Despite Australians’ very diverse ancestry backgrounds, genomics research in Australia suffers from a lack of diversity in research cohorts and reference datasets. Unless active steps are taken to address this, current rapid advances in genomic medicine will not benefit many CALD Australians. A basic obstacle is the lack of appropriate explanatory materials. This project has implemented and documented a best-practice approach to creating culturally-aligned and language-appropriate participant information and education resources for use in clinical and population genomics research.
We have produced a core set of materials in English and ten languages that are a priority for genomics in Australia (Arabic, Dari, Farsi, Fijian, Hazaragi, Samoan, Tagalog, Tongan, Urdu, and Vietnamese). Development included consultation with experts, working closely with translators and gathering feedback from bilingual community members. We have made the materials 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.
Participant information and resource materials:
(currently available in PDF and Word Document; text builder coming soon)
Vietnamese (PDF) Vietnamese (DOC)
Arabic audio (12 tracks). Dari audio (12 tracks)
Farsi audio (2 tracks). Fijian audio (1 track)
Hazaragi audio (12 tracks). Samoan audio (6 tracks)
Tagalog audio (3 tracks). Tongan audio (12 tracks)
Urdu audio (12 tracks). Vietnamese audio (12 tracks)
Acknowledgements:
This project has been supported by Australian Genomics and the National Health and Medical Research Council (Grant GNT2000001). Thanks to 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
Thank you to 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.
Thank you also to the CPG staff members who assisted with organising the focus groups including Caitlin Morrison, Elise Richards, Natasha Tamasese, Vera Howlett, and Vivian Bakiris.