Scientist Defends Gene Editing Babies As Trial Paused

Lynette PayneNov 29, 2018

More than 100 scientists, majority in China, have condemned as "crazy" and unethical altering human genes after a geneticist claimed he had changed the genes of twin girls to create the first gene-edited babies.

With some hesitation, He told the crowd at the second International Summit on Human Gene Editing in Hong Kong that more babies modified by the revolutionary gene-editing tool CRISPR could be on the way. "For this specific case, I feel proud, actually, I feel proudest". But he told his colleagues that he felt "proud.proudest" of his achievement. Aside from "Lulu" and "Nana", two apparently healthy girls who have been born, there is another mother in the study in the "early stages" of pregnancy, he said.

It was unclear whether the pregnancy had ended or not.

He said details of the first births from the trial, which used gene-editing technology known as Crispr-Cas9, had been submitted to a scientific journal, which he did not name.

He said gene editing would help protect the girls from infection with HIV, the virus that causes AIDS. He's gene-editing research involving twin babies born last month has sparked controversy.

He also answered questions from gene experts Robin Lovell-Badge (Crick Institute) and Matt Porteus (Stanford), plus assembled audience members and the media. Using a technique called CRISPR-Cas9, the gene responsible for allowing HIV to infect the body was altered to mimic a natural genetic variation in some humans that confers strong resistance to the virus. However, there are concerns about safety and ethics. It's banned in some countries including the United States.

The girls' father has HIV, but it is well controlled by medication, so they are at no greater chance of contracting the disease than any other child, says Kiran Musunuru, an associate professor and regenerative biology expert at the University of Pennsylvania.

There were 31 embryos created through in vitro fertilization, and 70 percent were successfully edited.

The researcher claims that he worked with eight couples hoping to have children, the fathers of which were all HIV positive. Bioengineering Professor Michael Deem, who was the scientist's adviser when he studied in the USA, toldAP that he "absolutely" thinks the participants of the trials were fully aware of the risks involved.

"I would hope that the global bodies that have stated quite firmly up until this point that we would not want this to happen would still stay firm regardless of someone going rogue", she said.

"The project was largely carried out in secret, the medical necessity for inactivation of CCR5 in these infants is utterly unconvincing, the informed consent process appears highly questionable, and the possibility of damaging off-target effects has not been satisfactorily explored". It does not mention that such an experiment has never been done before.

Baltimore added, "I don't think it has been a transparent process".

He Jiankui said his results could be used for millions of people with inherited diseases. The health of both children would be monitored for the next 18 years.

"I must apologise this result was leaked unexpectedly", He said of the apparent breakthrough "The clinical trial was paused due to the current situation", he added.

In a statement to the Hong Kong stock exchange on Tuesday, the group said preliminary investigations indicated the signatures on the application form circulated on the internet are "suspected to have been forged, and no relevant meeting of the Medical Ethics Committee of the hospital in fact took place".

According to The Guardian, China's National Health Commission has ordered an investigation into He's claims, while the Shenzhen Health and Family Planning Commission has begun examining the ethics of the study.

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