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

Published online by Cambridge University Press:  11 April 2025

Celinés Rodríguez
Affiliation:
University of Puerto Rico Medical Sciences Campus
Celines Rodriguez-Acevedo
Affiliation:
School of Health Professions, Puerto Rico Genetics Laboratory, Medical Sciences Campus, University of Puerto Rico, Rio Piedras, PR
Paola Giusti-Rodriguez
Affiliation:
School of Medicine, Psychiatry Department, University of Florida
Carmen J. Buxo
Affiliation:
School of Dental Medicine, Medical Sciences Campus, University of Puerto Rico, Rio Piedras, PR
Elinette Albino
Affiliation:
School of Health Professions, Puerto Rico Genetics Laboratory, Medical Sciences Campus, University of Puerto Rico, Rio Piedras, PR School of Health Professions, Clinical Laboratory Sciences Program, Medical Sciences Campus, University of Puerto Rico, Rio Piedras, PR
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Abstract

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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.

Type
Health Equity and Community Engagement
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
© The Author(s), 2025. The Association for Clinical and Translational Science