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

“There’s no representation”: A qualitative study of attitudes and motivations towards genomic research among South Asian Australians | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article “There’s no representation”: A qualitative study of attitudes and motivations towards genomic research among South Asian Australians Tatiane Yanes, Vaishnavi Nathan, Heena Akbar, McInerney-Leo Aideen, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6707183/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 10 You are reading this latest preprint version 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. Health sciences/Medical research/Genetics research Scientific community and society/Social sciences/Psychology Figures Figure 1 Introduction While the benefits of genomic testing in healthcare are well recognised, there are limitations to this technology that can exacerbate health inequalities for individuals of non-European ancestry ( 1 , 2 ). Specifically, interpretation of test results relies on established genomic databases that are predominantly comprised of data from European populations ( 1 , 2 ). Differences in variant frequencies and effect sizes, as well as missed variants in underrepresented populations can result in less equitable testing for those of non-European ancestry. For example, compared to people of European ancestry, those of non-European ancestry are more likely to receive non-clinically significant results from genomic testing, such as variants not being identified or due to variants of unknown significance. The urgent need to improve representation of diverse populations in genomic research has been widely recognised as an area of priority by the genetics community ( 3 – 5 ). Several initiatives are currently underway to addresses this pressing issue ( 6 – 8 ). While international efforts towards inclusive genomic research have made significant strides, the overall representation of diverse groups in genomic datasets continues to be low ( 2 , 9 ). The lack of progress has been attributed to a lag in capacity-building, funding restraints, limited employment of diverse research personnel and relationship-building with communities, and inadequate targeted recruitment efforts tailored to specific populations ( 10 , 11 ). Unlike countries such as the US, UK and New Zealand, such efforts to increase diversity in genomics research are lagging in Australia, hampered further by the lack of standardised approaches for capturing ancestry information within the healthcare system. South Asians (ancestry from India, Pakistan, Bangladesh, Sri Lanka, Nepal, and Bhutan) makeup the largest, non-European overseas-born population in Australia ( 12 ). Many of the contemporary South Asian populations originate from a few founding groups that have maintained distinct identities through centuries of endogamy ( 13 ) (i.e., marriages that are restricted within a particular South Asian ethnic group), a practice often maintained amongst diasporas. This has resulted in greater rates of homozygosity ( 14 ) and distinct disease-causing mutations with amplified frequencies within specific South Asian ethnic groups ( 13 ). Large South Asian genomic databases would therefore allow homozygous loss of function effects to be studied, which in turn would facilitate variant annotation in clinical genomic testing. It is important to highlight that certain South Asian groups, such as Fijian Indians, have much larger diaspora populations in Australia compared to other countries (in Australia, the number of individuals who report to be born in Fiji is more than double that in the US) ( 12 ), and would therefore, be under-represented in current genomic databases, highlighting the need to understand South Asian genetic diversity within the Australian context. Despite the multicultural demographic nature of Australia’s population, and the increase of migrants from South Asian countries in recent years, there have been no genomic studies focused on the South Asian population in Australia to date. The South Asian Genes and Health in Australia Study (SAGHA), established in 2023, aims to improve participation of South Asian Australians in genomic and CVD research through a better understanding of the barriers to research participation, and the development of a culturally sensitive recruitment protocol. Key aspects of the SAGHA study include i) assembling a research team of South Asian ancestry and with existing networks with the Queensland community, ii) establishing a community advisory group comprised of diverse members of the Queensland South Asian community, iii) conducting focus groups to understand social context and attitudes towards genomic research, iv) prioritising community engagement. The present study reports findings from a series of focus groups that aimed to understand prior experience with, and attitudes towards genomic research among South Asians living in Queensland, Australia. Methods Study Design and participant eligibility A qualitative approach was used, with focus group as the chosen method of data collection which is a well-recognised strategy for generating rich data on collective views and meanings behind those views ( 15 ). Focus groups were conducted virtually through video conferencing (Zoom) and in-person at various locations in Brisbane, Australia, which included community venues and places of worship. Eligibility included aged 18 years or older, self-identified as being of South Asian (i.e. ancestry from India, Pakistan, Bangladesh, and Sri Lanka) and residing in Queensland, Australia at the time of recruitment. Though other countries such as Nepal and Bhutan are geographically considered to be part of South Asia, their genetic ancestry is distinct with East Asian admixture, therefore, this population was excluded from this study. There were no exclusions based on prior experiences with health or genomic research. Individuals were eligible to participate regardless of English proficiency, and funding was allocated and available for interpreters where needed. Recruitment An online expression of interest (EOI) form was developed and disseminated via the researchers, members of the study consumer advisory group (CAG), and community leaders. The EOI described the study purpose, research team, and setting. Interested individuals provided basic demographic information, including ancestry and availability. Guided by discussions with community leaders, who suggested that same-gender groups might facilitate more open dialogue, female-only and male-only focus groups options were provided, with participants indicating preferences via the EOI. Purposive sampling was applied to ensure a broad cross-section of the community based on gender, age and South Asian ethnicity. Participation was further facilitated by study team members speaking at community engagement events and connecting with community leaders, closed-group advertising (i.e. The University of Queensland newsletter, LinkedIn and community Facebook and Whatsapp groups), and most commonly, from word-of-mouth. Snowballing approach also informed recruitment of participants with some volunteering to be community liaisons and connecting the researchers with interested members of their community. All individuals signed a participant consent form prior to attending a focus group. Focus groups were conducted between April and August 2023. Focus groups All focus groups were conducted by South Asian authors VN and SS and facilitated by South Asian community advocates (authors RN and HA). Given the importance of group interaction and shared experiences, community-specific focus groups were also conducted, including for individuals of Indian, Pakistani, Bangladeshi, Indo-Fijian, and Sri Lankan ancestry. Recruitment continued until there was representation from all ancestral groups across the study. Each focus group began with a brief explanation of the study aims, introductions and discussions regarding prior research participation. Participants were then shown a series of presentations providing background information on the role of genomic in health, the impact of genetic information on CVD disease risk, and limitations of current genomic testing for individuals of South Asian ancestry (Supplementary Materials 1). The group discussions were guided by questions to explore community’s attitudes and engagement with genomics research (Supplementary Materials 1). All participants were provided with a $ 30 GiftPay E-Gift card to thank them for their time. Audio recordings from focus groups were transcribed verbatim, cleaned to remove identifiable information and participants were assigned pseudonyms by author VN. Notes taken during the focus groups by authors VN and SS were used in the data analysis, which supplemented editing and included non-verbal cues from participants. Data Analysis Reflexive thematic analysis was conducted as described by Braun et al., ( 16 ). Interviews were coded by three authors: VN (genetic counsellor and researcher of Indian ancestry), TY (genetic counsellor and researcher of Brazilian ancestry) and HA (Pacific public health researcher of Fijian/South Asian ancestry). Initial codes were grouped into preliminary themes, after which, sub-themes were developed, merged, removed or separated as supported by the data and group discussion, including thematic mapping. The iterative data analysis continued until the reporting stage, with the selection of illustrative quotes to support findings. All authors reviewed the manuscript and provided feedback on the results and data interpretation. Additionally, authors MW and NC, who are of South Asian ancestry and members of the consumer advisory group, reviewed the study’s results and final manuscript, and provided feedback related to data interpretation to ensure cultural sensitivity and accurate representation of results. The qualitative analysis software NVivo 11 was used for organising data into codes and themes ( 17 ). Results Insert Table 1 here: Characteristics of Participant Demographics Table 1 Characteristics of Participant Demographics Demographic Characteristics n % Biological sex Female 39 65 Male 21 35 Ancestry India 43 72 Bangladesh 7 12 Sri Lanka 5 8 Pakistan 5 8 Self-reported ethnicity* Bengali 3 5 Gujarati 1 2 Marathi 1 2 Indo-Fijian 15 25 Kannadigas 1 2 Malayali 2 3 Punjabi 12 20 Sinhalese 2 3 Tamil 9 15 Telugu 2 3 Not reported^ 15 25 Age 18–29 7 12 30–39 23 38 40–49 12 20 50–59 6 10 60+ 12 20 *values sum more than 100% as individuals reported having more than one ethnicity; ^not reported at time of EOI Of the 78 people who submitted an EOI, 60 (77%) participated in the study (n = 9 focus groups, and n = 1 interview). Among non-participants, one person was deemed ineligible due to residing interstate, two withdrew from the study after consent, and 13 were unavailable or did not reply to invitations to attend a focus group. Additionally, two individuals required an interpreter, which the study team was not made aware of prior to the focus group, and therefore, could not accommodate on the day. Among the 60 participants, most were of Indian ancestry (n = 43; 72%), were female (n = 39; 65%) and between the ages of 30–49 (n = 35; 58%) (Table 1 ). Three themes were developed, which captured participants experiences and attitudes towards genomic and health research, namely i) genomic research: “ It’s about us ”, ii) cultural context matters, and iii) trust and relationship-building (Fig. 1). Genomic research: “It’s about us” Insert Table 2 here: Representative quotes for theme Genomics research: “It’s about us” Table 2 Representative quotes for theme Genomics research: “ It’s about us” * Sub-theme Quote Experience with research Never invited “I never got any invitation to participate in that kind of study.” (Usman, Male, 40–49 years) “I guess for me its just that I haven’t come across it…its just never crossed my path” (Madhumita, Female, 40–49 years) Previously declined health research participation “ I wouldn’t do humanised trials and stuff like that, so just something where it’s not going to cause me any harm .” (Vanaja, Female, 30–39 years). “ The other reason [I did not participate in a research study] was I was a little scared because we were interested in applying for permanent residency at that time and I was a little scared…of these studies that would hinder our application...” (Aamira, Female, 30–39 years). Attitudes towards genomic research CVD risk in South Asian communities “This [research] interests me a lot because heart disease is actually really prevalent in my family….“I'm trying to learn more about and find more information about heart disease in Indians.” (Kara, Female, 30–39 years) Strong sense of community “…I think we all do believe that this [genomic research] can help someone down the line, maybe, so even our family or…anybody from South Asia, but I suppose other countries; if my involvement now can help one, two, three, four people, even after 10 years, it’s worth it.” (Irfan, Male, 30–39 years). “I think that’s such a unique part of being South Asian is that it appeals to your sense of community and wanting to do something for the greater good.” (Dharsha, Female, 30–39 years) Lack of representation driving interest in genomic research “It’s really shocking, that given such a massive part of the population…there’s no representation in the studies and in the data on this very important cause. We definitely need to change that. (Dharsha, Female, 30–39 years) “I think things are not going to get better if we will not participate, get involved, and help the ones who are trying to help us .” (Aamira, Female, 30–39 years). Personal experience with misrepresentation in healthcare “I could totally relate to what you said about the health charts for babies, I had clinic nurses convincing me that I was starving my babies, and I remember going to my GP and just going, I don’t know what else to do and she was like, he’s making his own chart…So I stopped going to the health clinics after that.” (Trisha, Female, 30–39 years). “I myself is a cancer survivor… the tool that you mentioned, the prediction tool, that even for cancer– was specifically developed for [European] women. And they use it on us?” (Huda, Female, 40–49 years). Community awareness “We would me more willing to participate, just because we know the value of it [genomic research] more. But its like we need the awareness of it more as well” (Yamuna, Female, 30–39 years). “I didn't know that the current set of standards is based on Western data ,and data from South Asian part is not even included while producing this calculator…We are not aware about this discrimination. So I think there should be some sort of awareness program. So if people are aware, like people from South Asian part are aware that their data is not represented in the health system, or calculating the risk factors of different diseases, then they will be more interested like…then we will be benefited from that research and or participation… (Hamza, Male, 30–39 years) Strategies to facilitate engagement with research No concerns with blood test “I think I'm completely OK with [providing a blood sample] because I do believe that you have to participate, and research has to be done. Only then our community and the future generations are going to grow.” (Madhumita, Female, 40–49 years). Flexible time commitment “I think for me, it would be good if you could do everything online. Because I haven't got any free time to actually go somewhere, because getting out of the house and then the travel time and then you're getting back… all that counts .” (Madhumita, Female, 40–49 years) Education “Education. That’s the first part. Knowing what it is. No one is going to educate us like you have explained everything to us with the data, about the [research project]. That’s the main hurdle. So for me, it’s all about the education- someone is going to explain me generally about this [research]. (Kuldeep, Male, 30–39 years) *pseudonyms provided in quotes ‘ Perceptions of research’ describes participants’ prior experiences, attitudes towards, and their strategies to support genomic research participation. Nearly all participants had little to no experience in health or genomic research, and in many instances, the SAGHA project was their first interaction with any type of health research. Most individuals attributed their limited participation in health research more broadly to a lack of awareness or invited opportunities. Among the minority of individuals who had been previously invited to participate in health research, all but one had declined due to lack of lack of personal relevance or benefit to them, hesitation to engage in invasive studies, and/or fear of possible negative outcomes for visa applications. Only one person reported prior participation in a genomic study, which was motivated by the desire to obtain information about their health. After being provided with an explanation about genomic research and the SAGHA project, nearly all participants expressed strong interest in being part of future genomic studies. This interest was driven by a desire to improve personal healthcare and strong personal, family, and community experiences with CVD risk. Participants frequently noted altruistic feelings towards their families and the broader South Asian community, which is recognized as having a high prevalence of CVD risk. Participants were often shocked and/or intrigued to learn about the lack of South Asian representation in genomic research, which prompted some to share personal stories of when they felt misrepresented in healthcare. Many participants described a sense of responsibility to address the underrepresentation of South Asians in genomic research and emphasised the importance of the community leading this change. However, the lack of community awareness of these issues was highlighted as a barrier to increased research engagement, with many noting the need to improve community education on this topic. Among focus group participations, providing a biological sample, such as a blood test, was not seen as a concern or barrier to research participation. However, time commitments, including needing to travel to pathology collection centres were identified as a potential barrier to study participation. Participants reported time commitments and study expectations needed to be clearly outlined prior to participation, while providing flexibility and convenient options for those with competing needs and priorities within their community. Education was frequently raised, with a focus on understanding the purpose and value of the study, while correcting misconceptions of genomic research. Cultural Connection Insert Table 3 here: Representative quotes for theme Cultural context matters Table 3 Representative quotes for theme Cultural context matters* Sub-theme Quote Cultural heritage and identity Unique cultural identities “ South Asians, we’re different…, we are so different in our mental health, physical health, we are very different. You can’t lump us all in one group.” (Sonu, Female, 60–69 years) Language barrier “But then there would be many people who are just not here [focus group] because they couldn’t explain it in their language” (Asha, Female, 30–39 years) “No language is a very big barrier.” (Ajeet, Male, 30–39 years). Loss of identify “ I believe, like people from Fiji…we sort of lose a lot of identity, because when we come to Australia we are classified as Indians. But if you look at us very closely, we are sort of more Pacific people…even though we have an Indian heritage. But what happens is our food and everything is quite different from people in India, like the way we live, what we eat, and our lifestyle is quite different. So by us participating into something like this, we'll probably help our diaspora in future...” (Roshan, Male, 50–59 years). “…That sort of history with the migration and the changes and that [family history information] is really hard to track. …I'm not sure how much medical knowledge is there and whether it gets passed down and how it gets lost when people move here...” (Kara, Female, 30–39 years) Cultural connection “Anything particular with my homeland, any group, any information, that's one of the trigger [to participating], because I wanted to go back to my country, my family doesn't want to go back. So, there's always have some interest to find something, any collaborative approach or any sort of function, because I stay here [in Australia] … (Zaheer, Male, 30–39 years) Fear of stigma and discrimination South Asian community “Because culturally we don’t want to say anything negative… and so they don’t want the word to get around, he might not be able to get a good girl, he might have trouble getting a job, whatever it is. That fear…” (Sonu, Female, 60–69 years) “Especially in our culture- there may be sort of a stigma behind it and judgement. So, I think that might stop people from participating in it if they don't know what sort of questions are asked whether they'll be judged for what they do, eat and drink…” (Heneesha, Female, 18–29 years). Research staff “this sort of study, it may be more inclined to ask quite personal questions about health, our diet, what we eat, and in our culture…there may be sort of a stigma behind it and judgement [from research staff]. So I think that might stop people from participating in it if they don't know what sort of questions are asked whether they'll be judged for what they do, eat and drink” (Heneesha, Female, 18–29 years). Australian society “I just hope that if this research is published employees may not want to employ a South Asian people because they've got a higher degree of health problems, which means there’re more absent days, employment risk, etc…But I think in Australia there's a great bias towards people of colour, too.” (Doreen, Female, 50–59 years). Insurance companies “the Facebook groups people are sending me, you are on a hidden agenda, you want to increase the insurance fees of South Asian immigrants." (Nadia, Females 30–39 years) “one of the things that came up in my mind was, what if insurance companies used it? And we didn't get health insurance?” (Neela, Female, 40–49 years) Focus on South Asian research “I think what drew me to this one was the emphasis on being South Asian because there are so many things that are skewed towards the Western and European population...Otherwise it sort of feels like my data will get lost amongst the European Western data, so there's really no point in a really broad general study.” (Heneesha, Female, 18–29 years). “ I never really came across something that moved me enough to participate until this one [study] (Dharsha, Female, 30–39 years )” *pseudonyms provided in quotes The theme cultural connection encompasses the cultural factors and nuances of South Asian communities that can influence genomic research participation. Views towards involvement in health and genomics research were impacted by one’s cultural heritage and identity, and community perceptions, including stigma. Participants emphasised the importance of researchers understanding cultural nuances of South Asian diaspora, which can vary in cultural practices, religion, spoken language, and environment. Such differences impact community engagement with healthcare and subsequent strategies needed to support participation in genomics research. Language barrier was frequently noted by participants who identified the need to translate documents into multiple languages. However, it was acknowledged that it would not be possible to translate documents to all South Asian languages and having varied strategies including translated documents into common languages (e.g. Panjabi, Bengali, and Hindu), coupled with access to interpreters. The complexities of migration, including the associated loss of identity and connection to family history were also noted. Occasionally, the complexities of identity and identity-loss was connected to participants engagement with this research, where some participants sought to connect with culturally similar groups and felt valued. These issues were particularly pronounced among individuals of Indo-Fijian heritage who often faced challenges of misclassification in Australian society. However, these challenges further motivated individuals to engage in genomic research as an opportunity to gain knowledge, enhance cultural connections and help future generations. Fear, and the potential for stigma and discrimination was significant barrier to genomic research participation, which was prevalent across all focus groups. Such barriers were multi-faceted stemming from historical mistreatment, challenges from migration and cultural normal. Community discrimination was noted, with individuals commenting on the negative views towards health conditions from within South Asian communities that could hinder marriage and social standings of affected or at-risk individuals and/or their relatives. Thus, focus groups participants raised concerns that genomic research participation could identify health conditions, which could subsequently hinder community standings. Potential stigma from the research staff was also raised, which could arise from a lack of cultural awareness of diet and lifestyle factors. On a societal level, fear of personal and group harm was noted, which were commonly driven by personal experiences of racism or prejudice in Australia. Participants frequently questioned the impact that genetic data could have on insurance, with community fears noted about how this information could be used to raise premiums for South Asian immigrants. However, misunderstanding regarding use of genetic risk information in health insurance in Australia were common. Nevertheless, participants stressed the need for shifting the dialogue about health and stigma in the community through awareness, thereby motivating positive action towards health-related research, with improved outcomes. While there was wiliness to participate in future genomic research, some participants noted they would be less willing to participate in broader research that was not geared toward South Asian communities and placed less personal value in such studies. Concerns and dissatisfaction with being involved in broader studies were raised that could result in data being lost amongst other populations. Conversely, seeing ‘ South Asian ’ in the study materials motivated them to volunteer for the focus groups, which enhanced feelings of altruisms, safety and understanding from the research team. Trust and relationship-building Insert Table 4 here: Representative quotes for theme trust and relationship building Table 4 Representative quotes for theme trust and relationship building* Sub-theme Quote Trust and trustworthiness Trusted community champions “…About engaging community leaders, I think that would really, really help to get the message out in a way that the local community understands with someone that they trust as well, because sometimes establishments and different things, it's hard….” (Heneesha, Female, 18–29 years). “A lot of the South Asian group go to South Asian doctors, if they tell them “Hey there’s this research going on, you can participate” and it’s benefit for both of them …” (Irfan, Male, 30–39 years). Trusted connections “By word of mouth, I think, we still are like believing more when my friend would tell me something than see it on a billboard or something” (Irfan, Male, 30–39 years). Institutional trustworthiness “Because you remove the UQ sign from there, I’m not participating” (Sakshi, Female, 25–29 years) “The fact this was again linked to UQ and from someone from UQ saying that it’s legit” (Saleem, Male, 30–39 years). Researcher representation “ It’s good to see more female South Asian researchers, so yeah, I was like, okay I’ll support them .” (Yamuna, Female, 30–39, Indian) “ I felt very at ease in being able to discuss my thoughts and experiences without concern. It was also great to have people from a similar background who understood the nuances of the topic.” (Trisha, Female, 30–39 years). Data privacy “…when someone goes for research, one of the protective mechanisms is...the trustworthiness. Will it [data access] be open to all? I understand that many of the genetic research data is open in many platforms … [do they] have a proper policy for maintaining those privacy and confidentiality?” (Zaheer, Male, 30–39 years) Relationship building and representation in research team Ongoing relationships “I feel like having the trust is built by people that you've been communicating with... And so, to have a person that you can keep that sort of the rapport going throughout this stage that would definitely be helpful… it would just be good to establish a continuing relationship with the people that are involved in this study, because it gives you a little bit of an understanding of why are we all here? What are we putting our efforts towards? What is the legacy that we're going to be leaving. It just gives a little bit more gravitas to this study.” (Dharsha, Female, 30–39 years). Engagement via community events “Religious places like gurdwaras, because every Sunday there is a lot of people in this particular gurdwara…I visit often in gurdwaras. There is nothing like that “this is the only place for one community”. That [the gurdwara] is for all the people.” (Ajeet, Male, 30–39 years). I know people in the South Asian communities are very tight and I think reaching out to specific events that are for them is really a very good opportunity to talk about these things. Feeling heard “ it is important that we are heard, even in health-related matters. Therefore, even if some of us, only a few of us are coming forward, it is a signal that this an important matter and we need to support each other. ” (Karthik, Male, 70 + years). *pseudonyms provided in quotes The third theme of ‘t rust and relationship-building’ encompasses the significance of trust, establishing trustworthiness, and relationship-building with South Asian communities to support engagement with genomic research. Among all participants, trust was a key factor in research-related decisions, which mitigated fears and concerns described. Several participants recommended “ championing ” trusted members of community to disseminate research information, and cited word-of-mouth to be the most effective and believable source of communication. In fact, when reflecting on their decision to attend the focus group, most individuals described being told of the study by trusted connections, which helped them feel reassured about participating. Such feelings were enhanced by perceptions of The University of Queensland as a trustworthy and credible institution. Representation of South Asian individuals in the research team further enhanced trustworthiness of the study, where cultural concordance within the research team helped participants feel more at ease in sharing their perspectives, without fear of judgement. In the context of genomic research, trust in the researcher to maintain data privacy was highly valued given historical mistreatment of South Asian communities and fear of discrimination. Participants frequently emphasised that the importance of establishing ongoing relationships and having community researchers who understood community nuances and context enabled open communication between the researchers, study participants and the participants, allowing these interactions to be authentic. This relationship building was a complex process that involved feeling seen, clear and open communication, further encouraged discussions, increasing awareness, and thus active community involvement. This was particularly important around discussions that involved stigma and trust. During these discussions, many participants voluntarily shared details about trusted groups and organisations who may assist in disseminating research information, along with events and places where a high volume of South Asians access and attend, such as religious and spiritual gatherings. A trusting relationship was seen as essential in developing genuine partnerships with communities to support genomic research participation. This also meant maintaining that relationship after the study completion. As reflected by study participants who expressed appreciation for the ongoing communication and engagement with the SAGHA research team, and stated the importance of continuing that relationship even after the research was completed. Several participants commended the research team on their active work with community as partners and recognised the efforts with meeting the community where they are at. Feedback received from participants following focus groups indicated that they felt empowered being involved, appreciated being able to contribute to the study, and understood by the researchers who were familiar with community nuances and context. Discussion To our knowledge, this is the first study to explore the attitudes and perceptions of South Asian Australians on genomic research. Positive views about genomic research were identified, with all participants recognising possible benefits for themselves, their families and/or their community. However, few individuals had participated in health research, primarily due to the lack of reach from researchers. Fear of stigma and discrimination were a major barrier to future genomic research participation, which was multi-faceted and stemmed from within the community and lived experiences of discrimination in Australia. Consequently, privacy was highly valued by participants, both in maintaining confidentiality of research participation and for genomic data security. Such concerns about data privacy and confidentiality are commonly reported among diverse groups and marginalised populations ( 18 , 19 ), many of whom have historically been excluded from health research or treated as passive subjects, leading to entrenched scepticism ( 20 , 21 ). Conversely, the importance of partnership and relationship-building together, with establishing trust were key factors in facilitating research participation. Collectively, our findings underscore the importance of developing culturally tailored recruitment strategies that prioritise proactive community engagement and education. Several frameworks have been developed to engage diverse communities in genomics research ( 2 , 22 , 23 ). These frameworks have been frequently adapted from the community-based participatory (CBPR), a collaborative approach to research that incorporates community partnership in achieving equitable outcomes for health and research ( 24 ). The CBPR consists of four domains: research context, partnership processes, intervention and research design, and outcomes ( 24 ). In line with our findings, defining and understanding the context of the research is an essential first step to enhancing genomic research participation. Researchers should understand the historical, social, cultural, community and economic factors that influence research engagement ( 22 ). For our participants, the strong lived experience of CVD, cultural factors, migration and prior experience with health inequalities were identified as influencing SAGHA enrolment. Furthermore, the unique cultural nuances of South Asian communities influenced several aspects of the research engagement, including diversity of languages, cultural connections, and fear of stigma and discrimination from within the community. Identifying these contextual factors enables community engagement through culturally appropriate and targeted means, which is crucial to ensure inclusion and improve accessibility for those who may not otherwise be reached through current research recruitment practices. This process involves using culturally sensitive communication strategies, tailoring messages to the community's linguistic needs, and leveraging local networks and events. Additionally, involving community members in the research design process and establishing feedback mechanisms can enhance relevance of the study and acceptability among community ( 25 , 26 ). Trust and partnership building are key to all recruitment frameworks ( 2 , 22 , 23 ), and are commonly reported by communities, including South Asian groups, as facilitators to research participation ( 27 , 28 ). A lack of trust frequently stems from the burden of historical injustices or negative experiences with healthcare, which can hinder engagement with genomics research ( 2 ). Building long-term relationships with the community and providing tangible benefits, such as health education and improved health outcomes, are essential for fostering trust and encouraging ongoing participation. Partnerships building is a multi-faceted process involving the study funding body, research team, institution, and health service, all working together to establish and nurture relationships with the community ( 2 , 22 , 23 , 29 ). Sustained partnerships with ongoing communication are crucial for developing genuine relationships and ensuring accountability. Regular communication helps build trust by demonstrating consistency and reliability, fostering mutual understanding, and allowing for adaptability and responsiveness. Such approaches ensure accountability through transparency, shared decision-making, continuous monitoring, and a commitment to ethical practices ( 2 , 22 , 23 ). Within the context of SAGHA, several strategies were implemented from the onset (i.e., grant writing stage) to aid establish trust and partnership. Specifically, these strategies encompassed: the inclusion of South Asian researchers and community leaders in the study team, the establishment of a community advisory group, and extensive community engagement via focus groups and attendance at community events. While such efforts have been key to establishing community trust and partnerships within SAGHA, it is important to acknowledge that current funding cycles are not conducive to maintaining meaningful long-term community relationships ( 30 ). Thus, novel ways to support long-term community engagement are needed, which will require a systemic approach across government, university, researchers, and individual levels. Our findings should be interpreted in line with the study limitations. Firstly, focus groups were advertised and conducted in English, potentially limiting study participation among the broader community. Although no interpreters were requested during the EOI phase, two community members unexpectedly required translation assistance during the focus groups, and the team was unable to accommodate participation on the day. Future focus groups and educational sessions may benefit from having accredited, community-based interpreters available to facilitate discussions, recognising that the lingual diversity within the South Asian community could be challenging. The study also focused on genomics within the context of CVD, and therefore, attitudes towards research participation for other health conditions may vary. Despite efforts to recruit a geographically and gender diverse cohort, most participant were females. Similarly, most participants were of Indian ancestry, which is not unexpected as Indian is the most commonly cited South Asian ancestry in Australia ( 31 ). Despite not capturing the complex heterogeneity of the South Asian community, findings were consistent across community groups, regardless of ancestry, ethnicity, and sex. Interestingly, targeted recruitment of specific groups (i.e. Fijian Indian, Punjabi, Tamil and Bangladeshi) in collaboration with community researchers yielded higher number of participants, highlighting the importance of targeted recruitment through community partnership and engagement. The strengths of this study included the relationship building and community engagement via a research team comprised of individuals of South Asian ancestry, and the establishment of a community advisory group. These strategies facilitated recruitment of participants to focus group and supported a safe, respectful environment conducive to sharing cultural nuances and experiences. This study highlights the views and attitudes of South Asians living in Australia regarding genomic research participation. Although attitudes towards research were generally positive, fear of stigma which could negatively impact marital and employment prospects, was noted as a barrier. Facilitators of participation included receiving a culturally specific invitation, ideally by a trusted individual, and faith in the trustworthiness of the research group and parent organisation. Cultural representation in the research team promoted trust, safety, and inclusion. Findings will have implications to community engagement in genomic research, and these community perceptions will inform the next phase of research for this study including the development of an inclusive framework for conducting genomic research within South Asian communities. Declarations Data availability statement The datasets generated during and/or analysed during the current study are not publicly available to maintain participant privacy and confidentiality but are available from the corresponding author on reasonable request. Acknowledgements We would like to acknowledge members of the SAGHA Community Advisory Group for their advice and assistance in the design phase of this pilot project. Thank you to members of the Human Studies Unit, IMB University of Queensland, Leanne Wallace, Laura Ziser and Madhura Bhadravathi Lokeshappa for the development and use of the Human Studies Research Portal database for this project. Thank you to Focus Group participants, community members of the South Asian community in Queensland, Australia for their contribution to this work. This study was funded by a Medical Research Future Fund Genomics Health Futures Mission Streams (APP 2015961). Author TY is funded by a National Health and Medical Research Council (NHMRC) EL1 Grant (APP2009136). Author contributions Vaishnavi Nathan, 1 Heena Akbar, 2 Aideen McInerney-Leo, 1 Deborah Gilroy, 3 Anjali Henders, 3 Sonia Shah 3 * and Tatiane Yanes 1 * on behalf of the South Asian Genes and Health in Australia (SAGHA) research team Authors TY and SS conceived the study and developed the study protocol. Authors VN, HA, DG, AH, and SS oversaw participant recruitment and data collection. Authors VN, HK, AML, SS and TY conducted initial data analysis. All authors reviewed the study findings and final manuscript. Ethical approval This study was approved by the University of Queensland Human Research Ethics Committee (2022/HE001388). Competing interests The authors have not competed interest to declare. References Martin AR, Kanai M, Kamatani Y, Okada Y, Neale BM, Daly MJ. Clinical use of current polygenic risk scores may exacerbate health disparities. Nat Genet. 2019;51(4):584–91. Fatumo S, Chikowore T, Choudhury A, Ayub M, Martin AR, Kuchenbaecker K. A roadmap to increase diversity in genomic studies. Nature Medicine. 2022;28(2):243–50. Hindorff LA, Bonham VL, Brody LC, Ginoza MEC, Hutter CM, Manolio TA, et al. Prioritizing diversity in human genomics research. Nature Reviews Genetics. 2018;19(3):175–85. Madden EB, Hindorff LA, Bonham VL, Akintobi TH, Burchard EG, Baker KE, et al. Advancing genomics to improve health equity. Nat Genet. 2024;56(5):752–7. Skantharajah N, Baichoo S, Boughtwood TF, Casas-Silva E, Chandrasekharan S, Dave SM, et al. Equity, diversity, and inclusion at the Global Alliance for Genomics and Health. Cell Genomics. 2023;3(10):100386. Genomics England. Diverse Data Strategy 2022-25 [Available from: https://www.genomicsengland.co.uk/initiatives/diverse-data The “All of Us” Research Program. New England Journal of Medicine. 2019;381(7):668–76. Our DNA [Available from: https://www.ourdna.org.au/ Popejoy AB, Fullerton SM. Genomics is failing on diversity. Nature. 2016;538(7624):161–4. Popejoy AB, Crooks KR, Fullerton SM, Hindorff LA, Hooker GW, Koenig BA, et al. Clinical Genetics Lacks Standard Definitions and Protocols for the Collection and Use of Diversity Measures. Am J Hum Genet. 2020;107(1):72–82. Bentley AR, Callier S, Rotimi CN. Diversity and inclusion in genomic research: why the uneven progress? J Community Genet. 2017;8(4):255–66. Australian Bureau of Statistics. Overseas Migration [Internet]. Canberra: ABS; 2023-24 [Available from: Available from: https://www.abs.gov.au/statistics/people/population/overseas-migration/latest-release . Bhattacharyya C, Subramanian K, Uppili B, Biswas NK, Ramdas S, Tallapaka KB, et al. Mapping genetic diversity with the GenomeIndia project. Nature Genetics. 2025;57(4):767–73. Wall JD, Sathirapongsasuti JF, Gupta R, Rasheed A, Venkatesan R, Belsare S, et al. South Asian medical cohorts reveal strong founder effects and high rates of homozygosity. Nature Communications. 2023;14(1):3377. Gill P, Stewart K, Treasure E, Chadwick B. Methods of data collection in qualitative research: interviews and focus groups. Br Dent J. 2008;204(6):291–5. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101. Nvivo Qualitative data analysis software. 14 ed: QSR International Pty Ltd; 2023. Leader AE, Mohanty S, Selvan P, Lum R, Giri VN. Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the development of a community genetics intervention. J Community Genet. 2018;9(1):27–35. Wong ML, Chia KS, Wee S, Chia SE, Lee J, Koh WP, et al. Concerns over participation in genetic research among Malay-Muslims, Chinese and Indians in Singapore: a focus group study. Community Genet. 2004;7(1):44–54. Garrison NA. Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Sci Technol Human Values. 2013;38(2):201–23. Angelo F, Veenstra D, Knerr S, Devine B. Prevalence and prediction of medical distrust in a diverse medical genomic research sample. Genetics in Medicine. 2022;24(7):1459–67. Rebbeck TR, Bridges JFP, Mack JW, Gray SW, Trent JM, George S, et al. A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research. JAMA Health Forum. 2022;3(4). Watson KS, Cohn EG, Fair A, Menon U, Szalacha LA, Carpenter SM, et al. Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research. Health Expectations. 2022;25(4):1478–85. Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health. 2010;100 Suppl 1(Suppl 1):S40-6. Ogunsanya ME, Kaninjing E, Morton DJ, Dwyer K, Young ME, Odedina FT. Bridging the Gap: A Community Advisory Board Promoting Community Engagement in Cancer Research for Ethnically Diverse Populations. American Journal of Men's Health. 2024;18(5):15579883241280826. Wale JL, Di Pietro L, Renton H, Sahhar M, Walker C, Williams P, et al. Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective. Research Involvement and Engagement. 2021;7(1):84. Magavern EF, Durrani F, Raza M, Lerner R, Islam MR, Genes, et al. British South Asian ancestry participants views of pharmacogenomics clinical implementation and research: a thematic analysis. Pharmacogenomics J. 2023;23(6):185–94. Sheikh ZA, Hoeyer K. "Stop Talking to People; Talk with Them": A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark. J Empir Res Hum Res Ethics. 2019;14(1):3–14. Lemke AA, Esplin ED, Goldenberg AJ, Gonzaga-Jauregui C, Hanchard NA, Harris-Wai J, et al. Addressing underrepresentation in genomics research through community engagement. The American Journal of Human Genetics. 2022;109(9):1563–71. Zierhut HA, Kandikonda P, Simon EM, Donarski C, Kocher M, Ramírez M, et al. Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings. Journal of Community Genetics. 2024. Statistics ABo. Australia's Population by Country of Birth. 2023. Additional Declarations There is no duality of interest Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: revise 01 Aug, 2025 Review # 2 received at journal 27 Jun, 2025 Review # 1 received at journal 26 Jun, 2025 Reviewer # 2 agreed at journal 06 Jun, 2025 Reviewer # 1 agreed at journal 04 Jun, 2025 Reviewers invited by journal 02 Jun, 2025 Submission checks completed at journal 23 May, 2025 First submitted to journal 23 May, 2025 Unknown event 23 May, 2025 Editor assigned by journal 20 May, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6707183","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":465275729,"identity":"67e021b2-4f1d-4f91-a2e7-3bdffd7397cf","order_by":0,"name":"Tatiane Yanes","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAw0lEQVRIiWNgGAWjYBADOTDJQ4xSmCJj0rUkNhCtxZ6Bx/BzQUVd+objCYwP3rYxyBscIGgLj7H0jDOHczececBsOLeNwXADEVoMpHnbDuRuuJHABmQwMBKjxfg377+6dIMbCey/gVrsidFiJs3bwJwA1MLGDNSSSFjLYbYya55jhw1nnnnYLDnnnETyTEJa2NubN9/mqamT5zuefPDDmzIb2z5CWhiYOQygLHDUSBBSD7bnAZSRQIzqUTAKRsEoGIkAALGiOzDUR3AwAAAAAElFTkSuQmCC","orcid":"https://orcid.org/0000-0002-3905-3025","institution":"The University of Queensland Frazer Institute","correspondingAuthor":true,"prefix":"","firstName":"Tatiane","middleName":"","lastName":"Yanes","suffix":""},{"id":465275730,"identity":"892bc81f-5b3f-4541-87ae-4102b9fa57d9","order_by":1,"name":"Vaishnavi Nathan","email":"","orcid":"","institution":"The University of Queensland Frazer Institute","correspondingAuthor":false,"prefix":"","firstName":"Vaishnavi","middleName":"","lastName":"Nathan","suffix":""},{"id":465275731,"identity":"21348c5f-4f8f-47d2-b21b-7261132cd8e4","order_by":2,"name":"Heena Akbar","email":"","orcid":"https://orcid.org/0000-0002-0630-3032","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Heena","middleName":"","lastName":"Akbar","suffix":""},{"id":465275732,"identity":"1c93d8ec-699c-4391-942b-7665e54b6acf","order_by":3,"name":"McInerney-Leo Aideen","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"McInerney-Leo","middleName":"","lastName":"Aideen","suffix":""},{"id":465275733,"identity":"30d71add-d0c0-409a-87a1-5019afbdc553","order_by":4,"name":"Deborah Gilroy","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Deborah","middleName":"","lastName":"Gilroy","suffix":""},{"id":465275734,"identity":"ab8bedf4-3667-4a62-aa25-40370f2983ef","order_by":5,"name":"Anjali Henders","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Anjali","middleName":"","lastName":"Henders","suffix":""},{"id":465275735,"identity":"a9c0d4b2-974d-4ebf-9044-462f0b1202f5","order_by":6,"name":"Nahid Choudhury","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Nahid","middleName":"","lastName":"Choudhury","suffix":""},{"id":465275736,"identity":"d70b83d3-f9f8-4304-8698-e736639a9248","order_by":7,"name":"Maleeha Waqar","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Maleeha","middleName":"","lastName":"Waqar","suffix":""},{"id":465275737,"identity":"91d6697e-0e93-4481-943a-88e8be8c5e15","order_by":8,"name":"Sonia Shah","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Sonia","middleName":"","lastName":"Shah","suffix":""}],"badges":[],"createdAt":"2025-05-20 11:21:06","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6707183/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6707183/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":84199715,"identity":"8e34a4ab-f8b7-493c-81b6-d6ed18bf6d54","added_by":"auto","created_at":"2025-06-09 08:20:04","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":5713,"visible":true,"origin":"","legend":"\u003cp\u003eThree themes were developed, which captured participants experiences and attitudes towards genomic and health research, namely i) genomic research: “\u003cem\u003eIt’s about us\u003c/em\u003e”, ii) cultural context matters, and iii) trust and relationship-building.\u003c/p\u003e","description":"","filename":"placeholderimage.png","url":"https://assets-eu.researchsquare.com/files/rs-6707183/v1/ea100aae64e53610cf574a30.png"},{"id":84201828,"identity":"a8ea6aae-a9e0-49b9-b5a1-ceeabec45a7c","added_by":"auto","created_at":"2025-06-09 08:36:05","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":817753,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6707183/v1/18dd2ec8-8616-44f2-bc93-7d24d45e9ccf.pdf"}],"financialInterests":"There is no duality of interest","formattedTitle":"“There’s no representation”: A qualitative study of attitudes and motivations towards genomic research among South Asian Australians","fulltext":[{"header":"Introduction","content":"\u003cp\u003eWhile the benefits of genomic testing in healthcare are well recognised, there are limitations to this technology that can exacerbate health inequalities for individuals of non-European ancestry (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Specifically, interpretation of test results relies on established genomic databases that are predominantly comprised of data from European populations (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Differences in variant frequencies and effect sizes, as well as missed variants in underrepresented populations can result in less equitable testing for those of non-European ancestry. For example, compared to people of European ancestry, those of non-European ancestry are more likely to receive non-clinically significant results from genomic testing, such as variants not being identified or due to variants of unknown significance. The urgent need to improve representation of diverse populations in genomic research has been widely recognised as an area of priority by the genetics community (\u003cspan additionalcitationids=\"CR4\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Several initiatives are currently underway to addresses this pressing issue (\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). While international efforts towards inclusive genomic research have made significant strides, the overall representation of diverse groups in genomic datasets continues to be low (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). The lack of progress has been attributed to a lag in capacity-building, funding restraints, limited employment of diverse research personnel and relationship-building with communities, and inadequate targeted recruitment efforts tailored to specific populations (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Unlike countries such as the US, UK and New Zealand, such efforts to increase diversity in genomics research are lagging in Australia, hampered further by the lack of standardised approaches for capturing ancestry information within the healthcare system.\u003c/p\u003e \u003cp\u003eSouth Asians (ancestry from India, Pakistan, Bangladesh, Sri Lanka, Nepal, and Bhutan) makeup the largest, non-European overseas-born population in Australia (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Many of the contemporary South Asian populations originate from a few founding groups that have maintained distinct identities through centuries of endogamy (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) (i.e., marriages that are restricted within a particular South Asian ethnic group), a practice often maintained amongst diasporas. This has resulted in greater rates of homozygosity (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) and distinct disease-causing mutations with amplified frequencies within specific South Asian ethnic groups (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Large South Asian genomic databases would therefore allow homozygous loss of function effects to be studied, which in turn would facilitate variant annotation in clinical genomic testing. It is important to highlight that certain South Asian groups, such as Fijian Indians, have much larger diaspora populations in Australia compared to other countries (in Australia, the number of individuals who report to be born in Fiji is more than double that in the US) (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), and would therefore, be under-represented in current genomic databases, highlighting the need to understand South Asian genetic diversity within the Australian context. Despite the multicultural demographic nature of Australia\u0026rsquo;s population, and the increase of migrants from South Asian countries in recent years, there have been no genomic studies focused on the South Asian population in Australia to date.\u003c/p\u003e \u003cp\u003eThe South Asian Genes and Health in Australia Study (SAGHA), established in 2023, aims to improve participation of South Asian Australians in genomic and CVD research through a better understanding of the barriers to research participation, and the development of a culturally sensitive recruitment protocol. Key aspects of the SAGHA study include i) assembling a research team of South Asian ancestry and with existing networks with the Queensland community, ii) establishing a community advisory group comprised of diverse members of the Queensland South Asian community, iii) conducting focus groups to understand social context and attitudes towards genomic research, iv) prioritising community engagement. The present study reports findings from a series of focus groups that aimed to understand prior experience with, and attitudes towards genomic research among South Asians living in Queensland, Australia.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design and participant eligibility\u003c/h2\u003e \u003cp\u003eA qualitative approach was used, with focus group as the chosen method of data collection which is a well-recognised strategy for generating rich data on collective views and meanings behind those views (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Focus groups were conducted virtually through video conferencing (Zoom) and in-person at various locations in Brisbane, Australia, which included community venues and places of worship. Eligibility included aged 18 years or older, self-identified as being of South Asian (i.e. ancestry from India, Pakistan, Bangladesh, and Sri Lanka) and residing in Queensland, Australia at the time of recruitment. Though other countries such as Nepal and Bhutan are geographically considered to be part of South Asia, their genetic ancestry is distinct with East Asian admixture, therefore, this population was excluded from this study. There were no exclusions based on prior experiences with health or genomic research. Individuals were eligible to participate regardless of English proficiency, and funding was allocated and available for interpreters where needed.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRecruitment\u003c/h3\u003e\n\u003cp\u003eAn online expression of interest (EOI) form was developed and disseminated via the researchers, members of the study consumer advisory group (CAG), and community leaders. The EOI described the study purpose, research team, and setting. Interested individuals provided basic demographic information, including ancestry and availability. Guided by discussions with community leaders, who suggested that same-gender groups might facilitate more open dialogue, female-only and male-only focus groups options were provided, with participants indicating preferences via the EOI. Purposive sampling was applied to ensure a broad cross-section of the community based on gender, age and South Asian ethnicity. Participation was further facilitated by study team members speaking at community engagement events and connecting with community leaders, closed-group advertising (i.e. The University of Queensland newsletter, LinkedIn and community Facebook and Whatsapp groups), and most commonly, from word-of-mouth. Snowballing approach also informed recruitment of participants with some volunteering to be community liaisons and connecting the researchers with interested members of their community. All individuals signed a participant consent form prior to attending a focus group. Focus groups were conducted between April and August 2023.\u003c/p\u003e\n\u003ch3\u003eFocus groups\u003c/h3\u003e\n\u003cp\u003e All focus groups were conducted by South Asian authors VN and SS and facilitated by South Asian community advocates (authors RN and HA). Given the importance of group interaction and shared experiences, community-specific focus groups were also conducted, including for individuals of Indian, Pakistani, Bangladeshi, Indo-Fijian, and Sri Lankan ancestry. Recruitment continued until there was representation from all ancestral groups across the study. Each focus group began with a brief explanation of the study aims, introductions and discussions regarding prior research participation. Participants were then shown a series of presentations providing background information on the role of genomic in health, the impact of genetic information on CVD disease risk, and limitations of current genomic testing for individuals of South Asian ancestry (Supplementary Materials 1). The group discussions were guided by questions to explore community\u0026rsquo;s attitudes and engagement with genomics research (Supplementary Materials 1). All participants were provided with a \u003cspan\u003e$\u003c/span\u003e30 GiftPay E-Gift card to thank them for their time. Audio recordings from focus groups were transcribed verbatim, cleaned to remove identifiable information and participants were assigned pseudonyms by author VN. Notes taken during the focus groups by authors VN and SS were used in the data analysis, which supplemented editing and included non-verbal cues from participants.\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eReflexive thematic analysis was conducted as described by Braun et al., (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Interviews were coded by three authors: VN (genetic counsellor and researcher of Indian ancestry), TY (genetic counsellor and researcher of Brazilian ancestry) and HA (Pacific public health researcher of Fijian/South Asian ancestry). Initial codes were grouped into preliminary themes, after which, sub-themes were developed, merged, removed or separated as supported by the data and group discussion, including thematic mapping. The iterative data analysis continued until the reporting stage, with the selection of illustrative quotes to support findings. All authors reviewed the manuscript and provided feedback on the results and data interpretation. Additionally, authors MW and NC, who are of South Asian ancestry and members of the consumer advisory group, reviewed the study\u0026rsquo;s results and final manuscript, and provided feedback related to data interpretation to ensure cultural sensitivity and accurate representation of results. The qualitative analysis software NVivo 11 was used for organising data into codes and themes (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e \u003cem\u003eInsert\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e \u003cem\u003ehere: Characteristics of Participant Demographics\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCharacteristics of Participant Demographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDemographic Characteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003en\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e%\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eBiological sex\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e65\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eAncestry\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIndia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBangladesh\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSri Lanka\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePakistan\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSelf-reported ethnicity*\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBengali\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGujarati\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarathi\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIndo-Fijian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKannadigas\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMalayali\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePunjabi\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSinhalese\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTamil\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTelugu\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot reported^\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eAge\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18\u0026ndash;29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e30\u0026ndash;39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e40\u0026ndash;49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e50\u0026ndash;59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e60+\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003e*values sum more than 100% as individuals reported having more than one ethnicity; ^not reported at time of EOI\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eOf the 78 people who submitted an EOI, 60 (77%) participated in the study (n\u0026thinsp;=\u0026thinsp;9 focus groups, and n\u0026thinsp;=\u0026thinsp;1 interview). Among non-participants, one person was deemed ineligible due to residing interstate, two withdrew from the study after consent, and 13 were unavailable or did not reply to invitations to attend a focus group. Additionally, two individuals required an interpreter, which the study team was not made aware of prior to the focus group, and therefore, could not accommodate on the day. Among the 60 participants, most were of Indian ancestry (n\u0026thinsp;=\u0026thinsp;43; 72%), were female (n\u0026thinsp;=\u0026thinsp;39; 65%) and between the ages of 30\u0026ndash;49 (n\u0026thinsp;=\u0026thinsp;35; 58%) (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Three themes were developed, which captured participants experiences and attitudes towards genomic and health research, namely i) genomic research: \u0026ldquo;\u003cem\u003eIt\u0026rsquo;s about us\u003c/em\u003e\u0026rdquo;, ii) cultural context matters, and iii) trust and relationship-building (Fig.\u0026nbsp;1).\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eGenomic research: \u0026ldquo;It\u0026rsquo;s about us\u0026rdquo;\u003c/h2\u003e \u003cp\u003e \u003cem\u003eInsert\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e \u003cem\u003ehere: Representative quotes for theme Genomics research: \u0026ldquo;It\u0026rsquo;s about us\u0026rdquo;\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eRepresentative quotes for theme Genomics research: \u0026ldquo;\u003cem\u003eIt\u0026rsquo;s about us\u0026rdquo;\u003c/em\u003e*\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSub-theme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQuote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eExperience with research\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNever invited\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I never got any invitation to participate in that kind of study.\u0026rdquo;\u003c/em\u003e (Usman, Male, 40\u0026ndash;49 years)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I guess for me its just that I haven\u0026rsquo;t come across it\u0026hellip;its just never crossed my path\u0026rdquo;\u003c/em\u003e (Madhumita, Female, 40\u0026ndash;49 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePreviously declined health research participation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI wouldn\u0026rsquo;t do humanised trials and stuff like that, so just something where it\u0026rsquo;s not going to cause me any harm\u003c/em\u003e.\u0026rdquo; (Vanaja, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eThe other reason\u003c/em\u003e [I did not participate in a research study] \u003cem\u003ewas I was a little scared because we were interested in applying for permanent residency at that time and I was a little scared\u0026hellip;of these studies that would hinder our application...\u0026rdquo;\u003c/em\u003e (Aamira, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAttitudes towards genomic research\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCVD risk in South Asian communities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;This\u003c/em\u003e [research] \u003cem\u003einterests me a lot because heart disease is actually really prevalent in my family\u0026hellip;.\u0026ldquo;I'm trying to learn more about and find more information about heart disease in Indians.\u0026rdquo; (Kara, Female, 30\u0026ndash;39 years)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStrong sense of community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;I think we all do believe that this\u003c/em\u003e [genomic research] \u003cem\u003ecan help someone down the line, maybe, so even our family or\u0026hellip;anybody from South Asia, but I suppose other countries; if my involvement now can help one, two, three, four people, even after 10 years, it\u0026rsquo;s worth it.\u0026rdquo;\u003c/em\u003e (Irfan, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I think that\u0026rsquo;s such a unique part of being South Asian is that it appeals to your sense of community and wanting to do something for the greater good.\u0026rdquo;\u003c/em\u003e (Dharsha, Female, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLack of representation driving interest in genomic research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026rsquo;s really shocking, that given such a massive part of the population\u0026hellip;there\u0026rsquo;s no representation in the studies and in the data on this very important cause. We definitely need to change that.\u003c/em\u003e (Dharsha, Female, 30\u0026ndash;39 years)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I think things are not going to get better if we will not participate, get involved, and help the ones who are trying to help us\u003c/em\u003e.\u0026rdquo; (Aamira, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePersonal experience with misrepresentation in healthcare\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I could totally relate to what you said about the health charts for babies, I had clinic nurses convincing me that I was starving my babies, and I remember going to my GP and just going, I don\u0026rsquo;t know what else to do and she was like, he\u0026rsquo;s making his own chart\u0026hellip;So I stopped going to the health clinics after that.\u0026rdquo;\u003c/em\u003e (Trisha, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I myself is a cancer survivor\u0026hellip; the tool that you mentioned, the prediction tool, that even for cancer\u0026ndash; was specifically developed for\u003c/em\u003e [European] \u003cem\u003ewomen. And they use it on us?\u0026rdquo;\u003c/em\u003e (Huda, Female, 40\u0026ndash;49 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunity awareness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;We would me more willing to participate, just because we know the value of it\u003c/em\u003e [genomic research] \u003cem\u003emore. But its like we need the awareness of it more as well\u0026rdquo;\u003c/em\u003e (Yamuna, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I didn't know that the current set of standards is based on Western data ,and data from South Asian part is not even included while producing this calculator\u0026hellip;We are not aware about this discrimination. So I think there should be some sort of awareness program. So if people are aware, like people from South Asian part are aware that their data is not represented in the health system, or calculating the risk factors of different diseases, then they will be more interested like\u0026hellip;then we will be benefited from that research and or participation\u0026hellip;\u003c/em\u003e (Hamza, Male, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eStrategies to facilitate engagement with research\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo concerns with blood test\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I think I'm completely OK with\u003c/em\u003e [providing a blood sample] \u003cem\u003ebecause I do believe that you have to participate, and research has to be done. Only then our community and the future generations are going to grow.\u0026rdquo;\u003c/em\u003e (Madhumita, Female, 40\u0026ndash;49 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFlexible time commitment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;I \u003cem\u003ethink for me, it would be good if you could do everything online. Because I haven't got any free time to actually go somewhere, because getting out of the house and then the travel time and then you're getting back\u0026hellip; all that counts\u003c/em\u003e.\u0026rdquo; (Madhumita, Female, 40\u0026ndash;49 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Education. That\u0026rsquo;s the first part. Knowing what it is. No one is going to educate us like you have explained everything to us with the data, about the\u003c/em\u003e [research project]. \u003cem\u003eThat\u0026rsquo;s the main hurdle. So for me, it\u0026rsquo;s all about the education- someone is going to explain me generally about this\u003c/em\u003e [research]. (Kuldeep, Male, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e*pseudonyms provided in quotes\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e\u0026lsquo;\u003cem\u003ePerceptions of research\u0026rsquo;\u003c/em\u003e describes participants\u0026rsquo; prior experiences, attitudes towards, and their strategies to support genomic research participation. Nearly all participants had little to no experience in health or genomic research, and in many instances, the SAGHA project was their first interaction with any type of health research. Most individuals attributed their limited participation in health research more broadly to a lack of awareness or invited opportunities. Among the minority of individuals who had been previously invited to participate in health research, all but one had declined due to lack of lack of personal relevance or benefit to them, hesitation to engage in invasive studies, and/or fear of possible negative outcomes for visa applications. Only one person reported prior participation in a genomic study, which was motivated by the desire to obtain information about their health.\u003c/p\u003e \u003cp\u003eAfter being provided with an explanation about genomic research and the SAGHA project, nearly all participants expressed strong interest in being part of future genomic studies. This interest was driven by a desire to improve personal healthcare and strong personal, family, and community experiences with CVD risk. Participants frequently noted altruistic feelings towards their families and the broader South Asian community, which is recognized as having a high prevalence of CVD risk. Participants were often shocked and/or intrigued to learn about the lack of South Asian representation in genomic research, which prompted some to share personal stories of when they felt misrepresented in healthcare. Many participants described a sense of responsibility to address the underrepresentation of South Asians in genomic research and emphasised the importance of the community leading this change. However, the lack of community awareness of these issues was highlighted as a barrier to increased research engagement, with many noting the need to improve community education on this topic.\u003c/p\u003e \u003cp\u003eAmong focus group participations, providing a biological sample, such as a blood test, was not seen as a concern or barrier to research participation. However, time commitments, including needing to travel to pathology collection centres were identified as a potential barrier to study participation. Participants reported time commitments and study expectations needed to be clearly outlined prior to participation, while providing flexibility and convenient options for those with competing needs and priorities within their community. Education was frequently raised, with a focus on understanding the purpose and value of the study, while correcting misconceptions of genomic research.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eCultural Connection\u003c/h3\u003e\n\u003cp\u003e \u003cem\u003eInsert\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e \u003cem\u003ehere: Representative quotes for theme Cultural context matters\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eRepresentative quotes for theme Cultural context matters*\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSub-theme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQuote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eCultural heritage and identity\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnique cultural identities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eSouth Asians, we\u0026rsquo;re different\u0026hellip;, we are so different in our mental health, physical health, we are very different. You can\u0026rsquo;t lump us all in one group.\u0026rdquo;\u003c/em\u003e (Sonu, Female, 60\u0026ndash;69 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLanguage barrier\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;But then there would be many people who are just not here\u003c/em\u003e [focus group] \u003cem\u003ebecause they couldn\u0026rsquo;t explain it in their language\u0026rdquo;\u003c/em\u003e (Asha, Female, 30\u0026ndash;39 years)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;No language is a very big barrier.\u0026rdquo;\u003c/em\u003e (Ajeet, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLoss of identify\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI believe, like people from Fiji\u0026hellip;we sort of lose a lot of identity, because when we come to Australia we are classified as Indians. But if you look at us very closely, we are sort of more Pacific people\u0026hellip;even though we have an Indian heritage. But what happens is our food and everything is quite different from people in India, like the way we live, what we eat, and our lifestyle is quite different. So by us participating into something like this, we'll probably help our diaspora in future...\u0026rdquo;\u003c/em\u003e (Roshan, Male, 50\u0026ndash;59 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;That sort of history with the migration and the changes and that\u003c/em\u003e [family history information] \u003cem\u003eis really hard to track. \u0026hellip;I'm not sure how much medical knowledge is there and whether it gets passed down and how it gets lost when people move here...\u0026rdquo;\u003c/em\u003e (Kara, Female, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCultural connection\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Anything particular with my homeland, any group, any information, that's one of the trigger\u003c/em\u003e [to participating], \u003cem\u003ebecause I wanted to go back to my country, my family doesn't want to go back. So, there's always have some interest to find something, any collaborative approach or any sort of function, because I stay here\u003c/em\u003e [in Australia]\u003cem\u003e\u0026hellip;\u003c/em\u003e (Zaheer, Male, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFear of stigma and discrimination\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSouth Asian community\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Because culturally we don\u0026rsquo;t want to say anything negative\u0026hellip; and so they don\u0026rsquo;t want the word to get around, he might not be able to get a good girl, he might have trouble getting a job, whatever it is. That fear\u0026hellip;\u0026rdquo;\u003c/em\u003e (Sonu, Female, 60\u0026ndash;69 years)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Especially in our culture- there may be sort of a stigma behind it and judgement. So, I think that might stop people from participating in it if they don't know what sort of questions are asked whether they'll be judged for what they do, eat and drink\u0026hellip;\u0026rdquo;\u003c/em\u003e (Heneesha, Female, 18\u0026ndash;29 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eResearch staff\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;this sort of study, it may be more inclined to ask quite personal questions about health, our diet, what we eat, and in our culture\u0026hellip;there may be sort of a stigma behind it and judgement\u003c/em\u003e [from research staff]. \u003cem\u003eSo I think that might stop people from participating in it if they don't know what sort of questions are asked whether they'll be judged for what they do, eat and drink\u0026rdquo;\u003c/em\u003e (Heneesha, Female, 18\u0026ndash;29 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAustralian society\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I just hope that if this research is published employees may not want to employ a South Asian people because they've got a higher degree of health problems, which means there\u0026rsquo;re more absent days, employment risk, etc\u0026hellip;But I think in Australia there's a great bias towards people of colour, too.\u0026rdquo;\u003c/em\u003e (Doreen, Female, 50\u0026ndash;59 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInsurance companies\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;the Facebook groups people are sending me, you are on a hidden agenda, you want to increase the insurance fees of South Asian immigrants.\"\u003c/em\u003e (Nadia, Females 30\u0026ndash;39 years)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;one of the things that came up in my mind was, what if insurance companies used it? And we didn't get health insurance?\u0026rdquo;\u003c/em\u003e (Neela, Female, 40\u0026ndash;49 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFocus on South Asian research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I think what drew me to this one was the emphasis on being South Asian because there are so many things that are skewed towards the Western and European population...Otherwise it sort of feels like my data will get lost amongst the European Western data, so there's really no point in a really broad general study.\u0026rdquo; (Heneesha, Female, 18\u0026ndash;29 years).\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI never really came across something that moved me enough to participate until this one\u003c/em\u003e [study] (Dharsha, Female, 30\u0026ndash;39 \u003cem\u003eyears\u003c/em\u003e)\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e*pseudonyms provided in quotes\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe theme \u003cem\u003ecultural connection\u003c/em\u003e encompasses the cultural factors and nuances of South Asian communities that can influence genomic research participation. Views towards involvement in health and genomics research were impacted by one\u0026rsquo;s cultural heritage and identity, and community perceptions, including stigma.\u003c/p\u003e \u003cp\u003eParticipants emphasised the importance of researchers understanding cultural nuances of South Asian diaspora, which can vary in cultural practices, religion, spoken language, and environment. Such differences impact community engagement with healthcare and subsequent strategies needed to support participation in genomics research. Language barrier was frequently noted by participants who identified the need to translate documents into multiple languages. However, it was acknowledged that it would not be possible to translate documents to all South Asian languages and having varied strategies including translated documents into common languages (e.g. Panjabi, Bengali, and Hindu), coupled with access to interpreters. The complexities of migration, including the associated loss of identity and connection to family history were also noted. Occasionally, the complexities of identity and identity-loss was connected to participants engagement with this research, where some participants sought to connect with culturally similar groups and felt valued. These issues were particularly pronounced among individuals of Indo-Fijian heritage who often faced challenges of misclassification in Australian society. However, these challenges further motivated individuals to engage in genomic research as an opportunity to gain knowledge, enhance cultural connections and help future generations.\u003c/p\u003e \u003cp\u003eFear, and the potential for stigma and discrimination was significant barrier to genomic research participation, which was prevalent across all focus groups. Such barriers were multi-faceted stemming from historical mistreatment, challenges from migration and cultural normal. Community discrimination was noted, with individuals commenting on the negative views towards health conditions from within South Asian communities that could hinder marriage and social standings of affected or at-risk individuals and/or their relatives. Thus, focus groups participants raised concerns that genomic research participation could identify health conditions, which could subsequently hinder community standings. Potential stigma from the research staff was also raised, which could arise from a lack of cultural awareness of diet and lifestyle factors. On a societal level, fear of personal and group harm was noted, which were commonly driven by personal experiences of racism or prejudice in Australia. Participants frequently questioned the impact that genetic data could have on insurance, with community fears noted about how this information could be used to raise premiums for South Asian immigrants. However, misunderstanding regarding use of genetic risk information in health insurance in Australia were common. Nevertheless, participants stressed the need for shifting the dialogue about health and stigma in the community through awareness, thereby motivating positive action towards health-related research, with improved outcomes.\u003c/p\u003e \u003cp\u003eWhile there was wiliness to participate in future genomic research, some participants noted they would be less willing to participate in broader research that was not geared toward South Asian communities and placed less personal value in such studies. Concerns and dissatisfaction with being involved in broader studies were raised that could result in data being lost amongst other populations. Conversely, seeing \u0026lsquo;\u003cem\u003eSouth Asian\u003c/em\u003e\u0026rsquo; in the study materials motivated them to volunteer for the focus groups, which enhanced feelings of altruisms, safety and understanding from the research team.\u003c/p\u003e\n\u003ch3\u003eTrust and relationship-building\u003c/h3\u003e\n\u003cp\u003e \u003cem\u003eInsert\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e \u003cem\u003ehere: Representative quotes for theme trust and relationship building\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eRepresentative quotes for theme trust and relationship building*\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSub-theme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQuote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eTrust and trustworthiness\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTrusted community champions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;About engaging community leaders, I think that would really, really help to get the message out in a way that the local community understands with someone that they trust as well, because sometimes establishments and different things, it's hard\u0026hellip;.\u0026rdquo;\u003c/em\u003e (Heneesha, Female, 18\u0026ndash;29 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;A lot of the South Asian group go to South Asian doctors, if they tell them \u0026ldquo;Hey there\u0026rsquo;s this research going on, you can participate\u0026rdquo; and it\u0026rsquo;s benefit for both of them\u003c/em\u003e\u0026hellip;\u0026rdquo; (Irfan, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTrusted connections\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;By word of mouth, I think, we still are like believing more when my friend would tell me something than see it on a billboard or something\u0026rdquo;\u003c/em\u003e (Irfan, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInstitutional trustworthiness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Because you remove the UQ sign from there, I\u0026rsquo;m not participating\u0026rdquo; (Sakshi, Female, 25\u0026ndash;29 years)\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;The fact this was again linked to UQ and from someone from UQ saying that it\u0026rsquo;s legit\u0026rdquo;\u003c/em\u003e (Saleem, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eResearcher representation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIt\u0026rsquo;s good to see more female South Asian researchers, so yeah, I was like, okay I\u0026rsquo;ll support them\u003c/em\u003e.\u0026rdquo; (Yamuna, Female, 30\u0026ndash;39, Indian)\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI felt very at ease in being able to discuss my thoughts and experiences without concern. It was also great to have people from a similar background who understood the nuances of the topic.\u0026rdquo;\u003c/em\u003e (Trisha, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eData privacy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;when someone goes for research, one of the protective mechanisms is...the trustworthiness. Will it\u003c/em\u003e [data access] \u003cem\u003ebe open to all? I understand that many of the genetic research data is open in many platforms\u003c/em\u003e\u0026hellip; [do they] \u003cem\u003ehave a proper policy for maintaining those privacy and confidentiality?\u0026rdquo;\u003c/em\u003e (Zaheer, Male, 30\u0026ndash;39 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eRelationship building and representation in research team\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOngoing relationships\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I feel like having the trust is built by people that you've been communicating with... And so, to have a person that you can keep that sort of the rapport going throughout this stage that would definitely be helpful\u0026hellip; it would just be good to establish a continuing relationship with the people that are involved in this study, because it gives you a little bit of an understanding of why are we all here? What are we putting our efforts towards? What is the legacy that we're going to be leaving. It just gives a little bit more gravitas to this study.\u0026rdquo;\u003c/em\u003e (Dharsha, Female, 30\u0026ndash;39 years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEngagement via community events\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Religious places like gurdwaras, because every Sunday there is a lot of people in this particular gurdwara\u0026hellip;I visit often in gurdwaras. There is nothing like that \u0026ldquo;this is the only place for one community\u0026rdquo;. That\u003c/em\u003e [the gurdwara] \u003cem\u003eis for all the people.\u0026rdquo;\u003c/em\u003e (Ajeet, Male, 30\u0026ndash;39 years).\u003c/p\u003e \u003cp\u003e\u003cem\u003eI know people in the South Asian communities are very tight and I think reaching out to specific events that are for them is really a very good opportunity to talk about these things.\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFeeling heard\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eit is important that we are heard, even in health-related matters. Therefore, even if some of us, only a few of us are coming forward, it is a signal that this an important matter and we need to support each other.\u003c/em\u003e\u0026rdquo; (Karthik, Male, 70\u0026thinsp;+\u0026thinsp;years).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e*pseudonyms provided in quotes\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe third theme of \u0026lsquo;t\u003cem\u003erust and relationship-building\u0026rsquo;\u003c/em\u003e encompasses the significance of trust, establishing trustworthiness, and relationship-building with South Asian communities to support engagement with genomic research. Among all participants, trust was a key factor in research-related decisions, which mitigated fears and concerns described. Several participants recommended \u0026ldquo;\u003cem\u003echampioning\u003c/em\u003e\u0026rdquo; trusted members of community to disseminate research information, and cited word-of-mouth to be the most effective and believable source of communication. In fact, when reflecting on their decision to attend the focus group, most individuals described being told of the study by trusted connections, which helped them feel reassured about participating. Such feelings were enhanced by perceptions of The University of Queensland as a trustworthy and credible institution. Representation of South Asian individuals in the research team further enhanced trustworthiness of the study, where cultural concordance within the research team helped participants feel more at ease in sharing their perspectives, without fear of judgement. In the context of genomic research, trust in the researcher to maintain data privacy was highly valued given historical mistreatment of South Asian communities and fear of discrimination.\u003c/p\u003e \u003cp\u003e Participants frequently emphasised that the importance of establishing ongoing relationships and having community researchers who understood community nuances and context enabled open communication between the researchers, study participants and the participants, allowing these interactions to be authentic. This relationship building was a complex process that involved feeling seen, clear and open communication, further encouraged discussions, increasing awareness, and thus active community involvement. This was particularly important around discussions that involved stigma and trust. During these discussions, many participants voluntarily shared details about trusted groups and organisations who may assist in disseminating research information, along with events and places where a high volume of South Asians access and attend, such as religious and spiritual gatherings. A trusting relationship was seen as essential in developing genuine partnerships with communities to support genomic research participation. This also meant maintaining that relationship after the study completion. As reflected by study participants who expressed appreciation for the ongoing communication and engagement with the SAGHA research team, and stated the importance of continuing that relationship even after the research was completed. Several participants commended the research team on their active work with community as partners and recognised the efforts with meeting the community where they are at. Feedback received from participants following focus groups indicated that they felt empowered being involved, appreciated being able to contribute to the study, and understood by the researchers who were familiar with community nuances and context.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eTo our knowledge, this is the first study to explore the attitudes and perceptions of South Asian Australians on genomic research. Positive views about genomic research were identified, with all participants recognising possible benefits for themselves, their families and/or their community. However, few individuals had participated in health research, primarily due to the lack of reach from researchers. Fear of stigma and discrimination were a major barrier to future genomic research participation, which was multi-faceted and stemmed from within the community and lived experiences of discrimination in Australia. Consequently, privacy was highly valued by participants, both in maintaining confidentiality of research participation and for genomic data security. Such concerns about data privacy and confidentiality are commonly reported among diverse groups and marginalised populations (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), many of whom have historically been excluded from health research or treated as passive subjects, leading to entrenched scepticism (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Conversely, the importance of partnership and relationship-building together, with establishing trust were key factors in facilitating research participation. Collectively, our findings underscore the importance of developing culturally tailored recruitment strategies that prioritise proactive community engagement and education.\u003c/p\u003e \u003cp\u003eSeveral frameworks have been developed to engage diverse communities in genomics research (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). These frameworks have been frequently adapted from the community-based participatory (CBPR), a collaborative approach to research that incorporates community partnership in achieving equitable outcomes for health and research (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). The CBPR consists of four domains: research context, partnership processes, intervention and research design, and outcomes (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). In line with our findings, defining and understanding the context of the research is an essential first step to enhancing genomic research participation. Researchers should understand the historical, social, cultural, community and economic factors that influence research engagement (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). For our participants, the strong lived experience of CVD, cultural factors, migration and prior experience with health inequalities were identified as influencing SAGHA enrolment. Furthermore, the unique cultural nuances of South Asian communities influenced several aspects of the research engagement, including diversity of languages, cultural connections, and fear of stigma and discrimination from within the community. Identifying these contextual factors enables community engagement through culturally appropriate and targeted means, which is crucial to ensure inclusion and improve accessibility for those who may not otherwise be reached through current research recruitment practices. This process involves using culturally sensitive communication strategies, tailoring messages to the community's linguistic needs, and leveraging local networks and events. Additionally, involving community members in the research design process and establishing feedback mechanisms can enhance relevance of the study and acceptability among community (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTrust and partnership building are key to all recruitment frameworks (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e), and are commonly reported by communities, including South Asian groups, as facilitators to research participation (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). A lack of trust frequently stems from the burden of historical injustices or negative experiences with healthcare, which can hinder engagement with genomics research (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Building long-term relationships with the community and providing tangible benefits, such as health education and improved health outcomes, are essential for fostering trust and encouraging ongoing participation. Partnerships building is a multi-faceted process involving the study funding body, research team, institution, and health service, all working together to establish and nurture relationships with the community (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). Sustained partnerships with ongoing communication are crucial for developing genuine relationships and ensuring accountability. Regular communication helps build trust by demonstrating consistency and reliability, fostering mutual understanding, and allowing for adaptability and responsiveness. Such approaches ensure accountability through transparency, shared decision-making, continuous monitoring, and a commitment to ethical practices (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Within the context of SAGHA, several strategies were implemented from the onset (i.e., grant writing stage) to aid establish trust and partnership. Specifically, these strategies encompassed: the inclusion of South Asian researchers and community leaders in the study team, the establishment of a community advisory group, and extensive community engagement via focus groups and attendance at community events. While such efforts have been key to establishing community trust and partnerships within SAGHA, it is important to acknowledge that current funding cycles are not conducive to maintaining meaningful long-term community relationships (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). Thus, novel ways to support long-term community engagement are needed, which will require a systemic approach across government, university, researchers, and individual levels.\u003c/p\u003e \u003cp\u003eOur findings should be interpreted in line with the study limitations. Firstly, focus groups were advertised and conducted in English, potentially limiting study participation among the broader community. Although no interpreters were requested during the EOI phase, two community members unexpectedly required translation assistance during the focus groups, and the team was unable to accommodate participation on the day. Future focus groups and educational sessions may benefit from having accredited, community-based interpreters available to facilitate discussions, recognising that the lingual diversity within the South Asian community could be challenging. The study also focused on genomics within the context of CVD, and therefore, attitudes towards research participation for other health conditions may vary. Despite efforts to recruit a geographically and gender diverse cohort, most participant were females. Similarly, most participants were of Indian ancestry, which is not unexpected as Indian is the most commonly cited South Asian ancestry in Australia (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Despite not capturing the complex heterogeneity of the South Asian community, findings were consistent across community groups, regardless of ancestry, ethnicity, and sex. Interestingly, targeted recruitment of specific groups (i.e. Fijian Indian, Punjabi, Tamil and Bangladeshi) in collaboration with community researchers yielded higher number of participants, highlighting the importance of targeted recruitment through community partnership and engagement. The strengths of this study included the relationship building and community engagement via a research team comprised of individuals of South Asian ancestry, and the establishment of a community advisory group. These strategies facilitated recruitment of participants to focus group and supported a safe, respectful environment conducive to sharing cultural nuances and experiences.\u003c/p\u003e \u003cp\u003eThis study highlights the views and attitudes of South Asians living in Australia regarding genomic research participation. Although attitudes towards research were generally positive, fear of stigma which could negatively impact marital and employment prospects, was noted as a barrier. Facilitators of participation included receiving a culturally specific invitation, ideally by a trusted individual, and faith in the trustworthiness of the research group and parent organisation. Cultural representation in the research team promoted trust, safety, and inclusion. Findings will have implications to community engagement in genomic research, and these community perceptions will inform the next phase of research for this study including the development of an inclusive framework for conducting genomic research within South Asian communities.\u003c/p\u003e "},{"header":"Declarations","content":"\u003cp\u003eData availability statement\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe datasets generated during and/or analysed during the current study are not publicly available to maintain participant privacy and confidentiality but are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eWe would like to acknowledge members of the SAGHA Community Advisory Group for their advice and assistance in the design phase of this pilot project. Thank you to members of the Human Studies Unit, IMB University of Queensland, Leanne Wallace, Laura Ziser and Madhura Bhadravathi Lokeshappa\u0026nbsp;for the development and use of the Human Studies Research Portal database for this project. Thank you to Focus Group participants, community members of the South Asian community in Queensland, Australia for their contribution to this work. This study was funded by a Medical Research Future Fund Genomics Health Futures Mission Streams (APP 2015961). Author TY is funded by a National Health and Medical Research Council (NHMRC) EL1 Grant (APP2009136).\u003c/p\u003e\n\u003cp\u003eAuthor contributions\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eVaishnavi Nathan,\u003csup\u003e1\u003c/sup\u003e Heena Akbar,\u003csup\u003e2\u003c/sup\u003e Aideen McInerney-Leo,\u003csup\u003e1\u003c/sup\u003e Deborah Gilroy,\u003csup\u003e3\u003c/sup\u003e Anjali Henders,\u003csup\u003e3\u003c/sup\u003e Sonia Shah\u003csup\u003e3\u003c/sup\u003e* and Tatiane Yanes\u003csup\u003e1\u003c/sup\u003e* on behalf of the South Asian Genes and Health in Australia (SAGHA) research team\u003c/p\u003e\n\u003cp\u003eAuthors TY and SS conceived the study and developed the study protocol. Authors VN, HA, DG, AH, and SS oversaw participant recruitment and data collection. Authors VN, HK, AML, SS and TY conducted initial data analysis. All authors reviewed the study findings and final manuscript. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEthical approval\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis study was approved by the University of Queensland Human Research Ethics Committee (2022/HE001388).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCompeting interests\u003c/p\u003e\n\u003cp\u003eThe authors have not competed interest to declare. \u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMartin AR, Kanai M, Kamatani Y, Okada Y, Neale BM, Daly MJ. Clinical use of current polygenic risk scores may exacerbate health disparities. Nat Genet. 2019;51(4):584\u0026ndash;91.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFatumo S, Chikowore T, Choudhury A, Ayub M, Martin AR, Kuchenbaecker K. A roadmap to increase diversity in genomic studies. 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J Empir Res Hum Res Ethics. 2019;14(1):3\u0026ndash;14.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLemke AA, Esplin ED, Goldenberg AJ, Gonzaga-Jauregui C, Hanchard NA, Harris-Wai J, et al. Addressing underrepresentation in genomics research through community engagement. The American Journal of Human Genetics. 2022;109(9):1563\u0026ndash;71.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZierhut HA, Kandikonda P, Simon EM, Donarski C, Kocher M, Ram\u0026iacute;rez M, et al. Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings. Journal of Community Genetics. 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStatistics ABo. Australia's Population by Country of Birth. 2023.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"european-journal-of-human-genetics","isNatureJournal":false,"hasQc":false,"allowDirectSubmit":false,"externalIdentity":"ejhg","sideBox":"Learn more about [European Journal of Human Genetics](http://www.nature.com/ejhg/)","snPcode":"41431","submissionUrl":"https://mts-ejhg.nature.com/cgi-bin/main.plex","title":"European Journal of Human Genetics","twitterHandle":"@ejhg_journal","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"ejp","reportingPortfolio":"Nature AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-6707183/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6707183/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003ePeople of South Asian ancestry represent approximately up around 25% of the world\u0026rsquo;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: \u0026ldquo;\u003cem\u003eGenomics Research: It\u0026rsquo;s about us\u003c/em\u003e\u0026rdquo;, \u0026ldquo;\u003cem\u003eCultural Connections\u003c/em\u003e\u0026rdquo; and \u0026ldquo;\u003cem\u003eTrust and Relationship Building\u003c/em\u003e\u0026rdquo;. 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.\u003c/p\u003e","manuscriptTitle":"“There’s no representation”: A qualitative study of attitudes and motivations towards genomic research among South Asian Australians","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-09 08:20:00","doi":"10.21203/rs.3.rs-6707183/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"revise","date":"2025-08-01T22:44:38+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"This content is not available.","date":"2025-06-27T13:26:35+00:00","index":2,"fulltext":"This content is not available."},{"type":"editorInvitedReview","content":"This content is not available.","date":"2025-06-27T01:28:37+00:00","index":1,"fulltext":"This content is not available."},{"type":"reviewerAgreed","content":"This content is not available.","date":"2025-06-06T04:40:52+00:00","index":2,"fulltext":"This content is not available."},{"type":"reviewerAgreed","content":"This content is not available.","date":"2025-06-04T07:12:31+00:00","index":1,"fulltext":"This content is not available."},{"type":"reviewersInvited","content":"","date":"2025-06-02T13:09:05+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-05-23T13:54:27+00:00","index":"","fulltext":""},{"type":"submitted","content":"European Journal of Human Genetics","date":"2025-05-23T13:15:35+00:00","index":"","fulltext":""},{"type":"checksFailed","content":"","date":"2025-05-23T11:37:55+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-05-20T11:17:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"european-journal-of-human-genetics","isNatureJournal":false,"hasQc":false,"allowDirectSubmit":false,"externalIdentity":"ejhg","sideBox":"Learn more about [European Journal of Human Genetics](http://www.nature.com/ejhg/)","snPcode":"41431","submissionUrl":"https://mts-ejhg.nature.com/cgi-bin/main.plex","title":"European Journal of Human Genetics","twitterHandle":"@ejhg_journal","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"ejp","reportingPortfolio":"Nature AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"21f7bf41-8114-4f53-b261-ede8e4ff3cd2","owner":[],"postedDate":"June 9th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[{"id":49391744,"name":"Health sciences/Medical research/Genetics research"},{"id":49391745,"name":"Scientific community and society/Social sciences/Psychology"}],"tags":[],"updatedAt":"2026-04-28T14:18:15+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-09 08:20:00","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6707183","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6707183","identity":"rs-6707183","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}