After her mother was diagnosed with breast cancer, Meg Herman decided to undergo genetic testing for the gene that causes hereditary cancer.
“I thought, 'I need to know.' Hereditary cancers can develop at any point in your life, and there's 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, this surgery reduced her chances of developing breast cancer by more than 95%.
She has taken life-changing steps to maintain her health, but her financial future is in jeopardy. Under the Disability Discrimination Act, she could be denied life insurance because her genetic testing revealed her cancer risk.
The practice, known as genetic discrimination, is currently under scrutiny, with submissions to the federal government's consultation on the use of genetic test results in life insurance underwriting due to close on Wednesday night.
In Australia, an exception to anti-discrimination laws allows insurance companies to use genetic information to deny, cap or increase life insurance coverage.
In 2018, a joint committee of Congress called for the prohibition of genetic discrimination in the industry, and from 2019, a partial moratorium on industry self-regulation will require life insurance companies to pay certain limits ($500,000 for death benefits, $500,000 for death benefits, It is prohibited to use the genetic information of people applying for less than $4,000 (for example, $4,000 for death benefits). 1 month for guaranteed income. Under current law, providers are still legally allowed to request genetic information.
“Because I was able to get genetic testing and take precautions, my chances of receiving life insurance money were lower,” Herman said. His great-grandmother and great-aunt all developed breast cancer in their 20s.
“But if I had been too worried about the risk that genetic testing would pose to my financial future, I could have become a BRCA2 carrier without knowing it. If I hadn't had the genetic test, I might have lost my life insurance payout. would likely be needed.”
This is a familiar dilemma for Matthew Howie, one of more than 850 individuals and organizations who have responded to the consultation document since it was launched in November.
The Adelaide retiree went to the doctor complaining of joint pain and fatigue and was diagnosed with hemochromatosis. Although iron disorders are easy to treat, they can lead to permanent organ damage and can only be identified through genetic testing.
Now 71, his four children are at risk of developing the same condition. His grandchildren have been advised by doctors not to undergo genetic testing “because it may affect their insurance.”
As a volunteer with support group Hemochromatosis Australia, he advises people with hemochromatosis to encourage first-degree relatives to undergo genetic testing, but they are unsure of how this will affect their life insurance. They often have concerns about whether or not they should give their child something.
“My concern is that life insurance is discouraging people from genetic testing, and people don't notice symptoms until their bodies have significant iron overload,” he says. “Early intervention is the key to controlling this condition.”
'No one is willing to die to collect life insurance money.”
Dr Jane Tiller, who has been leading the push for a total ban on genetic discrimination, said Australia was “far behind” compared to the UK, which agreed to eliminate genetic discrimination in 2001, and Canada, where the ban applies not only to life. ” he says. This applies to all products and services, not just the insurance industry.
“Australian stakeholders do not believe that a moratorium is appropriate in any way,” Mr Tiller said. She predicts that all Australians are likely to be genetically tested within the next decade, making appropriate protections against genetic discrimination “urgent”.
Christine Cupitt, chief executive of the Council of Life Insurers of Australia, said last year: “It is important that regulation manages life insurance risks and costs equitably for all insureds, while meeting community expectations. ” he said.
The group notes that insurance companies “consider all evidence-based preventive treatments.” [consumers] We have worked to reduce the chance of developing genetic diseases. ”
Finance Minister Stephen Jones said in November that Australians “don't have to think about their back pockets” when thinking about preventive health.
“So many people in academia, industry and Congress are working to bring attention to this issue, and we absolutely need to look at this issue,” he said.
Herman agreed, saying that for individuals investing in their future health, it's time to remove the threat of financial consequences for the entire family.
“No one wants to die to receive a life insurance payout,” she says. “We want to be proactive and do everything we can to avoid that.”