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Gigascience. 2019 Jun 1;8(6). pii: giz076. doi: 10.1093/gigascience/giz076.

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

Author information

1
Open Humans Foundation, 500 Westover Dr #10553, Sanford, NC, 27330, USA.
2
Lawrence Berkeley National Laboratory, One Cyclotron Road, Berkeley, CA 94720, USA.
3
Social Science Research Institute, Duke University, 140 Science Drive, Durham, NC 27708, USA.
4
QoL Lab, Department of ComputerScience, University of Copenhagen, Sigurdsgade 41, DK-2200 Copenhagen, Denmark.
5
IDE, University of Stavanger, Kjell Arholmsgate 41, 4036 Stavanger, Norway.
6
Wild Tree Tech, Froehlichstrasse 42 5200 Brugg Switzerland.
7
OpenAPS, Seattle, WA, USA.
8
Tandon School of Engineering, New York University, 6 MetroTech Center, Brooklyn, NY 11201, USA.
9
Wellesley College, 106 Central Street - Wellesley, MA 02481, USA.
10
Helen Wills Neuroscience Institute, University of California, Berkeley 174 Li Ka Shing Center, Berkeley, CA 94720, USA.
11
Institute of Computer Science, University of Bern, Neubrückstrasse 10, 3012 Bern, Switzerland.
12
Institute for Next Generation Healthcare, Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place New York, NY 10029-5674, USA.

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.

KEYWORDS:

citizen science; crowdsourcing; database; open data; participatory science; peer production; personal data

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