Genomic testing plays a critical role in reaching an accurate diagnosis and guiding treatment planning for people with rare and less common cancers. By identifying the specific genomic variations driving a person’s cancer, precision medicine approaches can match people with therapies tailored to their unique tumour profile. This targeted strategy has the potential to dramatically improve outcomes.
The challenge
Despite the immense potential of precision oncology, access to genomic testing remains a significant challenge for many people in Australia. The high cost of tests can put them out of reach for most people. Lack of reimbursement and limited testing infrastructure, particularly outside major cancer centres, further compound the access barriers.
Government funding for genomic research and translational studies is advancing research and access to genetic testing for people living with rare cancers in Australia. However, there remains a serious challenge in moving research into mainstream clinical practice.
Addressing the issue
Australia urgently needs a nationally coordinated genomics strategy, to rapidly increase genomic testing capacity, reporting infrastructure, and equitable access across all states and territories. This strategy should include a robust reimbursement framework for genomic tests, targeted investments in expanding testing facilities and workforce, and clear referral pathways for timely testing at diagnosis.
What RCA is doing about it
We remain a leading voice on genomics in cancer care and the transformative potential of precision oncology for people with rare cancers, following through on our recommendations in Rarefication: Personalised Medicine in the Genomic Revolution.
Partnering with Australian Genomics, we brought together patients, thought leaders, researchers, clinicians, policymakers, industry and other experts in late 2024 for a three-part roundtable series. We discussed the opportunities, barriers and challenges in implementing genomic-led care in Australia, outlined in Advancing genomic-led cancer care in Australia.
Through our partnership with Cancer Australia, we have shaped the Framework for Genomics in Cancer Control, a new framework developed to accelerate the use of genetic and genomic medicine in cancer care. The Framework recognises people with rare and less common cancers as a priority population given their high unmet clinical need and the transformative potential of genomic medicine in their diagnosis and treatment.
In 2024, we supported two vital precision oncology programs in securing further funding. The Government committed $112.6 million over three years to continue the Zero Childhood Cancer (ZERO) program, enabling nationwide genomic analysis for enrolled children to guide treatment. An additional $30.8 million was announced to expand Omico’s PrOSPeCT program, Australia’s largest cancer genomics initiative that provides genomic testing to match patients with rare or advanced cancers to treatments and clinical trials.
What we want
We want every person diagnosed with a rare, less common or advanced cancer in Australia to have access to equitable and subsidised comprehensive genomic profiling from the time of diagnosis.
Genomics Australia and Cancer Australia should work with the Australian Government Department of Health and Aged Care, and State and Territory governments to deliver a National Genomics Strategy and National Framework for Genomics in Cancer Control that:
- delivers comprehensive and cost-effective genomic profiling as standard of care, starting with patients who have the highest unmet need; and
- equips and supports all health systems to introduce genomic profiling and matched therapies as a coordinated part of cancer pathways, including the smooth transition of comprehensive genomic and functional studies methods into clinical practice.
Advancing Genomic-led care in Australia, the summary from our Genomics Policy Roundtable Series in late 2024, sets out five areas for action:
- Foster collaboration and coordination within and across stakeholder groups to advocate for, progress and implement a national approach to cancer genomics in Australia.
- Develop a national approach to standardise access to genomic profiling for cancer patients, starting with those most in need: A national model of care should be established to ensure equitable access to genomic profiling, prioritising patients with rare, less common cancer and advanced cancers, those living rurally or remotely, and Aboriginal and Torres Strait Islander communities.
- Invest in genomic infrastructure and technology: Investment is needed to increase Australia’s genomic infrastructure and capacity, including the development of a National Genomic Data Registry for Cancer, to support the standardised and optimised use and reuse of genomic data for cancer care and research.
- Prepare the workforce for genomic medicine: Workforce preparation is critical, with a focus on upskilling cancer healthcare professionals in the use and interpretation of genomics through training and education and workforce development and planning to ensure a pipeline of future genomic healthcare professionals.
- Implement, monitor, and evaluate for continuous improvement.
