On a First Name Basis
A show dedicated to telling the human side of the stories surrounding the research at Boise State University.
On a First Name Basis
Leslie Ordal: From DNA to Decisions
Leslie Ordal's work as Clinical Assistant Professor and Assistant Program Director for the Master's in Genetic Counseling program at Boise State University bridges the gap between complex genetic science and practical healthcare decisions for patients and providers. She shares her journey from early social media adopter to helping create the first fully online genetic counseling program in the United States.
• Genetic counseling helps people understand and adapt to how genetics affects their health during critical decision-making periods
• Boise State's program supports rural healthcare by training counselors who can work remotely and create resources for far-flung providers
• Social media played a surprising role in Leslie's career path, starting with early adoption of platforms like LiveJournal and Twitter
• Student capstone projects focus on creating practical resources like infographics for doctors and children's books about rare genetic conditions
• ReadingFrame.org, created by a student, serves as an online repository making books about genetic conditions accessible worldwide
• The field addresses the challenge of helping doctors identify genetic conditions when they can't possibly keep up with all genetic advances
• Leslie lives and works remotely from Toronto, Canada, demonstrating the program's commitment to the virtual education model they teach
If you're interested in finding a genetic counselor in your area, visit findageneticcounselor.nsgc.org to connect with qualified professionals who can help navigate genetic testing decisions.
Welcome to On a First Name Basis, a podcast where we dive into the stories behind Boise State scholars. I'm Dr Chris Saunders, but please just call me Chris. I'm a faculty member here at Boise State and I'm excited to share with you some of the amazing stories of my colleagues, their journeys, the challenges they've overcome and the connections they're building right here in our communities. Supported by the Boise State Division of Research and Economic Development, this podcast is all about getting to know the people and their work. Join me as we explore the human side of the innovative blue-turf thinking happening at Boise State. Let's get to know each other more on a first-name basis. On this episode, our guest is clinical assistant professor Leslie Ordal from the School of Allied Health at Boise State University. Leslie is also the assistant program director for the Master's in Genetic Counseling program, which we will hear a lot more about later in the show. Welcome, leslie.
Leslie:Thanks, chris, I'm excited to be here.
Chris :And when you say here so you're actually not here. So this is the first time where someone has not actually joined me in the sound studio at Boise State. Leslie is zooming in from Canada and you're not just there for a visit, are you?
Leslie:No, I actually. I live and work full time from Toronto in Ontario, and I have since I started the program at the program in 2019.
Chris :So you are, you are fully, fully remote, about as remote as you can get. I know other remote employees, but you're about as remote as you can get.
Leslie:Yeah, I think I'm one of maybe two employees in Canada at Boise state that I know of. So yeah, I've been in Canada since 2007,. But I'm actually originally from Oregon.
Chris :Okay, so you have a connection to the Northwest. Now you've been living in Canada for a while and you also are dual citizen, correct? That is correct about Canada, then is it the same kind of process for naturalized US citizens, where they end up knowing more about the country that they've naturalized into, or is that process similar?
Leslie:I don't actually know about the US side. The only thing I knew when I came up here was that everybody told me it was easier to emigrate to Canada from the US than the opposite. So I think there's probably a lot more wait time and paperwork. But I did have to study for the citizenship tests and know things like what is the main export in Alberta and I don't remember now whether it was oil or beef, but those were the types of questions on my citizenship.
Chris :That's what I was going to ask him Like. So what did you learn about Canada? That we should, that we should all know, and in our previous conversations what I learned is that what I didn't know is that they don't have governors, you have premiers.
Leslie:Premiers? Yes, so I often, and it's funny because you know I do a lot of in my in my job as a genetic counselor, which I can explain a bit about it. It's all about making communicating difficult science concepts into easier to understand language for people, because they often have to make a difficult, you know decision about their medical care. So I often have to think to myself, am I talking to Americans or Canadians? But I'll say, oh yeah, premier, that's like a governor or a writing, that's like a district prime minister, like a president.
Leslie:So, there's fortunately a lot of equivalencies that I can just sort of easily translate over, and then when I'm talking to Canadians, I have to flip it around.
Chris :Now, whenever you talk to people that live in another country, right, the accent comes up, right and Americans have a very we have an idea of what that Canadian accent sounds like. And there are a few times where I'll be like I hear the Canadian accent and what you say, but most of the time, most of the time, I I don't. Do you, do you find, do you talk differently when you talk to people, like in your job and you're talking to people in the States, versus when you're just around town?
Leslie:Yeah, and I I've always had this tendency to kind of pick up the accent of whoever I'm talking to, which I have to be really mindful of, because it happens kind of automatically and people will think that you're kind of making fun of them. So I have to really think about it. However, now that I'm a citizen of two countries, if they hear something funny I could be like oh sorry, that's just my Canadian accent coming out.
Chris :So what's funny is and again, this may be just coincidence the only time I've heard your Canadian accent is when we're talking about Canada. So that Canadian portion of your brain, I think, is activated. It's activated.
Leslie:Yeah, it comes in and it's like, oh, we're talking about Canada, eh, talking about.
Chris :Canada. Yeah, see there, and that's that's. That's that's what I, I hear in my, in my head as a Canadian, as a Canadian accent I would. So when I went to graduate school in Arkansas people are always like, oh, you're going to pick up the Arkansas accent. What I realized is not everybody in Arkansas has the same accent. But when I talk to people with that very kind of that Southern drawl, I would slip into that Right. I'd say, you know, I'm going to go fix it, I'm fixing to go do something at all, and that became natural. And then I'd come back here where I think that no one has an accent, and then and and and like, oh, that's that's, that's, that's different.
Leslie:Yeah, I, I pretty much anytime I travel to the States I come back and my husband's like you. I pretty much anytime I travel to the States I come back and my husband's, like you, sound so American. And then my mom is actually from the South. She grew up in Kentucky, in Appalachia, and she worked really hard to get rid of her accent because as an adult she moved to the North and it was not really well. I mean, it was discriminated against. So she worked really hard to lose the accent. But I always knew when she was mad as a kid because the Southern accent would come out and I'd be like oh, I'm in trouble now.
Chris :I'm serious. This is
Leslie:Mom is serious.
Chris :I grew up in the panhandle of the state and people are like oh, like there's an accent there, and growing up I thought it was pretty neutral. And then I hear some parts of the state and I go, oh yeah, there's, there's some there. There, there's certainly some some variety.
Leslie:Distinctions yeah.
Chris :So you said, though so you grew up in Oregon.
Leslie:Yes, I did.
Chris :Whole time, most of the time.
Leslie:Most of the time. There was a little bit of time in Seattle, which is where my dad's family is from, but yeah, most of the time I was in Southern Oregon, which is kind of a more rural part of the state, and then I went to college in Massachusetts and then kind of bounced around a little bit. But there's always been a spot in my heart for the Pacific Northwest. So I think when I, when I ended up, you know, connecting with Boise State, it kind of felt like coming home and coming full circle a little bit,
Chris :Is that even even though you're, you're many, many miles away, right, and you probably don't come like when's the last time you were on campus?
Leslie:Oh man, it was when I started. Because of the pandemic, I had just come for faculty orientation and in the end it must've been summer of 2019. And then, of course, the pandemic hit and then I really adjusted to working here and not not traveling Like I thought I was going to be traveling and it's, it's worked out. But yeah, I do. It's funny, like I. I know I live in Canada, I work in Toronto, but I still feel like I work in Idaho for working in the program.
Chris :Interesting Most of your students and your colleagues. Are they based in Idaho, then, or do you? Do you have quite a spread of people that you work with?
Leslie:Yeah, so we have a couple of folks actually three other people in leadership in my program are in and around the Boise area and one of them our coordinator actually was there, and then she moved to my hometown in Oregon, so it's.
Leslie:I was able to give her some advice, Like if this donut shop is still there, you have to get donuts, and you know, even though it's was, you know, 20 years out of date. So it is kind of funny. But most of my students actually are not in Idaho. We are actually the first fully online Masters of Genetic Counseling program in the United States, and so we have students a couple in Idaho, but the rest are actually all over the US.
Chris :So coming back to this, the first program in the country this master's in genetic counseling is, can I say also first in the world. Have there been programs elsewhere? Is that too big to say?
Leslie:I think it might be too big. I think there might be a program in the UK, but we're the first with the full American accreditation. So if you are a general counselor and you want to work in the US, or potentially Canada, you have to be recognized by our accrediting body and we were the first in the US that was fully online and this you know, being first out of the gate, being an earlier adopter of things, this is while you do this in your professional life.
Chris :there's an interesting connection to how you got to this place in your professional life of social media, so something that I would say a lot of people trying to figure out how to get less social media in our life, but you have been like social media before those two words were even really put together, right. So what was your first social media experience and how did that get you to then where you are now?
Leslie:Yeah, so I've always seen it as a tool, which is how I got the job. But you know, way back in the day, you know my parents are nerds and even though we were in rural Oregon in the late 80s, my dad found a way to get sort of the internet, which was kind of like a proto internet at the time, everything text-based, very slow modem speeds. So I remember surfing the web in text, which was a very different experience, the original alt text actually. They had more alt text back then because they knew a lot of people were connecting on a text-based browser. And I think then as I went to college and you know things were online, I was kind of a typical older millennial I guess, which was more that like analog childhood. Like I wrote, I remember writing papers by hand and turning them in.
Leslie:But then when I got to college, you know we, we had email and you know word processing software and you could submit it, and I just was really interested in these new sites that kept coming up. So, um, there was, you know, even before the word blog, there was like online journals, like LiveJournal, which I was on, and then we had the earliest sites that I think got called social media, like Friendster, and I remember joining Friendster and you have to be pretty old to remember that, but then I I grew up in that same time.
Chris :I don't, I don't remember. I don't remember Friendster. I remember getting to college and being amazed that the internet was always on. What a land was we? We shared everything, right? This is the heyday of napster and file sharing napster yeah that was, that was, that was like a formative college experience. So so I I don't remember friendster, myspace, myspace, yeah, so myspace, I think, was MySpace.
Leslie:MySpace. Yeah, so MySpace, I think, was probably the first big one that took off and it was horrible to navigate and I remember, you know, you click on it and like these horrible, like low-quality versions of songs would play and it would be like just retina-burning images. But it was cool and I remember meeting new people and asking them if they had a MySpace and connecting with them and it felt very new and exciting. And then my college was actually Facebook started at Harvard.
Leslie:You know, mark Zuckerberg just started it as like a project at Harvard and then when he started opening it up, he opened it at first just to a select group of colleges, a lot of which were local, and I went to Wellesley, which was kind of in the area, and we got invitations and so I used it and it was mostly I would just put things like you know who wants to have lunch in this dining hall today with me and hope that's, or I'm going to go have lunch here if anyone wants to join me, and that was pretty much the usefulness. But even at the time I was like, hey, this is a great way to let my friends know where I'm going to be, because, again, we didn't have smartphones. If we had cell phone, if you had a cell phone, it was like a brick and text messaging was still not even really a thing. So, yeah, I was into the early adoption of this is a tool, I can use it somehow.
Chris :I think that's an interesting perspective, because I think social media can easily right it's. It's not a stretch to say it's a distraction. It's a distraction for most people, Right? But you kind of again this theme of you're going to use it as a tool. This has a purpose and I can, I can leverage, leverage this so, beyond just hanging out with your, your friends, this, this, this literally got you your job. Yes, yes.
Leslie:So, uh, and it was a distraction for me too, like I'm not going to pretend that I don't you know, doom, scroll and look at Instagram when I should be doing you know other things. Um, but you know, after Facebook, the, the site that I got interested in was Twitter, and I got on Twitter maybe in 2009. It had only been up for a couple of years at that point and at the time I was really thinking about, you know, what did I really want to do career-wise? So I was taking a couple of years to kind of figure out what I wanted to do. And I got on Twitter and I was researching different types of allied health care careers, because I had decided I didn't want to go to medical school, and I heard about genetic counseling. So I thought, well, I'll make an account and I'll just post about things I find in the news or new articles that I find, and I'll just put it here and I'll see if I really like this. I thought, if I engage with it every day and I still like it, then maybe this is a sign that I should go into this further. So I did that and I started building up quite a following of other people who were looking into it.
Leslie:Fast forward a couple of years. I ended up doing my applications for genetic counseling programs and was actually able to name drop one of my followers who was connected to the program, which felt very sophisticated at the time and apparently completely confused the program director, who was like what is this Twitter thing? But they let me in anyway and I just kept it up as I was working, always sharing what I was doing, connecting with other genetic counselors. I worked in research after I graduated, up here in Toronto in Canada, and I had been working in a lab and when the funding for my position ran out as happens sometimes, unfortunately I was just looking at other opportunities. And that's when a friend of mine posted about hey, I'm really excited to be recording a lecture for this new online genetic counseling master's program. So I messaged her back and I said oh, what is that? That sounds really fun. She said, oh, it's this new program at Boise state and in Idaho. Maybe you should message them, maybe you can get a guest lecture.
Leslie:And that's was my first connection,
Chris :A lot more than a guest lecture.
Leslie:I did. In fact, the program director, um, Jennifer Eichmeyer, who is still the program director. She offered me a spot on the admissions committee after we talked and said, yeah, I'm looking to put people together. We have to select our first cohort because the program was just starting out. Are you interested? And I just jumped at the chance. I had really liked everything I heard about the program, so that led to my being on admissions and then about six months later I got an email from Jen saying she wanted to talk to me and I thought, oh, maybe this is the guest lecturer, maybe she wants to take me up on her research skills now, maybe I can do something. And she let me know that they had had an opening for an assistant director position and was interested.
Chris :So, um, or did you think about it?
Leslie:Oh no, I was ready to jump at it, but I thought what's the appropriate delay? So I don't seem, you know, like a weirdo, being like yes, immediately, please. I love your program and this is where I wanted to end up in education eventually, and you've just offered me, like you know, it feels like the thing that you'd been working towards.
Leslie:Yeah, yeah, so that was how I got it. It feels like the thing that you'd been working towards. Yeah, yeah, so that was how I got it, and it's just really funny now to think that it was originally a tweet. I saw that led me down this path, so I have always seen social media as a tool. It's gotten me a lot of other research collaborations. I have found committee members for my students' capstones as well, as I think one of the interesting things too is that patients sometimes find me and they're looking to get genetic counseling services and because we're such a new field and there aren't really enough of us, you know, sometimes people see someone who has a presence on social media and will be like how do I see you or somebody else, how do I get access to services? I have something running in my family and I want to get tested or I want to find out more.
Chris :So let's talk about this kind of I would call it still an emerging field. It's not brand new, but I think it is more publicly new. There's a larger public awareness of this, there's access to this that didn't, that didn't, that didn't exist. So not only are you the assistant director, you know of a of a program that is a first of its kind. Uh, you know, and there's that right, there's not not every university has a genetic counseling program, although I would have numbers are on the rise, um, and certainly not all of them are on online. But so for those listening still wondering, like what, what is genetic counseling? How would you, how would you, describe what your, what your field of, of research and expertise is?
Leslie:Yeah. So genetic counseling I like to describe it as we are allied healthcare providers, so we're clinicians and our job is to help people understand and adapt to the impact of genetics on their health. And I think for a lot of people they may have heard of genetic counseling with Angelina Jolie, who was very public about having a mutation in a gene called BRCA1, or some people call it the BRCA gene, which greatly increased her risk for breast cancer. So that was about 10, 12 years ago now and that really raised the profile of the field I think in a good way, and helped a lot of people recognize that maybe something similar was happening in their family to get care. But we also worked with people who you know might've had the birth of a child with a genetic condition like cystic fibrosis, muscular dystrophy, and they need to understand what does this mean for their child? Are there other kids at risk? What if they have more children? What about other people in their family, family?
Leslie:And it's really spread out to all different aspects of healthcare. We have genetic counselors who talk to people about, you know, kidney disease or there are a lot of genetic counselors working in the heart disease space about, like, not just sort of the typical coronary artery disease. That's more lifestyle-based, you know, from a sedentary lifestyle and an unhealthy diet. But people with, like, a structural problem in the heart that can cause problems or an electrical disorder, the heart doesn't beat properly and can be really risky. So you know, we meet with people to sort of explain what is genetics really in a way that it's going to affect your health and what do you need to know to decide.
Leslie:Do you want genetic testing? Do you want to find out what your risk is? Some people may not want to know that something may happen to them 30 years down the line and other people want to find out everything they can, and a lot of times the genetic testing will then lead to all kinds of other healthcare everything they can and a lot of times the genetic testing will then lead to all kinds of other healthcare interventions. So it's a lot to take in and the profession which really came about in about the 1960s is when the first training program started. It was to help people take in this huge amount of information that's being thrown at them and help them make a decision. When they're really stressed. They've probably just gotten, you know, really bad news and now they have to make a decision that might affect them for the rest of their life. So that's a lot to do, and where genetic counselors come in is just to make that process easier and more understandable.
Chris :Well, yeah, in the field of genetics, by itself, right is we know so much more about genetics and we know so much of what we thought we knew and that we had wrong or that our assumptions were incorrect. That, right the you know when you know, 10, 20 years ago there wasn't a lot of genetic testing right now, now people are sending in their saliva samples right to ancestrycom to right like, and that's a different kind of genetic testing. We have a knowledge base that is rapidly expanding. Right, the information age, the data age. There's all this data, and I would imagine that not only are the people that are getting this genetic information, but also the doctors that are then trying to use that information to help give their patients the best medical advice. That's a whole other field that likely they don't have all that this time and resources to keep up with with two fields, right? So so do you kind of then sit in between that, that space, to help not only patients but the doctors that serve those patients?
Leslie:Absolutely, and that's a that's a huge role. I think that we fill you know that we fill you know genetics has just changed so much. I mean, when I'm looking for papers, I'm looking for resources. If it's more than a couple of years old, I'm looking for updates. It's changing so rapidly and that's great for patients. It's great to have more options. It's great to have more knowledge that we didn't have, you know, 10, 20, even five years ago, but it's a lot to keep up with. So, like you said, you know 10, 20, even five years ago, but it's a lot to keep up with. So, like you said, for patients it's tough. But also, people get referred to genetic counseling, most often through their family doctor or their pediatrician, and those folks have to keep up with so many different things they have to keep up with. You know all the new guidelines that come out, all the all the other new things that are happening, new treatments new, new medication schedules, everything else. To sort of expect them to keep up with everything going on in genetics it's not realistic.
Leslie:So where I trained in Toronto because I did do my I did my master's in genetic counseling at the University of Toronto. You know I was on a street. That was we call it hospital row, because it's just like one block that has like six hospitals on it. And for all my clinical rotations I just ran back and forth across the street for two years and doctors who were affiliated with them they could just walk down the hallway and ask a genetic counselor hey, what should I be testing my patient for?
Leslie:But most physicians are not in that environment and when you move, especially to a more rural area like talking about like Idaho, you have a lot of people who are out practicing in what we would call like the community setting. So they're far away from like a high level hospital care center or university. They're trying to keep track of everything that comes up and it can be really difficult. And so forming connections with primary care providers, especially in rural areas, is a big interest of mine and just making sure that they can kind of keep up and know. You know, when a patient comes in and there are certain either red flags in their medical history maybe they mentioned something that happened to their parents or an aunt or an uncle that I want them to be able to say, hey, maybe we should refer you on to genetics who can do a closer evaluation. So that's a big passion of mine.
Chris :And those connections.
Chris :I think so that the timing of a purely online program right, and some people may kind of I think a lot of people are still resistant to the idea of something purely online and and and I'll admit me, as a teacher, I don't know if I'd ever want to teach purely online because that, right, I, I that face-to-face, is so, so near and dear to what I, to what I do.
Chris :But right along comes the pandemic and changes everything in terms of we all and not just academics. Most people probably experienced something new in their life of how we communicated or how we worked or how we interfaced, and I think, as awful as so many of those aspects were, our society has skills that it just don't have the same resources if they're in a more urban setting, but still have patients that deserve the best care that they can possibly get, and those doctors are trying to give that to them. Right, you're able to reach them in ways that aren't so location-based anymore. Again, we're talking to you in Canada, right, like you can impact and not have to be physically in that space. And so, again, I'm struck by, again, the timing of this program and those skills because, right, you're teaching these students to have that variety of skills to make that impact. And again, if we're talking about, you know, local impact that impacts so many communities in Idaho that are rural.
Leslie:Yeah, and I think it's for everything that happened in the pandemic.
Leslie:It was an opportunity to show that you can do this online. Being the first, you know you're always going to have more scrutiny, you're gonna have more skepticism can you do this, and you know, for us especially, it was showing that you can teach counseling skills, because that is part of it. It's not just teaching people what genes are and what, what the mutation they have, what that means and what what changes it causes in their body, but it's also helping people make a very difficult decision, sometimes in a really bad time of their life, and it's it's all those skills about, kind of like crisis management, about trying to help people see and recognize what their own values are and how that can help them in their decision, because sometimes they have a choice and it's not a great choice either way and they have to kind of pick the one that feels less bad. So teaching that online was really a new thing in our field and what we really found with the pandemic was well for one. When the pandemic hit, we didn't have to switch our curriculum and it had already been designed to be delivered online. We use a flipped classroom, asynchronous approach where students, you know they log in every day and they interact and engage with materials first, whether it's readings, whether it's videos, whether it's a case study, and then they're going to come back later in the week and participate in discussion boards. They might upload a video of themselves explaining a concept and then we're going to engage mostly that way.
Leslie:So we were all set up that way and I heard a lot of horror stories from other people in my field and others about suddenly you have to deliver like a two hour lecture on Zoom, and that is tough. Like I I wouldn't want to do that. It's really, you know you get the eye strain like you can't. You can't really keep up with making eye contact with all these little squares on your screen. But we were already set up to go in a way that really works online. So I think we were able to show you know this is really effective.
Leslie:And then when our students went into their clinical rotations now our clinical rotations are typically not online. Students complete all their coursework on a capstone online, but they travel in person for three rotations or about two months each, and they're mostly in the West, with a number of them in Idaho, but you know we had to switch online with a bunch of hospitals being closed them in Idaho but you know we had to switch online with a bunch of hospitals being closed and it was really great to see how easily our students shifted to telemedicine. You know, when you've been in school online, if you have to reboot Zoom because there's an update, they weren't really bothered by it. If there's a lag or a freeze, that's okay. If you're messaging your clinical supervisor, who's there, you know, watching you and getting information from them in a separate screen. Like just they took to it like a duck to water.
Leslie:So I think, in a way, like we were able to show it was kind of a trial by fire. I guess that this works, which was, I think, a really great example. There's now three other online programs that have come up in the past few years the United States for Genetic Counseling and for me. I just think it's a great way to get access to students who maybe couldn't access it any other way, like maybe they live in a rural area, maybe they can't afford to move to a major city for two years, maybe they have to stay home and take care of family and they can travel for a couple of months, do their rotation but can't just up and move. So I like seeing that and I just love seeing people easily able to transition to the telehealth mode of communication Because, like you said, that's the way that we're reaching a lot of rural people. If you can save a patient like a four hour drive, I think that's better patient care Absolutely, and you know a lot of the things you talk about.
Chris :You know if you're listening and you've ever paid attention to any Boise State marketing, right, when we talk about innovation and we talk about serving rural students like this. This, to me, is a perfect example of what that looks like, because sometimes we say those things and it's sometimes hard to imagine if you're not doing it Like well, what, what?
Leslie:what does that mean?
Chris :To me, it means taking that risk right, doing something new. In a way, though, you're creating these transferable skills, which I think are really right, the thing I think most educators in general, I want their students to take away skills that they can actually use and benefit their community right, whatever that community looks like. But but you know, whether that is a small community, a large community, you know, do the skills transfer? Are they of, are they of value? And and I think that, probably as scary as creating a new program was, I think there are advantages to that. Because you've got a blank slate right. Like you can, you are not rooted in years of academic structure, right, like I teach my class in ways, some ways that have been around for centuries. Right, and like, how do you really teach in a different way when you've got a new program where no one's got expectations? Like you're like well, what would be the best way to do this for everyone? Like, so there's got to be some liberating kind of aspect to that, like we do whatever we want. But also scary.
Leslie:Oh yeah, it was both exciting. So I think that was one thing that really appealed to me when the offer came to take this role was, you know, I am kind of an early adopter, like seeing new things and trying them out and new tools, so that really appealed to me. Obviously, the connection to the Northwest was was important to me, but it was also scary, and I I've had a lot of, I think, because Boise State is so innovative and they really are open to new ideas. You know, when I came in and I I was brought on really from my research backgrounds because every genetic counseling program has to have, you know, the dactyl curriculum where you learn all of all of the important things about genetics, about counseling, about you learn all of all the important things about genetics, about counseling, about insurance and paperwork and all the other things that relate to the job. There's kind of the practical application which is in your clinical rotations, when you go to a clinic and you actually see patients and work with a supervisor. But there also has to be a research component and a lot of programs have like a formal thesis, which is like what I did, and a lot of programs have like a formal thesis, which is like what I did, but you would encounter and participate in in their clinical life.
Leslie:When they're not going into research. We're training entry-level clinicians to go in and directly serve patients, but they may still take part in research or in some kind of project. That's going to require research-type skills of being able to read scientific papers, assess the quality, judge for themselves if that's something that they want to adopt and then potentially have to say take all these new things that they just learned from the most recent research and translate them in a way that's understandable for patients. So I put together the capstone project here at Boise State and it was great to be handed that trust and that encouragement. And then I just remember the first time thinking like isn't this going to work? You know, are students going to learn? And like, how are these projects going to be? And then with our first cohort, they just produced such fantastic capstones and it is just. I just remember with amazement when they presented them and saying like, wow, I facilitated this and I enabled these kinds of projects to come out through my program and I just got more excited.
Chris :So do you have some clear cut examples of that? And I know you said kind of the application you don't have to be a genetic counselor to benefit from that expertise, right? It's not just about the research, it's not just about knowledge gaining, it's by helping, helping helping those patients. So what are, what are, what are some, what are some highlights of that, of that research activity?
Leslie:Yeah. So first, if we think about research more broadly, is you know the knowledge portion, like you do research, you do scientific studies to kind of answer a question or get more information about something Like people with this gene. I mentioned that Angelina Jolie had a mutation in BRCA1. Well, it was through research studies to find out, you know, what is the impact of having this mutation and looking at what kinds of cancers do these people get and at what age it turns out it's a lot earlier and there's some very distinct, specific cancers that are associated with it. And that was through people being like we need to know more about this gene. You know, there are other things where we might look at patients and say, okay, we have this group of patients with this particular, I don't know, maybe this heart condition. What do they need in terms of knowledge? What will help them have a higher quality of life? What will help them find it easier to make a decision about whether or not to get genetic testing, about whether or not to get like an implanted defibrillator, which is a really big, a really big surgery and can be really scary but is often life-saving for these folks. So, through research, you take a very structured approach and something that is very rigorous and adheres to standards, so that you can try and limit the amount of bias that you're bringing to it and try and get like an objective truth. So that's really important. But if you read any scientific paper, at the end it'll usually say implications or future work, and the implications is basically so how does this change the field, what we found? How is that going to make things different? Okay, and also saying so, what should we do now? And the what should we do is often well, someone should create better resources for these patients that actually address some of the concerns that they brought up when we interviewed them and talked to them. Pretty much every paper, especially in the healthcare world, will have something like this. But you know what? Very few people actually do that step.
Leslie:People really still focus on the knowledge gaining part, and it can be really exciting to get a discovery and find something new, find a new gene that is associated with some kind of healthcare, some kind of health issue, so that we can intervene and help those people who have it. But there needs to be that application step of where you go back and say, okay, this is what you suggested. Someone needs to go do it. So that was my focus of coming in let's go to that step because it takes a lot of the same skills and, again, it's much more like what you would actually do as a working genetic counselor. And if I can go back to you know, talking about rural practitioners, there's a lot of studies that say you know what are the information needs of family doctors practicing in a rural area? What do they want to know more about? And genetics comes up and you can assess their knowledge and say, oh, there's some gaps here. Well, let's fill those gaps. So a big focus, I think, for me is to say, all right, let's take some of this new literature, let's take some of this knowledge and actually create the education. Well, there's a lot of different ways. You can deliver that, you can build a course, you can make a video. We've actually had a really great series of capstones that have you designing infographics, because they're quick and easy to look at, they're eye-catching. Demographics, because they're quick and easy to look at, they're eye-catching, they're easy to share and they kind of give you all the highlights.
Leslie:And one of our current second-year students who's going to be graduating, her capstone has been about one of these new genes that actually there's been research into about the increased risk of cancer, and it's this gene called BAP1, b-a-p-1.
Leslie:And this is again going back to, like, the newness of the information.
Leslie:Like, most genetic counselors don't even really know much about this gene yet Our student happened to have worked in research before and her team was working on this. So when she came to my program she said I really want to do my capstone on BAP1. I said, well, okay, this, this sounds really interesting. It looks like there's an increased risk for certain types of cancers and but not a lot of people know about it and definitely not, you know, community healthcare practitioners. So she worked with a graphic designer, she worked with a genetic counselor who is an expert in BAP1 and she worked with a local family doctor from outside Boise to create an infographic that's kind of like a quick cheat sheet. If you see these signs, if you see this certain type of cancer, if you see a couple of these other red flags that could be this newly identified cancer syndrome, other red flags that could be this newly identified cancer syndrome. So refer on to genetics and this kind of intervention is, you know, I think, just really fits with sort of my vision of filling in those gaps.
Chris :Those interventions have real impacts for people. Right Like on an right. We talk about the community and health but, like these, these are people whose lives can can be improved by by by this knowledge. Right that it's there, but if they don't ever hear about it, or their doctor never hears about it, they they can't take advantage of of these new, these new things they can't take advantage of of these new, these new things.
Leslie:Yeah, so the the idea with a cancer syndrome like BAP1 is that oh will these people develop certain types of cancers, and at a much younger age.
Leslie:So they should get more screening and it should start younger. And that's the important part is getting those people that kind of surveillance to watch and prepare so that if something does come up, they can get early treatment, which leads to better survival rates. People in their family can be aware that they might be at increased risk because it's running in the family. And again, and I think part of the approach too is, I can say a lot as a genetic counselor about what I think the important parts are, but I also need the perspective of someone who's working in that region as a family doctor. So that's why we brought on a local family doctor to help advise what works for you in this, what catches your eye, what's notable, what's a useful way for you to learn or to think about referring your patients on, so that we can really get that all of the necessary perspectives in, with the end goal of hopefully just catching more people who are at risk and getting them routed to a genetic counselor to the right kind of care that they need.
Chris :So in many ways it's kind of another layer of preventative care. Right
Leslie:Absolutely
Chris :Annual checkup the right go to your dentist, get your teeth cleaned regularly before there's a problem. That by heading it off at the pass we prevent a lot more complications down the road.
Leslie:Yeah, and we're trying to make this.
Leslie:We're trying to incorporate the realities of being a very busy doctor with a very busy practice, so we don't want them to have to become experts in genetics, which is where we're trying to distill it down to like what are a few red flags and there are some very distinct types of cancer that are seen with this, like a certain cancer in the back of the eye, and just saying, hey, if you see that that might be this new syndrome, why don't you refer over to genetics and they can take a closer look.
Leslie:And that way it doesn't make the, you know, the rural practitioner, the very busy family doctor, feel like they have to go and figure out how are they going to do all this testing and how are they going to, you know, manage this patient. It's just making those connections, um, and so we have this terrific infographic now that can be shared and, you know, eventually down the line, we'd like to do some studies looking at the impact of it. Um, you know, seeing, does it result in increased referrals? Do people find it useful, that kind of thing? But I didn't want to, you know, push students down the path of another knowledge gaining when there's already so many of these identified gaps in the knowledge that they could fill.
Chris :It's kind of taking what's already there in this giant pool of knowledge and making sure that people who could benefit from that knowledge know about it. Right, exactly In that gap, closing that loop so that healthcare providers can know it, so that their patients can benefit from the knowledge that's already there, right? The thing that keeps coming to my brain is, when you learn a new word, suddenly you see that word, right, it's always been there, but you, you haven't recognized it, correct, you didn't know it existed. And now suddenly it's it's. I think there's a name for that effect.
Chris :I knew there was a word that that that word was not in my brain, but but yeah, it's a strange thing, right. So kind of that same idea of of you only know what you know and so you're you're helping to close that gap. Any any other other highlights things that that people might someday be sitting in an office and they look at something like a genetic counselor did this.
Leslie:Another kind of group of projects that I'm excited about are writing children's books, and we have two students this year working on books for kids with a genetic condition.
Leslie:So there's this concept called bibliotherapy, which is just kind of a fancy way of saying you know, books can help kids learn about difficult things.
Leslie:So it's like you have books for children about, you know, if they're scared about their first day of school or getting a new puppy, or if maybe there's a death in the family. Like, a lot of parents will use a book to kind of help their child work through it, because they can look at a book and it's a little less scary because there's a character happening. It's not immediately about them, but as they go through it they can start to identify with the character and then maybe think well, if this kid in the book is going through it and they are in a tough situation and they were able to figure out a way to deal with it, you know, sort of unconsciously, kids start to think well, maybe I can too, through that identification. So now imagine that you're a child and you have this incredibly rare disease and maybe it makes you look different from other kids, maybe it means you have to go to the hospital a lot and you're sick all the time and you can't do all the other things.
Leslie:Well there's not really a lot of books out there for kids like that and you think about something that they're dealing with all the time. Having a book about it would be really, actually probably really helpful. There have been some books made for kids with genetic conditions. They tend to be really well received, and when I've had students come to me about this, I just thought, yeah, this is a great use for your capstone project. You know they have to learn all about. You know childhood development, child's learning, and we've got great resources at Boise State. You know social workers and educators, and now we've started partnering up with illustration students.
Leslie:So we've got one of our students now has written a book about a genetic syndrome called Koolen-De Vries , and it's incredibly rare.
Leslie:But it's one of those conditions where the kids have very distinctive facial features. They have intellectual disability, which is what used to be called mental retardation. They may have seizures, they have all these other kinds of health issues, and so this book is really meant to be a way to kind of help them see themselves, and it's also for their siblings, because that can be really hard too is to be a typically developing kid, but you've got a really sick sibling who tends to. You know you're scared for them, but they also get all the attention, and you know it can be hard when your parents are always worried about your brother or sister. So this book has actually two characters, and it's being illustrated by one of the senior illustration students who's using it for her capstone now. So it's this fantastic collaboration. Both our student, the illustration student, can benefit, and it's going to result in Koolen-De Vries Syndrome that the Syndrome Foundation is incredibly excited about, that they will be able to provide any new family who has this diagnosis and their child will be able to access this book.
Chris :That's awesome. I can't again. Sometimes when we talk about research and scholarly work, we think too big. I think right, it changed the world like and really being able to change one family like that, right, I would imagine for you and your students that that's what motivates you to do that work, right? It doesn't matter that it's rare or not To that kid, that's everyday life. It's not rare to them and I can imagine that level of support as a parent I mean as a parent like that, worrying about that or learning about you know how to support your child I'd imagine those books are just as much for the parents and, like you said, the siblings, as they are for the kid or for even their classmates or the right.
Chris :It's like the entire family Again, especially with these rare states that are still new to us and we don't know and that not knowing can be really, really scary for everybody involved. So those books are amazing. It doesn't just benefit your students, right, it's opportunities for other students, right, because some people are like well, what are you going to do with graphic design, right? You're just going to do? Right, you're going to make money doing commercials or you're going to, you know, ads for different things Like, no, like. There are these, the interface of your field and that field. Amazing for students at Boise State to be able to see that connection and go oh, I can do so much more than I've ever imagined with my skills.
Leslie:Absolutely, and making those connections and seeing the applicability of skills to all different kinds of projects and fields is something we do at a counseling and I love being able to see you know this is an illustration student who's going to have this in her portfolio. Meanwhile, all of these families you know parents, siblings, teachers, you know teachers could read it to the class for their classmate. And again, going back to easy access, I mean these are things that can be, you can. We're planning to have a physical book that will be for sale on Amazon as well as distributed by this foundation.
Leslie:But this was actually another capstone project is we had a student who said, wow, there are some great books about different genetic conditions. There's already some of this bibliotherapy happening, but they're really hard to access and get a copy of, because she was looking and trying to find how do I get a copy? And so she came up for her capstone project with an online repository of books about genetic conditions for patients and it's called Reading Frame. It's readingframeorg and she worked with the State Library of Colorado to give this a permanent home on the web. So hopefully, no future 404 is not found like. This is a permanent home in a state resource and it has easy, you know it has this function where you can click on the book and you can kind of flip through it. So it's not just like a static PDF that you have to scroll through, but it actually has the reading function in it and it's just been able to increase the reach for some existing resources.
Leslie:Like there was a, there's a genetic condition called cystinosis and it affects the whole body but especially the kidneys. People usually have to have kidney transplants and it shortens your life, unfortunately by quite a bit. And there was a man with it and he had written three comic books, basically kind of graphic novels about it, about his experience, and he unfortunately passed away, I think year before last, but I was able to connect his family with my student to sort of as part of his legacy. His books are now in a reading frame so that people can kind of access and read them from anywhere.
Leslie:So that was an existing resource that's now more widely available, and we've got some books in Spanish now that are added. So, you know, a student came to me with this idea and she said you know, I really love libraries and I love making books accessible. Can I do this as my capstone? I just said, yeah, you know, this sounds perfect.
Chris :Is that an open resource or can any like like live in Colorado? It's, it's. It's accessible to anyone.
Leslie:Anyone on the internet can go to readingframeorg and they can access the books that are there. If you've, if you've written a book about a genetic condition or some of these other you know a patient-written book, you can contact our student network graduate about adding it to the library. And so I've just been spreading the word far and wide because it's so convenient and so accessible and you don't have to sign up, you don't have to log in, you don't have to create an account or anything like that. It's just there and it will hopefully always be there. The state library of Colorado, who are really enthusiastic about partnering with us.
Chris :Amazing, yeah. So let's say, someone's listening right now and they're like, well, I've never had any genetic testing done, or it's still still new to them, like I, I think of my own life experience and about the only time I think genetic testing came up was when my partner and I were pregnant with our son, right, and I remember we were given this intimidating list of well, here are the things that we recommend you check for. Is there some base level now of genetic testing that people should consider? Right? Is there now a baseline of everybody really just needs to have this checked out at some point, especially if there's a family history? Is there a routine now that's trying to emerge from this field?
Leslie:I think for most people you can look in your family history. Certainly there are. There are big red flags which would be multiple cases of cancer, especially at a young age. We would say, yeah, that's a, that's something where you want to ask your doctor about a referral to genetic counseling because there probably is more testing that you can be offered to kind of get a better idea of what your own personal risk might be. But we're moving into all these other fields.
Leslie:Um, you know history of of going back to the cardiac, the heart, heart health center. You know people who had, uh, you know a history of of fainting during sports. We actually have a student right now her capstone is working with the athletic training program about educating, um, the masters of athletic training students when they're doing their assessment of athletes, there are certain red flags that they ask about and teaching them. Hey, if this particular red flag comes up and they say yes to it, this person you might want to mention about the existence of genetic counseling to help them get a little bit more information. So it really kind of touches across everything.
Chris :And so should people. Again, is that normal route, then, through their primary healthcare provider? Some people may not have access or have a trusted primary healthcare provider. Is it all referral based, or are there places where someone can go hey, I just want to order up a battery. Uh right, Like, give me, give me the the the like, hit all the fit right, like, does that again if, if we can send off our DNA and it can tell me where my ancestors came from? Does that exist?
Leslie:It does. I give a word of caution though. First off, there's a great resource through my professional organization, which is the National Society of Genetic Counselors. We have a Find a Genetic Counselor tool, chris, maybe I can give you the link and can put it in an accessible format for people. Basically, find a genetic counselornsgcorg and you can look up your area. You can look up you know someone you know provides telehealth if you're not local and and see a genetic counselor in private practice and that's like a usually a fee for service, so you're going to pay for that. They may not private practice, and that's like a usually a fee for service, so you're going to pay for that. They may not take insurance. So that's how my private practice is set up and I've seen people from around the world for that actually. But other people may, you know, just be looking for like a local, a local clinic, or you know, their family doctor may not know about how to connect them. Again, we're still kind of an emerging field, so it may be a case where the patient can help educate their provider.
Leslie:But there's a growing number of companies some of them legitimate and some of them not, that are offering what we call direct-to-consumer genetic testing. So this would be like your 23andMe your Ancestry A lot of them are An based you know where did your ancestors come from. Connect with people who share your DNA, who you know are your relatives, and you know. There's some pitfalls of that, like you know, discovering some family secrets, maybe some family members you didn't know about, your family didn't want you to know about. So it can get kind of thorny.
Leslie:But what I see sometimes is people going with these outfits that are not really legitimate. They may be doing testing, but they're doing a really bad job. It's really shoddy and they're giving people inaccurate results. So I've helped people with kind of a second opinion and to help connect them to legitimate testing. But it's tough. I mean there's ads like social media, facebook ads for get your whole genome sequence for $399. And I can tell you for paying $399, it's not going to be a good quality genome sequencing. So, um, it can. It can really cause a lot of unnecessary anxiety. In the worst case scenario it could potentially lead someone to I don't know have a preventative surgery to reduce cancer risk and it turns out that their risk wasn't actually increased, and that is an ongoing challenge, I think in our field is to kind of help people recognize what's a safe way of going about this.
Chris :And there's a lot of companies out. An important, important aspect of your field right that you touched on earlier you know you're not just. Your job is not to test for these things. Your tech year is to take those results and interpret and give options, not tell people what to do.
Leslie:No, and I would never tell people to to get a genetic test, Like I want to help them make the decision that's right for them. My job is to help them work through do I want this or not? If I don't test, what could happen? If I do test, what could my results mean? What are my own values? How am I going to use this information? So that's, I think, kind of the crux of what we do when I think about all that we've talked about.
Chris :Right, you are in the forefront of a still emerging field that is smack dab in the middle of a constantly evolving field of genetics. Right, like so, you have both of these things evolving almost in parallel with each other, Right, and? And so I imagine you know, certainly not a boring field, right, you're, you're, you're never going to plateau, right, because you're, there's always going to be, always going to be something new. So so, before we, before we wrap up, where do you see this going by the time that my child is my age, is this going to be just a standard part of the package of our healthcare?
Leslie:like to be routine, to be just something that you know your family doctor or the provider just offers to anyone. And we do have a couple of genetic counselors now who are working in primary care practices and it's amazing what they pick up and are able to get people connected with, and oftentimes it's these life-saving things, giving people earlier screening and surveillance. And that's what we want. We want to make an impact so people live longer, healthier lives Really the goal of all healthcare.
Leslie:I don't know whether there'll be enough of us that by the time your son is your age, it will be like that. I think you will see more and more genetics integrated into care, whether it's grant counselors or whether it's other providers taking it on. And if it is going to be other providers taking it on, that's where I see the importance of what I was talking about earlier is educating those providers and letting them know about the resources that exist, like a referral to gen counseling, so that they don't have to catch up on all of the genetic knowledge, everything that's come out, even the last couple of years, to be up on all of the genetic knowledge, everything that's come out even the last couple of years, to be up to date, so that continually drives the work that I do and the research that we're doing, because I can see that happening already. There are more physicians that are ordering genetic testing, so let's make sure they're connected and educated.
Leslie:As long as there's not enough genetic counselors, I think we have to recognize that it's just it's becoming more and more a routine part of healthcare.
Chris :Well, I really appreciate your time. I feel like I have learned so much and now, as the scientist I'm like what sort of genetic testing should I look into? And I feel like the next visit to my doctor is gonna be filled with questions. We'll see how much they know. But appreciate your time, your insight. I think the work that that you are enabling your students to do is amazing, and probably some of us, even in just in the Treasure Valley and in the state, have benefited from that without, even without even knowing it. So so I appreciate you sharing that work with us.
Leslie:Well, thanks, Chris. It's really a pleasure to talk to you and to get to share a bit about what I've been doing. I'm really hoping to continue to grow this program. I'm hoping to have a bigger reach and a wider scope for these projects. I want to partner with more patient groups. I want to write more books. I want to create more resources and fill those gaps that we know exist, and I think we can. You know, we can make a real difference that way.
Chris :Well, I think it's amazing work and again, thank you so much, Leslie, for chatting with us, and I I can't wait to see what you and your students do in the future.
Leslie:Thank you All right. Thanks so much, you and your students do in the future.
Chris :Thank you All right. Thanks so much. If you'd like to learn more about any of the topics discussed on today's show, please visit boisestateedu slash research. I want to give a special thanks to Albertson's Library on the campus of Boise State for the recording space. The theme music for this show was composed and engineered by Boise State graduates Alan Skirvin and Taylor Ross. Thanks again for listening.