The National Institutes of Health (NIH) has updated its security standards in its NIH Security Best Practices for Controlled-Access Data Subject to the NIH Genomic Data Sharing (GDS) Policy. Effective January 25, 2025, adherence to the updated security standards in the NIH Security Best Practices for Users of Controlled-Access Data will be included in new or renewed Data Use Certifications or similar agreements.
In order to comply with these requirements, USC researchers must use one of the controlled-access repositories authorized by the NIH in order to secure human genomic and phenotypic data until project closeout or renewal. A list of these repositories may be found at the NIH Security Best Practices for Controlled-Access Data and Repositories website. Below is a summary of some of the controlled-access repositories that meet NIH’s expectations.
Examples of general repositories:
AnVIL
The NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-Space, or AnVIL, provides a cloud environment for the analysis of large genomic and related datasets.
According to AnVIL, by providing a unified environment for data management and compute, it eliminates the need for data movement, allows for active threat detection and monitoring, and provides elastic, shared computing resources that can be acquired by researchers as needed.
Database of Genotypes and Phenotypes (dbGaP)
dbGaP archives and distributes the results of studies that have investigated the interaction of genotype and phenotype. Such studies include genome-wide association studies, medical sequencing, molecular diagnostic assays, as well as association between genotype and non-clinical traits. The individual level data hosted at the dbGaP is distributed through a controlled access system.
Examples of topic specific repositories:
National Institute of Mental Health Data Archive (NDA)
The National Institute of Mental Health Data Archive (NDA) makes available human subjects data collected from hundreds of research projects across many scientific domains.
NDA: National Institute on Alcohol Abuse and Alcoholism Data Archive (NIAAADA)
The National Institute on Alcohol Abuse and Alcoholism Data Archive (NIAAADA) is a data repository that houses and shares human subjects data generated by NIAAA-funded research.
For a list of all available repositories, please visit the NIH Scientific Data Sharing webpage.
If you have any questions, please contact Michelle Cullen in the Office of Culture, Ethics, and Compliance at cullenm@usc.edu.