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.

项目摘要 精确医学研究的一个主要挑战包括历史上代表性不足的群体 足以确保相关风险因素影响的统计有效推断， 包括对疾病风险的遗传贡献。精密医学研究人员已经认识到 提高多样性并采取了多种方法来实现这一目标的批判性需求。 但是，所有这些方法都由利益相关者对哪种多样性的理解所塑造 物质，精确医学研究实际上是当地的后勤约束 进行了，以及社区对这些方法的反应。研究这些复合物 从多个利益相关者的精确医学研究的角度来看，因素对于 有效地解决了基因组和相关形式的长期不平等现象 研究。该应用程序旨在利用当前的多样性和包容性扩散 研究其异质性，共同点以及对参与多样化的影响的实践 精密医学研究。我们将通过对PMR研究的深入分析来确定 诸如多样性定义之类的概念（例如遗传血统标记，自我报告的种族和 种族）影响诸如保留，参与和结果返回之类的实践。进行生命 研究关系的观点，我们旨在评估如何采取多样性和 包容与其他研究目标及其特定权衡的含义协同管理 结果。为了实现我们的研究目标，我们将实现以下目的：（1）确定科学和 精确的社会政治依据 医学研究； （2）确定科学，社会和技术因素如何影响 多样性的运作和精确医学研究中包容的实施； （3） 吸引利益相关者创建数据信息的指导，描述 精确医学研究中的多样性和包容性决策和实践。