark Stranger, University of Tasmania, Australia
  • Prof Margaret Otlowski, University of Tasmania, Australia

    • The final report from the consumer survey component within the Genetic Discrimination Project (GDP) in Australia is presented. Genetic discrimination is the differential treatment of asymptomatic individuals on the basis of their actual or presumed genetic differences. Of 1185 adults who presented at 15 clinical services between 1998 and 2003 regarding predictive testing for inherited conditions, 80% (n=951) met inclusion criteria for asymptomatic status at the time of survey mailing. Of these, 95% (904/951) nominated one relevant condition as most important; conditions were grouped as neurological (n=332), familial cancer (n=481), haemochromatosis (n=45) or “other” (n=46). Most respondents reported strong benefit overall from having genetic information, with benefits located mainly in health service domains. Coercion within the family context to undertake testing was reported by 32% (231/720) of respondents; other potential coercion sources were endorsed infrequently. Eleven percent (107/951) of respondents reported one or more specific incidents of alleged negative treatment; of 79 individuals who gave contact details, the accounts of 52 were verified at interview. Major domains of alleged negative treatment were life insurance products and employment (n=55); family relationships, psychosocial/stigma issues and privacy (n=37); and health professional and health service issues (n=24). Genetic carriers were no more likely to report incidents than non-carriers. Three quarters of respondents neither took action nor complained if treated negatively, although complaint was not always feasible. Perceived barriers to taking action are described. Overall, 15% (138/951) only of respondents knew of any official place to complain if treated negatively because of genetic issues. Respondents for whom neurological conditions were relevant differed significantly from other respondents on multiple dimensions. Final verifications will be reported and research limitations described.

    Conference Organiser - ICMS Pty Ltd