“There’s no representation”: A qualitative study of attitudes and motivations towards genomic research among South Asian Australians

Abstract People of South Asian ancestry represent approximately up around 25% of the world’s population, yet constitute less than 2% of global genomic databases, limiting our ability to provide equitable genomic healthcare for this population. The urgent need to improve representation of diverse populations in genomic research is widely recognised as an area of priority among the genetics community. Community engagement is a key first step informing tailored recruitment strategies and genomic research participation. This study aimed to understand prior experience with, and attitudes towards genomic research within the context of cardiovascular disease risk among people of South Asian ancestry residing in Queensland, Australia. Semi-structured focus groups were conducted between April and August 2023 with 60 individuals meeting the study eligibility criteria. Focus group were recorded, transcribed verbatim and reflexive thematic analysis conducted. Three themes were developed: “Genomics Research: It’s about us”, “Cultural Connections” and “Trust and Relationship Building”. While positive views regarding genomic research were identified, very few participants had taken part in research, primarily due to lack of researcher engagement in genomic studies. Fear of possible stigma and discrimination arising from genomic data were significant barriers genomic research engagement, which was multi-faceted and stemmed from within the community and lived experiences of discrimination in Australia. Community partnership and building trust were primary facilitators to enhancing research participation. Findings will have implications to community engagement in genomic research and will inform the development of recruitment protocol for genomic research within South Asian communities in Australia.