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Playing the long game: lessons from the mito story

Last week was pretty special for the SMC. We had the privilege of running the press conference where the first research findings on children born following mitochondrial donation were published. The technique was developed to allow a group of parents affected by mitochondrial disease the chance to have their own children free from disease.

Between 2002 when the SMC opened and 2015 when the treatments were legalised in the UK, we ran five press conferences on this research, which at that stage was all lab based – using mice, cell lines and research embryos to demonstrate proof of concept. But the new laws, passed after an impressive campaign by the science community, paved the way for licenses for the from the Human Fertilisation and Embryology Authority (HFEA) and the setting up of a clinical service in the NHS.

It was at that stage, in 2015, that things went quiet and I lost touch with the team at Newcastle University that I had previously been in regular contact with. Professor Mary Herbert, the pioneering scientist who led on the embryology side, Professor Doug Turnbull, the clinician whose despair at being unable to treat families led him to explore ways to prevent it, and Professors Alison Murdoch and Jane Stewart who ran the fertility clinic where the research took place. Multiple emails asking whether the treatment had worked went unanswered and eventually the straight-talking press office at Newcastle told me to stop barracking the experts and let them get on with their work. She explained that protecting the confidentiality of the patients who had volunteered to be the first in the world to get this experimental treatment was a top priority, adding that the challenges of setting up a brand-new NHS service for such an innovative treatment was immense. I got back in my box. This was translational medical science in real time, and I needed to step back and wait. 

As the years passed, I became more convinced that the lack of news from Newcastle meant the technique had not worked. I knew that would not in any way be an indictment of the scientists – after all this was experimental and the scientists had been very open about the fact that it might not work. But I would still have been devastated. For the patients whose hopes of a healthy child had been raised and the scientists who had invested so much. It was also during this time that I got the devastating news my cousin’s two young children have severe mitochondrial disease, bringing all this closer to home.

So when I found out a few weeks ago that 8 babies had been born who were free of the disease, I punched the air with sheer joy and relief.

Much has been written about the incredible story of the science and the parallel story of bringing the law, regulations and public on this journey and it’s an impressive tale. What I want to focus on here are my reflections on what this milestone tells us about science and the media and any lessons we can learn

 

Play the long game

One of the things I talked about in my book was how scientists need to play the long game, describing how subjects like GM crops, MMR and statins migrated  from scare stories to more measured coverage. Mitochondrial donation is another great example. Dubbed “three parent babies” by the sub editors who come up with headlines, the media rarely covered the story without reference to Franken- babies, ‘playing god’, eugenics or designer babies. Quotes from religious groups and others opposed to the research featured prominently and the media sought out voices from scientists expressing alarm, including this expert quote in the Telegraph in 2015:

“Dr Ted Morrow, Evolutionary Biologist, at the University of Sussex […]. ‘Remember Dolly the sheep? She died prematurely of an infection, but the method used to clone her is similar to MR techniques,’ he said. ‘There are a number of published studies that indicate genetic variation in the mitochondrial DNA influences an individual’s personality. So, swapping out the mitochondrial DNA from one person and replacing it with another will undoubtedly influence many different characteristics of an individual.’”

A report in the New York Times under the headlineThe brave new world of three parent IVF” quoted a US science writer saying  ‘It could open the door to genetically engineering a lineage of people with supposedly superior qualities. This is called eugenics, and many people find that repugnant.’”

But anyone new to the story last week would barely know the controversy existed. While the term ‘three-parent babies’ survived in some outlets it was now being put in quote marks and used in a positive way. ‘Three-parent babies’ are born in the UK via pioneering IVF treatment (Times), First “three-parent” babies found healthy in scientific breakthrough (Telegraph). Media reports talked of ‘groundbreaking’ treatment offering fresh hope to parents at risk of passing on incurable genetic disease to their children. I couldn’t find any reports across the whole UK media that included quotes from opponents. Instead, third party comments were generally from scientists. 

What I am not saying is that if you wait around long enough, controversial science becomes accepted. Far from it. There was no ‘waiting around’ on this story. At every stage, from early lab-based research to the birth of 8 healthy babies, the researchers and organisations involved engaged proactively and openly with UK science and health journalists. Every new development was seized on as another opportunity to get the journalists into a room with the researchers themselves or the scientists, funders, patient research charities and regulators. At these earlier briefings many of the questions focused on the uncertainties around the science, the risks involved and the criticisms from opponents. All were addressed and engaged with openly, with everyone in the mix understanding that public and media trust cannot be assumed and has to be earned.

Many of the science and health journalists sitting in the SMC last week to hear the findings have followed every twist and turn of this science story. They understand the science, have come to know and trust the authors and have long been adept at translating the complex science into a clear and compelling story for a mass audience. Just hours after the press conference, I was sitting at home watching James Gallagher from the BBC and Tom Clarke from Sky News standing in front of infographics clearly explaining the science behind the day’s good news.

So the lesson I would love us to take is that engaging with the media when subjects are their most contentious is critical. This really matters. Much has changed for the better in science communication, but we still regularly come across people who see controversy as something to be avoided at all costs. I recently had a call from a press officer who explained that recent media controversy about something they were about to announce had convinced them to radically change their plans for a high-profile launch. This is almost never the right decision. The short-term gains of avoiding a spike in sensational headlines or a social media row are far outweighed by the long-term costs of the lost opportunity to gain public understanding and trust.

 

Scientists who engage with the media often end up trusting and respecting science journalists

The leading scientists in this case were no fans of the media limelight and in the early days the university had to put up a media friendly clinical geneticist to speak for them. To be fair their fears were not exactly unwarranted. While they were working away quietly the media frenzy prompted by a proposed government ban on research using human-animal embryos raged on the front pages. One Times front page featured an image of an oversized rabbit to illustrate the story and one I still use in my slide sets was a Sun piece sporting a pic of a woman with a cow’s head under a classic tabloid headline ‘I’m A Bit of a Cow’. But as a long-time champion of the UK’s great science journalists, I took huge pleasure from observing these academics slowly finding their media legs and what we saw last week was a group of scientists at ease with journalists.

The British public and policy makers may have been introduced to this science under scary headlines, but they also learned early on what the research involved, understood that the third person was in fact a donor and that the percentage of DNA from the donor was less than 1% and understood that if we rejected this research we would be depriving patients of a treatment that could allow them to have children free from devastating disease.

So much is said about public trust in science, but scientists need to trust the media too and this is a lovely story of how consistently responsible coverage resulted in mutual respect

 

Be careful what headlines you wish for

Another lesson I would draw, though on this all the scientists will disagree, is that we don’t need to worry as much as we do about sensational headlines. I know that sounds weird coming from someone whose role is to get accurate and measured press coverage. I’m not saying that the framing of new technologies doesn’t matter. Those scientists behind the genetic modification of crops back in the late 1990s are unlikely to feel that the media branding them ‘franken-foods’ was helpful in gaining public understanding or acceptance. The scientists and press officers involved with this research were dismayed when headline writers started using the term ‘three-parent babies’. Before the scientists even had chance to explain the research properly, the media headlines were giving vibes of something unnatural afoot, playing into other narratives around scientists ‘playing god’ and slippery slopes from disease prevention to babies designed for blue eyes and musical prowess. The term is also just plain inaccurate. The third person in the mix here is a donor – like a blood donor or a kidney donor – giving her healthy eggs to allow couples to have their own biological child. The idea that this woman is somehow a third parent – biologically, socially or legally is nuts. But sub-editors liked it, claimed it helped draw audiences to the story, and it stuck. But here’s the thing. I’ve never been convinced that these kinds of headlines automatically doom a new technology, and the way this story has played out kind of proves my point.

In my view it wasn’t the Franken-Foods headlines that did for public acceptance of GM in the early days – it was the failure of most plant scientists to engage effectively and early enough in this media row. In contrast, the scientists working on mito and the many organisations supporting them embraced the media interest and proactively addressed criticisms and concerns. British politicians voted in 2015 to allow the research to move into the clinic knowing from tabloid editorials that it would not be a vote loser.

In all my years of working with incredibly talented scientists I have rarely come across any that would make great headline writers. When one journalist asked an SMC panel how they would like human-animal embryos to be described one academic enthusiastically suggested ‘cyborgs’, making me think we should be careful what we wish for. Heroic science producers at the BBC did eventually get an editorial decision to use ‘Three-Person IVF’ and last week I saw several headlines adopting that. But given all the reporting was excellent it somehow felt less important. I think there is a lesson here for others. Research communications experts must do our best to get measured and accurate coverage and give scientists their best chance at getting public support. But in the end, we don’t get to control the framing of stories being reported by an independent press. This story and others like it show that the best way to get good quality coverage is to engage with the media, warts and all.

 

In summary

One of my favourite comments last week came from Prof Andy Greenfield who had been heavily involved in the independent scientific oversight of this work.

“How do we summarise what this all means?” asked Andy.

“It is a triumph of scientific innovation in the IVF clinic – a world-first that shows that the UK is an excellent environment in which to push boundaries in IVF; a tour de force by the embryologists who painstakingly developed and optimised the micromanipulation methods; an example of the value of clinical expertise, developed over decades of working with children and adults suffering from these devastating diseases, being used to support a new intervention and subsequent follow-up, potentially for many years.

I am not as eloquent as this professor, but I am clear that as well as a triumph for science this story is a great example of the importance of scientists engaging with media.

After all, does anyone really think we would have been celebrating this incredible achievement last week if that had not happened?

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