New Government Consultation on the Use of Genetic Testing Results in Life Insurance Underwriting


In November 2023, Assistant Treasurer, the Hon Stephen Jones MP, announced a national consultation on the issue of genetic discrimination by life insurers (the Consultation). Genetic discrimination has been the subject of significate debate in recent years due to concerns that people may decline genetic testing for fear that it could impact their access to affordable life insurance. As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) welcomes the Consultation announcement.


Announcement of this consultation is a response to the final stakeholder report from the 2023 Australian Genetics & Life Insurance Moratorium: Monitoring the Effectiveness & Response (A-GLIMMER) study, which aimed to monitor the impact and effectiveness of the Australian Genetic and Life Insurance Moratorium (the Moratorium) on the use of genetic test results in life insurance underwriting in Australia. Life insurance body, the Financial Services Council, introduced the Moratorium after a report by the Parliamentary Joint Committee on Corporations and Financial Services expressed concerns that the use of genetic tests in underwriting life insurance was discouraging participation in health research projects involving genetic testing. The aim of the Moratorium was to enable self-regulation and restrict life insurers‘ use of genetic test results up to certain policy limits.

In consultation with consumers, patients, health professionals and financial advisors, the A-GLIMMER research project identified that the Moratorium ‘continues to discourage consumers from participating in both established clinical genetic testing, which may identify a need for potentially life-saving treatment, and medical research involving genetic testing’. In their final report, the researchers conclude that the Moratorium is inadequate to address and prevent genetic discrimination in life insurance. 

As a partner organisation on the A-GLIMMER study, RVA contributed rare disease policy expertise, including feedback on survey design, dissemination of surveys and feedback on the final stakeholder report.

Download the final Stakeholder Report

Australian Government Consultation Paper

The Australian Government’s Consultation Paper on the use of genetic testing results in life insurance underwriting presents 3 options for regulatory intervention:

Option 1. No Government intervention.

Option 2. Legislating a ban.

Option 3. Legislating a financial limit.

Rare Voices Australia’s Position

RVA will submit a response to the Consultation advocating for Option 2, legislating a total ban to prohibit life insurers from requesting or utilising any adverse genetic testing results to inform their underwriting calculations. RVA’s position is informed by the foundation principles in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), ‘person-centred’ and ‘equity of access’. Our position also aligns with Action 2.4.1 in the Action Plan, ‘Develop policy that supports people living with a rare disease to have timely and equitable access to new and emerging health technologies’.

With at least 80% of rare diseases having genetic origins, the implications of genetic discrimination for people living with a rare disease and their families are far reaching. RVA encourages all relevant rare disease stakeholders to engage with this consultation and focus your responses on what is relevant from the perspectives of individuals, families and members of your communities. Without this change for strong protections, RVA is concerned that Australians living with a rare disease may continue to face genetic discrimination.

Submissions to the Consultation

Submissions to the Consultation are being accepted up until 31 January 2024. To read the Consultation Paper and for more information about the options for regulatory intervention as well as the submission guidelines, please visit the Australian Government’s The Treasury website.

If you would like to send an email to government regarding this consultation without writing your own submission, you may wish to send a message using this link.