A Chinese scientist, He Jiankui, is the first person in the world to successfully alter a gene in a human embryo, implant it into a woman who then gave birth to twin girls. Scientists are facing a serious ethical dilemma after this new discovery and how Dr. He has done it.
The gene he edited is called CCR₅ which creates a protein that, according to the New York Times, “makes it possible for H.I.V., the virus that causes AIDS, to infect people’s cells.” He recruited couples where the man tested H.I.V positive and the mother did not and used the Crispr-Cas9 editing technique to attempt to make the babies H.I.V resistant.
There are more than a few ethical dilemmas to consider when evaluating Dr. He’s research. One being the necessity of it, and two the implications of embryo gene editing in the future.
Editing the genes of human embryos is illegal in many countries including the United States.
China has currently stopped Dr. He’s work until they properly evaluate if he had broken any laws. There are also concerns about whether the people participating in the study had been properly informed of the gene-altering as well as the risks.
The future of the gene-altered babies is also up in the air. Gene altering means changing every gene in every cell which will then be inherited by the gene-altered child’s own children. There is no way to predict what will happen, how this will affect future generations, or what this will do to the affected genes in the long term.
Dr. He disabled a normal gene. If people are born with two copies of this gene that are both disabled, they are resistant to H.I.V but they are more susceptible to other diseases such as the West Nile Virus and Japanese encephalitis. His meddling could mean those babies being much more susceptible to even more diseases.
Scientists agree that this type of gene altering should only happen if there is a serious danger or to protect against a disease where there is no other option. There are much easier ways to prevent H.I.V and medication to manage the symptoms and slow down the presence of AIDS.
Even more concerning is the way CRISPR works.
When a scientist alters one gene, other genes are altered without the scientist intending to. In addition, according to the New York Times, “there are also circumstances, called mosaicism, where some cells contain the edited gene and others do not.” Although Dr. He claims that no other genes were altered and the twin girls were born healthy, there is no way to confirm that.
Scientists are concerned about some information Dr. He presented during a conference in Hong Kong. He said he was only able to disable both sets of the CCR₅ gene in one of the babies. In the other, he was only able to disable one set, but he implanted the embryo anyway. He claims he told the parents of the situation but they wanted both embryos implanted.
Dr. Kiran Musunuru, a geneticist at the University of Pennsylvania reviewed the data and said “there’s clear evidence of mosaicism” in the edited embryos of both twins. He continues, “It’s as if you took the embryos and dipped them in acid and said ‘You know what, I’m just going to go ahead with the implantation anyway.’ It’s not that much different.” While he isn’t sure if the babies themselves have mosaicism, one of the baby’s placenta was mosaic which is not a good sign.
The United States Food and Drug Administration is forbidden to even consider human embryo gene editing. The National Institute of Health is prohibited from funding any kind of research involving this. The National Academies of Science, Engineering, and Medicine says that human embryo gene editing is only acceptable in the most dire of circumstances and only to reverse a genetic disorder or disease and there must be a plan in place to follow these children.
Dr. He bypassed all these safeguards and might have become a modern day Frankenstein.
Although it is not possible to create babies with super intelligence, beauty, or athletic ability yet because it is a combination of hundreds of genes acting together, this is where this type of testing might lead. It creates the possibility of a “designer baby” only accessible to the rich and further disenfranchising people of lower economic backgrounds.
There are a lot of things unknown currently. Dr. He has not released the names of the parents, the children, or released his data. He has given the first names of the girls, Lulu and Nana, but those may be pseudonyms. Until he publishes his findings in a medical journal, the public will never be sure of the detailed results or even if the babies were born.1
Also published on Medium.