Genetic testing is increasingly being used by healthcare professionals to more effectively identify and manage patients at risk or suspected of diseases such as glaucoma, as well as those with diagnosed disease.
However, despite the clear clinical benefits of genetic testing, there are concerns surrounding the ability for people diagnosed with a genetic risk of disease to obtain personal insurances.
While the Albanese government had stated that it would legislate to ensure people cannot be discriminated against based on their genetic background, it had yet to fulfil this commitment before calling a federal poll.1
Now the Australian Medical Association (AMA) is calling for action.
A partial ban or a vague moratorium only leads to more uncertainty and deters patients from having life-saving genetic testing and participating in genomic research.
The call follows a joint submission developed by the public health genomics team, led by Dr Jane Tiller, at Monash University.
AMA President Dr Danielle McMullen said genetic testing should be incorporated into everyday healthcare, but people are discouraged from participating in genetic testing or genomic research for fear of being frozen out of insurance cover if a genetic risk is uncovered.
“Genetic testing and genomic research have the capacity to rapidly transform healthcare in Australia by identifying the need for potentially life-saving treatment before an issue arises,” Dr McMullen said.
“It is hard to believe we are in a situation where people, acting through fear of financial penalty, might forsake genetic testing that could save their life or the lives of their children or other relatives.
“This must change. No one should have to fear undertaking genetic testing due to concerns over life insurance discrimination.”
After extensive lobbying, the government announced last year it would introduce legislation to ban the use of adverse genetic test results in life insurance underwriting, effectively ending the industry’s ability to discriminate against consumers based on genetic testing. However, this has still not occurred.
The joint submission provides extensive recommendations on how the legislation should be designed to support and protect people from genetic discrimination in life insurance.
“We need a ban to give consumers absolute certainty that their genetic status won’t be used by insurers to freeze them out of certain levels of cover,” Dr McMullen said.
“It is the only way to ensure Australians feel safe and confident their genetic results won’t result in discrimination.
“A partial ban or a vague moratorium only leads to more uncertainty and deters patients from having life-saving genetic testing and participating in genomic research.
“We need a national approach to the provision and regulation of genetic testing to ensure equitable access to testing in Australia.”
The joint submission is in line with the AMA’s position statement on genetic testing and genomics in medicine, which outlines a range of policy positions to reduce and eliminate genetic discrimination.
In a statement, AMA said it will continue its advocacy efforts to ensure that legislation banning the use of adverse genetic test results in life insurance underwriting is introduced and implemented.
Reference
- Jones S. Total ban on the use of adverse genetic testing results in life insurance (news release, 11 September 2024). Available at ministers.treasury.gov.au/ministers/stephen-jones-2022/media-releases/total-ban-use-adverse-genetic-testing-results-life [accessed March 2025].
