jueves, 11 de diciembre de 2025

Gulcin Gumus: Reflections from the ICoNS Conference and the ‘Now’ of Newborn Sequencing

https://www.eurordis.org/gulcin-gumus-reflections-on-icons-conference/ EURORDIS Staff Blog Gulcin Gumus: Reflections from the ICoNS Conference and the ‘Now’ of Newborn Sequencing Our Research & Policy Senior Manager Gulcin Gumus reflects in her latest Staff Blog on the annual ICoNS conference, where discussions on newborn sequencing have moved from purely technical debates to the real-world challenges of implementation, from policy and ethics to whether health systems are ready to adopt these tools responsibly. She highlights how patient voices are becoming more central, with organisations like EURORDIS helping shape how genomic newborn screening is designed, communicated, and governed, including through the Screen4Care project. https://www.iconseq.org/icons-25 Screen4Care’s Dual Approach to Accelerate Rare Disease Diagnosis https://www.screen4care.eu/

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