About DAC KU Leuven/UZ Leuven
The sharing of research data obtained in the context of human genome research is increasingly encouraged. Funders and journals require researchers to share the research data on which the results of their studies are based through genome databases ("repositories").
Data on the human genome are special personal data within the meaning of the General Data Protection Regulation (GDPR). This data can never be considered anonymous. To address concerns about sharing human genomic data, genome databases adopt a model of controlled access. Such repositories place this access control in the hands of a so-called "data access committee" (DAC).
Within the legal entity KU Leuven, a DAC has been established under the name "DAC KU Leuven/UZ Leuven." The DAC Desk is staffed by an employee of EC Research UZ Leuven and can be reached at firstname.lastname@example.org. The intention is to exclusively use this DAC (and not establish your own DAC) when referring to a DAC from UZ or KU Leuven.
Organizationally, the DAC is one of the working groups within the DPB (Data Protection Board). This consolidates all assessments related to the reuse of genomic and/or genetic data into one process to ensure uniformity of assessment across all components of KU Leuven. The DAC includes support services from KU Leuven/UZ Leuven and experts with domain knowledge. The composition of the DAC can be found here.
Role of the DAC at KU Leuven (including UZ Leuven)
The DAC plays a substantive and coordinating role, and the DAC Desk supports the DAC administratively. It also serves as a point of contact for researchers in the following situations:
- When KU Leuven researchers submit data to EGA (European Genome-phenome Archive) (situation 1)
- When KU Leuven researchers receive requests from third parties to access their datasets with their own human genetic data (situation 2)
- When KU Leuven researchers request access to external genetic/genomic datasets in repositories (including EGA, NIHdbGAP) (situation 3)
- When KU Leuven researchers want to submit genetic/genomic data to a domain-specific database other than EGA (situation 4)