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Unlocking data: Where is the key?
Author(s) -
C. Sánchez María,
SarríaSantamera Antonio
Publication year - 2019
Publication title -
bioethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.494
H-Index - 55
eISSN - 1467-8519
pISSN - 0269-9702
DOI - 10.1111/bioe.12565
Subject(s) - blueprint , data sharing , data governance , bridge (graph theory) , context (archaeology) , information governance , data management , big data , knowledge management , corporate governance , political science , public relations , engineering ethics , business , information system , data science , computer science , medicine , engineering , management information systems , law , data quality , alternative medicine , metric (unit) , pathology , biology , operating system , paleontology , marketing , data mining , mechanical engineering , finance
Abstract Health‐related data uses and data sharing have been in the spotlight for a while. Since the beginning of the big data era, massive data mining and its inherent possibilities have only increased the debate about what the limits are. Data governance is a relevant aspect addressed in ethics guidelines. In this context, the European project BRIDGE Health ( BR idging Information and Data Generation for Evidence‐based Health policy and research) strove to achieve a comprehensive, integrated and sustainable EU health‐information system. One of the aims of the project was to evaluate the requirements to construct a data‐linkage infrastructure for the secure management of health information. In a blueprint provided for this infrastructure, the topics ethics and the intimately related governance occupied a whole section, where the recent ethics guidelines by the Council for International Organizations of Medical Sciences ( CIOMS ) and the World Medical Association ( WMA ) were referenced. We explore what has changed in the latest versions of the ethics documents adopted by CIOMS and WMA regarding the management of health data and human tissues, the appropriateness of their application in new forms of research and infrastructures as the proposed in the BRIDGE Health project, and whether society should be so concerned about this topic, in the digital era of social exchange.