A review of the legal framework around the use of consumers’ genetic test results by life insurance companies has begun, with the Federal Government releasing a consultation paper.
In a joint announcement, Assistant Treasurer Stephen Jones and Labor MP Josh Burns acknowledged community concerns that people are being dissuaded from taking genetic tests for fear of discrimination in accessing life insurance.
“So many people across academia, industry and the parliament have worked to bring attention to this issue, and we absolutely need to look into it,” Mr Jones said on November 27.
The pressure for legislative change has been ongoing: in 2018 a Parliamentary Inquiry recommended banning the use of genetic results in life insurance underwriting; in 2019 the life insurance industry introduced a partial, self-regulated moratorium; in June this year a Monash University report called for national legislation.
The A-GLIMMER study, led by Dr Jane Tiller and Professor Paul Lacaze, found the existing moratorium continues to discourage consumers from participating in both clinical genetic testing with potentially life-saving treatment, and medical research involving genetic testing.
All this has occurred against a backdrop of escalating genomic and genetic testing in research and clinical care to diagnose and treat disease.
“This is a huge step forward for genomics in health,” said Australian Genomics Managing Director Tiffany Boughtwood. “We can’t continue to have Australians avoiding these tests because they fear the insurance consequences downstream.
“This review is a great opportunity to look at how we can change that, and I strongly encourage people to take advantage of the consultation process.”
The consultation paper presents three options for regulating the use of genetic testing results in life insurance underwriting:
- no government intervention
- legislating a total or partial ban on life insurers using adverse genetic results
- legislating a financial limit, below which insurers cannot request or utilise adverse genetic testing results in their underwriting.
Australian Genomics advocates for strong regulation, in the form of a ban without limits or caps. Further details of its position and consultation response will be released soon.
Submissions close on 31 January 2024.