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

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.