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Enhancing Inclusivity in Public Health and Genetic Research Through Culturally and Linguistically-Tailored Genetics Education Materials

Health Services and Implementation
  • Primary Categories:
    • Health Care Inequities and health disparities
  • Secondary Categories:
    • Health Care Inequities and health disparities
Introduction:
Unequal representation in genomic research among minority populations arises from historically inequitable research practices, mistrust of biomedical research, and a lack of access to or awareness of research opportunities. The lack of genetic diversity in research not only perpetuates disparities for underrepresented groups but also undermines the development of inclusive scientific knowledge, limiting the ability to create healthcare interventions that are effective for everyone. These challenges disproportionately affect underrepresented groups, including those with linguistic and cultural barriers, highlighting the urgent need to engage diverse populations in genomic research to ensure that its benefits are broadly shared and its potential fully realized. Research shows that multilingual, culturally responsive educational resources are powerful tools for addressing these disparities in research participation. By tailoring content to resonate with diverse cultural values, beliefs, and linguistic needs, such resources can improve health literacy, foster trust, and empower individuals to make informed decisions about research participation. enhance research participation among underrepresented groups. For example, culturally adapted materials can demystify complex genomic concepts, address concerns about research practices and privacy, and highlight the relevance of studies to specific communities, ultimately increasing engagement and participation.

Methods:
To address the critical need for plain language materials to facilitate engagement, the Age-Based Genomic Screening (ABGS) study formed an academic-community partnership to co-develop educational modules in English aimed at building public genetic literacy and awareness of genetic and genomic research. The co-development process followed the four-phase Designing for Dissemination and Sustainability (D4DS) methodology (Conceptualization, Design, Implementation, Impact) to ensure the modules were contextually relevant fit, promoted health equity, and could achieve long-term sustainability of the modules.  Recognizing the importance of expanding accessibility, an ABGS Spanish translation team was formed to adapt the modules into Spanish. This team comprised bilingual members from diverse cultural and professional backgrounds, ensuring that linguistic and cultural nuances were thoughtfully addressed. The translation and adaptation process went beyond direct translation to include transcreation, adapting content to ensure sociocultural relevance and resonance within Spanish-speaking communities. Through a robust and transparent process, each member provided feedback, allowing iterative modifications to ensure the final resources are both linguistically accurate and culturally appropriate.

Results:
An explanatory mixed-methods pilot study is currently underway to examine the impact of bilingual educational content and delivery methods on genomic literacy and research engagement within the Latine community. Using pre- and post-educational surveys, we are measuring changes in genomic knowledge while also evaluating perceptions of the quality and cultural relevance of the Spanish-translated modules. Semi-structured interviews conducted by members of the Spanish translation team with survey respondents who consented to recontact are exploring community members' preferences for learning about and receiving educational material about genetics and genomics in the future. These interviews also aim to assess their receptiveness to genomic research participation after engaging with content, providing valuable insights into how to optimize educational strategies and foster greater engagement in genomic research

Conclusion:
The use of methodology from dissemination and implementation science ensured a rigorous and iterative process for the transcreation of g the genetics and genomics educational modules into Spanish. By making genetic information accessible to non-English-speaking populations, we aim to enhance equity in public health efforts and empower individuals to make informed healthcare decisions. With nearly one-fifth of the U.S. population identifying as Latino/a/x, including many Spanish-only speakers from diverse cultural backgrounds, the growing size and diversity of this population underscore the increasing need for Spanish health services and resources. As Spanish is the second most commonly spoken language in the U.S., the development of culturally appropriate Spanish-language materials is essential for fostering inclusivity in public health and genomic research.

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