Insurance industry accused of genetic discrimination

TONY EASTLEY: You've heard of age discrimination or discrimination on the basis of gender, but what about people suffering discrimination because of what's in their genes? A new study has found that the insurance industry is using genetic information to decide who gets cover and how much they pay.

Simon Santow reports.

SIMON SANTOW: About a thousand people who'd undergone some form of genetic testing were asked about their experiences with insurance companies. Ten per cent of them had run into problems.

KRISTINE BARLOW-STEWART: Life insurance was the most common domain of concern cited by these respondents.

SIMON SANTOW: Each was in good health and unaffected by the area of family medical history for which they'd been tested.

According to associate professor Kristine Barlow-Stewart from the Centre for Genetics Information at Sydney's Royal North Shore Hospital, there was plenty of evidence of discrimination. KRISTINE BARLOW-STEWART: There was a range of concerns cited. In some cases people had been denied insurance outright either on the basis of their family history or because of a genetic test result.

In other cases their insurance premiums were loaded excessively or in other cases exclusion clauses were inserted into their policies for claims of cover at the onset of particular illnesses.

SIMON SANTOW: Simply because they had answered yes to a question 'have you ever had a genetic test for cancer' or that sort of thing?

KRISTINE BARLOW-STEWART: Some of the insurance applications would have asked that question directly but regardless of whether they'd been asked that question directly or not, it is part of the contract when applying for a life insurance that you must tell the insurer all information that is known to you that is relevant to your risk assessment. That would include, of course, your family history but also the result of genetic testing undertaken by you or your close relatives.

SIMON SANTOW: Isn't there a certain irony in all of this that genetic testing of course is completely voluntary and if you didn't find out, you couldn't be discriminated against? KRISTINE BARLOW-STEWART: Yes, and of course that's one of the concerns that we have. In two cases in this study we now have confirmed evidence that fear of discrimination by insurance companies and other perhaps employers are preventing people from accessing genetic testing and deriving the benefits that they may get from that and then this is a very concerning issue.

SIMON SANTOW: Experts expect the problem of genetic discrimination to grow with the popularity of genetic testing and screening at a time when medical science is evolving and becoming even more sophisticated.

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