Genetic Diversity
Building representative genomic resources
Many Australian communities are underrepresented or completely missing from genomics resources. This creates inequity in access to genomics medicine and its benefits. We are working to address this through an ambitious new program, OurDNA.
Supported by a $10 million Medical Research Future Fund grant, OurDNA is building comprehensive genomic resources that are more representative of Australia’s remarkable human diversity.
Developing culturally aligned participant information and education materials
A major barrier for many diverse communities to participate in genomic research is the lack of culturally appropriate participant information and explanatory materials.
To address this gap, we created culturally aligned and language-appropriate participant information and education resources for use in clinical and population genomics research in 10 languages that are a priority for genomics in Australia - Arabic, Dari, Farsi, Fijian, Hazaragi, Samoan, Tagalog, Tongan, Urdu, and Vietnamese.
Recommended by multicultural sector advisors and cross-cultural communication experts, the project took a best practice approach and worked closely with two translators per language, and consulted community members to ensure the materials are accessible to multicultural communities.
The materials are openly available under a Creative Commons licence for use by any program. These will be available through an interactive text compilation tool in the next months. We will also share our methodology to allow further languages to be added.
We thank Australian Genomics and the National Health and Medical Research Council for their support (Grant GNT2000001), as well as the many community members and clinical and research professionals who contributed their time to reviewing and providing feedback on these materials.
Project team and steering group
Maia Ambegaokar, Jessica Billimoria, Stuart Cantsilieris, Samantha Croy, Mary Ann Geronimo, Steven He, Jodie Ingles, Daniel G. MacArthur, Nicolas Ojeda Amador, Angela Pearce, Rune Pedersen, Shenei Penaia, Ebony Richardson, Rafal Shouly, Harshini Sivaraj, Bronwyn Terrill, Mary-Anne Young
Translators
Liaqat Amini, Selesele Mafi Asiata, Mahnaz Benam, Mehdi Gholizadeh, Mele Kainga Hausia, Loudeen Lam, Aila Lenard, Safaa Malaeb, Melba Marginson, Joji Mate, Tuan Nguyen, Tepola Raicebe, Huong Thi Mai Truong
Focus groups
We thank the Australian-Iranian Society of Victoria, Bakhtar Community Organisation, Federation of Ethnic Communities Councils of Australia (FECCA), Fijian Community Association Victoria, Pacific Connections, Philippine Community Council – NSW, Saba Group, Ane Fifita, Annette Terepo, Ayesha Bux, Bich Van Trinh, Ghazaleh Dashti, Jacinta Moala, Iana Ramos, John Le, Nafiseh Ghafournia, and Raza Hussainizada.
We also thank the CPG staff members who assisted with organising the focus groups including Caitlin Morrison, Elise Richards, Natasha Tamasese, Vera Howlett, and Vivian Bakiris.
Supporting Australian Indigenous communities
We are a proud and active member of the ALIGN and CONNECT consortia, national Indigenous-led efforts working to empower Aboriginal and Torres Strait Islander people in genomic medicine and research.
We provide technical leadership for the development of genomic data infrastructure for nationally consistent, culturally appropriate, and ethical storage, management, and sharing of genomic data to benefit Indigenous Australians. This has led to:
1,000+ participants whose whole-genome sequencing was supported by CPG for the PROPHECY Diabetes Multi-Omics Cohort Study - the largest Australian Indigenous cohort sequenced to date
1,000+ prospective Indigenous Australians to be recruited from New South Wales communities in future efforts led by Professor Alex Brown, an internationally leading Aboriginal clinician and researcher at the Telethon Kids Institute and Director of the National Centre of Indigenous Genomics at the Australian National University.