World researchers call for urgent moratorium on genetically modified babies



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Scientists and ethicists from seven nations on Wednesday called for a moratorium on gene editing experiments designed to alter hereditary traits in human babies.

This is the latest warning from enthusiastic researchers disconcerted by the powerful genetic engineering technique known as CRISPR, which can potentially prevent congenital diseases, but could also lead to permanent changes in the human race and create a perverse market for humans. improved technologies. offspring, sometimes called "designer babies".

The call for moratorium, published as a commentary in the journal Nature, came in direct response to the actions of a Chinese researcher who, ignoring a global consensus on the ethical limits of gene editing, has altered implanted and completed embryos, resulting in the live birth of babies twins.

Chinese researcher, He Jiankui, said his experiment was aimed at modifying a gene to make babies resistant to HIV infection. He said that he knew that he would receive criticism but that he defended it as an ethical form of gene therapy and not as a form of aesthetic genetic modification.

But the scientific community was outraged, condemning its actions as "rogue human experimentation".

The new call for a moratorium is a recognition that the many warnings issued by the ethics conferences on gene editing are not clear and emphatic enough and, in the case of Chinese twins , have not prevented a violation of the ethic.

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 decision regarding the application of science to something with enormous societal consequences." Will we cross the line for us? to redefine ourselves? " Collins said.

the Nature The paper does not call for a permanent ban on hereditary gene editing. This is a call for a temporary halt without 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 not intended to result in a birth or modification of a gene for therapeutic purposes in the patient's non-germinal cells – called somatic cells – as these changes would not be heritable.

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

"To begin with, there should be a fixed period during which no clinical use of germ line modification is allowed, in addition to allowing for discussions on technical, scientific, medical, social, ethical and ethical issues to be addressed. consider before the germline modification is allowed, this period would give time to establish an international framework, "write the authors.

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 actually about just recalling what's been going on for several 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, in the general opinion, there is a clear line of demarcation: no one should edit the genes in such a way as to become a permanent feature of the human species, unless there is a general consensus on the makes such a change safe, necessary and ethical.

The 2015 summit in Washington ended with a consensus statement that was about to call for such a moratorium, but the wording was nuanced and complicated:

"It would be irresponsible to continue any clinical use of germ line modification unless and until (i) the safety and efficacy issues have been resolved, on the basis of an appropriate understanding and balance of risks, potential benefits and alternatives, and the company has reached a broad consensus on the merits of the proposed application and any clinical use should only be allowed under the appropriate regulatory supervision. "

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 people into hiding with that, I would prefer that they feel that they can discuss it openly." Gene editing, it's not gone, it's not okay. disappear, it's not going to end. "

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 The paper says 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're seeing more and more that they have advantages and disadvantages, we can not just give up and say we can not do anything about it, there's a way to guide it."

Lander said that after the revelation of his experience in China, he and the CRISPR pioneer, Zhang, raised the need to launch a new appeal in order to find a way to end the fraudulent application 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 Nature the comments make a distinction between genetic "correction" for therapeutic medical purposes and genetic "reinforcement", which may include "incorporating new instructions into a person's genome to improve, for example, its memory or muscles, or even to confer new biological functions, such as the ability to see infrared light or to break down 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 stand out", and he evoked the specter of what some people have called "designer babies" – genetic modifications intended to improve or increase offspring without any medical necessity. .

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

2019 © The Washington Post

This article was originally published by The Washington Post.

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