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研究，以解决这些研究问题；第一项研究将在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利用S计划的沉浸式虚拟环境技术(IVET)实验室，比较两种沟通策略的有效性。我们正在设计虚拟世界？帮助参与者通过一系列体验性任务学习基因组概念。我们计划对虚拟世界进行试点测试吗？可用性和对学习结果的影响。在IVET实验室中，我们将比较在虚拟世界中呈现的一系列体验式学习任务的有效性，以及在提高理解力方面对相同概念的说教呈现的有效性。第二项研究的目的是探索个人需要了解哪些基因组学知识，以便做出关于降低风险行为的明智决定，并与他们的医疗保健提供者进行有效的沟通。我们将在不同的模型系统的背景下解决这些问题，例如遗传性前列腺癌风险增加的家庭。基于调查数据，我们将开发一种人际干预，以在家庭内交流基因组信息。我们预计这两项研究的数据收集工作将于2006年开始。

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 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 studies to address these research issues; the first study will be conducted in a controlled laboratory setting and the second in a more naturalistic, community-based setting. The objective of the first study is to compare the effectiveness of two communication strategies using NHGRI?s planned Immersive Virtual Environment Technology (IVET) laboratory. We are designing virtual ?worlds? that help participants learn genomic concepts through a series of experiential tasks. We are planning to pilot test the virtual worlds? usability and effects on learning outcomes. In the IVET lab, we will then compare the effectiveness of a series of experiential learning tasks presented in a virtual world with a didactic presentation of the same concept in increasing comprehension. The objective of the second study is to explore what individuals need to know about genomics in order to make informed decisions about risk reduction behaviors and to communicate effectively with their health care providers. We will be addressing these questions in the context of different model systems, such as families at increased risk of hereditary prostate cancer. Based on survey data, we will develop an interpersonal intervention to communicate genomic information within families. We anticipate that data collection will begin in 2006 for both studies.