Open Humans: A platform for participant-centered research and personal data exploration | bioRxiv
peter.suber's bookmarks 2018-11-16
"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 fields of human subject research ranging from the social sciences to precision medicine. With this potential wealth of data come practical problems - such as how to merge data streams from various sources - as well as ethical problems - how can people responsibly share their personal information? Results: To address these problems we present Open Humans, a community-based platform that enables personal data collections across data streams, enables individuals to take control of their personal data, and enables academic research as well as patient-led projects. We showcase data streams that Open Humans combines - such as personal genetic data, wearable activity monitors, GPS location records and continuous glucose monitor data - along with use cases of how that data is used by various participants. 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 ethically used by academic and citizen scientists."