Edwina Sawyer has been denied life insurance by half a dozen policyholders, but she's not sick.
She doesn't smoke or drink excessively, and has taken drastic preventative measures to guard against cancer.
But a genetic test she had a decade ago is barring the Sydney mother-of-two and her family access to insurance, she says.
Ms Sawyer and her brother both tested positive for Lynch syndrome, a mutation in one of their 'mismatch repair' genes that normally function to protect a person from cancer.
Not everyone with Lynch syndrome will develop cancer. A person with the mutation has an increased risk of bowel cancer of between 30 and 50 per cent.
Her mother died of bowel cancer when Ms Sawyer was 40, and her 12-year-old niece Margot died of brain cancer in February 2017.
"I wasn't a huge believer in taking out life insurance, but I wanted to take a look and have that option," Ms Sawyer said.
But she said she has been consistently denied cover.
"They classify my mutation as a pre-existing condition, when strictly speaking what it does is predisposes me to cancer."
People applying for life, disability, trauma, income and protection insurance must disclose any personal genetic test results they have received.
Disclosing she had Lynch syndrome also made it "extremely difficult" to get travel insurance, and when approved, the loading and premiums were "ridiculous".
"What I find really frustrating is that people who know they have a genetic mutation would be more likely than someone in the general population to take preventative steps," Ms Sawyer said.
The 50-year-old has had regular colonoscopies since her mother died. She underwent a total hysterectomy and a prophylactic mastectomy knowing people with Lynch syndrome are also at increased risk of other cancers, including endometrium, ovarian and stomach cancers.
"I've spent a huge amount of time and resources taking precautions and to make sure I'm as healthy as I can be."
She worries the risk of being denied life insurance could be a major deterrent to individuals with family histories of serious conditions undergoing genetic testing and subsequently missing out on treatment.
But her own children - who have a 50 per cent chance of inheriting the gene mutation - will "absolutely" get tested.
"It's hugely important that they are armed with the knowledge they need to protect their health," she said.
Insurers are able to discriminate against individuals who undergo genetic testing, and that threatens to hobble genomic research, bioethics and law experts have warned in a recent paper published in Public Health Genomics.
Anyone who receives their results of genetic testing as part of a research project needs to disclose them to insurers if asked, despite the Human Genetics Society of Australasia calling for research findings to be excluded.
Insurers can deny cover or hike up premiums for healthy individuals who discover they carry a mutation for a condition they may never develop based on the testing results, the authors warned.
Laws designed to prevent insurers from discriminating against individuals have wide exemptions, said lead author Associate Professor Ainsley Newson, bioethicist at the University of Sydney.
"There is already evidence that fears of insurance discrimination are putting people off either having a clinically indicated genetic test, or participating in research projects as volunteers," Dr Newson said.
An updated insurance industry policy launched in March this year by the Financial Services Council (FSC) "waters down protections for consumers", Dr Newson said. The policy does not apply to health insurance.
"There are all kinds of reasons why genetic research results are given to participants. The researchers may want to see how they cope as part of a psychosocial evaluation or to follow up on patients to see if they do go on to develop the condition of interest."
Dr Newson said it was imperative that individuals had the freedom to participate in research without the fear of it impacting their ability to buy insurance, especially when genomic medicine was in its critical early stages.
"A lot of research is speculative by nature ??? [and] genomic information is very dynamic and its meaning is changing quite rapidly and frequently, and can be uncertain," Dr Newson said.
"We are concerned insurers don't have the proper expertise to do the kind of analysis that is necessary."
The policy also implies that individuals need to tell their potential insurer that they are even "considering" genetic testing.
"This takes disclosure beyond the realm of medical information and into an individual's thoughts and intentions, which is too far," said co-author Jane Tiller ethical, legal and social adviser at Monash University's Public Health Genomics.
The authors argued there was little evidence to back the insurance industry's concerns that if they are not allowed to use genetic test results to inform decisions, applicants may sign up for larger premiums if they know they will develop a disease in the future.
Senior author Dr Paul Lacaze said Australia currently allowed the profit-driven life insurance industry to develop its own rules around what can and can't be done with people's genetic information.
"This is a conflicted situation and fundamentally inappropriate," Dr Lacaze said, characterising the policy as a "black cloud" over Australia's ability to advance its genomic research.
"Most other countries have banned the use of genetic information in insurance altogether, or have stricter independent government oversight."
The authors urged the Australian government to intervene and enforce stringent regulations on the industry that provides greater transparency and accountability over how premiums decisions are made and protect genomic research participants form discrimination.
FSC policy consultant Nick Kirwan said the policy protected the basic principle of insurance that the person taking out insurance and the insurer had the same information and the policy allowed exclusions where the person chooses not to receive the results of genetic testing
"The policy is not intended to discourage anyone from taking a genetic test if they want to, and in practise most insurers do not ask this question," Mr Kirwan said.
Referring to the need for applicants to disclose if they were considering genetic testing, Mr Kirwan said "life insurance is a long-term agreement so the policy is worded this way to discourage people from taking out insurance immediately before they have a genetic test and then cancelling the policy as soon as they get the result".
"The FSC strongly believes that a flexible, self-regulatory policy response, which gathers evidence to inform future settings, is the right way forward given the fast-evolving nature of the science," he said.
The FSC had provided data regarding adverse selection to researchers at University of Sydney. The findings would be published in the European Journal of Human Genetics in the coming months, Mr Kirwan said.