After her mother was diagnosed with breast cancer, Meg Herrmann decided to get genetically tested for a hereditary cancer-causing gene.
“I thought, ‘I need to know.’ Hereditary cancer can develop at any point in your life and you have a 70% likelihood that it’ll develop,” the Brisbane PhD candidate says.
Twelve weeks ago, the 25-year-old underwent a preventive mastectomy. As a carrier of the BRCA2 gene, the surgery has 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 can be denied life insurance as 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 testing 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 deny, cap 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 prohibited life insurance companies from using genetic information of people making applications below certain limits, such as $500,000 for death cover and $4,000 a month for income protection. Providers are still legally allowed to request genetic information under the current legislation.
“I’m now less likely to have a life insurance payout because I have done the genetic testing which then enabled me to take preventive measures,” says Herrmann, whose great-grandmother and great-aunts all developed breast cancer in their 20s.
“But if I had been too worried about the risks genetic testing would put on 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 had not taken the genetic test.”
It’s a dilemma familiar to Matthew Howie, one of more than 850 people and organisations to respond to the consultation paper since it launched in November.
The Adelaide retiree was diagnosed with haemochromatosis 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 pinpointed by a genetic test.
Now 71, his four children are at risk of developing the same condition. His grandchildren have been advised by a doctor to not undertake genetic tests “as it could impact their insurances”.
As a volunteer with the advocacy group Haemochromatosis Australia, he advises haemochromatosis sufferers to encourage first-degree relatives to seek genetic testing, but they are often uneasy about how that might affect life insurance.
“My concern is that life insurance is dissuading people from genetic testing and people are not becoming aware of their symptoms until their body has a significant iron overload,” he says. “Early intervention is key to controlling this condition.”
‘No one’s trying to die to get a life insurance payout’
Dr Jane Tiller, who has been leading a push for a total ban on genetic discrimination, says Australia is “way behind” the UK, which agreed to end genetic discrimination in 2001, and Canada, where a full ban applies not only to the life insurance industry but to all goods and services.
“Stakeholders in Australia don’t think the moratorium is adequate 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”.
The Council of Australian Life Insurers’ chief executive, Christine Cupitt, said “the insurance industry welcomes government regulation”.
“It’s critical that regulation meets community expectations while also managing the risks and costs of life insurance fairly for everyone insured,” she said.
The organisation points out that insurers “take into account … any evidence-based preventive treatment [consumers] have undertaken that reduces their possibility of developing a hereditary illness”.
The minister for financial services, Stephen Jones, said in November that Australians “shouldn’t have to think about their hip pocket” when they think about preventive health.
“So many people across academia, industry and the parliament have worked to bring attention to this issue, and we absolutely need to look into it,” he said.
Herrmann agrees, saying it’s time to remove the threat of family-wide financial impacts for individuals investing in their future health.
“No one’s trying to die to get a life insurance payout,” she says. “We actively want to do everything we can to avoid it.”
