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China scientist defends gene-editing babies as trial paused
HONG KONG, Nov 28, 2018 (BSS/AFP) – The Chinese scientist who claims to
have created the world’s first genetically-edited babies defended the highly
controversial procedure Wednesday, but announced a halt to the trial
following an international outcry.
He Jiankui told a packed Hong Kong biomedical conference he was “proud” to
have successfully altered the DNA of twin girls born to an HIV-positive
father, an apparent medical breakthrough.
But details of the experiment, which has not been independently verified,
triggered an immediate backlash, with experts denouncing He’s work as an
ethical “mess”.
“The clinical trial was paused due to the current situation,” said He.
“For this specific case, I feel proud, actually, I feel proudest.”
The university professor said the twin girls, born a few weeks ago, had
their DNA altered to prevent them from contracting HIV. Eight volunteer
couples — HIV-positive fathers and HIV-negative mothers — signed up to the
trial, with one dropping out before it was paused.
He said there had been “another potential pregnancy” involving a second
couple, but when questioned further agreed it had been a chemical pregnancy –
– a term referring to a very early miscarriage.
The experiment has prompted heated debate among scientists over the risks
involved. Editing human embryos can create unintended mutations in other
areas — so-called “off-target effects” — which can have an impact through
the lifetime, experts warned.
“The volunteers were informed of the risk posed by the existence of one
potential off-target and they decided to implant,” He said Wednesday, as he
was bombarded with questions about the trial.
He also said he had personally paid for most of the patients’ medical
expenses, and that his university in the southern Chinese city of Shenzhen
had been “unaware of the study’s conduct.”
Southern University of Science and Technology distanced itself from He,
saying he had been on unpaid leave since February and had “seriously violated
academic ethics”.
– ‘Backward step’ –
Organisers of the Second International Summit on Human Genome Editing also
said they had not known about He’s work.
Conference moderator Robin Lovell-Badge said He’s trial was a “backward
step” for the science industry, but described the babies’ birth as
“momentous” nonetheless.
“This is an example of an approach that was not sufficiently careful and
cautious and proportionate,” he said.
“Clearly however… it is a momentous point in history.”
Summit chair David Baltimore, a Nobel laureate, said there had been “a
failure of self-regulation by the scientific community”.
Antonio Regalado, senior editor for biomedicine for MIT Technology Review
— the publication which first highlighted the trial on Sunday — said He’s
talk was “ethically a half-baked mess”.
He, who was educated at Stanford University, said the twins’ DNA was
modified using CRISPR, a technique which allows scientists to remove and
replace a strand with pinpoint precision.
But the co-inventor of CRISPR condemned He’s trial as dangerous and
unnecessary.
“My concern is that this experiment really shouldn’t have happened,” said
Feng Zhang told reporters at the conference. “What he has done was not
science.”
– ‘Resolutely oppose’ –
Gene editing is a potential fix for heritable diseases but it is
extremely controversial because the changes would be passed down to future
generations and could eventually affect the entire gene pool.
In many countries the editing of human DNA is tightly controlled.
He’s experiment would be prohibited under Chinese laws and regulations,
according to state media CCTV, citing remarks by deputy minister of China’s
Ministry of Science and Technology Xu Nanping.
Specifically, Chinese laws limit in vitro human embryonic stem cell
research to a maximum of 14 days, said Xu.
But former Chinese health ministry official Qiu Renzong said lax
regulations in China mean that scientists who break the rules often face no
punishment.
China’s National Health Commission ordered an “immediate investigation”,
the official Xinhua news agency reported, while the Shenzhen hospital meant
to have approved the research denied its involvement.
A union of Chinese scientists issued a statement saying it “resolutely
opposes so-called scientific researches and biotech applications that violate
the spirit of science and ethics,” Xinhua said.
There is a history of fraud within China’s academic community — including
a scandal last year that led to the withdrawal of 100 “compromised” papers.
He has not released the identities of the participants of his trial.
“It would be really unfortunate… to have the world looking at the first
two genome-edited children because think of the pressure that’s going to put
them under,” said Lovell-Badge.
But University of Massachusetts Lowell assistant professor Nicholas Evans
tweeted: “(D)on’t get me wrong, privacy is vital here. But I am concerned
that no one is ever going to get to independently corroborate the story.”
BSS/AFP/RY/1555 hrs