A University of Kentucky bioethicist says claims that a Chinese scientist edited the genes of twin girls raise a host of scientific, ethical, and legal concerns – and that's before authorities have even determined their veracity.
UK bioethics professor Sara Rosenthal tells UKNow He Jiankui’s recent announcement that he genetically modified two babies to shield them from HIV leaves far more questions than answers, and that lack of transparency raises a number of red flags.
"The genome is out of the bottle," she says. "We don't know where this is going."
Rosenthal points to a lack of ethical oversight, concerns about the consent of the parents, flimsy medical or ethical justification, and perhaps the most pressing mystery: whether the scientist with Southern University of Science and Technology in Shenzhen, China actually succeeded. If so, she warns the resulting genetic code can be passed on.
"It has unknown consequences to the human genome overall. So essentially what he's done is he's changed the human DNA sequence for generations to come," she explains. "What if they all have large families? How many thousands of people are going to be affected by this?"
Experts caution the changes to a gene known as CCR5 could produce unintended results, even making descendents with the altered code more susceptible to other kinds of illnesses like West Nile virus. But with little data to go on, predictions are premature.
NPR reports that "at best, he may have protected only one twin from HIV, inadvertently making her genes ostensibly superior to her sister. It's also possible the genetic changes he made may not have protected either twin at all."
But Rosenthal says, even if the claims prove false or exaggerated, the scramble to respond shows just how unprepared the international community is when it comes to preventing and containing rogue research that pushes beyond generally accepted norms.
"I think that this case is bringing to light is the fact that we're very bad at self-regulating," she says. "And ethical norms are not enough. It doesn't really matter what the norms are. Perhaps it's time to actually pass some laws."
He's research already ran afoul of an international moratorium on creating live births with human germline editing and while some laws do exist, Rosenthal says it's time to strengthen the guardrails and bolster penalties for violators.
