‘Doesn’t make sense’

Some scientists not connected with the work expressed surprise at the panel’s inclusion of diseases such as sickle cell and cystic fibrosis, which have a wide range of severity and existing treatments.

If drugs or gene therapy after birth can treat a disease, “then it doesn’t make sense to me to layer the additional medical and ethical risks” of editing embryos to try to prevent it, said David Liu, Harvard University professor and co-founder of several gene editing companies. He is paid by the Howard Hughes Medical Institute, which also supports AP’s Health & Science Department.

Jennifer Doudna, a gene editing pioneer from the University of California, Berkeley, said she also was struck by the inclusion of cystic fibrosis.

“It’s a disease that can be managed in some cases,” she said.

Gene editing of blood cells after birth seems a potential cure for sickle cell, and “there’s already been success with one patient” using CRISPR, she noted.

Kahn said not every case would meet all of the criteria the panel set, and if gene therapy turns out to work, “I think we have a different conversation” about editing’s risks and benefits.

Regardless, the report shows that editing embryos, eggs or sperm should not be done yet because “the technology is too early stage,” Doudna said.

“If there ever was confusion or if anyone in the past could say it wasn’t clear ... it’s now very clear” that it’s taboo, she said. Gene editing is a powerful technology and should be pursued with international standards and full transparency, “not having it happening in the shadows.”