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 studies to address these research issues; the first study will be conducted in a controlled laboratory setting and the second in a more naturalistic, community-based setting. The objective of the first study is to compare the effectiveness of two communication strategies using NHGRI?s planned Immersive Virtual Environment Technology (IVET) laboratory. We are designing virtual ?worlds? that help participants learn genomic concepts through a series of experiential tasks. We are planning to pilot test the virtual worlds? usability and effects on learning outcomes. In the IVET lab, we will then compare the effectiveness of a series of experiential learning tasks presented in a virtual world with a didactic presentation of the same concept in increasing comprehension. The objective of the second study is to explore what individuals need to know about genomics in order to make informed decisions about risk reduction behaviors and to communicate effectively with their health care providers. We will be addressing these questions in the context of different model systems, such as families at increased risk of hereditary prostate cancer. Based on survey data, we will develop an interpersonal intervention to communicate genomic information within families. We anticipate that data collection will begin in 2006 for both studies.