Australian academics say people are avoiding potentially life-saving genetic testing because they fear it will affect their life insurance policies. 

They have called for laws to protect people, who undergo genetic tests identifying elevated risks of certain medical conditions, from being discriminated against by life insurers. 

The insurance industry has a moratorium on genetic testing to prevent discrimination, but the Federal Government funded report, led by Monash University, says it is not enough. 

Genetic discrimination in life insurance stopped people from participating in research and genetic testing, the A-Glimmer Final Stakeholder Report concluded. 

The report found that 93% of health professionals, 88% of patents with experience in genetic testing, 78% of the public and 86% of researchers believed regulation of the use of genetic testing results in life insurance underwriting required legislation. 

The Financial Services Council (FSC) has rejected the call, saying the just updated Life Code of Practice further strengthens protections and consumers concerned about a breach could take it up with the independent Life Code Compliance Committee. 

“The genetics moratorium has been reviewed and strengthened and has been extended indefinitely as part of the Life Insurance Code of Practice from 1 July 2023,” the FSC said. 

“The expanded genetics moratorium will be independently enforced and overseen by the Life Code Compliance Committee which will also have the power to impose financial sanctions on subscribing life insurance companies that do not comply with their obligations under the code, including the moratorium.”  

The A-Glimmer report, a collaboration between Monash, Melbourne, Sydney, Queensland, Tasmania, and Deakin universities, followed an earlier 2018 Joint Federal Parliamentary report which recommended a ban on genetic discrimination in life insurance underwriting. 

Monash University School of Public Health and Preventive Medicine Public Health Genomics Ethical, Legal & Social Adviser Jane Tiller, who led the research project, says people overwhelmingly believe “current protections against genetic discrimination are inadequate, and that legislation is required”. 

 “We are calling on the government to legislate to protect consumers from genetic discrimination and remove the barrier to genetic testing and genomic medicine.” 

The A-GLIMMER report says genetics have great potential to improve medicine and public health by enabling diagnosis, prevention, and early treatment of disease.  

“Insurance fears can also act as a barrier, by deterring people from having potentially life-saving genetic testing that could match them to tailored interventions and treatments, as well as from participation in genetic research,” the report finds.