NEW_LIVES: Genomic… Talks and…

Talks from the NEW_LIVES online lecture series

  • 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

  • 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 (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.
  • 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. Available: https://www.klinikum.uni-heidelberg.de/new-lives-genomic-newborn-screening-programs#layer=/new-lives-genomic-newborn-screening-programs/21062023-new-lives-auf-bmbf-tagung-elsa-in-den-lebenswissenschaften-in-berlin.
  • 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.
  • 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.: Genomisches Neugeborenen-Screening (gNBS): Ist mehr Wissen immer besser? – Ethische Sichtweisen. InterdisciPlenary, lecture series by Studienstiftung, Heidelberg; June 2023.Upcoming:
  • Alex K.; Neth, L.; Settegast S.; Winkler E. C.: Das moralische Recht auf genomisches Nichtwissen Neugeborener – Begründung, Konzeptualisierung, Implikationen/The moral right to genomic ignorance of newborns – foundations, conceptualization, implications (Poster). Annual Conference 2024 of the German Academy of Ethics in Medicine, Tübingen; September 2024.
  • 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.
  • 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.
  • 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.

Medical Psychology

  • 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
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