From Research to Reform: Dr Jane Tiller’s Fight to End Genetic Discrimination
In 2024, Dr Jane Tiller received the Advocacy Award sponsored by AbbVie, recognising her outstanding efforts to raise awareness and drive meaningful change in the health and medical research sector.
The award celebrates advocates whose work strengthens community understanding of health and medical research and inspires action that benefits communities across Australia.
For Dr Tiller, a lawyer, genetic counsellor and public health researcher at Monash University, advocacy has been central to ensuring that genomic research can deliver its full potential for improving health outcomes.
Genomic research holds enormous promise for identifying genetic causes of disease and enabling earlier prevention and treatment. However, Dr Tiller recognised that fears about genetic discrimination in life insurance were preventing many Australians from participating in research or seeking potentially life-saving genetic testing.
In Australia, life insurers have historically been allowed to use genetic test results to deny coverage or increase premiums. This created a significant barrier to genomic research and clinical care.
Building the Case for Reform
Determined to address this issue, Dr Tiller began advocating for reform almost a decade ago.
In 2016 she co-founded the Australian Genetic Non-Discrimination Working Group, bringing together researchers, clinicians and policy experts concerned about the use of genetic information in insurance. She later led the group’s submissions to a Parliamentary Inquiry into the life insurance industry, helping place genetic discrimination firmly on the national policy agenda.
The Inquiry’s 2018 report recommended an urgent ban on genetic discrimination in life insurance.
Dr Tiller’s advocacy also helped drive the introduction of a partial industry moratorium in 2019, which limited how genetic test results could be used by insurers. While an important step, her research showed that the moratorium still left many Australians hesitant to participate in genomic research.
Over the following years, Dr Tiller continued to push for stronger protections. She led a Commonwealth-funded research project from 2020–2023, examining the impact of genetic discrimination on research participation and developing policy recommendations for reform.
Her research findings, viewed more than 15,000 times by policymakers, researchers and stakeholders, helped spark renewed national debate on the issue.
Turning Advocacy into Legislative Change
Dr Tiller’s work intensified in 2023 and 2024, as she engaged directly with policymakers, researchers and community groups to build support for legislative reform.
Her advocacy helped lead to a national consultation process that attracted more than 1,000 submissions, with stakeholders from across the health and research sectors calling for stronger protections against genetic discrimination.
The momentum generated by this campaign has since translated into major policy progress.
“Since receiving the advocacy award for working towards a ban on genetic discrimination in life insurance, the government has actually introduced legislation,” Dr Tiller said.
“It’s huge progress.”
Beyond policy reform, Dr Tiller has worked to mobilise an entire network of researchers, clinicians and consumer groups to advocate for change. She created guidance documents, supported organisations in preparing submissions and helped facilitate community engagement through a national online campaign.
Her leadership demonstrates how research-informed advocacy can drive tangible improvements in both public policy and health outcomes.
Recognition that Amplifies Impact
Receiving the Research Australia Advocacy Award has also helped strengthen the visibility of this work and the broader importance of connecting research with public policy.
“The awards are prestigious and highly visible, especially in the advocacy and government relations space,” Dr Tiller said.
“I received several comments of congratulations from parliamentarians, and even made it into a speech in Hansard. It definitely helped to raise my profile and create stronger connections for my advocacy work.”
For Dr Tiller, recognition plays a vital role in bringing research into broader public conversation.
“Connecting health and medical researchers with the community more broadly is critical,” she said.
“It helps showcase the work in a context outside the narrow sphere of academia or clinical practice. In the advocacy space, it highlights critical issues that require urgent attention.”
2026 Research Australia Awards
As nominations open for the 2026 Research Australia Awards, Dr Tiller’s story highlights how advocacy, research and collaboration can work together to shape policy and improve the future of health care in Australia.