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。我们目前的实验室研究是在NIH沉浸式虚拟环境测试区(IVETA)进行的。这项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，以及这个过程是否受到患者算术技能、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，他们尚未被诊断为癌症。到目前为止，我们已经招募了大约50名参与者，预计数据收集将持续到2009年12月。 我们主要的社区研究的主要研究目标是调查纽约社区卫生中心800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。我们于2008年12月完成了第一阶段的数据收集，目前正在分析这些数据。我们正在进行第二阶段的数据收集，预计将于2009年10月完成。我们还在进行一项研究，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。目前正在收集这项研究的数据。

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. Our current laboratory study is being conducted in the NIH Immersive Virtual Environment Testing Area (IVETA). This study 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 patient numeracy skills, trust in physicians, or their social identity. We plan to recruit 140 participants who self identify as African American or Black between the ages of 25-40 who have not been diagnosed with cancer for this study. We have recruited about 50 participants to date, and anticipate that data collection will continue through December 2009. The primary research objective of our main community-based study is to investigate health literacy, knowledge, attitudes, beliefs, and behaviors related to genes and family history among 800 English- and Spanish-speaking patients at community health centers in New York. We completed the first phase of data collection in December 2008 and are currently analyzing these data. We have a second phase of data collection underway, with an anticipated completion date of October 2009. We are also conducting a 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. Data collection is currently underway on this study.