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

> **NIH NIH R21** · UNIVERSITY OF ROCHESTER · 2022 · $154,000

## Abstract

The core bioethical principle of justice - that is, that all populations should equally benefit from, share the risks
of, and have the opportunity to participate in research – is central to contemporary ethical guidance governing
the conduct of studies, described in the Belmont Report. Distributive justice and oppression are two related
constructs that extend this core Belmont principle further toward the deliberate inclusion of marginalized
populations, equitably, in research. Puerto Ricans are especially at risk of experiencing distributive injustice, or
the structural exclusion from participating in genetic research that could potentially benefit them. Limiting
Puerto Rican participation in genetic research restricts researchers’ ability to learn more from unique Puerto
Rican genomes and for Puerto Ricans to benefit from such research. Our prior research shows that – among
Hispanic/ Latinx populations globally – diaspora group (born/live in home country, migrated to country outside
Latin America and the Caribbean (LAC), and born and live in a country outside LAC) – is an important
determinant of genetic research participation, even after controlling for attitudes, experiences, and
demographics. Little is known about the interests and ability of Puerto Ricans to participate in genetic research,
despite the magnitude and importance of the Puerto Rican diaspora in the United States. Operationalizing
Freire’s community-engagement principles of educação popular, conscientização, and diálogo, we propose to
extend our previously-conducted pilot effort 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: 1)
Identify patterns, themes, priorities, barriers, and opportunities in genetic research participation and their
variation among community members in Puerto Rico and within the Puerto Rican diaspora in the mainland
United States through qualitative engagement, and 2) Quantitatively model attitudes, intentions, and
perceptions with participating in genetic research among Puerto Ricans residing on the island and Puerto
Ricans living in the mainland United States through conducting an online survey. All methods have been
developed and validated by the research team previously. The original team of researchers conducting the
pilot study from the University of Puerto Rico’s Research Centers in Minority Institutions (RCMI) program and
the University of Rochester’s Global and Territorial Health Research Network (GTHRN) program will implement
this new project using existing validated tools, and will disseminate and use the results in their own future
genomic research studies. Better understanding the context and associations of Puerto Rican engagement and
participation in genetic research – particularly in the post-2017 Hurricane era – could contribute to more
appropriate, justice-centered strategies for addressing population health and research ...

## Key facts

- **NIH application ID:** 10465281
- **Project number:** 5R21HG012136-02
- **Recipient organization:** UNIVERSITY OF ROCHESTER
- **Principal Investigator:** TIMOTHY De Ver DYE
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $154,000
- **Award type:** 5
- **Project period:** 2021-08-10 → 2024-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10465281

## Citation

> US National Institutes of Health, RePORTER application 10465281, Social Determinants of Participation in Genetic Research among Puerto Ricans and in the Puerto Rican Diaspora (5R21HG012136-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10465281. Licensed CC0.

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