The Sydney Morning Herald | March 10, 2009
By Deborah Smith

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.

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.

"Previous to this paper, only anecdotal reports of genetic discrimination have been available, with some commentators questioning whether or not the phenomenon actually existed," Professor Barlow-Stewart said.

In one case, two women with the same genetic fault linked to breast cancer applied for income protection to the same insurer three years apart.

One was denied any type of cover, while the other was offered insurance with an exclusion of breast cancer.

The different decisions were justified by the Insurance and Financial Services Association on the grounds of updated scientific information. "But I don't believe consumers should be penalised while the insurance companies are learning," said Professor Barlow-Stewart.

An expert assessment panel should be established to advise on which tests are sufficiently well understood to be used for insurance purposes, she said.

This was one of the recommendations of a 2003 report by the Australian Law Reform Commission. "And it still hasn't happened."

Under industry guidelines, insurers cannot compel people to have a genetic test, but those who have been tested must reveal their results.

It is only legal for companies to use this information if they can justify their decisions.

In the case of the man with the breast cancer gene, genetic experts judged his exclusion from claims relating to all forms of cancer was too broad.