Communication of Genetic and Genomic Information to Lay Audiences

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One important possible benefit of the Human Genome Project is individualized preventive medicine based on genetic risk. In order for individuals to benefit from information about their genetic susceptibility, however, medical and public health professionals need to be able to communicate the information in an understandable and usable way. The challenges involved in such communication are substantial; complex concepts must be conveyed and the information is often probabilistic. Individuals levels of skills and conceptual knowledge, or their genetic literacy, also need to be considered. Although the genetic literacy of U.S. adults has not been quantified, existing research has demonstrated that nearly one-half of the population has limitations in their general literacy skills. This project therefore focuses on the health communication challenge of developing and evaluating communication strategies that present genetic and genomic information in a way so that the skills required to understand and use the information do not surpass the genetic literacy levels of the intended target audience. We are currently working on two main studies to address these research issues; the first study is being conducted in a highly controlled laboratory setting and the second in more naturalistic, community-based settings. The objective of the first study is to compare the effectiveness of two communication strategies in NHGRIs Immersive Virtual Environment Testing Area (IVETA). We have designed four virtual worlds to help participants learn the genomic concept that gene-environment interactions affect the risk of common disease, in collaboration with investigators at the University of California-Santa Barbara. The virtual worlds use different metaphors to convey this concept. In January 2007, we pilot tested the virtual worlds effects on learning outcomes and proposed mediating variables with 42 undergraduate students and, based on the pilot findings, selected one metaphor as the best. We are now conducting the main experimental phase of the study. We are comparing the effectiveness of a virtual world based on active learning (i.e., interactive, self-driven tasks) to a virtual world based on didactic learning in increasing comprehension of the gene-environment interaction concept. We are planning to recruit 150 healthy adults ages 18-40 without specialized genetics knowledge. To date, we have enrolled 135 participants in the study. We anticipate that data collection will be complete in October 2007 and data analysis will be complete in December 2007. The primary research objectives for the second main project are: to investigate baseline conceptual models of common diseases (i.e., cancer, diabetes, heart disease) among Spanish-speaking Latinos recruited through community-based clinics in two cities; and to examine how an education program about genes and family history affects cognitive outcomes, and how these effects are related to baseline models. This study is a collaboration with the National Council of La Raza Institute for Hispanic Health and California State University at Long Beach. We are recruiting 300 individuals to complete an educational program and 150 individuals to complete a brochure-only condition. All participants are Spanish-speaking adults at least 18 years of age. We have currently enrolled 255 participants in the study. We plan to finish recruitment in November 2007 and data analysis in January 2008. In addition, we have completed an analysis of the correlations between beliefs about the heritability of cancer and individuals active and passive acquisition of cancer information, as well as their health behaviors. This analysis used survey data from 5,813 English-speaking adult respondents to the 2003 Health Information National Trends Survey conducted by the National Cancer Institute. We have submitted this paper for publication.