"There's no representation": a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians.

Nathan, V; Akbar, H; McInerney-Leo, A; Gilroy, D; Henders, A; Naresh, R; Choudhury, N; Waqar, M; Shah, S; Yanes, T; South Asian Genes and Health in Australia (SAGHA) research team,

"There's no representation": a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians.

Nathan, V Akbar, H McInerney-Leo, A Gilroy, D Henders, A Naresh, R Choudhury, N Waqar, M Shah, S Yanes, T South Asian Genes and Health in Australia (SAGHA) research team,

Permalink

Publisher:: Springer Nature
Publication Type:: Journal Article
Citation:: Eur J Hum Genet, 2026, 34, (8), pp. 1087-1096
Issue Date:: 2026-08

Open Access

Copyright Clearance Process

Recently Added
In Progress
Open Access

This item is open access.

Adobe PDF

Download Published versionAdobe PDF (1.02 MB)

View on publisher's site

View statistics

Full metadata record

Field	Value	Language
dc.contributor.author	Nathan, V
dc.contributor.author	Akbar, H
dc.contributor.author	McInerney-Leo, A
dc.contributor.author	Gilroy, D
dc.contributor.author	Henders, A
dc.contributor.author	Naresh, R
dc.contributor.author	Choudhury, N
dc.contributor.author	Waqar, M
dc.contributor.author	Shah, S
dc.contributor.author	Yanes, T
dc.contributor.author	South Asian Genes and Health in Australia (SAGHA) research team,
dc.date.accessioned	2026-09-24T05:10:46Z
dc.date.available	2026-04-28
dc.date.available	2026-09-24T05:10:46Z
dc.date.issued	2026-08
dc.identifier.citation	Eur J Hum Genet, 2026, 34, (8), pp. 1087-1096
dc.identifier.issn	1018-4813
dc.identifier.issn	1476-5438
dc.identifier.uri	http://hdl.handle.net/10453/196210
dc.description.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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Springer Nature
dc.relation.ispartof	Eur J Hum Genet
dc.relation.isbasedon	10.1038/s41431-026-02129-3
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	0604 Genetics, 1103 Clinical Sciences
dc.subject.classification	Genetics & Heredity
dc.subject.classification	3105 Genetics
dc.subject.classification	3202 Clinical sciences
dc.subject.mesh	Adult
dc.subject.mesh	Female
dc.subject.mesh	Humans
dc.subject.mesh	Male
dc.subject.mesh	Middle Aged
dc.subject.mesh	Australia
dc.subject.mesh	Genetic Research
dc.subject.mesh	Genomics
dc.subject.mesh	Motivation
dc.subject.mesh	Qualitative Research
dc.subject.mesh	South Asian People
dc.subject.mesh	Patient Participation
dc.subject.mesh	Humans
dc.subject.mesh	Motivation
dc.subject.mesh	Genetic Research
dc.subject.mesh	Genomics
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Adult
dc.subject.mesh	Middle Aged
dc.subject.mesh	Patient Participation
dc.subject.mesh	Australia
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	South Asian People
dc.subject.mesh	Adult
dc.subject.mesh	Female
dc.subject.mesh	Humans
dc.subject.mesh	Male
dc.subject.mesh	Middle Aged
dc.subject.mesh	Australia
dc.subject.mesh	Genetic Research
dc.subject.mesh	Genomics
dc.subject.mesh	Motivation
dc.subject.mesh	Qualitative Research
dc.subject.mesh	South Asian People
dc.subject.mesh	Patient Participation
dc.title	"There's no representation": a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians.
dc.type	Journal Article
utslib.citation.volume	34
utslib.location.activity	England
utslib.for	0604 Genetics
utslib.for	1103 Clinical Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2026-09-24T05:10:44Z
pubs.issue	8
pubs.publication-status	Published
pubs.volume	34
utslib.citation.issue	8

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.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/196210