DS-PACK: Tool assembly for the end-to-end support of controlled access human data sharing

Area of Science:

• Genomics
• Data Science
• Bioinformatics

Background:

• The EU General Data Protection Regulation (GDPR) mandates a shift towards federated models for sensitive human data sharing.
• Centralized genome-phenome archives are transitioning to federated systems to comply with data protection regulations.
• Research institutions often struggle with the resources needed to implement controlled data access processes.

Purpose of the Study:

• To introduce DS-PACK, a reusable, open-source middleware solution.
• To semi-automate end-to-end controlled access processes for sensitive human data, from submission to access.
• To embed data protection principles within data sharing infrastructure.

Main Methods:

• Development of DS-PACK as a middleware tool assembly.
• Centralized access control management with distributed enforcement.
• Integration with cloud-based applications for data access.
• Implementation in a production environment at the ELIXIR Luxembourg data hosting platform.

Main Results:

• DS-PACK provides a semi-automated solution for controlled data access processes.
• The tool assembly ensures data protection principles are integrated throughout.
• It centralizes access control management while distributing enforcement.
• DS-PACK supports data access via cloud-based applications.

Conclusions:

• DS-PACK facilitates compliance with GDPR for federated data sharing.
• The tool assembly empowers research institutions by simplifying controlled access implementation.
• Its production use demonstrates a viable operational model for secure, federated data sharing.