EXCLUSIVE I went to prison for genetically editing human babies - here's why I'd do it again in a heartbeat

Daily Mail​

5 days ago

When He Jiankui stood before a court in 2019, he did so accused of a crime no one in history had ever committed.
The year prior, Mr He had triumphantly announced the birth of the world's first gene-edited babies - a pair of twins named Lulu and Nana.
For that crime, Mr He got three years in jail, a fine of three million Chinese Yuan (£310,000), and instant worldwide infamy.
However, out of prison and back in the lab, Mr He has told MailOnline he would do it all again if he had the chance.
Speaking from his home in Beijing, where he has remained since Chinese authorities confiscated his passport, he explained his plans to start a new research lab in the US.
Totally unapologetic and unrepentant, his ambition seems to have only grown following his years of incarceration.
Mr He said: 'When I think about the long term, I would like embryo gene editing to be as popular as the iPhone.
'It's going to be affordable to most families. So we will see the majority of babies born having gene editing, because doing so will make them healthy.'
Throughout 2018, Mr He and his colleagues took sperm and eggs from eight couples who had tested positive for HIV and used these to create embryos with IVF.
In each of these embryos, he edited a gene to make the children resistant to HIV.
He then took those gene-edited embryos and inserted them into women's wombs, where they matured into healthy, living foetuses.
In two cases, this resulted in a pregnancy - one leading to the twins Lulu and Nana, who were born in November 2018, and another leading to a third child born later.
In doing so, Mr He not only violated China's criminal law prohibiting human genetic engineering, but went well beyond the limits of ethical research.
While Mr He had, and still has, his supporters, he was also criticised by researchers around the world who deemed the work premature, irresponsible, and unjustified.
Scientists from around the world pointed out that Mr He had made no attempts to ensure that these methods were safe or effective.
With our current level of understanding of these techniques, we simply do not know whether what Mr He did will cause lifelong health issues.
Who is He Jiankui?
He Jiankui is a disgraced Chinese scientist who was jailed for three years in 2019 after announcing he had genetically engineered human babies.
Although this was initially met by some as a major scientific breakthrough, criticism followed as the details of his experiments emerged.
Mr He had forged ethical review documents, falsified blood tests, hidden from government scrutiny by personally funding the research, and misled doctors into unknowingly implanting gene-edited embryos.
Following his release from jail, his application to work in Hong Kong was rejected after it emerged that he lied on his application form.
Although Mr He told MailOnline he is in regular contact with the parents of all three children, there is no way to confirm that they really are as healthy as he claims.
Likewise, experts in HIV argued that there was 'zero risk' of the children being infected with HIV in the first place, provided the mother took widely available and provenly safe antiretroviral therapy.
Dr Kathy Niakan, embryo research group leader at the Francis Crick, said at the time: 'This would be a highly irresponsible, unethical and dangerous use of genome editing technology.
'Given the significant doubts about safety, including the potential for unintended harmful side-effects, it is simply far too premature to attempt this.'
Even among researchers who support research into embryo editing, Mr He was slammed for potentially undermining years of work spent convincing the public that these methods could be done ethically.
Professor Darren Griffin, a geneticist from the University of Kent, said at the time that Mr He had taken trust in science 'back to the Stone Age'.
As the trial took place, it also emerged that Mr He had taken a number of highly unethical and often illegal steps to hide his research from prying eyes.
Mr He and his colleagues were accused of forging ethical review documents, misleading doctors into unknowingly implanting gene-edited embryos.
How did He Jiankui genetically edit babies?
Throughout 2017 and 2018, Mr He recruited eight couples in which the male was HIV positive.
He took sperm and eggs from these couples and created fertilised embryos.
Using CRISPR gene editing technology, Mr He altered a gene that would give the baby protection against the HIV virus.
He then took these embryos and implanted them into their mothers' wombs.
Two women then became pregnant and gave birth to three babies, including a pair of twins.
Since HIV positive parents are not allowed to receive assisted reproduction, he asked others to take the volunteers' blood tests on their behalf to avoid regulations.
It was also revealed that he had used private funds from his two biotech companies to finance the research personally to avoid scrutiny.
Despite all that, Mr He, who requested he be introduced as a 'pioneer of gene editing', appeared confused by the criticism.
'I have three babies born now, and the two families thanked me. They thanked me for what I did for them, for their family. They have a healthy baby and a happy life now,' said Mr He.
'The three babies are normal, healthy, free of HIV. They are living a happy life. That's the proof that what I've done is ethical.
'People don't want to get involved with me because I have a bad name. But actually, nothing happened. There's no bad result, I'm not breaking the law.
'I do everything legally, I do everything ethically. So nothing bad has happened yet.'
Although Mr He said he is 'actively' petitioning the Chinese government to legalise embryo gene editing, he doesn't want this to be totally unregulated.
In 2018, He Jiankui announced that he had used CRISPR-Cas9 to edit the genes of human babies in an attempt to make them HIV resistant. This was a violation of China's prohibition on human genome editing
In fact, he is staunchly opposed to any editing which tries to enhance intelligence, appearance, or create 'super-soldiers' - adding that these should be 'permanently banned'.
In Mr He's view, genetically editing embryos is simply the obvious solution to the health problems affecting the world.
'10 years ago, my dream was to be a physicist - to be Einstein the second,' said Mr He.
'But then, when I went to the US, my grandfather died of some disease. It would not be a big problem today, but 15 or 20 years ago in China, the medical conditions were not so good.
'I gradually realised that all the problems of physics have mostly been solved, but there are lots of things we could do in human biology and human health.'
Mr He describes this as a 'transition moment' in his life, after which he became unflinchingly dedicated to his goal of bringing embryo gene editing to the masses.
Gene therapy works by fixing or replacing faulty genes to prevent the body from getting sick or make it able to fight off a disease.
This treatment has a lot of promise for tackling conditions such as cancer, Alzheimer's, cystic fibrosis, heart disease, diabetes, haemophilia and AIDS.
Why is editing human embryos controversial?
He Jiankui's gene editing experiments were roundly criticised by the scientific community, even by those who support embryo research.
There is not enough evidence to show that these methods are safe or effective, nor are the potential side effects understood.
Mr He made little effort to ensure that the procedure would be safe, and his published results were not peer-reviewed.
The procedure was also entirely unnecessary to prevent HIV infection, since a regular course of antiretroviral medication would have the same effect.
The drawback is that a single course of gene therapy can be prohibitively expensive, with treatments sometimes costing upwards of £3 million per dose.
However, making those same genetic changes on a single-cell embryo before someone is born requires only tiny amounts of medicine.
In the future, Mr He said he wants these kinds of preventative treatments to become the norm for the vast majority of children.
'I see this happening very soon, maybe in 10 years,' said Mr He.
'The reason is that it's affordable. The current gene therapy is super expensive. No one can afford it. It's a ridiculous price, and it's not benefiting people at all.
'But embryo gene editing, it only costs a few thousand dollars, so most families can afford it.
'Embryo gene editing is the future. It will get cheap, maybe not as cheap as an iPhone, but maybe as cheap as 10 iPhones.'
In service of that goal, Mr He said he is opening a new research lab in Houston, Texas, where he will pursue embryo gene therapies.
Mr He said he already has two American researchers lined up to start the lab in early August this year.
He insists that there will be 'no pregnancies' and no gene-edited babies born in Austin.
However, the same secrecy that plagued his earlier research once again threatens to cast a shadow over this latest project.
Mr He refused to disclose any details about the lab, including the names of the researchers or the two Chinese 'colleagues' from his earlier projects that are overseeing the lab on his behalf.
Mr He would not even name the disease that the lab is supposed to be investigating, other than to say it was a rare muscular disease.
This time around, his sources of funding are also even more obscure.
Mr He said he has received private donations from an American family suffering from the unnamed disease, as well as from some 'Southeast Asian families'.
He also released a 'meme coin' cryptocurrency called GENE, which supposedly provides direct funding for the research.
He claims that these measures are necessary to preserve his employees' safety, fearing attacks on the laboratory if the location were revealed.
This comes after a supposed attack by a group of rivals last September, which supposedly led to Mr He needing hospital treatment.
However, physical assaults are only the beginning of Mr He's troubles.
In addition to the three million Chinese Yuan he was fined, he now says that the local government of Shenzhen is demanding the repayment of a further five million Chinese Yuan (£500,000) lent to Mr He to start a research lab.
Mainstream funding bodies have also shunned his research, leading to his application for funding being rejected by the Muscular Dystrophy Association in 2024.
Mr He said that researchers have declined to work with him, university professors won't answer his emails, and potential collaborators have refused to be associated with him.
Although Mr He said these challenges make him 'angry', he remains characteristically undaunted.
'I think it's totally fair. It's fair, because every pioneer, every prophet, has to serve those difficulties and until one day they have been fully recognised by society,' said Mr He.
'People only believe what they want to believe. So, only when those old people die, the young people will accept it. It's natural.'
As for why he is so willing to endure these hardships, Mr He appears to be caught between two conflicting motivations.
At times, he seems genuinely concerned for those he sees as needlessly suffering from curable conditions, and outraged that gene therapy is only affordable for the super-rich.
But at others, his underlying drive seems to be nothing more than a simple desire for fame.
Mr He is obsessed with social media, in particular X, where he has amassed 135,000 followers.
He claimed to be the 'most influential biologist on X' and boasted that he had 'more followers than Nobel Prize winners' while bitterly complaining that he had been banned from social media in China.
He candidly told MailOnline: 'One side, I am always looking for fame. I want my name to be put into history.
'Second, I want to bring glory to my country, China. I want to make it so the Chinese people feel proud of me.'
Although he claims that he only wants fame 'on the condition that it's better for the patient', his focus always seems to be on proving to the world that he was right.
Asked whether going to jail, facing millions in fines, and becoming an outcast from the world of science was worth it, Mr He replied without hesitation: 'Of course. That's worth a Nobel Prize.'
And despite his criminal record and lax attitude towards medical ethics, Mr He doesn't see this as an unreasonable goal at all.
Comparing himself to the inventor of IVF, Sir Robert Geoffrey Edwards, Mr He said: 'When Edwards was given the Nobel Prize in 2010, there were already five million IVF babies born all over the world.
'So when we have five million babies born with gene editing, they will give me the Nobel Prize.'
'One day, when China has changed its law, I will have a Nobel Prize.'
WHAT IS CRISPR-CAS9?
Crispr-Cas9 is a tool for making precise edits in DNA, discovered in bacteria.
The acronym stands for 'Clustered Regularly Inter-Spaced Palindromic Repeats'.
The technique involves a DNA cutting enzyme and a small tag which tells the enzyme where to cut.
The CRISPR/Cas9 technique uses tags which identify the location of the mutation, and an enzyme, which acts as tiny scissors, to cut DNA in a precise place, allowing small portions of a gene to be removed
By editing this tag, scientists are able to target the enzyme to specific regions of DNA and make precise cuts, wherever they like.
It has been used to 'silence' genes - effectively switching them off.
When cellular machinery repairs the DNA break, it removes a small snip of DNA.
In this way, researchers can precisely turn off specific genes in the genome.
The approach has been used previously to edit the HBB gene responsible for a condition called β-thalassaemia.