A message from the Australian Health Genomics Commissioner - Tiffany Boughtwood
Welcome to the September edition of the Genomics Australia Networks newsletter.
On 1 July 2026, Genomics Australia celebrated its first anniversary, marking 12 months of collaboration, partnership and progress. As we reflect on this milestone, I am pleased to share some of the achievements we have reached together over the past year and the opportunities ahead as we continue to support the safe, equitable and effective use of genomics in health care.
Since Genomics Australia’s establishment, we have brought together hundreds of stakeholders through our networks, partnerships and the Advisory Council, strengthening connections across the sector and helping to advance the integration of genomics into health care across Australia.
This work has also included providing expert advice across government on issues of national significance, including support for new protections for Australians against the use of genetic information in life insurance. Other key priorities are also progressing, including work to improve access to personalised cancer care and supporting the delivery of genomics in a culturally safe and equitable way.
Looking ahead, the Hon Minister Mark Butler recently announced increased investment through the Medical Research Future Fund (MRFF), including $200 million over 4 years from 2027-28 for the Precision Health Research Program (PHRP). This investment will strengthen genomic health care and research, improve access to genetic testing and treatment, and help identify people at risk of developing disease earlier.
As we celebrate Genomics Australia's first year, I would also like to acknowledge the significant contribution of Renaye Lucchese. As General Manager, Renaye played a key role in establishing Genomics Australia and driving many of the achievements highlighted above. Renaye has accepted a position as Assistant Secretary in the Aged Care Workforce Branch within the Department of Health, Disability and Ageing. On behalf of Genomics Australia, I thank Renaye for her dedication, leadership and commitment, and wish her every success in her new role.
Following Renaye’s departure, Simon Cleverley will commence as General Manager on 19 October 2026. Simon joins Genomics Australia from his role as Assistant Secretary of the Digital Health Branch in the Medicare Benefits and Digital Health Division. He brings extensive experience in supporting national policy reforms across government, and I look forward to working with him as we continue to build on our achievements, strengthen our impact and advance our priority work.
As always, thank you for your continued partnership and commitment to advancing genomics in health care. I look forward to working with you as we build on this strong foundation and continue to improve health outcomes for all Australians.
All my best,
Tiff
Publication of the National Health Genomics Policy Framework and Implementation Plan 2026-2030
About the Framework
On 4 August 2026, the Health Ministers Meeting endorsed the National Health Genomics Policy Framework and Implementation Plan 2026-2030 (National Framework).
The National Framework sets a shared direction for integrating genomics into Australia’s health system and was jointly developed by the Australian Government and state and territory governments, with input from the Aboriginal and Torres Strait Islander Advisory Group on Health Genomics, consumers, communities, clinicians, researchers and industry.
The National Framework places people, families and communities at the centre of genomic care and is designed to guide national action to improve the prevention, diagnosis and treatment of disease.
It promotes culturally safe, inclusive and equitable care, recognises the rights, priorities and leadership of Aboriginal and Torres Strait Islander peoples, and supports the responsible use of genomic information. Together, these actions will help build public trust and ensure all Australians can benefit from advances in genomics.
You can now access the National Framework on the Department of Health, Disability and Ageing website.
Community Spotlight
Genomics Australia survey highlights public support for genomics in health care, with opportunities to build community understanding
At a glance
Genomics Australia commissioned a survey of 2,010 Australians to understand what people know about genomics, how they feel about using it in health care, and what would help them feel more confident about genomic data use.
The survey found:
- most people supported using genomics in health care, including to diagnose disease earlier, prevent disease, guide more personal care and understand genetic health risks.
- nearly three in four people said they knew little or nothing about genomics, and only four per cent could explain genomics in their own words.
- people had strong concerns about privacy and data safety, including who could access their genomic data, how it would be protected and whether it could affect family members.
- people were generally comfortable with genomic data being used for helpful purposes, such as health research, better care for themselves and their families, and new treatments.
- people also raised concerns about cost, low public awareness, GP knowledge, rural access, and cultural or language barriers.
The findings show the need for clear, trusted information about genomics, fair access to care, and simple messages about how genomic data is kept private and safe.
These findings provide an important foundation for future communication, engagement and education activities, helping to ensure Australians have access to clear and trusted information about genomics and its use in health care.
A public-facing summary report will be published on the Genomics Australia website soon and Genomics Australia will continue to engage with the community and repeat the survey over time to track how perceptions evolve.
Project Spotlight
Research guides Genomics Australia's approach to trusted genomics information
What we found
Genomics Australia engaged a research provider to learn what genomics information and resources are available for the public. The aim was to help people find reliable information so they can make decisions about their health care.
The research looked at existing genomics resources and checked to see if they were easy to find and understand, and useful for different people and communities.
Almost 1,700 people shared feedback on selected resources through:
- a survey.
- focus groups.
- interviews.
- an online discussion board.
Feedback was from members of the public, patients, Aboriginal and Torres Strait Islander peoples, people from culturally and linguistically diverse communities, and people with disability.
The research found:
- most people do not look for genomics information unless they have a reason to do so.
- when people do search for information, they may find sources that are not always reliable.
- many people wanted clear explanations, simple language and information that starts with the basics before learning more detailed topics.
- people trusted information from health professionals and government organisations.
- there was support for making information available on a website.
The research found that more information was needed on some topics. There was also a need for translated information for culturally and linguistically diverse communities and more accessible information for people with disability.
The findings are helping to guide the resources and links published on the Genomics Australia website.
Genomics Australia will publish a summary report on the website soon.
International Spotlight
Meeting with New Zealand Ministry of Health
In summary
Earlier this year, Genomics Australia and New Zealand's Ministry of Health signed a Memorandum of Understanding (MoU). This agreement helps the two countries work together on using genomics to improve health care. This includes sharing knowledge and learning from each other.
In August, the Australian Health Genomics Commissioner was welcomed by representatives of New Zealand’s Ministry of Health and Health New Zealand to discuss the use of genomics across both countries. We also workshopped how we can work together, how to manage Indigenous data carefully and ways to plan future work.
Upcoming Webinar
N-of-1 therapies
What to expect
This webinar will explore N-of-1 therapies (treatments developed for a single individual) and feature speakers from government, industry, patients and the research sector.
This multidisciplinary webinar will explore the complexities Australia faces in navigating the N-of-1 therapy landscape, including:
- N-of-1 access and expectations of families.
- considerations for clinical decision making.
- the need for regulatory oversight and reporting.
- the importance of not stifling Australian innovation.
When — Join us on Thursday 22 October 2026, from 1:30pm – 3:00pm (AEDST). Invitations will be sent out to Network members shortly.
Get Involved
We’d love to hear from you
Whether you have ideas for future newsletter content, suggestions for network activities or webinar topics, or would simply like to learn more about our work, we'd love to hear from you.
- Share your ideas and feedback at genomicsnetworks@health.gov.au.
- Visit the Genomics Australia website to learn more about our work and priorities.