Health groups demand urgent ban on genetic discrimination in life insurance

Health groups are calling on the federal government to urgently follow through on a promise to ban life insurers from using genetic testing to refuse cover or raise charges.

The announcement in September last year was widely welcomed by consumers, politicians, and groups that were part of a growing movement advocating for a ban on the practice.

But Monash University’s public health and genomics researcher Jane Tiller said a lack of progress on the legislation had impacted patients.

“Unfortunately, making an announcement doesn’t actually equate to putting the policy change in place,” Dr Tiller said.

“But a lot of people don’t understand that. 

A white woman with brown hair wearing a green jacket. She is sitting in an office filled with plants
Jane Tiller says the ban has widespread political support and could be passed quickly. (ABC News: Patrick Stone)

“I’ve had many, many queries from patients, from clinicians, from researchers, from community groups, telling me that there’s a lot of confusion and there’s a lot of uncertainty around whether the law has changed, whether the protection is in place, whether they should be counselling people differently.”

Dr Tiller said concerns about life insurance was the most significant reason why Australians refused genetic testing, despite potential health benefits.

Delay ‘harming’ patients

Breast Cancer Network Australia’s director of policy, advocacy, and support services Vicki Durston said people should not have to choose between protecting their health and their financial future.

“Our message to government is clear: deliver on what was promised and introduce legislation to ban genetic discrimination as a matter of urgency,” she said.

A woman in an office
Vicki Durston says about 5 to 10 per cent of breast cancers are linked to genetic mutations, but fear of insurance discrimination is deterring people from testing. (ABC News: Kate Ashton)

“Every delay continues to harm thousands of Australians who need to access genetic testing for early detection, prevention, and treatment decisions.”

Organisations Metastatic Breast Cancer Action Australia, Inherited Cancers Australia, and the Australian Medical Association raised similar concerns with the ABC’s AM program.

“We’d like to see it introduced as soon as possible and put in place,” the Heart Foundation’s chief medical advisor Professor Garry Jennings said.

“Consumers need really good confidence to make sure they get the testing done and don’t miss out because they’re frightened of financial consequences.”

Industry self-regulating

Australians skipping genetic tests being used by life insurers

Photo shows Gloved hand holding genetic test tubeGloved hand holding genetic test tube

Life insurance companies are accused of “genetic discrimination” in determining coverage and premiums, with researchers finding some Australians are skipping tests that could detect risk of disease to avoid the results affecting their life insurance.

The Council of Australian Life Insurers (CALI) has a self-regulated moratorium in place to prevent genetic discrimination.

Public health advocates argued it was not enough to protect consumers and change attitudes to genetic testing.

But CALI chief executive Christine Cupitt also backed calls for urgent government regulation and said the council had long supported this.

“Australians want this to happen and so does our industry,” she said.

“It is important the government introduces the ban without delay.”

Stephen Jones
Stephen Jones says the government wants to ensure people aren’t discriminated against when accessing life insurance. (ABC News: Mark Moore)

Assistant Treasurer and Minister for Financial Services Stephen Jones did not respond to a question asking if a ban would be delivered in this term.

He said Australians should not be discouraged from testing “out of fear it may impact their ability to get life insurance”.

“That is why the government is working on legislation to implement a total ban on life insurers using these tests to discriminate on the basis of genetics,” he said.

“Genetic research is constantly evolving so we need to ensure our legislation captures the intent of our decision and does not have unintended consequences.”

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