DOI: 10.1101/469189Nov 14, 2018Paper

Open Humans: A platform for participant-centered research and personal data exploration

BioRxiv : the Preprint Server for Biology
Bastian Greshake TzovarasMad Price Ball


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 come practical problems (such as how to merge data streams from various sources),as well as ethical problems (such as how to best 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 facilitates 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 th...Continue Reading

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