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