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

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.