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(CNN) – He Jiankui, the Chinese scientist who claimed to have helped create the first genetically modified babies in the world, defended his work in front of 700 people on Wednesday at the second edition of the International Summit on the Human Genome. He was "proud". of his accomplishment.
Last Monday, when she announced in an online video that two seemingly healthy twins were born this month from a modified embryo intended to make them resistant to HIV.
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"For this particular case, I am proud, I feel more proud, because they had lost the hope of living," he told the parents of twins, whose father would be HIV-positive. "But with this protection, [el padre] He sent a message saying that he would work hard, earn money and take care of his two daughters and his wife. "
When asked if her clinical trials had resulted in other pregnancies, she replied, "there is another, another possible pregnancy", but did not reveal more details. .
In addition, he stated that his research had been sent to a scientific journal for review, without naming the publication, and he apologized for the "unexpected" filtering of the results.
His research has raised serious ethical questions regarding the transparency of gene editing and has sparked calls for a binding code of conduct globally.
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During a question and answer session after the presentation, she said she had done two rounds of informed consent with the parents, with a total duration of three hours.
"The fact that he is directly involved in obtaining the patient's consent is a big problem," said Robin Lovell-Badge, head of the Stem Cell Biology and Genetics Laboratory at the University of Toronto. Francis Crick Institute, who led the discussion.
"This should never be done, there must be an independent third party able to adequately explain the risks and benefits," said Lovell-Badge.
Other concerns have focused on the CCR5 gene, which, according to conference scientists, is crucial for the human immune system. By eliminating it, the risk of susceptibility to other diseases such as West Nile virus and influenza increases.
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"When you change one thing, something else also changes," said Feng Zhang, one of the inventors of gene editing technique of the DNA sequence family. CRISPR.
However, many participants at the Hong Kong conference pointed out that, although it has not violated any international standard, its alleged use of CRISPR is a clear break with the way things are done under normal conditions.
"There is currently a fairly narrow consensus on what is and is not acceptable in genome editing, and the reported work represents a break with that," said David R. Liu, professor of Chemistry and Chemical Biology at the University of California. Harvard, pioneered in improving versions of CRISPR DNA sequences.
The potential for long-term social effects on girls was of particular concern at the Hong Kong Summit. A member of the audience asked him if he had thought about what the girls would look like and how they would be treated by society. "I do not know how to answer that question," he said.
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After his presentation, conference chair David Baltimore said the research was not medically necessary because there are other treatments for HIV.
Baltimore criticized its lack of transparency and referred to an agreement reached at the 2015 conference that it would be irresponsible to use this edition of the gene as long as security issues have not been solved.
Investments in millions of dollars
China has invested heavily in gene modification technology, funding research on a series of global "novelties," including the first use of the CRISPR-Cas9 gene modification tool in humans in China. 2016, in addition to the first informed use of gene editing to modify non-viable human embryos in 2015.
Last year, China spent a record $ 254 billion on research and development, and the country is catching up with the investment made by the United States in the same area. This generated an "arms race" called "Sputnik 2.0" by Dr. Carl June, a specialist in immunotherapy at the University of Pennsylvania.
"Unfair"
However, in a joint statement released Monday, more than 120 Chinese scientists have condemned the use of the CRISPR-Cas9 tool as a "blow" to the reputation of Chinese biomedical research.
"This is extremely unfair to Chinese scientists who are diligent, innovative and defending scientific ethics," they wrote, adding that "to experiment directly with human beings is not nothing more than a madness … as soon as it happens .human living, no one could predict the kind of impact this would have, as the modified hereditary substance will inevitably merge with the human genome group . "
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The Chinese government has also ordered an "immediate investigation" into He's claims and will follow the steps taken to refuse to participate in the proceedings, both at the university to which he is affiliated and at the hospital mentioned in the documents of ethical approval. .
In another event Wednesday, Rice University announced that it was investigating bioengineering professor Michael Deem after being quoted in the media for being involved in the work of He.
Deem has been a He in Rice advisor for over three years and has published three articles with him.
"This research raises troubling scientific, legal and ethical issues," said Doug Miller, director of the Rice University Press Office. In a statement, Miller said that Rice "had no knowledge of this work".
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