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

摘要 基因研究为健康带来了巨大的希望，包括扩大我们对衰老的理解。 过程和疾病，但缺乏多样性的研究样本有可能离开那些谁遭受最多的疾病， 医学进步老年非裔美国人（AA）承担着不成比例的慢性疾病和残疾负担 包括糖尿病、老年痴呆症、心血管疾病、抑郁症 和呼吸系统疾病，并在中期和早期生活中因逆境而加速衰老。但他们 他们也不太可能参与研究，特别是涉及生物标本和遗传学的项目。 材料以前的研究已经确定了研究参与的障碍和促进因素，但效果不佳 由于缺乏对这些研究属性在 决策过程。 基于初步研究的成功和威斯康星州大学调查的资源 中心（UWSC），健康公平合作中心（CCHE）和社区参与中心， 健康合作伙伴关系（CCE），我们建议测试一种创新方法来探索互动的可行性 影响参与研究的决定的多种因素，可以应用于代表性的 典型的代表性不足的人口样本。通过混合方法（认知访谈 和卡排序适应析因调查设计），我们将检查一系列的研究“属性”。（范围） 同意要求，研究团队的多样性，研究目标和机构附属机构），以确定：（1）如何 每个属性对参与研究的决定的贡献;（2）每个属性的相对重要性; (3)属性相互作用以产生最终决定的方式;（4）社会建构的意义 美德.先知-愿项目目标是确定：（1）与基因组学研究相关的决策模式 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和回归树（CART）方法;（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 通过与目标1中样本的1/4参与者进行的“大声思考”认知访谈。该提案将 创建：（1）对基因组学研究参与的挑战的准确和可操作的理解; (2)一个有效和简单的，基于移动的方法，适用于测试研究的可行性/可接受性 在为广泛的研究招募之前设计属性。研究结果将直接分发给 华盛顿大学临床和转化研究所（NIH/NCATS：UL 1 TR 002373）的研究人员和 UW阿尔茨海默病研究中心（NIH/NIA：2 P50 AG 033514 -06）。研究的后续使用和影响 将通过现有的评价程序跟踪调查结果。

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.