CERA researchers have welcomed the Australian Government’s recent decision to ban life insurance companies from discriminating against people based on genetic testing results.

They say the change marks a pivotal shift in healthcare and research and removes significant barriers that have long discouraged Australians from undergoing genetic testing.

The change will be a major benefit for people living with conditions like inherited retinal diseases (IRDs) and age-related macular degeneration (AMD), where early diagnosis and intervention can be life changing.

The announcement by Assistant Treasurer Stephen Jones, ensures that Australians can now undertake genetic testing without fear that it will impact their ability to access life insurance.

The move is expected to encourage greater uptake of genetic testing, empowering consumers to make informed decisions about their health and unlocking new opportunities for medical research.

A new era for genetic medicine

CERA’s Retinal Gene Therapy Unit co-lead Dr Tom Edwards welcomes the new policy and says it is a major advancement for genetic medicine and personalised healthcare in Australia.

“This decision is a major step forward for genetic medicine and personalised healthcare in Australia.

“For too long, people have been forced to weigh the benefits of genetic testing against the potential risk of discrimination.

“By removing this barrier, the government is supporting people to make empowered choices about their health, free from the fear of economic disadvantage.’’

Genetic testing can provide crucial insights for people living with IRDs that can lead to early interventions and access to cutting-edge therapies.

Identifying the specific genetic mutations causing these conditions allows for more targeted treatment approaches, increasing the chances of success and better outcomes for patients.

“For those with inherited retinal diseases, a genetic diagnosis can open the door to new therapies that were unimaginable a decade ago,’’ Dr Edwards says.

“It allows us to identify the most effective treatments and tailor them to an individual’s genetic makeup. Research in this area is moving rapidly, and knowing your genetic profile can make all the difference.”

However, while this policy change is a significant step forward, Dr Edwards believes it is just the beginning.

He says the next crucial step is for the Government to provide financial support for patients to access genetic testing, especially as more gene therapies become available.

“Without this support, many people may still find it difficult to take that first step towards a genetic diagnosis and the potential benefits it can unlock.

“If we want to fully realise the potential of gene therapy, we need to ensure genetic testing is accessible to all who need it, regardless of their financial situation.’’

Accelerating innovation

The ban on genetic discrimination also has broad implications for medical research – particularly for gene therapy in clinical trials.

CERA and its ophthalmic clinical trial centre, Cerulea Clinical Trials, are at the forefront of developing and testing new gene therapies that aim to prevent or reverse vision loss caused by IRDs.

Cerulea Clinical Trials is bringing cutting-edge research from the lab to real-world applications and is set to deliver new gene therapy trials for retinitis pigmentosa and Stargardt’s disease in the next year.

Cerulea CEO Michelle Gallaher says clinical trials are essential to bringing new treatments to patients, but to participate in a gene therapy trial, participants typically need to have undergone genetic testing to determine their eligibility. 

By reducing the discrimination and concern associated with genetic testing, the new policy could lead to increased participation in clinical trials. In turn, this will provide researchers with more robust data and accelerate the development of effective therapies for conditions which currently have limited options.  

Gallaher emphasises the importance of this policy change in enhancing Australia’s position in global ophthalmic research. 

 “This decision opens the door for more Australians to access genetic testing without fear of financial repercussions and treatment limitation, and that’s incredibly important,’’ she says. 

“By encouraging more people to take that first step and access genetic testing, we create a larger, more diverse pool of potential participants for clinical trials. This, in turn, helps bring more innovative ophthalmic trials to Australia, ensuring that Australians can access the latest gene therapies close to home.” 

Future for personalised medicine

Gallaher says the changes announced by the Government are a promising sign that Australia is committed to advancing personalised medicine and ensuring equitable access to cutting-edge healthcare.

“At CERA and Cerulea Clinical Trials, we are excited about the possibilities this new policy brings and are dedicated to continuing our work to develop innovative treatments that improve the lives of those with inherited eye diseases.

“By ensuring both policy protection and financial support, Australia can become a leader in making advanced genetic treatments a reality for everyone.”

Find out more about our gene therapy research.