NEW RESEARCH PROJECT EXAMINES GENOMIC NEWBORN SCREENING IN TERMS OF LEGAL IMPLICATIONS, VALUES, ETHICS AND SOCIETY

29.09.2022 | Joint Press Release of the University of Mannheim and Heidelberg University Hospital

Even though most babies are born healthy, some of them suffer from diseases that are not apparent at first sight. These include disorders of the metabolic, hormonal, immune and blood systems, cystic fibrosis and neuromuscular diseases. Newborn screening has been the most successful secondary prevention program in medicine for more than 50 years and is a way to detect rare diseases early and specifically treat them before the first, often life-threatening, signs of disease appear, thus saving lives.

Today, modern genetic and genomic testing makes it possible to identify a variety of other genetic diseases at an early stage. In a project funded over three years (2022-25), a team of researchers from Heidelberg University Hospital (UKHD) and the University of Mannheim will investigate the framework conditions for expanding current screening programs with genetic and genomic analyses. The project is funded by the German Federal Ministry of Education and Research (BMBF) under the funding line for ethical, legal and social issues in the life sciences.

The NEW_LIVES project (Genomic NEWborn screening programs - Legal Implications, Value, Ethics and Society) aims to develop ethical-legal recommendations, including the necessary medical expertise and the views of parents, patients, and others, prior to the possible introduction or testing of a genomic newborn screening program in Germany.

The project group would like to contribute to a legally secure, ethically and socially acceptable as well as medically reasonable design of a future genomic newborn screening program. The BMBF funding amounts to a total of approximately 1.2 million euros for a period of three years. Of this amount, approximately 1 million euros will be allocated to project partners in Heidelberg and approximately 220,000 euros to the University of Mannheim.

Experts from the UKHD and the Heidelberg Medical Faculty of the University of Heidelberg are involved in the project in the fields of medical ethics (Professor Dr. Dr. Eva Winkler, Karla Alex, Dr. Sascha Settegast), medical psychology (Professor Dr. Beate Ditzen, Dr. Julia Mahal), Human Genetics (Professor Dr. Christian Schaaf, Dr. Nicola Dikow) and Pediatrics and Adolescent Medicine/Focus on Neuropediatrics and Metabolic Medicine (Professor Dr. Stefan Kölker, PD Dr. Ulrike Mütze, as well as Professor Dr. Georg F. Hoffmann on the project's advisory board). From the University of Mannheim, Professor Dr. Ralf Müller-Terpitz (Law) is involved.

Scientists from other international universities are also represented in the project's international advisory board. NEW_LIVES cooperates with a partner project in the USA (NC NEXUS) and there are close links to the European Reference Networks for Rare Diseases.

Further information on the Internet

Further information on the collaborative project can be found on the project website (in English, as well as in German on request): https: //www.nct-heidelberg.de/forschung/nct-core-services/nct-epoc/research/new-lives.html.

Information on newborn screening can be found on the homepage of the Dietmar Hopp Metabolic Center at the UKHD: https: //www.klinikum.uni-heidelberg.de/fachliche-zentren/dietmar-hopp-stoffwechselzentrum/neugeborenenscreening.

Contact

Prof. Dr. med. Dr. phil. Eva C. Winkler Head of the Section for Translational Medical Ethics, Heidelberg University Hospital Heisenberg Professor for Translational Medical Ethics, Heidelberg University Managing Director, National Center for Tumor Diseases (NCT) Heidelberg

E-mail: eva.winkler(at)med.uni-heidelberg.de