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Michelle Brasier has been told by doctors she has a 97 per cent chance of contracting cancer, and there is a genetic test she can undergo to determine her level of risk more precisely.
"But I actually haven't had the test, because if I do, I might not be eligible for life insurance," she said.
Ms Brasier's long been aware of her risk of disease. Her father and brother died of cancer in quick succession and her sister was diagnosed with precancerous polyps in her stomach.
It is the subject of much of her popular comedy, but it is now also the subject of a difficult decision — whether to gather as much medical information as possible, or create a financial fallback for her loved ones in the case of her death.
"I don't currently have life insurance and my partner and I are looking to buy an apartment," Ms Brasier said.
"I just don't know what would happen if we get into that situation."
Currently, Australian life insurers can request and use genetic testing results to underwrite their policies and Ms Brasier is adding her voice to a growing campaign calling for a total ban on the practice.
"There's been a study at Monash University and people in droves put off having these tests because they don't want to risk their family's livelihood," Ms Brasier said.
"People are really worried about their families and loved ones, which is absolutely reasonable, but it means that they're dying."
Insurance or information?
Jane Tiller is an ethical legal and social adviser in public health genomics at Monash University, and the author of a three-year research paper, Australia Genetics & Life Insurance Moratorium: Monitoring the Effectiveness & Response.
The report was funded by the federal government to monitor the impact of genetic discrimination in life insurance.
"We found, overwhelmingly, that people are deterred from having genetic testing because they are worried about the implications that genetic results might have for their life insurance," Dr Tiller said.
"This means that some people don't get genetic testing that could save their lives."
The paper also monitored the efficacy of a self-regulated industry moratorium placed on the use of genetic information by life insurers in 2019, banning companies from requesting genetic test results for life insurance policies under a certain threshold.
It found stakeholders believed the limits were too low, in some cases not being adhered to, and that there was low public confidence in its effectiveness.
Review underway
The federal government is undertaking consultation on future regulation of genetic testing in life insurance, based on Dr Tiller's research.
One option being considered is a total or partial ban on the use of adverse genetic testing results by life insurers, another is legislating a financial limit under which insurers cannot request or use genetic information.
Council of Australian Life Insurers chief executive Christine Cupitt said the industry was supportive of reform.
"We agree that the federal government should regulate the use of genetic test results by life insurers in the underwriting process," she said.
"Regulation should ensure people are not dissuaded from taking a genetic test to arm themselves with the information they need to proactively manage their health."
Dr Tiller said she and others were calling for the total ban to be put in place, in line with other countries like Canada, and in time for an expected uptick in genetic testing availability.
"In the next decade, we estimate every adult in Australia will be offered genetic testing. Everybody will be offered the potential for maybe life-saving genetic information," she said.
"Whether their genetic information is protected when they're offered that information depends on what the government does this year."
People are urged to make submissions to the federal Treasury's consultation paper on the matter before the January 31 deadline.
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