29.11.2023
The Fritz Thyssen foundation is supporting the organization of an international conference "Towards Genomic Newborn Screening in Germany: Risks, Opportunities, Challenges" at Heidelberg University in March 2024 with a generous grant.
Welcome to NEW_LIVES: "Genomic NEWborn screening programs - Legal Implications, Value, Ethics and Society"
Research project funded by the German Federal Ministry of Education, Technology and Space (BMFTR; 01GP2201A/B)
Latest news
19.10.2023
Researchers in our subprojects on human genetics and pediatrics are publishing contributions in the Bundesgesundheitsblatt. Heiko Brennenstuhl and Christian Schaaf offer an overview of approaches, challenges and opportunities connected with genomic newborn screening. Ulrike Mütze and Stefan Kölker discuss the evaluation and optimization of newborn screening generally by means of structured longitudinal observation studies.
09.10.2023
Our Medical Psychology Subproject presented first results at the International Conference on Behavioral Medicine in Vancouver.
08.09.2023
The International Consortium on Newborn Sequencing (ICoNS) is a global coalition of pilot projects dealing with the implementation of genomic newborn screening in their respective home countries. As a new member of this consortium, NEW_LIVES is looking forward to an exchange of knowledge and perspectives with our partner projects.
21.06.2023
NEW_LIVES introduced itself and presented first results from our project group at the conference "ELSA in the life sciences", which took place on June 20/21, 2023 at the Federal Ministry of Education and Research in Berlin.
29.09.2022
Scientists from Heidelberg University Hospital and the University of Mannheim have received more than one million euro in funding from the German Federal Ministry of Education and Research (BMBF) for their research project "NEW_LIVES". The project group is led by Professor Dr. Dr. Eva Winkler from Heidelberg University Hospital. The Mannheim University legal expert Professor Dr. Ralf Müller-Terpitz investigates the legal aspects of the project.
WELCOME TO NEW_LIVES
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.
Aims of the project
- to formulate acceptable criteria for the selection of target diseases.
- to analyze the requirements of family genetic counseling and informed consent.
- to develop a legal assessment of longer-term patient data storage and its secondary use.
- to recommend best practice guidelines for a potential gNBS program in Germany.
