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

波多黎各人和波多黎各侨民参与基因研究的社会决定因素

基本信息

批准号：
10301228
负责人：
TIMOTHY De Ver DYE
金额：
$ 26.95万
依托单位：
UNIVERSITY OF ROCHESTER
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-08-10 至 2023-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10301228
关键词：
Address Attitude Belief Belmont Report Bioethics Birth Caribbean region Catalogs Categories Communities Control Locus Country Ethics Ethnic Origin Exclusion Future Genetic Genetic Determinism Genetic Research Genome Genomics Health Hispanics Home Hurricane Individual Institution Island Justice Latin America Latin American Latinx Learning Methods Minority-Serving Institution Modeling National Human Genome Research Institute Participant Pattern Perception Pilot Projects Population Population Research Positioning Attribute Puerto Rican Puerto Rico Research Research Personnel Risk Science Societies Structure Surveys Territoriality Underrepresented Populations United States United States National Institutes of Health Universities Ursidae Family Variant Work benefit sharing demographics experience genetic architecture genome wide association study health inequalities human disease improved interest marginalized population member outreach population health programs recruit research study residence risk sharing social determinants tool willingness

项目摘要

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 needs. Sharing findings with researchers at RCMI, CTSA, PRC and other institutions, and with communities, will enhance the ability of genetic research studies to include Puerto Rican populations, hence helping alleviate the existing justice-gap.

公正的核心生物伦理原则——即所有人口都应平等受益，分担风险