Crispr babies: How a rogue scientist took the role of God

On November 25th, 2018, Henry Greely turned on his computer to find an email which read "Crispr babies". The mail was a link to a story at the MIT Technology Review outlining how a Chinese scientist, He Jiankui, had used the Crispr gene-editing technology to edit two babies. Greely knew immediately that this was the biggest story in genetics since the cloning of Dolly the sheep back in 1996. The two babies – nonidentical twin girls – were the first people ever born using the Crispr method. Jiankui was later prosecuted and now serves a three-year jail sentence.

Crispr (Clustered Regularly Interspaced Short Palindromic Repeats) is a new biotechnology that allows the editing of genes, with applications including potentially curing genetic conditions such as sickle cell anaemia and cystic fibrosis. The technology is considered by many to be one that could have the most impact on humanity over the coming decades, especially because of its ease of use and low cost point, which continues to fall.

Greely, director of the Stanford Center for Law and Biosciences at Stanford University, with a special interest in legal issues around the biomedical sciences, was fascinated by the story because of the muddy ethical issues that surround Crispr. In his new book, Crispr Babies, he discusses the Chinese experiment and considers the lessons that can be drawn from this kind of human DNA editing – germline editing – the kind where genetic effects are passed on from one generation to the next.

You write in your book about the lack of transparency around this case. What do we know and what don't we know?
The scariest thing about writing this book was that I became sure of almost nothing in terms of what actually happened. The testimony we have – the evidence we have – all comes from Jiankui and his colleagues, and from around four press releases issued by the official Chinese news agency. And really, that's about it.

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That’s completely different to how we would usually have an understanding of science in the West, where everything is completely transparent. Western science is proud of its transparency, its openness, its publication and review processes. But regarding the case of the world’s first Crispr babies, we are really in the dark.

Do we know where these babies are now? Is there any kind of medical monitoring of them?
No, we don't. It's all under the control of the Chinese government, and they are saying nothing. Part of that, I think, is in an effort to preserve the babies' privacy, which I applaud. But one could publish details about their health anonymously.

You can do that in a country of 1.3 billion people without revealing which two of those 1.3 billion people they are. It’s similar to what we’ve seen more recently with the WHO’s investigation into the source of the Covid pandemic. The Chinese government are just not very transparent.

How is Crispr being regulated now?
The general consensus, in law, is that Crispr doesn't present any different issues compared with other kinds of high-tech medical interventions. The main legal issues are around safety. But there are also regulatory issues such as justice to consider. For example, some of these gene therapies that have been approved are being sold for $2 million a shot, meaning access is limited to the super-wealthy.

All of the major countries conducting work using Crispr regulate it as a medicine. But there are some detailed differences about how it gets regulated in different countries.

The US, via the FDA (Food and Drug Administration) does it somewhat differently from the European Medicines Agency, which covers the EU, and now the UK have their own regulatory system since they're outside the EU. China has its own regulatory system, too. In general, although there is some regulation on a national level, we are completely lacking a unifying international treaty on the issue.

Do you think Crispr is a dangerous technology?
It's quite easy to have a scary conversation around this, so taking a close look at the ethical considerations is important. I think science is a tool like any other – you need to be careful about how to use it. Everything can be used for good purposes or bad purposes.

If you use it for good purposes, you can screw up and make a mistake, and it can go wrong. I think we need to think about these kinds of outcomes in advance. But I also think we really need to do a better job of monitoring what happens with our new technologies.

At the moment we just put new technologies out there and then we don’t really pay attention to them. That’s a major issue. But overall Crispr holds a lot of hope for relieving human suffering, and also for planetary sustainability via gene editing in plants.

What about the damage to the reputation of scientists?
There is outrage over the risk the Chinese scientists put these babies under and definitely damage to the reputation of science. Jiankui played out the Frankenstein myth.

He is Victor Frankenstein, this guy that nobody knows about, who is doing something in secret, who does something that shocks the world, and does it apparently for no good reason. We probably have 100 movies coming out every year on some variation of that theme.

But it is not my experience that this kind of rogue behaviour happens very often in science. In fact, scientists need to be able to apply for grants, they need to achieve tenure, they want to win the Nobel Prize. They are constrained by lots of things that forbid them from doing crazy stuff, and also in part because science these days tends to cost a lot of money.

What can science and scientists do to improve their reputation when a rogue behaves like this?
I argue that science needs to be a little more humble, at least in its relationship to societies, and one big part of that is that I think is scientists need to be more open about what they're doing, particularly if what they're doing is going to shock people. You need to prepare the world for what you have planned.

We need science. But science needs to be more careful about making sure it understands that it needs society too. Sometimes science likes to think that it should be free to do anything and that it is its own international world – its own international government – but it needs to be subject to democratic oversight. Science cannot be divorced from its cultures, and scientists need to acknowledge that more often and more sincerely. But I have no doubt that as a whole the world is in much better shape because of science.

Crispr People: The Science and Ethics of Editing Humans by Henry T Greely is published by MIT Press

Dr Conor Purcell writes about science, society and culture