World’s first gene-edited babies: scientific breakthrough or violation of ethics?

Earlier this month, the world’s first genetically edited babies were born. According to the Chinese researcher, He Jiankui, he used a powerful new tool to rewrite DNA code. If his claim is true, it is a giant step for humanity – and an ethically challenging issue as well. 


Recently, scientists discovered an easy way to edit gene with the CRISPR-cas9 tool, which makes it possible to supply a needed gene or to turn off a problematic one. However, this tool has only been used in adults to treat fatal diseases, and these changes are not passed on to future generations. 


Gene editing on this level is prohibited in the US, because the altered gene can be passed onto future generations, causing harm to other genes. Many scientists believe the procedure to be unsafe. China, on the other hand, does not prohibit gene editing.  


He Jiankui claims to have altered embryos during fertility treatments, thus resulting in the pregnancy that gave the world genetically edited baby girls. The scientist said that his goal in this particular case was to edit a trait that some people have naturally: the ability to resist HIV infection and the AIDS virus. His announcement was made at an international conference, and He has not published anything in a medical journal, which would give independent confirmation to his research. 


“I feel a strong responsibility that it’s not just to make a first, but also make it an example”, He told the Associated Press. “Society will decide what to do next”. 


And while some scientists thought He’s actions to constitute justifiable research, other scientists condemned He’s human experimentation: “[It’s} unconscionable ... an experiment on human beings that is not morally or ethically defensible”, said Dr. Kiran Musunuru, a University of Pennsylvania gene editing expert. 


“This is far too premature”, echoed Dr. Eric Topol, head of the Scripps Research Translational Institute in California. “We’re dealing with the operating instructions of a human being. It’s a big deal.” 


He Jiankui studied at Rice and Stanford in the US before returning to China to open a genetics lab in Shenzhen at the Southern University of Science and Technology. The university is currently planning to investigate He’s research, as it “seriously violated academic ethics and standards”, according to the university’s spokesperson. He said that he practiced on animals before proceeding to humans.  


The gene in question – CCR5 forms a protein gateway that allows HIV to enter cells. He’s idea was to disable this gene to curtail the HIV infections, which are a growing problem in China. In his most recent study, seven couples were undergoing fertility treatmetns. All the men had HIV, and the women did not. He altered the CCR5 gene during IVF to ensure that the couples could have babies without susceptibility to the virus. Overall, 16 of the 22 embryos were edited, and the couples could choose whether or not to use the edited embryo. Eleven embryos were used in six IVF attempts before the twin pregnancy happened. 


According to He, one twin had both copies of the CCR5 gene altered, meaning she was protected from potential HIV infection, and the other just one, which means that she can still be susceptible to HIV. He said that there’s no evidence of harm to other genes. 


Scientists who were able to review materials He provided the Associated Press said that they were inconclusive in terms of both proving that the editing works, or ruling out harm to other genes.  


“In that child, there really was almost nothing to be gained in terms of protection against HIV and yet you’re exposing that child to all the unknown safety risks,” Musunuru said, referring to the twin who received only one altered gene. 


There are downsides to disabling the CCR5 gene, said Musunuru. People without it face higher risk of contracting other viruses and are more likely to suffer fatal outcomes from influenza.

Questions also remain about how much participants truly understood about the study they participated in, although He says he disclosed the newness of this procedure and the risks it carries.  


“I believe this is going to help the families and their children”, He said. Asked if harm were to result, he said: “I would feel the same pain as they do and it’s going to be my own responsibility.” 


However, is it worth putting babies at risk of the unknown? Musunuru thinks not, because there are many ways to prevent an HIV infection, and if it does occur, it can be managed. The dangers of the medical risks from the gene editing, however, are still unknown.