2024-04-04 Prof. Dr. Claudia Schneider (Canterbury/Cambridge): Communicating Scientific Evidence: Effects on Trust and Decision Making
2023-12-11 Prof. Dr. Stefan Kölker (Heidelberg): Towards genomic NBS programmes: What can we learn from current NBS programmes?
2023-11-16 Kelly Ormond (Zürich/Stanford): Newborn Sequencing: Ethics and Patient/Family Implications
Presentations by project members at the "Towards Genomic Newborn Screening in Germany" conference (March 18th-19th 2024 in Heidelberg)
Revising the Wilson-Jungner criteria for (genomic) newborn screening: Lessons from the German NBS program (Elena Schnabel)
Genome Sequencing Pilot Study: Evaluating feasibility and scalability for genome-wide newborn screening (Heiko Brennenstuhl)
Genomic newborn screening: Which findings from 20,000 genes should we report? – Some strategic considerations (Christian Schaaf, Nicola Dikow)
How longitudinal observational studies can guide a screening strategy for rare diseases: Implications for genomic screening (Stefan Kölker, Ulrike Mütze)
Implementing genomic newborn screening: Challenges in the German legal context (Ralf Müller-Terpitz, Hannah Straub)
Genomic newborn screening for adult actionable conditions – Why not?! (Karla Alex, Eva C. Winkler)
Medicalization risks in genomic newborn screening (Sascha Settegast, Eva C. Winkler)
Psychosocial determinants of familial decision-making in genomic newborn screening (Beate Ditzen, Julia Mahal, Elena Sophia Doll, Carlotta Mayer)
Ethics
Alex K.; Neth, L.; Settegast S.; Winkler E. C.: Das moralische Recht auf genomisches Nichtwissen Neugeborener – Begründung, Konzeptualisierung, Implikationen / Newborns’ Moral Right to Genomic Ignorance – Foundations, Conceptualisation, Implications (Poster). Annual Conference 2024 of the German Academy of Ethics in Medicine, Tübingen; September 2024.
Alex K.; Neth L.; Winkler E. C.; Genomic newborn screening for adult actionable conditions – Why not?! Deutscher Kongress für Philosophie (DKPhil); Münster; September 2024.
Alex K.; Winkler E. C.: Interdisciplinarity in bioethics and associated challenges. Annual Conference of the European Association of Centres of Medical Ethics (EACME) “Translating Ethics into Healthcare Practice and Research. Potentials and Risks,” Halle (Saale); September 2024.
Alex K.; Winkler E. C.: Genomic newborn screening for adult actionable conditions – Why not?!. Annual Conference of the European Association of Centres of Medical Ethics (EACME) “Translating Ethics into Healthcare Practice and Research. Potentials and Risks,” Halle (Saale); September 2024.
Neth L.; Alex K. Ethical aspects of genomic newborn screening and the role of higher-order evidence in philosophical and clinical ethics; practical philosophy research seminar (Visiting professor PD Dr. Jean-Moritz Müller), Philosophisches Seminar Tübingen; July 2024.
Alex K.; Neth L.; Winkler E. C.: Ethische Implikationen genomischer Neugeborenenscreening-Programme. Part of the seminar “Medizinethik/Medical Ethics” (taught by Dr. Alexander Christian) for students of medicine, Heinrich-Heine University Düsseldorf; June 2024.
Alex K.; Settegast S.; Winkler E. C.: Genomisches Neugeborenenscreening auf behandelbare Erkrankungen des Erwachsenenalters – Warum nicht?! Spring Conference of the German Academy of Ethics in Medicine, online; April 2024.
Winkler, E; Alex K.: Genomisches Neugeborenenscreening: Ethische Aspekte. Press conference on genomic newborn screening, Heidelberg University Hospital, March 2024.
Settegast S.; Alex K.; Winkler E. C. for the NEW_LIVES project group: NEW_LIVES: Genomic NEWborn screening programs – Legal Implications, Value, Ethics and Society (Poster). BMBF Seminar “ELSA in the life sciences.” Berlin; June 2023.
Settegast S.; Alex K.; Winkler E. C.: Genomisches Neugeborenen-Screening (gNBS): Ist mehr Wissen immer besser? – Ethische Sichtweisen. InterdisciPlenary, lecture series by Studienstiftung, Heidelberg; June 2023.
Alex K.; Settegast S.; Winkler E. C.: Inwiefern spielt Sprache eine Rolle bei ethischen Überlegungen zum genomischen Neugeborenen-Screening? Meeting of working group “Sprache und Ethik” of the German Academy of Ethics in Medicine, online; February 2023.
Medical Psychology
Doll E. S.; Mahal J.; Alex K.; Lerch S.; Winkler E.; Ditzen B.: Focus groups on stakeholders’ needs and preferences regarding a genomic newborn screening program in Germany. 38th Annual Conference of the European Health Psychology Society (EHPS) “Health Psychology for a Sustainable Future,” Cascais; September 2024.
Nora Pashayan, Katie Kerr, Mary Ann Binuya, Elena Sophia Doll, “On utility considerations in risk modeling” im Rahmen der Konferenz „Risk Prediction, Communication and Perception in Health (RiPCoP)”, 13.-15.6.23 in Neuruppin, Brandenburg.
Elena Sophia Doll, Seraina Petra Lerch, Dr. phil. Julia Mahal , Prof. Dr. phil. Beate Ditzen, “Parents' decision-making in the context of pediatric genetic testing: a review and meta synthesis on predictors and consequences” im Rahmen der „International Conference for Behavioral Medicine (ICBM)“, 23.-26.8.23 in Vancouver, Kanada.
Human Genetics
Öffentlicher Abendvortrag Dr. Dikow (TP 4) zusammen mit Dr. Settegast (TP 1) am 13.06.2023 zum Thema „Genomisches Neugeborenen-Screening: Ist mehr Wissen immer besser?“ bei der Studierendengruppe InterdisciPlenary Heidelberg.
Vortrag „Genomic (R)Evolution in Newborn Screening: Tracing the Past, Shaping the Future“ im Rahmen der Veranstaltung GeneTalk der Deutschen Gesellschaft für Humangenetik e.V. (Dr. Brennenstuhl)
Vorträge auf der 49. Jahrestagung der Gesellschaft für Neonatologie und Pädiatrische Intensivmedizin 2023 (GNPI). 16.06.23, Hamburg:
Genomische Neugeborenenscreening Programme international – Aktueller Stand (Dr. Brennenstuhl)
Genomisches Neugeborenenscreening – Ethische und rechtliche Betrachtungen für Deutschland (Dr. Dikow)
Pediatrics
23.11.2023 (RRDA Academy, 4th Asia Pacific Course): Newborn screening 1 (MS/MS): Challenges and limitations of current programmes – Stefan Kölker
11.12.2023 (NEW_LIVES-Vortragsreihe): Towards genomic NBS programmes: What can we learn from current NBS programmes? – Stefan Kölker
23.09.2023 (DGKJ-Jahrestagung 2023, Hamburg): Langzeitbeobachtung bei angeborenen Stoffwechselerkrankungen - Möglichkeiten zur Optimierung des Neugeborenenscreenings? – Ulrike Mütze
18.10.2023 (ISNS-Meeting 2023, Sacramento, CA, USA): Long-term outcome in screened individuals with inherited metabolic diseases. - And they lived happily ever after? – Ulrike Mütze
