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THE CONTROVERSIAL SCIENTIFIC HE JIANKUI “BABY DESIGNER” ENTERS THE LIST OF THE MOST RELEVANT OF 2018

Since he published his genetic research for protection against HIV, last November 2018, he has not been indifferent in the global scientific debate .

His research has been severely criticized causing international outrage by ignoring the ethical considerations and expose to unknown risks two baby girls because of his experiments for an uncertain benefit.

On December 18, 2018, Nature magazine included it in its annual list of the 10 most relevant researchers in scientific subjects of the year 2018.

THE BABY DESIGNER SCIENTIST

Already in 2010 He Jiankui together with Michael W. Deem published an article about the CRISPR / Cas9 system, beginning of what would later be his gene edition that he would develop in 2017 with experiments on mice, monkeys and approximately 300 human embryos .

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Despite it was already known that he was doing genetic researches on human , and MIT Technology Review published an article on clinical trials conducted in China that same month and a later video on YouTube, international criticism did not arrive until the Second International Summit on the Human Genome Edition in Hong Kong on November 27, 2018.

In his report he explained how he had conducted the ” clinical trial “ from couples contacted by an association in defense against AIDS called Baihualin in Beijing. In these couples, who obviously wanted to have children, the man was affected by HIV and the woman was not.

The lack of transparency in the statements did not clearly determine whether the trial had been approved according to an ethical institutional review before it began , nor if the participants had been adequately informed prior to their consent.

THE EXPERIMENT

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From the sperm and ovules of the selected couples, he fertilized an embryo ” in vitro ” and edited the genomes of the embryos related to CRISPR / Cas9 . Specifically to the CCR5 gene which encodes a protein that the HIV-1 virus uses to penetrate cells .

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Basically, his intent was to create a specific mutation of the gene CCR5 Δ 32 , a gene that very few people have naturally assumed that offer innate resistance virus HIV-1.

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Once the genetically edited embryo and its subsequent gestation were implanted , two twin girls Lulu and Nana both healthy were born on November 8 , but it was not made public until November 26 .

Through a video posted by YouTube the scientist showed the girls with their parents, and supposedly demonstrates that the edition worked by altering only the precise gene.

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These births caused a greater shock and outrage among scientists all around the world and public opinion. Three days later on November 29, 2018 the Chinese authorities suspended all activities of the research of Dr. He Jiankui .

Later in December , after a public speech, the scientific disappeared from the media scene, causing widespread rumors of his arrest, made the University of Science and Technology South China deny it.

Obviously, if the positive result of the experiment were true , the birth of the twins would be a controversial but also important advance in the investigation of genome editing.

But it’s apparently not the only pregnancy of this trial, as the scientist confirmed the existence of the other pregnant mother.

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As we have said , so far the investigations made public have been carried out towards a specific objective: the elimination of mutations that cause genetic diseases . But it was known that many other experiments have had effects outside this objective which raises major safety concerns.

According to other scientists, there is currently no medical need to edit the human genome in an embryo to prevent HIV infection. There are “ safe and effective ways ” in genetics to protect people against HIV that do not involve editing the genes of an embryo, explains Dr. Fyodor Urnov, Deputy Director of the Altius Institute for Biomedical Sciences , former Vice President of Research at Sangamo Therapeutics , expert in the edition of the human genome.

Also Professor Paula Cannon , of the Keck School of Medicine of USC , virus expert, stem cell and gene therapy, questions the decision to publish the gene and disable the CCR5 protein in embryos. In his opinion some strains of HIV do not always use that protein to enter cells, they use another called CXCR4 . Even people who are naturally negative to CCR5 are not completely resistant to the virus, so they could be infected by a CXCR4 strain.

According to Professor Cannon, the fact that is the father and not the HIV-positive mother indicates that there is no real risk of transmission to children born.

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Similarly the expert in bioethics Tetsuya Ishii at Hokkaido University in Sapporo, Japan, does not believe is a justified practice , as in the case of transmission of maternal illness to child, there are treatments through medicines received in the first four to six week old baby and are not breastfed HIV – positive mothers and other strategies such as the cesarean delivery that could prevent the infection from spreading during delivery, which reduce the risk 2% or less .

It would therefore be highly recommended prevention about it , taking all the measures already existing and practicable to reduce the most likely risk that the baby will be born infected. Recommendations that are widely explained by the US Department of Health and Human Services (LINK) in addition to other agencies interested in AIDS prevention .

Apparently according to experts the experiments in the edition of genes in embryos, exposes normal and healthy children to a risk without any real benefit necessary. For what is considered premature, dangerous and irresponsible, as Joyce Harper of the University College London says: ” Today’s report on the genome edition of human embryos for HIV resistance is premature, dangerous and irresponsible .”

Of course the transparency of the work of Dr. He Jiankui is not well defined, there are many wondered as unanswered and unclarified.

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For example, if parents had been adequately informed of the risks involved in this trial , the reason for choosing the elimination of CCR5 when there are other proven methods for HIV prevention in the mother and child phase , and why precisely CCR5 a gene normally present in people, whose functions that may be beneficial and even necessary are still unknown . But also, why did choosing couples in which the man was the carrier of HIV ? , since it is women with HIV who are most likely to transmit the virus to their children.

REACTIONS AFTER PUBLICATION

All these doubts around the integrity of the experiment process raised a cloud of ethical uncertainty that exploded in harsh criticism of the scientist’s behavior.

” If it were true … this would be a highly irresponsible, unethical and dangerous use of genome editing technology, “ said development biologist Kathy Niakan of the Francis Crick Institute .

As in the opinion of George Church , a geneticist at Harvard University, editing genes for HIV resistance could be ” justifiable “ since HIV is ” a major and growing threat to public health, “ but the use of a Human embryo and its subsequent birth is very questionable, since the use of that embryo suggests that its main research interest is “to test the issue instead of avoiding this disease “, without properly considering the relative risks .

Although obviously exists concern to create “designed babies”, the need to genetically investigate man is understandable and inevitable , as shares Arthur Caplan bioethicist at the School of Medicine, New York University , but always ensuring that research scientists have priority over trying to prevent and cure diseases and not over scientific progress in itself.

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Likewise, Carl Zimmer compared this controversy with the one that caused in his time the edition of human genes for MRT mitochondrial replacement therapy that was subsequently approved in the United Kingdom.

In the United States, as soon as the essay was published, they condemned He Jiankui and his team for intentionally mocking international ethical standards , considering his work as irresponsible, with a high health risk for the girls , not very transparent in the consent of the participants, done in secret and unconvincing.

The Chinese institutions after the international controversy created after its publication, especially sensitive to its reputation, also condemned the scientist Jiankui, although initially had received grants public.

The hospital where the investigations were carried out stated : ” The company does not approve the means of the Reclaimed Project, and has reservations regarding the accuracy, reliability and veracity of its contents and results .”

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The Chinese Academy of Medical Sciences published in the review Lancet its “ opposition to any clinical operation of genome editing of the human embryo for reproductive purposes in violation of laws, regulations and ethical standards in the absence of a full scientific evaluation , … neither should they finance such research nor will they do so , “highlighting that the” genomic edition of germ cells or early embryos is still in the basic research stage . “

In China, more than 100 biomedical scientists have declared their contradiction in “ jumping directly to human experiments ” and ask the Chinese authorities to investigate and regulate more effectively this type of research, concluding that “ It is extremely unfair to the vast majority of diligent scientists and conscientious in China who are investigating and innovating while strictly adhering to ethical limits . “

According to He Jiankui, genome editing in embryos should only be allowed in cases related to diseases such as in the case of his experiment and should be prohibited for genetic adjustments to select facial features of hair and eye color. ” I understand that my work will be controversial, but I think families need this technology and I am willing to accept criticism for them, “ he said in an interview.

But his declarations are worthless because it already exist the ” technology ” for the prevention and what is missing today is one effective awareness campaign towards the dissemination of such information and use effective practice . This would increase the likelihood of effective prevention, by minimizing damage and avoiding unnecessary risks of this kind of experiments like Dr. He Jiankui .

PUBLIC OPINION

Although mostly scientific opinion is against it , the public seems to support the genome editing embryos by correcting mutations that can cause disease.

A survey of 319 people conducted by the Nuffield Council on Bioethics in London 2017 showed that up to 70% were in favor of gene editing if this allowed infertile couples to have children or if it corrected a harmful mutation to the embryo.

Without a doubt, this is a topical issue that we will continue to listen to.