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Provenance-Enabled Stewardship of Human Data in the GDPR Era: 7th International Provenance and Annotation Workshop, IPAW 2018, London, UK, July 9-10, 2018, Proceedings
Abstract
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.
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Background
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. Methods
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. ResultsOpen 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. Conclusions
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.
There is an urgent need to improve the infrastructure supporting the reuse of scholarly data. A diverse set of stakeholders—representing academia, industry, funding agencies, and scholarly publishers—have come together to design and jointly endorse a concise and measureable set of principles that we refer to as the FAIR Data Principles. The intent is that these may act as a guideline for those wishing to enhance the reusability of their data holdings. Distinct from peer initiatives that focus on the human scholar, the FAIR Principles put specific emphasis on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals. This Comment is the first formal publication of the FAIR Principles, and includes the rationale behind them, and some exemplar implementations in the community.
The European Genome-phenome Archive (EGA) is a permanent archive that promotes the distribution and sharing of genetic and phenotypic data consented for specific approved uses but not fully open, public distribution. The EGA follows strict protocols for information management, data storage, security and dissemination. Authorized access to the data is managed in partnership with the data-providing organizations. The EGA includes major reference data collections for human genetics research.
The most successful collaborative projects in the scientific panoply are those that provide solutions to problems shared by many worldwide. The ELIXIR project is one such example, its aim being to ensure that European countries are able to respond to the set of grand challenges that they all face. ELIXIR has as its stated mission ‘the construction and operation of a sustainable infrastructure for biological information in Europe to support life science research and its translation to medicine and the environment, the bio-industries and society’.