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

摘要 这一以生物伦理学为重点的研究建议建立在通过以下途径收集的试点数据基础上： eMERGE研究中心特定ELSI研究。这项研究比较了亚拉巴马的农村和城市 来自非洲和欧洲血统的基因组健康倡议（AGHI）参与者参加了一些 参与基因组研究的障碍和吸引力问题。导频数据 提出了有趣的和明显的差异，在这些可信的信息来源， #21453;，进行更深入的调查。在本研究中，我们将更加关注我们的调查 狭隘地依赖可靠的信息来源，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，我们将探讨关键 来自白色和非洲裔美国人种族的个人信任的医疗信息来源 背景，包括各种社区领袖和发言人的作用，以及 口碑的作用、传播信息的渠道和有效的信息传递 平台（例如，宗教组织、社交媒体、电视或广播等）。此外，我们将 确定在建立参与基因组研究的信任方面最突出的关键背景因素 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， 还将在白色和非洲裔美国人参与者中寻找区域背景。最后， 我们将确定a）的可信来源是否存在统计上的显著差异 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 根据焦点小组的初步调查结果制定。 这项研究的结果将大大加强未来的基因组研究， 征聘基础设施，使参与者人口充分多样化。数据 本研究将产生两个可交付成果。首先，数据将被分析并传播到 通过更大的eMERGE联合会，以及通过在同行评审的科学期刊上发表文章。 其次，数据和方法将为R21或R 01寻求的发展提供基础 确定影响亚洲人，西班牙人， 美国原住民和其他具有特定文化规范的人口群体。

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.