Towards Genomic Newborn Screening in Germany: Risks, Opportunities, Challenges

The BMBF-funded collaborative project NEW_LIVES: Genomic Newborn Screening Programs (https://gnbs.ukhd.de) is organizing an international conference “Towards Genomic Newborn Screening in Germany: Risks, Opportunities, Challenges” at Heidelberg University on March 18/19, 2024. The conference will bring together international experts from the fields of ethics, medicine, psychology and law as well as representatives of patient associations to discuss the opportunities and challenges of introducing genomic newborn screening in Germany. Talks will address questions surrounding the selection of target diseases, the requirements of informed consent and family counselling, and the associated ethical aspects. For a conference program please see below. We would like to thank the Fritz Thyssen Foundation for their generous support.

 The talks will be streamed online. If you are interested in listening in, please register in advance by email: [email protected]

CONFERENCE PROGRAM

Day 1 (Monday March 18, 2024) 

08:30 - 08:40 CET: Welcome & Introduction, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)

08:40 – 09:40 CET: Sequencing healthy newborns is not yet ready for prime-time, Prof. Dr. Lainie Friedman Ross (University of Rochester)

09:40 – 10:40 CET: 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 CET: Revising the Wilson-Jungner criteria for (genomic) newborn screening: Lessons from the German NBS program, Dr. Elena Schnabel (Heidelberg University)

11:40 – 12:10 CET: Genome Sequencing Pilot Study: Evaluating feasibility and scalability for genome-wide newborn screening, Dr. Heiko Brennenstuhl (Heidelberg University)

13:30 – 14:30 CET: 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 CET: 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 CET: 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 CET: 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 CET: Welcome & Introduction, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)

08:40 – 09:40 CET: Implementing genomic newborn screening: Challenges in the German legal context, Prof. Dr. Ralf Müller-Terpitz, Hannah Straub (Mannheim University)

09:40 – 10:40 CET: Genomic newborn screening: Consent and privacy related concerns, Prof. Dr. Mahsa Shabani (University of Amsterdam)

11:00 – 11:30 CET: Genomic newborn screening for adult actionable conditions – Why not?!, Karla Alex, Prof. Dr. Dr. Eva C. Winkler (Heidelberg University)

11:30 – 12:00 CET: 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 CET: The impact of genomic newborn screening on the family, Prof. Dr. Stacey Pereira (Baylor College of Medicine)

14:00 – 15:00 CET: 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 CET: 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 CET: Roundtable discussion with patient representatives