Workshop Summary – "Rethinking Cystic Fibrosis Screening Rationales in the Era of Novel Therapies"
International Workshop, 1 July 2026, IEHHS The workshop brought together researchers, clinicians, policy-makers, and patient representatives from Germany, Israel, Switzerland, and the Netherlands to examine how transformative therapies for cystic fibrosis (CF), particularly CFTR modulators, are reshaping the rationale, ethics, and practice of reproductive genetic and newborn screening. Presentations highlighted changing expectations regarding the prenatal, carrier, and newborn screening, drawing on experiences from Germany and Israel. Discussions addressed the evolving aims of screening, national screening policies, and the perspectives of patient organisations, while exploring the social, legal, and ethical implications of screening in an era where CF is increasingly regarded as a manageable condition. Although focusing on a single condition such as CF may initially appear narrow, the workshop demonstrated how CF provides a highly illustrative case through which to examine broader questions about the purpose, justification, and future of genetic screening - in particular population-wide reproductive carrier screening - in the context of rapidly evolving therapeutic options. The workshop provided an important opportunity to reflect on the findings generated during the first two years of the DFG funded project, refine key conceptual and empirical insights, and identify priorities for the next phase of research. Participants emphasised the need to reconsider existing screening frameworks in light of therapeutic advances and highlighted the value of continued interdisciplinary and international collaboration. More information about the project here:
https://www.uni-augsburg.de/en/fakultaet/med/profs/professur-fur-ethik-der-medizin/drittmittelprojekte/CF_Gentests/ (Bilingual website with a language toggle (English/German) at the top of every page.)