Communication of Genetic and Genomic Information to Lay

遗传和基因组信息的交流

• 批准号: 7316059
• 负责人: KIMBERLY A KAPHINGST
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/7316059
• 关键词: Communication; Genetic; Genomic; Information; Lay

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.

人类基因组计划的一项重要的可能好处是基于遗传风险的个体化预防医学。然而，为了使个人从有关其遗传易感性的信息中受益，医疗和公共卫生专业人员需要能够以易于理解和可用的方式传达信息。这种沟通所面临的挑战是巨大的；必须传达复杂的概念，并且信息通常是概率性的。个人？技能和概念知识的水平，或者他们的“遗传素养”，也需要考虑。尽管美国成年人的基因素养尚未量化，但现有研究表明，近一半的人口在一般素养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来解决这些研究问题；第一项研究将在高度控制的实验室环境中进行，第二项研究将在更加自然、以社区为基础的环境中进行。第一项研究的目的是比较 NHGRI 计划的沉浸式虚拟环境技术 (IVET) 实验室中两种通信策略的有效性。我们正在设计“虚拟世界”？帮助参与者了解基因组概念，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个概念。我们将试点测试虚拟世界？可用性和对学习成果的影响，然后将选择最好的隐喻。在随后的实验阶段，我们将比较基于主动学习（即交互式、自我驱动任务）的虚拟世界与基于教学学习的虚拟世界在增强对基因-环境相互作用概念的理解方面的有效性。我们预计试点测试将于 2006 年冬季开始，研究实验阶段将于 2007 年春季开始。 第二项主要研究的主要目标是研究非专业健康顾问干预影响西班牙语拉丁裔家庭健康史信息搜索的机制。该研究还将评估寻求家庭健康史信息意图的预测因素。另一个研究目标是将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进行比较，以评估这种干预策略覆盖服务不足人群的潜力。该实验将与拉拉扎西班牙裔健康研究所国家委员会合作进行。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人？从各种来源主动和被动获取癌症信息。该分析使用了国家癌症研究所开展的 2003 年健康信息国家趋势调查中 5,813 名讲英语的成年受访者的调查数据。我们预计于 2007 年春季提交这篇论文以供发表。