Provenance-Enabled Stewardship of Human Data in the GDPR Era
- 446 Downloads
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.
KeywordsGDPR Human Data Provenance
This work was (partially) funded through the contribution of the Luxembourg Ministry of Higher Education and Research towards the Luxembourg ELIXIR Node.
- 1.Brandizi, M., Melnichuk, O., et al.: Orchestrating differential data access for translational research: a pilot implementation. BMC Med. Inf. Decis. Mak. 17(1), 30:1–30:14 (2017)Google Scholar
- 2.Crosswell, L.C., Thornton, J.M.: ELIXIR: a distributed infrastructure for European biological data. Trends Biotechnol. 30(5), 241–242 (2012). https://doi.org/10.1016/j.tibtech.2012.02.002. http://www.sciencedirect.com/science/article/pii/S0167779912000170CrossRefGoogle Scholar
- 3.Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 (General Data Protection Regulation). Off. J. Eur. Union L119, 1–88 (2016). http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=OJ:L:2016:119:TOC
- 5.Wilkinson, M.D., Dumontier, M., et al.: The FAIR guiding principles for scientific data management and stewardship. Sci. Data 3, 160018 EP (2016). https://doi.org/10.1038/sdata.2016.18