“There’s no representation”: a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians

Abstract People of South Asian ancestry represent approximately 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 to 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 ( n  = 60 individuals), which were recorded, transcribed verbatim and analysed using inductive and deductive approaches. Three thematic categories were developed: ‘ Engagement with Genomic Research ’, ‘ Cultural Connections ’ and ‘ Trust and Relationship Building ’. While participants expressed positive views toward genomic research, only a few individuals had previously participated, primarily due to a lack of awareness and engagement from researchers in genomic studies. Fear of stigma and discrimination was a significant determinant towards genomic research engagement, which was multi-faceted and rooted in both community-level concerns and lived experiences of racial discrimination in Australia. Conversely, community partnership and establishing trustworthiness were critical facilitators for enhancing participation in genomic research. These findings will have important implications for designing culturally responsive community engagement strategies and will inform the development of recruitment protocols tailored to South Asian communities in Australia.