Fondazione Gianni Benzi took part, from 4 to 7 November 2025, in the EP PerMed Implementation School on Personalised Medicine – Data-driven Research and Implementation, held in Zaragoza at the CIBA – Aragon Health Sciences Institute.
The School, organised by the EP PerMed partners with the support of DLR Projektträger, aimed to strengthen the skills needed to integrate personalised medicine into European health systems. The event brought together researchers, healthcare professionals, data analysts, patient representatives and policymakers, both onsite and online.
Over the four days, participants explored all the key steps of the data lifecycle in personalised medicine: from the generation and management of preclinical and clinical data to tools for real-world implementation within health systems. Sessions addressed interoperability, data standards, genomic maturity models, HTA, as well as ethical, legal and social implications.
Our researcher Annalisa Landi joined as a speaker, contributing to the session dedicated to the ethical and regulatory aspects of data sharing. Her presentation, Ethical and Legal Challenges in Personalised Medicine Data Sharing, covered:
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the ethical specificities of personalised medicine (risk of identification, use of genetic/genomic data, involvement of vulnerable populations);
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key principles related to informed consent, including special considerations for minors and vulnerable groups;
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the importance of transparency, governance, and the protection of data subjects’ rights;
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the need to verify the applicable legal frameworks, from the GDPR to national regulations, particularly when data are shared across borders;
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the role of Data Sharing/Access Agreements in ensuring safe, compliant and responsible use of data;
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the Foundation’s experience in developing practical tools for the ethical management of data and sample sharing in biomedical research, especially in paediatrics.
Her contribution highlighted how responsible data sharing is essential to scientific progress in personalised medicine, provided that strong safeguards, clear regulatory structures and continuous engagement with patients and professionals are in place.
The 2025 edition of the EP PerMed Implementation School therefore represented an important opportunity to strengthen international collaboration and to promote a research culture focused on real-world impact within health systems.