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.
Below are some important considerations to take into account before releasing data.
(1) Does the data contain sensitive information? (2) Where was the specimen/data obtained from? (Living humans, deceased humans, animal models, in vitro cell culture) (3) Is the data provided anonymized? (4) Is the data de-identified according to HIPAA? (5) Does the data contain any protected health information (PHI)? (6) Is the data from a vulnerable population? (i.e. children, prisoners, pregnant women) (7) Does the data include information about individuals that was collected either from the individuals or others located outside of the United States of America?
For more information, please read policies in our Data Access page or reach out to our governance analysis team at gray-foundation-service@sagebase.org.
For specific information regarding synapse governance - see https://help.synapse.org/docs/Synapse-Governance.2004255211.html