18.-19.03.2024 Online.
Internationale Tagung
Towards Genomic Newborn Screening in Germany: Risks, Opportunities, Challenges
Zeit: 18.-19. März 2024
Ort: Online
Das BMBF-geförderte Verbundprojekt NEW_LIVES: Genomic Newborn Screening Programs (https://gnbs.ukhd.de) veranstaltet eine internationale wissenschaftliche Tagung an der Universität Heidelberg. Sie führt internationale Expert*innen aus den Bereichen Ethik, Medizin, Psychologie und Recht sowie Vertreter*innen von Patient*innenverbänden zusammen, um über die Möglichkeiten und Herausforderungen der Einführung eines genomischen Neugeborenen-Screenings in Deutschland zu sprechen. Die Vorträge werden Fragen rund um die Auswahl der Zielkrankheiten, den familiären Aufklärungs- und Einwilligungsprozess sowie die hiermit verbundenen ethischen Aspekte adressieren. Wir danken der Fritz Thyssen Stiftung für ihre großzügige Unterstützung.
Programm:
Day 1 (Monday March 18, 2024)
08:30 – 08:40: Welcome & Introduction, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)
08:40 – 09:40: Sequencing healthy newborns is not yet ready for prime-time, Prof. Dr. Lainie Friedman Ross (University of Rochester)
09:40 – 10:40: Strategies to reduce uncertainty (and harm) caused by recent and future NBS programmes, Prof. Dr. James Bonham (Sheffield Children’s NHS Foundation Trust)
11:10 – 11:40: Revising the Wilson-Jungner criteria for (genomic) newborn screening: Lessons from the German NBS program, Dr. Elena Schnabel (Heidelberg University)
11:40 – 12:10: Genome Sequencing Pilot Study: Evaluating feasibility and scalability for genome-wide newborn screening, Dr. Heiko Brennenstuhl (Heidelberg University)
13:30 – 14:30: Genomic newborn screening: Which findings from 20,000 genes should we report? – Some strategic considerations, Prof. Dr. Christian Schaaf, Dr. Nicola Dikow (Heidelberg University)
14:30 – 15:30: How longitudinal observational studies can guide a screening strategy for rare diseases: Implications of genomic screening, Prof. Dr. Stefan Kölker, PD Dr. Ulrike Mütze (Heidelberg University)
16:00 – 17:00: The BabySeq Project: A randomized trial of genomic sequencing in newborns, Prof. Dr. Ingrid Holm (Harvard Medical School, Boston Children’s Hospital)
17:30 – 19:00: Keynote Lecture at Heidelberg Academy of Sciences & Humanities: Newborn Screening, diagnosis, and precision medicine by genome sequencing and AI, Prof. Dr. Stephen Kingsmore (Rady Children’s Hospital)
Day 2 (Tuesday March 19, 2024)
08:30 – 08:40: Welcome & Introduction, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)
08:40 – 09:40: Implementing genomic newborn screening: Challenges in the German legal context, Prof. Dr. Ralf Müller-Terpitz, Hannah Straub (Mannheim University)
09:40 – 10:40: Genomic newborn screening: Consent and privacy related concerns, Prof. Dr. Mahsa Shabani (University of Amsterdam)
11:00 – 11:30: Genomic newborn screening for adult actionable conditions – Why not?!, Karla Alex, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)
11:30 – 12:00: Medicalization risks in genomic newborn screening, Dr. Sascha Settegast (University of Halle-Wittenberg), Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)
13:00 – 14:00: The impact of genomic newborn screening on the family, Prof. Dr. Stacey Pereira (Baylor College of Medicine)
14:00 – 15:00: Psychosocial determinants of familial decision-making in genomic newborn screening, Prof. Dr. Beate Ditzen, Dr. Julia Mahal, Elena Sophia Doll M.Sc., Carlotta Mayer M.Sc. (Heidelberg University)
15:30 – 16:30: Genomic newborn screening: Principles and strategies for parental counselling, Prof. Dr. Maja Hempel, PD Dr. Stefan Bär, Dr. Sebastian Sailer (Heidelberg University)
16:30 – 18:00: Roundtable discussion with patient representatives
Bei Interesse an der Teilnahme bitten wir um eine kurze Voranmeldung per Email: LukasSimeon.Kiefer@med.uni-heidelberg.de
Die Veranstaltung ist kostenlos