Diversity in Practice: the Quest for Inclusion in Precision Medicine

实践多样性：追求精准医疗的包容性

• 批准号: 10579099
• 负责人: Sandra Soo-Jin Lee
• 金额: $ 4.99万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-01-01 至 2025-12-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10579099
• 关键词: Applications Grants; Attitude; Basic Science; Behavioral; Bioethics; Biomedical Research; Biotechnology; Books; Categories; Clinical; Clinical Data; Collection; Communities; Conceptions; Consent; Data; Data Collection; Data Set; Dimensions; Disease; Electronic Health Record; Empirical Research; Ensure; Ethics; Ethnic Origin; Ethnography; European ancestry; Focus Groups; Funding; Future; General Population; Genetic; Genetic Research; Genetic Variation; Genome; Genomic medicine; Genomics; Goals; Grant; Health; Health Policy; Healthcare Systems; Human; Human Genetics; Individual; Institution; Institutionalization; Interview; Knowledge; Length; Manuscripts; Measures; Mediation; Medical; Methods; Minority Groups; Nationalities; Outcome; Participant; Patient Preferences; Patients; Policy Maker; Policy Research; Population; Population Heterogeneity; Principal Investigator; Production; Qualitative Research; Race; Research; Research Personnel; Sampling; Science; Scientific Inquiry; Series; Shapes; Site; Societies; Technology; Time; Translating; Translations; Underrepresented Minority; Underrepresented Populations; United States National Institutes of Health; Variant; Work; clinical practice; diversity and inclusion; ethnic diversity; ethnic minority population; expectation; experience; genomic data; health inequalities; insight; interest; member; population health; precision medicine; preference; racial diversity; racial minority population; recruit; social; social culture; social implication; sociologist; sociology/anthropology; stakeholder perspectives

PROJECT SUMMARY/ABSTRACT Broad recognition of a diversity gap in genomic datasets has fueled calls for targeted recruitment and retention of individuals from populations that have historically not participated in biomedical research. Yet, definitions of what constitutes diversity, according to whom, and how best to implement goals of inclusion remain elusive. Precision medicine research (PMR) is a significant and consequential sphere of scientific inquiry where questions about the meanings and effects of diversity are being worked out in practice and increasingly institutionalized. Approaches to increasing diversity and inclusion of racial and ethnic minority populations in precision medicine research are heterogeneous, but little is known about their impact. To fill this gap, we have embarked on three studies that empirically examine different stakeholder perspectives and experiences with PMR and its varied approaches to enhancing diversity and inclusion of underrepresented populations as research participants. This project will synthesize data and findings from across these studies, to develop what will be the first book-length analysis of diversity in practice in PMR, and its consequences for meaningful inclusion. The specific aim of this grant application is to complete a book manuscript that will examine the ethical and social dimensions of concepts of diversity and inclusion, how they are put into practice by stakeholders in precision medicine research, and their impacts for our understandings of health and human variation. The data to be included in this book come from three NIH-funded studies led by the co-authors that include focus groups with racially and ethnically diverse patients to assess their attitudes towards the use and governance of clinical data and samples; a review of documents related to three NIH-funded PMR consortia and 5 PMR research sites; observations of PMR consortia and site activities; and in-depth interviews with PMR funders, researchers, participants, and individuals from diverse populations being recruited for PMR. Such a book will offer an empirically informed, ethnographically rich analysis and reflection on how PMR diversity practices are unfolding, and with what consequences for the populations it seeks to serve and for the larger society in which it is embedded and helps to shape. The target audiences for this book include: researchers who conduct genomics and precision medicine research, policymakers and research funders, research institutions and research staff, commercial entities involved in biomedical research, scholars in bioethics, sociology and anthropology, science and technology studies, and health policy, and members of the general public with interests in health, genetics, and biomedical research.

项目摘要/摘要 基因组数据集中多样性差距的广泛认识促使呼吁有针对性的招聘和保留率 从历史上没有参加生物医学研究的人群中。但是，定义 构成多样性的原因，以及如何最好地实施包容性目标仍然难以捉摸。 精密医学研究（PMR）是科学探究的重要领域 关于多样性的含义和影响的问题正在实践中解决，并且越来越多 制度化。增加种族和少数民族人口的多样性和包含在内的方法 精密医学研究是异质的，但对它们的影响知之甚少。为了填补这个空白，我们有 进行了三项研究，从经验上研究了不同的利益相关者的观点和经验 PMR及其在增强多样性和包含不足人群的各种方法中 研究参与者。该项目将在这些研究中综合数据和发现，以开发什么 将是PMR实践中多样性的第一本书长度分析，其对有意义的后果 包容。本赠款申请的具体目的是完成一本书手稿，该手稿将检查 多样性和包容概念的道德和社会层面，如何付诸实践 精确医学研究的利益相关者及其对我们对健康和人类的理解的影响 变化。本书中包含的数据来自由合着者领导的三项NIH资助的研究 包括具有种族和种族多样性患者的焦点小组，以评估他们对使用的态度 临床数据和样本的治理；审查与三个NIH资助的PMR财团有关的文件 和5 pmr研究地点；观察PMR财团和现场活动；和PMR的深入访谈 来自PMR招募的来自不同人群的资助者，研究人员，参与者和个人。这样的 书将提供经验知情的人种志上丰富的分析和对PMR多样性的反思 实践正在发展，以及对其寻求服务的人群的影响以及对更大的人的影响 它嵌入并有助于塑造的社会。本书的目标受众包括：研究人员 谁进行基因组学和精密医学研究，决策者和研究资助者，研究 机构和研究人员，参与生物医学研究的商业实体，生物伦理学学者， 社会学和人类学，科学技术研究以及健康政策，以及一般成员 公众对健康，遗传学和生物医学研究感兴趣。