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. Joint press release by the University of Mannheim and Heidelberg University Hospital.
Press release from 29 September 2022
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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.
The project group aims to contribute to a legally compliant, ethically and socially responsible as well as medically feasible design of a future genomic newborn screening program. The Federal Ministry of Education will fund the project with 1.2 million euros for three years. Approximately 1 million euros will go to the subproject in Heidelberg and approximately 220,000 euros to the subproject at the University of Mannheim.
Researchers of other international universities are members of the project’s international advisory board. NEW_LIVES also partners with a project in the US (NC NEXUS) and has close links to the European Reference Networks on rare diseases.
More information online
For more information on the collaborative project, please refer to the project’s website (available in English but upon request also in German): https://www.nct-heidelberg.de/forschung/nct-core-services/nct-epoc/research/new-lives.html
Information on the newborn screening can be found on the website of the Dietmar Hopp Metabolic Center at Heidelberg University Hospital: https://www.klinikum.uni-heidelberg.de/fachliche-zentren/dietmar-hopp-stoffwechselzentrum/neugeborenenscreening