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

精确医学的努力旨在通过根据基因图谱设计最有效的治疗方法，为个人量身定做医疗保健。但是，这些努力是如何在基因多样化的人群中实施的，尽管他们拥有共同的种族呢？该项目在拉丁裔人群的背景下调查这些问题，拉丁裔人群在基因上非常多样化，但医学界在提供研究报告、招募医学研究参与者和设计公共教育材料时，经常错误地描述这些问题。该项目分析了精准医学研究人员如何考虑拉丁裔人口作为目标社区的属性并对其采取行动。它将分析用于理解群体身份的方法、逻辑和框架。它还将调查这些因素可能如何促成人与人之间和人与人之间差异的种族主义概念。更广泛地说，该项目考虑了生物学和种族的概念可能会如何影响与拉丁裔人有关的更广泛的政治理解和程序，从而为医学界和其他领域的政策制定者提供意见，因为他们正在努力承认和支持美国的种族多样性。我们知道，人类的种族概念，因此基因组的差异，在生物医学中仍然存在，但种族和民族在基因组学中的相关性存在争议。专注于拉丁裔人群的精确医学是一个悖论，因为拉丁裔的标签是一个宽泛的标签，但在基因图谱中包含强大的多样性。第一个研究阶段将对100篇精准医学文本进行内容分析，如研究报告、公众教育材料和参与者招募材料，这些材料反映了参与者的种族和民族身份、数据或生物标本。第二个研究阶段将包括对15-20个精确医学事件的人种学观察，以及对40名精确医学调查人员的关键线人的深入访谈。最后，该项目将对60名拉丁裔社区成员进行半结构化访谈，涉及基因组学、精准医学和拉丁裔身份。通过考察研究者和研究参与者的视角，这项研究将探讨在生物医学和更广泛的当代生活中社会分类是如何构建的。该项目的发现将提供有关社会分类如何在生物医学中参与、加强和/或构建的社会学理论的洞察；它还将为种族认同和医疗实践的社会学理论提供信息。该奖项反映了NSF的法定使命，并通过使用基金会的智力价值和更广泛的影响审查标准进行评估，被认为值得支持。

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.