National legislation is required to protect people against life insurance discrimination based on their genetic results, a recent study says.
The study’s final report demonstrates the flow-on effects of the discrimination, which is currently legal but deters people from having potentially life-saving genetic tests and participating in research.
The Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) project was funded by the Federal Government’s Medical Research Future Fund to monitor the current regulatory situation from the perspective of different stakeholder groups.
It found an overwhelming majority of health professionals, patients with experience of genetic testing, researchers and the general public supported Government legislation to regulate the use of genetic test results in life insurance underwriting.
The study was led by Monash University, in collaboration with the Universities of Melbourne, Sydney, Queensland, Tasmania, Deakin University and other clinical and consumer partners, and supported by Australian Genomics.
In 2018, a Parliamentary Inquiry into the life insurance industry recommended a ban on the use of genetic results in life insurance underwriting. In 2019, the life insurance industry introduced a partial, self-regulated moratorium, which prohibited the use of genetic test results for underwriting policies above certain financial limits.
Lead investigator Dr Jane Tiller said the moratorium had no Government oversight, and failed to meet the expectations of the Parliamentary recommendations.
“The moratorium is not providing the confidence many people need to proceed with genomic testing and research,” she said.
“We would like to see the Australian Government taking a proactive approach to consumer protection, as many other countries have done, to provide consumers with certainty and protect the future of genomic medicine.”
The Australian Government is considering the A-GLIMMER report’s recommendations. Dr Tiller said anyone who was concerned about genetic discrimination could write to their local Member of Parliament or Senate representatives to express their concerns.
The ELSI Genomics Network – a network dedicated to exploring the ethical, legal and social implications of genomics – will be hosting a conversation via Zoom on the findings of the A-GLIMMER project on Thursday 7 September at 2pm (AEST). Click here to find out more and register.