Australia has passed a law banning life insurance companies from denying or restricting coverage based on the results of genetic tests or even based on whether an applicant or their genetic relatives have undergone or been recommended for genetic testing.

The legislation received support from both major parties and many independent politicians, as well as the Australian life insurance sector. Parliament passed the law on April 1, and it will come into effect in 6 months.

The ban is the result of more than a decade of lobbying, which first led to a 2019 moratorium on the use of genetic testing information in assessing life insurance policy applications but only on policies worth up to $500,000 (USD $347,000).

Subsequent research, however, found that the moratorium was inadequate for addressing and preventing genetic discrimination in life insurance, and that legislated prohibition was needed.

Following this research, a concerted effort successfully pushed for legislation that banned all use of genetic testing information, with no caps, limits, or exceptions for any genes or conditions.

Australia Leads the Way?

The Genetic Testing Protections in Life Insurance and Other Measures Bill bans the use not just of genetic testing information, but even information about whether an individual has had or been recommended to have a genetic test. The ban includes not only genetic testing information about the individual applying for insurance but also about their genetic relatives. Life insurers who violate the ban face civil and criminal penalties.

“This legislation will be world-leading in terms of what it does, its totality, its strong enforcement,” Jane Tiller, PhD, genetic counsellor and senior research fellow at Monash University in Melbourne, Australia, told Medscape News Australia. Tiller coauthored the report on the previous moratorium and has been pushing for legislation for a decade. “Other countries who looked at this in decades past will say, ‘Do we need to update our regulations?’”

The US, Singapore, and the EU have enacted similar policies, but they are less comprehensive than Australia’s. For example, the US Genetic Information Nondiscrimination Act, passed in 2008, applies only to health insurance, and its implementation varies by state.

Singapore has had a moratorium on the use of genetic testing information by insurers since 2021 but makes exceptions for certain genetic tests such as those for the BRCA1 and BRCA2 breast cancer genes, or the genes for Huntington disease.

Australia’s ban does not apply to the use of clinical diagnoses in underwriting decisions, regardless of whether that diagnosis was reached using genetic testing. It also only applies to policies applied for after the legislation comes into effect and not retrospectively.

The ban will save lives because concerns about life insurance implications were a major deterrent to people accessing preventive genetic testing, said Tiller. “Every consent form for clinical testing and every consent form for research has a paragraph in it that says insurance implications are a risk of this testing,” she said.

She had heard of patients who decided against testing because they feared that it would affect their insurability or that of their children. One such patient was a woman who was later diagnosed with a breast cancer linked to a genetic mutation.

Australia’s Medicare universal health insurance scheme already covers the cost of genetic testing for the BRCA1 and BRCA2 mutations, which are associated with a significantly elevated risk for breast and ovarian cancer, in patients with breast or ovarian cancer or a family history of these cancers.

Reducing Anxiety

The ban likely means that more women will undergo testing without fear of the consequences for their life insurance, clinical genetic counsellor Julia Mansour, CEO of the Human Genetics Society of Australia in Hobart, Australia, told Medscape News Australia. “If they do find that they have a gene change, then they can be more proactive about how they’re going to manage their health going forward to help reduce their risk,” she said.

The same principle applies to the increasing number of diseases where research was revealing underlying genetic causes or susceptibilities, where genetics may play a role in disease progression or treatment response. “There’s so much hope in the capacity of genomics to provide people with information that allows them to be proactive about their health,” Mansour said. “So it’s really great timing, in terms of being able to open the door to allowing people to approach genetic testing more freely and allowing them to not have that anxiety about the insurance implications.”

Tiller was the lead author on the A-GLIMMER Report, which was supported by the Australian government through the Medical Research Future Fund. Mansour had no relevant financial relationships.