Budgets versus Bans: How U.S. Law Restricts Germline Gene Editing

Abstract

In late 2019, He Jiankui, the Chinese scientist who created the world's first gene-edited babies, and two embryologists were sentenced to prison and fined. Thirteen months earlier, when the world first learned about the experiment, He and his colleagues drew swift and nearly uniform international condemnation for prematurely moving to human trials, for the risks they took with the children's health, and for He's secrecy. The organizing committee for the second genome editing summit said the experiment failed to conform with international norms.” In the United States, the legal picture is complex. No doubt the specific experiment He performed would have run afoul of long-standing research regulations due to its problems with informed consent and ethical review. But other laws also affect this kind of work, in particular, a budget rider that for the past four years has been included in federal appropriations legislation.