ETHOS – EThics & law witH and fOr reSearch

In the era of big data, the impact of the information society on research is increasingly evident in every scientific sector both for “hard” and social sciences. The ethical and legal problems in research were central even before the transformation of every scientific investigation into data-intensive research. The growing role of ethics & law for any research determines practical consequences in the design and organization of scientific and technological activities as well as in the submission, presentation, and management of research projects.
Over the years, our team has developed considerable theoretical and practical expertise in investigating the ethical-legal components related to the dignity of the individuals (e.g., for the protection of personal data, or for the risk of discrimination, or for the involvement of vulnerable individuals, informed consent and research policies), their safety (e.g., environmental, security, safety issues), the security and management of information (e.g., profiles related to intellectual property, misuse, dual use, data management plans), the protection and promotion of their intellectual work and creativity (e.g., the application of copyright rules in the digital environment, new trends of collaboration and coauthorship), and the related societal issues concerning access to knowledge and cultural implications (e.g. the safeguard of access to science by disabled and vulnerable users) as essential elements of a scientific proposal and its implementation.

According to Aristotele, ETHOS is one of the three main pillars (together with Pathos and Logos) of the Rhetoric: it means to be credible. Our twofold expertise, in fact, does not only reflect in our scientific outputs (see publications below), but also in the collaboration, drafting, implementation, and management of research projects in the EU and national sphere to make them credible.

Research expertise currently refer to:

  • Data protection
  • Ethics issues arising from the involvement of human subjects in scientific research
  • Volunteers participation in social and medical research
  • Research misuse
  • Environment, safety
  • Dual use
  • IP & Research Data Management
  • Copyright law
  • E-lending
  • Open access.

Our contribution
We address the current ethical legal challenges “by design”, combining regulation, standardization, and compliance activities tailored to the main purposes of a given research.

Please find here our demo for data management in data-driven research, developed in the framework of Valkyries Project https://www.valkyries-h2020.eu/Demo.html

Coordinator
Denise Amram

ONGOING PROJECTS

  • SOBIGDATA++ – (EU grant agreement No 871042;2020-2023; eu 9.997.172,50), coordinated by CNR, Pisa. SOBIGDATA++ strives to deliver a distributed, PanEuropean, multidisciplinary research infr astructure for big social data analytics, coupled with the consolidation of a cross disciplinary European research community, aimed at using social mining and big data to unde rstand the complexity of our contemporary, globally-interconnected society. Within the WP2, we are responsible of T2.2 “Bottom up Ethics and Legality for Data Science”, contributing to T1.1, T1.3, T1.4 “Responsible data science”.

  • OPT-HEPAC – (“Health Research 2018” call by the Tuscany Region; €1.000.000), coordinated by University of Pisa. OPTIMISATION OF DIAGNOSIS AND CARE PATHWAYS FOR CHRONIC HCV IN TUSCANY is aimed to obtain optimal linkage to care and fast-track treatment initiation for HCV chronic infection patients by establishing common procedures and enhancing collaboration between treatment centres and the others SSRservices. ETHOS team is responsible of T7.3 “Ethical and regulatory assessment” and T7.4 “Privacy and Ethics preserving Training”.

  • 5GSOSIA 5G – enabled SOS Intelligent Assistant (“Health Research 2018” call by the Tuscany Region; eu 647.000), 2020-2023, coordinated by Prof. Luca Valcarenghi. It aims at developing 5G-enabled SOS Intelligent Assistant (SOSIA) to provide an innovative system, improving the emergency response as well as the personalized healthcare delivery to patient. The envisioned system is based on novel device for assisting emergency first rescuer and on a AI-based patient dispatching in the emergency centers. ETHOS team is responsible of regulatory and compliance activities of the developed technology.

  • H2020 RIA ReCreating Europe “Rethinking digital copyright law for a culturally diverse, creative, accessible Europe” project, (EU grant agreement No 870626; 2020-2022; €3.087.928,72) coordinated by Prof. Caterina Sganga. It aims at building up an effective system of sustainable norms for digital copyright. ETHOS team undertakes the T1.4 activities “Data protection, data management plan and ethics compliance”.

  • XAI ERC (Science and technology for the eXplanation of AI decision making) Advanced Grant (2021-2025), coordinated by Dr. Fosca Giannotti, CNR. ETHOS team is involved in data protection and ethics emerging from automated decision making

  • EOSC (European Open Science Cloud) Tender No. 70089/807 “Study about the impact of European and National regulations on data policies related to research” (2020-2021), funded by the KIT – Karlsruher Institut für Technologie, Germany. The tender, coordinated by Caterina Sganga, will provide a comparative study on IP, Data Protection and Security issues emerging in the context of Open Data and Open Science

SCIENTIFIC PUBLICATIONS

  • Denise Amram, Building up the “Accountable Ulysses” model. The impact of GDPR and national implementations, ethics, and health-data research: Comparative remarks, in Computer Law and Security Review, 2020, 37, 1 ff

  • Giovanni Comandé, Regulating algorithms regulation? First ethico-legal principles, problems and opportunities of algorithms, in Tania Cerquitelli, Daniele Quercia, Frank Pasquale (eds) “Towards glass-box datamining for Big and Small Data”, Springer International, 2017, pp. 169- 207

  • Giovanni Comandé, Multilayered (Accountable) Liability for Artificial Intelligence, in Sebastian Lohsse, Reiner Schulze, Dirk Staudenmayer(eds), “Liability for Artificial Intelligence and the Internet of Things”, Nomos Hart, 2018, 165 ff

  • Giovanni Comandé, The Rotting Meat Error: From Galileo to Aristotle in Data Mining?, in European Data Protection Law Review, 2018, 270 ff

  • Giovanni Comandé, Giulia Schneider, Regulatory Challenges of Data Mining Practices: The Case of the Never-ending Lifecycles of ‘Health Data’, in European Data Protection Law Review, 2018, 284 ff

  • Denise Amram, The Role of the GDPR in Designing the European Strategy on Artificial Intelligence: Law-Making Potentialities of a Recurrent Synecdoche, in Opinio Juris in Comparatione, 2020, 1 ff

  • Caterina Sganga, Public E-Lending and the CJEU: Chronicles of a Missed Revolution Foretold, in Opinio Juris in Comparatione, 2016, 2

  • Caterina Sganga, Disability, Right to Culture and Copyright: Which Regulatory Option?, in International Review of Law, Computers & Technology, 2015, vol.29, pp.88-115

  • Caterina Sganga, Right to Culture and Copyright: Participation and Access, in Christopher Geiger (ed), “Research Handbook on Human Rights and Intellectual Property”, Edward Elgar, 2015, pp.560-576

  • Giulia Priora, Copyright law and the promotion of scientific networks: some reflections on the rules on co-authorship in the EU, in Queen Mary Journal of Intellectual Property, 2019, 9(2), pp.217-232

  • Giulia Priora, The Italian way towards Open Access in the scientific sector., currently under peer-review, 2020

TALKS AND EVENTS

  • 8 March 2021 (online) 13:00 – 16:30 MTS

    Workshop on Child-Robot Interaction & Child’s Fundamental Rights Workshop in conjunction with the ACM International Conference of Human-Robot Interaction (HRI2021)

    Denise Amram will present the paper

    J. Albo-Canals, D. Amram, K. Kaesling, J. Martinez Otero, R. G. Pensa et al., Children’s Rights in Online Environments with Social Robots: The use case study of CORP: A Collaborative Online Robotics Platform, HRI, 2021

    Info and registration: https://sites.google.com/view/robotschildrights/home