The CRISPR babies controversy: Responsibility and regulation in the spotlight
Résumé
Plans and experiments to genetically modify human embryos using CRISPRCas9-based gene editing have triggered a substantial controversy within and beyond the scientific community. This article examines and compares the controversies that unfolded after the announcements made by He Jiankui (in 2018) and by Denis Rebrikov (in 2019) concerning gene editing. He Jiankui represents both the historical reference point and the worst-case scenario for human germline editing. He ended up being confined in several senses of the word: excommunicated by the scientific community, having his laboratory closed and his university contract terminated, and by being sent to prison for 3 years. While Rebrikov has not been fired nor physically detained, his work is criticized along the same lines as He’s experiment, with the term “irresponsible” epitomizing the response from scientific institutions. The article further argues that the CRISPR babies controversy will most likely have a rather chilling effect on public attitudes, values, and preferences concerning human gene editing. Research has shown that the public is often very interested in new technologies and how their use is linked to issues such as justice, trust, equity, and ethics. Engaging the public in the genome-editing debate—as the WHO, the UK Nuffield Council on Bioethics, and others have called for—is thus paramount to better understand the social, ethical, and legal ramifications.