4th EOSC SIESTA webinar. Responsible Data Management: Legal Frameworks and Ethical Standards

Friday Sep 18, 2026, 10:00 AM → 11:30 AM Europe/Madrid

Judith Sainz-Pardo Diaz, Álvaro López García (IFCA)

In this webinar we will explore the fundamental ethical principles and legal frameworks that shape the responsible use of data in scientific research.

The webinar will introduce some of the main ethical perspectives and explain how they influence today's legal and regulatory frameworks. It will also explore the challenges and opportunities related to the management of sensitive data.

Special attention will be given to the new European Health Data Space framework. We will look at how this new legislation can create opportunities for research, innovation and public policy, while also bringing new legal, governance and ethical responsibilities.

No prior legal knowledge is required.

10:00 AM → 10:50 AM What are we speaking about when we speak about ethics?

Ethic requirements has become a common place in scientific projects' requirements. There are several legal and scholar texts that serve as a guideline for the accomplishment of ethical requirements but the foundations of ethical perspectives remain in philosophical treaties.
During this session, we will review the main ethical perspectives, where do they come from, and how they materialise in legal norms, not only in an atomic perspective, as scientific data/activities maybe, but also in the big political structure. No prior legal nor philosophical knowledge is required to attend to the session.

Speaker: Javier de la Cueva (Javier de la Cueva)

10:50 AM → 11:20 AM New Ethical and Legal Opportunities and Challenges in the Secondary Use of Health Data: Data Governance Through the Lens of Regulation (EU) 2025/327 on the Health Data Space.

During this session, we will analyze the impact of the creation of the European Health Data Space. This European Union initiative aims to improve patients’ access to data and generate value from that data for various purposes, such as public policy, innovation, and scientific
research. This new European regulatory framework creates new opportunities, but also obligations and challenges that we must address not only from a legal compliance perspective but also from an ethical standpoint. Drawing on several use cases and practical examples, we will seek to explore and reflect on the potential and impact that our health data can have on healthcare, but especially on scientific research.

Speaker: Laura Centeno Casado (Institute of Philosophy of the Spanish National Research Council (CSIC))