Towards an Inclusive Genomics

This is an unpublished, non-peer-reviewed white paper describing a review of the literature supporting the intended community engagement work of the Centre for Population Genomics (CPG).

CPG aims to build a genomic reference database that represents the diversity of the Australian population. As existing large reference databases, such as gnomAD, contain mainly genomic data from people of European and American descent, many Australians from non-European and non-American ancestry groups are less able to benefit from genomic medicine. CPG’s community engagement and research work will seek to lower barriers and facilitate participation by first gaining an understanding of the needs of the community in taking part in the project. The literature review covers topics relating to the participation of ethnic minorities in genomics research including trust-building, developing culturally appropriate project materials, consent, incentives, biosampling, and community-based approaches in efforts to increase representation.

The review concludes that through an ethnographic, participatory, and design-centred approach that emphasises understanding, collaboration and action, CPG is working towards developing a methodology that will tackle the current challenge of the underrepresentation of minority ancestry groups in genomic databases and genomic research generally. This work will lay the groundwork for an inclusive genomics that secures a future where all Australians will be able to enjoy the benefit of developments in genomic medicine.