Life insurers should not have access to genetic testing information, a working group has told a parliamentary inquiry.

Australian Genetic Non-Discrimination Working Group Chairman Margaret Otlowski says refusal of cover based on genetic make-up would be unfair.

“Despite claims by insurance companies that adverse selection would result if they were not given access to genetic test information, we note there is very little or no evidence put forward to support such claims,” she told a parliamentary joint committee inquiry into the life insurance industry.

Professor Otlowski says European countries, and now Canada, have introduced legislation restricting access to genetic information.

“Expert evidence given before that decision was made suggested it would not have a significant impact on insurers or the operation of an efficient insurance market.”

The hearing was told of a woman who had a double mastectomy to reduce the risk of developing breast cancer, after testing indicated a high risk factor.

Her life insurer did not take this into account when assessing her for cover.

“Our independent assessment of this case indicated she should have been treated as having lower risk than the average Australian woman,” Professor Otlowski said.

“So there was clear discrimination in the way her application was treated. That casts doubt on the capacity of the insurance industry to fairly deal with such matters.”

More than a decade ago, recommendations were made that assumed the insurance industry would establish how genetic information could be safely used in underwriting.

But nothing has happened, Professor Otlowski says.

“That experience tells me that leaving it to industry to make the rules, to regulate its own use of genetic test information, has not worked. Something stronger is required.”

She wants the committee to recommend a restriction – either a legislative ban or moratorium – on insurers accessing this information.

“This should not be left to the industry with self-regulation,” Professor Otlowski said.

“It should be direct intervention by government to restrict access to genetic test information of a predictive kind, as opposed to diagnostic to explain why someone is already sick.

“Ideally, we would want no genetic test information to be in the hands of insurers.”