CHS: Small: Collaborative Research: Human-computer interaction for personal genomics: understanding, informing, and empowering users

这个项目将探索人机交互在帮助非专家理解和参与他们的个人基因组信息方面所扮演的角色。近年来，非专家可获得的个人基因组信息的规模和范围急剧增长，通常是在线和互动形式。因此，个人面临着前所未有的关于自己的敏感且往往复杂的信息，这些信息影响着他们的决定、情绪状态和福祉。因此，关于人们如何理解和参与他们的个人基因组信息，以及他们为了推进科学和生物医学研究而分享这些信息的舒适度的问题，不仅对生命科学研究人员和政策制定者至关重要，而且对人机交互研究人员来说也是一个紧迫的问题。因为使外行人能够与这些信息互动的技术是新的，所以对它的研究很少。鉴于非专家可获得的基因组信息的规模和范围的巨大增长，这项工作有可能对人机交互理论和实践产生影响，通过研究有关非专家与复杂科学信息交互的基本问题，以及用户界面设计干预对学习和共享个人基因组信息的影响。将寻求五个领域的进展：(1)支持非专家与个人基因组信息有意义参与的功能要求；(2)用户界面设计干预如何影响用户共享个人基因组数据意愿的基础知识；(3)由非专家呈现和探索丰富、复杂和高度个性化数据集的新颖交互技术；(4)设计与个人基因组信息有效交互的指南；(5)评估与个人基因组信息交互技术有效性的方法。

This project will explore the roles human-computer interaction can play in helping non-experts to understand and engage with their personal genomic information. Recent years are seeing a dramatic growth in the scale and scope of personal genomic information that is available to non-experts, often online and in interactive forms. As a result, individuals are confronted with unprecedented amounts of sensitive and often complex information about themselves, which influences their decisions, emotional states and well-being. Consequently, questions about how people make sense of and engage with their personal genomic information, and how comfortable they feel about sharing it in order to advance scientific and biomedical research, are not only of paramount importance for life sciences researchers and policy makers, but also a pressing issue for human-computer interaction researchers. Because the technology that enables lay people to interact with such information is new, there is little research on it. Given the tremendous growth in the scale and scope of genomic information available to non-experts, this work has the potential to make an impact on human-computer interaction theory and practice by investigating fundamental issues concerning non-expert interaction with complex scientific information and the impact of user interface design interventions on learning from, and sharing of, personal genomic information. Advances in five areas will be sought: (1) Functional requirements for supporting meaningful engagement of non-experts with personal genomic information; (2) Fundamental knowledge of how user interface design interventions impact users' willingness to share personal genomic data; (3) Novel interaction techniques for presenting and exploring rich, complex, and highly personalized data sets by non-experts; (4) Design guidelines for effective interaction with personal genomic information, and (5) Methodology for evaluating the effectiveness of techniques for interaction with personal genomic information.