Gene-edited babies raise deep ethical concerns
it to work to modify DNA sequences. This has the long-term potential to repair defects that cause well-recognized genetic disorders. So despite understandable excitement about the possibility of curing human diseases, there is a widely held understanding that this technology is not yet ready for human trials.
Nonetheless, Chinese research has violated these standards before in modifying the genes of human embryos as early as 2015. But in this case, one scientist has gone even further by actually implanting such modified embryos to produce babies. Using edited genes in an actual pregnancy is completely illegal in many countries, including the U.S.
Here’s another disturbing aspect of all this: The embryos involved in this trial were all healthy; they had no obvious genetic defects. To modify their genes in this way is blatant and unwarranted experimentation. Ethicist Julian Savulescu has called it “monstrous.”
In an amazing twist, rather than submitting his work to proper professional scrutiny by publishing in a medical journal or by a presentation at a scientific conference, Chinese scientist He Jiankui announced the birth of the twin girls via YouTube, posted on Nov. 26. He calls them “Lulu and Nana,” and their parents “Mark and Grace.” To protect their privacy, none of these are their real names. And the scientist seems sincere in his statement, “As a father of two girls, I can’t think of a gift more wholesome and beautiful for society than giving another couple a chance to start a loving family.” But his hubris and sensationalism will ensure that legitimate medical science will never accept his work. It appears to be nothing more than a callous publicity stunt.
The response to his YouTube post would seem to confirm this assessment. There were more than 1,400 comments after it appeared, most of them negative. One stated, “As a Chinese researcher, I am very angry and shamefaced about this experiment.” Another, “You just opened Pandora’s box on behalf of the entire human race.”
To be fair, Mark, the father of the twins, is HIV-positive, so he has an understandable desire to avoid infecting his children. According to the video, this is an example of “gene surgery,” to (remove) the doorway through which HIV enters to infect people. In more precise terminology, the infants’ genomes were altered to disable CCR5, a gene responsible for creating the entry point for HIV to infect cells. With this gene disabled, the girls are theoretically immune to HIV.
But there are many safe and effective ways to prevent vertical transmission of the virus, and none of them involve highly experimental and risky therapies with the potential to do more harm than good. So it is highly problematic to offer gene editing to couples undergoing in vitro fertilization, for there could be no truly informed consent. As a reminder, there were six other couples involved in this trial, and reportedly, another woman is also now pregnant with a gene-edited baby.
If the couples completely understood what was going on, it is doubtful they would ever give their consent. And how many human embryos were tossed down the drain to accomplish this “wonderful” result? We haven’t been told.
Feeling outraged yet? We must reject and rebuke CRISPR gene editing in human beings until we know much more about the unintended consequences of this experimental technique. Otherwise, what now seems to us as monstrous may one day become an accepted routine.