Meg Herrmann, a Brisbane PhD candidate, made a crucial decision after her mother’s breast cancer diagnosis – she opted for genetic testing to determine her risk of inheriting 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,” Herrmann, 25, shared.
Twelve weeks ago, Herrmann underwent a preventive mastectomy after testing positive for the BRCA2 gene. This surgical intervention has significantly reduced her risk of developing breast cancer by over 95%.
However, while Herrmann has taken proactive steps to safeguard her health, concerns about her financial future have arisen. According to the Disability Discrimination Act, she may face denial of life insurance coverage due to her genetic test results, a practice known as genetic discrimination.
The issue of genetic discrimination has come under scrutiny, with submissions to the federal government’s consultation on the use of genetic testing results in life insurance underwriting closing recently.
In Australia, insurance companies are permitted to utilize genetic information to deny, cap, or increase the cost of life insurance coverage, thanks to an exception in anti-discrimination legislation. Despite a parliamentary joint committee’s call for an industry ban on genetic discrimination in 2018, a self-regulated partial moratorium has been in effect since 2019. However, insurance providers can still request genetic information legally.
Herrmann, who has a family history of breast cancer, expressed her concerns, stating, “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.”
Matthew Howie, an Adelaide retiree, faced a similar dilemma after being diagnosed with haemochromatosis, an iron disorder detected only through genetic testing. His concern extends to his children, who are at risk of developing the condition, and his grandchildren, who have been advised against genetic testing due to potential insurance implications.
Dr. Jane Tiller, an advocate for a total ban on genetic discrimination, emphasized Australia’s lag compared to countries like the UK and Canada, where such bans are in place.
Christine Cupitt, CEO of the Council of Australian Life Insurers, stressed the importance of balancing regulation with community expectations and the fairness of life insurance costs.
Minister for financial services, Stephen Jones, echoed the need to address this issue, emphasizing that preventive health decisions should not be marred by financial concerns.
Herrmann emphasized the urgency of removing the threat of financial repercussions for individuals prioritizing their future health, stating, “No one’s trying to die to get a life insurance payout. We actively want to do everything we can to avoid it.”
