Sage has determined that key data donors will not share data unless that those accessing the data electronically (1) have provided verifiable identity information and (2) are open/transparent to the public about who they are. Sage has further determined that valid researchers are willing to meet these terms if the verification process is not unduly burdensome or requires divulging sensitive personal and/or financial information. The process has to introduce an appropriate level of friction to obtaining access to data and be reasonably (if not perfectly) able to differentiate between valid researchers and others.
Currently Synapse allows anonymous account creation. Synapse does support "tier 3" access restrictions which can be used to require would-be data accessors to submit documentation justifying data access to the Synapse Access and Compliance Team (ACT). This mechanism could be used to submit identity verification information. However, since identity verification and openness transparency is a common requirement for many data sets, it would be helpful (both to researchers and the ACT) if each user would only have to do this process once to meet the access requirements for many data sets.
Synapse allows users to complete a user profile but the information may be changed at any time. If identity openness transparency is a requirement for data access we must ensure that it continue (that accounts not be anonymized) while users have access to the donated data.
To be transparent a user must provide: name (first and last), organization, location (including country) and ORCID.
Approach
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