Paper short abstract:

This paper analyses ideas and challenges of communal data sharing by studying how a community is formed and a collective decision is made.

Paper long abstract:

With the rapid development of big data techniques, the systematic study of populations, social behaviours and public health through secondary analysis of massive data collections has become an emerging phenomenon nowadays. This technological revolution has brought new challenges in the legal arena for the due process data sharing, the right to privacy and personal data protection. It has also started to change the relationships between citizens and government and calls upon a new form of governance, which focuses not only on transparency and social accountability, but also community participation that goes beyond traditional approaches of privacy safeguards via individual consent and anonymity of identifiable personal information.

Nevertheless, how to constitute a responsible approach to balance the risk and usability of secondary data and institutionalise that demand by improving public participation remains a question. By critically reviewing existing data access policies and practices used in health-related data commons, for example those with rare diseases who would like to exchange information about medical conditions and treatments, this paper analyses how a community may maintain or fail to maintain a coherent boundary for trustful group sharing of sensitive data, and how collective decisions are being made by the community members. While a group decision making process has gradually been reduced to an e-voting behavior, it provides a shallow sense of participation, which is limited to vote casting only, rather than taking part in a deeper collective engagement and participation as the so-called participant-centric governance for communal data sharing is claimed.