Government seeks public views on changes to laws about genetic discrimination
Researchers want Australians to have their say on whether the Federal Government should ban life insurance companies from discriminating against people for whom genetic testing shows elevated risk of certain medical conditions.
But research has shown that many Australians don't know genetic discrimination is still legal, until they must choose between a genetic test that could save their life, and preserving their access to life insurance.
Following a Monash University-led report on genetic discrimination in life insurance, the Federal Government announced a consultation period until 31 January 2024. The Government is seeking submissions from all stakeholders, including the general public.
Possible Federal Government actions could include doing nothing, legislating a total or partial ban on life insurers using genetic results, or legislating a financial cap on the amount of cover consumers can obtain before having to provide insurers with their results.
Monash University School of Public Health and Preventive Medicine Public Health Genomics Ethical, Legal & Social Adviser Dr. Jane Tiller led the Final Stakeholder Report of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project.
As the report recommended to the Federal Government, Dr. Tiller wants a total ban on discrimination, with no limits, caps or exclusions, like Canada's legislative ban. Her team has developed a form that people can use to make a submission to the government about their experiences and/or advocate for change.
Dr. Tiller welcomed the consultation. "The Australian public now needs to tell the government what has to be done, so the public needs to be told that this opportunity exists," she said.
"This is a critical juncture for the Australian public," she said. "At some point in the coming years, all Australians will be offered genetic testing in some form or another. How well protected they are against discrimination on the basis of their DNA might depend on whether they take action now to ask the government for a total ban."
Australian Genomics Managing Director Tiffany Boughtwood also highlighted the role the public needed to play in the consultation process.
"This is a huge step forward for genomics in health," Ms Boughtwood said. "We can't continue to have Australians avoiding these tests because they fear the insurance consequences downstream. This review is a great opportunity to look at how we can change that, and I strongly encourage people to take advantage of the consultation process."
The A-GLIMMER report was led by Monash University experts, in collaboration with the Universities of Melbourne, Sydney, Queensland, Tasmania, Deakin University and other clinical and consumer partners.
It found that genetic discrimination in life insurance occurs in Australia, and deters individuals from having genetic testing and participating in research.
More than 90% of health professionals (93), 88% of patients with experience of genetic testing, 78% of the general public, and 86% of researchers believed legislation was required to regulate the use of genetic test results in life insurance underwriting.
The report followed a2018 Federal Government Joint Parliamentary Committee Inquiry report that recommended a ban on genetic discrimination in life insurance underwriting.
In 2019, the life insurance industry's peak body, the Financial Services Council (FSC), introduced a partial moratorium requiring applicants to disclose genetic test results only for policies above certain financial limits. The FSC Moratorium is industry self-regulated, with no government oversight.
The consultation period ends on 31 January 2024. Members of the public can provide feedback here.
Provided by Monash University