TY - JOUR
T1 - Open Humans
T2 - A platform for participant-centered research and personal data exploration
AU - Greshake Tzovaras, Bastian
AU - Angrist, Misha
AU - Arvai, Kevin
AU - Dulaney, Mairi
AU - Estrada-Galiñanes, Vero
AU - Gunderson, Beau
AU - Head, Tim
AU - Lewis, Dana
AU - Nov, Oded
AU - Shaer, Orit
AU - Tzovara, Athina
AU - Bobe, Jason
AU - Price Ball, Mad
N1 - Funding Information:
B.G.T. is supported by a fellowship from Open Humans Foundation, which operates Open Humans. M.P.B. is funded for full-time work at Open Humans Foundation as Executive Director and President. M.A. is a paid consultant to Genetic Alliance and Variant Bio.
Funding Information:
The development and operation of Open Humans has been supported through grants from the Robert Wood Johnson Foundation, John S. and James L. Knight Foundation, and Shuttleworth Foundation. ”AT is supported by the Interfaculty Research Cooperation ”Decoding Sleep: From Neurons to Health & Mind“ of the University of Bern”
Publisher Copyright:
© 2019 The Author(s) 2019. Published by Oxford University Press.
PY - 2019/6/1
Y1 - 2019/6/1
N2 - 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.
AB - 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.
KW - citizen science
KW - crowdsourcing
KW - database
KW - open data
KW - participatory science
KW - peer production
KW - personal data
UR - http://www.scopus.com/inward/record.url?scp=85068840500&partnerID=8YFLogxK
U2 - 10.1093/gigascience/giz076
DO - 10.1093/gigascience/giz076
M3 - Review article
C2 - 31241153
AN - SCOPUS:85068840500
SN - 2047-217X
VL - 8
JO - GigaScience
JF - GigaScience
IS - 6
M1 - giz076
ER -