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

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.