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  • Managing the legal, regulatory & ethical implications of sharing and using data

Logo - Precision Medicine Forum.

Date: 13th January

Time: 10:00 CET

  • Determining the extent to which current GDPR and other data regulations are sufficient to cover the use of patient data: 

    • how does specific provision for scientific research within General Data Protection Regulation (GDPR) differ across European countries

    • what frameworks, principles and norms have so far been developed to ensure an ethical approach to data sharing in health research?

    • what additional data governance requirements might be needed?

  • Addressing ethical concerns with regards to patient privacy and confidentiality and ensuring any potential risks are transparent to all concerned - to what extent is anonymisation whilst allowing effective use of patient data achievable?

  • Managing the balance between patient privacy rights and the benefits of data-sharing

    • understanding patients’ expectations of research and the societal benefits and value from it 

    • how do we generate and maintain patient trust with regards to their personal information?

  • Exploring the current and potential uses of AI and digital technologies for healthcare data and the implications of this:

    • legal and regulatory compliance

    • patient trust & engagement



Dr Deborah Mascalzoni, Research Group Leader, Institute for Biomedicine, EURAC; Senior Researcher, Centre for Research Ethics & Bioethics, Uppsala University & Centre for Health, Law & Emerging Technologies (HELEX), University of Oxford


Prof Dr Ana Nordberg, Associate Senior Lecturer, Faculty of Law, Lund University

Dr Marjut Salokannel docent, Founding Partner, Salokannel Research & Consulting SaReCo Oy

Dr Mahsa Shabani, Assistant Professor in Privacy Law, Ghent University

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