Life insurers face genetic testing ban under proposed law change

Australians at risk of genetic conditions may no longer face discrimination by life insurers with the government considering a major rule change.

Krystal Barter, pictured with her mum Julie-Anne, carries genes that put her at risk of breast cancer. She has welcomed the consultation. Picture: Justin Lloyd

A ban on life insurers discriminating against people on the basis of their genetic test results is a step closer and will bring Australia into line with the rest of the world.

Assistant Minister for Financial Services Minister Stephen Jones has opened a landmark public consultation on changing the law so that “we don’t discourage people from getting genetic tests and then having the treatments or the innovations that are necessary”.

The move comes after News Corp highlighted the plight of families at risk of inherited conditions who were being denied life insurance or charged higher premiums.

Many people who could benefit from knowing they carry a genetic predisposition to disease are avoiding testing because of concerns it could affect them financially.

A recent Monash University found one in three people who have a genetic test are being denied life insurance, charged higher premiums or have conditions placed on their cover.

Assistant Treasurer and Financial Services Minister Stephen Jones is poised to change the law allowing discrimination on the basis of genetic test results. Picture: Blair Jackson

Australia’s Disability Discrimination Act allows life insurers to discriminate against people on the basis of genetic testing.

A Parliamentary inquiry recently found the rule was unfair and the financial services industry agreed to a voluntary moratorium on asking for genetic test results for life insurance cover that cost less than $500,000.

People who have genetic tests and who live in the UK, Europe and Canada do not face the same financial limitations or discrimination.

“You’d have to say we’re behind the pack,” Mr Jones said on Monday.

Members of the public and interested parties have been asked to comment on three options as part of the government's consultation.

Under the first option the government would make no changes to the law.

The second option would involve the government banning completely or partially life insurers access to genetic test results.

The third option would legislate a financial limit below which insurers would have to provide cover without asking for genetic test results.

Humanise Health’s Krystal Barter with her mother Julie-Anne Barter. Ms Barter has welcomed the consultation over banning use of genetic test results by life insurers. Picture: Justin Lloyd

One of the key issues with banning the use of genetic test results is people who can prove they have not inherited their family’s risky genes would not be able to use that information to get a lower premium.

Therefore the consultation paper suggests a partial ban may be appropriate and this would align us with UK policy.

The paper also cautions that changing the rules may “impact the viability of the life insurance industry, for example due to consumers with adverse test results attempting to take out very large amounts of cover”.

However, it said this had not eventuated to date in other countries which ban the use of the test results.

Monash University's Dr Jane Tiller’s research found one in three people who had genetic tests faced discrimination from life insurers. Picture: Supplied

Patient advocate and Humanise Health founder Krystal Barter who carries genes that place her at risk of breast cancer has welcomed the consultation.

“As a family who has advocated for the end of life insurance discrimination this is a welcome step forward and it is up to patient groups to work together to ensure the change happens,” she said.

Monash University researcher Dr Jane Tiller who has studied financial discrimination faced by people undergoing genetic testing said “it is critical that Australians can make genetic testing decisions on the basis of health benefit, not financial fears.”

Originally published as Life insurers face genetic testing ban under proposed law change