The power of precision medicine
Help change the genomic health sector with the Indigenous Genomics Health Equity project.
Making genomic care equitable, accessible – and culturally safe
Genomic care is a highway to precision medicine. But Mob in Victoria don’t get equal access – and that needs to change.
The Indigenous Genomics Health Equity project, led by Aboriginal staff at VACCHO, aims to identify and address the gaps in genomic health services for Mob.
As part of the project, we want to yarn with Community members with lived experience of genomics care – and/or Aboriginal Health providers.
With your help we will:
• Find the wins and challenges in accessing genomic services
• Help address issues with cultural safety and racism in genomics
• Create recommendations for more equitable genomic care
• Pave the way for equitable health outcomes for Aboriginal and Torres Strait Islander people in genomic care
What is genomic care anyway?
Genomic care – which includes genetic screening – is a way to learn more about your health and potential risks. Doctors create a map of your genes to:
• Find rare diseases or genetic disorders
• Help prevent illness in the future
• Treat diseases in the way that suits your body best
In other words, it has the potential to reshape how we prevent, diagnose, treat, and monitor illness. This project aims to understand and explain Mob’s access to this helpful care – so we can create healthier futures for Community.
To learn more, watch this helpful video!
Meet your lead researcher
Sara Alden is a proud Aboriginal woman and the Strategic Project Lead of the Indigenous Genomics Health Equity project at VACCHO.
As a descendant of Stolen Generation, she brings a deep understanding of resilience and change. Sara’s work focuses on advocating for the individual and systemic needs of Aboriginal and Torres Strait Islander people.
With diverse experience in public sector and community service roles – and currently completing degrees in Laws and Sociology – she connects various bodies of works across sectors to address complex barriers in health equity and genomics medicine.
Have you experienced genomic care? Yarn with us
This project will help make genomic care more accessible, equitable, and culturally safe for Mob. But we can’t do it without you.
Sessions are quick and easy, and online or in person. All your responses are confidential. And we’re committed to providing a culturally safe space where your voice is heard and valued.
Here’s who we’d love to hear from:
Community with lived experience of genomic care
If you’ve received genomic care in the past – or cared for a child who has – we’d love to hear from you.
Your experience can shape how genomic care is delivered in the future. By sharing your story, you’re taking control and helping build a system that truly supports Aboriginal and Torres Strait Islander people.
Aboriginal health providers
If you’ve been involved with Community receiving genomic care, we’d love your insights – the challenges, the wins and the gaps.
Your knowledge can guide us in shaping a system that respects Culture and better serves Aboriginal and Torres Strait Islander people.
Ready to help shape a system that better serves Mob?
Frequently Asked Questions
Got questions about this project? Find answers here.
What is the Indigenous Genomics Health Equity Project?
The Indigenous Genomics Health Equity Project aims to identify and address health equity gaps in genomic healthcare for Aboriginal and Torres Strait Islander communities.
VACCHO recognises this priority is about health equity. It’s about helping advance genomics to be Indigenous led – and centred on our Members’ and Communities’ voices. We recognise genomic care is not just precision medicine, but innovative medicine, and we seek to ensure the health gap doesn’t widen as this healthcare progresses.
What is genomics, and why is it important?
Genomics is the study of genes and their interactions. It helps us understand inherited traits, risks for certain diseases, and how to provide more personalised healthcare.
We know that Aboriginal and Torres Strait Islander people experience a higher rate of diseases like diabetes and heart disease, and genomics has the potential to improve health outcomes through tailored healthcare solutions.
How does the project engage with Aboriginal Community Controlled Organisations (ACCOs)?
VACCHO works closely with Aboriginal Community Controlled Organisations to ensure the project is co-designed and reflects Communities’ needs. We do this by conducting engagements, collaborative data collection, and ensuring ACCOs have opportunities to contribute to decision-making and project outcomes.
How is the project culturally safe?
Cultural safety is a core value of the project. We work within ethical guidelines, overseen by our Human Research Ethics Committee (HREC) approval via the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS), approved in July 2024.
The project works with Aboriginal and Torres Strait Islander stakeholders such as the Australian Alliance for Indigenous Genomics (ALIGN) and the National Centre for Indigenous Genomics (NCIG) at the Australian National University (ANU) to ensure research practices align with Cultural values, respect, and Community priorities.
How can Community benefit from genomics?
Genomics can provide insights into inherited health conditions, improve early diagnosis, and create opportunities for targeted treatments. Through this project, we aim to increase access to these benefits for Aboriginal and Torres Strait Islander people by understanding where the gaps are to equal access.
How is data collected and managed in the project?
Each participant owns their information – thanks to the Indigenous Data Governance (IDG) and Sovereignty (IDS). VACCHO is a custodian of that data, and each individual owns rights to it.
All data is managed transparently and securely, following strict ethical and privacy guidelines to protect participants. We are proud to have obtained formal ethical approval under a Human Rights Ethical Committee (REC-0316), which is overseen by The Australian Institute of Aboriginal And Torres Strait Islander Studies (AIATSIS).
How can I get involved in the project?
We’re so happy you asked! If you’re an Aboriginal and/or Torres Strait Islander person who’s experienced genomic care – or an Aboriginal health provider who’s been involved with a patient who has – we’d love to hear from you.
Simply fill in this Microsoft Form with your contact details – it’ll only take 5 minutes.
What are the next steps for the project?
We are currently analysing data and developing recommendations to ensure equitable access to genomic healthcare. We will continue engaging with ACCOs, Community members, and stakeholders to implement findings as a team.
Who are our project partners?
The Indigenous Genomics Health Equity Project proudly partners with experts in genomic care: Melbourne Genomic Health Alliance (MGHA), Walter and Eliza Hall Institute of Medical Research (WEHI), and the Australian Alliance for Indigenous Genomics (ALIGN).