Doctoral Dissertation Research: Latinidad in Precision Medicine: Emergence of Imagined Genetic Communities

Barnard College, New York NY

Investigators

Abstract

Precision medicine efforts aim to tailor healthcare to individuals by devising the most effective treatments based on genetic profiles. But how are these efforts implemented within genetically diverse populations who nonetheless share perceived common ethnicities? This project investigates these issues within the context of the Latinx population, which is very diverse genetically, but is one that the medical community often mischaracterizes as they provide research reports, recruit medical study participants and devise public educational materials. The project analyzes how precision medicine investigators think about and act upon attributes of the Latinx population as a target community. It will analyze the approaches, logics, and frameworks used to make sense of group identity. It will also investigate how these factors may contribute to racialized concepts of human difference among and within populations. More broadly, the project considers how the concepts of biology and race might affect broader political understandings and processes pertaining to Latinx people, and thus provides input to policy makers in medical communities and beyond as they strive to acknowledge and support racial diversity in the United States. We know that racialized concepts of human, and therefore genomic, differences persist in biomedicine, yet the relevance of race and ethnicity in genomics is contested. Focusing on Latinx populations for precision medicine presents a paradox because the Latinx label is a broad one that nonetheless contains strong diversity in genetic profiles. The first study phase will be a content analysis of 100 precision medicine texts, such as research reports, public education materials, and participant recruitment materials, which reflect racial and ethnic identities of participants, data, or bio-specimens. The second study phase will include ethnographic observations at 15-20 precision medicine events as well as in-depth key-informant interviews with a target of 40 precision medicine investigators. Finally, the project will conduct semi-structured interviews with 60 Latinx community members relating to genomics, precision medicine and Latinx identity. Through examination of investigator and research participant perspectives, this study will address how social categorizations are constructed in biomedicine and in contemporary life more broadly. Findings from the project will provide insight into sociological theories regarding how social categorizations are engaged, reinforced, and/or constructed in biomedicine; it will also inform sociological theories of racial identity and medical practice. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.