Unlocking data: Where is the key?
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....
| Publicado en: | Bioethics Vol. 33; no. 3; pp. 367 - 377 |
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| Autores principales: | , |
| Formato: | Artículo |
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Wiley-Blackwell
Mar2019
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=141425682&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 141425682 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 02699702 6PJ jtl: Bioethics issn: 02699702 maglogo: Y pubinfo: dt: Mar2019 vid: 33 iid: 3 pid: 480 pub: Wiley-Blackwell artinfo: ui: 141425682 10.1111/bioe.12565 ppf: 367 ppct: 10 formats: tig: atl: Unlocking data: Where is the key? aug: au: C. Sánchez, María Sarría‐Santamera, Antonio affil: Institute of Health Carlos III, Madrid Spain keyword: biobanks consent data repositories data‐linkage infrastructure governance research ethics biobanks consent data repositories data‐linkage infrastructure governance research ethics ab: 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 (BRidging 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. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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