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

View ORCID ProfileBastian Greshake Tzovaras, View ORCID ProfileKevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, View ORCID ProfileBeau Gunderson, View ORCID ProfileTim Head, Dana Lewis, View ORCID ProfileOded Nov, View ORCID ProfileOrit Shaer, View ORCID ProfileJason Bobe, View ORCID ProfileMad Price Ball
doi: https://doi.org/10.1101/469189
Bastian Greshake Tzovaras
1Open Humans Foundation, USA
2Lawrence Berkeley National Laboratory, Berkeley, CA, USA
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Kevin Arvai
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Mairi Dulaney
1Open Humans Foundation, USA
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Vero Estrada-Galiñanes
3QoL Lab, Department of Computer Science, University of Copenhagen, Denmark
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Beau Gunderson
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Tim Head
4Wild Tree Tech, Switzerland
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Dana Lewis
5OpenAPS, Seattle, WA, USA
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Oded Nov
6Tandon School of Engineering, New York University, New York, USA
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Orit Shaer
7Wellesley College, Wellesley, MA, USA
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Jason Bobe
8Institute for Next Generation Healthcare, Icahn School of Medicine at Mount Sinai, NY, USA
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Mad Price Ball
1Open Humans Foundation, USA
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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 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.

Copyright 
The copyright holder for this preprint is the author/funder, who has granted bioRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license.
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Posted November 14, 2018.
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Open Humans: A platform for participant-centered research and personal data exploration
Bastian Greshake Tzovaras, Kevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, Beau Gunderson, Tim Head, Dana Lewis, Oded Nov, Orit Shaer, Jason Bobe, Mad Price Ball
bioRxiv 469189; doi: https://doi.org/10.1101/469189
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Open Humans: A platform for participant-centered research and personal data exploration
Bastian Greshake Tzovaras, Kevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, Beau Gunderson, Tim Head, Dana Lewis, Oded Nov, Orit Shaer, Jason Bobe, Mad Price Ball
bioRxiv 469189; doi: https://doi.org/10.1101/469189

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