Skip to content
  • About
    • What we do
    • Our history
    • Our team
    • Our committees
    • Our partners
    • About genomics
  • Services
    • What we offer
    • Research we’re supporting
  • Tools & resources
    • Search all tools & resources
    • Research ethics & governance
    • Consent & patient support materials
    • Evaluating genomic research & translation
    • Data governance
    • Access our datasets
    • Data capture & standardisation
    • Data analysis & interpretation
    • Workforce education
    • Our publications
    • Our submissions
  • Our project areas
    • Our project areas
    • Genomic information management
    • Clinical genomic practice
    • Genomic literacy, workforce & training
    • Indigenous genomic priorities
    • Genomic diagnostics
    • Evaluating genomic research & translation
    • Australian health system policy & practice
    • Involvement & engagement
  • News & events
    • News
    • Events
    • Personal stories
    • Search news & events
  • Connect with us
Family with two young children

Development of culturally-aligned and language-appropriate participant information and education resources for Australian ethnic minority ancestry groups under-represented in clinical and population genomics research

Home Our project areas Genomic implementation projects 2022 Development of culturally-aligned and…

Summary

Despite Australians’ very diverse ancestry backgrounds, genomics research both in Australia and internationally suffers from a lack of diversity in research cohorts and reference datasets. Unless active steps are taken to address this, current rapid advances in genetic medicine will not benefit Culturally and Linguistically Diverse (CALD) Australians. One obstacle is the lack of appropriate explanatory materials. Many existing English-language explanations of genomic research are hard for lay people to understand and very few translations into other languages have been created. 

This project, led by Prof Daniel MacArthur from the Centre for Population Genomics (CPG) and Ms Mary-Anne Young from the Kinghorn Centre for Clinical Genomics (KCCG), will produce a core set of participant information and education materials specifically related to consent for genomic research, in plain English. The materials will subsequently be translated into ten languages (Arabic, Dari, Farsi, Fijian, Hazaragi, Samoan, Tagalog, Tongan, Urdu, and Vietnamese). The resources will be presented online in text versions with audio clips, and will be made openly available to other genomic research programs in Australia. In addition, the project will share reproducible, ethnographically-informed approaches to creating and translating genomics participant information in multiple languages.

Project Leads

Professor Daniel MacArthur

Professor Daniel MacArthur

Centre for Population Genomics (CPG)
Garvan Institute / Murdoch Children’s Research Institute

Ms Mary-Anne Young

Ms Mary-Anne Young

Kinghorn Centre for Clinical Genomics (KCCG)
Garvan Institute


More projects

Indications for pharmacogenomic testing in Australia

Building genomic knowledge in partnership with Indigenous communities and health services

Improving diagnostic pathways for rare diseases in regional Australia

Connect with us

(03) 9936 6345
info@australiangenomics.org.au
50 Flemington Road, Parkville
Victoria 3052 Australia

In the spirit of reconciliation Australian Genomics acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

To stay informed about our work, sign up to our newsletter

Subscribe

Quicklinks

  • Home
  • What we do
  • What we offer
  • Tools & resources
  • Our publications
  • Our project areas
  • Research we’re supporting
  • Our team

Privacy

  • We follow the Australian Privacy Principles
  • General privacy policy
  • Website privacy policies
  • Terms & conditions

Website by Blueboat.