Communication of genomic information in clinical and online contexts

我的工作调查了基因组信息扩散到临床和公共卫生背景下的影响。我特别感兴趣的是研究与被污名化和/或服务不足的疾病或人群相关的基因组通信。我在模拟临床环境中和通过社交媒体平台在线研究这些问题。我目前有几项正在进行或最近完成的研究，这些研究都有助于实现这些目标。 在临床方面，我和我的同事开展了一项研究，以评估医生将肥胖基因组学信息引入临床体重管理会议的益处和/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与健康相关的态度、信念、行为和患者对污名化的看法。该项目还旨在确定医生以病人为中心与以医生为中心的医疗接触方法是否可以缓解或放大基因组信息提供的潜在消极和积极后果。这项研究是在沉浸式虚拟环境测试单元中基于沉浸式虚拟现实的临床模拟中进行的。在本报告年度，我们起草了两份手稿，目前正在审查中，并正在起草更多的手稿。 在继续检查和提供与肥胖相关的基因组信息的临床过程中，我和同事们开展了一项研究，评估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风险信息的接收和对人际关系处理的看法。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，使用基于互联网的模拟实验和基于沉浸式虚拟现实的模拟实验来解决这些过程。完成了基于虚拟现实的仿真研究的数据采集。目前正在为这一项目准备三份手稿。 除了我在临床上与基因组信息传播相关的实验研究外，我还调查了关于在线和公共卫生相关背景下基因组信息传播的问题。我和Colleen McBride一起对母亲提供基于家庭病史的肥胖风险反馈的影响进行了实验研究(NHGRI方案#10-HG-0076)，该方案在另一份报告中进行了描述。我还准备了一项调查，目前正在进行调查，评估个人对体重控制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.