Original article by Lisa Rosenbaum, M.D. by NEJM
The news that Chinese scientist He Jiankui had attempted to edit the CCR5 gene in the germline of two embryos led to a swift backlash in the scientific community. But the rogue experiment may inspire broader discussion about the fraught ethical issues involved.
On the day after Thanksgiving 2018, Jennifer Doudna, a biochemist at the University of California, Berkeley, whose research on bacterial immune systems led to the gene-editing technique known as CRISPR (for Clustered Regularly Interspaced Short Palindromic Repeats),1 received a startling email from the Chinese scientist He Jiankui. “Babies born,” read the subject line. Though Doudna was previously unaware that He had been working to create the world’s first “CRISPR babies,” she had long worried that CRISPR-related research was leaping ahead of the consensus necessary to support its ethical use. In her memoir about gene editing,2 Doudna describes a nightmare in which she is summoned by a pig-faced Hitler to describe the potential implications of the “amazing technology” she developed. But it’s the preoccupation of Doudna’s waking life, “that through a series of reckless, poorly conceived experiments, scientists would prematurely implement CRISPR without proper oversight or consideration of the risks,” that has proven more prescient.
Indeed, as the details of He’s experiment emerged, it quickly became impossible to separate the implications of the science from the ethics violations that had enabled it. He apparently attempted to edit the CCR5 gene in the germlines of two embryos. CCR5 is thought to be the major receptor through which HIV gains access to T cells, and He aimed to confer lifetime resistance to HIV. The magnitude of negligence was staggering — from the absence of clinical need (there are safe and effective ways to prevent HIV), to the uncertainty of harms (the twins may be at heightened risk from infections such as West Nile virus and influenza, and other potential consequences of both on- and off-target effects remain unknown), to a misleading consent process (the experiment was described as an “AIDS vaccine development project”), to a total lack of transparency (the data have not yet been published).3