Communal Sharing of Sensitive Data
Tyng-Ruey Chuang and Chih-hsing Ho
Academia Sinica, Taipei, Tawan

The is the slideset for a talk at the SciDataCon 2018 session Issues in the Relationships of Upstream Research Data to Downstream Innovation.

This is still a work in progress. Feedback and comment welcomed!

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Ending Thoughts: Toward A Participant-Centric Governance Framework

A communal sharing model is established by forming a community data pool in which each member is entitled to participate in the community decision making on an equal footing. This innovation involves in incorporating a participatory approach for governing the collection, sharing and access of sensitive data in the community-based data sharing model. The central aspect of participation and informational control can facilitate communication among members of the community. This participant-centric initiative relies not only on an operative IT system that helps set preferences for notification, but also on communication about the way a member can choose how and whether to share the data or put restrictions on data sharing. In contrast to the traditional privacy framework that pays predominant attention only to the data and process of anonymization, this participatory communal sharing model emphasizes on the amount of control that data subjects have over their information. It also deals with who may have access to the data in the communal pool and to whom such data will be able to be shared.

There are multiple benefits for establishing this participatory privacy framework. Within the community itself, it is about how to add incentives among the members to share data and to improve a participatory approach for making possible a bottom-up decision making. Outside of the community, it is to enhance cross-group data sharing perhaps with different types of communities holding different goals. However, as the members of the community normally share commonality with each other that helps form a characteristic of the entire community as well. One of the goals of this approach is to make sure that the privacy protection of the entire community will be secured. In the end, ideally big data is transformed into a public good, so ultimately, the privacy governance framework for this innovation will be relying on the form of collective stewardship as well.