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About the A-GLIMMER project

Project rationale

Given there is no current government oversight of life insurers’ use of genetic test results, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored, taking into account different stakeholder perspectives (consumers, healthcare providers, researchers and the financial services industry). That is the goal of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) project

The aims of the recommended policy change in this area are:

  • To reduce consumer fears related to insurance, which deter the uptake of clinical genetic testing and/or research participation
  • To eliminate genetic discrimination in the Australian life insurance industry
  • To remove a barrier currently compromising the success of genetic medicine in Australia
  • To ensure government oversight and monitoring to combat concerns with industry self-regulation

Proposed outcomes

For the moratorium to accomplish its intended aims, the following outcomes must be achieved:

1. Widespread and accurate awareness of the moratorium and its terms among consumer groups, health professionals, genetic researchers and research participants, ethics committees, financial industry members and regulators.

2. Confidence among consumers, health professionals, researchers and the insurance industry that the moratorium terms are strictly adhered to, and that breaches are rectified.

3. Timely and regular updates to policy, practice and processes in health care, industry and research to reflect the moratorium (e.g. industry practices, policy and processes, consent forms for genetic testing, policy and practice in genetics services and human research ethics committee (HREC) guidelines).

4. Adherence to the terms of the moratorium in the collection and use of genetic test results by all insurance companies, in practice.

Study design

A-GLIMMER will apply a mixed-method, multi-site approach to evaluate the impact of the insurance moratorium across four different stakeholder groups: Patients and consumers; Health Professionals; Financial Industry and Genetic Research Community.

Funding and Collaboration

Funding:

A-GLIMMER is funded by grants from the Medical Research Future Fund (MRFF).

Collaboration: