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精准医学研究中对交叉性框架的需求。

The need for an intersectionality framework in precision medicine research.

机构信息

Center for Precision Medicine and Genomics, Department of Medicine, New York, NY, USA; Division of Ethics, Department of Medical Humanities and Ethics, New York, NY, USA.

Stacey Nicholas Office of Access and Inclusion, University of California Irvine, Irvine, CA, USA.

出版信息

Am J Hum Genet. 2023 Oct 5;110(10):1609-1615. doi: 10.1016/j.ajhg.2023.08.013.

Abstract

Precision medicine research has seen growing efforts to increase participation of communities that have been historically underrepresented in biomedical research. Marginalized racial and ethnic communities have received particular attention, toward the goal of improving the generalizability of scientific knowledge and promoting health equity. Against this backdrop, research has highlighted three key issues that could impede the promise of precision medicine research: issues surrounding (dis)trust and representation, challenges in translational efforts to improve health outcomes, and the need for responsive community engagement. Existing efforts to address these challenges have predominantly centered on single-dimensional demographic criteria such as race, ethnicity, or sex, while overlooking how these and additional variables, such as disability, gender identity, and socioeconomic factors, can confound and jointly impact research participation. We argue that increasing cohort diversity and the responsiveness of precision medicine research studies to community needs requires an approach that transcends conventional boundaries and embraces a more nuanced, multi-layered, and intersectional framework for data collection, analyses, and implementation. We draw attention to gaps in existing work, highlight how overlapping layers of marginalization might shape and substantiate one another and affect the precision-medicine research cycle, and put forth strategies to facilitate equitable advantages from precision-medicine research to diverse participants and internally heterogeneous communities.

摘要

精准医学研究越来越重视增加历史上在生物医学研究中代表性不足的社区的参与度。边缘化的种族和族裔社区受到了特别关注,目标是提高科学知识的普遍性和促进健康公平。在此背景下,研究强调了可能阻碍精准医学研究前景的三个关键问题:(信任和代表性)问题、改善健康结果的转化努力方面的挑战,以及对社区参与的响应需求。现有解决这些挑战的努力主要集中在单一维度的人口统计标准上,如种族、民族或性别,而忽略了这些标准以及其他变量(如残疾、性别认同和社会经济因素)如何混淆并共同影响研究参与。我们认为,增加队列多样性和精准医学研究对社区需求的响应能力需要一种超越传统界限的方法,采用更细致、多层次和交叉的框架来进行数据收集、分析和实施。我们提请注意现有工作中的差距,强调重叠的边缘化层次如何相互影响和影响精准医学研究周期,并提出策略,以促进不同参与者和内部异质社区从精准医学研究中获得公平优势。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6cdc/10577071/4003a34baa78/fx1.jpg

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