New Research Project Will Analyze Genetic Newborn Screening with Regard to Legal Implications, Values, Ethics, and Society

For their research project “NEW_LIVES”, researchers of Heidelberg University Hospital and the University of Mannheim will receive funding of several millions of euros from the Federal Ministry of Education and Research (BMBF). Professor Dr. Dr. Eva Winkler from Heidelberg University Hospital will lead the collaborative project. Mannheim Law professor Dr. Ralf Müller-Terpitz will analzye the legal aspects of the project.

Most babies are born healthy. However, some babies suffer from diseases which cannot be easily detected, such as metabolic diseases, hormone disorders,  disorders of the blood or immune systems, cystic fibrosis, and neuromuscular diseases. For more than 50 years, the newborn screening has been the most successful program in secondary prevention. The screening makes it possible to detect rare diseases early on and to treat these conditions before the first, often life-threatening symptoms occur and, thus, to save lives.

With today’s genetic and genomic tests, it is possible to identify even more genetic disorders early on. In the project, which will be funded for three years, a team of researchers from Heidelberg University Hospital (UKHD) and the University of Mannheim will analyze the framework conditions for extending the screening in its current form by genetic and genomic analyses. The project will be funded by the Federal Ministry of Education and Research (BMBF) in the funding line for ethical, legal, and social questions in life sciences.

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