Science Fiction. In 2018, the first genome-edited baby will be born.
Reality. It’s 2018, the first genome-edited twins were born.
In November 2018, the world woke up to the news that the world’s first genome-edited babies were born. The Chinese scientist He Jiankui who lead this work, released the news in the most controversial way, in a series of five short movies on Youtube. The lack of scientific evidence in the form of a publication in a peer-reviewed journal, led to a public and scientific outcry. Nevertheless, this also created a feeling of skepticism, leaving some scientists unconcerned.
The story goes on to tell how an undercover clinical trial took place in China, where several couples volunteered to take part in what is now believed to be the very first clinical trial of its kind. The participants were composed of an HIV affected male and an unaffected female. Fearing to pass on the disease to their offspring, the couples joined He Jiankui’s clinical trial where he decided to edit the genome of embryos derived from in vitro fertilisation (IVF) of each couple, by deleting the CCR5 gene responsible for allowing the penetration of HIV to cells, using a novel and promising genome-editing technology known as CRISPR. Of all the participants (a few of which withdrew their participation), only one embryo was successfully edited and implanted into the uterus. Nine months later, Jiankui claims the birth of twin girls with one of them having the desired deletion. Great news right? Wrong.
Jiankui was not expecting the condemnation and criticism from the public and especially the scientific community. He thought he would come out of this a hero, an idol. A little less about He Jiankui, and a little more about the science behind this enterprise. The risks that come with the use of the CRISPR technology are substantial. For instance, the possibility of off-target effects - where the CRISPR machinery can target other genes - and as such lead to deletions that could have lasting impacts on the health of the child. Additionally, the technology is still in its infancy, meaning there isn’t enough scientific knowledge and data to comfortably understand and control any unwanted side-effects.
A lot of criticism from many scientists on Jiankui’s work focused on the unnecessary medical need of embryo genome-editing to protect the offsprings from HIV. There are currently several safe and effective methods that reduce the risk of transmission.
Jiankui did not make a few mistakes, he committed several and really considerable ones. The health of these two girls is now his responsibility. But what does this even mean? Will he take care of them for the rest of their lives? If they do end up with developing a disease, is he to blame? When He dies, who will be responsible then? What about the girls, will the one with the successful deletion be now favoured over the other? How will this play out for their own psychological well-being? Will the parents inform them that they are the first genome-edited babies ever? Will their life be dreadful, filled with tedious medical tests and exams? Those are some of the questions that remain unanswered.
But the most important question of all: How can we control for similar actions from taking place in the future? How can we control that no other scientist, with dark ideas and an unfulfilled ego, is somewhere in the world self-funding their work and misusing scientific innovations to create Frankensteins and commit false heroic actions?
The problem was not only Jiankui’s. The scientific community is also to blame. China is to blame. Sometimes science fiction helps us discover the vast realms of our imagination. We should put this imagination into action, into functional policies, functional laws. It appears to me that nowadays everything is possible, even science fiction. The line between science fiction and reality is so thin that we have been crossing it over and over for several years now without even being aware. So instead of waiting for life to manifest itself, for inventions to regulate themselves, hand in hand scientists and ethicists, lawyers and policy makers should sit together and regulate scientific inventions. Because apparently, we cannot rely on self-regulation and self-control, and He Jiankui is our best example.