After her mother was diagnosed with breast cancer, Meg Herrmann decided to be genetically tested for an inherited cancer-causing gene.
“I thought, ‘I have to know.’ Hereditary cancer can develop at any point in your life and you have a 70% chance of developing it,” says the Brisbane PhD candidate.
Twelve weeks ago, the 25-year-old underwent a preventive mastectomy. As a carrier of the BRCA2 gene, the surgery reduced her chance of developing breast cancer by more than 95%.
While she has taken life-changing steps to benefit her health, her financial future hangs in the balance. Under the Disability Discrimination Act, she could be denied life insurance because she took a genetic test that revealed her cancer risk.
The practice – known as genetic discrimination – is now under scrutiny, with submissions to the federal government’s consultation on the use of genetic test results in life insurance underwriting closing on Wednesday night.
In Australia, an exception to anti-discrimination legislation allows insurance companies to use genetic information to refuse, limit or increase the cost of life insurance cover.
A 2018 parliamentary joint committee called for an industry ban on genetic discrimination, and since 2019 an industry self-regulated partial moratorium has barred life insurance companies from using genetic information from people who make applications under certain limits, such as $500,000 for death cover and $4,000 a month for income protection. Providers are still legally permitted to request genetic information under current legislation.
“I’m less likely to have a life insurance payout now because I had the genetic testing that allowed me to take preventative measures,” says Herrmann, whose great-grandmother and great-aunt all developed breast cancer in their 20s.
“But if I was too concerned about the risks that genetic testing would pose to my financial future, I could be a BRCA2 carrier without knowing. And I would be more likely to need a life insurance payout if I didn’t have the have not taken a genetic test.”
It’s a dilemma familiar to Matthew Howie, one of more than 850 people and organizations who have responded to the consultation document since it was launched in November.
The retiree from Adelaide was diagnosed with hemochromatosis after presenting to his doctor with sore joints and fatigue. The iron disorder is easy to treat but can lead to permanent organ damage and can only be diagnosed through a genetic test.
His four children, now 71, are at risk of developing the same condition. His grandchildren have been advised by a doctor not to undertake genetic testing “as it may affect their insurance”.
As a volunteer with the advocacy group Haemochromatosis Australia, he advises haemochromatosis sufferers to encourage first-degree relatives to have genetic testing, but they are often uneasy about how it might affect life insurance.
“My concern is that life insurance deters people from genetic testing and that people don’t become aware of their symptoms until their body has a significant iron overload,” he says. “Early intervention is the key to controlling this condition.”
‘Nobody is trying to die to get a life insurance payout’
Dr Jane Tiller, who has led a push for a complete ban on genetic discrimination, says Australia is “far behind” the UK, which agreed to end genetic discrimination in 2001, and Canada, where a complete ban not only does not apply to life. insurance industry, but to all goods and services.
“Stakeholders in Australia do not think the moratorium is sufficient in any way,” says Tiller. She predicts that all Australians are likely to be offered genetic testing within the next decade, making good protection against genetic discrimination “urgent”.
Council of Australian Life Insurers chief executive Christine Cupitt said last year it was “critical that regulation meets community expectations while also managing the risks and costs of life insurance fairly for all those insured”.
The organization points out that insurers “consider any evidence-based preventive treatment [consumers] undertaken which reduces their possibility of developing a hereditary disease”.
Financial Services Minister Stephen Jones said in November that Australians “don’t have to think about their hip pocket” when they think about preventive health.
“So many people across academia, industry and parliament have worked to bring attention to this issue, and we absolutely need to look at it,” he said.
Herrmann agrees and says it’s time to remove the threat of family-wide financial impacts for individuals investing in their future health.
“No one is trying to die to get a life insurance payout,” she says. “We want to actively do everything we can to avoid that.”