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

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.尽管科学界已达成国际共识，即人类生殖系基因组编辑（human germline genome editing, HGGE）的临床应用不应在近期开展，但荷兰议会正考虑大幅拓宽该技术的研究范畴。由于人类生殖系基因组编辑政策关乎医疗实践乃至后代的生存福祉，因此在相关决策中维护公众价值至关重要。本研究采用治理生态系统模型与前瞻性治理框架，旨在实现两大目标：其一，剖析荷兰的人类生殖系基因组编辑治理生态系统；其二，提出优化社会契合度的相关建议。本研究指出了当前在前瞻规划与公众参与活动中存在的不足，以及公众价值整合不够完善的问题。为此，本研究提出多项优化举措：开展跨学科协作以共创未来场景、定期开展混合方法研究、将公众参与纳入资助要求，并推行透明化的政策评估，以此提升人类生殖系基因组编辑治理中的社会契合度。本研究同时验证了，在制定社会契合度优化建议的过程中，治理生态系统模型与前瞻性治理框架具有协同增效的作用。