The Twins Announced After the Edit and Before the Rules

On 25 November 2018 the Chinese scientist He Jiankui posted a video announcing that twin girls, known as Lulu and Nana, had been born in October after he edited a gene in their embryos. The gene, CCR5, was targeted in the hope of giving the girls resistance to HIV. He presented the work three days later at an international summit on human genome editing in Hong Kong. A third child, born later, was also found to have been edited.

Reaction was swift. Chinese authorities suspended his research within days, and 122 Chinese scientists condemned the work. Critics said that the medical need was slight, since HIV can be prevented and treated by other means, that the edit had been made unevenly in the girls' cells, and that the risks to children who had not consented could not be justified.

In December 2019 a court in Shenzhen convicted He of illegal practice of medicine and sentenced him to three years in prison with a fine of three million yuan. The court found that he had forged ethical review documents, concealed risks from the parents and had other people impersonate the parents during examinations. He was released in April 2022.

The case showed how far science could move ahead of regulation. The World Health Organization responded in 2019 by creating a registry to track research on human genome editing. Chinese lawyers reported in 2019 that rules were being drafted to hold anyone who manipulates the human genome responsible for resulting harm. The law has since tried to catch up with a technique that was announced only after it had been used on children.