# Controlled-access genomic data (dbGaP, EGA)

Source: https://onco.cc/terms/controlled-access-data/  
OnCo record `controlled-access-data` (Term). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Controlled-access data can identify a person (raw sequence reads, germline variants), so it is held in archives like dbGaP and EGA and released only to approved researchers under an agreement.

## Summary

The European Genome-phenome Archive is a repository for potentially identifiable genetic, phenotypic and clinical data from biomedical research, held under secure storage (Wikipedia); dbGaP at the NCBI is the US counterpart. The GDC page on controlled data explains that TCGA's raw sequence and germline files require dbGaP authorisation through an institutional signing official, while processed, non-identifying data are open. Models trained on controlled data cannot release the data, and sometimes not the weights, without the same review.

## Fields

- Kind: Term
- Last checked: 2026-09-24
- Also known as: controlled-access data; controlled access data; controlled-access tier; dbGaP; EGA; European Genome-phenome Archive; database of Genotypes and Phenotypes; data access committee
- Tags: cansim-terms

## Notes

- Listed in the CanSim terms map 1.0.0 (docs/onco/terms.json, generated 2026-09-24), CC BY 4.0, attribution: CanSim project, an open, public-data-first cancer foundation-model programme; CanSim page path /terms/controlled-access-data.

## Sources

- Wikipedia: https://en.wikipedia.org/wiki/European_Genome-phenome_Archive
- dbGaP (NCBI): https://www.ncbi.nlm.nih.gov/gap/
- GDC: obtaining access to controlled data: https://gdc.cancer.gov/access-data/obtaining-access-controlled-data
- Wikipedia: https://en.wikipedia.org/wiki/European_Genome-phenome_Archive

## Connected records

- collections: [TCGA / NCI Genomic Data Commons](https://onco.cc/collections/tcga-gdc/)
- terms: [Cancer AI vocabulary (CanSim terms map)](https://onco.cc/terms/cancer-ai-vocabulary/), [Data use agreements and consent for research use](https://onco.cc/terms/data-use-agreements/), [HIPAA (Health Insurance Portability and Accountability Act)](https://onco.cc/terms/hipaa/), [Local-only language models over patient data (privacy by architecture)](https://onco.cc/terms/local-llm-reasoning-layer/), [TCGA open versus controlled data tiers](https://onco.cc/terms/tcga-tiers/)

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JSON: https://onco.cc/api/v1/entities/controlled-access-data.json