Changing the regulation of human germline genome editing: what does a truly broad societal debate entail?

Abstract

ABSTRACT How gene editing technologies should be regulated and whether Human Germline Genome Editing (HGGE) should become lawful remain very divisive questions in the legal, political and bioethical fields. At the same time, there is universal agreement that any changes in legislation should be preceded, or accompanied, by broad public deliberation. What does, however, a truly broad societal debate on HGGE regulation actually entail? In this paper, we focus on this issue and articulate a specific understanding of broadness for societal debates on the regulation of technological developments. We then apply it to the context of HGGE and show that a truly broad societal debate on its regulation would require reflecting: (1) on the significance of public preferences regarding genetically-related children for law and policy; and (2) on the potential of HGGE as a tool for global disease burden reduction. We conclude by outlining the implications for policymakers and further research.