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 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. Our current laboratory study is being conducted in the NIH Immersive Virtual Environment Testing Area (IVETA). This study 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 patient numeracy skills, trust in physicians, or their social identity. We plan to recruit 140 participants who self identify as African American or Black between the ages of 25-40 who have not been diagnosed with cancer for this study. We have recruited about 50 participants to date, and anticipate that data collection will continue through December 2009. The primary research objective of our main community-based study is to investigate health literacy, knowledge, attitudes, beliefs, and behaviors related to genes and family history among 800 English- and Spanish-speaking patients at community health centers in New York. We completed the first phase of data collection in December 2008 and are currently analyzing these data. We have a second phase of data collection underway, with an anticipated completion date of October 2009. We are also conducting a 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. Data collection is currently underway on this study.