WGS Study From Pediatrics

This is the data committee

Investigators approved to download controlled-access data from and their institutions are expected to abide by the Genomic Data User Code of Conduct through their agreement to the Data Use Certification. The Data Use Certification, co-signed by the investigators requesting the data and their Institutional Signing Official, specifies the conditions for the secondary research use of controlled-access data, including: -Using the data only for the approved research; -Protecting data confidentiality; -Following, as appropriate, all applicable national, tribal, and state laws and regulations, as well as relevant institutional policies and procedures for handling genomic data; -Not attempting to identify individual participants from whom the data were obtained; -Not selling any of the data obtained from the data repositories; -Not sharing any of the data obtained from controlled-access data repositories with individuals other than those listed in the data access request; -Agreeing to report any violation of the GDS Policy to the appropriate DAC(s) as soon as it is discovered; -Reporting research progress using controlled-access datasets through annual access renewal requests or project close-out reports; -Acknowledging in all oral or written presentations, disclosures, or publications the contributing investigator(s) who conducted the original study, the funding organization(s) that supported the work, the specific dataset(s) and applicable accession number(s), and the data repositories through which the investigator accessed any data. The committee expects that investigators who are approved to use controlled-access data will follow guidance on security best practices that outlines expected data security protections (e.g., physical security measures and user training) to ensure that the data are kept secure and not released to any person not permitted to access the data.