Data protection, scientific research, and the role of information

Rossana Ducato is supported by the Innoviris research grant 2016-BB2B-9. The Author wishes to thank Fabrizio Esposito for the useful comments on an earlier version of this paper. The usual disclaimer about the maternity of the mistakes applies.Peer reviewedPublisher PD

Why Harmonised Standards Should be Open

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Editorial Deiurisprudentia picturata : brief notes on law and visualisation

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Algorithmic Discrimination : A Blueprint for a Legal Analysis

This paper is co-funded by the Erasmus+ Programme of the European Union. The paper reflects the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.Peer reviewedPublisher PD

Ensuring text and data mining : remaining issues with the EU copyright exceptions and possible ways out

This article updates and expands the work presented in A. Strowel and R. Ducato, “Artificial intelligence and text and data mining: a copyright carol” in E. Rosati (ed.), Handbook of EU Copyright Law, Routledge, forthcoming 2021. A sincere thanks to Roberto Caso and Ula Furgal for the constructive discussion on an early draft of this article. The authors have jointly conceived the paper and share the views expressed therein. Nonetheless, while Section 4 is attributable to Alain Strowel, Section 3 is specifically attributable to Rossana Ducato. Both authors equally contributed to the drafting of the remaining sections.Peer reviewedPublisher PD

Legal Design Perspectives : Theoretical and Practical Insights from the Field

This publication and its release in gold open access has been made possible thanks to the support of the Erasmus+ Jean Monnet Module grant 599987-EPP-1-2018-1-BE-EPPJMO-MODULE for the course “European IT Law by Design”. The European Commission’s support for the production of this publication does not constitute an endorsement of the contents, which reflect the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.Publisher PD

“Lost in Legislation”: il diritto multilivello delle biobanche di ricerca nel sistema delle fonti del diritto (convenzioni internazionali, leggi europee, nazionali e regionali, softlaw) = “Lost in legislation”: the Multilevel Governance of Research Biobanks and the Sources of Law (International Conventions, European, National and Regional legislations, Softlaw)

La doppia elica del DNA racchiude al suo interno la chiave di accesso per la comprensione di malattie ritenute fino ad oggi incurabili. Le sue componenti rappresentano, infatti, una straordinaria fonte di informazioni rilevante dal punto di vista scientifico e di riflesso anche economico. Eppure, le speranze della scienza e delle medicina personalizzata non sono unicamente riposte nel cosiddetto codice della vita. I progressi della ricerca biomedica, raggiunti negli ultimi anni, sono riconducibili sia agli sviluppi della biologia molecolare, che ha permesso l’analisi massiccia dei dati genetici, sia alla possibilità di disporre di una massa critica di campioni biologici, raccolti, annotati e conservati secondo standard di elevata qualità. Da qui, la necessità di creare strumenti di lavoro e strutture come le biobanche, capaci di collezionare in maniera sistematica, organizzata e professionale materiale biologico di origine umana. Il termine biobanca conosce diverse declinazioni all’interno del panorama scientifico, potendosi esse distinguere a seconda del tipo di materiale che conservano e dello scopo per cui sono state istituite. Di fronte a questo composito scenario, la disciplina giuridica delle biobanche di ricerca appare altrettanto articolata. Manca ancora una definizione condivisa di biobanca e nel silenzio del legislatore prolificano le guidelines ed altri strumenti non vincolanti. Il ruolo dell’interprete, in un simile frangente, è pertanto quello di ricomporre le tessere di questo variegato mosaico, applicando alla disciplina giuridica della biobanca quella regolamentazione, contenuta in altri atti, che può interessarla sotto alcuni profili. Dall’analisi del panorama normativo internazionale, europeo ed italiano emerge forte l’esigenza di creare tassonomie comuni e di predisporre un quadro omogeneo capace di rispondere alle sfide etiche e giuridiche più pressanti sollevate dalle biobanche. Occorre, altresì, guardare con attenzione ai recenti scenari che la regionalizzazione del diritto delle biobanche prospetta a livello italiano. In assenza di un quadro comune di riferimento, lo zelo di alcuni legislatori regionali potrebbe ottenere l’effetto indesiderato di frammentare la disciplina e di creare standard e procedure che ostacolano l’interazione tra i diversi attori del biobanking. Un argomento così complesso non può che essere affrontato a livello multidisciplinare, tenendo conto di tutti i soggetti coinvolti. Se dal punto di vista medico-scientifico è ormai assodata l’importanza del ruolo delle biobanche, dal punto di vista legislativo occorre creare un’adeguata cornice normativa internazionale e nazionale che tuteli sia gli interessi del paziente - predisponendo una disciplina chiara ed equilibrata che regoli le differenti fasi del trattamento del materiale biologico umano “dalla sala operatoria al laboratorio del ricercatore” - sia degli operatori sanitari e dei ricercatori, facendo in modo che questa stessa disciplina sia dotata della flessibilità necessaria per non imbrigliare lo sviluppo scientifico e tecnologico propiziato dalle biobanche. ENGLISH ABSTRACT The DNA's double helix contains the key access to the understanding of diseases that were considered incurable so far. From the scientifical and subsequent economic point of view its components are, in fact, an unique source of relevant information. However, the hopes of science and personalized medicine are not only stored in the so-called code of life. In recent years the progress of biomedical research is attributable both to the development of molecular biology, which led to the massive analysis of genetic data, and to the possibility of having a critical mass of biological samples, collected, annotated and stored according to high quality standards. Hence, there is a need to create working tools and facilities such as biobanks, able to collect in a systematic, organized and professional way human biological materials. The term biobank knows different variations within the scientific scene, since it’s possible to distinguish them depending on the type of collected material and the purpose for which they were established. Mirroring this variegated scenario, the legal framework of research biobanks is equally in search of a systematic order. There is still no agreed definition of the term biobank, while the regulatory gap is naturally driving to the development of nonbinding guidelines. Therefore, the role of the interpreter in such a situation is to reassemble the pieces of this colorful mosaic, applying the legal rules contained in unspecific legislative provisions in order to give the mutch needed regulatory responses which the stakeholders of the biobanking world are waiting at the European level. At the European level one can detect a strong need to create shared taxonomies, and provide a consistent framework capable of responding to the most pressing legal and ethical challenges raised by biobanks. At the national, Italian level, it is also necessary to pay attention to the scenarios proposed by the recent “regionalization” of biobank law. Absent a common frame of reference, the zeal of some regional legislators could get the unintended effect of fragmenting the discipline, creating standards and procedures which risk to hinder the interaction between the different actors of biobanking. Such a complex subject, in fact, can only be considered in a multidisciplinary perspective, taking into account all the actors involved. Thus, if the medical science side has established the important role of biobanks, on the legislative side an appropriate legislative framework is needed. The latter, composed both by international and national legislation, should protect the interests of the patient - providing clear and balanced rules governing the different stages of human biological material treatment “from the operating room to the laboratory of researcher” - of the health professionals and researchers, ensuring that the same discipline is equipped with the necessary flexibility to not harness the development of science and technology favoured by biobanks . Questo paper © Copyright 2010 Rossana Ducato è pubblicato con Creative Commons Attribuzione-Non commerciale-Non opere derivate 2.5 Italia License. Maggiori informazioni circa la licenza all’URL: <http://creativecommons.org/licenses/by-nc-nd/2.5/it/

Customer ratings as a vector for discrimination in employment relations? Pathways and pitfalls for legal remedies

The use of customer ratings to evaluate worker performance is increasingly worrisome because of its widespread use in the gig-economy. As scholars in computer and social sciences denounce, this practice entails the risk of producing discriminatory outcomes, by reproducing biases existing in society. By drawing an analogy with discriminatory practices adopted by an employer to satisfy its customers' preferences, we propose a legal analysis of this phenomenon grounded in EU non-discrimination law. Thus, we first analyse the issues related to the application of non-discrimination law to (alleged) self-employed workers. Then, we address the lack of access for the individual worker to the data regarding customers' ratings. We conclude by arguing that the use of customer ratings should be considered as a suspect criterion, while the current (EU) non-discrimination laws should be modernised through a clearer inclusion of (alleged) self-employed workers.Series: ohne Reih

Biobanche di ricerca tra proprietà, privacy e proprietà intellettuale : un approccio LawTech

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From data subjects to data suspects : challenging e-proctoring systems as a university practice

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