Symposium Health and Genetic Data: Legal, Governance and Administrative Transformations

This symposium will explore various aspects of the regulation of health and genetic data law in Europe. Topics like the Internet of Things, the EHDS, GDPR, secondary use of data, and accountability and safeguards will be analysed.

The symposium is organized by Santa Slokenberga, Katharina Ó Cathaoir and Mahsa Shabani on behalf of the Nordic Permed Law.

For attendance, please register by sending an email to post@nordicpermedlaw.org by Friday, 16 June 2023. The link will be sent to the participants after the registration.

19 June, 10:00-ca.13:00

10:00-10:10 Welcome & Introduction: Santa Slokenberga

Commentators: Sandra Friberg & Anna-Sara Lind

• 10:10-10:45 Maria Eva Foldes and Stefania Marassi, Deployment of wearable sensor devices in healthcare and at the workplace: tackling the regulatory challenges

• 10:45-11:20 Tomasz Sroka, Internet of Medical Things and standard of data protection

Break

• 11:40-12:15 Enrique Santamaria, The European Health Data Space. A blanket authorisation for health data capture?

• 12:15-12:50 Regina Becker, Davit Chokoshvili, Edward S. Dove, Lawfulness of processing under the GDPR as limiting factor for secondary use of health and genetic data

(Organization: speaker’s presentation max 15 min., discussion with the commentator 10-15 min., Q&A)

20 June, 9:00- ca.12:00

9:00-9:05 Welcome: Mahsa Shabani

Commentator: Ana Nordberg

• 9:05-9:40 Sandra Liede, Juli Mansnérus, Eila El Asry, Access to and sharing of genomic data in the light of upcoming EU regulation

• 9:40-10:15 Jane Reichel, Building trust and ensuring accountability: the EHDS administrative infrastructure for sharing health data

Break

• 10:35-11:10 Michal Koscik, Processing genetic data in line with the principles of data minimisation and storage limitation

(Organization: speaker’s presentation max 15 min., discussion with the commentator 10-15 min., Q&A)

21 June, 9:00- ca. 12:00

9:00-9:05 Welcome: Katharina Ó Cathaoir

Commentator: Kyle McKibbin

• 9:05-9:40 Petra Müllerová, Mandatory regulation of the well-being applications

• 9:40-10:15 Tjaša Petročnik, Power and public interest in secondary uses of electronic health data. Administrative, Regulatory, institutional, and Market implications of the EHDS

Break

• 10:35-11:10 Daniela Spajić The secondary use of electronic health record data in light of patients’ rights

• 11:10-11:45 Mahsa Shabani and Magdalena Kogut, Federated networks as a technical safeguard in data sharing

(Organization: speaker’s presentation max 15 min., discussion with the commentator 10-15 min., Q&A)

Concluding remarks and steps forward: Santa Slokenberga, Katharina Ó Cathaoir and Mahsa Shabani