A Controversial World-first: Gene-Edited Human Babies
Article Nov 28, 2018 | by Michele Wilson, PhD
Image credit: Pixabay
This week, a Chinese scientist claimed that he helped make the world-first gene-edited babies: two twin baby girls. He Jiankui, from the Southern University of Science and Technology, is now facing investigation over whether the experiment was illegal.
Reportedly, CRISPR-Cas9 was used to edit embryos for seven couples during IVF fertility treatment, and engineered the embryos to possess resistance to HIV infection.
In a video statement, He Jiankui claimed that “two beautiful little Chinese girls, named Lulu and Nana, came crying into this world as healthy as any other babies, a few weeks ago.”
The point of difference of this procedure, from regular IVF, was that he sent in ‘a little bit of protein, and instructions for a gene surgery.’
The announcement has come as a shock to the scientific community and has created controversial waves around the world.
Why is the CRISPR-baby announcement so controversial?
Germline cell and embryo genomic editing is illegal in many countries. It is not known whether the use of CRISPR-Cas9 for embryo editing is safe, and its use raises many ethical questions.
Furthermore, even if the future does have a place for CRISPR-Cas9 embryo-editing, this approach is being labeled as reckless and potentially damaging for the field.
This is something He Jiankui is aware of: “I know this is probably going to be the world’s first. So if it’s not safe, or (they) have any problems, it may ruin the entire field – and people might lose trust in the new technology.”
The Southern University of Science and Technology has denied being aware of the project, and said that Prof He had funded the experiment by himself.
Hundreds of Chinese professionals have signed a joint statement on social media, which opposes the behavior and highlights:
- The need to protect the personal privacy and legal rights of the respective babies and families
- The need for guidelines and management methods to ensure people’s integrity and safety
- The need to ensure the long-term, stable and healthy development of scientific rationality in China and the world
Why did He Jiankui take this approach?
“The world has moved on to the stage for embryo gene editing. There will be someone, somewhere, who is doing this. If it’s not me, it’s someone else. - He Jiankui”
This work was meant to be a secret, but its existence was leaked early. On Sunday, the secretive project was disclosed by MIT Technology Review.
Since then, He Jiankui has not tried to hide. He has released a series of videos which cover topics such as designer babies, explain why he chose to address HIV, and include 'draft' ethical principles of therapeutic assisted reproductive technologies.
In what comes across as a sincere video statement, He Jiankui speaks from his point of view as a father.
He stated that the girls’ father has HIV and highlighted the resulting discrimination, such as being fired from work, denied medical care, and forced sterilization of women.
“I understand my work will be controversial, but I believe families need this technology, and I’m willing to take the criticism for them.”
“I feel a strong responsibility that it’s not just to make it first, but also (to) make it an example – how to perform things like this, consider(-ing the) morality of the society and consider its impact to the public.”
While his intentions may be in the right place, one safe pregnancy does not ‘verify that the gene surgery worked safely, as intended.’
According to He Jiankui, society will decide how to move forward.
The world seems to be in agreement that this move has crossed an ethical line. The NHS released a statement condemning the situation, and expressed their concern of the 'deeply disturbing willingness by Dr. He and his team to flaunt international ethical norms.':
"It is profoundly unfortunate that the first apparent application of this powerful technique to the human germline has been carried out so irresponsibly."
In terms of the fate of the children and He Jiankui? Only time will tell.
It will be fascinating to see how binding international regulatory guidelines, which are so clearly needed, are developed in our lifetimes.
As highlighted by Dr. Kiran Musunuru, University of Pennsylvania: “We still have a lot of work to do to prove and establish that the procedure is actually safe. I would say that no babies should be born at this point in time following the use of this technology. It’s simply too early, too premature.”
“We have to balance the potential benefits, with the potential risks for the people involved. In cases where the substantial risks are substantially higher than the benefits – which I think is the case here – that is not ethical.”
The work has reportedly been submitted to an un-named journal for peer-review.
Dr Julia Kinder is a Down syndrome expert, national speaker, author, career consultant, fitness guru, and family practice physician. March 21st is World Down Syndrome Day, and we caught up with Julia to ask her how scientists, parents, and doctors can work together to benefit the lives of people with Down syndrome.READ MORE