…TIMESLOT: Monday, 01 September 2025 16:00 CEST
…MAIN TITLE: Genomic Newborn Screening as a Gateway to Genomic Medicine: Ethical, Social, Regulatory, and Privacy Issues
…PRESENTERS: Prof. Alessandra Ferlini (Director of the Medical Genetics Unit, the University of Ferrara, Italy)
This webinar will explore how genomic newborn screening is becoming a strategic entry point into genomic medicine. We’ll start by reviewing current genetic and genomic approaches, followed by a clarification of the key differences between diagnosis and screening.
We’ll then focus on types of screening, along with the ethical, privacy, and regulatory challenges they raise, including the critical question of genomic data ownership.
A spotlight will be given to global initiatives in newborn screening, as well as early insights from the Screen4Care project.
The session will close with a dialogue with regulators, opening discussion on the future of policy and practice in this fast-evolving field.
Alessandra Ferlini (MD) is specialized in Medical Genetics (University of Ferrara) and Neurology (University of Bologna), and PhD in genetics (Imperial College, London). She is associate professor in medical genetics, director of the Medical Genetics Unit at the University of Ferrara (Italy), honorary visiting professor at University College of London, member of neuromuscular disease research and care networks, as TREAT-NMD Alliance, European NeuroMuscular Centre.
She coordinated EU research grants on rare diseases (FINGER, BIO-NMD) and was/is full partner in other EU grants, as NMD-CHIP, SIGN, Neuromics. She is PI in innovative trials for muscular dystrophy and involved in gene discovery by omics researches. Her researches are also focused on novel nanodelivery systems for molecular therapies. She is head of the Medical Genetics Unit in Ferrara and lead the all diagnostics tasks (molecular cytogenetics, counselling), providing molecular diagnosis for more than 120 different phenotypes, including 80 genes responsible for neuromuscular diseases. She is also involved in national and local Ethical Committees.