Communication of genomic information in clinical and online contexts

我的工作是研究基因组信息扩散到临床和公共卫生环境中的影响。我特别感兴趣的是研究相关的疾病或人群的基因组通信被污名化和/或服务不足。我在模拟临床环境中以及通过社交媒体平台在线研究这些问题。我目前有几个正在进行或最近完成的研究，有助于这些目标。 在临床背景下，我和我的同事开展了一项研究，评估医生将肥胖基因组学信息引入临床体重管理的益处和/或风险（体重管理相互作用研究; NHGRI方案# 11-HG-0238）。我们感兴趣的是，这些信息将如何影响患者的健康相关的态度，信念，行为，以及患者对污名化的看法。该项目还旨在确定医生以患者为中心与以医生为中心的医疗保健方法是否可以减轻或放大基因组信息提供的潜在负面和积极后果。本研究正在沉浸式虚拟环境测试单元中进行沉浸式虚拟现实临床模拟。在本报告年度，我们起草了两份草稿，目前正在审查，并正在起草更多的草稿。 在继续检查和告知临床接触中与肥胖相关的基因组信息的提供方面，我和同事们开发了一项研究，评估了患者情绪对这些过程的影响。在这些临床接触中，恐惧和愤怒等情绪来自于收到的风险信息和对人际治疗的看法。从理论上讲，情绪的体验预计会影响患者对医生提供的基因组信息的解释和反应。我们设计了一种双管齐下的方法，使用基于互联网和沉浸式虚拟现实的仿真实验来解决这些过程。基于虚拟现实的模拟研究的数据收集工作已经完成。目前正在编写这一项目的三份手稿。 除了与临床基因组信息沟通相关的实验研究外，我还调查了在线和公共卫生相关环境中基因组信息传播的问题。与Colleen McBride一起，我通过实验研究了提供基于家族史的肥胖风险反馈对母亲的影响，关于他们的幼儿（NHGRI方案# 10-HG-0076），这在另一份报告中描述。我还准备并正在进行一项调查，评估个人对体重管理和遗传信息的兴趣和信息寻求行为。

My work investigates the impact of the diffusion of genomic information into clinical and public health contexts. I am particularly interested in studying genomic communication relevant to diseases or populations that are stigmatized and/or underserved. I examine these issues both in simulated clinical contexts, and online through social media platforms. I currently have several ongoing or recently completed studies that contribute to these aims. In the clinical context, my colleagues and I have mounted a study to assess the benefits and/or risks of a physician introducing obesity genomics information into clinical weight-management encounters (Weight Management Interaction Study; NHGRI protocol # 11-HG-0238). We are interested in how this information will influence patients' health-related attitudes, beliefs, behavior, and patient perceptions of stigmatization. The project also aims to determine whether a physician's patient-centered versus doctor-centered approach to a health care encounter could mitigate or amplify the potential negative and positive consequences of genomic information provision. This study is being conducted in an immersive virtual reality-based clinical simulation in the Immersive Virtual Environment Testing Unit. During this reporting year, we have drafted two manuscripts which are currently under review, and are in the process of drafting additional manuscripts. In continuing to examine and inform provision of obesity-related genomic information in clinical encounters, colleagues and I have developed a study that assesses the impact of patient emotion on these processes. Emotions such as fear and anger arise in these clinical encounters from sources like receipt of risk information and perceptions of interpersonal treatment. Theoretically, the experience of emotion is expected to influence patient interpretation and reaction to genomic information provided by a physician. We have designed a two-pronged approach using both an internet-based and an immersive virtual reality-based simulation experiment to address these processes. Data collection for the virtual reality-based simulation study has been completed. Three manuscripts are currently in preparation stemming from this project. In addition to my experimental research related to communication about genomic information in the clinic, I also investigate issues around dissemination of genomic information in online and public health-related contexts. Together with Colleen McBride, I have experimentally investigated the effect on mothers of providing family history-based obesity risk feedback with respect to their young children (NHGRI protocol # 10-HG-0076), which is described in a separate report. I have also prepared and am currently fielding a survey assessing individuals' interest in and information seeking behaviors with respect to weight management and genetics information.