Evidence map›Paper›PMID 42168349›Full record

ArticleEuropean journal of human genetics : EJHG2026

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

Vaishnavi Nathan, Heena Akbar, Aideen McInerney-Leo, Deborah Gilroy, Anjali Henders, Reema Naresh, Nahid Choudhury, Maleeha Waqar, Sonia Shah, Tatiane Yanes and 1 more

Erratum issuedAbstract read
In one paragraph

Article in European journal of human genetics : EJHG, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

11 authors.

Vaishnavi NathanFrazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia.
Heena AkbarSchool of Public Health, Faculty of Health, Medicine and Behavioural Science, The University of Queensland, Brisbane, QLD, Australia.ORCID http://orcid.org/0000-0002-0630-3032
Aideen McInerney-LeoFrazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia.
Deborah GilroyInstitute for Molecular Biosciences, University of Queensland, Brisbane, QLD, Australia.
Anjali HendersInstitute for Molecular Biosciences, University of Queensland, Brisbane, QLD, Australia.
Reema NareshBrisbane Northside Fiji Senior Citizens, Brisbane, QLD, Australia.
Nahid ChoudhuryMetro North Mental Health, School of Health Sciences, Department of Nursing and Allied Health, Swinburne University of Technology, Melbourne, VIC, Australia.
Maleeha WaqarSchool of Biomedical Sciences, The University of Queensland, Brisbane, QLD, Australia.ORCID http://orcid.org/0000-0002-9581-7528
Sonia Shah *Institute for Molecular Biosciences, University of Queensland, Brisbane, QLD, Australia. s.shah@uq.edu.au.
Tatiane Yanes *Frazer Institute, The University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia. t.yanes@uq.edu.au.ORCID http://orcid.org/0000-0002-3905-3025
South Asian Genes and Health in Australia (SAGHA) research team

Funding

Department of Health | National Health and Medical Research Council (NHMRC) 2009136Department of Health | National Health and Medical Research Council (NHMRC) 2015961
6 · The paper itself

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.

Indexed as

Genetic ResearchGenomicsMotivationSouth Asian PeopleAdultAustraliaFemaleHumansMaleMiddle AgedPatient ParticipationQualitative Research

Identifiers

PMID42168349
PMCPMC13424584

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.