A researcher at the Southern University of Science and Technology in Shenzhen, China, has claimed to have successfully created the planet’s first genetically-modified babies.
He Jiankui, who also goes by the moniker JK, told the Associated Press that he was able to genetically alter seven different embryos during fertility treatments, with only one pregnancy to show for his efforts, so far.
Jiankui also revealed the breakthrough on Monday in Hong Kong to one of the organizers of an international conference on gene editing, due to commence on Tuesday.
“I feel a strong responsibility that it’s not just to make a first, but also make it an example,” JK said.
“Society will decide what to do next,” he added, probably alluding to the ethicality and acceptability of the controversial procedure.
JK told AP that his aim was not to prevent or find a cure for an inherited disease but rather to create the ability to resist possible future HIV and AIDS infection, a trait few people are naturally blessed with.
“Two beautiful little Chinese girls, named Lulu and Nana, came crying into the world as healthy as any other babies a few weeks ago. The girls are home now with their mom Grace and dad Mark,” he said in a He Lab-recorded statement.
The He Lab has made it clear that in the interest of the concerned family’s privacy, both Lulu and Nana are pseudonyms; it’s likely that the names JK gave for the parents are pseudonyms too.
He said that Grace started her pregnancy by regular IVF (In vitro fertilization) but with a difference, in that immediately after depositing Mark’s sperm into her eggs, he also sent proteins and instructions for a genetic surgery intended to purge the genes that would make them vulnerable to HIV.
“When Lulu and Nana were just a single cell, this surgery removed the doorway through which HIV enters to infect people,” JK said.
Before returning the twins to Grace’s womb a few weeks later, JK and his team did a full genome sequencing to check how the surgery had gone and found that the results were as satisfactory as expected.
The twins’ genomes were deep sequenced again after birth and again everything was found to be exactly as intended.
“No gene was changed except the one to prevent HIV infection,” said a proud JK.
He went on to say that the birth of the twins has given Mark – an HIV patient – “a reason to live, a reason to work, a purpose.”
Discrimination in many developing countries makes matters worse for HIV positive and AIDS sufferers, JK explained.
“Employers fire people like Mark, doctors deny medical care, and even forcibly sterilize women,” he said.
He reasons that protecting a child from “a lethal genetic disease like cystic fibrosis or from a life threatening infection like HIV” through gene surgery not only gives the child an “equal chance at a healthy life” but also heals the whole family.
To make the surgery possible, JK used a powerful gene-altering tool called CRISPR-cas9 – a technology that can effectively remove an undesired disease-causing gene, or add one that is needed, by removing or replacing sections of the DNA as the case may be.
What’s important to note is the fact that there is no independent substantiation of JK’s claim, at least not yet, and neither has the findings been published in any scientific journal where it can be scrutinized by experts in the field.
The announcement has come as a shock to many in the scientific community; in fact, several scientists have been pretty vocal in their condemnation of JK’s genetic experiment on humans.
One of them is Dr. Sarah Chan, a bioethicist at the University of Edinburgh, who says that the experiment is of “of grave ethical concern,” if there was any truth in the claims.
“Whether or not the veracity of these reports is eventually borne out, making such claims in a way that seems deliberately designed to provoke maximum controversy and shock value is irresponsible and unethical,” The Guardian quoted Dr. Chan as saying.
“The claim made by those responsible for the research is that the babies have been genome-edited in an attempt to make them immune to HIV,” she added.
“The lifetime risk of contracting HIV is extremely low in the first place; there are other means of prevention and it is no longer an incurable, inevitably terminal disease,” said Dr. Chan, adding that “putting these children at such drastic risk for such a marginal gain is unjustifiable.”
Calling the experiment “unconscionable,” Dr. Kiran Musunuru – a gene-editing expert at the University of Pennsylvania – said that the human experiment was “not morally or ethically defensible.”
“If true, this experiment is monstrous. The embryos were healthy – no known diseases,” Prof. Julian Savulescu, an expert in ethics at the University of Oxford, was quoted by BBC as saying.
“Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer,” Savulescu said.
“There are many effective ways to prevent HIV in healthy individuals – for example, protected sex. And there are effective treatments if one does contract it,” the Oxford professor added.
He also said that “this experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.”
Dr. Eric Topol, head of the Scripps Research Translational Institute in California, said that the experiment was “far too premature,” according to The Associated Press.
“We’re dealing with the operating instructions of a human being. It’s a big deal,” Dr. Topol said.
Meanwhile, known geneticist and molecular engineer, George Church, from Harvard University in Cambridge, Massachusetts, has justified Jiankui’s initiative toward preventing HIV – “a major and growing public health threat.”