“Prevention” and Human Gene Editing Governance

AMA Journal of Ethics
Volume 23, Number 1: E1-81 Jan 2021


State of the Art and Science
“Prevention” and Human Gene Editing Governance
Eric T. Juengst, PhD
AMA J Ethics. 2021;23(1):E49-54. doi: 10.1001/amajethics.2021.49.
The Holocaust and the racial hygiene doctrine that helped rationalize it still overshadow contemporary debates about using gene editing for disease prevention. In part, this is because prevention can mean 3 different things, which are often conflated. Phenotypic prevention involves modifying the expression of pathogenic DNA variants to forestall their clinical effects in at-risk patients. Genotypic prevention involves controlling transmission of pathogenic variants between generations to avoid the birth of affected offspring. Preventive strengthening seeks to improve normal human traits to resist disease. These distinctions have been neglected in human gene editing governance discussions and are clarified in this article.