Research benefits from insurance ban on genetic tests

Thursday 31 October, 2019

A new ban on using genetic test results in the insurance industry will help medical research.

In 2017, the Australian Parliament’s Inquiry into Life Insurance recommended a moratorium, or freeze, on the use of some genetic test results, and on 1 July this year, an industry-imposed five-year ban began (it will last until the end of June 2024). The ban applies to the cheaper levels of life insurance and several other types of cover.

The government has been concerned that the use of genetic tests by insurance companies may have undermined our medical research efforts.

Groups as eminent as the federal parliamentary joint committee on corporations and financial services have been concerned that people’s reluctance to join research involving genetic tests has been potentially affecting advances in treatment as well as compromising our international research competitiveness.

One not-so-obvious spin-off of the ban is that people who may have a genetic predisposition for a particular cancer – an important group for researchers to work with – can now take part in clinical trials or research studies where predictive genetic testing may be involved without fearing that they will be refused or charged more if they then apply for life insurance or various other policies.

It is not yet clear whether people might continue to avoid participating in research studies for the time being, still fearing possible negative effects on future insurance applications that they could make after the current ban ends.

The new ban has critics, who are worried that the financial limits have been set too low and that the ban is self-regulated rather than under supervision from an independent body or the government.

The ban applies to lump sum death or total permanent disability policies to the value of $500,000; trauma or critical illness cover (or policies that combine both) up to $200,000; and to income protection, salary continuance or business expense policies that together total $4,000 a month or less. (Because of the way private health insurance and group life insurance policies are developed, genetic test results are simply not relevant, so there is no need for the ban to apply to these policies.)

The ban does not apply to policies worth more than these amounts, where insurance providers can still ask applicants to provide the results of genetic tests ordered by doctors, genetic tests that they may have had through being included in a clinical trial or research study or even a test done at home with a DIY kit.

Other countries, such as the USA, have laws permanently banning the use of genetic tests by insurance companies.

People with favourable test results can still provide them for any policy, whatever its value, and the company must take these results into account.

Even if people have unfavourable results from genetic tests, if they can show that they are taking preventative measures (such as having medical monitoring or screening tests), insurance providers must consider these actions as well as the test results.

Insurance providers must consider a person’s preventative measures, such as regular screening (Olena Yakobchuk/

“Insurance cover can be just one more obstacle for people affected by cancer to overcome,” says Hayley Jones, Acting Director of the McCabe Centre for Law and Cancer.

That’s what the Centre, set up by the Cancer Council and the Union for International Cancer Control, has found over the last few years through its work on access to life and travel insurance.

The McCabe Centre will continue to keep an eye on any developments affecting the moratorium as part of its focus on how to improve access to insurance for people affected by cancer

Anyone worried that they may have been discriminated against an insurance application can call Cancer Council on 13 11 20 and is encouraged to seek independent legal advice. Individuals can make formal discrimination complaints about their life insurer to their insurer or to the Australian Financial Complaints Authority.

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