SoBigData ++ and LeADS joint Awareness Panel

Recent Perspectives on Dynamic Consent in Research: a Combined Legal and Technical Approach

18th of January 2022, 1:00 – 2.30 PM CEST

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password: WGkgwhYa563 (normally not requested)

Speakers: Roberta Biasotto; Tommaso Crepax; Cristian Lepore; Deborah Mascalzoni Giulia Schneider

Dynamic Consent (DC) uses information technology to enable continuous communication and interactive consent. It allows research participants to change their choices and preferences on participation and receive updated information on the research that is being conducted with their data and samples.

In this awareness panel, we therefore reflect on Dynamic Consent:

  1. From an ethical and legal point of view, particularly on how DC may:
    • Enable an appropriate balance between the protection of participants’ fundamental rights, including their right to data protection under the GDPR, and the promotion of data sharing and research, with particular regards to the case of secondary uses. In this respect the definition of different data protection regimes will be advanced in accordance to the nature of research that are targeted with secondary uses and to the nature of the subjects involved.
    • Empower the research participants with more control over their data within the new European Health Data Space.
    • Be enhanced to address the inequalities entailed by the digital divide.
  2. From the research participant’s point of view, particularly on how DC may help build a transparent trust relationship between participants and researchers.
  3. From a technological point of view, particularly on how DC technically works and the related technical opportunities and challenges

Schedule

13.00 – 13.15 Greetings
Prof. Giovanni Comandé, Lider Lab, Scuola Superiore Sant’Anna

13.15 – 14.15 Roundtable

Dynamic Consent in practice: the Chris Study, Dr . Deborah Mascalzoni, EURAC
Research Center

Participant’s Perspective and Dynamic Consent, Dr . Roberta Biasotto , EURAC Research Center

Dynamic Consent for Responsive Data Governance : a Legality Attentive Analysis, Dr. Tommaso
Crepax, Lider Lab, Scuola Superiore Sant’Anna; Dr. Cristian Lepore, Irit , University Paul Sabatier
Toulouse III

The Possible Interplay Between a « Dynamic » Consent and other Legal Bases for Research in the
GDPR, Dr. Giulia Schneider, Catholic University of Milan

14.15 – 14.30 Final Discussion

Moderator
Prof. Giovanni Comandé, Lider Lab, Scuola Superiore Sant’Anna

Join us on Webex
password: WGkgwhYa563 normally not requested

Contacts: Segreteria Lider Lab
email address: segrliderlab@santannapisa.it
ph. +39 050883533