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 ways that individuals can both understand and apply. 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 health literacy skills. This project therefore focuses on the health communication challenge of developing and testing strategies that present genetic and genomic information so that the skills required to understand and apply the information do not surpass the genetic literacy levels of the intended target audience. ? ? We are currently conducting two major lines of research to address these issues; the first is being conducted in a highly controlled laboratory setting and the second in more naturalistic, community-based settings. The objective of our first laboratory study was to compare the effectiveness of two communication strategies in NHGRIs Immersive Virtual Environment Testing Area (IVETA). We designed four virtual worlds based on two different metaphors 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. After pilot testing the worlds to select the best metaphor with which to convey the concept, we experimentally compared 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 recruited 156 healthy adults ages 18-40 without specialized genetics knowledge. Data collection was completed in October 2007 and analysis in March 2008. We have one paper in press and two additional papers submitted based on this study. We are continuing this line of experimental research with a new study to be conducted in the IVETA, which is designed to investigate how individuals change their disease risk estimates after receiving objective risk information and whether this process is affected by factors such as patients numeracy skills, trust in physicians, or their social identity. We plan to recruit 140 participants who self identify as African American or Black between ages 25-40 who have not been diagnosed with cancer for this study, and anticipate that data collection will begin in December 2008. ? ? The primary research objectives of our main community-based study were: to investigate baseline attitudes, beliefs and intentions related to inherited risk of three 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. This study is a collaboration with the National Council of La Raza Institute for Hispanic Health and California State University at Long Beach. We recruited 474 Spanish-speaking adults at least 18 years of age to participate in the study. Participants completed either a peer education session or a brochure-only comparison condition. We completed recruitment in November 2007 and data analysis in April 2008, and currently have two papers in preparation based upon these findings. We are expanding this line of research with a new study in collaboration with researchers at SUNY-Stonybrook. We will be investigating health literacy, knowledge, attitudes, beliefs, and behaviors related to genes and family history among 500 English- and Spanish-speaking patients at community health centers in New York. We anticipate that data collection will be completed in June 2009, and analysis in September 2009. We have also begun designing a new study to examine understanding of web-based presentations of genetic information among a sample of 60 adults with a range of health literacy levels in collaboration with researchers at Johns Hopkins. We anticipate that data collection will begin in February 2009.
