The concept of accountability in the context of the evolving role of ENISA in data protection, ePrivacy and cybersecurity

2021 ◽  
pp. 246-284
Author(s):  
W. Gregory Voss
Keyword(s):  
2021 ◽  
pp. 107385842110366
Author(s):  
Emilia Giannella ◽  
Valentino Notarangelo ◽  
Caterina Motta ◽  
Giulia Sancesario

Biobanking has emerged as a strategic challenge to promote knowledge on neurological diseases, by the application of translational research. Due to the inaccessibility of the central nervous system, the advent of biobanks, as structure collecting biospecimens and associated data, are essential to turn experimental results into clinical practice. Findings from basic research, omics sciences, and in silico studies, definitely require validation in clinically well-defined cohorts of patients, even more valuable when longitudinal, or including preclinical and asymptomatic individuals. Finally, collecting biological samples requires a great effort to guarantee respect for transparency and protection of sensitive data of patients and donors. Since the European General Data Protection Regulation 2016/679 has been approved, concerns about the use of data in biomedical research have emerged. In this narrative review, we focus on the essential role of biobanking for translational research on neurodegenerative diseases. Moreover, we address considerations for biological samples and data collection, the importance of standardization in the preanalytical phase, data protection (ethical and legal) and the role of donors in improving research in this field.


Author(s):  
Miguel Ángel CABELLOS ESPIÉRREZ

LABURPENA: Lan eremuan bideozaintzaren erabilerak ondorio garrantzitsuak dakartza funtsezko eskubideei dagokienez, esate baterako intimitateari eta datu pertsonalen babesari dagokienez. Hala eta guztiz ere, oraindik ez daukagu araudi zehatz eta espezifikorik kontrol-teknika hori lan eremuan erabiltzeari buruz. Horrek behartuta, errealitate horri araudi-esparru anitz eta generikoa aplikatzeko modua auzitegiek zehaztu behar dute, kontuan hartuta, gainera, Espainiako Konstituzioaren 18.4 artikulua alde horretatik lausoa dela. Konstituzio Auzitegiak, datuen babeserako funtsezko eskubidea aztertzean, datuen titularraren adostasuna eta titular horri eman beharreko informazioa eskubide horretan berebizikoak zirela ezarri zuen; hortik ondorioztatzen da titularraren adostasuna eta hari emandako informazioa mugatuz gero behar bezala justifikatu beharko dela. Hala ere, Konstituzio Auzitegiak, duela gutxiko jurisprudentzian, bere doktrina aldatu du. Aldaketa horrek, lan eremuan, argi eta garbi langileak informazioa jasotzeko duen eskubidea debaluatzea dakar, bere datuetatik zein lortzen ari diren jakiteari dagokionez. RESUMEN: La utilización de la videovigilancia en el ámbito laboral posee importantes implicaciones en relación con derechos fundamentales como los relativos a la intimidad y a la protección de datos personales. Pese a ello, carecemos aún de una normativa detallada y específica en relación con el uso de dicha técnica de control en el ámbito laboral, lo que obliga a que sean los tribunales los que vayan concretando la aplicación de un marco normativo plural y genérico a esa realidad, dada además la vaguedad del art. 18.4 CE. El TC, al analizar el derecho fundamental a la protección de datos, había establecido el carácter central en él del consentimiento del titular de los datos y de la información que debe dársele a éste, de donde se sigue que cualquier limitación del papel de ambos deberá estar debidamente justificada. Sin embargo, en su más reciente jurisprudencia el TC ha realizado un cambio de doctrina que supone, en el ámbito laboral, una clara devaluación del derecho a la información por parte del trabajador en relación con qué datos suyos se están obteniendo. ABSTRACT : T he use of video surveillance systems within the work sphere has major implications for fundamental rights such as privacy and data protection. Nonetheless, we still lack of a detailed and specific regulation regarding the use of that control technology within the work sphere, which obliges courts to define the application of a plural and generic normative framework to that issue, given the vagueness of art. 18.4 of the Constitution. The Constitutional Court, when analyzing the fundamental right to data protection, had settled the centralityof the consent of the data rightholder and of the information to be provided to the latter, and from this it followed that any restriction on the role of both rights should be duly justified. However, in its most recent case law the Constitutional Court has changed its doctrine which means, within the work sphere, a clear devaluation of the right of information by the employee regarding the obtained data of him/her.


Author(s):  
Ian J. Lloyd

This chapter first describes the rationale for the establishment of supervisory agencies for data protection in EU States. This marks a significant divergence in approach from other countries such as the United States and continues to constitute a barrier to harmonisation in the data protection field. Specific attention is paid to the status and role of the United Kingdom’s Information Commissioner and the investigative and enforcement powers conferred on the Commissioner. The evolving nature of the requirements of registration of data controllers is considered as is the role of the Register of Data Controllers. Attention is given also to the appeal mechanisms established under the Act and to the role of the First Tier Tribunal.


2014 ◽  
Vol 21 (3) ◽  
pp. 271-296 ◽  
Author(s):  
Nayha Sethi

This article addresses the role of pharmacoepidemiology in patient safety and the crucial role of data sharing in ensuring that such activities occur. Against the backdrop of proposed reforms of European data protection legislation, it considers whether the current legislative landscape adequately facilitates this essential data sharing. It is argued that rather than maximising and promoting the benefits of such activities by facilitating data sharing, current and proposed legislative landscapes hamper these vital activities. The article posits that current and proposed data protection approaches to pharmacoepidemiology — and more broadly, re-uses of data — should be reoriented towards enabling these important safety enhancing activities. Two potential solutions are offered: 1) a dedicated working party on data reuse for health research and 2) the introduction of new, dedicated legislation.


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