Robin Lovell-Badge: Who should decide what is allowed when it comes to genome editing?

Robin Lovell-Badge, image courtesy of the Francis Crick Institute

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Professor Robin Lovell-Badge is the head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute, and one of the organisers of the International Summit on Human Genome Editing. And Robin was chairing the session at the previous summit in 2018 when Chinese researcher, He Jiankui, announced that he had used CRISPR/Cas-9 to edit the genome of three human embryos in an attempt to make them resistant to HIV. Not only that, but those three embryos were implanted and came to term, thus being the first ever ‘CRISPR babies’ to be born, much to the horror of the scientific community.

So when it comes to regulation and ethics approval, who does Robin think should get to make the decisions?

Robin: I've always been very consistent on this since I started talking about the subject, that it should not be left up to scientists or clinicians by themselves. It has to involve others, it has to involve other professionals, ethicists, people who understand regulation and governance, but also members of the general public.

Robin: It's really important that the members of the public get to know something about the technology and can discuss it properly amongst themselves with others, and then feedback into any policy decision about how this technology is regulated. That's true of the somatic genome editing as well as the heritable genome editing. I think, it’s really important to hear that.

Robin: Under what circumstances people might be okay with the use of the technology if it were shown to be safe? And of course, that's where we want to hear from the public, where they would draw the line, what might be acceptable, what might not?

Sally: What happens if the people that are involved in deciding whether they should be allowed... I mean, you are never gonna get a situation where everyone agrees, but if some countries agree and some countries don't, I imagine that cultural attitudes will have a huge bearing on all of this. What do you do?

Robin: That's a very good question, and it's a complicated one. So I was a member of the WHO Committee set up to look at the whole area of governance, and it's clear that you'll never come up with rules that are worldwide. I mean, it is so challenging to come up with any big international agreement on any topic. And this one in particular would be very, very difficult. Because there are some countries which would say point blank, "No, you shouldn't go anywhere near, for example, heritable genome editing, just no." Others would be more permissive to that.

Robin: So what we basically say is that it is up to each jurisdiction to come up with rules, but there have to be rules, and those rules have to be transparent to the scientist, the clinicians who might be doing the work. They also have to be transparent to the public living in those jurisdictions. And you can have - a whole variety of mechanisms can be used ranging from simple peer pressure, where it's other scientists, ethicists putting in their words, saying, "You shouldn't do this," or, "Maybe this will be allowed," to specific laws which could allow certain things and not others.

Robin: Many countries at the moment have a very simple ban on heritable genome editing. But the issue with having sort of simple bans is that they can be very difficult to change. So once you have a law, it can be very hard to change that law. It can take many years. So ideally what you want is regulation that's flexible, that can accommodate changes in the science and changes in public acceptance of what should be allowed or what shouldn't be allowed.

Robin: So more flexible regulations is a much better way of doing it, at least some people think. A simple ban on the use of a technology is never very constructive. It stops research, it stops people thinking about something, in my view, and that can be a problem sometimes because people have a false sense of security.

Robin: If they think, "Oh, this isn't allowed, therefore nothing's happening in this space," well that's not the case. And clearly it wasn't the case with He Jiankui in China. So JK, as we call him, announced to the world that he had edited the genome of two babies. So he used genome editing to mutate the CCR5 gene that encodes the receptor for the HIV virus with the aim of getting the children born HIV resistant.

Robin: So everyone had thought at the time, "Well, no one's gonna do it because everyone says it's unsafe," He went ahead and did it.

Sally: And that situation was done in spite of regulation, am I right in saying that it didn't follow the proper regulatory procedures?

Robin: Well, in China there were no laws against doing it, and that was one of the problems there. So, JK was put in prison for practising medicine without a licence. So they came up with some way of putting him in prison, but it wasn't actually for doing heritable genome editing.

Robin: In the UK, as in many other countries, there are specific rules which say: you cannot do this, you cannot do heritable genome alterations.

That was Robin Lovell Badge.