Abstract

In the fall of 2018 Jiankui He shocked the international community with the following announcement: two female babies, “Lulu” and “Nana,” whose germlines had been modified by the cutting edge, yet profoundly unsafe CRISPR-Cas9 technology had been born. This event galvanized policy makers and scientists to advocate for more explicit and firm regulation of human germline gene editing. Recent policy proposals attempt to integrate safety considerations and public input to identify specific types of diseases that may be safe targets for human GGE. This paper argues these policy proposals are inadequate in different ways. While Sarkar intends to incorporate input from the disability community for the purpose of deciding the value of human GGE, I argue that his strategy for doing so is inadequate. I’ll argue that an iterative, deliberative process is a more appropriate framework for allowing the disability community to inform policy on human GGE. Further policy proposals have been framed in terms of monogenetic or single-gene diseases. I argue that this way of conceptualizing disease is not what matters for deciding which disorders are viable candidates for human GGE. Instead, what matters is that the disease in question must have genes that have a high degree of causal control with respect to the disease and alternative nucleic acid sequences variants that are likely to produce traits deemed desirable must be identified. Previous policy proposals leave unspecified. What conditions must be met for satisfying condition should not be left to individual scientists to decide for themselves. The present proposal offers some guidance on this issue.