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Open Humans: A Platform For Participant-centered Research And Personal Data Exploration

B. Greshake Tzovaras, M. Angrist, Kevin J Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, Beau Gunderson, T. Head, D. Lewis, Oded Nov, Orit Shaer, A. Tzovara, Jason R. Bobe, Mad Price Ball
Published 2019 · Computer Science, Medicine

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Abstract Background Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data comes practical problems (e.g., how to merge data streams from various sources), as well as ethical problems (e.g., how best to balance risks and benefits when enabling personal data sharing by individuals). Results To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g., personal genetic data, wearable activity monitors, GPS location records, and continuous glucose monitor data), along with use cases of how the data facilitate various projects. Conclusions Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources, as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy.
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