A family with a risky gene is split on genetic testing

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Finding unexpected family through the truth hidden in our DNA can be life-changing, but is the knowledge worth the potential consequences? Watch Insight episode DNA Doesn’t Lie on .

Linda Rudman always knew cancer ran in her family. She’s now discovered the reason, which lies in her DNA.

Linda underwent genetic screening in 2019 that revealed she had the BRCA1 gene — which leads to a high risk of developing breast or ovarian cancer.

“The first thing the genetic counsellor said to me was ‘you need to have your ovaries out and as soon as possible’,” Linda told Insight.

Within a few months, she underwent surgery to have both her left and right ovaries removed, and eventually had a .

Knowing the genetic risk ran high in her family, Linda encouraged her three daughters to also undergo .

“My daughters have got a one-in-two chance of carrying the gene,” Linda says.

and elderly woman with a grey bob and pearls round her neck and a middle aged woman with blonde bob smiling next to each other in a backyard

Linda (right) and her late mother Avril, who had breast cancer and also possessed the BRCA1 gene. Source: Supplied

To test or not to test

Initially, they were reluctant.

Linda’s eldest daughter Sam, 31, told Insight that she worried that if she did possess the gene mutation, it would be “quite a heavy thing to bear”.

But eventually, she decided “it’s better to know than to not know” and she had genetic screening, which revealed she also carried the BRCA1 gene mutation.

She’s now engaged in high-risk surveillance for breast cancer and has been advised to remove her ovaries between the ages of 35 to 40.

Her newfound knowledge about her DNA and her subsequent recommendations for future surgeries have led to other unintended life decisions.

“I thought that, with my age and considering [the risk of] ovarian cancer, dating and starting a family were becoming important to me,” she said.

“So, I moved to Melbourne [from WA] to be closer to family and the [Jewish] community.”

But despite Sam’s health discovery, Linda’s middle daughter Meg, 28, has chosen not to be tested.

“One of her reasons to not get screened is because of the current discrimination that is happening with life insurance policies,” Sam said of Meg’s decision.

Linda’s youngest daughter Hannah, 22, is yet to decide whether she’ll undergo genetic screening, as screening for the for the BRCA gene is generally recommended from age 25.

three young women smiling at the camera, the woman on the left has blonde hair and red lipstick and the woman on the middle wears a black top and has brown hair, the woman on the right has blonde hair

Sam (left) has chosen to undergo genetic screening for the BRCA 1 gene while Meg has elected not to. Youngest sister Hannah (right) is still to decide. Source: Supplied

‘Legislation in limbo’

In Australia, if a person makes a life insurance application, insurers can legally ask if they’ve had genetic testing.

“If you say yes, they will ask you for copies of those results and you are required to give it to them,” said Dr Jane Tiller, a genetic counsellor and public health researcher from Monash University.

“If the results show that you do have an increased risk of disease in your future, they can decline to cover you altogether.

“They can double your premium, put conditions on that cover — and that’s something that happens all the time.”

Jane says that the practice has been legal for a long time in Australia, despite being banned or restricted in many other countries such as Canada and the UK.

She notes DNA screenings can be used to highlight those predisposed to disease in the hope of improving outcomes.

“We’re trying to move into the area where we can use this kind of information for prevention so that we can actually prevent disease altogether.”

She is one of the professionals who, for the past nine years, have been calling for a ban on Australian insurers using genetic test results to deny, increase the premium or change the terms of a life insurance policy.

Life insurance companies can’t access your [genetic testing] results directly. But it is perfectly legal in Australia at the moment for them to ask for your results and to discriminate on the basis of them.

Dr Jane Tiller

In September 2024, the federal government announced it would ban “the ability to discriminate based on adverse predictive genetic test results by banning their use in life insurance underwriting”.

The announcement was even welcomed by life insurance companies themselves.

“We’ve long been clear about the need for strict regulation to ensure that no one is deterred from taking a genetic test to proactively manage their health,” the Council of Australian Life Insurers said in a statement.

Although the announcement of the ban came six months ago, no legislation has been introduced — leading to calls for action from doctors union The Australian Medical Association.

‘I was a ticking time bomb’

Norm always knew his family had a history of heart issues — but he never thought much of it.

That was until he saw a cardiologist at his wife Nancy’s suggestion, after experiencing shortness of breath during a cricket match.

“I had my heart surgery the following day,” Norm told Insight. “My arteries were over 90 per cent blocked; I was a ticking time bomb”.

a young family - a mum, dad and three young children - smiling in front of a white table with a spread of food in it

Norm and his wife Nancy with their three children who also possess the same Type 1 gene as Norm. Source: Supplied

When Norm and Nancy decided to have children, Norm underwent DNA screening.

This is when Norm discovered his familial hypercholesterolaemia, a genetic predisposition to high cholesterol — which, it turns out, his and Nancy’s children also possess.

“There are two types of FH genes … Type 1 and Type 2,” Norm says. “The Type 2 gene is more aggressive.”

Norm and his children have Type 1, which they manage with ongoing medication.

Norm maintains that without DNA screening, his kids would not be receiving the medical attention they need. This includes daily medication and access to the two top hospitals in Victoria with leading paediatric cardiac specialists.

“You’ve got the gene but it’s not the end of the world,” Norm says. “DNA screening helps us give greater certainty to our future.”

Is it better to know than to not?

While uncertainty surrounds the future of the government’s proposed ban, people like Meg remain conflicted on whether to undergo genetic testing that could flag potentially life-threatening health conditions.

Linda said she’s “very unhappy” about Meg’s choice, but acknowledges she had to “respect her wishes and understand where she’s coming from”.

“At the end of the day … having knowledge of what you carry, genetically, gives you power.”

And for more stories on sex, relationships, health, wealth, grief and more, head to hosted by Kumi Taguchi. Follow us on the , , , or wherever you get your podcasts.