Communication of Genetic and Genomic Information to Lay

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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 research program 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 will be 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 NHGRI?s planned Immersive Virtual Environment Technology (IVET) laboratory. We are designing ?virtual worlds? that help participants learn the genomic concept that gene-environment interactions affect the risk of common disease. The virtual worlds use different metaphors to convey this concept. We will pilot test the virtual worlds? usability and effects on learning outcomes and will then select the best metaphor. In the subsequent experimental phase, we will then compare 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 anticipate that pilot testing will begin in the winter of 2006 and that the experimental phase of the study will begin in the spring of 2007. The primary objective of the second main study is to examine the mechanisms by which a lay health advisor intervention affects information seeking about family health history among Spanish-speaking Latinos. The study will also assess predictors of intentions to seek information about family health history. An additional study objective is to compare participants in lay health advisor sessions with those who do not volunteer to participate, in order to assess the potential of this intervention strategy to reach underserved populations. This experiment will be conducted in collaboration with the National Council of La Raza Institute for Hispanic Health. We anticipate that data collection will begin in spring 2007 for this study. In addition, we are conducting an analysis of existing data to examine how beliefs about inherited cancer risk might affect individuals? active and passive acquisition of cancer information from various sources. This analysis is using survey data from 5,813 English-speaking adult respondents to the 2003 Health Information National Trends Survey conducted by the National Cancer Institute. We anticipate submitting this paper for publication in spring of 2007.