Sydney Morning Harald
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 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.
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.