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 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.
In response to the continued underrepresentation of African Americans in aging research involving genetic material, this study seeks 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, participants. Through a gamified, card sort adaptation of a factorial survey design, we will examine a range of study ?attributes? and determine: how each attribute contributes to the decision to participate in research; the relative importance of each attribute; the ways in which attributes interact to create a final decision; the socially-constructed meaning of attributes (relative to social group); and how the concept of trustworthiness is expressed symbolically to impact the decision to participate. Our approach is designed to create: (1) a more accurate and actionable understanding of the challenges of genomics research engagement; and (2) an effective and simple, mobile-based methodology that can be used to test the feasibility/acceptability of research design attributes prior to recruitment for a wide range of studies.
