18.07.2025
On July 18, 2025, NEW_LIVES will host a symposium at Heidelberg University, presenting the multi-dimensional framework for an appropriate genomic newborn screening program from an ethical, legal and social (ELSI) as well as medical perspective developed in the project group.
Read Article
03.06.2025
In Zukunft könnten werdende Eltern vor der Frage stehen, ob sie das ganze Erbgut ihres Babys untersuchen lassen wollen. So könnten viele behandelbare Zielkrankheiten frühzeitig identifiziert werden, die durch das heutige Neugeborenenscreening nicht erfassbar sind. Das klingt vielversprechend, wirft aber zentrale medizinische, ethische und rechtliche Fragen auf. Welche Krankheiten sollen überhaupt erfasst werden? Was heißt „Handlungsrelevanz“? Und wie gehen wir mit Informationen um, die nicht das Kind, sondern die Eltern betreffen?
Diese und weitere Fragen diskutieren Prof. Dr. Georg Friedrich Hoffmann, Kinder- und Jugendmedizin, Prof. Dr. Dr. Eva Winkler, Medizinethik, Prof. Dr. Ralf Müller-Terpitz, Rechtswissenschaft, Universität Mannheim und Prof. Dr. Christian Schaaf, Humangenetik.
Read ArticleSince the late 1960s, virtually all newborns in Germany have been standardly tested for a number of rare but severe diseases, since a timely diagnosis and treatment of these diseases significantly improves their prognosis. Thousands of young patients have profited from Germany’s newborn screening program. In part, its success is also due to the program’s continued development, which led to the inclusion of further target diseases and new methods of analysis. The maturation of new genomic technologies now offers the opportunity to expand newborn screening once again and in particularly significant ways. At the same time, such an expansion would come with considerable medical, ethical, legal, and social challenges.
Is genomic newborn screening (gNBS) a reasonable option for Germany? How can we realize the significant health benefits offered by the new technologies and at the same time minimize potential risks for everyone involved? Our interdisciplinary research group “NEW_LIVES: Genomic NEWborn Screening Programs – Legal Implications, Value, Ethics and Society” aims to address these questions. Generously funded by the German Federal Ministry of Education and Research, NEW_LIVES joins researchers from five different disciplines at Heidelberg University Hospital, the Heidelberg University Faculty of Medicine, and the University of Mannheim and is carried out in close consultation with representatives of patient organizations.
On this website, we would like to inform you about the opportunities and challenges of a potential genomic newborn screening program and the research conducted in our five subprojects.
NEW_LIVES Project Partners at the conference “Towards Genomic Newborn Screening in Germany” in March 2024 at the Internationales Wissenschaftsforum Heidelberg (IWH).
