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

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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.