It’s a simple test that can save lives, but those who take it can face a legal form of financial discrimination  (2024)

Three months before undergoing a preventative double mastectomy, 25-year-old Meg Herrmann completed a half marathon and was the fittest she had ever been.

Now, 10 weeks after her surgery, she's just starting to get her strength back through an intensive rehab program.

"The recovery is full on. Obviously it's a major surgery, and it has a 12-week recovery period," she said.

Ms Herrmann decided to undergo the risk-reducing procedure after her mother was diagnosed with breast cancer in 2020.

"I think my mum is only just sort of starting to come back to her normal self and her normal energy levels, and she was diagnosed in 2020 with the 'best case' breast cancer diagnosis," she said.

"So for me, I am a very proactive person, and if I have the opportunity to do something, I'm really keen to just do everything within my power to make life a little more sort of predictable."

Genetic testing revealed Ms Herrmann,like her mother, has the BRCA 2 mutation, increasing her lifetime risk of developing breast cancer to 70 per cent, as well as making her more likely to develop ovarian, pancreatic and skin cancer.

Having that information meant Ms Herrmann was able to work with her doctors on a screening plan and access potentially life-saving surgeries.

Her risk of contracting breast cancer has now been reduced by 95 per cent, but it came at a cost to her financial future.

Because genetic testing found the BRCA 2 mutation, life insurers can legally use that information to discriminate against her, by refusing or capping her cover.

"As a person who is a BRCA 2 gene carrier, I will never be able to take out more than $500,000 in life insurance cover. Which [as a] reference point for me is $240,000 lower than the median house price where I live," she said.

"That's obviously quite frustrating considering that I've done everything I can — and I'm probably less likely to develop breast cancer than the next person on the street now.

"And yet, a smoker can go and ask for a higher level of cover. They might pay a higher premium, but they can. They're still entitled to a higher level of life insurance cover than myself.

"That is indescribably frustrating."

Insurance risks lead to test avoidance

It's estimated around 1.5 million Australians undergo genetic testing each year, as science around preventative medicine develops.

Public health and genomics researcher Dr Jane Tiller says the risk of becoming ineligible for life insurance is enough to discourage people from undertaking potentially life-saving testing.

"We find that a lot of people decide they don't want testing, they don't want to be involved in research, they don't want to have testing that could potentially save their life, because they're concerned about the future financial implications for themselves, or for their family members," Dr Tiller said.

Before undergoing genetic testing, it is recommended people go through a session with a genetic counsellor, who is responsible for outlining the potential implications for life insurance if a genetic mutation or condition is uncovered.

Dr Tiller says health professionals should not be responsible for giving financial advice.

"If you go to have a genetic test, your genetic counsellor or your research scientist has to sit down and explain to you what are complex financial implications, because you need to know about them before having that test," Dr Tiller said.

"That shouldn't be part of the scope of practice of health professionals, and it shouldn't be something that they're required to do."

It's often recommended that a life insurance policy should be taken out before testing, because insurers can't use the results on an existing policy.

But for Ms Herrmann, the financial commitment of life insurance was unaffordable.

"It was going to cost me potentially $7,000 in premiums ahead of taking out life insurance if I were to take it out at 22. So I decided not to take out life insurance," she said.

"I was thinking, well, if I take that out, you then have to maintain that level of cover and those premiums indefinitely, and changing life insurance providers is probably not an option.

"So it was a really big financial commitment for a 22-year-old uni student to try and wrap my head around."

Government considering a ban

The Albanese government is considering changing the Disability Discrimination Act to prevent life insurers from using genetic testing results, and is calling for public submissions until the end of January.

Assistant Treasurer Stephen Jones says the benefit of early detection and intervention through genetic testing is important for public health.

"We want people to have all the health interventions that they can, particularly if they're going to detect a genetic mutation or a cancer marker or any of these things that early intervention can be a life saving thing for them.

"We as a government are really keen to ensure that Australians aren't discriminated against on their access to life insurance products, but also that they're not discouraged from getting a medical intervention that might save their life," he said

Under the previous government, a joint parliamentary committee recommended in 2017 that legislation be introduced to ban the use of genetic testing results by insurance companies, but it was never actioned.

"If you look around the world, Australia is an outlier in this regard. So I think we're going to see more of it, not less of it. We want to ensure that our laws are up to date," Mr Jones said.

In 2019, life insurers put a partial ban on using the results of genetic tests on policies worth less than $500,000.

Chief executive of the Council of Australian Life Insurers, Christine Cupitt, says legislated regulation of genetic testing would have industry support.

"Life insurers have never wanted to deter anyone from taking a genetic test and having the information they need to manage their health," Ms Cupitt said.

"What we are seeing now is much more commonplace use of genetic tests and the ability to use them becoming much broader, so that's why we'd like to move from a self-regulatory model to regulation from government."

Submissions to the inquiry close on January 31.

Watch 7.30, Mondays to Thursdays 7.30pm on ABC iview and ABC TV