Feasibility of an Innovative Method to Understand the Dynamics of Choice and Create Diversity in Genomics Research among Older African Americans

摘要 基因研究对健康大有可为，包括拓宽我们对衰老的理解 过程和疾病，但研究样本缺乏多样性，有可能使那些遭受最严重 医学上的进步。老年非裔美国人(AA)背负着不成比例的慢性病和残疾负担 从包括糖尿病、阿尔茨海默病、心血管疾病、抑郁症在内的一系列疾病中 以及呼吸系统疾病和经历由于中青年时期的逆境而加速衰老。然而，他们 也不太可能参与研究，特别是涉及生物制品和基因工程的研究。 材料。以前的研究已经确定了研究参与的障碍和促进者，但并不有效 解决方案，因为缺乏注意这些研究属性在 决策过程。 以前期研究的成功和威斯康星大学调查的资源为基础 中心(UWSC)、卫生公平协作中心(CCHE)和社区参与和 健康伙伴关系(CCE)，我们建议测试一种创新方法的可行性，以探索相互作用 可应用于代表性研究的影响参与研究决策的多个因素 通常代表性不足的人口样本。通过混合方法(认知访谈 和卡片分类改编的析因调查设计)，我们将考察一系列研究的“属性”。(范围 所需的同意、研究团队的多样性、研究目标和机构从属关系)以确定：(1)如何 每个属性对参与研究的决策有贡献：(2)每个属性的相对重要性； (3)属性相互作用产生最终决定的方式；以及(4)属性的社会建构意义 属性。项目目标是确定：(1)与基因组学研究相关的决策模式 非裔美国人(n=140-160)的属性，通过基于平板电脑的“游戏化”调查和应用程序 一般线性模型和现代分类回归树(CART)方法；以及(2) 决定参与基因组学研究的因素的相对重要性、解释和意义 通过对目标1中的1/4的样本参与者进行“大声思考”的认知访谈。 创建：(1)对基因组研究参与的挑战有准确和可操作的理解；以及 (2)适用于测试研究的可行性/可接受性的有效、简单、基于移动的方法 在招聘前对设计属性进行广泛的研究。研究结果将直接传播到 华盛顿大学临床和翻译研究所(NIH/NCATS：UL1TR002373)的研究人员和 华盛顿大学阿尔茨海默病研究中心(NIH/NIA：2P50AG033514-06)。研究的后续用途和影响 调查结果将通过现有的评估程序进行跟踪。

ABSTRACT Genetic research holds great promise for health including the broadening of our understanding of aging processes and disease but a lack of diversity in study samples threatens to leave those who suffer most out of medical advances. Older African Americans (AA) bear a disproportionate burden of chronic disease and disability from a wide range of conditions including diabetes, Alzheimer’s Disease, cardiovascular disease, depression and respiratory disease and experience accelerated aging as a result of adversity in mid and early life. Yet, they are also are less likely to participate in research, especially in projects involving biospecimens and genetic material. Previous studies have determined barriers and facilitators for research engagement but not effective solutions due to a lack of attention to how these study attributes are weighed relative to one another in the decision making process. Building upon the success of preliminary research and the resources of the University of Wisconsin’s Survey Center (UWSC), Collaborative Center for Health Equity (CCHE), and Center for Community Engagement and Health Partnerships (CCE), we propose to test the feasibility of an innovative method to explore the interaction of multiple factors that influence the decision to participate in research that can be applied to representative samples of, typically underrepresented, populations. Through a mixed method approach (cognitive interviews and card sort adaptation of a factorial survey design), we will examine a range of study “attributes.” (scope of consent required, diversity of the research team, research goal, and institutional affiliation) to determine: (1) how each attribute contributes to the decision to participate in research; (2) the relative importance of each attribute; (3) the ways in which attributes interact to create a final decision; and (4) the socially constructed meaning of attributes. Project aims are to determine: (1) patterns of decision making relative to genomics research study attributes among African Americans (n=140-160) through a tablet-based “gamified” survey and the application of both general linear models and modern classification and regression tree (CART) methodology; and (2) the relative importance, interpretation and meaning of factors in the decision to participate in genomics research through “think aloud” cognitive interviews with ¼ of the participants of the sample in aim 1. The propose will create: (1) an accurate and actionable understanding of the challenges of genomics research engagement; and (2) an effective and simple, mobile-based methodology applicable to test the feasibility/acceptability of research design attributes prior to recruitment for a wide range of studies. Study findings will be directly disseminated to researchers of the UW Institute for Clinical and Translational Research (NIH/NCATS: UL1TR002373) and the UW Alzheimer’s Disease Research Center (NIH/NIA: 2P50AG033514-06). Subsequent use and impact of study findings will be tracked through existing evaluation procedures.