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 as embryos. Then it became known that a miracle happened in a small Chinese hospital where seven couples, including HIV-positive men, donated eggs and semen to Dr. He Jiangkui and his colleagues at the Shenzhen Southern Research Institute for editing with CRISPR-Cas9. Their goal was to remove the molecular "door" that allowed the AIDS virus to enter T cells, causing two children - twin girls - to become immune to HIV.
Such a breakthrough could be a cause for worldwide celebration. But instead, the response in the media and the scientific community suggests that humanity literally froze in indecision before its next big leap.
Genetic Editing of Children: Yes or No?
Accurate, consistent and rational debugging of human source code should be one of the greatest defining moments of our collective history. Lack of transparency, questionable application, muddy ethics, and poor explanation of Dr. He's work make it difficult to predict what's next.
The total lack of publicly available data in this story is striking. Transparency is considered - or was thought to be - one of the main defining characteristics of science. As Carl Sagan put it, "incredible claims require incredible proof." Dr. He stated that his team was acting in an ethical manner using the DNA sequencing data 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 in the mother?
Defeating AIDS may seem like 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 been effective). Clinical trials are already guiding us on the ex vivo treatment of AIDS. In these newborn girls, in particular, the purification protocol through which the father's sperm was passed minimized the chances of transmission of the disease at conception.
For humanity's giant leap forward into the future as a rationally edited species, we might be fighting genetic diseases that are hard to come by in the body and still have dire projections. Cystic fibrosis (affecting multiple body systems) and Alzheimer's disease (which has been untreated for decades) spring to mind.
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Dr. He actively defended the ethical side of his work, but many scholars and non-scholars disagree with him. It is unclear whether the parents were properly informed before signing the paper, whether there were any omissions. In addition, one of the twins could receive only partial protection in some cells (a phenomenon known as mosaicism) from CRISPR. Dr. He's team may have known about this mosaicism before placing the baby in the womb. If the girl did not become immune to HIV, what then was the essence of the experiment?
While these technical and ethical concerns are deeply troubling to us, far more disturbing in this whole story is the emerging picture around one of perhaps the most important steps of humanity. Dr. He claims that this controversial picture is the result of an unexpected leak. The coming days will show whether his team acted scientifically, ethically, and responsibly.
What worries me most is that we're talking about two girls. Two children. Two people.
Protecting children from exploitation is essential. Unfortunately, now when people talk about this story, they are talking about "embryos." Not about names and not about faces. No messages "mother and children are fine". No ultrasounds with a happy mother. Instead, we read about whether these children should have been born or not.
Is a child conceived through IVF less human than a child conceived in a traditional way? These conversations should have ended by today. Nowadays, in many places around the world, no one even blinks when IVF is performed. In 50 years, our descendants may not even be able to imagine how we could reproduce in such an inconvenient way.
In short: children with an edited genome are the same people as the rest of us.
Will this hitch before jumping hinder the progress of our species? Or will we take the opportunity to change our appearance to something stronger, kind, stronger? The decisions we make today will shape our future.
Ilya Khel