Past Editions

13:00 – 14:00 – Registration Opening, Lunch & coffee break

14:00 – 15:30 – Opening Plenary – Session 1 – Plenary 1 “Update on regulations” – Salle ORSAY

CNIL : AI Act + Biomedical Research Reference Methodologies EDPB : Updated anonymization guidance OTHER EU Authority

  • In France, CNIL has carried out a public consultation to improve its Reference Methodologies on biomedical research. It has also put in place a team dedicated to the use of Artificial Intelligence, a technology now widely used in healthcare and medical research.
  • At the EU level, the European Data Protection Board is working on new anonymisation and pseudonymisation guidelines
  • Several national authorities are working on updating their regulatory framework to prepare the implementation of the European Health Data Space

Chair

Pierre-Yves Lastic,
EFDPO

Paris, France

Speaker 1

Aurore gaignon

CNIL

Paris, France

Speaker 2

Benedicte Illien

EMA

Amsterdam, Netherland

Speaker 3

Sabine Brosch

Ema, Data analytics

Vienna, Austria

15:30 – 16:00 – Coffee Break

16:00 – 17:30 – Workshops Sessions

16:00 – 17:30 Session 2 – Panel Discussion 1 – International Data Transfers – Salle ORSAY

This panel will be dedicated to exploring the challenges relating to the transfer of health data in general and in particular in the context of scientific research. The session will combine academic and practical considerations on transfer tools and transfer impact assessment.

 

These are the topics or questions we intend to address:

  • The challenges of implementing Standard Contractual Clauses, particularly the famous module 4 processor to Controller and the implications of the recent Dutch DPA decision sanctioning uber.
  • The European Commission has (finally) launched an initiative to update Standard Contractual Clauses (SCCs) for the transfer of personal data to third-country controllers and processors under the GDPR. Was it worth the wait?
  • The Challenges linked to the frame of data transfer within the complex processing chain of some clinical trials.
  • What place for the other data transfer tools and mechanisms such as BCRs ?
  • Reliance on Derogations for scientific research. Is it a viable option ?
  • Clarifying the purpose of the Transfer Impact Assessment and the implementation of supplementary measures for “problematic” countries.

Chair

Winnie Dongbou

MyData-Trust

Brussels, Belgium

Speaker 1

Sonia Cissé

Linklaters LLP

Paris, France

Speaker 2

Adriana Minovic

DPO, ERGOMED

Serbia

Speaker 3

Teodora Lolava-Spinks

U-gent

Gent, Belgium

16:00 – 17:30 Session 3 – Workshop 1 – Tutorial : Certifications and codes of conduct – Salle Vendôme 5-6

This workshop aims to highlight:

  • The practical implications of assessments for compliance with the GDPR and more specific related to privacy and transparency within the different areas of digital health.
  • Existing assessment and certification frameworks with focus on AI and Telemedicine
  • Feasible and criteria relevant for the DPO in order to harmonise the European assessment frameworks

Chair

Christophe MAES

I-HD

Deinze, Belgium

Speaker 1

Yoanni MATSAKIS

Telemedicine, technologies

Boulogne billancourt, France

Speaker 2

Irène schlunder

TMF eV

Berlin, Germany

Speaker 3

NATHAN LEA

DPO, I-HD

Gent, Belgium

16:00 – 17:30 Session 4 – Workshop 2 – Training & Education – Salle Vendôme 1

This panel discussion will discuss the need for specific training and education for DPO and Privacy Officers working in healthcare and biomedical research:

  • What kind of education is needed for DPO and Privacy Officers involved in the processing of personal health data?
  • Should health data specific certification frameworks be developed?
  • How could an European training program for Health Data Protection look like?

Chair

Marie PENOT

UDPO

Kumhausen, Germany

Speaker 1

Barry Moult

Director at BJM IG Privacy Ltd

Long Melford, United Kingdom

Speaker 2

Barbara Tomasi

MydataTrust, DPO

Mons, Belgium

18:00 – 19:30 – Networking Cocktail

9:00 – 10:30 – Session 5 – Plenary 2 – Artifical Intelligence in healthcare and research – Salle ORSAY

This session aims to highlight and discuss the implications and fast changing developments across AI technology and regulations:

  • For healthcare practitioners using assistive and autonomous AI to deliver care and the role of practitioner autonomy and decision-making
  • For patient access to quality care and the autonomy, and the rising anxiety against data bias
  • For researchers to understand regulatory position to reuse data and the risks of working with data analytics, where data bias may exist, and incomplete data may result in AI skewing results.

 

Chair

NATHAN LEA

CEO, I-HD

Gent, Belgium

Speaker 1

Lucrezia, Frillici

Unibo

Bologne, Italie

Speaker 2

Magali FEYS

ACONTRARIO

Belgium

Speaker 3

Gastone Castellani

ITALY

Speaker 4

JULIE POWER

Patient Contact and Policy Officer, Vasculitis Ireland Awareness

Ireland

10:30 – 11:00 – Coffee Break

11:00 – 12:30 Session 8 – Panel Discussion – Standardization of Impact Assessments (Interplay between, DPIA, AI ACT, GDPR and MDR) and a common assessment framework for multiple regulations: CTR, MDR, AIA and GDPR – Salle ORSAY

Data Protection Impact Assessments are a mandatory part of clinical trials and represent a significant workload for project teams. Moreover, they will need frequently to integrate the assessment of the Artificial Intelligence systems used for the processing of personal health data.

  • In this workshop we will show how these assessments can be standardized to reduce workload and improve quality.
  • We will present some of the tools that can be used in this process.
  • The integration of Artificial Intelligence systems assessments will be discussed

Chair

Anne BAHR

Sanofi

Paris, France

Speaker 1

Alessandra CINCOTTI

SANOFI

Paris, France

Speaker 2

Benedicte Ilien

EMA

Amsterdam, Pays-Bas

Speaker 3

Nathalie POUPAERT

Counsuel, Fieldfisher

Brussel, Belgium

11:00 – 12:30 Session 13 – Tuto/WS/PD – Cybersecurity with health apps – Salle Vendôme 5-6

1. Challenge the Existing Paradigm :

Expose the vulnerabilities of current health apps, questioning the very foundation of trust and security in digital health ecosystems.

 

2. Hack the Future :

Explore radical, forward-thinking solutions to protect health data in an era of quantum computing, decentralized networks, and AI-driven health apps.

 

3. Weaponize Data for Good :

Understand how personal health data, when secured, can become a powerful tool for personalized medicine and public health — but in the wrong hands, a weapon against individuals and society.

 

4. Embrace the Chaos: Cyber Resilience:

Prepare for the inevitable breaches and attacks. Learn how to design health apps that not only survive but thrive in a hostile cybersecurity landscape.

 

5. Anarchy in the API:

Dive into the future of API security, anticipating the next wave of threats in interconnected health systems. Discover how a radical overhaul in API design could redefine security standards for all health apps.

 

6.The Punk Manifesto for Health Data Security:

Draft a futuristic, rebellious manifesto on how health apps should evolve to protect privacy, build trust, and create systems that empower patients, even as technological landscapes shift unpredictably.

Chair

Marco Alexandre SAIAS

Ambar Partners

Lisboa, Portugal

Speaker 1

Johne LAVENDY

MANAGING DIRECTOR, CRECO CYBERSECURITY

Paris, France

Speaker 2

Corine PLOURDE

DIRECTRICE PEDAGOGIQUE

Paris, France

13:30 – 15:00 – Workshops Sessions

11:00 – 12:30

Session 10 – Panel Discussion 4 – Anomymization, pseudonymization, synthetic data (Legal) – Salle Vendôme 1

Chair

Pierre-Yves LASTIC

EFDPO

Paris, France

Speaker 1

MAGALI FEYS

ACONTRARIO

GENT, BELGIQUE

Speaker 2

NATHAN LEA

CEO, I-HD

Gent, Belgium

12:30 – 13:30 – Lunch

13:30 – 15:00 – Session 9 – Panel Discussion 3 – Ethics, AI & personal data in health care – Salle ORSAY

Chair

Anastasia Negrouk

MyDataTrust

Brussels, Belgium

Speaker 1

Sofia palmieri

U-Gent

GENT, BELGIQUE

Speaker 2

Marguerite BRAC de la PERRIERE

Tech & Data , Fieldfisher

Paris, France

Speaker 2

Muna, Khogali

I-HD

Gent, Belgium

13:30 – 15:00 Session 11 – Work Shop 4 – Anomymization, pseudonymizatio, synthetic data (Technical) – Salle Vendôme 5-6

In the era of big data, protecting personal information has never been more critical. But how effective are anonymization processes in reality? Are datasets truly anonymous, or just pseudonymous? And most importantly, can anonymized data still provide value to our industry? Join our expert panel to dive into these pressing questions and more. This session promises to spark a lively and thought-provoking debate on the efficiency and utility of anonymization techniques. Don’t miss the chance to engage with leaders who are shaping the future of Data Privacy in our Industry.

Chair

Xavier GOBERT

MYDATATRUST

Brussels, Belgium

Speaker 1

Erik Boucher de Crevecoeur

CNIL

Paris, France

Speaker 2

Oliver Breillacq

Fondateur d’Octopize

Nantes, France

15:00 – 15:30 – Coffee Break12:30 – 13:30 – Lunch

15:30 – 17:00 – Sessions

Session 12 – European Health Data Space – Salle ORSAY

This session aims to highlight the measures within the EHDS Regulation that are expected to impact DPOs, including:

  • issues healthcare organisations will need robust processes to address, particularly regarding patient information, consent and opt-out mechanisms;
  • matters that regional and national health authorities will need to coordinate through healthcare providers and communicate to the public;
  • and considerations that data users, including those involved in clinical research, will need to take into account.

Chair

Dipak Kalra

I-HD

Gent, Belgium

Speaker 1

Milana Trucl

EU PATIENT ASSOCIATION

Amsterdam, Pays-bas

Speaker 2

Déborah Mascalzoni

Associate Professeur

Sweden, Italy

17:00 – 18:15 Session – Oral Communications – Salle ORSAY

17:00-17:15 Sergio Contrino

  • DATA INTEROPERABILITY IN THE VACCELERATE PROJECT: WHY IT MATTERS AND MAKING IT MEANINGFUL Salma Malik PharmB, PhD, Zoi Dorothea Pana, MD, MSc, PhD, Christos D. Argyropoulos , MSci, MSc, PhD, Sophia C. Themistocleous, MSc, Alan Macken ,MSc, Olena Valdenmaiier ,MSc, Frank Scheckenbach ,PhD, Elena Bardach, ,MSC, Andrea Pfeiffer, MS, Katherine Loens, PhD, Jordi Ochando ,PhD, Oliver A. Cornely, MD, PhD , Jacques Demotes , MBA, MD, PhD, Sergio Contrino, ING, Gerd Felder1, BS, MS.

17:15-17:30 Veronica Mino

  • THE SECONDARY USE OF GENETIC DATA: BUILDING UP ON THE OPINION OF THE CONFERENCE OF INDEPENDENT FEDERAL AND STATE DATA PROTECTION SUPERVISORY AUTHORITIES (DSK) V. Miño-Vásquez, PhD

17:30-17:45 Chawla Kartik

  • Navigating Muddy Data-Streams: PETs and EU Data Protection Laws in Secondary Health Data Use Kartik Chawla, Dayana Spagnuelo, Simon Dalmolen

17:45-18:00 Tatiana Revenco

  • Health Data Secondary Use: Navigating the Balance Between Innovation and Data Protection

18:00-18:15 Ashley PITCHER

  • Patient-Mediated approach to sourcing secondary data for research in Europe Ashley B Pitcher, DPhil and Elena Koshkina, PhD

Chair

Dipak Kalra

I-HD

Gent, Belgium

Chair

Pierre-Yves LASTIC

EFDPO

Paris, France

Speaker 1

Sergio Contrino

Head of Data Projects

ECRIN

Paris, France

Speaker 2

Veronica Mino

First PRIVACY

Bremen, GERMANY

Speaker 3

Kartik Chawla

TNO

Eindhoven, Netherlands

Speaker 4

Tatiana Revenco

DPO, Healthcar & Life Sciences

Belgium

Speaker 5

Ashley PITCHER

Data Strategy, Access and Enablement, IQVIA

Copenhagen, Denmark

18:15 – 19:00 Closing Plenary – Session 16 – Transparency – Salle ORSAY

Chair

Dipak Kalra

I-HD

Gent, Belgium

Speaker 1

Anastasia Negrouk

MyDataTrust

Brussels, Belgium

Speaker 2

Pierre-Yves LASTIC

EFDPO

Paris, France

Speaker 2

NATHAN LEA

CEO, I-HD

Gent, Belgium

19:00 – 20:00 – Networking Cocktail followed by Cocktail & Dinner

13:00 – 14:00 – Registration Opening, Lunch & coffee break

14:00 – 14:15 – Congress Opening by Pierre-Yves Lastic – General Secretary of EFDPO and EHDPC Chairman

This session explores the key data protection challenges DPOs must address when AI systems are adopted in healthcare. It covers procurement checkpoints, contractual safeguards, data access from EHRs, cross-border processing, legal bases for data use, security requirements, monitoring and breach management, as well as transparency and explainability for clinicians and patients.

Chair

Pierre-Yves Lastic,
EFDPO

Paris, France

14:15 – 16:00 – Opening Plenary Session : Anonymization and pseudonymization in practice

  • Anonymization and pseudonymization case law. Patrice Navarro (Clifford Chance)
  • The EDPB 2025 pseudonymisation guidance. Giuseppe D’Acquisto (Italian Data Protection Authority)

Speaker 1

Patrice NAVARRO

Clifford Chance

Paris, France

Speaker 2

Giuseppe d’Acquisto

Italian Data Protection Authority

Roma, Italy

15:15 – 16:00 : Panel discussion

« Navigating EDPB Guidance, Health Data Realities, and Case Law »

Chair

Winnie DONGBOU

MyDataTrust

Paris, France

Panelist 1

Gwendal LEGRAND

EDPB

Paris, France

Panelist 2

Patrice NAVARRO

Clifford Chance

Paris, France

Panelist 3

Michael Will

Bavarian Data Protection Authority

Munchen, Germany

Panelist 4

Marta Siemaszko

Global Operations Director, Data Privacy Digital and AI

Warsaw, Poland

Panelist 5

Giuseppe d’Acquisto

Italian Data Protection Authority

Roma, Italy

16:00 – 16:30 – COFFEE BREAK AND NETWORKING

16:30 – 18:00 – Plenary 2 – How will EHDS Health Data Access Bodies anonymise and pseudonymise and synthetize data sets?

The EHDS Regulation extends the legal rights under GDPR to authorise Health Data Access Bodies, appointed by each EU country, with powers to perform anonymisation and pseudinymisation of health data sets in order to make them available for research or other secondary uses. This means that they will be legally permitted to anonymise data sets e.g. from a hospital, that have NOT been de-identified at source. Even if this is permitted under extended GDPR, healthcare providers might need assurance of the capability of HDABs to perform this to a suitable high standard and to give immunity to the healthcare data source for any data breaches or compaints that arise.

Chair

Dipak Kalra

I-HD

Gent, Belgium

Speaker

Daniela will

IAPP – International

Bavières, Germany

Speaker

Petra Wilson

Health Connect Partners

Oxford, United Kingdom

Speaker

Yacine Daquin

Head of Legal

French HDH

Paris, France

Speaker 2

Maud DECRAENE

Responsable /Manager for Pôle LEGATO

Juridique, réglementaire & politique données, DPDP

Legal Affairs, regulatory and data policy, DPO

IHU ICAN

Oxford, United Kingdom

18:00 – 19:00 – ORAL COMMUNICATIONS

18h00 – 18h10 : Navigating Muddy Data-Streams: PETs and EU Data Protection Laws in Secondary Health Data Use

Speaker

Kartik Chawla

TNO

Eindhoven, Netherlands

Speaker

Dayana SPAGNUELO

TNO

Eindhoven, Netherlands

Speaker

Simon DALMOLEN

CJIB

Groningue, NETHERLANDS

18h10 – 18h20 : Recommendations for Assessing Re-Identification Risks in the secondary use of Health Data

Jonathan MAURER

PHD Analytical &

Clinical Chemistry

Neuchaâtel, Suisse

Sabrina OESTERLE

ASU

Arizona, USA

Speaker

Jean-Louis RAISARO

CHUV

Lausanne, Suisse

K Kalt

PHD

Speaker

Michaela EGLI

PHD

Biel, Switzerland

Speaker

Judit KISS BLIND

SPHN

Bale, Suisse

Speaker

Jan ARMIDA

SIB

Lausanne, Suisse

TR Geiger

PHD

18h20 – 18h30 : Health Data as a weapon : Addressing Group-Level Risks in an era of Expanded secondary use

Speaker

Shachi PANDIT

ROCHE

London, UK

18h30 – 18h40 : AI-POWERED Anonymization and pseudonymization to enhance healthcare data Security

Speaker

Baka DIOP

CIO

USA

18H40 – 18h50 : From raw to synthetic : Enabling Privacy Enhancing data sharing in the european health data space

Chair

Dipak Kalra

I-HD

Gent, Belgium

Chair

Pierre-Yves Lastic,
EFDPO

Paris, France

Speaker

Kartik Chawla

TNO

Eindhoven, Netherlands

Speaker

Dayana SPAGNUELO

TNO

Eindhoven, Netherlands

Speaker

Simon DALMOLEN

CJIB

Groningue, NETHERLANDS

Speaker

Shachi PANDIT

ROCHE

London, UK

Jonathan MAURER

PHD Analytical &

Clinical Chemistry

Neuchaâtel, Suisse

Sabrina OESTERLE

ASU

Arizona, USA

Speaker

Jean-Louis RAISARO

CHUV

Lausanne, Suisse

Speaker

Laurewce CARTER

DPO CENTRE

Letchworth, Royaune Uni

Speaker

Michaela EGLI

PHD

Biel, Switzerland

Speaker

Jan ARMIDA

SIB

Lausanne, Suisse

Speaker

Judit KISS BLIND

SPHN

Bale, Suisse

Speaker

Baka DIOP

CIO

USA

19:15 – 20:30 – COCKTAIL AND NETWORKING at CLIFFORD CHANCE Headquater

1 rue d’astorg 75008 Paris

Shuttle BUS leaving at 19H15 in front the musée de la marine.

08:30 – 9:00 Registration Opening & coffee break

09:00 – 10:00 – Plenary 03 – Data Altruism – Secondary use

This session explores the key data protection challenges DPOs must address when AI systems are adopted in healthcare. It covers procurement checkpoints, contractual safeguards, data access from EHRs, cross-border processing, legal bases for data use, security requirements, monitoring and breach management, as well as transparency and explainability for clinicians and patients.

Chair

Kristof van Quathem

Lawyer – Of Counsel

Brussels, BELGIUM

Speaker 1

Maria Christofidou

U-GENT – ECC

Gent, Belgium

Speaker 2

Anne Bahr

R&D Privacy Officer – Sanofi

Paris, France

10:00 – 10:30 – Coffee Break

10:30 – 11:30 – Workshop 1- Oral Communications

10h30-10h40 Blockchain for secure secondary use of health data : Legal and regulatory framework analysis

C. Gauthier-Maxence, PhD – CNRS, PSE; C. Milcent, Pr & Researcher– CNRS, PSE

 

10h40-10h50 Horizon Scanning : Changes to secondary uses of health data in the eu and uk

LW Carter, PhD, DPO

 

10h50 – 11h00 Patient-mediated approach to sourcing secondary data for research in europe

Authors: AB Pitcher, DPhil and E Koshkina, PhD

 

11h00 – 11h10 : Can the data Protection officer also serve as AI officer

Natahlie Poupaert

 

11h10 – 11h20 : Nationally harmonized contractual framework for the secondary use of health data in mutli-center projects in swizerland

J Kiss Blinda, M Egli, PhDa, J Maurer, PhD a

Chair

Dipak Kalra

I-HD

Gent, Belgium

Chair

Pierre-Yves Lastic

General Secretary of EFDPO and EHDPC Chairman

Paris, France

Speaker 1

Céline GAUTHIER-MAXENCE

PHD Digital Law

Paris, FRANCE

Speaker 2

Carine MILCENT

CNRS

Paris, France

Speaker 3

Nathalie POUPAERT

Counsuel, Fieldfisher

Brussel, Belgium

Speaker 4

Mélanie EGLI

PHD

United Kingdom

Speaker 5

Jonathan MAURER

PHD Analytical &

Clinical Chemistry

Neuchaâtel, Suisse

Speaker 6

Laurewce CARTER

DPO CENTRE

Letchworth, Royaune Uni

10:30 – 11:30 – Health research data and international transfers by DPA

Chair

Rafal Yeisen

Stavanger Hospital

Stavanger, Norvège

Speaker 1

Anna Kristin Ulfarsdottir

Norwegian Data Protection

Authority

Speaker 2

Michael Will

Bavarian Data Protection Authority

Munchen, Germany

Speaker 3

MD, Ahmed Alhatlan

Leader, Board Member, Digital Transformation, Healthcare expert, CPHIMS, CHIM, Casemix, International Data Governance, Public Health.

11:40 – 12:40 – Workshop 3 – GDPR compliance through certification and codes of conduc

Chair

DR Sebastien Ziegler

Chairman of Europriv

acy International Board of Experts

Speaker 1

Yoanni MATSAKIS

Telemedicine, technologies

Boulogne billancourt, France

Speaker 2

Christophe MAES

I-HD

Deinze, Belgium

Speaker 3

Kristof Van Quathem

Lawyer – Of Counsel

Brussel, Belgium

11:40 – 12:40 – Workshop 4 – Innovative clinical trial designs utilising EHR data

Chair

Mats SUNDGREN

I-HD

Gent, BELGIUM

Speaker 1

Felix Nensa

Univ Hospital

Essen, Germany

Speaker 2

Nadir Ammour

Sanofi

Paris, France

Speaker 3

Sara Burge

Cambridge University Hospital

Cambridge, UK

12:40 – 14:00 – Lunch Break

14:00 – 15:00 – Workshop 5 – How to Apply GDPR in Practice: Two Casse-Tête Case Studies

  • Hands-on experience with two real-life case studies.
  • Collaborative development of GDPR compliance strategies.
  • Practical application of data protection principles in real-world scenarios.

Chair

Anastasia Negrouk

MyDataTrust

Brussels, Belgium

14:00 – 15:00 – Workshop 6 – Implementation of a uniform DPIA

Chair

NATHAN LEA

CEO, I-HD

Brussels, Belgium

Speaker 1

Peter Singleton

I-HD

UK

Speaker 2

Jan Willem BOITEN

Senior Program Manager

Lygature NL

Nimègue, Gueldre, Netherlands

Speaker 3

Guillaume Coquette

Data Protection Manager

My Data Trust

Paris, France

Speaker 4

Falk Bohm

Vice President, Chief Privacy Officer, Global

Hamburg, Germany

15:00 – 15:30 COFFEE BREAK

15:30 – 16:30 – Workshop 7 – Data Protection in Telemedicine

Speaker

Daniela will

IAPP – International

Bavières, Germany

Speaker

Doris Martinell

General Counsel

Teladoc Health

Barcelona, Spain

15:30 – 16:30 – Workshop 8 – Synthetic Data for Data Protection Officers (DPOs): Understanding Risks, Benefits, and Innovations

Chair

NATHAN LEA

CEO, I-HD

Gent, Belgium

Speaker

Dr JEAN LOUIS FRAYSSE

Silica

Co-fondateur de BOTdesign; CO-Président de SILICA; Vice-Président SoFia Santé

Nice, France

Speaker

Winnie Dongbou Wamba

Senior Data Protection Lawyer & DPO Certified

MyDataTrust

Mons, Belgium

16:45 – 18:00 Plenary 4 – Adopting AI systems within a healthcare organisation

Chair

Dipak Kalra

I-HD

Gent, Belgium

Speaker 1

Adriana Minovic

Group Director of Data Protection (DPO) and AI Compliance

Belgrade, Serbia

Speaker 2

Sofia PALMIERI

Healthcare AI policy

Compliancy officer of ihD and Post-Doctoral Fellow in Medicine, Artificial Intelligence, and the Law at the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School

Speaker 3

Tom Goffin

Professor of Health Law, Ghent University

Lubbeek,

Flemish Region, Belgium

16:45 – 18:00 Plenary 4 – Adopting AI systems within a healthcare organisation

20:30 – 22:00 – DINER at ANDIA

08:30 – 9:00 Registration Opening & coffee break

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, GERMANY

Speaker 1

Erik Boucher de Crevecoeur

CNIL

Paris, France

Speaker 2

Yvan Malgorn

Retired Colonel of Gendarmerie

Lille, France

Speaker 3

Tania Palmariellodiviney

Data protection Officer

UK

10:30 – 11:00 – COFFEE BREAK & NETWORKING

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

Chair

Nathalie POUPAERT

Counsuel, Fieldfisher

Brussel, Belgium

Speaker 1

Anastasia Negrouk

MyDataTrust

Brussels, Belgium

Speaker 2

Peter Blenkinsop

Partner at Faegre Drinker Biddle & Reath LLP

Washington DC, USA

Speaker 4

Xiao Liu

EORTC

Woluwe-Saint-Lambert, Belgium

Speaker 3

Sarah Sandre

PhD

Business developer – Réferente juridique et partenariats

Domaine Relation Utilisateurs et Pilotage Projet

Pôle Innovation & Données

Direction des Services Numériques

Campus Picpus – APHP

Paris, France

12:30 – 13:00 – END OF CONGRESS & COFFEE BREAK

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