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.
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?
Data Access Types
Data access for Gray Foundation corresponds to the general data access types described for the Synapse platform.
However, we will try to color-code the types and provide any other helpful and consortium-specific context for each type below.
Private Access Data (pink tag)
- Data is private and downloable only through the individuals or teams explicitly granted with those permissions.
- Admins for the team's repository can grant view or download access by adding individuals or teams to the folder or project. This allows data to be shared for collaboration without making data public.
- In conversational context, this data might also be referred to as "under embargo".
Controlled Access (yellow tag)
- Registered Synapse users can download this data as long as they fulfill additional actions such as accepting Conditions of Use, submitting a statement, or getting an approval from governance.
- Since these controls are implemented through a different data access layer, for certain controls, once they are applied, even individuals on the Access Control List with download permissions will need to complete the required action to download data.
Public Data (blue tag)
- Anyone on the web can view the data, but only registered Synapse users can download this data. Data can be downloaded without any restrictions or additional steps required.
- This is the most common data access type for Gray Foundation.
Open Data (green tag)
- Anyone on the web can view and download this data, no account needed.
- Most data that appears in an analysis tool/portal (e.g. cBioPortal) should be of this type.
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