Controversial CRISPR Babies

11 December 2018

Interview with 

Anna Middleton, Wellcome Trust

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The world of genetics has been rocked this month, with the announcement from a scientist called He Jiankui at China’s Southern University of Science and Technology, in Shenzhen, that he’d been using the experimental DNA editing system, called CRISPR, on human embryos. The modified embryos were implanted and a pair of twins carrying the genetic changes have allegedly been born. If this is true, it’s a monumental milestone but has totally run against what the community considers safe and ethical. Now, the scientist involved has since vanished, and his website has been taken down. So did it really happen, and what’s the fallout going to be? Georgia Mills caught up with Anna Middleton - head of society and ethics research at the wellcome genome campus in Cambridge...

Anna - This has not been published in a peer reviewed journal so we're not entirely clear if it's true or not, but I was at the Hong Kong summit where it was announced and it seems credible that it may have actually happened. Of course, then, the next questions are, well, how could this possibly happen? Because the implantation of edited embryos is illegal in many countries across the world and it just raises so many ethical questions. My mind is absolutely blown with questions for these researchers as to how they did this and how they got away with it.

Georgia - What kinds of things would you like to ask them? And I suppose where have they crossed the line?

Anna - Well I did actually get a chance to ask them. So I stood up and said ‘Could you tell us about the consent process?’. Because the first point in any research like this is to understand if the research participants themselves actually understand what they're getting into. And it seems from the consent form, which has actually now disappeared from the internet but we've managed to have a look at it before it went, advertised the research project as a vaccination against HIV.

So it wasn't being touted as a project about editing of embryos - in the small print the embryos were mentioned. The only consent form that’s actually available that we've seen is in English and the participants, as far as I understand, were Chinese; and the form is full of legal jargon and scientific jargon and if you put it through a readability school you'd need at least a degree to understand it in written English. 

I think the first point is we could probably say with confidence that the participants didn't understand what they were taking part in. Consent - that's the first issue. Research into editing of embryos around the world isn't illegal, but what the common kind of guidance is that we don't implant them to lead up to pregnancy and the embryos are destroyed at the 14 day kind of mark. To actually implant them with the intention of leading to pregnancy is highly unethical, really because we don't fully understand the downstream effects of this editing and whether there could be extreme harm induced - particularly in these embryos. You know, you go to edit one gene, and other genes you inadvertently edited at the same time and all the science in this has not been fully completed yet.

Georgia - Right, and I suppose doing something  so dramatic you'd expect it to be for something lifesaving in the embryo, but this was something different.

Anna - Yes absolutely. So these embryos were completely normal up to the point that they were edited - you know, it wasn't like he was trying to get rid of a really serious genetic disease that the embryos already had. They were completely normal.

Georgia - What was the reaction like in the room when this got announced?

Anna - The reaction was palpable. There was a gasp. There was a silence. People were just shocked. It was really incredibly powerful and the sort of elite of medicine ethics and science were there in the room, and there was just a sense of absolute disbelief. How could he do this? Which research ethics committee approved this? Has he got ethics approval? How is this funded? Where was this done? And it turns out there's questions about all of those things now.

Georgia - Do you think this is gonna be the tip of the iceberg? You know, is CRISPR a runaway train that we're just not going to be able to stop?

Anna - That's the big fear and if you look at the rogue stem cell clinics that are popping up around the world - where the earth is promised to terminally ill people, ‘come and have a stem cell transplant!’ And you know lots of money is exchanged, and this is not leading to treatments or cures for people. It feels as if there could be the same industry around editing of embryos. But having said that, if we think about the process that you actually have to go through at the moment it's an IVF process, and that's not a straightforward process with a high very high success rate. So I don't know if there's going to be a mass market for this at the moment.

Georgia - Any idea what's going to happen to the scientist?

Anna - No, and from what I understand he's gone into hiding and the family has gone into hiding. We also understand there's another family with a pregnancy on the way, but of course they've all signed nondisclosure agreements so we'll probably never see them. Who knows what will happen to this scientist. I understand he has a large amount of cash backing him. So I don't know, maybe he'll just disappear into the commercial world and keep delivering his services - who knows. Depends on what the Chinese government decide to do.

Georgia - So this is a really liminal moment then; I guess 5-10 years from now, where do you think we'll be?

Anna - I wonder whether this is going to really push forward two things. One is tightening up the regulation. For those countries that don't have legal frameworks, maybe they'll put in place legal frameworks. But also I wonder whether the disease and patient community will push forward with their agenda on this.

What was really exciting to see was the Sickle Cell community and the Duchenne muscular dystrophy community at the conference, and you know they were saying look, we want somatic gene therapy. We want to understand how editing of embryos can help us. And it may well be, like with mitochondrial donation, they'll push for access to the services that they want and certainly in the UK that would require a change in the law. But that may be something that we start to work towards. I don't know but I think it will, you know, really catalyze conversations about this which is a really good thing.

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