18 December 2018. PenzaNews. Experiments with the human genome violate law and ethical standards due to the lack of a regulatory framework and evidence of the method’s safety. Such an opinion was expressed by a professor at the American University in Sharjah, United Arab Emirates, Nidhal Guessoum in his article named Ethical Red Lines Urgently Needed for Human Gene Editing, published in response to the statement of the Chinese scientist He Jiankui about the creation of the world's first babies with artificially modified genes.

Photo: Iris Tong, Wikipedia.org

“I must first stress that no scientific breakthrough was made in this instance — no procedure that other scientists could not have achieved. Indeed, the technique that was utilized, Crispr-Cas9, often simply referred to as Crispr, was developed a few years ago and was known to potentially have wide-ranging and powerful applications, including on human genes,” the article says.

“Crispr, in a nutshell, is a biochemical technique that allows scientists to send molecules to literally cut pieces of a gene – a little segment of DNA – and thus either render it inoperative or modified in a specific way,” Nidhal Guessoum explains.

However, according to him, the global community has not yet developed any legal basis for using this methodology for people.

“In December 2015, a few months after the technique was revealed to the world, an international summit on human gene editing was held in Washington. But the consequences of editing human genes are very difficult to predict,” the expert says.

In his opinion, Crispr is a very powerful method.

“Suppose you inherited from one of your parents a gene that makes you likely to develop a certain deficiency like myopia, type 1 diabetes, etc.; one could, in principle, target the genes that are responsible for these illnesses and turn them off before conception. Surely, we would all welcome that and encourage scientists to perform it,” the analyst says.

From his point of view, the Chinese scientist who edited the two girls’ genes to make them HIV “resistant” might also have good intentions, but did not take into account a number of facts.

“First, one cannot guarantee success, and indeed one of the few experts who got the chance to review Dr. He Jiankui’s paper which is still unpublished, has stated that, in one of the twins, the editing was successful in only one of the two genes; the girl will thus not have the resistance to HIV that was intended,” Nidhal Guessoum says.

“Secondly, and more importantly, there was evidence in He’s data that other genes or segments of the DNA were affected, and who knows what impact that will have on the girl’s traits, not to mention her children’s? Indeed, modifications on genes often express themselves only in offspring,” the author adds.

Moreover, according to him, today it is impossible to draw up a full list of modifications that will have occurred in this intervention in the absence of the necessary knowledge and technology.

“And, if you’re not yet shocked by these developments, here’s the worst of it. He did perform a gene sequence of the two groups of cells after the gene editing but before the cells were put into the uterus for the mother to carry until birth. […] He saw or at least should have seen that the editing was not totally successful but he still proceeded with the implantation into the mother’s uterus,” the expert says.

He also criticizes the fact that the experiment was conducted in private, without coordination with the scientific community and government agencies.

“He Jiankui didn’t bother to consult with colleagues, let them review the results, and supervise or monitor the experiment. He proceeded single-handedly, being convinced that ‘parents should get the chance to use this technique.’ I wonder whether he even informed the parents of the full results of his work,” Nidhal Guessoum says.

According to him, dozens of countries have laws that explicitly prohibit this experiments, but not China.

“There are additional concerns with this line of research. First, any error made on a gene in an embryo will be carried by the descendants and passed on to others by reproduction, and such errors will be impossible to remove from humanity. Moreover, even if one checks that no mistakes have been made in such ‘surgery’ before any further steps are taken, who is to guarantee that the technique will only be used for therapeutic purposes, and not for enhancements or evil intentions?” the analyst wonders.

In fact, according to him, clinics around the world are already offering ‘designer babies,’ what carries the risk that people may want their child to definitely become a sports champion or a virtuoso musician.

“Once that genie is out of the bottle, nobody knows what consequences will follow,” the author stresses.

In his opinion, the 2015 international summit on human gene editing issued very clear and strong recommendations regarding further research in this area.

“It would be irresponsible to proceed with any clinical use of hereditary cell editing unless and until the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives; and there is broad societal consensus about the appropriateness of the proposed application. Moreover, any clinical use should proceed only under appropriate regulatory oversight. At present, these criteria have not been met for any proposed clinical use,” the expert cites the statement by representatives of the organizing committee of the summit.

Ethical international guidelines, if not red lines, are urgently needed for human gene editing, he believes.

“We must not allow individual scientists to recruit consenting parents for dubious experiments through false promises or decide on their own what research is good or bad. The whole of humanity is at stake in such research,” Nidhal Guessoum concludes.