Genetic research participation among culturally and linguistically diverse (CALD) populations remains a critical challenge, with recruitment efforts often hindered by cultural and language barriers. These obstacles not only impede the diversification of genomic medicine but also exacerbate disparities in healthcare outcomes. To shed light on this issue, we conducted stakeholder discovery exercises on individuals from various CALD community hotspots around Brisbane, Australia, to understand attitudes, concerns, and logistical challenges related to participation in genetic studies.
Preliminary findings from individuals of East Asian/Southeast Asian ancestries (n=39; 16 men, 23 women, age range 35-90 years) reveal significant gaps in awareness and motivation for participating in medical research programs. The majority of participants (52%) were unaware of the existence of genetic studies. When asked about potential reasons that can motivate participation, 46% cited personal experience with the disease as the primary motivator. Participants indicated preference for in-person (38%) and online-based (51%) research engagement over mail-outs (11%). Overall, participants reveal strong willingness (67%) to share health-related information with researchers and agreement (64%) that medical research is very important for improving health outcomes in CALD communities. Finally, 31% of participants voluntarily provided contact details for further engagement in research projects.
These insights challenge existing assumptions and underscore the need for tailored approaches to study design and recruitment strategies. During the meeting, we will share the QIMRB Genetics for Diverse Ancestries conceptual framework, designed to iteratively address these insights and target CALD populations affected by age-related diseases. We will also provide updates on engaging other ancestries, and discuss culture-specific barriers to genetic research participation. We will explore the role of public institutions, diasporic scientists and CALD community leadership in supporting diversity and inclusivity in genetic research. By addressing these challenges and leveraging diverse perspectives, we can foster a more equitable and inclusive approach to genomic medicine.