In late November, the MIT Technology Review told us an amazing story: the story of the birth of the first children who went through the edit genes being embryos. Then it became known that a miracle happened in a small Chinese hospital, in which seven couples, including HIV-positive men who gave the egg and the seed of the doctor Heh Stankoi and his colleagues from the southern research Institute of Shenzhen for editing, applying CRISPR-Cas9. Their goal was the removal of the molecular “door” that allows the AIDS virus to penetrate the T-cells, resulting in two children — twin girls — were immune to HIV.
Such a breakthrough would be cause for worldwide celebration. But instead, the response in the media and the scientific community suggests that humanity was literally frozen in indecision in front of their next big leap.
Genetic editing of children: Yes or no?
Accurate, consistent, and rational “debugging” of the source code of the person should be one of the greatest defining moments of our collective history. The lack of transparency, questionable use, shady ethics and poor explanation of Dr. Heh it difficult to predict what will happen next.
The complete lack of public data in this story is amazing. Transparency is considered — or was considered — one of the main defining characteristics of science. The words of Carl Sagan, “extraordinary claims require incredible evidence”. Dr. Hye said that his team had acted within the ethics of using data from DNA sequencing, that it was from these and other embryos. But where is the data? Where was the independent oversight on these data analyses, before the embryos are introduced into the mother?
Victory over AIDS would be nice for a first application of CRISPR-Cas9 to the germ line of a person — but are we missing an important opportunity? As many have noted, we already know how to deal with HIV / AIDS (condoms, antiretroviral treatment and education have proven effective). Clinical trials have already set us on a course of AIDS treatment ex vivo. These baby girls, in particular, the Protocol of purification, through which passed the sperm of the father, minimized the chances of transmission of the disease at conception.
For one giant leap for mankind in the future as rationally edited, we could fight genetic diseases that are hard to reach in the body and still have horrible predictions. Cystic fibrosis (affecting multiple systems of the body) and Alzheimer’s (which for decades did not respond to treatment) come to mind immediately.
Dr. Hye strongly defended the ethics of his work, but many scientists and non-scientists disagree with him. It is unclear whether parents have been informed properly before you sign the paper, whether there were any omissions. In addition, one of the twins could have only partial protection in some cells (this phenomenon is known as mosaicism) from CRISPR. The team of Dr. Hyo could know about this mosaicism before he placed the child in the womb. If the girl would not be immune to HIV, then what was the point of the experiment?
Although these technical and ethical concerns are deeply concerned about us, far more thrilling in this story is the emerging picture around one of, if not the most important steps of mankind. Dr. Hye argues that this mixed picture was the result of an unexpected leakage. The coming days will show, if acted his team scientifically, ethically and responsibly.
Most excited about what we’re talking about two girls. Two children. Two people.
To protect children from exploitation is extremely important. Unfortunately, now, when people talk about this story, they talk about “embryos”. Not about names and not about the person. No reports of “mother and children in order”. No ultrasound with a happy mother. Instead, we read of must have been these children to be born or not.
Whether the child conceived in the IVF process is less human than a child conceived in a traditional way? This talk was supposed to stop by today. Currently, in many places of the world, no one even blinks when there is an ECHO. In 50 years our descendants may not be able to imagine how we could reproduce in such an uncomfortable way.
In short: children with the edited genome the same people, as we all do.
You think this hitch before jumping to the progress of our species? Or we will take the opportunity to change our species into something more strong, kind, sturdy? The decisions we make today will shape our future.