Doubts and outrage over genetically edited babies claims

Organisation: Position: Deadline Date: Location:
Jiankui

Associate Professor He Jiankui

Significant doubts have been expressed,  as well as international outrage, over unverified claims from a Chinese scientist that he has helped make the world’s first genetically edited babies, reports BBC News. Professor He Jiankui says the twin girls, born a few weeks ago, had their DNA altered as embryos to prevent them from contracting HIV. But, the report says, the claims are unverified and have sparked outrage from other scientists, who have called the idea monstrous. Such work is banned in most countries.

Gene editing could potentially help avoid heritable diseases by deleting or changing troublesome coding in embryos. But experts worry meddling with the genome of an embryo could cause harm not only to the individual but also future generations that inherit these same changes. And many countries, including the UK, have laws that prevent the use of genome editing in embryos for assisted reproduction in humans. The report says scientists can do gene editing research on discarded IVF embryos, as long as they are destroyed immediately afterwards and not used to make a baby.

But He, who was educated at Stanford University in the US and works from a lab in the southern Chinese city of Shenzhen, says he used gene-editing tools to make two twin baby girls, known as “Lulu” and “Nana”. The report says he claims, in a video, to have eliminated a gene called CCR5 to make the girls resistant to HIV should they ever come into contact with the virus.

He says his work is about creating children who would not suffer from diseases, rather than making designer babies with bespoke eye colour or a high IQ. “I understand my work will be controversial – but I believe families need this technology and I’m willing to take the criticism for them,” he says in the video.

However, the report says, several organisations, including a hospital, linked to the claim have denied any involvement. The Southern University of Science and Technology in Shenzhen said it had been unaware of the research project and will now launch an investigation.

And other scientists say if the reports are true, He has gone too far, experimenting on healthy embryos without justification. Professor Robert Winston, emeritus professor of fertility studies and professor of science and society at Imperial College London, said: “If this is a false report, it is scientific misconduct and deeply irresponsible. If true, it is still scientific misconduct.”

Dr Dusko Ilic, an expert in stem cell science at King’s College London, said: “If this can be called ethical, then their perception of ethics is very different to the rest of the world’s.” He argues that HIV is highly treatable and that if the infection is kept under control with drugs, then there is almost no risk of the parents passing it on to the baby anyway.

Professor Julian Savulescu, an expert in ethics at the University of Oxford, is quoted in the report as saying: “If true, this experiment is monstrous. The embryos were healthy – no known diseases. 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. This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.”

Scientists say baby gene editing may one day be justifiable, but that more checks and measures are needed before allowing it. Dr Yalda Jamshidi, an expert in human genetics at St George’s University of London, said: “We know very little about the long term effects, and most people would agree that experimentation on humans for an avoidable condition just to improve our knowledge is morally and ethically unacceptable.
“Whether the results stand up to scrutiny or not we need as a society to think hard and fast about when and where we are willing to take the risks that come with any new therapeutic treatment, particularly ones that could affect future generations.”

BBC News report
Video


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