The Ethics of Inclusion: Diversity in Precision Medicine Research

包容性伦理：精准医学研究的多样性

• 批准号: 9789349
• 负责人: Sandra Soo-Jin Lee
• 金额: $ 67.27万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-02-23 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9789349
• 关键词: Address; Behavioral; Biomedical Research; Categories; Collection; Communities; Complex; Conceptions; Data; Development; Electronic Health Record; Ensure; Ethics; Ethnic Origin; Europe; European; Genetic; Genomics; Goals; Heterogeneity; Individual; Interview; Logistics; Maps; Participant; Patient Self-Report; Patients; Policies; Population; Race; Research; Research Personnel; Resources; Risk Factors; Sampling; Time; Underrepresented Groups; United States; design; disorder risk; health disparity; novel; outreach; precision medicine; programs; recruit; research study; response; social

PROJECT SUMMARY A major challenge for precision medicine research is including historically under-represented groups in numbers sufficient to ensure statistically valid inferences of the influence of relevant risk factors, including genetic contributions to disease risk. Precision medicine researchers have recognized the critical need to enhance diversity and have implemented a wide variety of approaches to achieve this. All such approaches, however, are shaped by stakeholders’ understandings of what kinds of diversity matter, the local logistical constraints under which precision medicine research is actually being conducted, and the responses of communities to those approaches. Investigating these complex factors from the perspectives of multiple stakeholders in precision medicine research will be essential to effectively address longstanding inequities in genomic and related forms of precision medicine research. This application seeks to take advantage of the current proliferation of diversity and inclusion practices to study their heterogeneity, commonalities, and effects on diversifying participation in precision medicine research. We will determine through in-depth analyses of PMR studies how concepts such as definitions of diversity (e.g. genetic ancestry markers, self-reported race and ethnicity) impact practices such as retention, engagement, and return of results. Taking a lifecourse perspective to research relationships, we aim to assess how approaches towards diversity and inclusion are managed in tandem with other research goals and the implications of specific trade-offs that result. To achieve our study objectives, we will fulfill the following aims: (1) identify scientific and sociopolitical justifications for goals of inclusion and conceptual definitions of diversity in precision medicine research; (2) determine how scientific, social and technical factors influence the operationalization of diversity and implementation of inclusion in precision medicine research; and (3) engage stakeholders to create data-informed guidance that describes the strengths and weaknesses of diversity and inclusion decisions and practices in precision medicine research.

项目总结 精准医学研究面临的一个主要挑战是将历史上代表性不足的群体纳入 数量足以确保对相关风险因素的影响作出统计上有效的推断， 包括基因对疾病风险的贡献。精准医学研究人员已经认识到 迫切需要加强多样性，并采取了各种各样的办法来实现这一目标。 然而，所有这些方法都是由利益相关者对什么类型的多样性的理解决定的 物质，精准医学研究实际上在当地的后勤约束下 进行了调查，以及社区对这些办法的反应。调查这些综合体 在精准医学研究中，来自多个利益相关者的因素将是必不可少的 有效解决基因组和相关形式的精准医学中长期存在的不平等问题 研究。此应用程序寻求利用当前多样性和包容性激增的优势 研究它们的异质性、共性和对多样化参与的影响的实践 精准医学研究。我们将通过对PMR研究的深入分析来确定如何 多样性的定义等概念(例如，遗传祖先标记、自我报告的种族和 种族)影响做法，如保留、参与和返回结果。走一条生命之路 从研究关系的角度来看，我们的目标是评估实现多样性和 纳入是与其他研究目标和具体权衡的影响一起管理的 这就是结果。为了达到我们的研究目标，我们将实现以下目标：(1)确定科学和 包容性目标的社会政治理由和多样性的精确概念定义 医学研究；(2)确定科学、社会和技术因素如何影响 在精准医学研究中实现多样性的可操作性和包容性； 让利益相关者参与创建数据信息指南，描述以下各项的优势和劣势 精准医学研究中的多样性和包容性决策与实践。