What is Governance?
Data governance is the management of data access and availability.
Data deposited in the Synapse platform have access control features implemented by the platform. Data sharing settings are negotiated by the sharing agreements between Sage Bionetworks and research teams. Data is not made public until the project teams agree to release the data.
Data Sharing Phases for Gray Foundation
Data will be shared in three phases:
Private Phase
Data is accessible only the by Contributor and Contributor-designated individuals. This is the default configuration unless decided otherwise by the grant (e.g. certain pilot projects start in the Collaborative Sharing Phase).
Collaborative Sharing Phase
Curated Data is accessible by the “in network” investigators.
Public Sharing Phase
Data is accessible by the greater research community (with appropriate controls).
For Contributing Teams -- What the Process Looks Like
Much governance activity takes place before data is even generated or deposited into Synapse. Via the initial Governance Working Group, negotiations with each institution, and more granular data sharing plans requested from data contributors, the DCC collects the agreements and information needed for tailoring governance and that answer some of the below questions:
- What are the applicable policies given the data's territorial origins? (e.g. data from Europe fall under GDPR jurisdiction)
- What are the applicable policies given the data's institutional origins?
- What are the conditions given the data contributors' preferences?
- Does the data contain sensitive information?
- What were the patient consents for this data, for human data?
- Is the data provided de-identified according to HIPAA, for human data?
TODO - Governance lifecycle chart
For Data Re-users
For researchers hoping to understand governance so that they can re-use the data, please see the next Data Access section.