Abstract
In November 2018 the birth of the first genome-edited human beings was announced by Chinese scientist, He Jiankui. 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) to play a part actively in the governance of biomedical innovation and for research to be bridled by human values.
Highlights
The facts of the case, though they were initially met with incredulity, are more or less established: Dr He Jiankui, a biotechnology entrepreneur and researcher at the Southern University of Science and Technology in Shenzhen, China, recruited a number of couples to a project that led to the birth, in 2018, of the first babies from embryos that had their DNA deliberately modified using the genome editing tool CRISPRCas[91]
Of the many questions that the ‘gene-edited baby case’ provoked, among the most perplexing must be: given the already salient and near-universal opposition to clinical translation of human heritable genome editing (HHGE), how could those involved arrive at a point where they were prepared to carry out these unprecedented procedures? given that Dr He shared his intentions with many scientific peers, how were they able to go through with them despite their widely acknowledged proscription under relevant legal, professional and moral norms? The present paper offers a number of reflections that are relevant to these questions, building on presentations and discussions at the annual meeting of the Global Forum on Bioethics in Research, held in Singapore in November 2019
These reflections touch on: the significance placed on patient and research participant interests and preferences; the perceived policy vacuum in the wake of technological developments in genome editing and the significance of public opinion in this context; the complex motivations and incentives that bear upon ambitious biotechnology entrepreneurialism in contemporary China and elsewhere; the integrity, role and responsibilities of scientists and the international scientific community; the traction of global bioethical norms and missteps in cross-cultural understanding; and wider questions for society about the role of biomedical technologies in the collective response to societal challenges, such as the prevalence of HIV and genetic disease
Summary
McGill University, Montreal, Any reports and responses or comments on the article can be found at the end of the article. This article is included in the GFBR: Genome editing for human benefit: ethics, engagement and governance collection. This version responds to the helpful comments of reviewers on the initial version. Minor amendments have been made to the order in which the authors are listed and the acknowledgements. Any further responses from the reviewers can be found at the end of the article Disclaimer The views expressed in this article are those of the author(s). Publication in Wellcome Open Research does not imply endorsement by Wellcome
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