An Australian National University survey shows only 50% of people are aware that genetic testing information is used in insurance underwriting.

Kristine Barlow-Stewart, Genetic Counsellor Director of the Centre for Genetics Education, says only 10% of people think it is used, “so there’s a big education issue there”.

The Australian Survey of Social Attitudes found that people most able to afford insurance – those in the highest socio-economic bracket – were least likely to be aware of genetic testing.

“I think that’s quite concerning in terms of informed choice,” Dr Barlow-Stewart said. “90% of those surveyed – and it was a national survey – disagree with it being a mandatory test as part of the normal health check for insurance.”

A moratorium on genetic testing has been called in the UK, and Dr Barlow-Stewart would like to see that lead followed in Australia.

She says submissions to the Australian Law Reform Commission (ALRC), from the Human Genetic Society and generally from the professions involved in the area support a moratorium.

“The ALRC didn’t support that, but it did strongly recommend that a Human Genetics Commission of Australia be formed to monitor developments in the area – and that hasn’t happened, so it’s status quo.

“Since the only people who are doing the monitoring are small research groups, and the research will very soon finish, I believe there should be a moratorium.”