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Towards societal alignment in the governance of human germline genome editing in the Netherlands

Bibliographic Data

ID15735973
AuthorsFreek H van der Weij (Rathenau Instituut), Esther A M Bührman (0009-0000-5502-6791, Vrije Universiteit Amsterdam, corresponding author), Carla van El (0000-0003-2201-2320, Vrije Universiteit Amsterdam), Danielle Arets (Fontys University of Applied Sciences), James Kenneth Timmis (0000-0002-7773-0859, University of Freiburg), Sophie J van Baalen (Netherlands Organisation for Applied Scientific Research)
Year2025
Volume13
Issue1
Publication date2025-12-19
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueJournal of Responsible Innovation (JOURNAL)
Journal identifiersISSN: 2329-9037 • E-ISSN: 2329-9460
PublisherTaylor & Francis (PUBLISHER • GB)
DOI10.1080/23299460.2025.2587982
OpenAlexW4417500588
LanguageEN
References cited27

Although international consensus exists among scientists that clinical application of human germline genome editing (HGGE) should not occur in the near future, the Dutch parliament is considering significantly expanding HGGE research options. Because HGGE policy determines medical practice and potentially the lives of future generations, it is crucial that public values are safeguarded in pertinent decisions. This study applies the governance ecosystem model and anticipatory governance to provide (i) insight into the HGGE governance ecosystem in the Netherlands, and (ii) recommendations to improve societal alignment. We identify gaps in foresight and engagement activities, and a suboptimal integration of public values. We propose interdisciplinary co-creation of future scenarios, recurrent mixed-method studies, public engagement in funding requirements and transparent policy evaluation to improve societal alignment in HGGE governance. The paper demonstrates the synergy of the governance ecosystem model and anticipatory governance when developing recommendations for societal alignment

Corporate governance · Deliberation · Futures studies · Germline · Parliament · Public engagement · Public participation · Public policy · Responsible Research and Innovation · CRISPR and Genetic Engineering · Genetically Modified Organisms Research · Genomics and Rare Diseases

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