2019:Research/Peer production of community science with personal data

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Notes


Abstract[edit | edit source]

Citizen/Community Science (CCS) involves community contributors in the research process. Unfortunately, their involvement is often limited to the collection and processing of data. In particular, citizen science projects on human subject research that involves personal data has been limited, given open issues around topics such as data access/portability and privacy of the participants. Consequently, citizen scientists are far from participating in all aspects of research, resulting in concerning power asymmetries – especially in health and human subjects research. While CCS shares many of the characteristics of commons-based peer production (CBPP) systems and key aspects of CBPP (e.g. sharing, intrinsic positive motivation, openness, collaboration, bottom-up innovation, community accountability) seem well-aligned with the goals of CCS, many traditional CCS projects fall short of being a genuine commons-based peer production process as they view volunteers as resources to be exploited.

To more expansively empower citizen, community, and other stakeholders to contribute to and perform research that uses personal data, at personal and collective scales, we have created a growing citizen science ecosystem called Open Humans. As a web-platform, Open Humans allows members to upload, connect, and privately store their personal data from a variety of data sources – such as genetic, activity, or social media data. Members can explore their own data and also choose to share some of those data with individual projects that can be academic or community-led. By implementing a granular sharing model, the ecosystem empowers participants to take control of which projects can access which bits of their personal data. Furthermore, projects that want to run on Open Humans are reviewed by the community, giving members the opportunity to raise potential issues and shape the final form of projects. By offering a toolbox to easily create new projects, the Open Humans ecosystems enables its members to implement new data sources as well as to efficiently ask an engaged community to join and contribute to research projects. Through this mechanism the platform allows for peer-production of citizen science projects and enables the formation of communities of interest around research questions and data types.

Along with a general presentation of the Open Humans ecosystem we will show-case some of the citizen science projects that are being facilitated through the system right now.

(A shorter summary of the principles and ideas around our platform was recently published.)

Authors[edit | edit source]

Bastian Greshake Tzovaras (Open Humans)

Relevance to Wikimedia Communities[edit | edit source]

Our work on generating a peer-production ecosystem for doing citizen science is closely related and aligned to the goals of Wikimedia and complementary to the Wikimedia projects. Instead of e.g. building an open knowledge corpus of encyclopedic knowledge, we are building a system that allows for the creation of open knowledge in the space of doing primary research, involving an open and contributory process to generating new scientific knowledge. As such we hope that the topic is of interest to the Wikimedia community.

Session type[edit | edit source]

22-min presentation.

Participants [subscribe here!][edit | edit source]