Concerns about insurance are stopping Australians from having life-saving genetic testing.
Genetic screening can help prevent, diagnose and treat some conditions, however the life insurance industry is still allowed to ask for results when issuing some policies.
The industry’s peak body introduced a moratorium in 2019 designed to stop discrimination but a new report funded by the federal government has found it is inadequate.
Some 88% of patients with experience in genetic testing and 90% of health professionals who took part in the study said laws were needed to regulate the issue.
“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,” the report said.
Companies are only allowed to ask for genetic tests if coverage exceeds $500,000 for death and total permanent disability.
It also applies to trauma and critical illness policies greater than $200,000 and monthly income protection of more than $4,000.
But the report found instances of insurance companies asking about genetic testing contrary to the moratorium and flagged concerns about how the agreement was enforced.
Genomic scientists said worries about insurance coverage stopped some people from taking part in research.
Lead author and Monash University academic Jane Tiller said the federal government needed to protect consumers from genetic discrimination.
“Our research shows, overwhelmingly, that Australian stakeholders believe current protections against genetic discrimination are inadequate,” Tiller said.
The report called for updates to the Disability Discrimination Act and suggested the Australian Human Rights Commission ensure it was enforced.
A spokesman for the Financial Services Council, the industry’s peak body, said the genetics moratorium had been reviewed, strengthened and extended indefinitely.
The agreement will now be enforced and overseen by an independent committee.
“[The committee] will also have the power to impose financial sanctions on subscribing life insurance companies that do not comply with their obligations,” he said.