Louise Kruger says genetic testing saved her. The mother of two found out she carried a breast cancer gene in her late 20s, which prompted her to go for regular check-ups and be extra vigilant to changes in her body. By the time she detected a lump, a decade later, she knew what to do.
“I was on the phone to a high-risk clinic [the next] morning,” she said. “I already knew all the right people to talk to. I went from diagnosis to double mastectomy within 10 days in the public system.”
Louise Kruger, a mother of two, says genetic testing saved her after she discovered she had the gene for breast cancer in her 20s.
With genetic testing poised to play an increasingly important role in healthcare – in prevention, diagnosis and treatment – good news cases like Kruger’s could become more common.
But there are concerns that unresolved issues about how life insurance deals with genetic testing – and whether companies put up premiums or deny people cover based on their results – are deterring people from tests that could improve their healthcare. The federal government will this year consider whether insurers should be banned from asking for, or using, test results.
Kruger said the decision to get tested in the first place was a difficult one. “It can surface a lot of emotions and make you think about mortality in circumstances where you’re very young,” she said.
“I don’t think it should be complicated by additional factors. You don’t want to dissuade a person making this decision because of insurance.”
The life insurance industry imposed its own standards in July 2019, when companies agreed they would no longer use genetic tests for insurance applications below certain financial thresholds. Companies can only request or use the results when the value exceeds $500,000 for death and permanent disability cover, $200,000 for trauma or critical illness cover, and $4000 a month for income protection.
Those figures, however, are less than the average insured sums for those policies, according to Australian Prudential Regulation Authority data. The average insurance value is $713,959 for death cover, $849,128 for disability cover, $207,414 for trauma cover and $7706 for income cover.
Data collected by the Financial Services Council over six months in 2021 found that, of 846 applications for cover that involved genetic testing, 77 per cent of cases were not affected. Nine per cent were adversely affected by their genetic test results when seeking cover above the threshold, 13 per cent received a lower premium than they otherwise would have, and 1 per cent fell below the financial threshold.
Dr Jane Tiller, an adviser in public health genomics at Monash University, said that fear of higher premiums or being denied cover was a barrier to people taking genetic tests.
“We know there is a huge appetite [for tests],” she said. “When people don’t sign up, and we ask why, they’ve read the consent materials and discovered this insurance issue exists.”
Tiller said she expected whole-population DNA screening to become part of Australia’s screening framework in the next 10 years, particularly for breast cancer genes, bowel cancer genes and genetic high cholesterol that can cause early heart attacks.
“As the research intensifies, costs decrease and tests become more available, this question of who has access to data and how it’s used is coming to the fore, and becoming much more relevant to more people,” she said.
“They’ll then have to consider: what are the implications for their insurance, and is their genetic data protected or not? If insurers can use that information with granularity to discriminate, we end up in that situation where insurance loses its value as a risk-pooling exercise.”
“As costs decrease and tests become more available, this question of who has access to data and how it’s used is coming to the fore.”
Dr Jane Tiller, public health genomics adviser at Monash University
Tiller is advocating an all-out ban on insurers using genetic testing information, which is already in place in Canada. In the UK, there is a ban on insurers using predictive genetic tests for all conditions except Huntington’s disease.
The federal Treasury department’s consultation on the issue, which closed last week, will probe four options: no change, a full ban, a partial ban, or financial limits.
Its consultation paper acknowledged the current regime is deterring people from life-saving testing and participating in genetic research, “for fear that it might impact their ability to obtain affordable life insurance”. It said those concerns would intensify as testing became more accessible and affordable.
But an all-out ban in line with Canada’s approach also risked “adverse selection”, where a consumer who was aware of their test results sought out a higher level of cover than they would have otherwise.
“Insurers would be unable to accurately assess the risk of a claim by that consumer. There are concerns that this may impact the viability of the life insurance industry … At its most extreme, [this] has the potential to threaten the viability of a market, or lead to insurers amending product offerings to moderate any impacts,” the paper said.
“However, there is limited evidence that such concerns have eventuated in jurisdictions with similar restrictions.”
A partial ban that had exemptions would be an alternative, but it could fail to address the problem of disincentives.
Another option would be retaining the financial limits – below which insurers cannot request or use genetic testing in their underwriting – and legislating to enforce them.
“This approach would ensure that consumers could obtain a certain level of cover, while limiting the scope for additional adverse selection,” it said.
The Actuaries Institute in its submission supported doubling the current thresholds, while the government consultation paper said death cover could be raised to $1.5 million. Both said the amounts should be regularly reviewed to ensure they remained appropriate.
Christine Cupitt, chief executive of the Council of Australian Life Insurers, said she welcomed government regulation.
“In many respects, we do support a broad prohibition on life insurers using predictive tests, unless expressly permitted by government regulation. Under the proposal we are putting in our submission, there would be a substantial reduction … in the circumstances [that people] are asked to provide the results of a genetic test,” she said.
“We know genetic testing is becoming more commonplace, more affordable, and giving people greater options. That’s why we think now is the time [for regulation] … It could lead to people taking positive steps to reduce their risk of developing a health condition, and proactively manage their health in a way they may not have if they did not have access to that information.
“We don’t want anybody deterred from taking a genetic test ... We want people to have peace of mind and confidence in accessing these tests and to make informed choices.”
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