Media release: 13 December 2022

Researchers have called for the Australian Government to take action to protect consumers seeking life insurance from discrimination based on genetic test results, after finding that a current voluntary moratorium falls well short of recommendations from a Parliamentary inquiry. They warn that genetic discrimination leads to significant health harms, including deterring people at risk from undergoing genetic testing.

Published today in Public Health Research & Practice, a peer-reviewed journal of the Sax Institute, the paper compares the recommendations of a 2018 Parliamentary Joint Committee – which included a call for a ban on the use of predictive genetic testing in life insurance underwriting – with the provisions of an industry-regulated partial moratorium on the use of genetic testing results in life insurance, which was implemented in 2019.

Led by genetic counsellor, lawyer and researcher Jane Tiller of the School of Public Health and Preventive Medicine at Monash University, the paper found the moratorium falls well short of both the Australian Parliamentary recommendations and the practices of countries such as Canada, the United Kingdom or most European nations.

The Australian moratorium introduced by the Financial Services Council is self-regulated, without government oversight, and only restricts the use of genetic testing for life and disability cover of $500,000 or less, and for income protection of $48,000 per year or less – well under the average annual household income in Australia. Beyond these thresholds, all genetic test results must be disclosed for all types of life insurance policies – although the use of genetic tests for health insurance underwriting isn’t allowed.

By way of comparison, the UK Code on Genetic Testing and Insurance – an agreement between the UK government and insurers – prohibits all use of genetic test results by life insurers, with the single exception of death cover of over £500,000 (A$900,000) for people with a positive result for Huntington’s disease.

“Genetic technologies are transforming healthcare, and genetic testing for medically actionable conditions saves lives. We know that some at-risk individuals choose not to have testing or participate in genetic research because of insurance fears. To ensure public trust in genomics, the government must do more to prevent genetic discrimination and ensure all Australians can make decisions about genetic testing without fear of insurance implications,” Ms Tiller commented on publication of the research.

“Australia’s partial moratorium is industry-led and self-regulated, without any agreement or oversight from the Australian Government. Currently, there is no legal prohibition against life insurers using the results of genetic testing to charge people higher premiums or deny them coverage altogether. This applies to death cover, total and permanent disability, critical illness/trauma and income-protection cover,” she added.

The authors note that it has not been uncommon for the insurance industry to strongly oppose any regulation of the use of genetic test findings in insurance underwriting by government. But they add there is no evidence of an adverse impact on the industry in the many international jurisdictions where the use of genetic test results in insurance underwriting has been restricted or banned.

The authors urged the Australian Government to consider implementing non-discrimination legislation to protect consumer genetic information in response to the findings that the current moratorium failed to meet the Parliamentary Committee recommendations.

Please acknowledge Public Health Research & Practice as the source for any stories on our papers.

The link to the published article on the genetic discrimination and life insurance will be: https://doi.org/10.17061/phrp3242235. This link can be included in news stories.

Hugo Wilcken, Media Manager, Sax Institute
M: 0451 122 146   
E: hugo.wilcken@saxinstitute.org.au

Megan Howe, Editor, PHRP
M: 0404 466 526   
E: megan.howe@saxinstitute.org.au