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.

摘要