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

View ORCID ProfileBastian Greshake Tzovaras, View ORCID ProfileMisha Angrist, 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 ProfileAthina Tzovara, View ORCID ProfileJason Bobe, View ORCID ProfileMad Price Ball
doi: https://doi.org/10.1101/469189
Bastian Greshake Tzovaras
Open Humans Foundation, USALawrence Berkeley National Laboratory, Berkeley, CA, USA
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  • For correspondence: bgreshake@gmail.com
Misha Angrist
Social Science Research Institute, Duke University, Durham, NC, USA
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Kevin Arvai
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Mairi Dulaney
Open Humans Foundation, USA
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Vero Estrada-Galiñanes
QoL Lab, Department of Computer Science, University of Copenhagen, Denmark
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Beau Gunderson
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Tim Head
Wild Tree Tech, Switzerland
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Dana Lewis
OpenAPS, Seattle, WA, USA
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Oded Nov
Tandon School of Engineering, New York University, New York, USA
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Orit Shaer
Wellesley College, Wellesley, MA, USA
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Athina Tzovara
Helen Wills Neuroscience Institute, University of California, Berkeley, CA, USAInstitute of Computer Science, University of Bern, Switzerland
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Jason Bobe
Institute for Next Generation Healthcare, Icahn School of Medicine at Mount Sinai, NY, USA
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Mad Price Ball
Open 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 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 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.

Footnotes

  • ↵* mpball{at}gmail.com

  • Expands on the data portability and GDPR sections

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 May 02, 2019.
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Open Humans: A platform for participant-centered research and personal data exploration
Bastian Greshake Tzovaras, Misha Angrist, Kevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, Beau Gunderson, Tim Head, Dana Lewis, Oded Nov, Orit Shaer, Athina Tzovara, 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, Misha Angrist, Kevin Arvai, Mairi Dulaney, Vero Estrada-Galiñanes, Beau Gunderson, Tim Head, Dana Lewis, Oded Nov, Orit Shaer, Athina Tzovara, Jason Bobe, Mad Price Ball
bioRxiv 469189; doi: https://doi.org/10.1101/469189

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