Integrating Genomic Risk Assessment for Chronic Disease Management in a Diverse Population

整合基因组风险评估以进行不同人群的慢性病管理

• 批准号: 10619261
• 负责人: JAMES J CIMINO
• 金额: $ 14.44万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-07-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10619261
• 关键词: Address; African; African American; African American population; Alabama; Asian; Attitude; Bioethics; Biomedical Research; Chronic Disease; Communication; Communities; Data; Development; Disadvantaged; Disease; Disease Management; Early Intervention; Effectiveness; Electronic Medical Records and Genomics Network; Ethnic group; European; Focus Groups; Fostering; Future; Genes; Genetic Screening; Genomic medicine; Genomics; Health; Health Sciences; Healthcare; Hispanic; Human Genome Project; Human Resources; Individual; Information Dissemination; Infrastructure; Institution; Intervention; Investigation; Journals; Medical; Methodology; Minority Groups; Movement; Native Americans; Participant; Patient Recruitments; Peer Review; Personal Genetic Information; Persons; Population; Population Heterogeneity; Privacy; Public Health; Publications; Radio; Religion and Spirituality; Research; Research Proposals; Risk Assessment; Role; Rural; Site; Societies; Source; Stigmatization; Surveys; Technology; Television; Testing; Time; Trust; Underserved Population; United States; caucasian American; contextual factors; demographics; distrust; ethical legal social implication; improved; racial disparity; recruit; response; screening; social; social media; targeted treatment; trustworthiness

ABSTRACT This bioethics focused research proposal builds upon pilot data gathered through eMERGE site-specific ELSI research. That research compared rural and urban Alabama Genomic Health Initiative (AGHI) participants from African and European ancestry on a number of issues related to obstacles and attractions to participation in genomic research. Pilot data suggested interesting and stark differences in trusted sources of information among these populations, warranting deeper investigation. In this study, we will focus our investigation more narrowly on trusted sources of information, while simultaneously expanding our recruitment to a national audience. Utilizing both qualitative focus group and quantitative survey data, we will explore key sources of medical information trusted by individuals from White and African American racial backgrounds, including the role of a variety of community leaders and spokespersons, as well as the role of word-of-mouth, venues for dissemination of information, and effective messaging platforms (e.g., religious organizations, social media, television or radio, etc.). In addition, we will identify key contextual factors most salient in establishing trust for participation in genomic screening within each population. Findings will be confirmed using a quantitative survey, which will also look for regional contexts among both White and African American participants. Finally, we will determine whether there are statistically significant differences in trusted sources of a) medical and b) genomic screening information. We will do this through a quantitative survey developed on the basis of preliminary focus group findings. The results of this study will significantly enhance future genomic research by contributing to the recruitment infrastructure necessary to fully diversify participant demographics. The data from this study will result in two deliverables. First, data will be analyzed and disseminated to the larger eMERGE consortium, as well as through publication in a peer-reviewed scientific journal. Second, the data and methodology will provide a basis for development of an R21 or R01 seeking to identify contextual factors influencing trusted sources of information among Asian, Hispanic, Native American, and other demographic groups with specific cultural norms.

抽象的 这项以生物伦理学为重点的研究提案建立在通过收集的试点数据的基础上 eMERGE 特定地点的 ELSI 研究。该研究比较了阿拉巴马州的农村和城市 基因组健康倡议 (AGHI) 参与者来自非洲和欧洲血统 与参与基因组研究的障碍和吸引力相关的问题。试点数据 表明这些人之间的可信信息来源存在有趣且明显的差异 人群，值得更深入的调查。在本研究中，我们将更加关注我们的调查 严格限制可信的信息来源，同时将我们的招聘范围扩大到 全国观众。 利用定性焦点小组和定量调查数据，我们将探索关键 白人和非裔美国人信任的医疗信息来源 背景，包括各种社区领袖和发言人的角色，以及 口碑、信息传播场所和有效信息传递的作用 平台（例如宗教组织、社交媒体、电视或广播等）。此外，我们将 确定在建立参与基因组信任方面最显着的关键背景因素 在每个人群中进行筛查。调查结果将通过定量调查得到证实，该调查 还将寻找白人和非裔美国人参与者的区域背景。最后， 我们将确定 a) 的可信来源是否存在统计上的显着差异 医学和 b) 基因组筛查信息。我们将通过定量调查来做到这一点 根据焦点小组初步调查结果制定。 这项研究的结果将通过贡献显着增强未来的基因组研究 为使参与者人口结构完全多样化所必需的招聘基础设施。数据 这项研究将产生两个可交付成果。首先，数据将被分析并分发给 更大的 eMERGE 联盟，以及通过在同行评审的科学期刊上发表。 其次，数据和方法将为 R21 或 R01 寻求的开发提供基础 确定影响亚裔、西班牙裔、 美洲原住民和其他具有特定文化规范的人口群体。