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

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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.

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  1. Abstract

    **Reviewer 1. Joon-Ho Yu ** Thank you for the opportunity to review this manuscript. Overall, I appreciate this argument for and description of Open Humans.  Broadly, the manuscript would benefit from greater attention to writing and organization. As my comments describe below, the "ethical analysis" offered is narrowly focused and appears to serve as a justification for the resource; yet, in its current state, I think the ethical analysis either should be removed or expanded. Ideally, the manuscript would be strengthened by a deepening and broadening of ethical considerations. Note that I use P(page)C(column)L(lines) to locate my comments for the authors.

    1. Abstract P1L36-37.  I am struck by the framing of this ethical problem as the responsibility of data subjects.  I assume this is intentional and would appreciate a little …
  2. Background

    **Reviewer 2. Birgit Wouters. **

    In this paper, the authors have presented an innovative solution to the complex and multi-faceted problem of sharing personal (health) data. Open Humans, a community-based platform, serves multiple aims: (1) to be ethically justifiable: a. by focusing upon granular, individual consent for each single project, thereby avoiding the issue of compatible purposes for secondary/tertiary/... processing; b. by putting individuals in control of their personal dataset; and c. by involving them in the governance of the ecosystem; (2) to enable both academic and citizen-led research; and (3) to break open existing data silos and allow for the merging of datasets. Serving these aims simultaneously is undoubtedly ambitious. Yet, the authors have demonstrated how Open Humans is designed to do just that. …