At the end of November, MIT Technology Review told an amazing story: the story of the birth of the first children who went through gene editing, being embryos. Then it became known that the miracle occurred in a small Chinese hospital in which seven pairs, including HIV-positive men, donated eggs and seed to Dr. He Jiangui and his colleagues from the Southern Shenzhen Research Institute for editing using CRISPR-Cas9. Their goal was to remove the molecular “door” that allowed the AIDS virus to enter T cells, with the result that two children — twin girls — were immune to HIV.
Such a breakthrough could be the occasion for a worldwide celebration. But instead, the response in the media and the scientific community suggests that mankind literally stood in indecision before its next big leap.
Genetic editing of children: yes or no?
Accurate, constant and rational debugging of a person’s source code should be one of the greatest defining moments of our collective history. Lack of transparency, questionable use, muddy ethics and poor explanation of Dr. He’s work make it difficult to predict what will happen next.
The complete lack of publicly available data in this story is astounding. Transparency is considered – or was considered – one of the main characteristics defining science. As Karl Sagan put it, “incredible statements require incredible evidence.” Dr. He stated that his team acted within the framework of ethics, using DNA sequencing data that he had from these and other embryos. But where is this data? Where was the independent oversight of these data analyzes before the embryos were implanted into the mother?
Victory over AIDS may seem to be a delightful first application of CRISPR-Cas9 to the human germline – but are we missing an important opportunity? As many point out, we already know how to fight AIDS (condoms, retroviral treatment and education have proven effective). Clinical trials are already guiding us along the path of ex vivo AIDS treatment. These newborn girls, in particular, the cleaning protocol through which the father’s sperm passed, minimized the chances of transmitting the disease at conception.
For the giant leap of humanity in the future as a rationally edited species, we could struggle with genetic diseases that are difficult to access in the body and still have horrific predictions. Cystic fibrosis (affecting several body systems) and Alzheimer’s disease (which has not been treated for decades) come to mind immediately.
Dr. Xe actively defended the ethical side of his work, but many scientists and non-scientists disagree with him. It is not clear whether parents should be informed in a manner before signing the paper, whether there were any omissions. In addition, one of the twins could receive only partial protection in some cells (this phenomenon is known as mosaicism) from CRISPR. Dr. He’s team could have known about this mosaicism before putting the baby in the womb. If the girl would not be immune to HIV, what was the point of the experiment then?
Although these technical and ethical concerns deeply concern us, the evolving picture of one of perhaps the most important steps of humanity is far more exciting in this whole story. Dr. Heh claims that this controversial picture was the result of an unexpected leak. The coming days will show whether his team acted scientifically, ethically and responsibly.
What worries us most is that we are talking about two girls. Two children. Two people.
Protecting children from exploitation is essential. Unfortunately, now that people talk about this story, they talk about “embryos.” Not about names and not about faces. No messages “mother and children are in perfect order.” No ultrasound with a happy mother. Instead, we read about whether these children were to be born or not.
Is a child conceived in the IVF process less human than a child conceived in the traditional way? These conversations were supposed to stop by today. Currently, in many places in the world, no one even blinks when IVF is performed. After 50 years, our descendants may not even be able to imagine how we could breed in such an inconvenient way.
In short: children with the edited genome are the same people as all of us.
Will this hitch hinder the progress of our species before the jump? Or will we take the opportunity to change our look for something stronger, kind, strong? The decisions we make today will shape our future.