Australian Genetics and Life Insurance Moratorium

About genomic testing and insurance discrimination:

Use of genetic information by life insurance companies has been frequently described as a barrier to uptake of genetic testing and participation in genetics research.

In Australia, there is no government oversight of the use of genomic information in life insurance underwriting. In 2019, the life insurance industry body, the Financial Services Council, introduced a self-regulated agreement to restrict life insurers’ use of genetic testing for certain policy limits.

About the A-Glimmer study:

The study aimed to understand the impact, effectiveness and appropriateness of the Australian life insurance moratorium, taking into account four different stakeholder perspectives:

  • Genetic healthcare professionals

  • Patients and consumers

  • Insurance industry

  • Genetics researchers

To find out more visit the A Glimmer Website.

Contact us: aglimmer.study@monash.edu

Research outputs

Publications:

  1. A-Glimmer final report available here

  2. Yanes, T., Blencoe, M., Howard, A., Tiller, J., Wallingford, C., Otlowski, M., ... & McInerney‐Leo, A. (2024). Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance. American Journal of Medical Genetics Part A. Available here.

  3. Tiller J., et al. (2023). Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing. European Journal of Human Genetics. Epub ahead of print. Available here.

  4. Dowling G., et al. (2022). Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study. European Journal of Human Genetics. 30(11). Available Here

  5. Tiller J., et al., (2022). A step forward, but still inadequate: Australian health professionals' views on the genetics and life insurance moratorium. Journal of Medical Genetics. 59(8). Available Here.

  6. Tiller J., et al., (2021). Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project. BMC Medical Ethics. 21;22(1). Available Here

  7. In the news:

  8. Discriminatory rule enables life insurance providers to put ban on payouts over genetic testing
    Herald Sun, 29 May 2023

  9. How Australia is failing women at risk of breast cancer 10 years after Angelina Jolie's revelation
    The Daily Telegraph, 14 May 2023

  10. Protection for genetic test results urged
    The West Australian, 13 December 2022

  11. Patients forgo lifesaving genetic tests over insurance fears
    The Australian, 29 November 2022

Funding

This study is funded by grants from the Medical Research Future Fund (MRFF).