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Who’s Afraid of the Big Bad Data? Some Critical Reflections on the Proposal to Open Access to Health Data – The Catalan Approach

Abstract

Recently, the regional government of Catalonia (Spain) submitted a proposal to link the health information that is generated in this region. According to the proposal, the whole of health data of users of the health system would be interconnected in an absolutely anonymized and safe way. The aim of the project, called “VISC+” (literally, “I live+”), is to promote and facilitate research and innovation in medicine and health sciences. The paper comments on such a proposal from a critical perspective, bearing in mind its implications with regard to patients’ rights, in particular privacy and data protection.

 

Albert Ruda
– Senior Lecturer in Private Law and Dean at the Faculty of Law of the University of Girona (Catalonia, Spain)

 

  • Background
    Dr. Ruda is a mem¬ber of the Institute of European and Comparative Private Law of the UdG, member of the European Centre of Tort and Insurance Law (ECTIL, Vienna) and the Utrecht Centre for Accountability and Liability Law (UCALL), member of the IUCN World Commission on Environmental Law, elected member of the Council of the European Law Institute (ELI), founding member and coordinator of the ELI Spanish Hub, and member of the Ethics Committee at UdG. He has an extensive experience as a comparative and tort law scholar and has participated in many international projects, among the latest ‘The regulation of risk in private law’ (ed. M. Dyson, Intersentia, forthcoming). At present, he works in two reports, one on Spanish prescription law (Limitation of actions) and another on the Borderlines of tort law, both for the European Group on Tort Law, and a report (in French) within the project on ‘Le transfert des obligations’ (GRERCA, Université Paris I-Université Catholique Louvain), inter alia. Dr. Ruda has been (and still is) the reporter on Spanish tort law at the Annual Conference on European Tort Law for more than 15 years. During the last years, he has also been actively involved in the reform of Catalan private law (including the drafting of the Act on ‘digital will’, passed in 2017 by the Catalan Parliament), as a member of the Commission of Codification of Catalonia.
  • Education
    LLB (Girona, 1997), BA in East Asian Studies (UOC, 2014), BA in Humanities (UOC, 2016), MA in Contemporary China (UOC, 2016), MA in Information Society (UOC, 2016), LLM (IP Law, UNIR, 2016), Dr. iur. with extraordinary prize (UdG, 2006). He is a former Van Calker scholar of the Swiss Institute of Comparative Law (Lausanne, 2001). He has done research stays at the ECTIL (Vienna), the Centre for Liability Law at the Tilburg University, the Faculty of Law of the University of Cambridge and UCALL (Utrecht).
  • Selected Publications
    “Regulating Risk through Private Law – The Spanish approach”, in Matthew Dyson (ed.), Regulating risk through private law, Intersentia, 2017 (in press).
    – “From salamander’s wool to lethal dust. Asbestos liability under Spanish law in light of Heneghan”, European Review of Private Law (in press).
    – “La transmisión y la adquisición de la propiedad en el DCFR” [Transfer and acquisition of property under the DCFR], in Elena Lauroba (ed.), The right of ownership in the construction of European private law (in press).
    – “De la muestra biológica al dato genético y viceversa” [Biological samples and genetic data], in J. Balcells Padullés et al. (eds.), Building a European Digital Space. 12th International Conference on Internet, Law & Politics, Barcelona, Huyghens, 2016, p. 309-324 (with N. Wilson).
    – “Spain”, in Ernst Karner / Barbara C. Steininger (eds.), European Tort Law 2015, Berlin / Boston, 2016, p. 581-614.
    – “Comentario a la Sentencia 15 octubre 2015. Indemnización por daños al derecho al olvido” [The right to be forgotten], Cuadernos Civitas de jurisprudencia civil, 2016, no. 101, p. 289-332.
    – “Blurred borders in Spanish tort and crime”, in Matthew Dyson (ed.), Comparing Tort and Crime. Learning from across and within Legal Systems, Cambridge, Cambridge University Press, 2015 (with L. Bachmaier de Winter and C. Gómez-Jara).
    – “Collective redress in environmental liability cases: the Spanish approach”, in Eva Lein / Duncan Fairgrieve / Marta Otero / Vincent Smith (eds.), Collective redress in Europe. Why and how?, London, British Institute of International and Comparative Law, 2015, p. 327-336.
    – “La réparation du dommage en droit espagnol” [Damage compensation under Spanish law], in Bernard Dubuisson / Patrice Jourdain (dir.), Le dommage et sa réparation dans la responsabilité contractuelle et extracontractuelle. Études de droit comparé, Bruxelles, Bruylant, 2015, p. 1033-1071 (with M. Martin).
    – “La réparation du préjudice écologique en Espagne, l’affaire du Prestige” [Compensation for environmental harm after the Prestige oil spill], VertigO, 2015, no. 22 <https://vertigo.revues.org/16331>