NIH and leading scientists call for moratorium on gene-modified babies

But the scientific community has been outraged and condemned its actions as "illicit human experiments". The new call for a moratorium is a recognition that the many warnings that emerge from lectures on the ethics of gene modification have not been clear and energetic enough and the case of Chinese twins have not succeeded in preventing an ethical violation.

Among the authors of the Nature paper are two of the main inventors of the CRISPR system, Feng Zhang of the Broad Institute of MIT and Harvard and Emmanuelle Charpentier of the Max Planck Unit for Pathogen Science in Berlin. In addition to calling for a moratorium, the authors plead for the creation of an international governing body to oversee the application of technology.

Moreover, Francis Collins, director of the National Institutes of Health, issued a statement Wednesday supporting the call for a moratorium and a governing body, and in an interview with the Washington Post he said clarified that it was the position of the US government, discussed and cleared at the highest level.

"What we are talking about here is one of the most fundamental moments of the decision regarding the application of science to something of enormous societal consequence. Will we cross the line to redo ourselves?

The Nature document does not call for a permanent ban on hereditary trait gene editing. It is a call for a temporary halt, without the definitive expiry of the moratorium. It focuses specifically on experiments involving sperm, ova and embryos, also known as germ cells, and designed to lead to pregnancy. The moratorium would not cover laboratory research that is not intended to result in a therapeutic birth or genetic modification in the patient's non-germinal cells – called somatic cells – as these changes would not be transmissible.

The authors of the Nature document call for an "international framework" supported by a coordinating body that can be either fully independent or integrated into the World Health Organization. The authors envision voluntary compliance by individual nations that retain sovereignty over their scientific endeavors.

"For starters, there should be a fixed period during which no clinical use of germ line modification is allowed. In addition to allowing discussion of the technical, scientific, medical, social, ethical and moral issues to be considered before any germ line modification, this period would provide the time needed to establish an international framework, "the authors write.

One name is notably absent from the list of authors of the paper Nature: the pioneer CRISPR, Jennifer Doudna of the University of California at Berkeley. Doudna is a powerful voice on this issue. She not only invented much of the CRISPR technology, but she also warned early that she could be used for malicious purposes. She participated in the organization of the CRISPR Summit in Washington in December 2015, which was attended by scientific leaders from the National Academies of the United States, Great Britain and China.

Doudna said that she had refused Zhang's request to sign this new call for a moratorium and the creation of a new governing body. She added that she would continue to work with the national academies of the United States, the United Kingdom and China.

"My feeling is that it's just a matter of remembering what's been going on for a number of years," Doudna said.

The consensus among scientists and ethicists is that CRISPR and other gene editing techniques can have many desirable applications. This would include cell research, including human embryos, provided that the modified cells are not used to establish a pregnancy. Moreover, nothing stands in the way of using gene editing in somatic cells to treat a patient so as not to transmit these changes. An example: Modification of genes in blood cells to relieve sickle cell disease.

But the consensus is that there is a clear line of demarcation: no one should edit genes in a way that could become a permanent feature of the human species unless it is widely accepted that such a change is safe , necessary and ethical. The 2015 Washington summit was completed on a consensus statement that was about to call for such a moratorium, but the wording was nuanced and complicated: "It would be irresponsible to pursue any clinical use of germ line modification unless safety and efficacy issues have been resolved, based on an appropriate understanding and balance of risks, potential benefits and potential alternatives, and (ii) there is a broad societal consensus on the appropriateness of the proposed application. In addition, any clinical use should only be performed under appropriate regulatory oversight. "

This summit does not explicitly call for a "moratorium", which some researchers call "m-word".

"For me, this word implies the application," said Doudna. "I do not want to drive others underground with that. I would prefer that they feel that they can discuss it openly. The edition of genes, she is not gone, she will not disappear, she will not finish. "

The United States has laws that prevent this type of germ line modification. Legislation requires such experiments to be approved by the Food and Drug Administration, which, in turn, is precluded by law from evaluating these proposals. The Nature document states that about 30 countries have laws that directly or indirectly prevent this type of genetic engineering.

Eric Lander, lead author of the commentary in Nature and head of the Broad Institute of MIT and Harvard, said efforts to keep CRISPR under international scrutiny could be a model for more general management of powerful new technologies.

"I think that raises the question of how to govern complex technology," said Lander. "Powerful technologies, we are seeing more and more that they have advantages and disadvantages. We can not just give up and say there is no way to stop it. There is a way to guide him.

After revealing He's experience in China, Lander, along with CRISPR pioneer Zhang, explained that a new call was needed to find a way to stop the fraudulent use of this technology. They recruited other eminent researchers in the field and collaborated on the article.

CRISPR, which refers to regularly spaced short palindromic repeats, is more specifically called CRISPR-Cas9. It exploits a natural bacterial system that targets viruses that invade a cell. It has been described as molecular scissors. Technicians can use this system to modify the genome of an organism, for example by removing a genetic mutation associated with a disease. Invented early this decade, this type of gene editing has become more accurate, with fewer untargeted changes. Some clinical trials in human patients are underway, but they do not use germ cells.

The authors of the commentary Nature make a distinction between genetic "correction" for therapeutic medical purposes and genetic "reinforcement", which may include "the incorporation of new instructions into a person's genome to improve one's memory or its muscles, or even gives it entirely new biological functions, such as the ability to see infrared light or eliminate certain toxins. "

"I think it's a very powerful technology that has a lot of potential to improve our lives, improve our health, improve our environment, improve our agriculture," Zhang said about CRISPR. But he said that, like any powerful technology, "we can surpass ourselves," and he evoked the specter of what some people have called "baby designers," genetic modifications intended to improve or increase offspring without no medical necessity. .

"You can imagine a situation in which parents will feel compelled to change their children, unlike other parents," Zhang said. "It could exacerbate inequality. This could create a total mess in society.

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