Genetic discrimination investigated in Australia
Dr. Kirsty Horsey
Progress Educational Trust08 November 2005
Some Australian insurance companies are discriminating against people who have taken predictive genetic tests, according to the government-funded Genetic Discrimination Project. A survey carried out by the group identified 87 people who have suffered 'specific instances of negative treatment', according to New Scientist magazine. Team leader Kristine Barlow-Stewart reported the findings at the annual meeting of the American Society of Human Genetics, held recently in Salt Lake City, Utah.
The project is aiming to identify people who have encountered discrimination after taking a genetic test, and to help them seek redress. The team surveyed 1185 people who had undergone predictive testing for conditions such as Huntington's disease and hereditary breast cancer. Around seven per cent of the respondents said they had been disadvantaged as a result, although none has pursued a formal complaint. Barlow-Stewart said this is because people don't know where and how to complain, and also, 'even though there are systems in place, they aren't using them'.
The researchers are now conducting follow-up interviews, and are helping some of the respondents - including a woman who found out that she carries a BRCA1 gene mutation. The mutated gene puts her at increased risk of breast and ovarian cancer, but she was denied cover for all forms of cancer by her life insurance company. Although insurance companies are permitted to ask their customers if they have taken any genetic tests, they are only allowed to use the information in 'statistically relevant' ways. According to team member Sandra Taylor, around 15 per cent of the survey participants said they had not applied for life insurance, because they had been told they would be unsuccessful given their test result.
In 2003, the Australian Law Reform Commission published a report on dealing with human genetic information. Its recommendations included prohibiting genetic discrimination via existing discrimination laws, banning employers from using genetic information and requiring the insurance industry to improve consumer protection policies and practices relating to genetic information. However, none of these recommendations have been incorporated into the law.
Earlier this year, UK insurers agreed to extend current restrictions on the use of genetic test results until November 2011. A five-year moratorium imposed by the Association of British Insurers (ABI) was due to expire in November 2006. Previously, there had been calls to turn the moratorium into law, mirroring ongoing efforts in the US to pass similar legislation. Senators voted 98-0 in favour of bill S-603 - 'a bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment' - in February 2005.
Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.