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

• 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
• 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

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.

正义的核心生物伦理原则 - 也就是说，所有人口应同样受益，分享风险 并且有机会参与研究 - 是当代道德指导的核心 贝尔蒙特报告中描述的研究的进行。分配正义和意见是两个相关的 将这种核心原则扩展到有意包含边缘化的构造 人口在研究中同样。波多黎各人尤其有遭受分配伤害或 结构性排除在参与可能受益于他们的遗传研究中。限制 波多黎各人参与遗传研究，限制了研究人员从独特的波多黎各那里学习更多的能力 Rican基因组和波多黎各人可以从此类研究中受益。我们先前的研究表明 - 全球西班牙裔/拉丁裔人口 - 侨民集团（出生/居住在本国，移居到外面的国家 拉丁美洲和加勒比海（LAC），出生并居住在LAC以外的一个国家） - 重要 遗传研究参与的决定因素，即使在控制与会者，经验和 人口统计。关于波多黎各人参与遗传研究的利益和能力知之甚少， 尽管波多黎各人散居在美国的幅度和重要性。操作 弗雷雷（Freire）的社区参与原则是受欢迎，认真和诊断的，我们建议 扩展我们以前围绕波多黎各人遗传研究参与的试验努力 包括整个波多黎各的国家和居住在美国的波多黎各人散居到：1） 识别遗传研究参与中的模式，主题，优先事项，障碍和机会 波多黎各和波多黎各人散居大陆的社区成员之间的差异 美国通过定性参与，2）定量对吸引，意图和 居住在岛上和波多黎各的波多黎各人之间参与遗传研究的看法 居住在美国大陆的里奇亚人通过进行在线调查。所有方法都是 先前由研究团队开发和验证。最初的研究人员团队进行了 波多黎各大学的少数民族研究中心（RCMI）计划的试点研究和 罗切斯特大学的全球和领土健康研究网络（GTHRN）计划将实施 这个新项目使用现有验证的工具，并将在自己的未来传播和使用结果 基因组研究。更好地了解波多黎各参与的背景和关联 参与遗传研究，特别是在2017年后飓风时代 - 可能有助于更多 适当，以司法为中心的策略来满足人口健康和研究需求。分享发现 随着RCMI，CTSA，PRC和其他机构以及社区的研究人员，将增强 遗传研究以包括波多黎各人口，因此有助于减轻现有的正义差距。