Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information

项目总结/摘要 与健康相关的信息不再仅仅来自电子病历， 当人们使用移动的应用程序、搜索互联网、佩戴 活动监测设备，访问直接面向消费者的医疗保健测试，或简单地在 社交媒体许多努力，包括与精准医学倡议（PMI）相关的努力， 推动了基于人群的大型数据库的发展，这些数据库将临床和遗传学联系起来， 信息.课程正在多种环境中进行-学术和非学术， 商业和公共部门-将这些遗传和临床数据与从以下来源获得的数据联系起来： 个人的"健康相关的数字足迹"，以深入了解社会，行为和 环境健康暴露和风险因素。目前的隐私保护方法非常 具体部门，无视其他考虑因素，如信息的内容或其 目的.这些方法也只提供了部分覆盖的研究活动， 使用个人的数字足迹。拟议的研究将：a）使用定性方法， 定义与健康相关的数字足迹的范围，并描述潜在的隐私 从专家和消费者的角度关注; B）衡量消费者的信息 使用联合分析和定性方法在不同情况下分享偏好;以及c） 确定消费者对不同来源和用户的隐私保护的偏好， 信息和预期用途通过混合方法。我们的方法基于 确定保护是否适用于临床信息的相应伦理框架 可以应用于健康相关的数字信息。我们的核心假设是， 现行法规强调信息是否是在医疗保健过程中获得的， 遇到，消费者会关心较少的信息来源，更多的是关于目的， 其随后被重新使用。这项研究的首要目标是创造一个新的 考虑到个人健康的遗传和健康信息隐私框架- 相关数字足迹-超越医疗领域收集的信息界限 遭遇研究结果将为政策制定者创造新的方法提供证据， 平衡消费者利益和大量研究的健康信息隐私 和临床机会嵌入新的数据来源。

PROJECT SUMMARY/ABSTRACT Health-relevant information no longer comes just from electronic medical records but also from the digital footprints left behind when people use mobile applications, search the internet, wear activity monitoring devices, access direct-to-consumer health care testing, or simply converse in social media. Many efforts including those tied to the Precision Medicine Initiative (PMI) are fueling the development of large population-based databases that link clinical and genetic information. Programs are underway in a multitude of settings – academic and non-academic, commercial and public sector – to link these genetic and clinical data with data obtained from individuals' `health-relevant digital footprint' to gain insights into social, behavioral and environmental health exposures and risk factors. Current approaches to privacy are highly sector specific and blind to other considerations, such as the content of information or its purpose. These approaches also provide only partial coverage for research activities that make use of individuals' digital footprints. The proposed research will: a) use qualitative methods to define the scope of the health-relevant digital footprint and characterize potential privacy concerns from the perspective of experts and consumers; b) measure consumers' information sharing preferences in different contexts using conjoint analysis and qualitative methods; and c) determine consumers' preferences for privacy protections for different sources and users of information and intended uses through mixed methods. Our approach is grounded in a consequential ethics framework to determine whether protections applied to clinical information might be applied to health-relevant digital information. Our central hypothesis is that whereas current regulations emphasize whether information was obtained in the course of health care encounters, consumers will care less about information source, and more about the purpose for which it is later reused. The overarching goal of this research is to create a new framework for genetic and health information privacy that considers individuals' health- relevant digital footprints—beyond the boundaries of information gathered in medical encounters. The findings will provide evidence for policymakers to create new approaches to health information privacy that balance the interests of consumers with the immense research and clinical opportunities embedded in novel sources of data.