In this week's episode, I speak with Professor Helen Fisher, Professor of Developmental Psychopathology from King's College London and Rebecca Gray on the Environmental Risk Longitudinal Twin Study (E-Risk Study).
The E-Risk Study builds knowledge around the question of how environmental and genetic factors contribute to the development of behaviors', health, and mental health problems from childhood through to adulthood.
We discuss the importance of twin studies, some of the factors the E-risk study measured over a period of time, the data collected, and some key insights that has been contributed from it!
Website: https://eriskstudy.com/
Professor Helen Fisher: https://www.kcl.ac.uk/people/helen-fisher
Twitter: https://twitter.com/HelenLFisher
https://twitter.com/ERiskstudy
In this week's episode, I speak with Professor Helen Fisher, Professor of Developmental Psychopathology from King's College London and Rebecca Gray on the Environmental Risk Longitudinal Twin Study (E-Risk Study).
The E-Risk Study builds knowledge around the question of how environmental and genetic factors contribute to the development of behaviors', health, and mental health problems from childhood through to adulthood.
We discuss the importance of twin studies, some of the factors the E-risk study measured over a period of time, the data collected, and some key insights that has been contributed from it!
Website: https://eriskstudy.com/
Professor Helen Fisher: https://www.kcl.ac.uk/people/helen-fisher
Twitter: https://twitter.com/HelenLFisher
https://twitter.com/ERiskstudy
Hey everyone and welcome back to another episode on the Behind the Stigma podcast. I'm your host, Seiara Imanova, and in this week's episode we are discussing the Environmental Risk Longitude Mill Twin Study, more commonly known as the E-Risk Study. Our guest speakers today, who I'm delighted to introduce, is Professor Helen Fisher and Rebecca Gray.
Seiara Imanova:Professor Fisher is a professor of developmental psychopathology at the IOPPN in King's College London, researching biopsychosocial and environmental risk and protective factors for young people's mental health. She has a strong interdisciplinary background in psychology, social psychiatry, epidemiology, genetics and epigenetics. Professor Fisher is also a chartered research psychologist and associate fellow of the British Psychological Society, along with being a fellow of the Higher Education Academy. She has also received several national and international awards for her research, including a recent emerging leading prize in adolescent mental health from the Medical Research Foundation. Rebecca Gray is the project coordinator in the E-Risk Study, who has done extensive work with the twins at the ages of 5, 7, 18, 26 and soon age 30. She also works in the education sector within a secondary school setting, supporting students with their well-being and access to education. Professor Fisher and Rebecca, welcome. So lovely to have you both on the podcast.
Professor Helen Fisher :Thank you so much for having us. It's a fabulous to be here.
Seiara Imanova:This is a very exciting piece of research. The E-Risk Study is over 150 publications with over 1,000 families involved, and I mentioned in my intro that it's a longitudinal study. One thing that's so amazing about that is that it has the ability to capture over time one variable and examine it in long-term outcomes of it. But another thing that's very fascinating about this particular study is that it focuses on a subset of twins. Now, before we actually go into what the E-Risk Study is and I'll let you both get into that perhaps you can tell us a little bit about the importance of twin studies and research. What does this type of study design inform us that other research designs can't, and what's usually the purpose of investigating twins in psychology or psychiatry?
Professor Helen Fisher :Yeah, absolutely So. Twins are a fascinating group of people. They're a really lovely natural experiment, if you like, in what happens to people over time And they really allow us to get at a kind of a couple of different things But in essence really get a sense of what is the contribution of our genes, of our makeup, to what happens to us, versus how much of that is due to the environment and the experiences that we have as we grow up. So they allow us to kind of look at that relative contribution of our genes and our environment to mental health outcomes, to our behaviors, to what we end up doing and what we achieve. And it kind of works in a couple of ways.
Professor Helen Fisher :So firstly, this is a study which has both identical or what we call monozygotic twins, so they share all of their genetic makeup. And then we have non-identical or dizygotic twins who only share half of their genetic makeup. But they're all twins who were, as twin pairs, were brought up in the same family, so they all share the same family environment while they were children and largely through adolescence as well. And what we can do with twins in this way is we can kind of compare how similar are the outcomes of those identical twins to how similar are the outcomes of the non-identical twins, so we can kind of compare them because they both share the same environment. So it's not to do with kind of the environments that they live in, but the identical twins have all, share, all of their genes, whereas the non-identical twins only share half. So if we see that for identical twins, both of them as they grow up both develop depression, for instance, and in non-identical twins only half of the time one of them develops depression and the other one doesn't, we can see that the similarity between the twins is probably due more to their genetics than their environment, because both sets of twins would have shared the same types of environments with their co-twin, but in one, in the identical twins, they're also sharing all their genes, so it seems to be the genes that might be driving what's going on.
Professor Helen Fisher :Whereas if actually we saw that the rates of depression in two twins that are identical in, the rates of depression in two twins who aren't identical, are actually very similar, it's probably more to do with the environment that they grew up in and their experiences than it is to do with their genes, because having more similar genes doesn't seem to be making any difference. So it gives us a bit of a sense of is it genes that are really pushing what's happening or is it actually more of the environment And that can help us to decide how we might intervene, how we might target what we do. So, for instance, we see from that kind of work that depression, for instance, about 40% of the time is what we call heritable, that it seems to be driven by genes, but actually the rest of all of that is to do with the environment we grow up in and what we're experiencing, whereas something like schizophrenia it might be more sort of 50% to 80% driven by our genes and the rest is our environment.
Professor Helen Fisher :So, it gives us a little bit of a feel for what's the kind of contribution genes and environment. The second thing that a twin study like this can do is get us a little bit closer to establishing does one thing cause another thing in a very natural kind of experimental way. So normally if we want to know, for instance, does bullying lead to a particular mental health problem, we look in the population and we say, okay, there seem to be an association, but we don't really know if bullying is leading to that mental health problem. To do that in a real experiment we'd need to allocate some children to be bullied and some not and see what happened to them as they grow up and we're clearly not going to do that.
Professor Helen Fisher :So twins kind of provide us with the next best option. And they do that because if we compare twins within a pair, if they're genetically identical and they share the same environment as they grew up, if one twin is bullied and the other isn't, and we follow them over time and see, okay, that twin that was bullied was more likely to develop the mental health problem than the one who wasn't, then we can start to get a sense that actually that must have been due to that unique experience of being bullied or something else that they experienced. That the other one can't be due to their genes, because they share all of their genes. It's not to do with the genes. They grew up in the same family environment, it's not to do with their family environment. It must be to do with bullying or something else that they experienced that was different from the other twins.
Professor Helen Fisher :So what that does is starts to get rid of some of those other explanations and starts to get us closer not quite, but closer to thinking actually maybe bullying leads to that mental health outcome and that gives us really strong evidence that we want to go in and, for instance, tackle, either prevent bullying or deal with the consequences of bullying a bit better. So it gets us closer to establishing that causal connection and, as I said at the beginning, it also gets us closer to understanding what's the kind of relative contribution of genes and the environment to those experiences. So it's a little, yeah, it gives us a couple of really interesting windows into understanding people's mental health and better behavior.
Seiara Imanova:Before we actually go into your contributions as well, let's actually talk about what the e-risk study is. How did it come about and maybe what are some of the main goals of what the study was and perhaps still is trying to find out.
Professor Helen Fisher :So the e-risk study was set up in early 2000 by Temi Moffat and Alton Al-Kasbi and they selected a sample of twins for a much bigger twin study and they selected 2,232 twin children so that's 1,116 families to really intensely study and follow over time and they were really interested in trying to understand what was that relative contribution of genes and the environment to the behavior and the mental health of these children as they went through childhood and then on into adolescence and adulthood. I think one of the really interesting things about what they decided to do when they selected those families was that they were really conscious that what often happens when you invite people to come into studies is it's pretty common to get slightly more middle class and well educated people to agree to come into studies and that means often you have a bit of a bias on, you don't really get enough people who live in more deprived areas and are struggling more and unfortunately we know that actually a lot of the prevalence of mental health and other behavioral issues unfortunately is more common in families and areas where they are more deprived and much poorer, because those people are dealing with a lot of social strash and a lot of other issues. So what they decided to do when they set up the study was they over selected for families where they over selected for families where the mother was slightly younger, so she was less than 20 years old, to try and get it to kind of capture families where they might be coming from a slightly poorer background, because often if you're having a child that a younger age, you haven't managed to complete your education, you might be more likely to be in a family that's struggling financially. So they over-selected for those younger mothers and they didn't want as many. They under-selected, if you like, for slightly older mothers who might, for instance, have had twins because they had IVF or something else, so maybe they had more money because they could pay for lots of rounds of IVF. So what they did was they tried to kind of recruit more younger mothers, who might therefore represent kind of poorer families, and less older mothers, who might represent more wealthier families in some cases. And that worked out really well in the sense that what they've ended up with is a really balanced sample. So they have a sample that is nationally representative in terms of its spread across those different socioeconomic strata. So we have people from the poorest. They're kind of more slightly more comfortably off all the way through to the wealthiest families, which is unusual. Most studies tend to have people kind of higher, like in the middle or higher end of the socioeconomic spectrum. So it's really nice We can really see what's happening across that kind of gradient, because we can assume things are worse at one end but they're not always And it's really important to see what's happening across that spectrum. So that's how they kind of went about selecting these twins from this bigger twin register that exists in the UK And the twins born in 1994 and 1995.
Professor Helen Fisher :And yeah, we've been following them ever since. So they first saw them at age five and they visited them at home And they spent a lot of time with their families as well as with the twins themselves. And then we saw them again at age seven, 10, 12 and 18 years And, as you said, we've just got money to it again and see them again at age 30. And a lot of the assessments were focused on really understanding the kind of emotional and behavioral well being of the children And, over time obviously then whether they started to have mental health issues. But also, what was it like living in those families, what was happening in the neighborhoods around them, what were their experiences at school. So yeah, trying to kind of capture kind of an overall picture.
Seiara Imanova:I want to just zoom out a little bit, talk about the different variables and factors that were collected throughout the study. So I know that throughout the years you have looked into things like obesity, even things like school performance and violence, victimization, neighborhood conditions, family environment. You know it's quite an extensive list. So, professor Fisher, what is your work focused on in these studies, mostly, and also just maybe a little bit about yourself and how you joined the research team.
Professor Helen Fisher :Sure. So a lot of the work that I do within the ERIS study is focused very much on the kind of victimization experiences that children and adolescents have had. So that's anything from now treatment within their family. Also look at bullying, their exposure to domestic violence, as well as just being exposed to assaults and mugging. There's presence on the street. So I'm really interested in when children experience have those types of experiences, what happens to them afterwards? how does that impact their mental health and well being?
Professor Helen Fisher :And a lot of that work has also looked at we know that probably about 40% of children who even had quite severe abuse or victimization don't develop mental health problems, for instance, by 18, what is it about them that seems to protect them? So we're really interested in trying to unpick what's helping those particular kids so that we can use that information to design interventions to protect other kids at risk. So, for instance, one of the fascinating things is that actually simple things like having at least one adult that you can turn to say something's not going right, can you help me? can be really really change the trajectory of what happens to that child who might have been abused. Just knowing that there's one person they can turn to seems to be really quite protective in terms of their mental health later. Or living in a community where they feel very supported and could perhaps go and talk to a neighbor or someone else to get help or someone might intervene. So those things, i think, are really fascinating.
Professor Helen Fisher :The other thing that I've spent a lot of time with my team in this study is trying to think about that kind of broader environmental information that's available. So we've, for instance, gone back and found what levels of air pollution, for instance, that children and adolescents were exposed to over time and had a look at how that might be associated with their mental health outcomes. So it's a fascinating data set. It's got so much rich information and we're so incredibly lucky and grateful to these families and twins that they've just allowed us into their lives and to look at every aspect of them, really, both by asking them directly but also by allowing us to look at what else is happening around them. We've even asked their neighbors about what it's like to live in those particular neighborhoods and areas as well.
Professor Helen Fisher :So we've really got a massively rich source of information and people can ask all sorts of different and really important questions with it, which I think is really helpful. So I came into the study. I was given the privilege to start working in the study just when the twins were turning 18 and we started to collect data then and I came in to really help think about how would we capture the kind of victimization experiences that they'd been exposed to during adolescence, and also about some of the slightly more unusual experiences they might be having around, perhaps hearing voices or seeing things other people don't, or feeling very paranoid about others, which we know actually are not that unusual. They're actually pretty common in the general population. But we were really interested. This is something that they've been asking the twins about since they were sort of 12 and we wanted to kind of see what was happening with how they were developing and thinking about the world in those spaces.
Seiara Imanova:Yeah, it's absolutely mind-blowing. As you said, there's just so much rich information and data sets. And I love what you said about protective factors. I remember she's also a professor at Kings. Her name is Professor Thalia E Lay. She also looks into epigenetics and she mentioned that one of the protective factors was just having a sibling, a sibling that you can turn to. That could be a protective factor against bullying. So it's very interesting that we usually think it would be something so drastic, right, But whereas sometimes very small nuances could actually be very helpful for us and it's kind of reassuring to see that. Yeah, absolutely, I don't think as you say.
Professor Helen Fisher :I think it's fascinating that actually it could be something that's actually really simple. I mean, sometimes it's not easy to implement and often, unfortunately, children who are quite so many bullies and perhaps Maltry to the home actually struggle to find anyone to support them, but it is something that would be very easy to implement.
Professor Helen Fisher :To make sure people like Becky are in schools actually to support. It's to have someone to turn to know that there's somebody there, and sometimes they won't actually go and say this has happened to me. They might just need to be near someone or know somebody's there, but it necessarily has to talk a lot about it. But I think that's something that's really crucial And, yeah, i think these things can really start to influence what schools do, what they've got on a policy level as well.
Rebecca Gray:Just having a trusted person or a person that you can confide in is crucial, really, and whoever that is and it might be a sibling, or it might be a teacher or a friend but just having somebody like that available.
Seiara Imanova:Absolutely Now. Becky, you're one of the project leads for the study along with Joe Henshey, I believe you mentioned And you've been engaging with the twins since they were five. That's so fascinating. That means you were one of the first people to actually interview twins and their families And I'm sure you have such fabulous insights that we can get into later on as well. But perhaps we can talk a little bit first about your role in this project and maybe also how you built a bond or like a relationship with the twins.
Rebecca Gray:Yeah, it sort of feels very personal because most of my professional career the twins have been sort of part of it, really sort of dipped in and out of the e-risk project through each most of the data collection phases. So I started as a research workup when the twins were five, so that wasn't long out. I wasn't long out of university and would go to the homes of the twins, do interviews with the mums, do assessments with the five year old twins and be part of their lives really, and we were in the home for sometimes up to four hours each time. I was there when they turned seven. So we'd often go back and visit the same families again And it's been such a privilege to be invited into people's homes and their lives and being involved in the ups and downs.
Rebecca Gray:Really, as you can imagine, there's been some.
Rebecca Gray:There will be sort of diagnosis of physical conditions for their twins, bereavements within families, difficult situations, but also celebrations of new births in the family, weddings and qualifications that they've gained along the way, just being part of that and just watching them grow.
Rebecca Gray:I wasn't there for phase 10 and 12 because I left to have my own two children but rejoined the project as a project leader when they were 18.
Rebecca Gray:So that gave us a new challenge of contacting our now adult twins, who had left the home possibly or gone to university or started out in their own lives as young adults, and recontacted them at that stage to see actually do they still want to be involved? And, very fortunately for us, we've been met with the same enthusiasm really that their mums have shown over all these years And we retain 90, i think it's 94% of the original cohort from phase five, which is incredible that we've had that kind of retention rate when we contacted them as adults. So it's been fantastic. And now back, we did a survey at phase 26 with them online. So we were back in contact with them online when they were 26. And it's just so exciting that we've received funding again to catch up with them and see how they're getting on when they're 30. Can't wait, really Can't wait, to catch up with them all and just see how their lives are.
Seiara Imanova:Thank you. That's so sweet. It's very sweet that you've built that relationship with them. It's funny. I was thinking out of curiosity did some of the twins you know at some point feel like they don't want to do this? But the fact that there is like a 94% retention rate is absolutely amazing, because I know from longitudinal studies usually the dropout rates are much higher. You did mention that you know when you visited the homes you were carrying out interviews and assessments and collecting data on the different phases. What kind of assessments or data were they exactly? Can you maybe share some of the processes?
Rebecca Gray:We would go out with two research workers would visit the home. So you would have a research worker to interview mum and then there would be a research worker who would see the twins carry out different assessments. You may need to help me hell. And on the different kinds of assessments, jog my memory. But sort of neurocognitive assessments with the twins We did a Barclay puppet interview with them to ask about their sort of behaviors and some of their attitudes And that's always really fun because you know they get the puppets out and they would talk to the puppets and it worked really well.
Rebecca Gray:When they were little and there were five doing that kind of thing, we would play games. So lots of the assessments that we did with the twins were based in games. Really to best engage them Stickers we took a lot of stickers with us to reward them. So it was a fun thing for them to do And we've still got twins that remember the stickers And I think at one point they were given t-shirts, coloring books as prizes, that kind of thing, just to make it a really fun experience for them.
Professor Helen Fisher :So I'm just going to add, i think, yeah, so many different types of assessments. I think the unusual thing about this study, and what's fabulous about it, is that for most of the phases they have been seen at home and in person. A lot of studies, particularly very big studies, often will send stuff in the post for people to fill out, or fill out an online survey now, and I think there's something really special about spending time with the families and really getting a sense of them but also the environment they're living in. So we would also have rated the research records, whether we're in or so got a sense of what the home was like. Did it feel nurturing? Did it look very untidy? What was what was happening? What was the street it was based on Like, what was the kind of general vibe in the home? So it was a lot happening.
Professor Helen Fisher :There was a lot of kind of interviewing, kind of asking questions, getting them to tell us about their thoughts and feelings. And for the mums, we also asked them just to kind of speak quite freely as well and recorded them talking about what they, about describing their children, which we've used to get a sense of their interactions with the children and their kind of emotional responses towards them. So lots of kind of interview staff, as Becky said, as the children were younger, more kind of interactive games, cognitive tests to get a sense of how they were performing in terms of their IQ and their spatial abilities all the way through. Yet. So see you doing slightly different assessments which were not directly with them. So we used, for instance, google Street View when they were in their adolescent years to get a sense of other people, looking at the kind of rows that they live in and what did they look like and rating those. So we've used lots of different types of techniques. We've also got we've got teachers during the when they were at school to rate how they were behaving and forming at school and interacting with other kids.
Professor Helen Fisher :We've got neighbours on the street They were living in to give us a sense of their perception of what that neighbourhood was like. And we also collected biological samples from the children and the mums as well. So we get a bit of a sense just not to not just of their, their kind of genetic profiles, but also how their genes are being regulated and we know that changes over over time and also things like inflammatory markers. So we've heard a lot about those in the pandemic. They tend to kind of increase. Our information increases when we, when we get a cut or we're exposed to an infection. But we know it also changes when we're exposed to kind of stress. So we can also see how that's biologically there They're changing and even for the genetic identical twins we see massive differences in their gene, how their genes are regulating the knock on effects on their hormones and everything else over time. So fascinating kind of different levels and aspects of their lives captured in quite different ways.
Seiara Imanova:I'd love to actually go into some of the findings of the study and, because there are so many variables and factors that were considered, maybe we can give just an overview of what were the main outcomes that were measured and also if there were any surprising or counterintuitive discoveries that emerged from it, challenging what was commonly held or assumed.
Professor Helen Fisher :Yeah, absolutely So. I guess it's difficult to think about the main outcomes. I guess a lot of the the kind of outcomes are mental health related. I guess there are so many. But I guess what I was thinking was just to give you a bit of a flavour of what some of the of the hundred fifty papers have found. So I guess thinking about my own work, as I say, is some really interesting stuff on the impact of social support, for instance, as a protective factor even amongst really severely victimised kids, but also some of the work we did on showing for the first time in a lot of ways that actually exposure to quite high levels of air pollution when you're walking about or to school or go into work or on the tube were actually associated kind of across the spectrum with mental health outcomes in young adulthood in this cohort. So we know air pollution is really associated with physical health issues We breathe it in, we know it's going to affect our lungs and our cardiovascular system, but we did also find that it seemed to impact people's emotions, how their brains were working, and seemed to have a real impact on their mental health really across the spectrum. And the exciting thing about that is we know there's a big drive in the UK and other countries to really reduce air pollution because of its impacts on physical health. But actually the findings that we had also we used then in the House of Lords to really push for even quicker reduction in air pollution levels in the UK, just because it's also impacting on mental health, just to kind of add weight to that argument. So our findings have been used in those sort of ways.
Professor Helen Fisher :I guess also some of the work Terry Moffitt has done in this cohort showing that really early indicators of how much self-control a child has. So do they, if you offer them a marshmallow now or tell them to wait 10 minutes and they can have two, do they take them one now also not have much self-control? Can they wait for that 10 minutes and then and then have two later? So that level of really early self-control or self-discipline that someone has, that we have been shown to have really big impacts on their educational attainment, on their mental health, on their physical health, how they interact with other people over time and how they prosper. And that information was used not actually in the UK but in Singapore and in Denmark and actually changed some of their school curriculums. So they're actually focusing more on enhancing those kind of self-control abilities in children earlier to improve their outcomes later. So there's been some great things that have happened within the cohort that have really had a huge impact in the real world.
Professor Helen Fisher :I guess one of the thinking about surprising findings one of the really well-established findings in the literature has over the past couple of decades has been that early childhood abuse is associated with problems with kind of cognitive decline later.
Professor Helen Fisher :So people tend to do worse at school, they tend to have more difficulties cognitively over time and that's quite well established.
Professor Helen Fisher :But because of the longitudinal nature of this type of study, we were able to explore that but take into account what actually was the cognitive ability of the kids before they were actually exposed to abuse and what we showed, if we took that into account, was that actually they already had a lot of cognitive difficulties before the abuse occurred and it was that that meant they had more cognitive difficulties later, not necessarily the abuse itself.
Professor Helen Fisher :So I think that was quite surprising that actually sometimes there are things that were already problematic for kids and other things happen to them. They probably make things worse and they definitely make lots of other things worse in their mental health and other spheres, but actually being able to really get a little bit closer to what's happening. And that helps us because actually, if there were cognitive problems earlier, we need to be targeting those kids, really supporting them both in terms of improving their cognition, but also to prevent them from being exposed to abusive situations as well. So there's a lot we could do to really make them resilient earlier. But if we didn't know that, we would just be worrying about it much later or perhaps too late to do anything about it. So, yeah, i think there's all sorts of different things that have come out, but that really gives you a little bit of a feel for it.
Seiara Imanova:Absolutely fascinating. You mentioned the marshmallow test. I was actually speaking to a lecturer from Harvard. His name is Dr Stephen Farone. His work is primarily focused on attention deficit hyperactivity disorder and I know the e-risk study has also done quite a number of studies on ADHD and he mentioned that kids or children who were the ones to pick up the marshmallow immediately usually showed higher correlations with ADHD. But I know that you, the e-risk study, also looked at executive functioning for kids with ADHD and without ADHD and a couple of other findings. So I'm curious to know along with ADHD and perhaps maybe some other disorders like anxiety and also conduct disorder, have you found any correlations with factors and over time?
Professor Helen Fisher :Yeah, I mean, i think one of the key things that's come out of this study and many other studies is that actually quite a few of the risk factors for these different types of mental health and behavioral issues that children, adolescents, experience are actually very similar. So abuse, for instance, even the air pollution work that we've done, the interactions between the parents and the children very early on in childhood as well All of those things seem to actually be associated with pretty much all of those different types of mental health and behavioral issues, which is some specificity. But actually quite a lot of things seem to be, at least on the environmental side, very, very similar. You see some differences in terms of, perhaps, some of the genes that might be involved, but even then there are so many thousand genes involved in putting someone potentially at risk for some of these things that it's quite difficult to start distinguishing between them. So I think the picture is quite broad. I think there are lots of different things that are happening and we're still trying to dig in to really understand what is it that might mean that one particular child moves in a trajectory, one particular type of mental health or behavior issue rather than than another, and I think that's still relatively unclear. We just know that there are lots of those issues at the beginning, that if we could really tackle them and support kids in a better way, either to prevent them experiencing them or to deal with them better at the time, that we can actually put in quite a wide range of different things.
Professor Helen Fisher :But you touched on ADHD there and I think that is one of the really exciting and perhaps controversial things that came out of this study and that was worked by Jessica Agnew-Blaze, who really showed in this and then subsequently in other studies that actually it was.
Professor Helen Fisher :There was a group of our twins who actually were first diagnosed and kind of met criteria for ADHD when they reached AT and they hadn't, because we've been assessing it all the way from from five onwards they weren't actually meeting those criteria much earlier.
Professor Helen Fisher :They seem to kind of be a subgroup who suddenly started to seem to have those experiences much later on and that, i think, really challenges the idea of ADHD as a real kind of childhood onset disorder and we know obviously most people will develop it in childhood. But I think there hadn't been a lot of focus on what about late. At most people thinking about ADHD and adulthood would have assumed that they've had it since they were children and therefore all the intervention services and services should be focused really in that very early period. But this work starts to suggest that there is a small proportion of individuals who won't develop it until much later and that actually it's really important to think about what services are available for adults who might be presenting for the first time with ADHD or might still have ADHD from when they were children. So I think there's been a real move of sense to really think about about that.
Seiara Imanova:Is there a reason for that? Have we managed to pick up any patterns on why some may develop it later on rather than earlier on?
Rebecca Gray:Yeah, so with certain twins it was probably more difficult to keep their attention. So we would obviously assess for things like ADHD, but trying to keep those children on track with some of the cognitive tasks and the gains and some of the difficulties just seeing in a very short period of time some of the difficulties, even at age five, that some of the twins would experience, and just how then that could translate to difficulties at school, and just how important it is to remain positive with these children to keep them motivated. And also self-esteem has a huge part to play in how they feel about themselves and generally, if children feel good about themselves, they're going to want to be involved and are motivated to be involved in an activity. When they don't feel good about themselves, they won't be motivated. So it was about sort of keeping up that their self-esteem and their excitement with the challenging tasks that were put in front of them.
Seiara Imanova:Yeah, in terms of self-esteem. Professor Fisher, i know that you focused on bullying and victimization. I would be interested to know a little bit more about your findings on that.
Professor Helen Fisher :So certainly showing that being exposed to lots of different types of victimization is unfortunately associated with pretty much all mental health and behavioral problems going forward. So anything from what you might expect in terms of those children were more likely not all of them, as I said earlier, but more likely to experience depression, to have psychotic experiences such as as hering voices or being paranoid, both at kind of early adolescence, at 12, but also at later adolescence, at 18. They were more likely to have anxiety, but they were also actually more likely to have ADHD, for instance, to have kind of conduct sort of kind of behavioral problems as well. So it wasn't kind of restricted to kind of the the normal types of mental health issues we might expect victimized children to experience. It really was quite across the board. But, as I say, i think the the other fascinating thing about about that work is not just that we can start to see some of the kind of impact on someone's biology and how, for instance, that level of stress that they're expressing seems to be starting to change the way their genes are starting to regulate things, to change some of their inflammatory processes which, again, we wouldn't normally think about. We don't think it has to be quite a physical thing, but actually that real experience of stress, that feeling, the physiological feeling as well as a kind of emotional experience really starting to change their biology and how it's working underneath the skin as well, i think is really fascinating.
Professor Helen Fisher :But, as I said earlier, i think the really exciting thing and the really hopeful thing was that there were at least 40% of those kids who experienced multiple types of victimization might have been bullied at school, matrioted at home, exposed to domestic violence, lots of other types of experiences who actually didn't develop these mental health problems.
Professor Helen Fisher :So they were more likely to, but not all of them did by any means. And I think, as Becky was saying, i think that's the really hopeful and exciting message from a lot of this work is that actually you shouldn't write children off. You shouldn't think, okay, this kid's been bullied and comes from a really bad home, that's it. There's no point in trying for the rest of their lives. Actually, there's a massive point in trying because they could do all sorts of things later. It's not a deterministic thing. There's so much possibility And, as we said earlier, really simple things like having a supportive person around, whether that be between or sibling or someone else in their family or often someone outside of the home. So someone at school could make a massive difference to those kids And they can go on and achieve all sorts of things as well as feel really good about about themselves later. So I think that's really, really key.
Seiara Imanova:I'd like to talk a little bit about the influences of genes and environment, the interplay between nature and nurture and shaping children right. I think it's safe to say. Now the field of epigenetics has put the whole nature versus nurture debate aside, as we know that it's it's the interaction or the correlation of these two that can predict certain you know phenotypes or certain behaviors. Have there been any key insights that have emerged regarding the interplay between genes and environment and kind of shaping the twins' behaviors or any form of outcomes?
Professor Helen Fisher :So I think one of the key things, as you say, that comes out of this study and many other studies is is really showing that it is a real interplay, that it isn't. You know, it isn't predominantly genes, it's not often predominantly the environment either. It really is that that intersection, that that someone's often bringing some genetic liability to a situation, either because they're perhaps putting the genes, are putting them at slightly at risk of developing a particular mental health problem later, or responding to an environment in a particular way And then, when they are that kind of, is influencing what might be happening with them later. So I think it's a study that adds to the literature in terms of thinking about that real interplay, rather than it can only be one or the other. It clearly isn't interplay And, as you say, i think epigenetics has given us an opportunity to think not just how genes might influence how we either are exposure or response to the environment, but also how our environment might get in and also how our genes actually are regulated.
Professor Helen Fisher :So we know that we're not altering the actual kind of DNA, not altering the code of our genes, but we know that there are constant processes happening within our body that decide when certain genes are turned on or off and how they are regulated. So that happens, for instance, when we, at a certain age to start going through puberty, something internally in our body is deciding that, okay, this cell set of genes are going to be switched on and send off a cascade of hormones. And this is a very natural process that happens in our body all the time. And a lot of our work and other people's work has started to show that the environments we're supposed to do and pollution would be a more obvious one because we're actually breathing some kind of toxin in But even the stress such as bullying or exposure to domestic violence, that feeling of stress can actually start to impact and can start to impact how those genes appear to be regulated. I think in this study particularly, what we have tried to show is that we know that actually, even that regulation of genes, those epigenetic processes. What we found in this study is that we can see that actually children who've been exposed to victimization even in adolescence so when a lot of processes are already kind of starting to be set that actually that those experiences of victimization do seem to be associated with some of the changes in the regulation of our genes, which has huge knock-on effects for hormonal regulation, for all sorts of other things that are happening biologically in our bodies, how our brains are starting to potentially function and everything else. So we see that a little bit with kids who've been exposed to very early abuse and start to see that with children who are victimized during that adolescent period as well, and we also see that the kids already have mental health issues, do see to show these changes in how their genes are regulated. And that's even when we look within those identical twin pairs. So part of those epigenetic processes are influenced by our genes as well as what's happening from outside. And so if we can completely control for those genetic effects by looking at twins within an identical twin pair, then actually we see that even then those environmental factors are starting to have an influence, and that's from both different types of victimization but also just from living in a deprived neighborhood as well, we see those differences And that, i think, is fascinating to get a sense of how all that those environmental expressions are getting under the skin, what they might be doing biologically.
Professor Helen Fisher :But it also is a kind of hopeful thing because it also suggests a lack of kind of genetic determinism in that actually if negative things can get in and change what's happening to us internally, so can positive things. So often we there's an idea of something called differential susceptibility that's basically impluous and have really pushed, which is that those who have the most kind of emotional but also biologically internal kind of responses to negative environments also with the kids who will respond most to positive environments as well. They're just generally responsive to environments. So that also suggests that actually if you could really get in more social support to someone's environment or they go to therapy or something else is happening that actually they might respond particularly well to those and that could really have a knock on effect and actually also how some of those biological processes are turning out, which could have a massive impact on their future mental health and cognition and all sorts of other things.
Seiara Imanova:I absolutely agree with you, Professor Fisher. I think I find it more hopeful than not. It actually gives you the ability to say okay, I know that my environment can impact and can dictate whether I'm genetically susceptible for X or Y. I still have the power and the ability to change that through positive behaviors and et cetera. And we've seen such shifts happen all the time People who've had chronic diseases. They create a huge shift in their lifestyle and all of a sudden you see that those disease could be reversed. Becky, I was actually just wondering have you noticed, because you were visiting the twins in many different stages of their life, at different ages? was there ever a shift in the environment, let's say, from 5 to 12 to 18, and then did that shift create any changes in the personality or the behavior of the twins? Have there been such incidences?
Rebecca Gray:It's a tricky one to answer just because there are so many twins and actually I've probably seen two or 300 at different phases, but not necessarily the same twins. So it's a difficult one to answer because we wouldn't necessarily follow up the same one that might be seen by somebody else, and actually even remembering the individual stories is impossible. There are certain families' stories that stay with you that you do remember, but yeah, that would be a difficult question to answer really.
Seiara Imanova:Professor Fischer, i really wanted to ask you about one of your published articles. I think you published it a few months back and I found it such a fascinating paper. It was called the general factor of psychopathology choosing among competing models and interpreting P. I wanted to talk a little bit about that paper and from what I understood, is that it focused on how we look at mental health disorders and evaluate them, meaning we look at them in discrete factors or separate entities, because a lot of the variables that was looked at in the ERAS study were things like depression or anxiety or ADHD, etc. And, from what I understood, this paper argued that we need to move away from that argument and focus more on studies that establish more clear criteria for diagnosing mental disorders and basically gain deeper understandings of aspects of shared mental disorders as well, because I know the study may have found a lot of comorbidity between disorders, whether that's through genes or other behavioral symptomology. Do you mind getting into that a little bit?
Professor Helen Fisher :Sure, so I guess, yeah, there's quite a large movement I guess over the last sort of five to 10 years to really start critiquing the approach we take, at least in adult mental health. And that's not quite the same in child mental health. But in adult mental health we've for many decades kind of tried to pigeonhole people into okay, you have depression, or you have schizophrenia, or you have PTSD or you have bipolar disorder, and that has many uses. It's very helpful to decide. We think the treatments that someone might benefit from are those different clusters of symptoms that we call a disorder. It'd be helpful if you can categorise people and say, okay, well, if you've got this, then you probably should have that treatment, and that's very helpful. And that's how services are often developed. We have sometimes broad services but we often have very specific services, people with psychosis, for instance, which have a very particular model of working, particular treatments that they use. So there are many advantages to having kind of categories. It could be very helpful.
Professor Helen Fisher :But I think people have increasingly noticed that if you look in, particularly in these kind of general population longitudinal studies, when you're following the same people over time, that actually most people will experience more than one of those categories of diagnosis over time, normally multiple if you follow them much further into the life course than we have. So we have a sister study, if you like, which is not twins but it's based in New Zealand and they've been following them up now to age 52. And they've seen that between 80 and 90% of people have multiple diagnoses across their life. So just because I have depression now, does that mean that particular treatment is helpful for me if in five or 10 years time I'm going to have schizophrenia or something else? So people will have multiple diagnoses across their life course. But even at the same point they're experiencing a particular diagnosis, they'll often have symptoms of other types of disorders as well. So it's not uncommon to be experiencing depression but also be hearing voices or to be feeling very anxious about going out and various other things. So I think a lot of those things have started and also, as we said earlier, a lot of the risk factors for developing these things are very similar. So abuse might be some combinations of thousands of genes, for instance, in environments that we live in, all sorts of other things.
Professor Helen Fisher :So it can be quite difficult to really in real people separate people into these categories. It makes a lot of. It's very neat and tidy and helps us think about services and other things. So it's very unusual for someone just to come and present with very, very clear set of symptoms And even within something like depression you could have people still be diagnosed with depression and present in 30 or 40 different ways and they'd still get the same diagnosis. So we're not really sure that they're really based in reality. So there's kind of a movement in the last five to 10 years towards thinking about maybe we should be thinking instead of these very discrete categories in a kind of more dimensional sense that someone might be higher on some types of symptoms and maybe slightly lower on others and then higher on others. So to kind of create more of a profile of kind of a spectrum of symptoms that someone might be experiencing and to really then think how would you tailor treatments and interventions to kind of deal with their more kind of individualistic experiences rather than, okay, they kind of just about meet the criteria for depression, let's just shuffle them down that route and that'll be fine. We know that might not work. So there's a real movement in that sense And the interesting thing about a study like e-risk is that we've collected data on different symptoms that people experience from a lot of the major mental health disorders or categories And we can use those to say this person meets criteria for a particular disorder based on, for instance, the diagnostic and statistical manual in the US for instance.
Professor Helen Fisher :So they meet criteria for major depression. But we can also use those symptoms and let them up and see how they match up statistically, for instance, with the anxiety symptoms and make it the eating disorder symptoms and the PTSD symptoms and create a kind of overarching dimension of internalizing symptoms, for instance things that seem to hang around, kind of emotion and mood and other things. And you can kind of do that for various types of symptom combinations And people have shown this in lots of different studies that this kind of makes sense and that actually those different types of factors seem to lead on to a very broad factor which is called biophysiocalcaspia and others called the PFAC. So it's kind of just indexes generally someone's kind of general psychopathology, their general mental health issues, across that kind of really broad spectrum of symptoms, disorders, however you want to think about it, and actually it's probably there that we should be really focusing our efforts on understanding what predicts whether someone has a very high score on that very general measure of mental health issues And what we might do to support someone who is having those experiences and try and bring them down that spectrum.
Professor Helen Fisher :So I think it doesn't have to be a kind of one or the other approach, but at some point I think we need to recognize that we can't literally put kind of very artificial categories on everything we need to do.
Professor Helen Fisher :Really, we really want to capture people's individual experiences.
Professor Helen Fisher :We need to think about but they're going to have some symptoms of one thing, some of another, and how does that come together and what might we do to both understand how those things develop but also how we might treat them.
Professor Helen Fisher :But yeah, so the paper that came out recently is looking at the fact that even within that idea of those kind of dimensions of different types of symptoms and experiences, there's a lot of argument about how might you do that And that's healthy. It's important to think about if you're going to create a kind of new approach to doing something, how might that work and what's the best approach. I think the point of that paper is, rather than just fighting about, can I do a slightly different statistical model to you and what might that mean that we should probably kind of embrace the broader concept of the idea of these dimensions of mental health and then think about how might we better kind of measure them and capture them to really inform what's the best way to think about this, rather than just applying lots of different statistical tests and trying to work out what works best, which is important but not probably the key thing we should be doing.
Seiara Imanova:That was so beautifully said. It really resonated with me because I do think people are very complex. We are not black or white. It's very difficult to, as you said, diagnose some with a discreet and symptom and that's it. That's what they are, because we know there's so much complexity within that. As you mentioned about the e-Restudy, it actually showed things change over time. Over a period of time for a person, it can be from one spectrum to another. It could completely go away. It could be triggered by a traumatic event. It could be healed by a loving partner. It's very, very individual. Becky, professor Fischer, i wanted to ask you both has your involvement in this study influenced your own understanding of the factors that contribute to behavioral and psychological problems in children and adults? Even just the way you view or live your life has being a part of the study, because you've been a part of it for such a long time. Has it just impacted the way you look at certain things? It doesn't have to be anything big, but I'm curious if it had any impact.
Rebecca Gray:I think for me being part of the study from phase five and seven has almost determined career-wise where I have been and where I wanted to be, and that's certainly within working with children and supporting children and supporting children with their mental health and with their access to improving their outcomes and improving outcomes through education. Also, when I became a parent myself. It's not clear-cut nobody is the perfect parent. No family home is the perfect home, and just having an awareness of what's important for children and a sense of belonging and a sense of unconditional love and that kind of thing is certainly something that I've taken from the families that I've met, and struggling families, even families that are living within extreme difficulties just how well they're able to parent under very, very difficult circumstances. I remain in awe, really, of our mums of twins, because sometimes it's not just the twins they have. They may have many other children as well. So it's in awe of our families really.
Seiara Imanova:Wow, that's so beautiful.
Professor Helen Fisher :Thank you, for sharing that. It's amazing how much impact that's had on your life actually, becky, and what you've decided to do. It's fascinating, so that's something to think about. That impact I'm so lucky that you keep coming back and helping as well. I think quite different from me.
Professor Helen Fisher :I obviously came into this study much, much later than Becky and in the very different roles, and my role initially was to analyse the data.
Professor Helen Fisher :I think one thing that being involved in this study has done and even when I was analysing data, i was there during the data collection phase when the twins were 18 and sat in the meetings and listened and I didn't take part in the collection of the data, but I rated a lot of the victimisation data that was collected and some of the mental health data And I think what it really being involved in studying like this really gives you a renewed respect for people in their lives.
Professor Helen Fisher :Firstly, that they allow us such an honour and a privilege, that they allow us into their lives and are so honest and give up so much of their time and everything about what they do and let us share that, i think is amazing And I think it really gives you respect to someone who often, just you know, i said a lot of my day back then. I would have sat with a computer with just lines of data but adjust data And I think when you're really engaged in a study like this, you really understand that each of those pieces of data is a real person.
Professor Helen Fisher :So much happening, and she's had so much complexity, so much hope for a lot of people that a lot of what I do in the past is very much focused on. Oh my gosh, this person's had horrible experiences. Horrible things are going to happen to you, though, and it's really opened up my eyes that there's so much you could do, so much hope for people that have experienced really awful things. That it's, yeah, i think, really fascinating. I think the other thing that being involved in study has changed for me is that, because we have so much rich data, it really allows me rather than looking at kind of one or two things that I think might be involved in someone developing mental health problems or might be protective, really gives me the opportunity to, as you were saying earlier, to look at the kind of whole person.
Professor Helen Fisher :What is it? Not just what's happening inside someone, but also what they're thinking and how they're behaving, but also what's happening in their family environment, what's happening in that wider neighbourhood space, how are all those different things because we have that data to use, which is fantastic how can all those different things, what's the interplay between all of them and that person's own genetic makeup really shape that person and what can happen to them. I think so. For me, it's really broadened my horizons and the research I do to be much more interdisciplinary and think across lots of levels and think about what else can we do. And I guess, in another way I've gone from being involved in a very small way to using some of this data to now taking over the amazing task of working with Becky and Jo and a huge team of people to go back and see these twins at 30 and such a privilege to see. So looking forward to seeing what they're doing now and how things have changed for them, what's happening with them.
Seiara Imanova:That must be so exciting for you guys, little reunion, you know. I'm sure it's just going to be so great When we do studies. Well, when you do studies like this, one of the main goals, of course, is to be able to move from bench to bedside right From being able to take this research and apply it to the real world. You mentioned a few earlier, but I'm wondering has the ERA study already fostered any form of collaborations with researchers, universities, schools, policymakers, to kind of address some of the findings or the challenges, misconceptions that were found in the studies?
Professor Helen Fisher :So yeah, as I said earlier, i think the ERA's been used in lots of different ways. So, as I said, both within House of Lords, to back up, it uses evidence for reducing air pollution levels much quicker and changing some of the school curriculums in different parts of the world. I think some of the work we've done and we've had very close collaborations within the team that work on ERAs at different phases You often work clinically as well, so people have been able to take some of the findings, for instance, about realising there are actually quite high rates of trauma within children and young people in the general population, but actually they're not accessing services. There aren't really services often that they can use, and one of our colleagues in the study works in that space And so actually it's really influenced how he's developed the services nationally to support children and young people that have been quite severely traumatised. So I think there's some really nice things that are happening there. I think, in a broader sense, the study is mainly being set up to answer quite specific research questions and we've just happened to capture such a wide breadth of things that people can answer all sorts of things with this work And actually for the, when we're going back to see the twins at age 30 now, which is also funded by the Medical Research Council again, actually, the aim of that is just to try and capture as much data rich data as we can on their lives, with the idea that actually researchers from different perspectives and different parts of the world could really look at that and think how they might use it to influence policy, to influence services and practice and schooling and workplaces and all sorts of things.
Professor Helen Fisher :So we haven't at this point developed collaborations for the data we're collecting now.
Professor Helen Fisher :We're really that's kind of our aim for towards the end of this particular grant is to start encouraging other people to think about how those would work, and there are some great mental health networks and other things around the UK that we can get.
Professor Helen Fisher :Start kind of harnessing and pushing through to get people to do that. So we're excited about the possibilities of what this might mean and what it particularly for the data we're collecting at age 30, what it might mean in terms of what people could think about doing to ensure that, no matter what a child or young person has experienced, that they can really thrive at this really crucial point in adulthood what happens to them at 30, how well they're doing both in terms of their mental health and physical health, whether they feel in a really stable financial situation or not. It's really going to set them up well into midlife and tell us how well they're going to be doing. So what can we learn from these kids and all the things that they've experienced in the past three decades that will really allow us to put policies and support and interventions in place to ensure that all young people can thrive going forwards?
Seiara Imanova:Wow, absolutely amazing and such important work. I'm curious is there an end date to this study, or does it just depend on funding?
Professor Helen Fisher :So unfortunately we are. It is expensive business to collect data on these twins.
Professor Helen Fisher :We need quite a large team of individuals to allow us to do that. So, yeah, so the current funding is for four years, so it will end in 2027, but we're always keen to go back and see our wonderful twins as they grow older, and each time we've seen them we've had to get new funding to do that. So I guess that's six grants already, so, yeah, so we'll continue to apply for funding and we hope we'll be able to see them at 35 and beyond as well, just because I think, as we've got so much rich information on them, they've given up so much of their lives and led us in to see so much of what's happened to them. It would be a bit of a travesty really not to kind of build on that and keep following them and seeing what happens as they continue to grow up.
Seiara Imanova:Professor Fisher, Rebecca, as a final question, I just wanted to conclude by asking what's next on your journey and if there's any key takeaway or anything that I miss that you would like to share, please feel free to do so as well.
Rebecca Gray:So I think one of my biggest tasks now for the next few months will be trying to get back in touch with all of the twins. Some may have made contact at the Phase 26 survey, an online survey, but some of the twins we haven't actually had contact with since they were 18. So perhaps lots of movement geographically they may have done. So just getting back in touch with everybody, really just trying to get everyone back on board with us and just to say, hey, we're still here, we'd love to come and see you, we'd love to come catch up with you and see how you're getting on.
Professor Helen Fisher :So that's what the project leaders will be doing over the next few months, Yeah, I think we're just so excited to hopefully be able to speak to as many of the twins as we can to see how their lives are planning out at age 30 in the next few years, And one of the I think one of the really exciting things about what we're doing differently this time is we're also working closely with an organisation called the Mepin Foundation, which is a foundation set up to ensure people with lived experience of mental health issues are really involved and at the heart of research that's done about them, And so we're working really closely with them and their young people's network so that actually young people's voices are really central to what we do in this study, both what we decide we're going to assess how we're going to assess it, And also they're going to help us set priority questions for the other researchers who will use this data in the future.
Professor Helen Fisher :To kind of say, from their point of view, what should those researchers be asking? People could ask for sorts of things in this data, but they're going to create a real priority list of questions to say these are the things that us, as young people and often young people, you have their own lived experience of mental health think of the really important questions you should spend your time and money answering with this data. So we're really excited to be working with them for this phase and really ensuring that lived experience voice, that youth voice, that mental health experience voice is really central to what we do and really comes through in deciding what we assess but also what this amazing data is useful. And I just wanted to finish by saying again to echo what we said earlier, which is it's just such a privilege to work on a study like this and just eternally grateful to the twins and their families for letting us into their lives and asking all sorts of things, probably bringing it to every corner of what they're doing.
Rebecca Gray:Yeah, just trusting us with their stories, really their individual, their very personal stories.
Professor Helen Fisher :It's a real honour to be able to bring those stories together and use those to really get a sense of what is happening to young people over time and what could we really do to better support and thrive, to allow them to support them to thrive, no matter what they're exposed to and where they might be bringing to that situation genetically, what environments they might be exposed to. How can we ensure everyone of them is able to thrive on that much greater level? So yeah, so a real honour. And also such a huge number of people that have been involved in both Tami and Afshan in terms of creating this study but all of the researchers and everyone else that's been involved over many, many years has been hundreds of people that have really allowed this to happen. So, yeah, it's a real privilege and an honour.
Seiara Imanova:Professor Fisher, rebecca, thank you so much for your time. It was an absolutely awesome discussion. It's been so helpful to reflect on so many things that you guys had both mentioned, and so interesting as well. As I said, i can't wait to see more of the findings and outcomes as the twins approach 30. Thank you for your time.
Professor Helen Fisher :Thank you so much. Really exciting to be able to talk about the study and, yeah, please watch this space.
Rebecca Gray:Thank you, thank you for having us. It's been a pleasure.
Seiara Imanova:Thank you everyone for tuning in and listening. If you did like this episode, please don't forget to share with your friends and family and subscribe on your favourite podcast hosting site to keep up to date with upcoming episodes. I will be linking Professor Fisher's work, along with the eRisk study website and Twitter, to this episode description, so if interested to learn more about this fascinating study, its contributions, publications and much more, you may do so by following the website and the pages as well. Thank you again and we'll catch you in the next episode.