Please read both the starting point of the dbGaP data request and the dbGaP procedures for accessing data at the individual level in order to obtain detailed instructions from the NCBI on requesting access to data. By using TCGA data (including open and controlled data) on the GSC, users implicitly agree to comply with the TCGA Responsible Use Policy and publication guidelines. All users and their institutions seeking access and use of TCGA Controlled Data must also recognize their consent to the TCGA policies and procedures outlined in the certification of data usage related to their dbGaP application. Detection data is data that has been “deleted from all HIPAA identifiers” – a DUA is generally not required, but some institutions may need an AEA just to cover their data transfer to another entity. A limited set of data (LDS) is one that “has been removed from all HIPAA data, with the exception of age/date and city/state/Zip” – an LDS DUA is required if HIPAA authorization for data sharing has not been obtained from participants. If participants have signed a HIPAA authorization to share data, a DUA referring to an LDS is not appropriate. The GSC respects internationally recognized policies for access to data and the publication of data developed to allow broad access to genomic information while protecting the rights of those who have donated tissue to the analysis. Controlled access data is not available until you have provided the required documents and have been approved by the Data Access Committee (DAC). By using TARGET Controlled Data on the GSC, users implicitly agree to comply with TARGET data usage restrictions and the policies and procedures outlined in certifying the use of data as part of their dbGaP application, while users can review target open data on the GSC without restriction. All TARGET data users in the GSC implicitly agree to comply with TARGET`s publication guidelines.
Data Use Agreements (AADs) are unfunded contracts that define the conditions for non-public data subject to limited use. An AED is generally used to help parties who wish to share data better understand important information about the data exchanged, such as data protection rights related to the transfer of confidential or protected data, data protection obligations, data usage restrictions, and potential commitments related to the use of data. Protected health information is data that “goes beyond what would be considered LDS” – PHI data sharing requires a BUSINESS associate agreement (BAA) if subscribers have not signed a HIPAA authorization to share data. Data in this category covers all human data at the individual level (for example. B demographic descriptors, phenotypic measurements, 3D images) and require the following data access process: The database offers two levels of access: open (available to all without restrictions) and controlled (pre-authorization obligation). Controlled access to the database allows you to download data from individual genotypes and phenotypes that have been de-defined (i.e. no personal identifiers such as name, etc.). Leave about 4-6 weeks for a response. If approved, you have access to human data 180 days after the authorization date.
