Orchestrating differential data access for translational research: a pilot implementation.
Translational researchers need robust IT solutions to access a range of data types, varying from public data sets to pseudonymised patient information with restricted access, provided on a case by case basis. The reason for this complication is that managing access policies to sensitive human data must consider issues of data confidentiality, identifiability, extent of consent, and data usage agreements. All these ethical, social and legal aspects must be incorporated into a differential management of restricted access to sensitive data.



In this paper we present a pilot system that uses several common open source software components in a novel combination to coordinate access to heterogeneous biomedical data repositories containing open data (open access) as well as sensitive data (restricted access) in the domain of biobanking and biosample research. Our approach is based on a digital identity federation and software to manage resource access entitlements.



Open source software components were assembled and configured in such a way that they allow for different ways of restricted access according to the protection needs of the data. We have tested the resulting pilot infrastructure and assessed its performance, feasibility and reproducibility.



Common open source software components are sufficient to allow for the creation of a secure system for differential access to sensitive data. The implementation of this system is exemplary for researchers facing similar requirements for restricted access data. Here we report experience and lessons learnt of our pilot implementation, which may be useful for similar use cases. Furthermore, we discuss possible extensions for more complex scenarios.
European Molecular Biology Laboratory, European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, CB10 1SD, UK. brandizi@ebi.ac.uk.
Marco
0000-0002-5427-2496
M
Brandizi
European Molecular Biology Laboratory, European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, CB10 1SD, UK.
Olga
O
Melnichuk
Chair of Medical Informatics, Institute of Medical Statistics and Epidemiology, University Medical Center rechts der Isar, Technical University of Munich, Munich, Germany.
Raffael
R
Bild
Chair of Medical Informatics, Institute of Medical Statistics and Epidemiology, University Medical Center rechts der Isar, Technical University of Munich, Munich, Germany.
Florian
F
Kohlmayer
Chair of Medical Informatics, Institute of Medical Statistics and Epidemiology, University Medical Center rechts der Isar, Technical University of Munich, Munich, Germany.
Benedicto
B
Rodriguez-Castro
Chair of Medical Informatics, Institute of Medical Statistics and Epidemiology, University Medical Center rechts der Isar, Technical University of Munich, Munich, Germany.
Helmut
H
Spengler
Chair of Medical Informatics, Institute of Medical Statistics and Epidemiology, University Medical Center rechts der Isar, Technical University of Munich, Munich, Germany.
Klaus A
KA
Kuhn
Heinrich-Heine Universität Düsseldorf, Coordination Centre for Clinical Trials, Düsseldorf, Germany.
Wolfgang
W
Kuchinke
European Clinical Research Infrastructure Network (ECRIN), Düsseldorf, Germany.
Christian
C
Ohmann
CSC - IT Center for Science Ltd, Espoo, Finland.
Timo
T
Mustonen
CSC - IT Center for Science Ltd, Espoo, Finland.
Mikael
M
Linden
CSC - IT Center for Science Ltd, Espoo, Finland.
Tommi
T
Nyrönen
CSC - IT Center for Science Ltd, Espoo, Finland.
Ilkka
I
Lappalainen
European Molecular Biology Laboratory, European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, CB10 1SD, UK.
Alvis
A
Brazma
European Molecular Biology Laboratory, European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, CB10 1SD, UK. ugis@ebi.ac.uk.
Ugis
U
Sarkans
D018070:Biological Specimen Banks / Q000592:standards*; D035843:Biomedical Research / Q000592:standards*; D016494:Computer Security / Q000592:standards*; D066264:Datasets as Topic; D006801:Humans; D010865:Pilot Projects; D057170:Translational Research, Biomedical / Q000592:standards*
Biomedical Data; Clinical Data; Data Access; Health Data Protection; Translational Research