Research project funded by the German Federal Ministry of Education, Technology and Space (BMFTR; 01GP2201A/B)
Latest news
17.07.2025
Recommendations of an ethical, legal, social and medical framework for a genomic newborn screening program in Germany: Statement by the NEW_LIVES project group "Genomic NEWborn screening programs - Legal Implications, Value, Ethics and Society" Heidelberg, July 2025
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.
18.12.2024
Stefanie Järkel reports on NEW_LIVES screening criteria in SZ.
16.12.2024
Public NEW_LIVES talk with Prof. Dr. Janbernd Kirschner (Freiburg/SCREEN4CARE).
Abstract: SCREEN4CARE is an Innovative Medicines Initiative project funded by the European Union, aiming to accelerate the diagnosis of rare diseases through two central pillars: genetic newborn screening and digital technologies. The genetic newborn screening seeks to supplement existing newborn screening programs by incorporating advanced genetic technologies. For inclusion in the screening, we selected genetic diseases based on six key criteria: treatability, clinical validity, age of onset, disease severity, penetrance, and genetic feasibility. This selection process involved an automated scoring system followed by expert review. The final set of 245 genes will be presented. Additionally, the concept of screening for a broader set of diseases considered ACTionable will be discussed. The TREATpanel will be tested in approximately 20,000 newborns, contributing to the growing body of evidence for the implementation of next-generation sequencing (NGS) in newborn screening programs.
12.11.2024
NEW_LIVES speaker Eva Winkler presented on "New Ethics for Genomic Newborn Screening?" at the Centre of Genomics and Policy, McGill University's Victor Phillip Dahdaleh Institute of Genomic Medicine. A recording is available online.
11.11.2024
Karla Alex, NEW_LIVES project group (subproject ethics), presented on "Neue Ethik für genomisches Neugeborenen-Screening?/New Ethics for Genomic Newborn Screening?" at the Heidelberg Colloquium for Applied Ethics.
Since 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 Research, Technology and Space, 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 Group at the conference “Towards Genomic Newborn Screening in Germany” in March 2024 at the Internationales Wissenschaftsforum Heidelberg (IWH). Picture: Martin Jungkunz.
