Communication of Genetic and Genomic Information to Lay Audiences

人类基因组计划可能带来的一个重要好处是基于遗传风险的个体化预防医学。然而，为了使个人受益于有关其遗传易感性的信息，医疗和公共卫生专业人员需要能够以一种可理解和可用的方式交流信息。这种交流所涉及的挑战是巨大的；必须传达复杂的概念，而且信息往往是概率的。还需要考虑个人的技能和概念知识水平，或他们的遗传素养。尽管美国成年人的遗传素养还没有被量化，但现有的研究表明，近一半的人口在一般识字技能方面存在局限性。因此，该项目侧重于健康传播方面的挑战，即制定和评估传播战略，以一种方式呈现遗传和基因组信息，使理解和使用信息所需的技能不超过预期目标受众的遗传识字水平。 我们目前正在进行两项主要研究，以解决这些研究问题；第一项研究是在高度受控的实验室环境中进行的，第二项研究是在更具自然主义色彩的社区环境中进行的。第一项研究的目的是比较两种通信策略在NHGRI沉浸式虚拟环境测试区(IVETA)中的有效性。我们与加州大学圣巴巴拉分校的研究人员合作，设计了四个虚拟世界，帮助参与者学习基因-环境相互作用影响常见疾病风险的基因组概念。虚拟世界使用不同的隐喻来传达这一概念。2007年1月，我们对42名本科生进行了虚拟世界对学习结果影响的初步测试，提出了中介变量，并根据初步研究结果，选择了一个最佳隐喻。我们现在正在进行这项研究的主要实验阶段。我们正在比较基于主动学习的虚拟世界(即，交互的、自我驱动的任务)和基于说教学习的虚拟世界在增加对基因-环境相互作用概念的理解方面的有效性。我们计划招募150名健康的成年人，年龄在18-40岁之间，没有专门的遗传学知识。到目前为止，我们已经招募了135名参与者参与这项研究。我们预计数据收集工作将于2007年10月完成，数据分析工作将于2007年12月完成。 第二个主要项目的主要研究目标是：在通过两个城市的社区诊所招募的讲西班牙语的拉丁裔中，调查常见疾病(即癌症、糖尿病、心脏病)的基线概念模型；并研究关于基因和家族史的教育项目如何影响认知结果，以及这些影响如何与基线模型相关。这项研究是与拉拉扎拉美裔健康研究所全国委员会和位于长滩的加州州立大学合作进行的。我们正在招募300人来完成一个教育项目，150人来完成一个仅限宣传册的条件。所有参与者都是18岁以上讲西班牙语的成年人。我们目前招募了255名参与者参与这项研究。我们计划在2007年11月完成招聘，并在2008年1月完成数据分析。 此外，我们还完成了对癌症遗传性信念与个人主动和被动获取癌症信息以及他们的健康行为之间的相关性分析。这项分析使用了5813名说英语的成年受访者的调查数据，这些受访者参加了由国家癌症研究所进行的2003年健康信息全国趋势调查。我们已经提交了这篇论文以供发表。

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.