0202510020002
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The Prioritising Aboriginal Genomics (in NSW) through Engagement and Skills (PAGES) project Description: Genomics or precision medicine is the gold standard treatment for many cancers. The Prioritising Aboriginal Genomics (in New South Wales, Australia) through Engagement and Skills (PAGES) project will chart a pathway to clinical genomics for Aboriginal Australians. It builds upon long- standing trusted relationships with Aboriginal communities in New South Wales (Australia), partners scientific and Aboriginal research leadership, and applies a co-design process working side-by-side with communities. The PAGES study was co-designed 'with the community, for the community'
STARDIT ID:
STARDIT ID:
0202510020002
Dates
State ongoing
Start 2023-09-02
Form updated 2026-07-22
Location
New South Wales, Australia
Aims
building knowledge about precision medicine and cancer
training Aboriginal people as pathology technicians and genetic counsellors
And we are collecting saliva samples from 300 Aboriginal adults in New South Wales, Australia
By collecting DNA samples, help make genomics more precise for Aboriginal people in NSW
Aboriginal people will know more about genomics and how it can help improve cancer outcomes
Increased number of Aboriginal people working in genomics
more precise and better treatments for Aboriginal people
Category
research
Inputs
organisation
Co-design Health Research & Innovation (link)
Task: Supporting the PAGES project
Compensation: volunteer
organisation
Science for All (link)
Task: Supporting with public reporting of the project using STARDIT, supporting with peer reviewed publications
Compensation: volunteer
Ethics approver
Aboriginal Health & Medical Research Council (AH&MRC) Human Research Ethics Committee — AH&MRC 2588/26. Conditional approval ID: AH&MRC 2588/26
Outputs and impacts
publication/report/document
State: Completed
Genomics and inclusion of Indigenous peoples in high income countries (link)
publication/report/document
State: Completed
A pathway to precision medicine for Aboriginal Australians: a study protocol (link)
Related STARDIT report here: https://stardit.wikimedia.org.au/wiki/0202111150357
other
State: Completed
First cohort of Aboriginal pathology technicians trained (Certificate III in Pathology Collection) — Aim 1
Aim 1 (workforce development) has existing ethics approval. Seven Aboriginal people graduated from the first offering of the Certificate III in Pathology Collection in December 2025, building local capacity to collect samples for the project and opening pathways to further training (e.g. genetic counselling).
other
State: Completed
Co-designed participant resources and integrated Participant Information Sheet and Consent Form (link)
Plain-language resources developed with the community, including an introductory information sheet and video, a brochure and animated videos (with Aboriginal voiceover), and an integrated PIS and consent form reviewed and revised with PAGES Consumer User Panel (CUP) members.
other
State: Completed
Community consultation and support survey
An anonymous survey run by the local ACCHO and Local Aboriginal Land Council established community support before letters of support were provided (51 respondents; all agreed collecting DNA samples was a good idea). Co-design was conducted across multiple face-to-face sessions over 18 months using the CHRI Model of Co-design.
other
State: Ongoing
Ongoing community engagement and updates (link)
Regular updates shared with the community throughout the project via plain-language summaries, videos, social media and the project website, with the PAGES CUP providing continuing cultural governance and holding decision-making authority over cultural safety, data governance and community accountability.
other
State: Prospective
Collection of saliva samples from 300 Aboriginal community members — Aim 3
To be led by the Aboriginal pathology technicians trained in Aim 1. No names or personal information are collected apart from sex and age range. Awaiting the conditions of AH&MRC 2588/26 being met.
other
State: Prospective
Genomic sequencing, data analysis and aggregated "look-up table" of genetic variants — Aim 4 (link)
Sequencing and analysis led by the Aboriginal PhD scholar (from Aim 1), aggregating variants from all participants into a single, truly anonymous "look-up table" for clinical use. Individual-level samples and files are to be destroyed. The PAGES CUP holds authority over how the look-up table is stored, accessed and used.
other
State: Prospective
Genomic data framework and training resources — Aim 5 (link)
A genomic data framework and training resources enabling the look-up table to be used for clinical purposes.
other
State: Prospective
Post-research data sovereignty plan (led by the PAGES CUP) (link)
The PAGES Consumer User Panel will lead development of a data sovereignty plan, including a formal approval process for access to, and use of, the look-up table.
STARDIT report information
STARDIT report authors
Jack Nunn
0000-0003-0316-3254
0000-0003-0316-3254