Jon Roberts, Wellcome Trust Sanger Institute
Kat - As Robert says, it’s vital that we start a public conversation about genes, genomes and genetics. But how? On way, according to a new project launched by the Wellcome Trust Sanger Institute, might be through fictional characters in modern culture, such as the X-Men film franchise. Characters such as Wolverine and Storm have probably done more to increase knowledge of the terms ‘mutants’ or ‘mutation’ than any number of biology teachers. Jon Roberts is leading the study.
Jon - So, I was working as a genetic counsellor in Addenbrookes and I was interested in how new genomic technology was sort of going to affect genetic counselling and I wanted to explore how families would communicate not just when they were discussing one gene at a time but how potentially with a whole genome sequence they’ll be discussing potentially thousands of genes at a time. So that was the starting point. It was kind of applying idea from genetic counselling. We’re looking at how they would impact us in the era of whole genome sequencing.
Kat - Traditionally, people maybe had a family history of a particular disease, they’ve gone to a genetic counsellor, had a test and said, “Okay, yes. It’s this breast cancer gene that you’ve got” rather than looking at the entire genome and going, “Oh! What's in there?”
Jon - Yes. So, I think that was the point at which I was coming at it is that often, when people have genetic counselling, they're coming with a specific question. Often a lot of times, it can be given to answering that question, kind of going through the ins and outs of a particular gene. Often their family will know about that as well whilst with the genome sequence, there's lots of different questions that could be asked. Often, people might not be familiar with the kind of questions or the answers they might get from a genome sequence. So, it felt as if there was potentially new questions that were going to arise from that, and new ways that families would be sort of interacting with genetic knowledge.
Kat - And are we talking about in-depth genome sequencing, or the kind of after shelf, sort of the 23andMe type kits that people can just buy and do?
Jon - A bit of everything really. I'm kind of interested in both on a kind of a narrow and a broad sense. So, I think I'm interested in what happens when you have a genome sequence or you have a direct to consumer test. And you find out that you’ve got something very specific. But I'm also kind of interested on the broad sense. What happens if you just go and have a genome test just to find out about your ancestry, kind of how that’s going to get talked about in the family, and how that might spark an interest in genetics.
Kat - What are you actually investigating, what are some of the tools that you're using?
Jon - Particularly interested in how we can use people’s own interests and their skills and their knowledge to spark interest in genetics. So broadly, it can be thought of as bottom up as opposed to kind of top down. During a particular tour from sociology called funds of knowledge that was developed primarily in the States with disadvantaged families in educational settings that looks to bring children and families’ own skills and competencies into the classroom to help with learning experiences.
Kat - As an example, if a family really, really likes football, you could try and steer it around football to help them learn something.
Jon - Exactly. So, it’s been showing us quite a good way of helping people engage in topics where they might have been put off before when they sort of think it’s not for them. So, there's an issue in science as well with people not thinking science is for them or sort of not thinking they're “sciencey” people. I kind of wanted to make sure that I bypassed and try to engage people who otherwise might be off put by reading something about genetics or genomics. They might see that and think “that’s not for me!” whereas I wanted to make sure that I was kind of reaching a wider audience. My starting point is finding out what people are interested in, what they're good at, what they think they're good at, and using that as springboard to engage people with genetics.
Kat - One of the common ways that we hear about genetics is through things like films and popular culture. I'm thinking of the mutants in the X Men or a film like Gattaca or something like that. Is that a really good in road to helping people talk about genes?
Jon - I think it’s an excellent way of getting people interested on it. I think it’s a huge source of people’s language and familiarity with genetics. I think it’s something that shouldn’t be kind of looked down on but really respected. I think some people worry that the science in films is an accurate or kind of overblown. But I think actually, a lot of new research that looked at how people engage with films recognise the people who know that and they're able to kind of recognise that the science is a bit silly. But it’s also they're major in to knowing about science. So an example might be the word ‘mutation’. When Stanley created the X Men, he wanted to call it the mutants but it was voted down as a name because nobody understands what a mutation or a mutant is. Yet now, it’s a common word used and I think people have a rough idea of what it means. I think that popularisation has come about not necessarily through high end public engagement with science, but through popular culture, films, TVs and comics.
Kat - Sadly, for my friends who’ve had 23andMe test done, it doesn’t tell them that they’ve got X-ray vision.
Jon - Unfortunately, not. But that would be nice. A friend visited my work at the genome campus in south of Cambridge and a friend visited it rather hoping he’s going to get bitten by a spider and become Spiderman, but that wasn’t the case. But I think it is often the way people – you talk about films, you talk about books, you talk about comics, and it gets people interested. It gets people talking. It gets their imaginations going and that’s what I really want to build on.
Kat - So, tell me a bit more about the specifics of the project. What is this research project actually going to be doing?
Jon - It’s going to be split into two parts. The first part is an online survey, sort of a broad survey that looks at people’s familiarity with genetics in different contexts. So, how many people have seen it in different films, different books and also, sort of aims to get an idea of kind of broadly speaking, what people’s interests are and if there's any overlap with things that would be particularly kind of helpful for thinking about public engagement with genetics. After I've done the survey, I'm going to do some sort of family interviews and some focus groups that are going to look at how people talk about inheritance, how they talk about films, how they talk about what they're interested in, and just sort of try and see that knowledge in context because I'm interested partly in what people know but also, how people use that knowledge in context. The reason for that is knowing about genetics I think is going to be quite important for empowering people and empowering families. And if you're going to empower people, you need to know not just what they know but actually, how confident are they to use that knowledge in different contexts.
Kat - And do you think that one day, we’ll see a superhero film that has a genetic counsellor in it.
Jon - I hope so. There's a film called Still Alice that deals with inheritance in quite a sensitive but I would love to see genetic counselling in film and TV and really, kind of get it into the mainstream because I think a lot of the time, people only know about it if they’ve had genetic counselling. So, I’d love to see, I think a superhero film would be interesting. I think one of the big ways it’s going to get into popular culture is through soaps. So there was a big storyline of, I think it was BRCA, that came out in EastEnders. I think that’s a really good way of reaching lots of people and getting ideas of genetic counselling, what genetic counselling is into the wider discourse. It’s through things like soaps.
Kat - Jon Roberts from the Wellcome Trust Sanger Institute, and you can find out more and even take part in his research project at www.characterofdna.com