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Demystifying Genetics
This is a podcast series called Demystifying Genetics where I, Dr Matt Burgess, Genetic Counsellor interview other genetic counsellors, people working in genetics or people affected by genetic conditions. We chat about human clinical genetics, genetic counselling, ethics, pyschosocial issues and more. To contact me, please reach out at matt at insightgenomica dot au
Sponsored by TrakGene
www.trakgene.com
Demystifying Genetics
Demystifying Genetics with Laura Yeates
Dr. Laura Yeates shares her journey as a cardiac genetic counsellor specialising in inherited heart diseases and supporting families affected by sudden cardiac death. We explore her recent PhD research on developing support interventions for these families and discuss the importance of wellbeing for genetic counselling professionals.
• Cardiac genetic counselling focuses on inherited cardiomyopathies and arrhythmias
• Dr. Yeates completed her PhD during COVID, developing support interventions for families affected by sudden cardiac death
• Genetic counsellors need a personalised "self-care toolkit" that evolves throughout their career
• The importance of multidisciplinary team meetings where genetic counsellors provide valuable expertise
• "Mainstreaming" works best when genetic counsellors are embedded within specialty departments
• Being called "stat" to map a complex family tree validated the unique skills genetic counsellors bring to healthcare teams
• Certification is challenging but valuable, making genetic counsellors more reflective practitioners
• The profession requires continuous learning as "the technology we'll be using in 10 years hasn't been invented yet"
Demystifying Genetics is sponsored by TrakGene
https://www.trakgene.com/
My name is Matt Burgess and I am a genetic counsellor. I am also the host of this podcast, demystifying Genetics. After finding my first genetic counselling job and being in the role for a few years, I began the process of board certification. I became certified by the Human Genetic Society of Australasia in genetic counselling 15 years ago now. Today's guest is Dr Laura Yates. Laura is a cardiac genetic counsellor based in Sydney who has recently finished a PhD in genetic counselling. Join us for a great conversation about certification of genetic counsellors and lots of other interesting topics. And a big thank you to our main sponsor, trackgene topics, and a big thank you to our main sponsor, trackgene. Okay, hello, laura, and welcome to Demystifying Genetics.
Laura Yeates:Hi, Matt, thanks for having me. How are you? Yeah?
Matt Burgess:good, excellent. Now, obviously I know you quite well. However, what I thought I could ask to start with is you know, when you're like at a barbecue or a social function and you meet like a friend of a friend and they say oh Laura what do you do Like? What's your sort of 90 second sort of grab about what you do?
Laura Yeates:Oh yeah, well, I love this question. But I love I always say, well, I'm a genetic counsellor, and then they pause and kind of look at you If they haven't heard of you, which most people haven't, they're like a what, a what? Counsellor, and then I would say I help families affected by inherited disease and in my case I've specialised in inherited heart disease or cardiac conditions.
Matt Burgess:Excellent yes, I remember. Oh, I think I was like sick, like off sick from school, so like maybe it was when I was in like grade nine or ten or something and Oprah was on and I remember her talking about long QT syndrome and I thought it was fascinating. And now I'm a genetic counsellor, so I don't know if there's any sort of link there, but You're here because of Oprah.
Matt Burgess:Oh, so I have so many interesting things to talk to you about, but maybe first things first. Congratulations. You have recently finished a PhD in genetic counselling. How was the process and how are you going now that you have finished?
Laura Yeates:Oh, I mean it was a great process. It was kind of wild is a good word for it. I started my PhD in January of 2020. So things quickly changed with a global pandemic. So I've heard some people say that doing a PhD during COVID would be way easier, but I don't actually think it was.
Laura Yeates:Like others, I was trying to share a kitchen table to do my workday and taking conference calls in the backyard while we were under lockdown and a couple of my studies fell over because we couldn't recruit. While clinics weren't running, my primary supervisor moved to institutes, which was a really great thing, but just added complications with getting ethics approval and extra paperwork. So there was a lot of stressful times in that, but also just really joyous times. Um, I really loved having time to think and and deep dive, um into like some of the literature and just um, I did a lot of uh, I did a bit of co-supervising and master of genetic counseling students during that time. So was a student myself, but then trying to also learn what's the best way to get the best out of your students in their projects. Yeah, I just had a great team behind me and and yeah, I got to do some great projects, both with families affected by sudden cardiac death which is always always a privilege just for to hear their stories and learn from them and got to do some great work in well. I think it's great, really fascinating work in genetic counsellor wellbeing. So that's also a passion of mine. Thinking about how do we make sure that we look after ourselves so that we have a long and fruitful career is something I'm really passionate about.
Laura Yeates:So, yeah, it was crazy. There were many times I didn't think I'd make it and I didn't think I'd hand in, but I did and I've passed and it's all just waiting to have my graduation ceremony. But yeah, I just had some. I had the opportunity throughout that it just opened a lot of doors of different ways that I could learn from different people, not only my supervisors but, um, just you know, collaborators and other researchers and, um, uh, my research participants as well. Yeah, it's good. Congratulations, that's a.
Matt Burgess:It's a great achievement. So tell me more about cardiac genetics. I know sort sort of you know that's a very broad and open question, but I guess it's sort of similar to cancer when we think of genetics. A lot of cardiac conditions do not have a strong inherited component, but then there are quite specific genetic diseases or conditions where there is a strong genetic link. So maybe if you could give the listeners a little bit of an overview of the different types of conditions that you see, yeah, sure.
Laura Yeates:So I guess, to take a step back, like going back, I trained in 2006,. Right, I did the grad dip in Melbourne and then jobs were really hard to come by. But there was this job going in the genetic heart disease clinic at RPA, which I then got and moved myself to Sydney and I guess it was there that, like I should say, we did no cardiac genetics in my training. This is how new this field was.
Matt Burgess:That was funny. I I was just about to say how many lectures did you do, because I also did a one-year genetic counselling course and I think I probably did a one two-hour cardiac genetics lesson.
Laura Yeates:Yeah, no, I mean I was lucky enough I'd started applying for jobs quite early because I was quite worried that I wouldn't get a job, as was the state of play back in the 2000s, and then I landed the job up in Sydney and then my final placement was with Ivan Machoka in Melbourne who was a cardiac genetic counsellor, and so I think through my four week placement we had maybe one cardiac clinic, and so I was likeonne, you need to teach me everything you know. He was very gracious and so, yeah, I learned as much as I could from him in a very small amount of time and then moved up to Sydney. So the conditions that we focused on at RPA were the inherited cardiomyopathy, so the inherited muscle problems, heart muscle problems, so thickening of the heart or when the heart gets big and baggy. We also focus on the inherited arrhythmias, so in those the heart is a normal size but there's rhythm problems of the heart like long QT syndrome.
Laura Yeates:There are lots of other heart, familial heart conditions, like what we call aortopathies or conditions of the aorta but there was a separate clinic at RPA for those, so I didn't see those and also the same with familial high cholesterol, which can cause early coronary artery disease. So, again, a separate specialist clinic for those, and so, yeah, my focus was very much on the inherited cardiomyopathies, the inherited arrhythmias, the inherited cardiomyopathies, the inherited arrhythmias. And then we also had a specialist focus on caring for families who have had a young person pass away suddenly, and often it's the first presentation of disease, so the family have no idea that there's this heart condition in their family and then someone just drops dead, and so it's a pretty horrible time just drops dead and so it's a pretty horrible time.
Matt Burgess:I think obviously there are many different areas of clinical genetics, but when we think about cardiac genetics, you know it's quite common that we see families where there is sudden cardiac death. And just to think about how devastating that must be to not even know that there's a genetic condition and then a loved one passes away so suddenly and unexpectedly, you know, sometimes at a really young age and then to realise that maybe other people in the family are also at risk of this, like it's just incredibly difficult.
Laura Yeates:Yeah, 100%, 100%.
Matt Burgess:So in your PhD, 100%, 100%. So in your PhD, how did the cardiac genetics come into it? Because I think you were sort of involved with looking at the families and how the families sort of come into it. Is that right?
Laura Yeates:Yeah, I mean we had, so I'd worked. I worked in the prior to my PhD. I'd worked full time in the cardiac genetic clinic for I think it was about 12 years, and at that point I was, I guess, looking for a new challenge. You'll find about me I don't sit still very well. I, yeah, I needed to stretch myself a bit more. I was also a bit tired, needed a change of pace, and so was thinking about what was next. Like, did I want to move into a different?
Laura Yeates:area of genetics, I had always thought about doing a PhD. And then the Heart Foundation had some. They had opened up their scholarships from just offering PhD scholarships to cardiologists. They'd opened them up to allied health as well, and so I thought, well, this is going to going to be my best chance. You know, doing your PhD later in life and going back to a student budget is quite hard, but these are quite generous scholarships and so this was kind of going to be my best chance. And also, I had just, I think, seen these families and we we, you know over.
Laura Yeates:So the clinic I work in, or worked in, had a really strong clinical and research focus. So, working with other genetic counselors, like Jodie Ingalls, we had really described and seen a lot of, I guess, ask questions of our patients about what it's like to lose someone suddenly. And actually, you know, a paper that I did in 2013 as part of my certification talked about the psychosocial impact on families and just how they didn't cope very well, and mothers particularly didn't cope, and so we had sort of measured this. We did a needs analysis and the families were telling us we need more support and we need more information, and so I was like, well, I can keep saying how there's a problem and the system's broken, or I can do a PhD and try and find some a solution, and so that's what I did.
Laura Yeates:So my PhD focused on I co-designed with focus groups a support intervention for families affected by sudden cardiac death, and so from those focus groups, they told us they wanted an avenue for peer support and they wanted more information. And then some of our other work. They had also talked about just wanting someone, almost like a caseworker or something to take them through the process after sudden cardiac death. And so you know I can come back to that a bit later about what we're doing post-PhD, but that's a real focus.
Laura Yeates:But for my PhD, we then, after the focus groups, went about developing a website and some online support sessions based on the feedback from those focus groups. And then I measure. So I wrote all the content for both parts of the intervention and then assessed the acceptability. So, like before I did my PhD, I'm like, oh, something's acceptable or it's not acceptable, but it turns out it's more complicated than that. So, yeah, I used a theoretical framework of acceptability just to to look at seven different um areas or constructs of acceptability and, uh, to make sure that the intervention we developed was acceptable to families, which was excellent, and I guess you know when we think about um research.
Matt Burgess:Um sorry, my dog has just come home I'm gonna close the door there. When we think of research. Uh, you know you can gather data in like a quantitative way and sort of like, um, ask people questions and get them to sort of jot down answers and and you know numbers and sort of short answers, but then you can also sort of talk to people and you know that's more of a qualitative sort of approach. What is sort of the approach that you took and is that sort of what you enjoy doing?
Laura Yeates:Yeah, I took a mainly qualitative approach and, yes, I I'm a massive talker, as you can tell, but I just love hearing uh people's stories and I think there's a lot to learn just from people's experience and um, you know, just asking the right or probing questions can just tell you a lot about um, about either what it's like to live in a family where someone's died or live with an inherited heart condition, um, or my, you know, my other project of my phd was about genetic health, a genetic counselor, well-being, so how, as practitioners, we maintain well-being. So, asking about that experience and hearing what works for some GCs and not for others, um, yeah, I just think there's a lot of power in storytelling um, you know, and I think of uh Indigenous Australians and their traditions of storytelling as just a really beautiful um way to pass on wisdom to the next generation and um and learn. Yeah, I've always liked a bit of qualm, yeah, but mainly because I just love talking to people and hearing from them and their story.
Matt Burgess:I think I'm exactly the same. I really like qualitative research, where you know you kind of come up with an idea and then you can sort of do a deep dive with people and ask them questions. And then what was sort of surprising for me was when I came time to sort of code and analyze and I don't know in my mind I thought, oh, that's a bit sort of analytical and I don't like that, but I actually really enjoyed it.
Laura Yeates:It's like, oh, you know, these people kind of said, oh, you know, this is sort of similar here, or you know, lots of people sort of said the same thing and that surprised me and yeah, I really quite like that sort of side of qualitative research yeah, and and how you know, around a central point there can actually be quite a vast area of you know of of opinion, and that that's okay, you know, like that's just the spectrum of opinion within whatever issue that you're talking about is also just really fascinating. Even though these people might have the exact same disease and have had a similar course of of disease in their life, similar impact, they can have very different interpretations of that on their own life and yeah you know that's to be celebrated um the variety that comes in that now personally a phd in genetic counseling.
Matt Burgess:Look at, looking at what you looked at sounds way more interesting than a phd in drosophila genetics. However, I know that that was something that you nearly did. Do you think, if you did a Drosophila Genetics PhD, that you would have gone on and been a genetic counsellor and done another PhD?
Laura Yeates:Oh, I mean, I know there are some people in our field who are like that I don't think I would have done a second PhD. I'm really glad I waited. I think so, when I did my undergrad and honours year and then I worked as a research assistant in that lab that I did my honours in in Drosophila Genetics and then quit my job and nicked off to Europe for a few months, as many people do, and it was actually. I gave myself the plane ride home. You know it's 20 hours. I had to decide what I was going to do with my life and the three things were PhD, which would have had to be in Drosophila, because that was my area genetic counseling, or trying to get into a lab-based job but doing human genetic testing. And so I got off the plane and I was like, nah, I want to do genetic counseling, I don't know. Like yeah, I think. I think for me it just the appeal. I realized once I did genetic counseling that I liked Drosophila genetics but I didn't love it.
Matt Burgess:Whereas.
Laura Yeates:I love genetics and genetic counseling, so it's a bit like. You know. There's that great quote from 10 things I had about you. I like my Prada backpack. No, I love my sketches, but I like whichever way. But you know there is a difference between like and love because I like my sketches. But I love my Prada.
Matt Burgess:That's yeah, you can cut that out beautiful, okay, and one of the other parts of your PhD which you sort of mentioned was the well-being of genetic counsellors and sort of burnout and that sort of thing. I know in our genetic counselling courses we speak a lot about self-care and self-compassion and sort of how to look after ourselves and I was thinking about it the other day because you know I sort of did my course around about the same time as you did, which now is a long time ago we're not that old Matt, come on we're not, but it's like was a while ago.
Matt Burgess:Yeah, we're not aging, but you know time is going ahead. Oh, but yeah, what? What did you find, and do you think that our training is enough to equip us with the skills that we need, or is it sort of like an ongoing process that it's, you know, genetic counseling, self-care is something that we need to be mindful of all the time.
Laura Yeates:Yeah, absolutely. So I remember we did a lecture or two on self-care. I remember people coming to talk and like great genetic counsellors, like Ellie Lynch, came to talk to my class and I still remember some of the tips that she gave me. You know, and I think when I started I was really worried about self-care. So I very much you know I would change my started. I was really worried about self-care. So I very much you know, I would change my outfit as soon as I got home and take off my genetic counselor and you know, um, try and keep things separate and make sure I um I went along to supervision all these things. But I think as we get, as I got further along, I know you get a bit lax in some of those protective behaviors and maybe things don't affect you as much as they did when you started as well. But it just takes sort of one family to hit a bit close to home that you're like, oh okay, like something's got to give.
Laura Yeates:And I think in my research that's what I sort of found that I had asked people who were specifically in the area of cardiac genetics because I was interested. You know, not that it's a competition but is particularly sudden death, can be really hard. Is that different or harder or easier than other specialties? And everyone sort of said, you know there's some great quotes in there, like everything we see is a bit crap, you know, like like to paraphrase, and so it's all hard but nothing's really harder or easier but our skillset helps those families. No matter what condition you're dealing with, it can still be really horrible. And so in that I think people in talking to in sorry, the interviews and and I should say because I was a cardiac genetic counselor, I didn't do the interviews for that study we got a genetic counselor who didn't work in cardiac because you know there aren't many of us, so I didn't want to, we didn't. We wanted them to feel like they could chat freely.
Laura Yeates:But a lot of the interviews talked about people trying different things on, like for their self-care. So going for a walk, debriefing with a colleague, informally, you know they had, like this, what we call a self-care toolkit that they could sort of dip in and out of as needed, and a theme sort of that came out throughout is that even throughout the career, how they use that toolkit changed and what was in that toolkit changed but they could re-evaluate and go oh no, that kind of doesn't work for me anymore. I need something else, you know, and so I think it was just this really beautiful picture that that self-care is something that needs to be an ongoing thing. And so you know, just because you're 20 years down the the track or whatever we are, you know not quite, but if we're 20 years practicing, we still need to look after our self-care. Does it look different to when we were a new grad? Probably absolutely, but, um, it's still really important.
Matt Burgess:I know, like probably like five or six years ago, I had been in the same job for about eight years. A big part of my role was seeing people or families for cancer, genetic counselling, and then another component was for late onset neurological conditions like Huntington disease and sort of testing for that. So, like you know, some pretty big areas. But I felt as a senior genetic counsellor that I was quite good at being able to separate from that and, you know, leave that at work and go home and and that was all fine. And then I had my little sojourn overseas and then in the past year I've been working in prenatal and it's not something or it's not an area that I've worked in in a really long time and I was actually thinking about sort of self-care and burnout and, like the other day I just had like three or four high risk results or positive results in a row in one day and I just thought, wow, I can't remember the last time I've had to do this and it's actually really hard, like it made me, like I sort of stopped and I thought about it and you, know,
Matt Burgess:like I'm an empathic genetic counselor and able to sort of do that. But I can't remember the last time when, um, yeah, like my thoughts kind of stopped me and I like took a second to really kind of think about oh, how am I feeling, like what is this feeling that's coming up? Oh, I am feeling something. You know, this is difficult, and so I think that it's really lovely that there are intelligent and empathic genetic counsellors like yourself that are doing research into this and, you know, publishing and giving advice and that sort of thing.
Laura Yeates:Yeah, oh, thanks. That's nice for you to say and like I think my team always pay me out for us. Like we joke about it, but it's actually a serious question when they've had, like you know, a harder call or whatever. I'm seeing a few patients had a day like yours. I asked them what are you going to do to look after yourself this evening? Because often you know you can go on autopilot and you're a professional.
Laura Yeates:We're good at like setting aside our stuff to focus on the patient and give clients into care, but then when you go home and your guard goes down, that's when it can really hit home.
Laura Yeates:And so we I often ask that question and now they ask it back to me and it's quite funny.
Laura Yeates:So it's a bit of a joke but it's a serious note because you know we talked about in my research the importance of supervision, and that might be group supervision, it might be one on one, group supervision it might be one-on-one, but sometimes you know you've had supervision two days ago and now today's your your three results in a row that are going badly or something, and so it's also about thinking what, what do you do to bridge until um bridge to supervision, or is it calling your supervisor and having a chat a bit earlier? You know, I think there's all these things that we want to just have in the back of our mind and normalise so that you know, particularly for the new grads, that yeah, we've been in this 20 years but stuff still affects us, because we're not robots, right Like the chatbots, are never going to take our jobs, we hope, because they can't do like they're not a person to be empathetic like this, they can't do like they're not a person to be empathetic like this Exactly.
Matt Burgess:And I know something else that is quite helpful for me that you know, as a more junior genetic counsellor I didn't quite realise was sort of the importance of attending conferences, and not so much for like the didactic side of things, but just I mean, I guess maybe it could be to do with the difference between introverts and extroverts and me and you are both extroverted people.
Matt Burgess:but I know that I do get, you know, energized and recharged when I go to conferences and it's the sort of the networking or, you know, just catching up with someone over coffee and having a chat and that kind of I feel like that sort of you know recharges my resilience levels, which then means that I can go back into work and hopefully sort of maintain those positive feelings. I don't know if that's similar for you.
Laura Yeates:Yeah, I mean, I love going to the conference and like HSA, our Australian Annual Genetics Conference, but particularly the Australasian Society of Genetic Council SIG day before that is definitely one of my favorites. Yeah, I just, I think I really like it when we do practical workshops and as scary as it is to try and practice things in front of each other, like that's how you learn right. Um, I have a bit of a saying I love to learn. Like I think life gets boring if you stop learning. So, whether that's, um, you know, doing a PhD, whether it's learning at a workshop, at a conference, whether it's joining a new committee and learning how to chair a meeting better, or you know whatever it is, or how to, how to do a strategic plan, whatever it is, yeah, life is boring if you're not learning.
Laura Yeates:in my opinion, but I'm also a massive extrovert so I just love working the room at those things. My team again say we don't see you at these conferences and I'm like, well, no, I can talk to you all the time. I want to see all my GC peeps.
Matt Burgess:I feel like I'm exactly the same. Streamline your genetics practice with TrackGene. Designed for genetics professionals, trackgene offers powerful features for data management, pedigree documentation and customised reporting. For a hands-on look, you can request a free demo anytime and if you're an academic or university student, trackgene pedigree drawing software is available to you for free. Visit trackgenecom. That's T-R-A-K-G-E-N-Ecom to learn more. That's T-R-A-K-G-E-N-Ecom to learn more. So you mentioned the ASGC. So the Australasian Society of Genetic Counselors, and you were our chair for a number of years.
Laura Yeates:How was that experience? It was fantastic. It was hard. Again, it was through COVID, so I ended up doing so.
Laura Yeates:You start off as a deputy chair, you do a two years at deputy, then you go two years chair, two years ex officio, so six year commitment. But when I was chair the person coming after me was unable to continue, which is for very good reasons, and so I did an extra year as chair than the normal rotation, so it was a seven year commitment. In the end I was pretty. By the end of that seven years I was pretty tired Not I didn't, not because I didn't love it Particularly the three years at chair. I really had a lot of fun and got to work with some great people, but it was also my PhD was heating up and so I was quite glad to hand over the ASGC exec to very capable people who had come after me, so that was good.
Laura Yeates:I think what was really exciting about when I became deputy is the chairs before me, so that was good. I think what was really exciting about when I became deputy is the chairs before me. So Vaman Chokka, alison McEwen had worked really hard to sort out genetic counsellor registration in Australia. Like that had been the focus for many years of the ASGC and also the board of censors working towards that. And so when I came in, that was kind of done.
Laura Yeates:So it was kind of like, you know, I remember joining as deputy and talking to Yvonne. I'm like, well, what's next? And he's like, yeah, what is next? We need a strategic plan. And so, you know, this is when we started. We implemented like the webinar series and we finally got the strategic plan up and running. We did. You know, the DICE working group became a thing. Like just all these really great initiatives that are now the three-minute thesis being online, like just really cool things that I think are really important to our life as a society are just yeah, I came in at the perfect time for me because I like I could take us a bit. Um, you know I could. I could take us in new direction because we had the breath space because of the people who'd been before me and the hard work they'd done.
Matt Burgess:Yeah, it's interesting to hear you say that because you know, as someone who was not on the executive committee and who reads the newsletter once a week, like it's not obvious sort of all the work that's going on behind the scenes. So obviously you know just hearing that there was a strategic plan that you put in place and you were thinking about what was needed, like it's like oh, wow okay, I didn't know about that.
Laura Yeates:You need to read your newsletter, matt. It was in there. Um, look, that came towards the end in my time as ex-officio. So, um, we definitely. Um, it was something like it took a long time to get going, um, but it I think it's just a helpful document to think about, like what's next? So it's a four-year strategic plan and so, because we are a rolling executive, you know the next person's got to come in. We still want a focused, uh, I guess vision for our society to move forward. So we want something consistent.
Laura Yeates:So we did consultancy, you know, lots of SWOT analysis with the membership to try and work out where do we need to go, what's next in in where we advocate, you know how, how do we provide like, really good, appropriate CPD, like what, what are our priorities and things? So, yeah, it's, it's worth having a look it's. Yeah, I mean that was a. That was a busy time. As I said, that came. That was sort of my project when I was ex officio, um, so, once the chair position had finished, it was a nice thing to be able to still be a part of and and and see um to completion. Um, which was really nice.
Laura Yeates:And then, I guess, the other thing that we did was the pilot of our mentor program, um, which was, also, uh, you know, something I'm really passionate about Because, again, I have met some genetic counselors in my career who are very kind and take my call when I call them, but not maybe not everyone's like that or feels like they can comfortably say, just ring someone up and go, oh yeah, I need some advice. So we wanted to sort of do a pilot program which we learned a lot from, and so now we're trying to, we're working with the HSA um to try and build a program um and get them to help us run it um. We have lost a little bit of steam with that um just because we're all volunteers and have a lot on. So it's something that's in the back of my mind to pick back up it.
Matt Burgess:It's lovely because you know there's maybe between four and five hundred genetic counsellors across Australia and New Zealand that are members of the um, the ASGC, and talking about, you know, continuing professional development and registration, like I think these are things that make our society stronger and you know most, if not all, genetic counselors are in the role to help people and um, but it's just lovely and reassuring to know that we are trying as a profession to have some sort of guidelines or registration or, you know, sort of rules that we abide by to make our society stronger.
Laura Yeates:Is that?
Matt Burgess:sort of what like the ethos that people were thinking about when they were trying to put all of this together, trying to put all of this together, I guess.
Laura Yeates:So I mean registration has a few, I guess, goals in that it keeps it. Primarily it protects the public from harm. If they're off to see a genetic counsellor they can look them up on the register and make sure that they have the appropriate training to be providing that service, and that's really important. But I think it also just gives us credibility. We're trying to apply for Medicare numbers so that our time can be offered, can be Medicare-rebatable. So at the moment, for instance, the cardiomyopathy genetic test is, if you meet criteria, is available under Medicare, so no cost to the patient and genetic counselling is recommended as part of that process. It says by an appropriately trained person.
Laura Yeates:But who better to give genetic counselling than a genetic counsellor Like? This is our bread and butter. Yet doctors, like clinical geneticists, who do very good work don't get me wrong they can build their time, but we can't build ours and you know we all work for services that have long wait lists that are overstretched. If this, by allowing us to bill for our time, would open up more money so we could hire more genetic counsellors and ultimately people don't have to wait as long and have better access to genetic testing. I'm all for that on and have better access to genetic testing.
Matt Burgess:I'm all for that, said like a true public health advocate. I agree, yes, fingers crossed, it's not an easy process, but let's keep chipping away at it. But something else that you're passionate about is mainstreaming, and I know with some of my other guests we've sort of spoken about this concept of mainstreaming. With some of my other guests we've sort of spoken about this concept of mainstreaming, but I guess, in summary, mainstreaming is the idea of genetic testing. Instead of just being something that is made available by genetics healthcare professionals, so the genetic counsellors and the genetics, it's sort of enabling or helping other healthcare professionals access genetic testing. What has been your experience of mainstreaming?
Laura Yeates:Yeah well, so I guess I've mainly worked in a mainstreaming kind like a hybrid mainstreaming, I don't know what you call it. Instead of working as a genetic counselor for a genetics department who was then going to the cardiac clinic, I was employed through cardiology. So I've I've kind of been in this space for a while and so you know I'm all for mainstreaming. Like people talk, they put a lot about, you know, education modules for doctors and nurses to be able to do, pre-consent for genetic testing and conversations about results. Like that is all great and good and will help again, help patients who can't currently access genetic testing in a timely manner to access it.
Laura Yeates:But to me the simple solution is put a genetic counsellor in each of those departments, like I did. Because actually what ends up happening is that I work with the cardiologists, I attend the MDTs and give the genetic counselling input, I do journal club on genetic conditions, I upskill them just from being a participant, an active member of staff and participant in their department, and then for the easy stuff that they can do, they can do it. But then I'm there for the hard stuff, when they're like I don't know what to do here, laura, and you're like, okay, like this is where I come in, you know. So I think, um, whilst I am a supporter of mainstreaming actually my ideal mainstreaming is put a genetic counselor in every you know respiratory, nephrology, ophthalmology, cardiology, all of the specialties, neurology they're already there. But, um, what would happen if we flood each department with a genetic counselor? I think you'd see a big increase in understanding of genetics and patients would get better care and there'd be more jobs for genetic counsellors, because we do great work.
Matt Burgess:That's my rant. One of the most controversial things I think we've ever heard on this podcast. Have genetic counsellors doing mainstreaming? No, I completely agree. I guess, like I don't know, seven or eight years ago in for me, mainstreaming or what I was sort of exposed to was in familial cancer, and you know, it went from a process where every single person that was having genetic testing for cancer had to be seen in genetics and then we soon realized that it just can't continue like that. You know, this is not a model that we can maintain. So we were trying to help our colleagues in other areas with testing and I mean, it sounded like an okay idea and I kind of thought, oh, this is not difficult. But I, I guess, sort of coming back and and seeing what's happened over the last six or seven years, it sort of surprised me that it hasn't been as successful as what I thought it would be or could be. And I think really the solution, which is basically exactly what you just said, is put a genetic counsellor in there.
Matt Burgess:Like that would have sort of helped all of the issues, I think.
Laura Yeates:Yeah, because, as someone who knows what to do, could brainstorm off to go. Laura, I'm about to see this patient. I think this is what I'm going to talk about. If there's anything else, can I grab you.
Laura Yeates:Or if they want to know about pre-implantation genetic diagnosis, you know the cardiologist can sort of talk about it as one sort of option, but it's like no, no, there are three different options for family planning. Like if you're going to bring up family planning, you need to do it properly, like all these things that, yes, we can teach, teach, but and I think, giving that basic information, if some people don't want to know all the detail and they're just like, oh, let's just do it, see what happens and then think about it once we get results, that's fine. But for those that have the extra questions, having the person at the clinic, the genetic counselor, who can handle those extra questions and he's trained to do the harder questions is like it's all about putting us at our peak of scope of practice, right? Um, I have good skills, use them, and let me use my skills to train the rest of the department in the same way. You know, I I learn a lot about how to read an ecg and echocardiogram. Just by being in the MDT meetings and asking questions, you know.
Laura Yeates:When the electrophysiologist cardiologists are going on about a Brigada pattern, I'm like what are you looking at? Like teach me, and so now I can pick a Brigada pattern. Like you know no cardiologist, but I can usually get a type one and so you know. It's that reciprocal learning, I think is really important. I upskill, they upskill, and then it's very much a team who you know. It's how we're meant to work. This is our scope of practice, that's yours. We work together for the best care that we can provide. Like that's the dream, right?
Matt Burgess:Yeah, just for the listeners that may not be au fait with what MDTs are um, it's multidisciplinary meetings and I kind of think about what was medicine like before we had these meetings, like it must have just been so siloed did, did people just write letters to each other and it would take a really long time.
Matt Burgess:But basically, you know, at these MDT meetings all of the cases for that particular indication are presented and all of the different specialties talk about a particular case. So I know for myself, I used to be involved with the breast cancer MDT. So everyone who was diagnosed with breast cancer that week we would talk about it together. There would be, you know, a radiologist, there'd be a pathologist, there'd be a surgeon, a radiation therapist, and it was a holistic way to talk about each case and sort of work out what was best for the patient. But what was lovely was what is best for the patient. But what was lovely was what is best for the patient is also to have a genetic counsellor present and involved and contributing to that. So, um, you know, I I really like to hear that you are part of a cardiac genetics MDT and talking, you know, and that your um role is really valued in that sort of setting yeah, yeah, a yeah 100%.
Laura Yeates:And I think because it saves a lot of time as well, right, because everyone, all those experts, are weighing in on the plan for you, as you the patient, and even if it's not, even if it's next steps, for you know, we need a cardiac MRI to try and work out what this diagnosis is, and we're ordering genetic testing and you know, I think also the genetic counselor being there, where the person, if the patient, has questions, they're going to try and get them on the phone, right, we're the ones you can get on the phone, you can't get the doctors. And so, having been a part of that conversation and just being able to reiterate the plan, you know, because, especially when you go for an appointment, like it's really hard, how much do you actually take in a medical appointment? Having that plan, having someone that you can call and just kind of check things in with, or like we'll send you an email and go, oh, what was I meant to do next, like and being up to date with what's next? I mean, it's kind of it's the chameleon of genetic counsellor, right, like you could argue that that's kind of going into a nurse, coordinator or social worker role. So, again.
Laura Yeates:I think as my role in the cardiac clinic I kind of had a wide, I kind of had to fill a lot of gaps because we didn't have a nurse but other clinics have nurses who can, so you work with that team, you know. I just think it's a nice. I think it just opens up a nice conversations and like if I I had a medical problem, knowing that six experts are in a room to talk about me in a like professional, like, not behind the back way, but in a what's the best treatment for this patient, I'm like, yeah, I'm all for that right, because that's sick. It's not just one doctor, it's now six experts in whatever their area is who get to weigh in on that.
Matt Burgess:That's a yeah, you're going to get a better answer now, I am someone who quite likes a medical drama, um, and in a lot of the sort of um dramas on tv they talk about doing things, stat and you know like we need, um, you know, information immediately and sort of one of the jokes in genetics is nothing is ever really that urgent.
Matt Burgess:You know, like in in emergency, if you need something straight away, like seconds can make a big difference, whereas in genetics, like really it's kind of like maybe days or, you know, weeks or whatever. But one of my um sort of favourite stories about you is when you were requested by a cardiologist because he needed a genetics consult staff. Can you tell us about that and sort of what happened and what he needed you for?
Laura Yeates:Yeah, sure.
Laura Yeates:So I mean I got a call to come to the ward, which often happened, you know, there'd be a genetic diagnosis or something and they'd want me to come up and see the patient and give them some education and help sort out appointments or organize genetic testing.
Laura Yeates:But this particular time one of my cardiologist colleagues, who I knew she'd done some research with us, told me the story that this cardiologist we had a lovely patient and her family in she was quite unwell, had come from overseas but couldn't, and so didn't, speak much English, and so they were trying to take a family history with the interpreter, but there was multiple consanguinity loops and so no one could work it out. And so when I they're like're like, oh, they need you to come, like now, like right away, like I think they're like we've booked the, we've told the interpreter to come back at like 12 o'clock, and it was like 11, 15 or something, um, we need, can you come at 12? And and so I was like, yeah, yeah, I can come, um. And so I got up there and they'd managed to do that, that this couple were married and had some children, and that was about it.
Laura Yeates:So, I started again and it actually it was a hard. It was a hard family tree. You know it took me an hour and a half with the husband, um to, and the interpreter, just to make sure you know that we had really got those relationships down and there were multiple consanguinity loops. So I drew it up and put it in the file, got those relationships down and there were multiple consanguinity loops. So I drew it up and put it in the file. But my colleague had told me later she was like I was specifically asked that the you know, the cardiologist kind of yelled to the team. Can someone please call Laura Yates to come and take this family history?
Laura Yeates:I don't know what's going on and so, like, at that point, you know I had it's probably I, I don't know, I was probably three or four years into the job and so I'd worked really hard to make sure I was at, you know, the weekly cardiology departmental meetings I had any time I was asked to consult on the ward, or like one of the doctors needed something, I would try and do it straight away, like really prioritize them, like letting them know who I was and the value that a genetic counselor could have and how I could help them.
Laura Yeates:And that was kind of when I knew I'm like, oh, if he's asking for me, he knows what one, he knows what I can help with and two, he values my input, yeah. And so then we were joking that like I was needed stat. It was very funny, it's like like, and I kind of had to drop everything no more clinic break, no, no, get up there and do it. But it was just really validating for me that like, yes, it had taken a long time to gain this recognition, cause you know, this is around like this would have been sort of 2010,. 2012 maybe. So things were really starting to take off in in genetic text, testing, wise and things. So, yeah, it was just really validating for me that they understood who I was and what I could offer well done.
Matt Burgess:I love that story, I think it's fantastic and but it sort of highlights something as well. You know, um in uh, our culture in Australia. It's not often for some of us or most of us, when we're drawing family trees to come across consanguinity and that's the idea that our clients or the people that we're drawing on the family tree may be related like first cousins or second cousins. But I know sort of what makes it harder is when there are multiple consanguineous relationships in in the one family tree. It's like, oh okay, this is complicated and yeah, and just trying to, you know, connect.
Laura Yeates:So dad is your mom's, brother's, you know, like, how, the, how the loop goes, because that's important just to understand what might be going on. Genetically, um, each family is unique and I celebrate each and every family that I talk about, like whether it's someone who has, is adopted out and has no contact, versus people who can go six generations back. Each family is unique and and beautiful in whatever family looks like for them. Um, but, um, yeah, the, the consanguinity loops. It takes a little while to get right and it's important that we get it right because we use this information to assess risk.
Matt Burgess:Yeah, and it's very interesting that you know like one of the core sort of competencies of a genetic counsellor is drawing a family tree. You know it's sort of you know, one of the the most basic or one of the first things that we learn. But it's interesting to think about how it is a skill and that we get better the more that we do it. And, um, I'm just curious, I don't think I've seen one of your hand-drawn pedigrees.
Matt Burgess:I know myself I'm not the neatest of people and what I normally do is draw a family tree by hand and you know you never know sort of where on the page to put someone because there might be more family and you have to squash people in. And then I sort of enjoy having my draft messy copy and then doing a nice neat copy that people can sort of read and interpret, and whether that's again by hand or, you know, using a program like TrackGene, who is a beautiful sponsor of this podcast. Thank you, trackgene. Yeah, what do you think about sort of those basic genetic counseling skills and sort of the importance of of? Um, you know, practice and that sort of thing?
Laura Yeates:oh yeah, I mean, um, I, I am like you. I draw a messy one and then make it presentable. Um, because you're right, you always put the person on the wrong side of the page and then they've got like 10 siblings and you put the other person with all this space who has like one sibling. You know it's crazy, um, I think for me, and something I say a lot to the students and to the new grads, is, you learn a lot in your practice. So I remember being in a consult once with this lady who we thought had arrhythmogenic right ventricular cardiomyopathy, um ARVC, and I had taken her family history over the phone before she came in. And then she's in there with the cardiologist and me and we're giving her education about the condition and she's like, oh, after we got off the phone, I do have two siblings who died. Did you need to know that? And like, oh, they died in their 30s. And I was like I'm like yes, we needed to know that. And my boss looks at me like why? Why am I paying you? Like this is what, this is your bread and butter. And then I had reflected back and I clearly just didn't ask the question in a way you know, I think I asked how many siblings does she have? But I didn't clarify where they're living or had passed away or how many total were there in your, how many children were in your generation, in your family. And so you know from that it's like okay, well, every pedigree I did. After that point I only made that mistake once, right.
Laura Yeates:You then change your practice and so I think you know you learn something in the first hundred pedigrees, the first 500, the first thousand. You can't rush that Like. I feel like particularly and all due respect to the new generation, they are lovely and they have lots to teach me. But one of the things I like to teach them is like don't try and rush. You know there's this urgency to to get up the ranks and be more senior genetic counselor. Actually, you'll never have the grace and the like, the support in those early years again to learn your craft and learn it well.
Laura Yeates:So take that time, ask the questions. Don't be afraid that people think you don't know because you're a new grad, you're not meant to know everything. Just use that time and you can't. You know, I always say you can't. Just there's no shortcut to get to a thousand pedigrees. You have to draw each and every one, and so that practice will change. And then once you get to a thousand, then we're going for ten thousand. But whatever it is, you know, just keep, that's okay, and don't. There is beauty in that and you learn a lot from that process. So don't, just, don't be too quick to rush it. I guess is my another one.
Matt Burgess:Oh, I love your rants. You sound so wise. Oh, I don't know where that came from and I guess just finally, you know thinking about students and a major theme in genetic counselling is certification, and you know we have a certification process which is different to that in the United States, which is more of like a, a one-off exam, which is different to what the genetic counsellors do in the UK. What advice do you give um, you know the the newer genetic counsellors about certification?
Laura Yeates:I say just do it Like yes, it's hard, it's hard when you're working full time to then be able to pull out your computer on the weekend and write your cases. But for me, it made me a better genetic counsellor. Reflecting, working, looking at the literature, what you know, what theories can we use. It made me a better genetic counsellor, and I think genetic counsellors um are the type but tend to be according to um Robert Rester. He wrote a blog post about how we tend to be type A's. So we, we want to do better, um, and so I think you know this is part of it, and so I you know my advice is just break it down, work. Okay, I've got a couple of hours now. What am I going to work on? I'll do my genetic section. I'll do my transcribing of my recorded case, whatever it is, um, but just, although it's hard, enjoy the process because it will make you better and we should be better, because again, it comes back to that wanting to keep learning. Because you know when I started, the things that we do we do now, like I can send for a genome testing.
Laura Yeates:Genome testing didn't exist when I went through the course. This is a profession. If you don't like learning, you're in the wrong dog, because the technology that we're going to be using in 10 years hasn't been invented yet. Right, like so, um, yeah, I just think certification is a particularly for your counseling skills is just a really important process. Um, so I, my biggest suggestion is to get a um, to get a like good power ballad and just play that on repeat. Mine was Katy Perry raw and like seriously, it got me through. Yeah, as I'm walking around, it's like, yeah, I've got this.
Laura Yeates:Like yeah, you're roaring, I'm roaring, yeah, especially when I had to go in to do the um session with the actor where the board are watching. Yeah, it's pretty intimidating. I think they changed that now, but um, yeah, that was on repeat for me oh good, I know I.
Matt Burgess:You know Robert Rester's blogs and basically everything he's written about genetic counseling is amazing. I am sort of the absolute opposite of type A personality. I'm very much type B, however, you know.
Matt Burgess:I guess we do in life, what's important to us or what gives us meaning. And I know I feel like a big nerd saying this, but I put so much um importance on my certification and it's still one of the the proudest things I've done. And I think on paper there are other things you know, like a master's degree is probably harder or better, or you know um, than certification, but still, I still remember when I got my letter saying you know, congratulations, you're now board certified, like it was. It was such an important moment. So, yeah, I really hope that the newer genetic counselors come that are coming through sort of think about that and appreciate that as well.
Laura Yeates:Yeah, and it just. It also just opens up a conversation. Like you know, we would often present a case we were going to write up in our supervision group. So then again you get more input. You know, if you've got a few genetic counselors who've been before you, would they read your case? You know just ways that you can help get and you learn again. You learn from the people who've been before you and sometimes and you can and then hopefully you learn something that you can apply to your practice. Like I just think it's actually, although it's hard, is really a valuable thing to do. Excellent, it's easy to say this side of it, it's like the PhD.
Laura Yeates:You know, if you'd asked me this time last year about a PhD, when I was madly writing and drowning, then yeah, you might've got a different answer. But this side of PhD, this side of certification, life is good.
Matt Burgess:Well, Dr Laura, thank you so much for chatting to me about all things genetics and genetic counseling. I've really enjoyed it.
Laura Yeates:My pleasure. Thanks for all you do.
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