Final Stakeholder Report of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project.

The A-GLIMMER Project recommends that:

1. The Australian Government amend the Disability Discrimination Act 1992 (Cth) (‘the Act’) to prohibit insurers from using genetic or genomic test results to discriminate between applicants for risk-rated insurance, and consider amendments to the regulation of financial services to ensure insurers are subject to a positive duty to not discriminate.

2. The Australian Government allocate responsibility and appropriate resources to the Australian Human Rights Commission (‘AHRC’) to enforce, promote, educate and support individuals and all relevant stakeholders to understand and meet the new legal obligations under the Act. The AHRC should consult with a range of genetics and genomics experts and stakeholders to achieve this goal.

In 2018, a Joint Parliamentary Committee Inquiry into the Life Insurance Industry recommended that Australia urgently implement a moratorium (or ban) on the use of genetic test results in life insurance underwriting. In 2019, the life insurance industry introduced a partial moratorium requiring applicants to disclose genetic test results only for policies above certain financial limits. This moratorium is industry self-regulated, with no government oversight.

To investigate effectiveness of the moratorium as a regulatory solution to genetic discrimination in Australian life insurance, the Commonwealth Government funded the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project from 2020- 2023.

This Final Stakeholder Report sets out the A-GLIMMER Project findings – published and unpublished – and makes recommendations to the Australian Government (the Project funder). The studies undertaken as part of the Project investigated the views and experiences of health professionals, consumers, researchers, and financial advisors.

The A-GLIMMER Project’s research findings demonstrate that the moratorium is inadequate to address and prevent genetic discrimination in life insurance. It should be replaced with a legislative model of prohibition.

For more information, contact Dr Jane Tiller at jane.tiller@monash.edu