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18 January 2024

ALIGN has partnered with Australian Genomics to prepare a response to the Australian government’s consultation call around the use of genetic testing by life insurance companies to underwrite life insurance.

Currently, the Disability Discrimination Act provides an exemption for life insurers to use genomic or genetic test results when underwriting life insurance contracts. Since 2019, an insurance industry-regulated partial-moratorium has been in place that prohibits the use of these tests below certain financial limits.

The government, following the publication of a Monash University report, A‑GLIMMER, has become aware of community concerns that people are being dissuaded from taking genetic tests for fear of discrimination in accessing life insurance. A‑GLIMMER raised several concerns with the moratorium and called for government intervention.

The position that Australian Genomics and ALIGN have taken on the use of genetic testing results in life insurance underwriting is summarised as follows:

  • Legislation must be introduced to protect consumers, remove the fear of genetic discrimination, and ensure government oversight of insurers’ compliance.
  • The legislation should not contain any limits, caps, or exclusions, to ensure that consumers can be confident that their genetic results are fully protected. Partial consumer protection is inadequate.
  • Compliance with the legislation must be monitored, and there needs to be a strong pathway for enforcement and consumer complaints, so that consumers know where they can go to get help if an insurer is not complying
    with the legislation.
  • Particular attention should be given to the significant impact genetic discrimination has on Aboriginal and Torres Strait Islander People and the critical importance of these protections to avoid compounding inequity of access to genetic and genomic healthcare services and research.

You can read the full response from ALIGN and Australian Genomics here.

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