Communication of Genetic and Genomic Information to Lay

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可理解和可用的方式传达信息。这种沟通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性的。个人？技能和概念知识的水平，还是他们的？遗传学知识，？也需要考虑。虽然美国成年人的遗传识字能力尚未量化，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，该研究计划的重点是制定和评估传播策略的健康传播挑战，这些策略以某种方式呈现遗传和基因组信息，以便理解和使用信息所需的技能不会超过预期目标受众的遗传素养水平。 我们目前正在进行两项主要研究，以解决这些研究问题;第一项研究将在高度受控的实验室环境中进行，第二项研究将在更自然的，以社区为基础的环境中进行。第一项研究的目的是比较两种沟通策略在NHGRI？沉浸式虚拟环境技术（IVET）实验室。我们在设计？虚拟世界帮助参与者学习基因组学概念，即基因与环境的相互作用会影响常见疾病的风险。虚拟世界使用不同的隐喻来传达这一概念。我们要对虚拟世界进行试点测试？可用性和对学习成果的影响，然后选择最好的比喻。在随后的实验阶段，我们将比较基于主动学习的虚拟世界的有效性（即，互动的，自我驱动的任务），以虚拟世界的基础上教学学习，增加理解的基因-环境相互作用的概念。我们预计，试点测试将于2006年冬季开始，研究的实验阶段将于2007年春季开始。 第二个主要研究的主要目的是检查的机制，其中一个奠定健康顾问干预影响信息寻求西班牙语的拉丁美洲人之间的家庭健康史。这项研究还将评估寻求家庭健康史信息的意图的预测因素。另一个研究目的是比较非专业健康顾问会议的参与者与那些不自愿参加的参与者，以评估这种干预策略对服务不足人群的影响。这项实验将与拉美裔健康研究所全国理事会合作进行。我们预计本研究的数据收集将于2007年春季开始。 此外，我们正在对现有数据进行分析，以研究遗传性癌症风险的信念如何影响个体？从各种来源主动和被动获取癌症信息。这项分析使用的调查数据来自美国国家癌症研究所进行的2003年健康信息全国趋势调查的5,813名讲英语的成年受访者。我们预计在2007年春季提交这篇论文发表。

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 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.