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Exploring the Influence of Genetic Literacy on Research Participation Among Underrepresented Populations 

Education and Research Strategies
  • Primary Categories:
    • General Education
  • Secondary Categories:
    • General Education
Introduction:
Genomic sequencing holds tremendous promise in healthcare by enabling the early detection of actionable genetic conditions, thereby supporting preventive measures to mitigate adverse health outcomes. However, mistrust and misinformation about genetics and genomics, particularly within historically marginalized communities, continue to pose significant barriers to achieving equitable public health benefits. This study examines the effectiveness of multimedia educational modules in enhancing genetic health literacy and increasing willingness to participate in genomic research. These modules were co-developed by a transdisciplinary team of clinicians and researchers at UNC in collaboration with a Community Research Board (CRB) and guided by dissemination and implementation science frameworks to enhance accessibility, cultural relevance, and multilingual delivery. We hypothesize that these modules will promote meaningful engagement with diverse and underserved populations, who are often underrepresented in genetic and genomic research, and will subsequently increase their likelihood of participating in future research.

 

Methods:
This ongoing mixed-methods study is being conducted at community health events in North Carolina, targeting adults with diverse demographic backgrounds. Participants are randomly assigned to view one of two modules, "Genetic Testing and Screening" or "Age-Based Genomic Screening," delivered via either an animated video or a self-directed website. Surveys assessing genomic knowledge via the Genomic Knowledge Scale (GKS) and willingness to participate in genomic research were administered pre- and post-intervention. Key demographic data collected include race, gender, and educational attainment. Preliminary data from 101 participants have been analyzed using paired t-tests and a 2x2 ANOVA to evaluate the effects of module content and delivery method. A subset of participants (N=30) expressing willingness to be recontacted are participating in semi-structured interviews to explore their learning preferences and attitudes toward genetic and genomic research. Recruitment is ongoing, and the final sample is expected to exceed 350 participants.

 

Results:
A preliminary analytic sample (N=101) was diverse, with 56.4% female participants and a mean age of 44.13 years (SD=15.59). Racial composition included 29.7% American Indian, 26.7% Black or African American, 22.8% Asian, and 16.8% White individuals. Paired t-tests demonstrated a significant increase in genetic and genomic knowledge as measured by the GKS (p=.05). Participants also showed significant improvements in their perceived ability to identify disease-related gene variants (p<.001) and their understanding of the actions required upon identifying such variants (p=.001). Condition-specific results regarding differences between module content and delivery methods are under analysis.

Conclusion:
This study is novel in its integration of dissemination and implementation frameworks into the development of educational modules, ensuring contextual relevance to diverse communities. By leveraging frameworks such as Designing for Dissemination and Sustainability, and the Consolidated Framework for Implementation Research, the modules rigorously and transparently address critical barriers to genetic and genomic research participation, including mistrust, misinformation, and accessibility. Co-developed by a collaborative academic-community research team, the modules represent an innovative strategy for fostering trust, improving genetic health literacy, and reducing barriers to participation in genetic and genomic research. Preliminary findings suggest the modules’ potential effectiveness in enhancing knowledge and confidence about genetic information. Ongoing qualitative research and recruitment will provide further insights into participant preferences. This work advances the application of D&I science to genomic education and proposes a scalable approach for building genetic health literacy to improve willingness to participate in genetic and genomic research.

 

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