Abstract
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.
| Original language | English |
|---|---|
| Article number | 2587982 |
| Pages (from-to) | 1-20 |
| Number of pages | 20 |
| Journal | Journal of Responsible Innovation |
| Volume | 13 |
| Issue number | 1 |
| Early online date | 19 Dec 2025 |
| DOIs | |
| Publication status | Published - 2026 |
Bibliographical note
Publisher Copyright:© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Funding
This work was supported by the Netherlands Organization for Scientific Research under [grant number NWA.1389.20.075]. Freek van der Weij is part of the research program Ethics of Socially Disruptive Technologies, which is funded through the Gravitation program of the Dutch Ministry of Education, Culture, and Science and the Netherlands Organization for Scientific Research [NWO grant number 024.004.031]. We would like to thank all interviewees for their time to participate in this study. We also thank dr. Rosanne Edelenbosch for her feedback, and two anonymous reviewers for their careful reading and valuable suggestions that significantly helped improve this manuscript. This paper has been written as output of the DNA Dialogues consortium. Discussion with members of this consortium have been helpful for the development of this paper. Their names can be found in the list of consortium members in the appendix.
| Funders | Funder number |
|---|---|
| Ministerie van Onderwijs, Cultuur en Wetenschap | |
| Nederlandse Organisatie voor Wetenschappelijk Onderzoek | 024.004.031, NWA.1389.20.075 |
Keywords
- Human germline genome editing, governance ecosystem, anticipatory governance, responsible innovation, societal alignment