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

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， 并有机会参与研究-是当代伦理指导的核心， 研究的进行，如贝尔蒙特报告所述。分配正义和压迫是两个相关的 将这一核心贝尔蒙特原则进一步延伸到有意纳入边缘化群体的结构 公平地，在研究中。波多黎各人尤其有可能经历分配不公， 在结构上被排除在可能使他们受益的基因研究之外。限制 波多黎各参与遗传研究限制了研究人员从独特的波多黎各了解更多信息的能力 波多黎各人的基因组和波多黎各人受益于这种研究。我们之前的研究表明， 全球西班牙裔/拉丁裔人口-散居群体（出生/居住在本国，迁移到国外 拉丁美洲和加勒比地区（LAC），出生和生活在LAC以外的国家）-是一个重要的 基因研究参与的决定因素，即使在控制了态度，经验， 人口统计学人们对波多黎各人参与遗传研究的兴趣和能力知之甚少， 尽管在美国的波多黎各侨民数量庞大，地位重要。落实 根据弗莱雷的大众教育（educação popular）、对话（diálogo）和对话（educação popular）等社区参与原则，我们建议 扩大我们以前围绕波多黎各人参与遗传研究开展的试点工作， 包括整个波多黎各和居住在美国的波多黎各侨民，以便： 确定参与遗传研究的模式、主题、优先事项、障碍和机会， 在波多黎各社区成员之间和在大陆的波多黎各侨民之间的差异 美国通过定性参与，和2）量化模型的态度，意图， 居住在岛上和波多黎各的波多黎各人对参与遗传研究的看法 在美国大陆生活的波多黎各人通过进行在线调查。所有的方法都是 由研究团队先前开发并验证。最初的研究小组进行了 波多黎各大学少数民族机构研究中心（RCMI）计划的试点研究， 罗切斯特大学的全球和地区健康研究网络（GTHRN）计划将实施 这一新项目使用现有的有效工具，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年飓风后的时代--可以为更多的人做出贡献。 以公正为中心的适当战略，以满足人口健康和研究需求。分享调查结果 与RCMI，CTSA，PRC和其他机构的研究人员以及社区合作，将提高 遗传学研究包括波多黎各人口，从而有助于缩小现有的司法差距。

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.