Day 3: October 17th, 2025

09:00 – 10:30 – Genetic Data : Risk through genetic data

This session on Sharing of Genetic Data for Research will explore the delicate balance between scientific advancement, ethical considerations, and data protection regulations. Genetic data holds immense potential for medical breakthroughs, personalized medicine, and disease prevention, yet its highly sensitive nature raises privacy, consent, and security concerns. Key questions include: How can it be shared responsibly while protecting individuals from misuse or discrimination? The discussion will address regulatory frameworks such as GDPR, EHDS, and national privacy frameworks, as well as the role of biobanks, commercial entities, and open science initiatives. Ultimately, the session will seek to outline best practices for ethical data sharing, ensuring that research benefits society while upholding individual rights and trust in biomedical innovation.

Chair
Veronica MINO
First PRIVACY
BREMEN, BELGIQUE

speaker 1
Erik BOUCHER
CNIL
Paris, France

10:30 – 11:00COFFEE BREAK & NETWORKING

11:00 – 12:30 – Closing Plenary – DPO, Privacy and genetic DATA

Chair
Nathalie POUPAERT
COUNSEL FIELDFISHER
BRUSSEL, BELGIUM

speaker 1
Anastasia NEGROUK
Mydatatrust
Paris, France