WHO panel demands a registry for human gene editing

The committee was created in the wake of the birth of the first gene-edited babies — the result of an experiment by a Chinese scientist, He Jiankui, who genetically altered human embryos and implanted them in a woman who gave birth to twins last fall.

His actions stirred alarm among other researchers, ethicists and policymakers, because so little is known about the safety and health effects of editing the genome of a human embryo. Many fear the technology could be misused to create “designer babies” genetically altered to heighten physical features, intelligence or athletic prowess.

Scientific and medical institutions in the United States and around the world have pledged to establish clear guidelines and a system to monitor such research. On Tuesday, after its first meeting, the WHO committee outlined some of the steps it intends to take.

“The committee agrees that it is irresponsible at this time for anyone to proceed with clinical applications of human germ-line genome editing,” Dr. Margaret Hamburg, a co-chairwoman of the committee, said in a press briefing.

The phrase “germ line” refers to the modification of genetic traits that may be handed down to future generations. Hamburg said the proposed registry is partly intended to “increase accountability of scientific researchers around the world.”

Scientific journals, and funders of this research, will be asked to require that anything they publish or finance be listed in the registry, she said. The committee asked the WHO to immediately start creating the registry.

“This could make a very important difference and will really increase transparency,” said Hamburg.

The committee also said that over the next two years, it will develop recommendations for a “comprehensive governance framework” to help prevent rogue uses of genome editing.

“Technologies are just moving so fast, so we think it’s really very important for us to engage with the scientific community,” Dr. Vasee Moorthy, a scientific adviser to the WHO, said at the briefing.

“Really, the long-term vision is accelerate the benefits for people around the world while reducing risk.”

This article originally appeared in The New York Times.