Werkplaats Biopolitiek

10 Aug '00 - 382 W Official inaction as people with the wrong genes pay the price

Sydney Morning Herald, 10-8-2000

Life insurance companies will be able to use the results of genetic tests to determine premiums for at least the next year after the Federal Government ruled out immediate action to make the practice illegal.

Announcing an inquiry into the impact of gene technology on human rights yesterday, the Health Minister, Dr Wooldridge, said it would take a year or two before laws were framed to deal with genetic discrimination.

The postponement came as a national survey of families with genetic disorders revealed widespread discrimination, with more than 100 people reporting higher premiums or being denied life insurance, or difficultygetting insurance to cover income, superannuation and travel.

One healthy man in his 20s with a gene for the degenerative brain condition Huntington's disease was refused life insurance. His older brother, on the other hand, tested negative and was able to reduce his premium, previously set on a family history of the disease.

Another case involved a well woman in her 30s whose genetic test indicated a 70 to 90 per cent risk of developing cancer. Despite having regular screening for cancer, her superannuation was reduced and the life cover component refused.

Another woman, with a family history of bowel cancer, applied to join the Public Service but was told she would have to have a genetic test. When it proved positive, she did not pursue the job.

The study's author, Dr Kristine Barlow-Stewart, director of the NSW Genetics Education Program, will present her findings next Monday night at a public forum at State Parliament organised by NSW Young Lawyers.

Dr Wooldridge, meanwhile, asserted that Australia was still "three or four years away" from the widespread use of gene tests in insurance.

The Government inquiry will be conducted by the Australian Law Reform Commission and the Australian Health Ethics Committee.

The Australian Medical Association and the Investment and Financial Services Association, representing life insurers, have called for quicker action to deal with genetic tests and insurance.

The Federal vice-president of the AMA, Dr Trevor Mudge, said: "We do need a legislative framework ... we do need to get on with it."

The chief executive of the IFSA, Ms Lynn Ralph, said it was important that during the inquiry life insurance consumers had certainty.