General Questions About the Data
The database of Genotypes and Phenotypes (dbGaP) archives and distributes the data from research studies that have investigated the interaction of human genotype and phenotype. Data available in dbGaP include phenotypes, genotypes, molecular assays or molecular sequence data, and genome wide association study (GWAS) summaries.
Individual-level data submitted to dbGaP is required to be de-identified. No names or identifiable information is attached to the data. However, an individual may still be identifiable through their genotype or molecular sequence data. To protect individual privacy, all individual level data is distributed solely through the dbGaP Authorized Access Portal.
Applying for Controlled Access dbGaP Data
dbGaP controlled-access data are available only through application to the dbGaP Authorized Access Portal. You must have institutional affiliation to apply for access. For the purpose of requesting access to controlled data, a Principal Investigator (PI) must be a tenure-track professor, senior scientist, or equivalent and have a valid eRA Commons account for logging in to the dbGaP access portal. NIH intramural investigators must submit a completed NIH_Intramural_Request_Form_Permission_Access_GDS_Data.pdf to the Genomic Data Sharing office.
The following is a general overview of the dbGaP Data Access Request (DAR) process:
- Applicant logs into the dbGaP Authorized Access Portal as a Principal Investigator (PI). The applicant creates a project and follows the steps to complete and submit the online application. Note: requests for several consent groups from different dbGaP studies can be included in the same project.
- The application is then forwarded to an institutional Signing Official (SO) for approval.
- After the SO approves the request, it moves to an NIH Data Access Committee (DAC) for review. The DAC reviews the application to confirm that the proposed research use(s) is consistent with the Data Use Limitations (DULs) of the requested dataset(s). These restrictions are established by the language in each study's informed consent materials, and therefore vary across studies in dbGaP.
- Once the DAC review is complete, the PI and SO are notified by email of approval or disapproval of the data access request (DAR).
- Once the approval email notification is received, the PI can download the data from dbGaP.
A more detailed explanation of the DAR process can be found in the GaP FAQ Manual.
dbGaP datasets are organized into consent groups that consist of data from study participants who have agreed to particular Data Use Limitations (DUL) as specified in the informed consent for the study. Refer to the Data Use Limitations section of the Genomic Data Sharing (GDS) website. Data access is approved by consent group. Note that, for a given study, participants in different consent groups do not overlap. Therefore, you will need to get access to the data from all consent groups in a study to obtain data from all participants in the study.
Data Access Requests (DARs) are contained in a project, which manages administrative information of the requests under the project. Individual DAR approvals are typically granted for a one-year period. After initial requests are made, more requests can be added to the same project. Different DARs under a project can therefore have different expiration dates. As a result, a Principal Investigator (PI) may receive multiple automatically generated email reminders for the expiration of different requests.
In addition to the DAR expiration date, the project itself must be reviewed and renewed once a year. To stay approved, a project must be renewed even when there are no changes needed. The renewal will reset the expiration date of the project and of all the DARs under the project for another year.
If the research for your project is no longer active, please close the project.