“Prevention” and Human Gene Editing Governance

Abstract

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.

Genetic Prevention and the Shadow of the Holocaust

The scientific racism and eugenic delusions that led to the Holocaust are widely eschewed by members of human genetics and genomics communities today.¹ Yet the Holocaust’s long shadow is still evident in public anxiety about our growing ability to control human genes’ expression and transmission. Today, the focus of this anxiety is on the suite of new molecular tools for gene editing that promises to revitalize the enterprise of human...