Abstract
BackgroundMany 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).ResultsTo 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.ConclusionsOpen 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.
Highlights
Many aspects of our lives are digitized and connected to the internet
Individuals are 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
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
Summary
From biomedical and health research to social sciences studies, is experiencing rapid changes. While there is no consensus on how research consent for existing personal data should be performed, we know that participants desire more granular abilities to manage data sharing: to decide who can and cannot see it, under what circumstances, and what can and cannot be done with it [50] Such individual control will be especially critical in the sensitive context of precision medicine [24]. Participants are rarely given an easy way to help in designing a study, let alone running their own To close these gaps we developed Open Humans, a community-based platform that enables its members to share a growing number of personal data types, participate in research projects and create their own, and facilitate the exploration of personal data by and for the individual member. Along with a description of the platform itself and its power and limitations, we present a set of examples of how the platform is already being used for academic and participant-led research projects
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