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

Wellcome Open Research

article

Qi Chen¹  Yonghui Ma¹  Markus Labude²  G Owen Schaefer²  Vicki Xafis²  Peter Mills³ 

[1] Centre for Bioethics, Medical School, Xiamen University;Centre for Biomedical Ethics, National University of Singapore;Nuffield Council on Bioethics

关键词: He Jiankui;    Human germline genome editing;    CRISPR-Cas9;    HIV;    Gene editing;    Twins/genetics;    Research ethics;    Research governance;   

DOI  :  10.12688/wellcomeopenres.16295.2

学科分类：内科医学

来源: Wellcome

【 摘 要 】

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.

【 授权许可】

CC BY