Moratorium on Genetic Testing & Life Insurance: Monitoring the impact

Genetic Testing and Life Insurance

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Key Aims/Outcomes

The overarching goal of this project is to ensure adequate evidence is collected over the next three years to inform the 2022 FSC review - and help determine the appropriateness of the FSC moratorium as a long-term regulatory solution for the use of genetic test results in life insurance underwriting. The specific aims are to:

  1. Assess dissemination and awareness of the FSC moratorium, after its implementation in July 2019.
  2. Determine the impact of the moratorium on healthcare, research and the financial services industry
  3. Determine the adequacy of the self-regulated FSC moratorium, as a long-term regulatory solution.

School Priorities

Screening and early detection of disease

Project Summary

Our project brings together Australia’s leading researchers, clinicians, patient groups, and policy experts to answer an over-arching research question - is the FSC moratorium an appropriate long-term regulatory solution for Australia? We will address this by collecting quantitative and qualitative data post-moratorium, directly comparable to similar data we collected and published pre-moratorium (baseline). We will have input from consumers, healthcare providers, researchers and the FSC to ensure a study design which captures the opinions and experiences of all key stakeholders.

Funding Sources/Amount

Medical Research Future Fund (MRFF)


Project Time Frame

November 2020 to November 2023.

Research Team Members

A/Prof Paul Lacaze - Monash University

Jane Tiller - Monash University

Prof Otlowski - University of Tasmania

Prof Barlow-Steward - University of New South Wales

A/Prof Aideen McInerney-Leo - University of Queensland

Prof Martin Delatycki  - Murdoch Children's Research Institute

Prof Louise Keogh - University of Melbourne

More Information

Louise Keogh