The Chinese scientist who sparked an international outcry after announcing that he helped to create the world’s first genetically edited babies has publicly defended his actions at a summit in Hong Kong.
In a video posted to YouTube on Monday, He said that as a result of that intervention, two ostensibly healthy twin girls were born with their DNA altered to make them resistant to HIV « a few weeks ago. »
« For this specific case, I feel proud. I feel proudest, because they had lost hope for life, » said He, referring to the parents of the twins, the father of whom is believed to carry HIV.
« But with this protection, he (the father) sent a message saying he will work hard, earn money, and take care of his two daughters and his wife. »
He opened the presentation by thanking his school, the Southern University of Science and Technology in Shenzhen, « though they were unaware of the study conducted, » he said.
When asked about the costs, He claimed to have personally covered all expenses associated with the patients’ medical care. He also admitted that some of the sequencing costs were covered by startup funding from his university.
He said his research has been submitted to a scientific journal for review, without naming the publication and apologized for the result leaking « unexpectedly. »
He’s research has raised serious ethical questions around the transparency of gene editing and sparked calls for a global consensus as the pace of genetic editing technology outstrips the ability to make new laws or regulations.
In an question answer session after the presentation, He said he conducted two rounds of informed consent with the parents, including explaining that by removing the gene, known as CCR5, the babies could be vulnerable to other infections such as West Nile virus, though the informed consent form does not mention this.
The volunteers were found through an HIV/AIDs volunteer group, he said.
However, many of those in attendance at the Hong Kong conference have pointed out that while there are no global regulations in place outlawing He’s actions, his alleged use of CRISPR-cas9 represents a clear break with convention.
