Charlotte Demoor-Goldschmidt, Claire Berger, Chloé Demoor, Amandine Bertrand, Maelle de Ville de Goyet, Zsuzsanna Jacob, Päivi Lähteenmäki, Jeroen te Dorsthorst, Jelena Roganovic, Aurore Armand
Bulletin du Cancer, 2026, ISSN 0007-4551, https://doi.org/10.1016/j.bulcan.2026.01.025.
Introduction
Across Europe, we face an uncomfortable truth: childhood, adolescent and young adulthood cancer survivors (CAYACS) do not have equal access to the information on their risks for late sequelae they would need to protect their future health. Some receive comprehensive long-term follow-up care; others are entirely lost to the system. Some are fully informed about their treatment history and potential late effects; others discover decades later that no one ever told them they had cancer (https://www.pancare.eu/european-map/).
This is not merely a matter of healthcare organization — it is a question of fundamental rights and ethical responsibility. The E-QuoL (e-Health tools to promote Equity in Quality of Life for childhood to young adulthood cancer patients after treatment/survivors and their families) project convened two ethics working groups bringing together a diverse panel of 27 participants from France, Belgium, Hungary, Germany, Croatia, Bosnia, Slovenia, Spain, the Netherlands, England, and Norway — including survivors, parents, clinicians, researchers, legal experts, and advocates to reflect on these disparities. Our task was to examine how information should be shared ethically and equitably with former pediatric cancer patients, especially in light of persistent disparities between and within countries. What emerged was a clear consensus: transparency is not optional — it is an ethical imperative.