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。个人？技能和概念知识的水平，或他们的遗传素养，？也需要考虑。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，该研究计划侧重于健康传播的挑战，即制定和评估传播策略，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；第一项研究将在高度受控的实验室环境中进行，第二项研究将在更具自然主义色彩的社区环境中进行。第一项研究的目的是比较两种沟通策略在S计划的沉浸式虚拟环境技术(IVET)实验室中的有效性。我们在设计？虚拟世界？这有助于参与者了解基因-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。我们将对虚拟世界进行试点测试？可用性和对学习结果的影响，然后会选择最好的隐喻。在随后的实验阶段，我们将比较基于主动学习的虚拟世界(即互动的自我驱动任务)和基于传授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。我们预计试行测试将于2006年冬季开始，该研究的实验阶段将于2007年春季开始。 第二项主要研究的主要目标是检查非专业健康顾问干预影响说西班牙语的拉丁裔寻求有关家庭健康史的信息的机制。这项研究还将评估寻求有关家庭健康史信息的意图的预测因素。另一项研究目标是将参加非专业健康顾问会议的人与那些不自愿参加的人进行比较，以评估这一干预战略对服务不足人群的潜在影响。这项实验将与拉拉扎拉美裔健康研究所全国委员会合作进行。我们预计这项研究的数据收集工作将于2007年春季开始。 此外，我们正在对现有数据进行分析，以检查关于遗传癌症风险的信念可能会如何影响个人？主动和被动地从各种来源获取癌症信息。这项分析使用了5813名说英语的成年受访者的调查数据，这些受访者参加了国家癌症研究所进行的2003年健康信息全国趋势调查。我们预计将于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.