Researchers at the University of Tasmania, Australia, have conducted the world's first study to have verified incidents of genetic discrimination and warn that such incidents are likely to increase without better safeguards. The five-year study surveyed 1,000 individuals who have had genetic testing during the past ten years, finding that roughly 10 per cent experienced some level of discrimination, predominantly in the life insurance sector. Researchers confirmed 11 cases where healthy individuals had been discriminated against for their supposed genetic predisposition to disease - including nine cases relating to life insurance applications and underwriting, one involving a worker's compensation claim and one involving a parole application.
One man was refused insurance for any claims relating to cancer after a genetic test revealed he was slightly more susceptible to prostate cancer. In 2000, one woman believed to have a genetic mutation that predisposed her to breast and ovarian cancer was denied all income protection and trauma coverage. Three years later, the same insurance company granted income protection except for breast cancer to another woman who was believed to carry the same genetic mutation. Insurance representatives attributed the difference to the underwriters having updated scientific information by 2003.
Professor Margaret Otlowski, director of the Centre for Law and Genetics at the University of Tasmania, explained that despite the small number of incidents, 'for those it has affected it is significant', and that the findings indicate that these numbers will grow as more reliable and affordable genetic technology is developed.
Richard Gilbert, chief executive of Insurance and Financial Services Australia, said the cases represented a small proportion of those with life insurance and only two per cent (eight cases) of the estimated 400 applicants who had genetic testing were declined solely for genetic reasons.
Experts warn that the findings illustrate Australia's need for regulation in this area and support a bill expected to be introduced to the Senate that would extend the aegis of the Disability Discrimination Act 1992 to genetic test consumers by prohibiting discrimination on the basis of genetic predispositions. The study found that most Australian employers were not yet using genetic testing or genetic information to monitor existing or potential employees but responses indicated at least some would use genetic testing in future if it were inexpensive and accessible.
Currently, Australian insurers and employers may use a person's genetic information only if their actions can be justified. According to life insurance industry guidelines, genetic testing cannot be required but applicants must declare any genetic test results known to them for themselves or close relatives. Insurers are exempt from discrimination laws if their decision is based on scientifically and statistically reliable evidence.
The findings support policy recommendations by the Australian Law Reform Commission in 2003 for better protection against the misuse of genetic information in insurance underwriting and the implementation of ways to challenge adverse decisions, according to the study's principal author and director of the Centre for Genetics Education, Associate Professor Kristine Barlow-Stewart. Her main concern is that 'it may be too premature to use test results' for insurance underwriting. Similarly, Otlowski believes that most genetic tests currently available are 'not appropriate' because we are 'still learning how to interpret this data'.
Last year the US passed groundbreaking legislation prohibiting employment and health insurance (not life insurance) genetic discrimination. In the UK, the government and insurance industry have currently agreed a voluntary moratorium on the use of genetic test results until 2014.