Jonathan Montgomery: How do we decide what science should and shouldn’t do?

Jonathan Montgomery talks to Tom Ireland about chairing the Nuffield Council on Bioethics

Not so long ago, the UK became the first country to approve the creation of 'three person babies' and already another genetic technique is in the news. Fast and accurate genome editing tools, such as the CRISPR-Cas9 system, are transforming many areas of biological research, but they have also raised concerns about possible future uses, including human germ line modification and ecological engineering.

The Nuffield Council on Bioethics was established in 1991 to look into growing public concern about technologies emerging in the life sciences, mainly in genetics and fertilisation. The council has since explored and advised on many topics, including 'naturalness' and science, neurotechnology, stem cell research, biodata, cosmetic procedures and, of course, genetically modified foods. We catch up with Jonathan Montgomery, who has chaired the council since 2012.

What is the purpose of the Nuffield Council on Bioethics?

The council was established at a time when there were twin concerns. The first, mostly coming from the US, was about medical power and medicalisation of things that weren't medicalised before. And then there was public concern about emerging technologies in science. The phrase to describe this around the time was 'the yuck factor'.

There was actually other apparatus in place to deal with the medical issues, so Nuffield was better placed to respond to public concern about emerging technologies. It was at a time when there was a greater awareness of what science could achieve, which also created greater scope for antipathy. We wanted to create a structure that could mediate those concerns.

A conservative bioethicist called Leon Kass coined the term 'the wisdom of repugnance' – meaning you shouldn't dismiss those public concerns. But just because someone doesn't like the idea of something doesn't mean we should pull the shutters down on it. Our job is to tease out the initial anxieties and see whether they can be addressed.

Some concerns will evaporate when you look into them. They might not be really true, or they might be based on mistakes, or fears that can be addressed through regulation. I don't think we would ever deny the existence of concerns, but we challenge them and test them. Then we see where that takes us in terms of recommendations to funders.

We are not so concerned with what individual scientist do. It's more about forming a collective idea of what is acceptable and what is not acceptable, which can move over time. It's not about trying to identify things that are never permissible.

Are scientists generally good at not crossing the line?

Nuffield was founded on the idea of 'science out of control', and regulatory capabilities not catching up with it fast enough, but I think scientists are as ethically literate as any professional group. I don't buy into the idea that there are mad scientists, unrestrained.

This idea that scientists are trying to get away with it the whole time is not my experience.

In this country, most scientists are working within structures where reputation is a significant factor, and they need to publish in places with quite high publishing standards. Most of the big funding bodies also try to fund both sides – both the research and understanding the research. I think here we have a good sense that if we want to get the most from the benefits of science, we also have to invest in understanding it fully.

With the issue of mitochondrial donation, the scientists played a very long game. As far back as 2009, they were flagging up papers, saying, "you need to know this is coming". They certainly weren't hiding it. That feels to me the norm in the UK rather than the exception, but not everybody would take that view.

Do commercial companies step closer to the line than academic researchers?
It depends on whether you mean in terms of things actually going wrong or people's perceptions. At the moment, there is very good evidence that in the UK the public is suspicious of commercial enterprises, whether they are in health or in science. That's not true in the US, where if anything things are the other way round – people don't trust what government does, whereas they don't mind if it's done for profit.

However, it is certainly true that here there is a distrust of the profit motive. I'm less clear whether there is a pattern in terms of a propensity for scandal. I think people know about things going wrong in the public sector, data breaches, NHS scandals. People who believe we don't adequately protect animals in research wouldn't draw a great distinction between public and private institutions either.

What went wrong when presenting the case for genetically modified foods?

The slower you are in responding, the more difficult it is to credibly retrieve it. I wasn't closely involved at the time, but the one thing I think we've learned is that it's often easier to paint the picture of what could go wrong than to paint a picture of what could go right. With mitochondrial DNA replacement, it is quite easy for people to see that it's worth doing – it's a human story and you hear about families who had really awful experiences. Whereas with GM crops, people didn't make the connection between this science and famine. People didn't see it as part of the same question, even though if you asked a scientist why they were doing it, they would say we need crops that will grow in challenging environments.

Also, we realised at a late stage that we needed to capture and facilitate the broader public debate. Probably early on it didn't feel like anyone was really asking the questions the public felt should be asked. So while the scientists were very excited about the science and you could see possible commercial applications, we were slow in responding to the 'Frankenstein Food' type questions.

Are the current concerns about gene editing a continuation of the same issue?

We've set up a group to understand what the most pressing questions are, and we will undoubtedly look at CRISPR, as that is where public anxiety lies.
The first stage of our work is to try to understand the dominant narrative. What has leapt out is the idea of human gene editing, but we are struggling to understand why anyone might want to use that, as at the moment there are other techniques you could use to address the problems families currently face. So the work might take us into various areas. It could be plant or animal editing, depending on what we discover, on what applications we find are close. We might discover there are things that we don't need to worry about until someone actually wants to use it.

The human gene editing issue is in a way linked to the mitochondrial debate, as it is a step into a germ line therapy. So we want to tease out what is and what isn't important about the differences between somatic therapies [gene changes made to just one person] and germ line therapies [gene changes passed on to one's offspring].

My own sense is that when people put a lot of weight on that distinction, they did it because they thought the latter wasn't really possible. In the case of mitochondrial DNA, we decided that it was a germ line therapy, but in the face of pressing clinical need and with safety questions satisfactorily resolved, we didn't think it was a distinction of great ethical weight. There are reasons to be cautious, as it's germ line, but I uphold that view.

Sometimes it is technology that makes people anxious and sometimes it is more about the use. People are fine with using a technique to prevent mitochondrial disease, but if you start talking about creating children with blond hair and blue eyes, people find that very creepy.

Does it feel like bioethicists are always playing catchup?

The difference between what people are speculating might happen and what is close enough to require regulation can be quite significant. For example, with neurotechnology, we found it very difficult to find any non-medical applications, and when we tried to look into reports of military uses, we just hit a brick wall. What we thought might be a large piece of work ended up being quite small, as it wasn't clear enough yet what we thought was plausible.

I think we could say genome editing looks so obvious now, why didn't we do it two years ago? The only real defence is that nobody else picked it up at that stage either. So it wasn't that it was blindingly obvious and we missed it. We can't say for certain that we won't be missing something that turns out to be really important. So if your readers have any ideas on burning issues or emerging technologies on the horizon, we'd like to hear from them.

No matter how far-fetched?

We'd rather hear about them, and we can then try to follow them up. Very far-fetched things might not get through the process into our next piece of work, but we keep a running list of things that didn't make it and never lose sight of them – things might develop or coalesce to make them a topic for us in future. Casting the net really wide is important because our imagination is only as good as the people who talk to us.

It's almost like you have to keep a tab on what's going on in science fiction. Because most science fiction only works if there's a seed of connection with scientific reality. I understand Interstellar has prompted quite a lot of science education as people try to work out what is and what isn't plausible.

Biological techniques that were once extremely expensive and difficult are increasingly being conducted cheaply, sometimes by amateur enthusiasts. This surely will make regulating what people do more difficult?

Yes, at the moment things like synthetic biology can be broken down into areas that already have regulatory procedures. You can regulate access to materials, you can regulate access to labs, you can regulate access to public funds. However, when it becomes something that can be done by everyone – citizen science or DIY biology – those things don't help you. Our regulatory structures are mostly based on the idea that these things are expensive and difficult to do, but as it becomes easier and cheaper, who are you regulating? You suddenly have no bite.

You could say the answer is to stop people doing it, but that normally means you're too late – the knowledge about how to do it is already out there. DIY biology seems to have similarities to hacking. Early on, the people who hack do it because they get a buzz out of understanding systems. However, when it gets in the hands of organised crime or rogue states, it looks very different.

Three dimensional printing certainly feels as though it will take us into areas where it's possible to replicate things much more easily. In gene editing, as I understand it, the techniques are probably not particularly difficult, but knowing where to do it [which segments of DNA to edit] is. So when those things are better understood, I imagine it will become easier. If you can sequence and create genetic structures synthetically, it changes the cost of doing things significantly. You can see that the world will look very different not so long into the future.

How have our anxieties and attitudes to science changed in recent years?

When we were looking into the mitochondrial debate, we looked back at how people reacted to IVF at the time of the Warnock Report. The concerns were quite similar in terms of a 'yuck factor' and interfering with nature. The public's main concerns about IVF now are about a lack of funding for it and the postcode lottery of treatment. So you can see quite a considerable shift there.

There is a hard core of people who object to the technologies and believe that interfering with the reproductive cycle is wrong. When every new issue comes up they make the same issue again, for the same reasons. Going back further, there was a question about whether artificial insemination was adultery in the eyes of the Church of England. Now we want to know if you can trace the heritage and the identity of your parents and things. It's clear that what bothers the public has changed.

Whether it's right to see that as a gradual liberalisation, it's very hard to say. I do think there's a stronger sense at the moment that some of this is not the state's business to regulate on what is right for everybody. People are more likely to say: 'I don't support it for myself, but I support it for other people.'

In the 1990s, when we were established our work was probably more about those scare stories that were taking root. In the current climate, it could well be that the hype is on the other side – there is so much pressure for scientists to claim enormous significance for relatively early proof of concept work, and you end up with headlines announcing a cure has been found when it hasn't. It's probably now more about allowing the public to get a more balanced view about what is actually going on.

What issues do you think the council will have to explore in future?

I think we're probably grappling with anxieties around identity – what are the things that might change who we are? People are confident mitochondrial DNA replacement therapy doesn't alter who you are, but if you are editing the nuclear genome, it's different. What might be done to us that would stop me being me or become someone else? Our work on neuroscience was important too because people believe if you change the brain, you change your identity.

I suspect that is linked to worries about being free agents. I also suspect there are questions about insecurity – the world is beginning to feel a little less secure again. That will put questions about biosecurity into a different light. It's about what turns a technology into a communal anxiety.

A full list of the council's current work is available here.

Jonathan Montgomery is professor of health care law at University College London. He has been chair of the Nuffield Council on Bioethics since 2012 and is also chair of the Health Research Authority.