Communicating Genomic Progress
Genomics is the science of people, but how can you get members of the public to engage with a topic that they may not understand?
Communication is one of the fundamental principles of science and genomics is no different. What’s more, it’s an area that relies on large-scale and frequent engagement and interaction with people who are not part of the scientific community at all, something which has been a major challenge in the past. Connecting Science, an organisation based at the Wellcome Genome Campus near Cambridge, UK, are one of the teams seeking to overcome this hurdle; we spoke with Director Julian Rayner, PhD, to find out more about the work they’re doing.
FLG: Can you tell us a little bit about Connecting Science’s mission and how it came about?
JR: Connecting Science is one of three Wellcome-funded organisations at the Wellcome Genome Campus. The one that everyone knows about is the research arm: the Wellcome Sanger Institute, which originated from the Human Genome Project and has gone on to be a leader in genomic research over the last 25 years.
But Mike Stratton, Director of the Sanger Institute and Director of the Wellcome Genome Campus, realised that there is much more to genomics than just research, especially as the field is revolutionising so many areas of biological science. Modern genomics is having an impact in areas that you would never have expected. Archaeology is a great example, but it’s also influencing healthcare, life decisions, and how people learn about their ancestry and family. This has brought with it an enormous amount of training and public engagement challenges because there are lots of people, both members of the public and professionals, who need to learn about genomics when they never needed to before.
In reaction to this, Connecting Science was formed about four years ago. It brought together four groups on the Wellcome Genome Campus that were working in this area – training, conferencing, or public engagement – with the mission to enable everyone to explore genomics and its impact on research, health, and society.
It’s the external interactions that take place on the Genome Campus, with both public and professional audiences. We run hands-on courses, organise big conferences, bring professionals together, encourage and facilitate public engagement, and enable the public to explore the latest advancements in genomics. As part of that, we also listen to people’s responses and concerns and try to feed that back into the science side of things.
FLG: You’ve said that you work with both the general public and professionals; is there a point where you’re bringing those two groups together?
JR: Absolutely. Our work is a spectrum and so there are lots of overlaps in the things we do. For example, there’s a conference centre on Campus that is a key part of our programme and within it, we have a public engagement space. The Genome Gallery hosts science-art exhibits and we make that open to the public regularly; community and school groups come in and spend time in that space.
Or, as another example, we had a conference on the genomics of human evolution last year. On one of the evenings of the conference, we had a public session where several of our invited speakers very kindly stayed on to give talks, and a room that half an hour before was filled with scientists was then filled with members of the public.
Our Advanced Courses and Scientific Conferences team also runs a Public Engagement Masterclass. We treat it as a professional discipline and as a training opportunity. That’s not something you’d do unless you were passionate about this.
Really, all of our public engagement work is about bringing scientists and the public together. The definitions of public engagement are many and varied, but the most important thing is that it’s about two-way dialogue. It’s about scientists and people coming together to listen and learn from each other.
FLG: In the life sciences space in particular, it can be very difficult to ensure that speaker line ups are balanced and representative. As an organisation that engages with the public and offers a window into the industry, it’s more important than ever that people can relate to the individuals educating them. You do that very well, especially regarding gender balance; is that something that you were intentionally striving to do or is the field moving to the point that it is more inherently balanced?
JR: It’s something that we intentionally did. I’m very passionately committed to it on a personal level, and it’s something that the Advanced Courses and Scientific Conferences team – led by Rebecca Twells, PhD – were really interested in doing, driven by by Scientific Programme Manager, Treasa Creavin, PhD..
We used to have a stipulation that if we were producing a conference or course, the organisers should strive for gender equality. That was the policy for a number of years, but we realised that it just wasn’t enough to get equality; we were getting 20-30% female speakers at best. So, about a year ago, we decided to bite the bullet and make the policy a mandatory thing. Now, the organising committees of any scientific conferences we put on, as well as the invited speaker list, have to be gender balanced.
We’ve had some push-back on that, with people arguing that there weren’t enough experts in their field or that now wasn’t the right time for this, but that reaction has been more than outweighed by the positive feedback. We’re now seeing 50% female speaker lists and 50% female organising committees, and I think that’s had a huge impact. It’s something that we’re enormously proud of.
On the public side, you’re absolutely right. There’s a huge agenda to increase the diversity of people in STEM and a part of that challenge is ensuring that young people considering going into the field can see people like them already there. There’s a popular misconception about what and who scientists are, and so we need to show people that scientists are just as diverse as the communities we work with. That’s a really, really important message.
Our commitment to diversity is critical, on both the public and the private side. There is no more personal science than genomics; it is about every single one of us individually and so I think, as scientists, we have to reflect that. Our science has to reflect the diversity of humanity, in the deepest way possible, because genomics is important to every single person on the planet and we have to make ourselves open in response to that.
FLG: Push-back is something that we’ve seen come up a lot, where people say that they’d love to see equal representation but that the pool isn’t deep enough to fairly represent various groups, and that can sometimes be true. Do you think it’s the responsibility of conference organisers and media to try to address that balance, or should there be more going on in research institutions and industry to change the balance earlier on? Or is it further back with students and education, to make sure that there’s a viable route for all groups to move into STEM and genomics?
JR: It’s not just our responsibility – the responsibility rests with everyone. But what I’ve become aware of is that if we wait for institutions and senior level positions to change, we’re waiting too long. I’m not prepared to wait that long. Those of us with the opportunity to make policy and changes have to individually stand up and push for the future we want to see, and then challenge others to follow up.
If we’re just talking about gender, 50% of PhD students have been female for a long time now and that still isn’t being reflected in roles at a senior level. There are many reasons behind that, but anyone who has the opportunity to impact change has a responsibility to do so. It’s something that we felt it was our responsibility to do.
And while there has been push-back, we’ve actually found that when you enforce that balance as a rule for anyone who wants to organise a conference with us, those discussions dissipate, and female speakers start to be recruited. We’ve seen no impact on the number of attendees at our meetings, so there’s no question that the quality has changed. Sometimes you just have to take a robust stand, take a bit of criticism, and crack on with it.
It’s not just about speaker gender balance either. This year is the 30th anniversary of the Advanced Courses and Scientific Conferences programme and, as part of that, we’re testing something called ‘caring bursaries.’ These are for people who want to come to conferences or training courses but can’t because of their caring responsibilities. We’re offering them financial support so that they can provide temporary, alternative caring facilities that enable them to attend the courses or conferences that they’re interested in.
It’s a complex area, but we’re committed to doing everything that we can. As I said, genomics is for everyone and we need to make it clear that we’re for everyone too.
FLG: And looking for fair representation can bring some fresh voices into the mix too.
JR: I absolutely agree. At meetings and events, you can get a lot of déjà vu because you’re meeting the same people and seeing the same speakers. This policy has made sure that we’re looking outside of our usual speaker networks and challenging ourselves to find new people, and I think that increases the quality. It’s all for the good.
FLG: What does success look like for Connecting Science? At what point can you think that you’ve achieved what you wanted to achieve?
JR: Our ambition is to have a big impact on the way the world engages with genomics. We want the Wellcome Genome Campus to be known as the place to come if you want to learn about genomics, both physically and digitally. We’re making some progress, but we’ve got a long way to go.
The other real ambition we have is getting researchers to see us as part of their job. Communication, both to each other and to the outside world, should be a fundamental part of the academic mission and we want to be a leader in making that happen.
I think that at every institution, in the UK particularly, there are lots more opportunities for public engagement than there used to be, but too often it’s still only a few committed scientists who are involved. I’m not saying that everyone has to get involved, but we want to develop a wide range of opportunities so that people at every level can participate in lots of different ways.
I think it’s part of the responsibility of a research institution or campus to build a population of engaged scientists who can sustain that internal and external awareness. That’s just part of our job as academics. We have an incredibly privileged job; we often get charitable or public money to pursue our scientific interests for the good of humanity, and so I think it’s our responsibility to engage humanity with that work as we go.
FLG: Often the people who are most passionate about public engagement are those who come into regular contact with the general public; genetic counsellors are a great example. It’s less common for researchers to follow that passion because the industry can be very inward-facing. How did you first get into it all?
JR: It’s something I’ve done throughout my career. I’ve always enjoyed talking about the research that we do, and so I took part in a few different things over the years. The main catalytic moment for me was several years ago, when I participated in a programme called ‘I’m a Scientist, Get Me Out of Here!’ At the time I was one of the public engagement people here at Sanger and the experience was absolutely fascinating for a number of reasons.
One was that, as an online programme, the audience and the participation was very different than what you got face-to-face. That was the first time I thought about audiences with any level of complexity; I’d sort of thought that if you just show up and talk, then you’re doing your job. Now I’ve found that if you just show up and talk, you know who’s going to ask questions as soon as you walk into the room, because they’re the ones sitting at the front who are very engaged. But there are a lot of other people in that room who, for many different reasons, just don’t feel comfortable asking questions in that kind of format. However, if you change that environment and put people online, then those inhibitions can drop away and everyone can get involved and ask questions.
The second reason was seeing the sheer creativity and innovation in the field. In my role as Director of Connecting Science, I’ve been privileged to go to a number of public engagement events and collaborate with lots of people, and this field is so extraordinary in its creativity. I think that’s something that scientists could really respond to. That’s what really hooked me. I knew that I wanted to learn and do more.
At the same time, I was involved in one of the courses run by the Advanced Courses team. They run 25 courses a year, which are a week- to two week-long courses of hands-on, practical training, both at the Wellcome Genome Campus and across Africa, South East Asia and Latin America. My good friend and colleague from the malaria programme at Sanger, Oliver Billker, and I had been running a course on experimental genetics of malaria, discussing how to make genetically modified parasites and so on. We ran that on Campus here for a number of years, and then the Advanced Courses team asked us if we wanted to take the course overseas as part of their outreach work.
So, we ran the course in Bangkok four years ago at the Mahidol-Oxford Research Unit and that was an amazing experience. Last year, we ran it in Accra at the University of Ghana and we’re set to go back to Bangkok this year. It’s been really great to see that innovation and involvement, taking your research to audiences and places that you’d never imagined.
When the idea for Connecting Science – it was called something different back then – was formed, I knew that I wanted to be a part of it, so I put myself up for the director role. It fits with what I believe in exactly, in that I think it’s our obligation and responsibility to share our work as broadly as possible.
FLG: You mentioned that it’s the 30th anniversary of the Advanced Courses and Scientific Conferences programme this year; where did the programme come from and how did it start?
JR: It’s a remarkable success story. It started with a single, Wellcome-funded course in the summer of 1988 at Guy’s and St Thomas’ Hospital in London. The idea was to teach people new, cutting-edge techniques, which in those days were pulsed-field gel electrophoresis and PCR. Professor Kay Davies, who went on to become part of the Board of the Wellcome Trust, was one of the instructors, alongside speakers such as Alec Jeffreys and Ed Southern, who are legends in the field. And the course kept running every summer; it was hugely successful and the instructors were getting a lot out of it. With the generous support of the Wellcome Trust, it has just grown and grown.
The courses themselves are remarkable; some of them have been running for almost the whole of the 30 years. Most of them take place on the Genome Campus, which is just outside of Cambridge, UK, in the grounds of an old stately home. It’s quite isolated and something special happens when you take 18 to 20 postdocs, trainees, and PhD students and put them with a team of instructors for a week. It creates this extraordinary, intense atmosphere. An enormous amount of learning goes on and collaborations and contacts have been made that have lasted for years. We regularly reach out to people who have taken our courses to ask them about the impact they had on them, and we’ve had some great feedback about how they benefited their career.
And while these courses are often run for years and years, the instructors change over time, so the content naturally evolves. Then within that, we started running those courses overseas. The Wellcome Trust is very committed to research, both in developed countries and low- to middle-income countries, and so we wanted to take our advanced courses abroad.
At first, those were primarily the informatics courses, because the logistics of computer-based workshops are easier to manage, but we now also run lab courses too, which are very challenging but extraordinarily rewarding. For example, when we ran the course in Ghana last year, we were looking at a packed room of incredibly talented and committed young African scientists, who are just as good as the students here at the Wellcome Sanger Institute and who are so hungry for that knowledge. You can see the impact your work is having.
It’s an extraordinary programme. Over the last 30 years, it’s reached more than 20,000 scientists in one way or another. The team is incredible; putting on so many courses in a year means that the lab set ups have to change almost every week to accommodate them. It’s an amazing churn of material and content.
It has a visible impact and that’s why we do it. People can go away with knowledge, skills, and connections that they didn’t have before and that’s the whole point. Science is very much about interacting with people; it’s not something that you do by yourself in a lab without talking to anyone. For that, our courses are quite unique. There’s no other UK organisation like it.
FLG: When talking about public engagement, people can often be split into two groups: those who are curious and willing to learn more, and those who more resistant and un-engaged, and who are much less likely to take part. How do you go about engaging individuals who are uninterested or who may not realise how much they might need this information?
JR: That’s one of the most fascinating areas of public engagement for me. Those hard-to-reach or un-engaged public audiences are a huge area of focus for many organisations because, despite all the wonderful public engagement work that we and many others do, there is a sense that you can often be talking to the same people. That doesn’t mean that it’s not a good thing to do at all, but there are always some people who will see an advert for a science event and will never think that they should go.
There’s also a geographical element to it. You can hardly walk through Cambridge without falling over a scientific institution of one kind or another, but you don’t have to go far outside of the city before it’s a different story. One of the things that we’ve now started to do for public engagement is to deliberately target areas or schools that might not necessarily engage with this type of thing normally, or which might not have had the opportunity before and instead of inviting them here, we go to them. We take scientists from within institutions on Campus and go to these schools, and, where possible, make it easier for them to come back to us as well.
Another team we have within Connecting Science is Society and Ethics Research, led by Dr Anna Middleton, a genetic counsellor. One of the things she’s really interested in is finding out how you can start people talking about genomics and how you can start those conversations. If you have a really well-made YouTube video discussing how genetics works, you might get a few thousand hits, while an ad campaign from someone like Dove gets millions and millions of views. Why is that?
One part of it is the metaphors that we use to talk about these things and how accessible the language we use is. A lot of genetics relies on concepts that are familiar to people, but that understanding can get lost if we use deep scientific language to talk about them. So Anna and her team are exploring other ways for us to talk about these things, such as using tremendously rich material sources like film or media. At the moment, they’re working with genetic counsellors to investigate using music as a metaphor for genomics and the participants are going to give feedback on whether they thought it was helpful or not. I think it’s an amazing study and it really shows how we can use metaphors.
Harry Potter is a great example of this; in the world of Harry Potter, magic is clearly genetically inherited. A colleague sent me an article in PLOS Genetics which was discussing whether magic was mono-allelic or multi-genic; it was a very tongue in cheek article, but the point of understanding was there. You can have these conversations with people using completely different contexts and metaphors and that can help you reach that understanding.
We just have to challenge ourselves. People don’t have to be interested in science to be interested in genomics; it’s all about how we talk about it and who we talk about it to.
FLG: Metaphors are an incredible help in getting complex points across very quickly in a way that a lot of people can understand.
JR: No question. This is something that’s going to affect people’s lives; it’s not an abstract thing that someone may or may not be interested in. In the next few years, everyone is going to become a genetics patient or be related to someone who is.
We’re in the process of changing the scale of people we can host on Campus and, as part of that work, we did a focus group with a deliberate mix of people who were engaged in science and those who really weren’t interested. And what we found was that once you got a certain way into it and explained what we were trying to talk about, suddenly, the lights went on in everyone’s head and everyone had a story to share about their own personal experiences. It’s such a personal thing. Eventually, everyone is going to be affected by a genetic disease either directly or indirectly, and it’s going to become more and more a part of our conversation. So, we need to find and test these metaphors as rapidly as possible.
FLG: There are a lot of people out there who would love to do more to engage with genomics. What would you encourage them to do to help teams like yours?
JR: I think it’s a question of seeking out opportunities. There are lots of them out there but sometimes you have to look for them. It’s not something that you have to get help with either – you can go out and do it yourself. We have a website called yourgenome.org, which has a bunch of resources and activities that you can take to your local school or scout group, etc. and work on together.
The other thing I would recommend is to find experts. In the UK, most institutions will have a person or team that is responsible for brokering public engagement opportunities and those are the people you want to speak to. As I said before, the field of public engagement has an enormous community of creative experts and it’s a collaborative system. It’s like science that way. You can find the people who know the stuff that you don’t know and work with them.
The final thing is practice. This isn’t something that you’re immediately an expert in and so you try, and learn, and go on any courses you can to get better. I think you should see it as part of your career development. It’s up to institutions to provide training opportunities for people, but it’s also up to us as individuals to seek out those opportunities and do them.
FLG: Is there more that media companies like FLG can or should be doing to promote engagement?
JR: I don’t know the details of FLG specifically, but there’s a lot more that people can do. One thing is to involve the public in your discussions. So, for example, if you have a magazine, put in a regular feature that involves patient groups or public organisations; make public engagement a regular part of your reporting. And if you’re in events, you have an amazing network of scientists – I bet that if you put on an event for the public with good publicity and asked a few of your contributors to come, it would be a success.
One of the things we’re really excited about right now is nanopore sequencing, because we can use it in lots of different environments. As a public engagement tool, that’s extraordinary. We can go into a school with a nanopore sequencer, ask someone to open up their lunchbox, take out a yoghurt, and then start sequencing the bacteria in their yoghurt right there and then. It’s so innovative and exciting. People doing real science is incredibly interesting, because it stops being an abstract thing and becomes something that you can take part in.
Another public engagement project that we’re working on at the moment is called Genome Decoders. The human whipworm was sequenced here on Campus, and now A -level students at schools around the UK are annotating that data with genome browsers for genes and exon-intron boundaries. It’s a project between ourselves and the Institute for Research in Schools, which is an amazing organisation.
I think everyone can do more if they want to, it just takes that institutional commitment to do it.