Deborah Smith
The Sydney Morning Herald
March 12, 2009

Australians have been refused insurance protection because of their genetic make-up, researchers have shown in the first study in the world to provide proof of genetic discrimination.

Most cases were found to relate to life insurance. In one instance, a man with a faulty gene linked to a greater risk of breast and prostate cancer was denied income protection and trauma insurance that would have let him claim if he developed other forms of cancer.

[efoods]The findings have led to renewed calls by experts for policies to ensure the appropriate use of genetic test results by the insurance industry.

The director of the Centre for Genetics Education at Royal North Shore Hospital, Kristine Barlow-Stewart, said the research also showed consumers needed to be better informed about their rights.

“Eighty-five per cent of the people in the study didn’t know where to go to seek assistance if they had been discriminated against,” she said.

Associate Professor Barlow-Stewart and her colleagues surveyed more than 1000 people who had attended clinical genetic services about their experiences of discrimination.

In a long, complex process that was only possible because of the assistance of organisations and companies that had carried out the discrimination, the researchers were able to verify 11 cases of genetic discrimination, and their results are published in the journal Genetics in Medicine.

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