Making sense of it all: Ethical reflections on the conditions surrounding the first genome-edited babies

Abstract

In November 2018 the birth of the first genome-edited human beings was announced. The ensuing ethical controversy, institutional investigations and legal proceedings led to the revision of standards, rules and procedures at many levels. Arguably, however, these developments have not fundamentally changed the conditions or the culture that nourished He Jiankui’s vaulting ambition in the first place and enabled it to find expression. In this paper we explore the clinical, regulatory and societal circumstances of the ‘gene-edited baby’ case, the political, cultural and economic conditions that created a radical and dangerous climate for biotechnology innovation, and the responsibilities of the international research community, many of whose members were apprised of Dr He’s intentions. The aim is not to heap anathemas on the heads of implicated individuals but to draw attention to the need for different communities (researchers, authorities and domestic publics) actively to play a part in the governance of biomedical innovation and for research to be bridled by human values.