Perceptions of genetic research in three rural Appalachian Ohio communities

Abstract

Appalachian Americans are an underserved population with increased risk for diseases having strong genetic and environmental precursors. The purpose of this study is to understand the thoughts and perceptions of genetic research of Appalachian Americans residing in eastern Ohio prior to conducting a genetic research study with this population. A genetic survey was developed and completed by 180 participants from Marietta, Cambridge and East Liverpool, Ohio. The majority of respondents were Caucasian women with a median age of 37.5years. We found that participants had a high interest in participating in 80%, allowing their children to participate in 78%, and learning more about genetic research studies (90%); moreover, they thought that genetic research studies are useful to society (93%). When asked what information would be useful when deciding to participate in a genetic research study, the following were most important: how environmental pollutants affect their genes and their child's genes (84%), types of biological specimens needed for genetic research studies (75%) and who will have access to their samples (75%). Of the 20% who responded that they were "unsure" about participating in a genetic research study, the leading reason was "I don't have enough information about genetic research to make a decision" (56%). We also asked respondents to choose their preferred method for receiving genetic information, and the principal response was to read a brochure (40%). Findings from this study will improve community education materials and dissemination methods that are tailored for underserved populations engaged in genetic research.