Social Determinants of Participation in Genetic Research among Puerto Ricans and in the Puerto Rican Diaspora

NIH Aug 10, 2021 | R21

Social Determinants of Participation in Genetic Research among Puerto Ricans and in the Puerto Rican Diaspora

Principal Investigator(s): DYE, TIMOTHY DE VER;

Institution: University of Rochester

FOA Number: PAR-20-255

Abstract

Puerto Ricans are especially at risk of experiencing distributive injustice, or the structural exclusion from participating in genetic research that could potentially benefit them. Our existing collaborative team from the University of Puerto Rico and the University of Rochester proposes to extend previously-conducted pilot efforts around genetic research participation among Puerto Ricans to include the entire country of Puerto Rico and the Puerto Rican diaspora residing in the United States to better understand the impact of diaspora status, attitudes, beliefs, and experiences on likelihood of participating in research and to develop participant-centered strategies for their inclusion in research. Such work could contribute to reducing the justice-gap that exists among Puerto Ricans in genetic research.

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
R21

Project Number:
R21HG012136

Start Date:
Aug 10, 2021

End Date:
Jul 31, 2023

PROJECT TERMS:

Address, Attitude, Belief, Belmont Report, benefit sharing, Bioethics, Birth, Caribbean region, Catalogs, Categories, Communities, Control Locus, Country, demographics, Ethics, Ethnic Origin, Exclusion, experience, Future, Genetic, genetic architecture, Genetic Determinism, Genetic Research, Genome, genome wide association study, Genomics, Health, health inequalities, Hispanics, Home, human disease, Hurricane, improved, Individual, Institution, interest, Island, Justice, Latin America, Latin American, Latinx, Learning, marginalized population, member, Methods, Minority-Serving Institution, Modeling, National Human Genome Research Institute, outreach, Participant, Pattern, Perception, Pilot Projects, Population, population health, Population Research, Positioning Attribute, programs, Puerto Rican, Puerto Rico, recruit, Research, Research Personnel, research study, residence, Risk, risk sharing, Science, social determinants, Societies, Structure, Surveys, Territoriality, tool, Underrepresented Populations, United States, United States National Institutes of Health, Universities, Ursidae Family, Variant, willingness, Work

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Social Determinants of Participation in Genetic Research among Puerto Ricans and in the Puerto Rican Diaspora

Abstract

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