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 这项以生物伦理为重点的研究提案建立在收集的试点数据的基础上 出现特定地点的ELSI研究。这项研究比较了阿拉巴马州的农村和城市 来自非洲和欧洲血统的基因组健康计划（AGHI）参与者 与参与基因组研究的障碍和吸引力有关的问题。试点数据 建议在这些信息来源中提出有趣而明显的差异 人口，需要更深入的调查。在这项研究中，我们将更多地关注调查 狭义地依靠可信赖的信息来源，同时将我们的招聘扩展到 国家观众。 利用定性焦点小组和定量调查数据，我们将探索关键 来自白人和非裔美国人种族的个人信任的医疗信息来源 背景，包括各种社区领导人和发言人的角色，以及 口碑的作用，信息传播的场所和有效的消息传递 平台（例如宗教组织，社交媒体，电视或广播等）。此外，我们将 确定建立参与基因组的信任最突出的关键上下文因素 在每个人群中进行筛查。调查将使用定量调查确认，该调查将 还将在白人和非裔美国人参与者中寻找区域背景。最后， 我们将确定在可信赖的来源上是否存在统计学上的显着差异） 医学和b）基因组筛选信息。我们将通过定量调查来做到这一点 根据初步焦点小组的发现开发。 这项研究的结果将通过贡献来显着增强未来的基因组研究 为了使参与者的人口统计数据充分多元化所必需的招聘基础设施。数据 从这项研究中将导致两个可交付成果。首先，将分析数据并传播到 较大的出现财团以及通过同行评审的科学杂志中的出版物。 其次，数据和方法将为R21或R01寻求开发提供基础 确定影响亚洲，西班牙裔美国人信息来源的上下文因素， 美洲原住民和其他具有特定文化规范的人口群体。