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

项目摘要/摘要 与健康相关的信息不再仅仅来自电子病历，还来自 人们使用移动应用程序、搜索互联网、穿戴时留下的数字足迹 活动监控设备，访问直接面向消费者的医疗保健测试，或只需在 社交媒体。许多努力，包括与精准医学倡议(PMI)有关的努力，都是 推动以人群为基础的大型数据库的发展，将临床和基因联系起来 信息。课程在多种环境中进行--学术的和非学术的， 商业和公共部门-将这些基因和临床数据与从 个人‘与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是高度 因部门而异，对其他考虑因素视而不见，如信息的内容或其 目的。这些方法也只为研究活动提供部分覆盖，这些活动 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分享不同情况下的偏好；以及c) 确定消费者对不同来源和用户的隐私保护偏好 通过混合方法提供信息和预期用途。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 可能应用于与健康相关的数字信息。我们的中心假设是，鉴于 目前的法规强调信息是否在保健过程中获得 相遇，消费者将不再那么关心信息来源，而是更关心目的 它后来被重复使用。这项研究的总体目标是创建一个新的框架 考虑个人健康相关数字的遗传和健康信息隐私 足迹-超越了在医疗接触中收集的信息的界限。调查结果 将为政策制定者创造健康信息隐私的新方法提供证据 这平衡了消费者的利益和巨大的研究和临床机会 嵌入到新的数据源中。

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.