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NSW mum calls on government to introduce laws for life insurance companies preventing decisions based on genetic tests

A NSW mum is calling on the government to put in place laws that prevent life insurance companies from what she says discriminates against people based on their genes.

Kristie Ivone was diagnosed with breast cancer last September, and later discovered she carried a cancer gene linked to four different types of the disease.

WATCH THE VIDEO ABOVE: Albury mum pleads with government to protect Aussies from genetic discrimination.

Watch the latest news and stream for free on 7plus >>

The Albury mum fears her children may be deterred from undergoing genetic testing, to see if they carry cancer genes, if laws protecting the community are not put in place.

“It’s something I haven’t chosen for myself, so of course that feels really unfair,” Ivone told 7NEWS.

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“I can’t be discriminated against for any other reason.

“Not based on my age or my gender or my ethnicity or any other reason, but I can be based on my genes.”

In Australia, it is legal for insurance companies to make decisions based on genetic information, meaning those with any hereditary condition – not just cancer – could be left to pay a fortune or be completely ineligible for cover.

“It can be anything, really, that the company decides,” Ivone said.

“And that’s the problem.

“It takes this matter out of the hands of ordinary people and puts them into the hands of big corporations.”

The lack of regulation leaves Ivone’s siblings and children with a difficult decision, she said.

“The emotional toll is huge, actually,” Ivone said.

“The genetic testing is — in and of itself, it’s a really difficult decision anyway.

“It’s complicated by the fact that there are these life insurance implications.”

Kristie Ivone fears her children may be deterred from undergoing genetic testing if laws protecting the community are not put in place. Credit: Facebook

A self-imposed partial moratorium was placed on the life insurance industry in 2019.

The moratorium allows people to take out life insurance cover — up to prescribed limits — without having to disclose any adverse results of a genetic test.

Funding was then allocated to researchers at Monash University in 2020, so they could examine the partial moratorium and its effectiveness.

Dr Jane Tiller was part of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project carried out using this funding.

She said the partial moratorium didn’t go far enough, and that life insurance companies should not be able to make decisions based on the results of a genetic test at all.

“Overwhelmingly, the answer was no, it isn’t adequate,” Tiller said.

The report found the partial moratorium still discourages the community from participating in both established clinical genetic testing, which may identify a need for potentially life-saving treatment, and medical research involving genetic testing.

The potential impact of genetic testing on life insurance can lead people to “play Russian Roulette” with their health, Tiller said.

“It’s a real tragedy,” she said.

It can also make an already tough situation totally overwhelming when loved ones are faced with genetic testing in the wake of someone falling ill or dying from potentially genetic illnesses, she added.

“It’s one more pressure, one more stress,” Tiller said.

Changes required

There is currently no government oversight on how life insurers use genetic test results.

Ivone and Tiller hope there will be changes made, like what has already been seen in the UK and Canada.

Insurers should no longer have any access whatsoever to genetic testing results, Tiller said.

“It needs to be off the table completely.

“A total ban that protects everybody.”

The A-GLIMMER Project recommended that the government amend the Disability Discrimination Act 1992, to prohibit insurers from using genetic or genomic test results to discriminate between applicants for risk-rated insurance, and consider amendments to the regulation of financial services to ensure insurers are subject to a positive duty to not discriminate.

“We’re not asking Australia to lead the pack, (we’re) asking Australia to catch up,” Tiller said, adding insurers should see the benefits of making genetic testing more appealing to the public.

Aside from the human rights impacts of the issue, “from an economic point of view, it’s important people can make decisions that keep them alive and out of hospital”, she said.

Taking the threat of insurance repercussions off the table will create a better preventative space, Tiller said.

The federal government has conducted public consultation, which closed in January.

“This is consultation that will shape the government’s response,” Albury MP Justin Clancy said.

“We really need to look at the relationship between genetic testing and the ability to access insurance.”

The Financial Services Council, that put in place the partial moratorium, has been contacted for comment.

-With Claire Ciantar

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