论文信息 - Provenance-Enabled Stewardship of Human Data in the GDPR Era

Provenance-Enabled Stewardship of Human Data in the GDPR Era

Within life-science research the upcoming EU General Data Protection Regulation has a significant operational impact on organisations that use and exchange controlled-access Human Data. One implication of the GDPR is data bookkeeping. In this poster we describe a software tool, the Data Information System (DAISY), designed to record data protection relevant provenance of Human Data held and exchanged by research organisations.

[1] Klaus A. Kuhn,et al. Orchestrating differential data access for translational research: a pilot implementation , 2017, BMC Medical Informatics and Decision Making.

[2] Janet M Thornton,et al. ELIXIR: a distributed infrastructure for European biological data. , 2012, Trends in biotechnology.

[3] Erik Schultes,et al. The FAIR Guiding Principles for scientific data management and stewardship , 2016, Scientific Data.

[4] Arcadi Navarro,et al. The European Genome-phenome Archive of human data consented for biomedical research , 2015, Nature Genetics.

[5] F. Arnaud,et al. From core referencing to data re-use: two French national initiatives to reinforce paleodata stewardship (National Cyber Core Repository and LTER France Retro-Observatory) , 2017 .