After being informed of her mother’s breast cancer diagnosis, Meg Herrmann made the decision to undergo genetic testing for a gene known to cause hereditary cancer.

The PhD candidate in Brisbane stated that they realized the importance of understanding hereditary cancer, as it can arise at any stage in life and carries a 70% chance of occurring.

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%.

Although she has made significant changes to improve her health, her financial stability is uncertain. According to the Disability Discrimination Act, she may be refused life insurance due to undergoing a genetic test that showed her potential risk for cancer.

The process, referred to as genetic discrimination, is currently being reviewed as submissions for the government’s consultation on the incorporation of genetic testing outcomes in life insurance underwriting come to a close on Wednesday evening.

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In Australia, a specific circumstance within the laws against discrimination permits insurance companies to utilize genetic information as a basis for denying, limiting, or raising the cost of life insurance coverage.

In 2018, a parliamentary joint committee recommended prohibiting the use of genetic information for discrimination in the industry. Since 2019, there has been a self-regulated moratorium in place, preventing life insurance companies from using genetic information for applications below certain thresholds, such as $500,000 for death coverage and $4,000 per month for income protection. However, providers are still allowed to request genetic information under current laws.

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Herrmann, whose great-grandmother and great-aunts all developed breast cancer in their 20s, believes that undergoing genetic testing has lowered their chances of receiving a life insurance payout. This is because the results of the test allowed them to take preventative measures.

“If I had let my concerns about the potential financial implications of genetic testing stop me, I could have been a carrier of the BRCA2 gene without being aware. This would have increased my chances of needing a life insurance payout had I not undergone the genetic test.”

Matthew Howie, along with over 850 individuals and organizations, has submitted a response to the consultation paper since its launch in November. This is a familiar predicament for him.

The retiree from Adelaide was found to have haemochromatosis after reporting joint pain and tiredness to his doctor. This condition can be easily treated, but if left untreated, it can cause irreversible harm to organs and can only be detected through a genetic test.

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At the age of 71, his four kids may also be susceptible to the same condition. A doctor has cautioned his grandchildren against taking genetic tests, as it could potentially affect their insurance coverage.

As a volunteer for Haemochromatosis Australia, he suggests that individuals with haemochromatosis encourage their immediate family members to undergo genetic testing. However, many are hesitant due to concerns about potential impacts on their life insurance.

“I am worried that the presence of life insurance is discouraging individuals from undergoing genetic testing, resulting in delayed awareness of symptoms and significant iron overload in the body,” he explains. “Timely intervention is crucial in managing this condition.”

Nobody is purposely risking their life for a life insurance payout.

Dr. Jane Tiller, a proponent of a complete prohibition on genetic discrimination, states that Australia is significantly lagging behind the UK and Canada. The UK has already implemented a ban on genetic discrimination in 2001, while Canada’s ban not only includes the life insurance industry but also all other goods and services.

According to Tiller, those involved in decision-making in Australia do not believe that the moratorium is sufficient in any manner. She foresees that all Australians will probably have access to genetic testing in the next ten years, emphasizing the pressing need for adequate safeguards against genetic discrimination.

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Christine Cupitt, the chief executive of the Council of Australian Life Insurers, stated that the insurance industry is in favor of government regulation.

She emphasized the importance of balancing regulatory compliance with meeting societal standards, as well as effectively managing the potential hazards and expenses associated with life insurance for all policyholders.

The organization emphasizes that insurance companies consider any preventive measures that consumers have taken to lower their risk of inheriting a genetic illness.

In November, Stephen Jones, the minister for financial services, stated that Australians should not have to consider their financial situation when considering preventative health measures.

“He stated that numerous individuals from academia, industry, and parliament have worked tirelessly to bring awareness to this matter, and it is imperative that we investigate it.”

Herrmann concurs and suggests that it is necessary to eliminate the risk of financial consequences for families whose members are making investments in their long-term health.

She says, “Nobody wants to die in order to receive a life insurance payout. We make an effort to avoid that outcome at all costs.”

Source: theguardian.com