Birth of genetically engineered twins resistant to HIV causes global outrage

WHY THIS MATTERS IN BRIEF

Imagine growing old and never experiencing what it’s like to be ill because you were genetically engineered in the womb to be resistant to all known pathogens and viruses, technology is starting to make that a reality.

 

A little while ago I wrote about and discussed how scientists were using gene editing, or genetic engineering, whichever term you prefer, to cut HIV out of living cells, eradicate invasive and disease carrying species such as mosquitos and rats, cure inherited genetic diseases in living human patients and edit out inherited genetic diseases in babies, and create new strains of E. coli bacteria that are resistant to every known virus on Earth. And that’s before I discuss how Harvard University and gang are laying the foundations for one day building the world’s first fully artificial human – designer or not.

 

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While all these use cases have their pros and cons, both medically but also ethically, the one that caught my eye the most as a futurist was the latter one – the ability to edit an organisms genome to make them resistant to every pathogen on Earth. In short this is the use of gene editing tools to make “super organisms” that never get ill – and just imagine what that could do for the human race if it was ever applied to humans.

Now though, thanks to Chinese researchers we don’t have to imagine it, because they’ve gone ahead and done it, and by done it I mean genetically engineered two babies that are resistant to several diseases, from birth. And the entire world is now up in arms, quite rightly in my opinion, about the ethical and moral implications of the breakthrough and the use of CRISPR technology to create what is nothing less than the world’s first “ultimate” designer baby must have.

When Chinese researchers first edited the genes of a human embryo in a petri dish back in 2015 it sparked global outcry and pleas from scientists not to make a baby using the technology – at least until the world had managed to debate and agree a way forward.

 

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It was the invention of CRISPR, which is a cheap and easy to deploy gene editing tool, that made the birth of genetically engineered humans in an In Vitro Fertilization (IVF) center a theoretical possibility.

According to Chinese medical documents posted online this month (here and here), a team led by Dr. Jiankui He, a professor at the Southern University of Science and Technology, in Shenzhen, recruited several couples in an effort to create the first gene-edited designer babies. They planned to eliminate a gene called CCR5 in hopes of rendering the offspring resistant to HIV, Smallpox, and Cholera, and the documents describe a study in which CRISPR is used to modify human embryos before they are transferred into women’s uteruses.

In a video, posted below, He describes the procedure as “having removed the doorway through which HIV enters,” and said that one of the pregnancies had been successful and that healthy twin girls named Lulu and Nana had been born “a few weeks ago.” At the time of writing He’s claims have neither been independently verified nor peer-reviewed.

 

The video that sparked global out cry, and this just the beginning
 

Editing the genes of embryos intended for pregnancy is banned in most counties, including the US, and in the UK, the editing of embryos is allowed for research purposes only with strict regulatory approval. It’s also unknown whether the procedure is safe or, if used in pregnancy, whether it can have unintended consequences for the babies later in life or for future generations.

In a statement posted on Tuesday, after the announcement and the uproar, China’s National Health Commission said that it had “immediately requested the Guangdong Provincial Health Commission to seriously investigate and verify” the claims made by He Jiankui.

 

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The statement follows moves by the Chinese hospital named in He’s ethical approval documents, Shenzhen Harmonicare Women’s and Children’s Hospital, to distance itself from involvement in his procedures.

“We can ensure that the research wasn’t conducted in our hospital nor were the babies born here,” said a hospital representative. The hospital did however confirm that two of the doctors named in He’s documents still work at the hospital and suggested that an internal investigation was underway.

An initial investigation by the hospital said that signatures on He’s ethics review form are suspected to be forged. The hospital has never convened an ethics committee meeting on it, according to a statement on its WeChat account, and the facility will ask police to intervene and investigate it and hold related people accountable by law.

The Shenzhen Health and Family Planning Commission meanwhile denounced the legitimacy of the hospital ethics committee and the review process that approved the application. It confirmed that an investigation was launched Monday to “verify the authenticity of the ethical review of the research reported by media.”

 

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Furthermore, and oddly, He’s University, Southern University of Science and Technology, said in a statement that he has “been on leave since February 1st 2018.”

“The research work was carried out outside the school by Associate Professor He Jiankui. He did not report to the school or the department of biology. The university and the biology department are not aware of it,” the institution said, adding that “the Academic Committee of the Department of Biology believes that it seriously violates academic ethics and academic norms.”

Meanwhile an unprecedented joint statement issued by more than 120 Chinese scientists on the Chinese social media site Weibo condemned the research.

“The medical ethics review exists in the name only. Directly experimenting on human is nothing but crazy … as soon as a living human is produced, no one could predict what kind of impact it will bring, as the modified inheritable substance will inevitably blend into human genome pool,” they wrote, adding that the trial is a “huge blow” to the reputation of Chinese biomedical research. “It’s extremely unfair to Chinese scientist who are diligent, innovative and defending the bottom line of scientific ethics.”

 

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Julian Savulescu, director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford, described the alleged births as “genetic Russian Roulette.”

“If true, this experiment is monstrous,” he said. “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. 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,” Savulescu added.

Joyce Harper, a professor in genetics and human embryology at the Institute for Women’s Health at University College London, described the alleged research “premature, dangerous and irresponsible,” calling for public debate and legislation.

“Before this procedure comes anywhere near clinical practice, we need years of work to show that meddling with the genome of the embryo is not going to cause harm to the future person,” she said in a statement.

 

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Despite ethical concerns in the West, a recent study suggested that the Chinese public is broadly in favour of using gene editing provided it’s for medical purposes only. An online survey conducted by Sun Yat-Sen University in Guangzhou found that more than two-thirds of the 4,771 people surveyed, 575 of whom reportedly have HIV, supported its use in treating diseases, according to the state-run tabloid Global Times.

“[Chinese people] have a high willingness to use of gene in disease prevention and treatment,” Liang Chen, a professor at Sun Yat-Sen University was quoted as saying. “This suggests that the research of gene editing in China not only has a promising potential, but also is responding to the public’s needs.”

However, while the furore about He’s work and the prospect of “unethical” designer babies will long outlive this post, and while the world will continue to debate how and when this and other powerful gene editing tools are used, the fact remains that Pandora’s Box has been opened and there will be plenty of people who want to delve into it and experiment with what’s inside – for both good and bad reasons.

 

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And again this is another prime example of just how unprepared the world is for some of these incredibly powerful emerging technologies, and lest we forget gene editing is just one of the hundreds of such technologies that I track and report on on this site, and if you’d like to see another 170 then just check out my latest Griffin Emerging Technology Starburst.

Are we prepared for what’s coming? Absolutely not – and my feeling is that in many cases we are the equivalent of babies playing with fire, and it’s high time we grow up and try to get our collective heads around just what all these technologies really mean for the future of humanity and society well ahead of time, and not when Pandora’s Box is already open for business.

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