The world’s first genetically edited babies were born this month, according to Chinese researcher He Jiankui. He claims that the twin girls, Lulu and Nana, are resistant to the HIV virus thanks to changes made to their DNA via CRISPR technology. This remains illegal in the United States—such changes can only be tested on IVF embryos, which must be discarded after the experiment—but He feels his work is too important to be held up by looming ethical dilemmas.
“I understand my work will be controversial,” the Stanford-educated scientist explained, noting that he used this CRISPR gene editing technology to prevent HIV on seven different couples, but that only one experiment resulted in healthy pregnancy and birth. “But I believe families need this technology and I’m willing to take the criticism for them.”
He’s claim has yet to be published in a journal or confirmed by a third party. It is unclear whether these babies exist at all, let alone what the ethical and public health fallout might be. Absent a proper study, scientists are flying blind—and scientists dislike flying blind. “We know very little about the long term effects, and most people would agree that experimentation on humans for an avoidable condition just to improve our knowledge is morally and ethically unacceptable,” Dr. Yalda Jamshidi, a genetics expert at the University of London, told CNN. “Whether the results stand up to scrutiny or not, we need as a society to think hard and fast about when and where we are willing to take the risks.”
CRISPR itself is little cause for ethical concern. The technology allows scientists to activate or deactivate specific genes, and holds promise for creating more efficient crops, less dangerous mosquitoes and, treating and preventing human diseases. He’s work is controversial, however, because he sought to change the germ line itself, creating heritable changes in babies. The Chinese researcher claims that he disabled the CCR5 gene, which gives rise to a protein that allows HIV to enter a cell. People without CCR5 are, in theory, immune to HIV. But studies suggest they are also at higher risks of contracting West Nile and dying from the flu. He told the Associated Press that he is aware of the risks, but that it is his duty to press forward. “I feel a strong responsibility that it’s not just to make a first, but also make it an example,” He says.
“Society will decide what to do next.”