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 Gillian Hooker
Join us for an insightful discussion that delves into the intricacies of genetic counseling through the lens of our guest, Dr. Gillian Hooker. We explore the domain's challenges, the importance of community, and the transformative power of empathy.
• Introduction of Dr. Gillian Hooker and her role in genetic counseling
• The impact of the COVID-19 pandemic on the genetic counseling profession
• Personal stories of resilience and post-traumatic growth
• The evolution of training programs in genetic counseling
• Discussion on emotional challenges within the counseling settings
• The necessity of adapting to the fast-paced world of healthcare
• Insights into the functionality of the US healthcare system
• Challenges genetic counselors face in billing and procedures
• Closing reflections on the future of genetic counseling
Demystifying Genetics is sponsored by TrakGene
https://www.trakgene.com/
Hello, my name is Matt Burgess and I am a genetic counsellor. I am an adjunct professor in genetic counselling at Bay Path University and I am the host of this podcast, demystifying Genetics. Join me today along with my guest, dr Gillian Hooker. Gillian is a genetic counsellor working in industry at Concert. She works in policy and academia and is involved in genetic counselling research. Join us for an interesting conversation about technology, workforce and policy all related to genetic counselling. Hello, gillian, and welcome to Demystifying Genetics.
Gillian Hooker:Hey, matt, it's great to be with you today.
Matt Burgess:Yeah, thank you. I know I met you back in 2019 at the NSGC in Salt Lake City and I remember at the time thinking, oh, I really want Gillian on my podcast. So it has taken me about five years to get there. So thank you for your patience.
Gillian Hooker:Only a half a decade, no big deal, and actually I think I've got something to declare to start off with.
Matt Burgess:I am feeling a little bit emotional. I have just watched a couple of episodes of ER and it's the final season and I've only got a couple of episodes to go and I think they're pulling out all of the stops. Did you watch ER back in the day?
Gillian Hooker:Oh, yeah, when he dies, dr Doreen, or where was it he dies in Hawaii. That is like one of the saddest episodes of television I have ever watched in my life. Yeah, it's so funny. I didn't watch it when it was on TV live.
Matt Burgess:Funny like I didn't watch it when it was like on TV live. But um, yeah, and I mean some of the episodes are sort of a bit, you know, benign or boring, but then, oh, all of a sudden they pull out these episodes.
Gillian Hooker:It's like wow oh yeah, I was a huge fan back in the day okay, so on that note.
Matt Burgess:moving on, so you were the NSGC president a few years ago and I guess it was a little bit of a funny time, not only for you of being president but for the whole world. What was it like being the head sort of honcho at NSGC for a year?
Gillian Hooker:I mean, I look back on that year with really nothing but gratitude. Honestly, I think that 2020 was a year for all of us that we felt so powerless about what was happening in the world and for me, it really helped me cope to have that role, both to focus on and to keep me busy, but to do things that really felt meaningful and impactful for the genetic, health and community, certainly, but also for people that we serve. So to be able to put words to what we were experiencing, to try to use those words to motivate, to move things forward and have a platform for that is just an experience for which I am immensely, immensely grateful, not to mention that the community it gave me, as I was sort of sitting at home in front of my computer in a year when I expected to be traveling and out there and meeting lots of people. I still got to meet lots of people, but without the traveling part of it.
Matt Burgess:Yeah, yeah oh, it was kind of crazy, but I recently went back and read your um presidential address and you know it's it's very personal and it's a great speech and I really sort of encourage people to download it and have a look at it.
Matt Burgess:But there were sort of a couple of quotes that stood out or a couple of things, and towards the end you were talking about slaying dragons and sort of the challenges that we have as genetic counsellors. And you, I challenge you to feel, to sit with the angst and the tension and to let it pull on your heart and on your mind. Think about that energy driving towards and take a moment to appreciate the fact that it is, with 99% probability, driving you towards something, even if you are not sure what it is. I thought, wow, that's really powerful and when I read it I kind of was thinking the way that I understand it is, are you sort of telling us not like it's easy to stay comfortable and you know like it's up to us to sort of challenge ourselves and, you know, take opportunities and to move forward?
Gillian Hooker:yeah, at the time I was particularly enamored with joseph samuel and the heroes burning um, and he, uh, was a humanist and, you know, a literary scholar who studied all the myths of the world, right, and he described the hero's journey as the sort of the common story of all the great myths, all the great movies, all the great myths going back thousands of years, that it starts with the hero living in this world, maintaining the status quo and sort of resistance to change, and then at some point something compels you to change or leads you to believe that change is mandatory, right, that the status quo is not good enough, and you embark on this journey, right, and on the journey there's a series of trials and through these trials you grow and you learn, and I believe that so fundamentally as being sort of a core part of the human experience and I think it's sort of the human superpower out there to grow from challenges, to grow from adversity.
Gillian Hooker:I've been fascinated for a long time time. The idea of post-traumatic growth um, not in any way and I think I said that in my, in my speech too not to minimize, uh, post-traumatic stress is also being a very real thing or to dismiss that, or to glorify people's trauma. There's ugly parts of that too, but I think that there is also growth in that and I personally gain a lot of inspiration from that growth. And so the slaying of the dragons is sort of the metaphor for the challenges that you face, that are out there. The adversity that we face. That, I do believe, will make us stronger over time, and what we learn from the journey makes us wiser, makes us better, and so when I'm not feeling hopeful, I take comfort in the fact that there's something coming of it that will make me stronger, that will help me learn, and try to take a moment to sort of pause and reflect on that as a way to like find hope when it's not immediately dependent.
Matt Burgess:I find that really interesting because as genetic counselors, you know a lot of us work clinically and we have that sort of um, you know the, the trauma associated with, uh, you know, breaking bad news and working with vulnerable people. You know a lot of people sort of you know it's one of the worst periods in their life, not for everybody, but I think that that sort of feeling can stay with us and you know we sort of talk about in our training not taking it home and how to to deal with that.
Gillian Hooker:But it's interesting or it's encouraging to think of it from the other side of like the related post-traumatic growth and sort of what can evolve or emerge from that yeah, and I and I would say that's a lot of the reason I became a genetic counselor was, you know, through my own experiences of loss and grief, seeing that, um, the upside if there is an upside to those experiences, was the perspective that you gained in those sort of life moments and having the feeling that, though I wouldn't choose to experience those things again just to get that perspective, or if I could go back and not experience them at all, I might make that choice too.
Gillian Hooker:But maybe genetic counseling would be a way to stay connected to some of that perspective without having to experience it.
Gillian Hooker:But maybe, working with people who were experiencing some of the greatest challenges life has to offer, maybe some of their perspectives would sort of rub off on me as a genetic counselor, and then I could carry that forward.
Gillian Hooker:And then you go home and your roof is leaking, but maybe you're able to put it in perspective and say it's not really that bad right, like in the grand scheme of life, there are more important things. And so I think it was very much that perspective that brought me into genetic counseling was really a search for existential meaning, because I was at a point where I knew a lot about genetics, but I wasn't finding it particularly meaningful. I started, I got my PhD before I became a genetic counselor and it was really in this like visionary sort of delta wave state meditative moment that the idea of being a genetic counselor came to me as a way to find meaning, and I think I've subsequently read there's actually evidence that that's true, that meaning making is one of the greatest antidotes to burnout in our profession, and I would credit the work of Marian Campion and Colleen Kalashu, who are actually studying this stuff, as evidence for that, and I'm a huge believer in it.
Matt Burgess:Excellent. One of the other quotes that you or something else or a quote from your speech that stood out to me was look at the incredible army of allies around you. Look at the allies on social media, online forums and local genetic counselling community, your classmates from school, your committees and your special interest groups and sort of. I thought that was amazing, because the genetic counselling community is quite a small community but we're quite active, like I think that there are sort of beautiful connections that we do kind of see or can sort of experience, especially online, and you sort of talk about genetic counselling being a meaningful job. Do you kind of see those two things being connected?
Gillian Hooker:Absolutely, absolutely. I think in that line I was thinking about both, like where do we train our lens? And it's easy to train our lens at the things, the statements, the positions that make us angry sometimes and sort of get us all worked up. But you can also turn your lens to the places where you find connection and you find meaning. And you find meaning and you find alums, specifically as a place to garner strength. And that has certainly been a very important part of my experience and the relationships that I've developed within our profession and probably one of the greatest delights of my life that I would, largely through the genetic counseling profession, develop so many great, deep, meaningful relationships across the country with people who never lived in the same town as me, never worked in the same place as me, but because we had this shared interest and shared missions in some ways or shared experiences, we're able to come together to try to move things forward that might make a difference and also just sort of, I guess, fellowship with one another.
Matt Burgess:Yeah, yeah, and I think I know personally that really helps with my feeling of burnout. I don't feel like I've sort of had like a level of burnout that is really high, but I think that we all kind of do feel, you know, a little bit burnt out sometimes. But then going to conferences and meeting up with other genetic counselors, I've just found it really does recharge the batteries.
Gillian Hooker:Yeah, I believe that I mean, granted, I am an extrovert, so, you know, I definitely want to acknowledge the introverts out there who may have slightly different experiences. But I think, whether you identify as an introvert or extrovert, I think that human connection feeds the soul right, and especially in times of challenge and in times of struggle, like, human connection is the silver lining, human connection is the bright light that makes us feel better, and I think it's incredibly important. And we have a profession where people opt into the profession because they like human connection, right. That to me, I think one of our greatest assets is a profession. There's really two things to me that sort of are so in common among folks who become genetic counselors. One is our desire for human connection and to serve other humans or humanity, and two is our interest in science and technology and appreciation of the fact that it's always changing and it will be changing. We all sort of bought into that and that's a little bit unique. There are a lot of people who enter a profession with a very sort of crystallized vision of what it's going to look like or what their job's going to look like.
Gillian Hooker:I think genetic counselors, in contrast, enter the profession most of the time, accepting that five to 10 years from now it could look very different than it does today. I entered the profession before just about anybody had ever had their exome or their genome sequenced. Right. Lots and lots of people over millions of people have now had exomes and genome sequenced and we kind of knew that that's where it was going, but we didn't know how we were going to do it, how we were going to deliver it, what it was going to look like, what it was going to look like. It felt very, very sort of almost science fiction-y. And now these things are a reality and I think, given that experience, like we can see on the horizon, gene therapy even right, like how much, how different that is in the last five years from where it was before. That and it's unique and it's such a wonderful consolation. Yeah, acceptance of change and embracing of technology and the desire to use that or to connect that back to human beings is a really cool thing about genetic counselors. Yeah.
Matt Burgess:Yeah, gene therapy, like some conditions that were sort of you know, fatal a couple of years ago and people have like one dose and you know, almost cured. It's amazing, but it's funny. I was listening to you just then and it's like, oh god, I feel old. Like you know, I do remember thinking when I was at genetic counseling school that some of this stuff did feel like science fiction. And I think you sort of come from a significant minority of genetic counsellors that have a PhD in science and then go into genetic counselling and then go into genetic counselling.
Matt Burgess:I was sort of the opposite and I kind of think, probably like a lot of genetic counsellors that you know finish undergrad and then go into genetic counselling. But maybe I was just young or naive, but I don't think I quite appreciated at the time the advances that would happen in science. Like I remember kind of talking about, you know, non-invasive prenatal screening, and you know they were talking about this technology and how it was coming and you know, being able to look at the baby's chromosomes or the baby's genetic makeup in mum's blood and I was like how can they do that? That's amazing, but it still took them about 10 years from that time to do it. So, yeah, I don't know, maybe you go into genetic counselling with a little bit more life experience or much more science experience. We're a little bit more prepared for that. Is that something that you talk to your genetic counselling students about?
Gillian Hooker:Yeah, so it's interesting from a couple angles. So as a phd student, I actually think perhaps my thoughts or beliefs about what we could do technologically were oversimplified and overinflated because I was so scientific about it and I think back to like 2006 when I was applying to genetic counseling. So I was like, oh, there's pgd we can get rid of genetic conditions, right, and there's gene therapy coming down the pike and we can just cure all those things and like we have so many more ways to intervene than we've had before. And then I got into my genetic health and training and had this like whoa, it's way more complicated than that sort of moment. And not only that, but like human beings are way more complicated. And the hardest thing for me about transitioning from a PhD into a genetic counseling program was this emotional, human aspect of it and that academics for me had never been so emotional and so raw and so human that I literally Friday afternoons was like in the bathroom stall just letting the tears out, like there was so much. And it was so like new to me my first semester, um in grad school, of sort of adjusting to that, and so when I talk to my students I talk about that adjustment.
Gillian Hooker:Certainly, because I see it even in our first years, even though you know who came from undergrad or came from a different sort of background.
Gillian Hooker:I think it's an intense part of our training. But it's also a really special part of our training and I think our field arose in to address the complexities of these decisions right. When you look at the start of the Sarah Lawrence program in 1959 and why they created that program, I think it was out of recognition that the sort of established practice of medicine wasn't really trained in a way to deal with the complex nuances that were coming up with amniocentesis and reproductive technologies and genetic testing. And there were folks at Sarah Lawrence who were saying we're going to need more than that. We're going to need to take a group of people and make them think about it from a lot of different angles and really train them to appreciate the nuance, to apply moral and ethical logic and reasoning to these really tricky conversations that are going to have to happen at the intersection of science and humanity. And so I think that was my experience coming into the profession as a PhD student. I think it's the experience of many folks coming into our profession.
Matt Burgess:Tracgene is transforming genetics database management with a clinician-focused electronic health record system From pedigree drawing to patient data management and reporting. Trackgene streamlines your work, letting you focus more on patient care. You can see it in action by requesting a free demonstration at trackgenecom, and for academics and university students, trackgene's pedigree drawing tool is available at no cost. Explore the possibilities at trackgenecom. That's T-R-A-K-G-E-N-E dot com. I think a lot about the genetic counselling programs especially as a, you know a professor in a master's of genetic counselling.
Matt Burgess:You know it's kind of like you know the master, you know like what is a master's degree hasn't really changed over time. You know like it's, you know, five or six semesters or it's like two years of university work. But if you think of how a genetic counselling master's has changed and evolved, you know from you know, 1969 to now, like you know the amount of stuff that we're trying to teach our students in this limited time, I kind of you know, on one hand I want to give my students all of that information and everything that I sort of felt that I, you know all of my learnings. I think, as you know, most teachers, teachers do. But then also I teach a subject called introduction to genetic counseling.
Matt Burgess:It's the first semester. I I don't want to scare my students and it's like I'm not expecting perfection. Let's just sort of talk about these skills and practice them and put them together. And you know this is a safe time to make mistakes. And once we do it once, then you know we've laid the foundation and then you can sort of add different things onto it. But is that sort of how you feel as well?
Gillian Hooker:yeah, I think so. I have also taught intro to genetic counseling in various contexts in the past and it is a really special time because you're just trying to lay out like what do you think coming in new student a genetic counselor is, and you want to keep part of that, because our students are coming in with big visions that have incredible value for our profession. Right, they are the future and you don't want to over-crystallize anyone's thinking or lead them to believe that there is like one right way to be a genetic counselor. I think that's incredibly dangerous, especially in a place that, as we've been talking about, changes so rapidly. Anyway, you need to preserve that flexibility, I think, both at the level of like an individual student give them the room to grow and ideate and define for themselves what they're going to do, while providing a framework within which they can grow and learn from others' experiences. And also, I think as a profession, there's a risk in over-institutionalizing or over-prescribing, like what we teach, and I think that's a hard thing for us even right now to think about that.
Gillian Hooker:A part of the maturation of the profession is development of standards, right Standards, documents and practice-based competencies and all of these things that define the profession and we need those in various ways to ensure quality in our training, to ensure quality for the public, that the people that we are certifying as genetic counselors are there. And this is genetic counseling, and this will always be genetic counseling as it is, because there's a lot we haven't figured out. There's a lot we still do because we've always done it that way and not necessarily because we know it's the best way to do it. Right, there are a lot of research questions remaining around the practice of genetic counseling and how we deliver it. So it's a balance. I guess you know how we do that and it's a challenge for educators, right, we have textbooks that guide us and we lean on that, but how do we both, you know, be credible educators and share what we know while leaving room for all that will be known in the future?
Matt Burgess:And I think on that point a little bit of chatter that I've heard in the genetic counselling education sort of space is the role of research in a Masters of Genetic Counselling and when you think of a coursework Masters, usually there's a research component, whether that is a mini thesis or a capstone or, and so I think I sort of you know, just have accepted that, but it's been interesting. I've heard a couple of people say, well, why like, why is there research? Like you know, can we produce good genetic counsellors that are empathic and smart and able to learn, you know, without making them do a piece of research that's just for the sake of doing research that may not even be published, or so I know that you're sort of involved in the research or like the teaching of research in genetic counseling. Um, is what I've said really controversial, or do you? What do you think about that?
Gillian Hooker:no, I think you're heading right into a really interesting aspect of genetic health thinking right now, which is that this is an area where our standards are not all that prescriptive about what programs have to do. So it's one of the areas where there is, in my reading of it, the most flexibility for programs to decide what is going to be our culture around research, what are our requirements around research, what are we going to provide? And I think it's actually really useful to have variation in the program. I want to see lots of different programs doing lots of different things and testing and iterating and figuring out what works. With regard to the research specifically, I think there are some real core questions that programs need to ask when they think about how much are we going to invest in our research training and this is sort of how I've thought about it in the context of the programs I've worked with. It's like where do we want our graduates to go and what's the current culture of our institution where we need this?
Gillian Hooker:And the fact is, 40% of all genetic counselors in the United States practice in academic medical centers today. Now, some of that, I think, has to do with the billing and reimbursement challenges we have, where academic medical centers are more readily able to subsidize genetic counselor salaries with grant money and with research dollars, and so it creates more jobs in those settings for genetic counselors. One of the big metrics for success in an academic medical center is publishing papers and getting grants right. So in training students who are going to go work in academic medical centers, it's helpful to give them that background and give them that training to succeed in that environment. I think it adds to the value they bring as a new graduate going into that program, and that to me is a really good argument for why we need programs not all programs, but we need some programs that have that level of training to prepare students for that environment. I also think for the programs themselves. If you're in an environment that really values research and publications, if that's the milieu around your program and what motivates sort of the deans and the folks around you and you're looking to get recognition for your program, then research is one way to get recognition within an institution for a genetic counseling program, and so there can be strategic reasons to build that out as well.
Gillian Hooker:But again, I don't think that applies to every program, and so I like that there isn't too much prescriptiveness around that. I like that. There isn't too much prescriptiveness around that. I am inspired by programs who've been able to build that and really succeed in that area. But I think there's also lots of ways to be an inspiring program and it is a challenge. So I think you alluded to this too. In two years we've got students in this country who are doing the equivalent of a PhD at other institutions right. Sometimes by their own making because they had questions they were so passionate about and so committed to that they just had to see them through, and sometimes because the opportunities are there to be taken.
Matt Burgess:But that's a lot to pack into two years and you know you got to consider also the sort of stress and emotional costs that that may have for some folks as well I think the other pressure that the american programs have that we don't have in other parts of the world like australasia and asia and europe, united kingdom, is the pressure to be able to take the boards and pass them. You know, to be a certified genetic counsellor in the United States, you need to sit an exam and you need to be able to pass the exam. So I think that there are sort of dueling pressures in the course.
Gillian Hooker:It's like okay, well, you know, let's teach people about research and everything that we can do, but we also need to make sure that the students can pass their board exams yeah, and and then, like we were saying before, also keep your curriculum not so static that you're continuing to keep up with changes in the profession, changes in the health care system, changes in science, it science. It's a really challenging job to be a program director in 2024. So my heart goes out to them. Yes.
Matt Burgess:You mentioned money, so let's talk about money a little bit. As an Australian who lived in the United States, I think you know one of the things that I found really difficult and really challenging and sort of surprising was how complicated and complex the healthcare system is in the United States. And I thought, as a well educated person with a you know, you know a graduate degree degree and english as a first language, I found it extremely difficult and I just thought, you know, they must, you know, I'm not surprised that there are people that are really struggling like it is so complex. Um, I think one of the ways that you know one of the things that contributes to that is sort of like health insurance in America and how that has sort of evolved. And you work at a company called Concert and what I'd like to know like. So it's a healthcare technology company and my impression is that it's there to try and streamline or make things easier.
Gillian Hooker:um, yeah, how do you do that? Oh gosh, matt, I have like five responses to everything. I'm a little overwhelmed with everything I want to say right now. So the first thing I want to say is that when I was a genetic counseling student and we had one lecture on CPT the procedure codes for billing services in the United States and ICD the diagnosis code I remember just wanting to stick my fingers in my ears and go la, la, la, la la and hide under the chair and say you know what? I'm just going to be a research genetic counselor and I am never going to do any of this stuff because this is gross and horrible and confusing and I'm just going to stay in a research bubble and get grants and that's going to be my job for the rest of my life. Ironically, I love that so much. Biggest surprise ever, um.
Gillian Hooker:To the extent that the other thing I said I never wanted to do was I never um wanted to write a book chapter. Like there is no glory in writing book chapters. Right, it's a lot of work and especially, you know, for a lot of our books. We don't have a huge population of people buying those books, so it's not like you make a ton of money writing a book chapter, but I had the opportunity a couple of years ago to write a chapter for the intro genetic counseling book on the business of health care, and I couldn't resent. I just couldn't resist the idea of, like, arming first year genetic counseling students with this knowledge of how the healthcare system actually works. And so that book is coming out, like this month, the newest edition of that, the guide to genetic counseling, and I'm really really excited to see what people think of it. We start out with a little bit of sort of comparative healthcare systems and talk about different systems around the world very briefly there wasn't time to go into more detail, I wish there was and then we focus the rest of the chapter on what's going on in the US and very carefully call out it's not because of any perception of superiority of the Us healthcare system, it's as much because of, just like you called out, the, the complexity, um, and the brokenness of the system, and and the belief that if you understand, though, the things that do work in the system and a little bit about how the system works, you're going to be in a better position and manipulate it and make it better, maybe, maybe not manipulate in a bad way I should be careful with that word but to navigate it would be a better way to say it. You're going to be in a better position to navigate the healthcare system and work to make it better, and that's been a lot of my belief and a lot of the why I have worked for a technology company for almost 11 years now. I really thought I was going to dabble in the private sector for a year or two and then go back to academia, and that was 11 years ago. And I am with the same company and so committed so committed to what we're doing to try to build a better infrastructure, and believe firmly that it's possible. So we've done it before.
Gillian Hooker:For folks who had prescriptions in the US 25 years ago which is probably maybe a minority of your listeners given the really young age of a lot of genetic counselors these days but anybody who had a prescription and remembers more than 25 years ago, it used to be on a piece of paper written, usually by a doctor. That piece of paper got lost, it got photocopied and abused. It couldn't be read. People used to make jokes about doctors handwriting. Nobody cares anymore about that because everything is electronic and doctors just say what pharmacy do you go to? And you say I go to the CVS on Main Street and 30 minutes later your prescription is ready for you and, key, key detail, they actually tell you at the pharmacy if it's covered and how much it costs.
Gillian Hooker:Wouldn't it be amazing if genetic tests happen the same way, if a provider ordering the test could tell their patient genetic counselor, doctor, whoever this is covered by your insurance and you're going to have a $20 copay, instead of going through the huge, long spiels that we go through today to try to answer that question for patients and a lot of doctors won't even do it for their patients, which I am convinced, erodes trust in the system, erodes trust in genetic testing and, if we can make it better, it's a key part of improving access and improving transparency and improving trust, and that's really what we've been committed to is creating a future where those answers are easy and clear and straightforward for everyone the payers themselves, for the laboratories. We need to get paid for the providers genetic counselors, doctors, nurses, pa to deliver genetic tests and, most importantly, for the patients to stand to benefit from those tests, and a lot of them are not getting those tests today that's complicated.
Matt Burgess:I've got it sitting here as an outsider saying good luck with that. That that's complicated. But you know, in my mind I'm sort of comparing it to the Australian system where, you know, we have universal health care and when I was in America I was like, oh god, universal health care is so much better. And so, you know, like people just get a test, and but now that I'm back and I'm back in health care in Australia, I'm sort of comparing and contrasting and it's like, okay, yes, a lot of people are seen in public health and our taxes that we pay through working go towards healthcare, and a lot of the time people are getting the genetic test. That is completely, 100% covered.
Matt Burgess:But you know, there's a finite amount of money and I think that, because we're sort of offering something to everyone, everyone is getting less than what is available. And it's like, oh, okay, I see that there is a drawback. Now, like you know, I think that there are some great tests out there that are really expensive and people just are not getting access to them. And it's like, okay, how how do we change that in our sort of system of health care? And I think part of the, the solution, is technology and you know that brings sort of great efficiencies and transparencies and you know cuts out the redundancy which all has health care cost savings.
Gillian Hooker:A hundred percent. That's exactly what I was going to say is technology. So on the actual testing side, like we need a system that incentivizes faster, better, cheaper Right, can you run this test for less money so that more people can get access to it? Can you run a better test for less money so that more people can get better testing and affordable price? And I also very much believe to your comments about public health.
Gillian Hooker:It's important for us to recognize and we talk about this a lot at concert it's all our money, like whether it comes out of your pocket, out of your paycheck or out of your taxes, it's ultimately your money. It it comes out of your pocket, out of your paycheck or out of your taxes, it's ultimately your money. It's just some of it is more visible to you than others. And we should all be really angry at the bureaucracy of the healthcare system, which probably exists in all healthcare systems, but in the United States it's about a half a trillion dollars a year spent on the administrative aspects of healthcare, on the billing and reimbursement aspect of healthcare, and these are healthcare costs that have no benefit to any of us, and this is things like fire and appeals, management and things that we spend time on in the interest of getting paid, that don't actually have health care benefits. That are just a part of this really broken system, and I think that is what we at Concert, as a technology company, want to remove a lot of inefficiency.
Gillian Hooker:So we write policies. We got into writing covered policies for tests, not so much because we wanted to be the decision makers about what gets paid and what's not, but we were reading policies written by various insurance companies and trying to digitize them, and we saw that they were being written to route everybody to manual review by a medical director at a health clinic. Right, nothing was being written to give you a clear yes or no answer, and so it was never going to be automated. And we saw the opportunity of a technology company to write policy with an eye towards automation so that people could get automated answers yes, no, answers about coverage, um, and I think that's a big piece of it. How do we, how do we keep engineering on that to make things more clear, more transparent and more efficient?
Matt Burgess:it. It kind of makes me smile because I also work for a healthcare technology company trap generap Gene.
Matt Burgess:Thank you Trap Gene for sponsoring this podcast.
Matt Burgess:But I remember when the CEO got in touch with me and sort of offered me the job, I kind of was like, but I'm not that good at IT, I'm not that good at computers, like why me?
Matt Burgess:But I didn't sort of appreciate at the time the my sort of um. My skills were that I was clinical and what I realized when I joined the company was there was a huge need for someone who is clinical, who's actually worked um in a clinic, and I think I yeah, I didn't quite appreciate how relevant or important that's, like I just took them for granted and it's like, you know, a lot of genetic counselors have these skills. I didn't really think about it, but then it's oh, that is a huge benefit and it just made me think, you know, like genetic, like we can save the world, like our skills, like our programs are really good. We, you know, get great training. And it's something that I saw in America that more and more companies that were not in genetic counselling per se were working out how good genetic counsellors were and how they could work in their businesses. And I'm still hopeful that that will happen in Australia. It hasn't quite happened yet, I don't think.
Gillian Hooker:But yeah it's like, is that sort of how you fit into the clinical part of concert and yeah, yeah, I often joke that, like the reason I got my job at concert was they were a company making software to help people order genetic tests, but nobody in the company had ever ordered a test before. So I met that criteria and it seemed like a good fit. I was like I think I could help these folks. But I also think the other thing that's in there is, like you said, you weren't that technical but at the same time you understand a lot of, I'm sure, really technical details of tests that the vast majority of this planet does not. So I would probably challenge you. You're probably more technical than you're giving yourself credit for there, even prior to working for a technology company, and the term I often use and this goes back to what I was saying about the unique skills of genetic counselors I think we're a profession that selects for what I call technical bravery, which is I may not have ever seen this technology before, but I'm not going to run away screaming right, if you have to change your video conferencing platform from Zoom to Teams, is it stressful for you?
Gillian Hooker:I would argue that most genetic counselors can manage the stress of changing platforms, adopting a new software platform, better than the average person in the population, because I think we selected into this profession because of an interest in science and technology, and I think some of that interest extends beyond genetics, right, it just happens to be that the genetic counseling profession is the profession that exists at that intersection, and that's definitely what I'm seeing with my team at Concert. We have expanded our scope well beyond germline genetics of the kinds of content we develop, the policies we write. We're now writing policies for infectious disease, which, oh, by the way, is being done increasingly on next generation sequencing platforms, right, which we are well familiar with. And so, even though folks maybe weren't trained in infectious disease, like I would argue, we're still among those best positions to tackle some of the problems around the implementation of those tests.
Gillian Hooker:We understand the technology of the tests. We understand the healthcare system to your point about how tests get ordered, how they flow through the clinic. There's a lot of these things that we learn in training astronaut counselors and our work as astronaut counselors that are applicable well beyond the field of genetics. It leads to a really interesting question around scope of practice. Right Clinically, it's important to maintain your scope of practice in a tight way for licensure and to define the profession Outside of the clinic. I think what we're seeing in the US and probably internationally, is genetic counselors working in new environments and technology companies like ours and laboratories and regulatory spaces where their scope is extending well beyond genetics, and I think that's a really interesting phenomenon that's worth thinking about, like where that goes, god I agree, and I have thought do we not call ourselves genetic counselors?
Matt Burgess:so then that means that we can do more? Or do we keep the title genetic counselor but change our scope of practice? And then, but if we do that, what sort of training do we need? And then, who certifies that? Yes, I think you raised a very interesting point.
Gillian Hooker:I think that's exactly the question, matt, and I think that's the question that our profession is facing right now, which is do we grow into those spaces where there is a need for people like us who understand the technology, understand the science and are good at communicating it with other people? Do we, as a profession, sort of grow into that direction, or do we allow other professions to grow up around us or grow into that space, or do we? Is there some hybrid where we work to develop new training programs sort of adjacent to and alongside genetic counseling? I've been working with the Institute for Genomics Workforce at Sarah Lawrence over the last few years on their external advisory committee and these are a lot of the questions they're getting into in really cool ways and I think it's so fun to think about.
Matt Burgess:Technology bravery. You know, julian, I have like about 10 other things that I wanted to cover today, but I think that's a beautiful place to leave it. It was so good seeing your shiny eyes and your beautiful smile again.
Gillian Hooker:Thank you so much for being a guest on the program and yeah, thank you oh man, I feel like I could keep talking, so maybe someday you'll have me back. This has been a really fun conversation and the time really just flew by. So thanks so much for having me. It was great.
Matt Burgess:Excellent, thank you.
