Life insurers soon won’t be able to discriminate against you based on your genes

A bill that would ban life insurers from discriminating against Australians based on results of genetic testing has been introduced to parliament this week.

If passed into law as expected, the legislation would ban life insurers from taking into account the results of genetic tests that gauge your risk of disease when choosing whether to provide cover and how much to charge for it.

The bill, which was introduced to the House of Representatives on Wednesday, has broad bipartisan support. It follows almost a decade of research, consultation, community pressure and political efforts to end this form of genetic discrimination.

What happens currently?

There are many forms of life insurance, including death cover, income protection, trauma, and disability insurance.

Life insurers can legally discriminate based on health and other risk information, including genetic test results showing someone’s future risk of disease. This means they can decline to cover a person altogether, increase the cost of their premiums, or place conditions on their cover.

But our previous research showed fear of insurers discriminating based on their test results deters people from having genetic testing.

Genetic testing to identify the risk of diseases that can be prevented or detected and treated early can save lives. This includes variants in genes such as BRCA1 – made famous by Angelina Jolie – which lead to a high risk of breast, ovarian and prostate cancer, and at younger ages.

Genetic testing for someone’s risk of disease also includes gene variants that lead to a high risk of other cancers and heart disease, among others.

After genetic testing shows someone is at high risk of a particular disease, they can enter surveillance programs, take preventive medication or access other preventive measures.

For example, Jolie chose surgeries to prevent cancer.

So genetic testing can dramatically change the future for people at risk of preventable disease.

Protection is more important than ever

Currently, most genetic testing to assess someone’s risk of disease is done reactively. This includes if someone has a strong family history or personal diagnosis of a particular disease.

But if we move towards population DNA screening – offering screening to all for high genetic risk of preventable diseases – many more people will be offered genetic testing and will have to consider the benefits and risks.

Pharmacogenomic testing gauges the likely reaction to certain medications, including antidepressants, pain medications and ones to manage your cholesterol or heart health. And this is also becoming available more broadly.

So in the future, protection from genetic discrimination will become more important than ever.

Read more: Health insurers are offering DNA testing to see how some medicines might work. What to know before you opt in

What is set to change?

The bill is set to amend insurance, and disability discrimination legislation. If passed, it will remove the current exemption for life insurance companies being able to discriminate on the basis of “protected genetic information”.

This includes all genetic tests, including testing for someone’s risk of future disease, pharmacogenomic testing, genetic testing sold directly to consumers, and testing for research purposes.

Protected genetic information also includes information about whether an individual or their genetic relative has had, intends to have, or has been recommended to have a genetic test.

But protected genetic information excludes diagnoses of disease, even if that diagnosis was made through a genetic test.

So if an applicant has been diagnosed with a disease using a genetic test ordered by their doctor, insurers would continue to be able to use this information in underwriting. Insurers would also still be able to use a clinical diagnosis, even if made without a genetic test, to calculate someone’s premiums or make decisions about offering cover.

The bill does not apply to private health insurance, which is already community-rated in Australia. This means that while health insurers can apply waiting periods for people with existing health conditions, they cannot decline cover or change the cost of premiums for people based on health data.

One issue that has arisen with the bill is that once the legislation is in force, it would apply to all new life insurance contracts. However, it would not apply to anyone with current contracts that contain penalties or discriminatory terms.

Insurers could re-underwrite this group. However, that process may be disadvantageous for people if they are significantly older than they were when they first took out their insurance policies.

This has been a long time coming

In 2018, a parliamentary inquiry first recommended the government ban the use of genetic information in life insurance.

In 2023, following years of research and advocacy, my research group recommended to government that it should introduce a legislative ban on the practice.

Later that year, the government held a public consultation, with almost all the submissions supporting a total ban. In 2024, the government announced it would legislate a ban.

The bill introduced this week must still pass through the House of Representatives and then the Senate. Given this is the last parliamentary sitting week of 2025, this is expected to happen early next year.

The bill is expected to come into effect six months after it is passed. This would allow time for life insurers to update their processes.