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

Return to Search Results

Share

Related Projects

R21

Exploring Choice of Law Challenges in Multi-Site Precision Medicine Research

Through the combined study of individual variation in genes, environment, and lifestyle, precision medicine research offers the potential for…

R21

Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

Sexual and gender minorities (SGMs) experience significant disparities in health and health care. These inequities result from complex interactions…

R21

Developing Clinical Translational Tools to Communicate Genetic Risk to Individuals who are at Clinical High Risk for Psychosis

Great strides are being made in identifying early signs that put people in a 'high risk state' for illnesses, enabling identification…

R21

Understanding All of Us Enrollees and Decliners Motivations to Enhance Recruitment and Retention

The proposed project is a qualitative study of recruitment and retention into the All of Us Research Program (AoURP) at a federally qualified health…

R21

Using Ethics and User-Centered Design to Create Templates for EHR-Mediated Return of Genetic Test Results

Patient engagement is critical for implementation of the genomic component of precision medicine--with care taken to include the perspectives and…

R21

Appropriation, Adaptation, and Political Mobilization of Genomics Research

This project will analyze how US white nationalists are appropriating, adapting, politically mobilizing and changing themselves in response to…

R21

A Community-Based Approach to Overcoming Barriers to Cascade Screening for Long QT Syndrome

While the value of identifying individuals in the population who carry `actionable' variants and screening their relatives (i.e. cascade…

R21

Adoption of Non-Invasive Prenatal Testing in Diverse Populations: A Multilevel Approach

Non-invasive prenatal testing (NIPT), a cell-free DNA screening test of fetal chromosomal abnormalities using maternal plasma, has been heralded as ?…

R21

Demographic Patterns of Eugenic Sterilization in California

From the passage of the country's first sterilization law in Indiana in 1907 until the 1960s approximately 60,000 people were sterilized based…

R21

Developing and Evaluating Patient Centered Tools for Clinical Classification of Variants of Uncertain Significance

Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases.…

R21

Genomics-based Technologies: Access and Reimbursement Issues

Genomics-based technologies are increasingly used in clinical care and are highly relevant to public health because of their potential use in…

R21

Preparing for Emerging Applications of Noninvasive Prenatal Testing

Noninvasive prenatal genetic testing, which utilizes cell-free fetal DNA and advances in sequencing technology, is revolutionizing the practice of…

R21

Dyadic Influence in Genomic Medicine: Couples' Beliefs, Disclosures, & WEllbeing

Genomic medicine has, on one hand, the power to predict potentially debilitating disease before its actual onset; on the other hand, it creates…

R21

Mapping the Intersection: Self-identification and Genetic Ancestry

Assignment of individuals to categories of race, ethnicity and ancestry impacts health and public policy, yet the practice remains both…

R21

Assessing the utility of genomic counseling for common complex diseases

This application seeks to better understand the needs of patients undergoing genomic testing with respect to the understanding of an adaptation to…

R21

Biobanking at Birth: Parental Attitudes towards the Use of Perinatal Samples

The ability to utilize biospecimens collected at the time of birth for research that integrates genetic variation, social and environmental exposures…

R21

Interactive Multimedia and Biorepository Informed Consent

The long-term goal of this research is to develop multimedia technology and interactive instructional strategies to improve the effectiveness and…

R21

The impact of uncertainty in genome-wide testing for Autism Spectrum Disorder

Chromosomal Microarray Analysis (CMA) is a genome-wide technology that allows for identification of genomic alterations, such as deletions and…

R21

Challenges of Informed Consent in Return of Data from Genomic Research

Genomic data, including findings incidental to the purpose for which a study is undertaken, can contain information of use and importance to research…

R21

Return of Research Results from samples obtained for Newborn Screening

In order to maximize the potential benefit of research using newborn screening residual dried blood samples (DBS), a paradigm shift will be necessary…

R21

Returning Research Results of Pediatric Genomic Research to Participants

The specific aim of this project is to determine what criteria should govern return of individual results of pediatric genomic research, using…

R21

The Presumptive Case against Returning Individual Results in Biobanking Research

Genomic biobank research, like much scientific and biomedical research, aims to produce generalizable knowledge of collective benefit to humans and…

R21

Genetic Education to Promote Counseling Attendance after Surgical Treatment

In 2009, 192,370 new cases of female breast cancer (BC) were diagnosed in the U.S. Of these cases, 5%- 10% were attributed to BRCA mutations. This…

R21

Secondary Uses of Health Information: Patient Preferences for Sharing and Consent

Health information technology (HIT) is believed to be central to improving the quality and cost effectiveness of health care in the United States. As…

R21

Communicating Genetic Information for Obesity

Obesity rates in the United States have escalated in recent decades and present a growing challenge in public health prevention efforts. Advances in…

R21

Response to Testing Among Individual Consumers of DTC Personal Genomics Services

Results from several genome-wide association (GWA) studies have recently emerged showcasing the discovery of specific genetic variations found to be…

R21

Ethics and Public Attitudes Concerning the Use of Archived Biological Samples

Most discussion of the ethical challenges raised by the growth of research biobanks relies on the assumption that the only ethically relevant…

R21

Assessing the Impact of DTC Genetic Testing to Inform Policy Development

This application proposes to assess the societal impact of genetic tests offered directly to consumers (DTC) and to develop policy options for DTC…

R21

Developing a Family-Centered Approach for Genetic Counseling: A New Paradigm

This exploratory pilot project aims to evaluate the feasibility and initial efficacy of an innovative family-centered approach to genetic counseling…

R21

Genetics Testing in Midwest American Indians

The goal of this two-year project is to uncover issues related to genetics testing among the Native American populations of the Midwest. A project of…
+ Search results