Data shared in Synapse may have Conditions for Use that define restrictions on how it may be disclosed or what the data set may contain based on privacy laws or regulation.
You must be a Certified User to contribute data to Synapse. You are responsible for determining if the data you would like to contribute is Controlled Use and therefore requires Conditions for Use. Carefully consider the specific risks and appropriate protections required before sharing your data.
If there are no ethical, legal or regulatory reasons to impose Conditions for Use, the data can be used for any lawful research purpose. All human data shared in Synapse, with or without Conditions for Use, must be de-identified according to HIPAA standards and comply with all applicable privacy laws and regulations. Guidance on de-identification according to HIPAA rules can be found here.
Conditions for Use can be set at the Project, Folder, File and Table level. We recommend grouping Files that require the same Conditions for Use in a dedicated Folder within your Project. For more information about setting Conditions for Use please see Access Controls and Data GovernanceOne of the ways that Synapse governance supports responsible data sharing is through data access types. While /wiki/spaces/DOCS/pages/2007072795 are applied to the user, data access types are applied to the data itself. The parameters of data access for any dataset is defined by contributors of that data.
Data access can be controlled in two layers: sharing settings and conditions for use.
Sharing settings enable you to list the individuals or teams who can view your project, and the permissions those groups have with respect to a specific dataset. You can use sharing settings to authorize who can view, edit, download, or delete data.
You can add an additional layer of data protection by applying conditions for use. These restrictions define how users who have permission to download data may use it. Conditions for use may include IRB approval or other restrictions that you define as the data contributor.
When both sharing settings and conditions for use are applied, then users must qualify for data access through both of these restrictions.
For information on sharing settings and conditions for use, including how to set them, see /wiki/spaces/DOCS/pages/2024276030.
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There are four data access types in Synapse:
Private Access Data
Data set to private access is visible only to you and other users whom you select in sharing settings. It is not viewable to any other Synapse users. This is the default setting when you create a new project in Synapse.
Controlled Access Data
Data set to controlled access can be available to registered, certified, and validated users that fulfil specific requirements for data access through conditions of use that you set.
Controlled access data typically represents human data that contains sensitive information. Misuse of this data could potentially cause harm to those individuals or group. Therefore, data contributors can define conditions for use to specify how the data can be used by those who have access to it. Controlled access data can only be downloaded and used by those authorized to do so, and this data may never be redistributed. Any Synapse user wishing to use controlled access data must individually request access.
Examples of controlled access data include one or more of the following:
Data at risk of re-identifying research participants
Genetic sequence or genotype data from living individuals
Data from “vulnerable” populations as defined using OHRP guidelines
Data generated with restrictions or requirements for use as outlined in informed consents or legal agreements
To learn more about conditions for use and how to apply them to your data, see Conditions for Use.
Open Access Data
Data set to open access is available to all registered Synapse users, without additional use limitations.
Typically, open access data include:
Data from model organisms, species, or strains
Non-biological data, like data used for the calibration of instruments
Human data that are:
Publicly available elsewhere
De-identified and non-sensitive, with no known sharing or use restrictions
Self-contributed and unambiguously consented for open data sharing and use
Anonymous Access Data
Data set to anonymous access is available for anyone (even anonymous, non-registered users)
Anonymous access data could be:
Downloadable wiki content, such as newsletters or announcements of data releases
Metadata about a file or dataset
Data available under a public domain
To make your open data available to anonymous users, contact the Synapse Access and Compliance Team (ACT) at act@sagebase.org.