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个人既能理解又能应用的方式交流信息。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健康素养技能方面存在局限性。因此，该项目侧重于制定和测试提供遗传和基因组信息的战略的健康传播挑战，以使理解和应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条主要的研究路线来解决这些问题；第一条是在高度受控的实验室环境中进行的，第二条是在更自然的、以社区为基础的环境中进行的。我们的第一个实验室研究的目的是比较两种沟通策略在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，设计了四个基于两个不同隐喻的虚拟世界，以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。在对世界进行初步测试以选择最好的隐喻来传达概念后，我们通过实验比较了基于主动学习的虚拟世界(即互动的自我驱动任务)和基于说教学习的虚拟世界在提高对基因-环境相互作用概念的理解方面的有效性。我们招募了156名年龄在18-40岁之间、没有专业遗传学知识的健康成年人。数据收集工作于2007年10月完成，分析工作于2008年3月完成。我们有一篇正在出版的论文和两篇根据这项研究提交的额外论文。我们正在继续这一系列的实验研究，将在IVETA进行一项新的研究，旨在调查个人在收到客观风险信息后如何改变他们的疾病风险估计，以及这一过程是否受到诸如患者的算术技能、对医生的信任或他们的社会认同等因素的影响。我们计划在这项研究中招募140名年龄在25-40岁之间、自我认同为非裔美国人或黑人的参与者，他们尚未被诊断出患有癌症，并预计数据收集将于2008年12月开始。 我们主要以社区为基础的研究的主要研究目标是：调查通过两个城市的社区诊所招募的讲西班牙语的拉丁裔人中与三种常见疾病(即癌症、糖尿病和心脏病)遗传风险相关的基线态度、信念和意图；并检查关于基因和家族史的教育项目如何影响认知结果。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。我们招募了474名年龄至少18岁的讲西班牙语的成年人参与这项研究。参与者要么完成同伴教育课程，要么完成仅有小册子的比较条件。我们于2007年11月完成了招聘工作，并于2008年4月完成了数据分析，目前正在根据这些调查结果编写两篇论文。我们正在与纽约州立大学斯坦布鲁克分校的研究人员合作进行一项新的研究，以扩大这一研究范围。我们将在纽约社区卫生中心调查500名讲英语和西班牙语的患者的健康素养、知识、态度、信念和与基因和家族史相关的行为。我们预计数据收集工作将于2009年6月完成，分析工作将于2009年9月完成。我们还开始设计一项新的研究，与约翰·霍普金斯大学的研究人员合作，对60名健康素养水平不同的成年人进行抽样调查，以检查他们对基于网络的遗传信息陈述的理解。我们预计数据收集工作将于2009年2月开始。

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 ways that individuals can both understand and apply. 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 health literacy skills. This project therefore focuses on the health communication challenge of developing and testing strategies that present genetic and genomic information so that the skills required to understand and apply the information do not surpass the genetic literacy levels of the intended target audience. We are currently conducting two major lines of research to address these issues; the first is being conducted in a highly controlled laboratory setting and the second in more naturalistic, community-based settings. The objective of our first laboratory study was to compare the effectiveness of two communication strategies in NHGRIs Immersive Virtual Environment Testing Area (IVETA). We designed four virtual worlds based on two different metaphors 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. After pilot testing the worlds to select the best metaphor with which to convey the concept, we experimentally compared 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 recruited 156 healthy adults ages 18-40 without specialized genetics knowledge. Data collection was completed in October 2007 and analysis in March 2008. We have one paper in press and two additional papers submitted based on this study. We are continuing this line of experimental research with a new study to be conducted in the IVETA, which is designed to investigate how individuals change their disease risk estimates after receiving objective risk information and whether this process is affected by factors such as patients numeracy skills, trust in physicians, or their social identity. We plan to recruit 140 participants who self identify as African American or Black between ages 25-40 who have not been diagnosed with cancer for this study, and anticipate that data collection will begin in December 2008. The primary research objectives of our main community-based study were: to investigate baseline attitudes, beliefs and intentions related to inherited risk of three 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. This study is a collaboration with the National Council of La Raza Institute for Hispanic Health and California State University at Long Beach. We recruited 474 Spanish-speaking adults at least 18 years of age to participate in the study. Participants completed either a peer education session or a brochure-only comparison condition. We completed recruitment in November 2007 and data analysis in April 2008, and currently have two papers in preparation based upon these findings. We are expanding this line of research with a new study in collaboration with researchers at SUNY-Stonybrook. We will be investigating health literacy, knowledge, attitudes, beliefs, and behaviors related to genes and family history among 500 English- and Spanish-speaking patients at community health centers in New York. We anticipate that data collection will be completed in June 2009, and analysis in September 2009. We have also begun designing a new study to examine understanding of web-based presentations of genetic information among a sample of 60 adults with a range of health literacy levels in collaboration with researchers at Johns Hopkins. We anticipate that data collection will begin in February 2009.