TA6 “Privacy & Data Access in Concert”
Data protection regulations have to be considered on many levels of the infrastructure developed by NFDI4Health. Moreover, the health data managed by NFDI4Health belong to the so-called special categories of personal data, the processing of which is subject to particularly strict data protection requirements. But nevertheless, data protection law contains a variety of regulatory approaches of data processing for scientific research purposes, which are all aimed at a privileged treatment of such data processing. They include a relaxation of the principle of purpose limitation, legal exceptions from the general prohibition of data processing, the option of so-called broad consent as well as numerous exceptions regarding the rights of the persons concerned.
Data protection and data security are overarching challenges for all consortia which process personal data and thus synergies can be exploited by close coordination with other consortia (e.g. and GHGA and KonsortSWD). Data protection and data security are also cross-sectional issues within NFDI4Health that have to be observed by all TAs. A main focus of TA6 will therefore lie on ensuring that data protection concerns are adequately addressed on all levels of the consortium. This applies in particular to the work in TA3, TA4 (T4.2, T4.5) and TA5.
Furthermore, TA6 will analyse state-of-the-art organizational structures and technical tools. It will develop concepts and solutions required to implement the use cases and adequately protect the various types of data provided by the local data access points (LAPs) (see T3.5). For this, we will subsequently evaluate and roll out governance structures and technical solutions in close collaboration with the MII, NFDI4MED and other consortia. The use cases will serve as test beds for the design and implementation of solutions, in particular T5.4 concerning record linkage.
Prof. Dr. Ulrich Sax
University Medical Center Göttingen,
Prof. Dr. Benedikt Buchner
Dr. Harald Kusch
Phone: +49 (0)551 3961539