GHGA
Published July 13, 2022 | Version 1.0
Project milestone Open

Consent Modules for Data Sharing via the German Human Genome-Phenome Archive (GHGA)

Creators

  • 1. Section Translational Medical Ethics, National Center for Tumor Diseases (NCT), University Hospital Heidelberg (UKHD), Heidelberg
  • 2. Bioinformatics Department, Medical Genetics Center Munich (MGZ), Munich; Institute of Neurogenomics, Helmholtz Munich (HMGU), Munich
  • 3. German Human Genome-Phenome Archive (GHGA, W620), German Cancer Research Center (DKFZ), Heidelberg
  • 4. Institute of Medical Genetics and Applied Genomics, University of Tübingen, Tübingen; Centre for Rare Diseases (ZSE) Tübingen, University Hospital Tübingen, Tübingen
  • 5. Applied Bioinformatics, Department of Computer Science, University of Tübingen, Tübingen; Institute for Bioinformatics and Medical Informatics, University of Tübingen, Tübingen; Institute for Translational Bioinformatics, University Hospital Tübingen, Tübingen
  • 6. Faculty of Law, BioQuant Centre, Heidelberg University, Heidelberg
  • 7. Section Translational Medical Ethics, National Center for Tumor Diseases (NCT), German Cancer Research Center (DKFZ), Heidelberg
  • 8. Division of Computational Genomics and Systems Genetics, German Cancer Research Center (DKFZ), Heidelberg; European Molecular Biology Laboratory (EMBL), Heidelberg

Description

The German Human Genome-Phenome Archive (GHGA) is a research consortium which is currently establishing a federated data infrastructure allowing the secure storage of and controlled access to omics and related health data consented for scientific research use. This whitepaper contains guidance for Data Submitters on how to update their consent forms such that data may be shared via GHGA for secondary research use.

Notes

Funding: The GHGA consortium is funded by the German Research Foundation (DFG) within the framework of the National Research Data Infrastructure (NFDI).

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GHGA_Consent_Modules_v1.0_July2022.pdf

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