Patients risk death over insurance fears

There are renewed calls for laws to ban genetic discrimination with experts saying the current system is not good enough. 

There are renewed calls for laws to ban genetic discrimination with experts saying the current system is not good enough. 

One-third of Australians who have undergone or were eligible for genetic testing struggle to claim life insurance, prompting calls from clinical experts for the government to ban life insurance companies from discriminating against patients based on their genetic test results.

Screening for abnormalities like the BRCA1 gene, which indicates a huge risk of breast or ovarian cancer, could be life-saving for some Australians, but many forgo testing over fears they could be denied life insurance.

Unpublished research from the A-GLIMMER project showed 36% of patients who had taken or were eligible for genetic tests had difficulty obtaining life insurance policies which included insurers either rejecting their applications, placing conditions on policies, or charging them higher premiums.

A-GLIMMER is a Commonwealth-funded project set up to monitor the impact of a moratorium introduced by the Financial Services Council moratorium in 2019, which banned insurance companies relying on genetic test results for death cover up to $500,000, and income protection of up to $48,000 per year.

One-quarter of those unable to easily claim life insurance reported barriers after the industry self-regulated FSC moratorium.

A-GLIMMER lead researcher, lawyer, and genetic counsellor Jane Tiller told The Oz the government should either introduce legislation to ban genetic discrimination on goods and services for consumers or remove the exemption in the Disability Discrimination Act that makes it legal for life insurance companies to discriminate based on genetic test results. There are also calls to open up a clear appeals process for those who have been discriminated against.

Tiller also co-leads the large, publicly-funded study DNA Screen which puts forward an economic case for the federal government to provide free, nationwide genetic screening for a number of high-risk conditions.

"For every genetic advancement in terms of public health that we make, this question of what about the life insurance discrimination always comes up," she said. "It's a black cloud that hangs over all aspects of advancements in genomic medicine because there's this huge consumer protection problem that turns people off and makes people afraid."

She said currently, life insurance companies could ask to see any genetic test including an "at-home DNA test you got off the internet from China ... It doesn't need to be done in an accredited lab".

The project's chief investigator Margaret Otlowski said genetic discrimination still happens despite the 2019 moratorium.

"These things are still happening even with the moratorium, but also knowing that the moratorium is very limited in what it covers, and it doesn't give people the full peace of mind that a complete ban would," Otlowski, who has been working on genetic discrimination for two decades, said.

"From the point of view of advising of risk to someone who's contemplating a genetic test, whether it's clinical or research … you always have to discuss (potential life insurance implications). That takes time, it takes effort, but it also can put people off.

"Unless you literally take that off the table … It's always going to be a hindrance. It's going to be a barrier … And we're hearing that. People say I'm scared about the insurance implications or for my family or for the future."

Just one in six of those surveyed by A-GLIMMER, who had or were eligible for genetic testing, thought the moratorium limit of $500,000 was enough.

"The limits are problematic for many people," Victorian Clinical Genetics Services Clinical Director Martin Delatycki said.

Professor Delatycki said he had seen patients in the clinic who were at 50% risk of carrying the brca1 or the bowel cancer gene, but after discussing life insurance "never saw them again".

A woman with a brca1 gene fault has around an 80% chance of developing breast cancer and a 45% chance of developing ovarian cancer, while someone with a Lynch Syndrome gene fault could have a more than 50% chance of developing bowel cancer.

An FSC spokesperson said consumers who apply for life insurance cover below the moratorium limits will never need to share their genetic test results with their life insurer and so will never be declined life insurance.

“Limits are essential in getting the balance right because they cap the cross-subsidy between customers who have an adverse gene pattern and those who do not. The FSC believes the limits are generous by international standards and are higher than the amounts of cover Australians typically choose," the spokesperson said.

One of Australia’s largest life insurers TAL said "where a genetic test has cleared a person of certain conditions, and the applicant wishes to disclose this to us, then more favourable insurance terms may be available".