313 Engaging minority and vulnerable communities in genomic research: Navigating ethical, cultural, and practical considerations

Objectives/Goals: This study explores strategies to engage minority and vulnerable populations, including individuals with disabilities, in genomics research. It addresses the ethical, legal, and social implications (ELSI) of human research, with emphasis on data management and culturally sensitive return of actionable results. Methods/Study Population: This study will utilize a mixed-methods approach, combining quantitative surveys with qualitative interviews and focus groups to gather data from minority populations and individuals with disabilities in genomics research. Key stakeholders, including community leaders and healthcare providers, will be engaged to ensure the study’s design reflects community needs and values. Data management practices will be evaluated to align with ethical standards and community expectations. Additionally, the study will examine how actionable results can be effectively communicated to participants, considering cultural and individual differences. Results/Anticipated Results: Preliminary findings suggest that a one-size-fits-all approach to community engagement in genomic research is ineffective. This research emphasizes the importance of engaging diverse populations from the very beginning of the study to ensure that their voices are heard, and their concerns are adequately addressed. Preliminary data reveal significant variations in how communities perceive genetic research, highlighting the need for culturally tailored communication strategies. The proposed study also identifies key barriers to participation, such as mistrust of the research process and concerns about data privacy, which must be addressed to enhance community engagement. Discussion/Significance of Impact: Successful community engagement in genomic research requires understanding the cultural and social dynamics of the populations involved. Researchers must adopt flexible, community-centered approaches that address the unique needs of minority and vulnerable groups, improving inclusivity and leading to more equitable health outcomes.

Authors

Institutions

Publication Details

Journal
Journal of Clinical and Translational Science
Published
2025-03-25
DOI
https://doi.org/10.1017/cts.2024.945
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00
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article

313 Engaging minority and vulnerable communities in genomic research: Navigating ethical, cultural, and practical considerations

Carmen J. Buxó, C.P. Suarez Rodriguez, Paola Giusti‐Rodríguez, Celines Rodriguez-Acevedo et al.
1 links
Journal of Clinical and Translational Science
Ethics in Clinical Research
article

313 Engaging minority and vulnerable communities in genomic research: Navigating ethical, cultural, and practical considerations

Carmen J. Buxó, C.P. Suarez Rodriguez, Paola Giusti‐Rodríguez, Celines Rodriguez-Acevedo, Elinette Albino
article en

Abstract

Objectives/Goals: This study explores strategies to engage minority and vulnerable populations, including individuals with disabilities, in genomics research. It addresses the ethical, legal, and social implications (ELSI) of human research, with emphasis on data management and culturally sensitive return of actionable results. Methods/Study Population: This study will utilize a mixed-methods approach, combining quantitative surveys with qualitative interviews and focus groups to gather data from minority populations and individuals with disabilities in genomics research. Key stakeholders, including community leaders and healthcare providers, will be engaged to ensure the study’s design reflects community needs and values. Data management practices will be evaluated to align with ethical standards and community expectations. Additionally, the study will examine how actionable results can be effectively communicated to participants, considering cultural and individual differences. Results/Anticipated Results: Preliminary findings suggest that a one-size-fits-all approach to community engagement in genomic research is ineffective. This research emphasizes the importance of engaging diverse populations from the very beginning of the study to ensure that their voices are heard, and their concerns are adequately addressed. Preliminary data reveal significant variations in how communities perceive genetic research, highlighting the need for culturally tailored communication strategies. The proposed study also identifies key barriers to participation, such as mistrust of the research process and concerns about data privacy, which must be addressed to enhance community engagement. Discussion/Significance of Impact: Successful community engagement in genomic research requires understanding the cultural and social dynamics of the populations involved. Researchers must adopt flexible, community-centered approaches that address the unique needs of minority and vulnerable groups, improving inclusivity and leading to more equitable health outcomes.

Journal of Clinical and Translational ScienceVol. 9(s1)
University of Puerto Rico, Medical Sciences Campus (PR), University of Puerto Rico at Río Piedras (PR), University of Florida (US), Florida College (US)
Openalex Percentile: Top 92%
Ethics in Clinical Research
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