Just prior to last week’s International Summit on Human Genome Editing, Dr. He Jian Kui made headlines as the first scientist to successfully genetically modify human babies, a pair of twins, Lulu and Nana, using CRISPR/Cas 9 technology.
Dr. He was already scheduled as a speaker at the Summit to present other research but also presented his preliminary findings to an audience of incredulous scientists who asked: “Will you publish the identity of Lulu and Nana in the future?” “Will it affect things if the individuals remain secret?” “How did you convince the parents when you started this experiment?” “Did you tell them about alternatives to avoid AIDS infection of their child?” And perhaps most importantly, “Why have you chosen to cross this red line?”
He not only hid his experiments from his now-former employer, but also from the scientific community at large. David Baltimore, Committee Chair and one of the world’s leading experts on genetics, explained “I don’t think [the research] has been a transparent process. We only found out about it after it happened, so we feel left out … I think there has been a failure of self-regulation by the scientific community because of the lack of transparency.”
He’s goal in modifying the embryos was to make the children resistant to HIV, deemed medically unnecessary as the twins were already HIV-negative, but also potentially dangerous to the twins’ health because of the unknown off-target effects. The doctor claims to have used CRISPR/Cas 9 to remove the CCR5 gene (which creates what is effectively HIV’s “entrance” to the human body) from the twins’ genome. He did this by recruiting couples who volunteered their germ cells: eggs from an HIV-negative female and sperm from an HIV-positive male partner. Following fertilization, he modified the DNA of the embryo using CRISPR before implanting it back into the mother, who he claims gave birth to the twins without incident.
CRISPR was discovered in 1987, but its potential as a powerful genetic editing tool in conjunction with Cas 9 wasn’t discovered until 2015. Shortly after this breakthrough was made, Baltimore was one of the many scientists who joined the first International Summit on Human Genome Editing to discuss the ethics and moral responsibilities that come with the power of this newly accessible technology.
At the conclusion of this year’s summit, the U.S. National Academies of Sciences, Engineering, and Medicine released a report declaring that human genome editing may be permitted “only for compelling medical reasons in the absence of reasonable alternatives, and with maximum transparency and strict oversight.”
In other words, the line had been drawn, and He Jian Kui crossed it.
It is unreasonable to claim that this experiment was for the benefit of mankind; this experiment was conducted to test the limits of CRISPR/Cas 9’s potential. As bioethicist Qiu Renzong put it: “there is a convenient and practical method to prevent HIV infection, to use genome editing is something like ‘to shot bird with cannon.’” He’s goal was not to prevent HIV transmission, but to demonstrate the power we possess over unconsenting humans. It took no genius to accomplish this feat, only recklessness.
This raises the question of informed consent. To what extent did the parents understand the power they were giving Dr. He? The scientist claims that the couple was “educated,” but did they truly comprehend the potential consequences of the experiment? Despite ongoing research in model organisms, we don’t yet fully understand the effects of CRISPR/Cas 9 editing in humans. By deleting the CCR5 gene, He not only put the twins at risk of off-target effects but increased their risk of succumbing to illnesses like influenza, which would be easily treated in a non-modified human.
No, germ cells cannot consent. But that does not give anyone the right to genetically engineer them however they please, lest we succumb again to the ideology of eugenics.
