Genetic Counseling Unwrapped: A Deep Dive. Demystifying Genetics with Jaime Jessen-Brown

Hello, my name is Matt and I am a genetic counsellor and I am the host of this podcast, Demystifying Genetics.

Demystifying Genetics is all about interesting conversations about clinical genetics. In this podcast, I talked to Jamie Jessen-Brown, a genetic counsellor based in Toronto, Canada. Jamie and I studied genetic counselling together in Newcastle, Australia, before she moved back to Canada a few years later. A big thank you to our sponsor, attract Jane, and to my editor, Angelica. Hello, Jamie, and welcome to the podcast. Hello, Maddie. Thank you very much for having me.

Now, I understand this is your first podcast, so I'm going to be nice and gentle. No need to be scared. Thank you. Now, first things first, how are the dogs? The dogs are good. Steve has recovered from his second ACL surgery and touch wood, back to being his annoying self. Otto is managing to handle Steve's attitude and hasn't had a fight in a while. So all good.

Oh, good. Because I know when we were sort of trying to organize a time for the podcast, you were like, oh, it can't be around feeding time. So yeah, Steve has me trained. That's for sure. And that's my own fault. But it's our system and... You know, we couldn't walk them today because of the freezing rain.

So enrichment toys it was. Oh, lovely. Now, I must admit, I am a little bit emotional. I've just watched most of an episode of Ripple's Drag Race. And it was an episode where the queens had their parents, like either their mums or their dads. And it just was so emotional, like these parents walking in and the drag queens, like looking at their parents. with so much love and it's like, I need to like get out of it so I can get into podcast mode.

Well, there's nothing wrong with appreciating those things. That's what life's all about.

So I was kind of thinking, like, I know you took my parents, especially my mom, a long time to sort of wrap her head around genetic counseling. Yeah. Like, do you think that your parents, like, understand what you do for work and like what genetic counseling is? I think when I worked in the clinic, like when I worked in the prenatal clinic and, you know, that was a very set understood position.

So I think they understood more than, not maybe to its completeness, but they knew what my job was in terms of supporting the patients and, you know, giving a lot of bad news and sort of helping them through the journey and And, you know, that made a lot more sense to them, I think, when I started. I'd say now they probably don't really quite understand how the genetic counseling component works with the stuff I'm doing now. But they're always very proud to say it.

But I'm not ever quite sure that anyone other than other genetic counselors really know what genetic counselors do. Because I think it's expanding so quickly, too. It's not just the traditional model. I won't age us when we graduated, but it's certainly changed in the last couple of decades. Let's put it that way. Yeah.

I know my mum told people that I was a genetic counsellor and she sort of explained it, but it was probably, I don't know, over 10 years ago now, I was at home at mum and dad's house and we're having a cup of tea and mum said, oh, you know, one of my friends has recently had breast cancer. And I was like, oh, okay. And she said, yeah. And, you know, she had a surgery, but they did this genetic test that she needed to go and speak to someone.

And she had this test and found out that she actually had the breast cancer gene and that she has to have her ovaries removed. And then they're talking, you know, they need to talk to other family members. And I sort of looked at her and went, mom, you know, that's my job. Like that's literally what I do. Really? Yeah. Wow.

Yeah, I guess it's, I don't know. I think we, I limit to what I share with my, I mean, you have to leave work at work, but that's fascinating to think that that's, she's describing exactly what you do. Now, I know like you sort of said that you started in the clinic and now sort of what you do is a little bit different.

What are you doing now? You know, I'd love to say I could give you like a straight answer for that. But I think for the last 10 years, I transitioned into working in, I guess you'd call it industry. And so I still have my genetic counselor hat on. Many, many times I do. I still tend to see a few patients because I still love that work.

It reminds me kind of where my roots came from. but I guess I was told I should sort of figure out a new role for myself if I wanted to sort of transition out of the sales position I'd started in because I didn't like sales and I wasn't good at it and so medical science liaison sort of came up because I just started looking at different job postings and I found the U.S. Genetic counselors they had already kind of transitioned into these liaison roles.

I would argue every genetic counselor is a medical science liaison in their own way. I think we all have the same traits as MSL, but I guess my official title is Medical Science Liaison, and I really am focused on sort of somatic genetic testing and integrating that into not just germline focus, but precision medicine in oncology. So I've kind of whittled my way in, in maybe a non-traditional way, but.

Really, I'd say I wear many hats. I support the sales team in terms of giving them the right sort of scientific information, but I still work directly with patients and patient advocacy groups and oncologists. So it's really expanded from what I had started with and what our training was in. It's really gone far, far past that. Yeah.

So I guess, you know, obviously as genetic counsellors, we're involved with mainly or mostly inherited conditions. We think of like genetics and being passed through the family, but you mentioned somatic. So, like, I guess, you know, for the general public, when we, like, when you have cancer and the doctor takes a biopsy or you have surgery and the sample goes to the lab, the pathologists are doing testing on the actual tumor. And a lot of the time, they're doing the actual genetic testing.

Like what sort of is the that aim there or like you know is everybody who has a tumor that goes to pathology are they all getting like a somatic genetic test oh gosh I wish sadly no I think that's kind of that's kind of what's keeping my passion going is that it's it's not universal and it's not consistent. But, you know, it kind of was an aha moment for me when I started where I am. I sort of became an expert in retinoblastoma, which is a rare childhood hereditary cancer, not always hereditary.

But they had started 20 years utilizing the tumor. And when I came in and transitioned from my other specialty, it took me a while to really understand it because it's not part of our training we it's not it wasn't part of like sort of the way we thought of genetics, but as I started to learn more about these tumor tests that the physicians are doing and the goal for them is to be able to determine which genes aren't working in the tumor because if those genes are are damaged

and not making the right protein they've got like their own unique I guess like uniform. They're able to be targeted with certain medications because they're genetically unique. But when we started to explore that more, saying, you know, if there's a genetic mutation in one of the genes in every cell of your body, it's also going to be in the tumor. So while everybody has sort of jumped on to doing genetic testing of tumors, I'd say it's limited.

It's not full genetic testing of the gene, but it's for a purpose for treatment, there are clues in those reports that this person could actually have that genetic mutation. In every cell of their body. And you're finding in the tumor because you're looking. But those clues are there. And it can be such a powerful addition to a test that's being used for management or treatment.

And so that's where I started wiggling my way in and saying, you know, when you do this report to the oncologist, it's going to be important for you to recognize that there's a mutation in a gene that can be also hereditary. This person could have it because they've had it from the beginning, not because of the tumor causing it. And that needs to be investigated. And so that's really where I think oncology is currently at.

There's a bit of a stopgap, I think, in terms of exploring things because you don't necessarily do it with the purpose of looking for something hereditary or genetic. So that's when I went down this rabbit hole. And that's kind of where I'm very passionate. I feel like everyone should get the same, first of all. And unfortunately, I'm learning quickly that funding and resources become a bit of a stop. Sort of a, I guess you'd say it's a sort of a full stop sometimes. Yeah, yeah. Yeah.

And I think the way these cases are approached is quite different. You know, like when somebody is referred to genetics and they meet with a genetic counsellor, like we sit down and like I think our whole ethos is, you know, to give informed consent and to really explain things and talk things through. Whereas I guess when a lot of people are diagnosed with cancer, So the doctor is sort of just saying, let's do some testing and I'll let you know the results.

And not only are they sort of getting information about their tumour and maybe sort of the medication or treatment that will help it, but they're also finding out that potentially they've got their cancer because of a strong genetic link, which also means that they may have passed this link on to their children. And it's like, okay. Okay, so when in the process are we meant to sort of sit down and talk about this? That's exactly where I have struggled for years with, I guess.

Our training was so focused on informed consent, and we always looked at genetic testing. It was almost special, you know, it was almost a different type of test. It wasn't, you know, like a blood test checking you for diabetes or it was something that was treated, I'd say, white gloved. We white gloved a lot of patients and felt like that was important for them. But now with genetic testing becoming so much more powerful, that's kind of gone by the wayside.

And you're right, like a doctor is not necessarily going to inform their patient, hey, we might check this and we might find something hereditary. And it's just, it's moving forward without that sort of, that consent process. But on the flip side, I just see so many more people getting information that's so important to them. It's almost like a balance. What is more important?

Is it slowing everything down for what we consider informed consent versus, and I struggled with this when I worked in prenatal, you know, people aren't given consent forms that they're going in for an ultrasound at 20 weeks to look for problems. You're not looking just to look. And so it kind of reminds me of that in terms of consent. Yeah. I mean, with non-invasive prenatal testing, it's sort of changed things a little bit.

But like the 20-week ultrasound in the prenatal setting, I think a lot of people used to think it was the sole purpose was just to find out the sex of the baby and it's like oh it's actually a diagnostic test like you know yeah we're really looking at the health of the baby and most of the time the baby is healthy but you know this ultrasound pick up things yeah yeah you're right though it's definitely it definitely it

definitely changing i don't think patients are getting the consent that we had originally thought was so important. I think a lot of it is somewhat of an opt out at this point, but I mean, the greater goal is to keep you healthy and to save your life and the downstream effect of perhaps finding out that you have something you may have passed on to your children.

I think that's where it gets muddy and that's where the, perhaps the specialists in oncology and that they're not quite comfortable, they're not quite comfortable explaining that and going through that. And that's where I think we can jump in and provide support. Like, because I think, you know, when we were studying genetic counselling, like we were really sort of told that hereditary cancer, like these hereditary cancer conditions were super rare.

And, you know, it was kind of special or, you know, like really... Unique. And I guess on one hand, you know, from a public health point of view, testing was expensive and it took a long time and it was complicated. So we couldn't offer that test to everybody. But now that we're seeing, you know, our testing getting better and cheaper and faster, you know, the access is changing. And yeah, we're finding out that more people actually have these genetic conditions

than we kind of thought about. So, yeah, it's kind of weird. Yeah, I think there's been a, I mean, there's publication after publication that has come out, I'd say five years ago, that have proven beyond a doubt that how we should, how we traditionally screen people to see if they should qualify for testing using certain criteria are not good. And they do not catch. It's not something, those glaringly obvious families that have something very penetrant or very, very strong.

They're kind of obvious, but I think it's double or triple, maybe quadruple the amount of people that have hereditary conditions that we ever thought, because maybe they're in genes that aren't as penetrant or maybe, you know, they don't show up. People think they're skipping generations, which we know is not the case, but yeah, it's, it's, it's transition.

I think if I had known when we were training how much more common this was than we had originally thought, it would have been a very different type of. I don't know. I think I would have approached things differently, but that's just learning, I guess, as we go. We're in the middle of learning quickly. That's it. Yeah. And I'm trying to think back. I remember that you went on and did your Master's of Genetic Counseling when

most of us just went and got jobs. And you were doing some research in hereditary cancer in that space.

Just remind me what you did for your research back then. Yeah, it was the psychosocial effect of familial adenomatous polyposis on young adults. So it was, in short, sort of a qualitative study measuring what these young people that have a hereditary cancer syndrome that can present as young people and require quite extensive surgeries and like life-altering types of surgeries, sexuality.

So it was really exploring what types of psychosocial challenges and needs they they were feeling being in their position and it was it was it was extremely rewarding to be able to, talk through that with them because they were vulnerable teenagers I guess you'd you'd say at that stage yeah were they all over the age of 18 or like when young people there were like minors? Yeah, they were, I guess, adolescents. So you would, I think, I think the youngest one I saw was about 15.

But yeah, I think there were some minors in there, which required, you know, certain types of consent. But I was surprised how many people wanted to talk about it. It was, I was, when I went in, it was already well developed through, through the hospital that had sort of started this project. And they said, get ready.

It's really tough to recruit these people it's a long, long questionnaire and it's a lot of follow-up but I was shocked with how much they wanted to participate so it just reinforced the idea that what we're doing is valuable even just to talk about their unique their fears their hopes for the future things like that, and when we think of hereditary cancer conditions I guess the number one that we would think of as BRCA, you know, the BRCA genes.

And then like in the bowel cancer space, we think of Lynch syndrome. And with those two conditions, the thing, and like sort of most hereditary cancer predisposition conditions, the age of onset is like 30s or 40s. Whereas the thing that really differentiates FAP is that it is relevant for young people, unfortunately. Yeah. Right. Yeah. And so... How much more difficult was it?

Like, I feel like it's difficult talking to adults about their feelings on things, but like, were you able to sort of, like, were kids or adolescents able to kind of express their emotions in like a research setting with this stranger talking to them with this funny accent? Yeah, I had sworn that one of the things that made me a little bit more approachable was because I did have an accent. So I swore by that. I was kind of interesting.

I guess it was something that was unique. But once we got talking, I was surprised how much they did open up. You know, you have to always be, of course, very mindful of your language and sort of try to adapt that. But adolescents are a little trickier because, you know, you don't want to insult them and speak to them like children, but you want to certainly have some sort of dialect that they feel comfortable and not overwhelmed.

So as if with any sort of genetic counseling appointment, you had to adjust for that. But I don't remember it being that challenging, to be honest with you. If I wasn't nervous about asking the questions, they didn't seem to be that nervous about answering them. And I think that kind of rings true when you think about all my students that are thinking about genetic counseling or in genetic counseling.

Say like if you put value on something if you're putting your own value or you're scared to talk about it because it's upsetting you then it's going to become awkward but if you can really just just try to take your emotion out of it and keep it open I think it worked well with with them because I wasn't hiding anything and if they weren't comfortable answering that's okay too. And I know like one of the skills...

That we talk about in genetic counselling and one of the skills that you have sort of mentioned is important is listening. And I'm just wondering if you could sort of talk to me a little bit more about listening as like a counselling technique. I think it was, to be honest with you, I got to meet lots of genetic counsellors that studied in different programs. And I think our program was one of the toughest for getting comfortable with listening in silence.

Do you remember those role play videos we had to do? And then we all had to like watch each other and give each other feedback. That was a nightmare at the time. But I'm so grateful for it because I honestly think even with what I do now, when I'm talking to lots of different types of people, listening is key.

And being able to give people the opportunity to think through their answers, you know, that uncomfortable silence that we had to struggle with so much during our training and probably during the beginning of our career, it's powerful. It's a powerful thing. And I guess there's another difference between hearing someone and listening to them.

I think our training gave us the ability to try to, with limited ability, I wouldn't say we're psychologists to that extent, but recognizing a pattern and trying to. Listen to someone and bring that into the next set of questions, it has a lot of power. And I think it just shows a lot of true humility and respect.

And I think if you're like that to somebody that you're just meeting asking very intimate questions the respect is important and i think the listening skills are i think that's what's taken me through my whole career whether it be with patients physicians lab techs just listening asking questions like i think as new genetic counselors are learning sort of different counseling skills they think that maybe it's going to be technical or complicated or complex.

And there are these theories, you know, like thick textbooks about counselling skills. And then when you think about it, it's like, oh, it is such an easy skill. Oh, well, not easy, like, you know, like it's simple, but it can be difficult to do. But then it's so important and rewarding and it can really help build rapport between people. And yeah, it's amazing. Yeah. Yeah. I, it's, it's tough because I think sometimes like you, you described it perfectly. It's, it's not easy.

It is simple, but it's oftentimes not easy to teach. It's not a skill that comes naturally to everyone. And it's something that. It is simple, but it's probably one of your most powerful tools.

I'd say in life, not just genetic counseling. But yeah, I think I struggle with the students that are thinking like they're just so worried about saying the wrong thing or saying something that's going to hurt someone, which is a wonderful quality to have. But I really try to encourage them to just, you know, I think it takes a lot more out of you to be yourself as a genetic counselor because it does take its toll. But I think you get the reward so much more when you're as genuine as you can be.

And also accepting the fact that every conversation isn't going to give you the butterflies. You know, when you're training and you get that patient you really connect with and you feel like, I think I'm really helping and they're trusting me. I said, you have to be careful that you don't get such a, I'd call it a high because it does feel so good. You're not going to get that all the time and just still be just as satisfied without feeling that way.

And you can get there through listening and trying to connect however that person might be it might be completely different than you or you're not getting that, through those butterflies yeah it's interesting you say that because. You know when we meet with our patients obviously there's a relationship there and it could be like such a brief relationship we might only meet with these people once or twice and you know the I don't know.

As genetic counsellors, we're thinking about rapport and, you know, the session will go better and hopefully the people will have a better outcome and they will understand things if there's a better rapport between people. And I think a really important part of that is being genuine. I think people can just see when we're not being genuine.

So part of that is active listening and sort of listening but when you were sort of just explaining listening just then I kind of was thinking you know like sometimes work is just work and it may have may be like the fifth patient that we've seen today where we've said the same thing at the same time and we can sort of go into automatic pilot a little bit and yeah I it's kind of.

It is weird because you want to be there for your patient but then we are human as well and like you know we do daydream or think about oh you know we need to pick up the kids from school or what are we gonna have for dinner or yeah yeah i think it's i think it's i think the people that i have seen the the earliest burnout in are the are the colleagues that really only felt job satisfaction when they had that really amazing rapport that they felt like they were really able

to connect and while that's wonderful there is some self-preservation not every person first of all needs it and you know we're sort of trying to always explore you know you know the active listening and explore building that rapport but sometimes I think it's easy to say I'm not I'm going to have that rapport with this person for whatever reason this person might be in the middle of huge grief and they don't and they don't want so you

can't take it personally and you have to be okay with the fact that, you've got the information to them, they may not want it. And that's okay too. And taking your emotions out of it can be difficult, especially when you get so much satisfaction from it. I think that's a slippery slope. I don't personally believe you can maintain that your whole career.

So finding a middle ground, I think is important, especially for students that are just starting out because they feel like they're under the microscope and every session needs to It feels so great, but sometimes sessions aren't good and sometimes people, patients aren't willing to hear you. They don't want to be there. Yeah. And so you have to try to figure out what's most important without your own ego being part of it.

Yeah, I think that's important. Like, you know, we can take it really personally and sometimes it's not about us at all.

Like so you know to be mindful that you know keep our ego in check and it's not about us and yeah yeah i guess easier said than done though sometimes yeah yeah i think it's i think you just learn as you go and and and someone some patients you'll never forget like i have patients i'll never forget that i just felt like we had this wonderful it just was a perfect timing they needed me and I was in a great place to help them. But that's a small percentage and that's okay.

It's important to recognize the good that you do. I don't see patients anymore now.

So I have to remember that if I'm successful enough at educating a new physician that isn't an expert in genetics, helping them at least get to the point that they can feel comfortable with introducing the topic of genetics because it's going to be part of their health care helping that one person i'm i'm helping thousands of people i'm just not feeling it directly anymore, Join thousands of genetics professionals worldwide who trust TRACKGENE.

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So you mentioned burnout, and I know that that is sort of like a topic that's been in the genetic counselling and probably more broader counselling literature for a little while now. Did you sort of feel burnout in your clinical career and how did you manage that?

Mm-hmm I think I think definitely I I did feel burnout I think that was one of the reasons I really opted to leave clinic and and explore some other options was was burnout in in addition to other things lifestyle choices you know salary those things but yeah I think the burnout definitely came I think it came for me towards the end and I worked in a very very very very busy prenatal clinic with loads of bad news it was all you ever did and

so I got to be a little concerned with the fact that I wasn't feeling it anymore I wasn't I was going in to the morgue to try to you know, see the fetus and sort of help with the diagnosis. And I'm like, wow, I'm not feeling anything. That's scaring me a little bit that I don't feel that. And I think we all, as genetic counselors, I think you start to realize as you get into it, your friendships start to change a little bit, your relationships with your...

You almost become a counselor, even when you don't want it, if that makes any sense. I think a lot of us can relate to that. So I think the burnout was real. I chose to take a chance to get out, but I relied a lot on my colleagues. They became my family, and we still are family to this day. Without each other, I think it would be difficult. And I got my own counselor too.

I found that was helpful to have somebody to sort of be my own, my own personal counselor not that I necessarily had anything specific to talk about that month, but I found that was helpful to just kind of explore that because I think as you start to do more counseling and you get further along in your career you meet different people, you get your own little triggers everybody's got their past right and you've got your own history I think it's good to kind of recognize those things as you

get older that helped me a little bit yeah I think like some of us would get that through like our professional supervision and like we can bring up things but then there is sort of an overlap or like sometimes when I'm in my own personal supervision I think oh maybe this is something that I should actually be speaking to like a psychologist or a counselor about and yeah there's definitely overlap there and I guess it's just sort of it shows that

there is some benefit of talking out these issues all these things that are coming up for us yeah that's a good point yeah I think when I left Australia and came back home. I kind of envied I loved the fact that that it from our program that once you started working you had sort of that senior mentor that check-in that that we didn't we don't have in North America it's not something so official. So once you're finished, you're finished. You have your colleagues, of course.

But I envy that. That's something I would have loved to have had. And I think that that's a wonderful thing that the Australian community does with each other. I'm not sure if it still happens, but that was extremely powerful. But you're right, it does overlap. You do have to be conscious of things that, you know, life is life. We all have personal challenges and triggers and stuff. So I think it's, it, It certainly helped me. Maybe it's not for everybody, but.

It's interesting because my person, my mentor, the person that was there to help me was Louise, the genetic counselor, who, you know, I absolutely love. But she recently retired. And I thought, oh, my God, what does that mean? Oh, yeah, I didn't think of that. What did you do? Yeah, I cried. Oh, no. And she wasn't replaced with you guys. Oh, so you continue to do those relationships through your whole career? I think it was more just kind of informal because, you know, I just, I love Louise.

I think she's beautiful. And like, I loved that she was sort of my genetic counselor. So whenever, and she worked and practiced, lived in Newcastle. And that's where my family are. So whenever, you know, quite often when I would go home to Newcastle, I would catch up for Louise and, you know, maybe we'd have like a glass of wine together or we'd meet for a coffee. But yeah, it kind of, it did change things when, yeah, she retired. It's like, oh, okay.

It's like, you know, like this general theme that maybe all of us have of aging and, you know, time doesn't stand still and we all sort of get older.

But you know maybe this is a good segue i know that you sort of mentioned i heard you say that you think that millennials are going to be the new caretakers and they're not going to accept the status quo and it kind of makes me feel you know like me and you were definitely that generation x gen x yes yeah yeah what what did you mean like are you working with more millennials now and you can just kind of see what the future is going to be like or?

Yeah, you know, yeah, I think I still do students. I don't do official supervision, but we do have like lots of students and I've just, you know. I try to accept every request I can get for students that want to just talk about it, because I feel like it's paying it forward. And I think I've just sort of learned. And I think there was a change when I left the clinic, even with the new med students that were coming in, like they were starting to change rules and saying,

yeah, yeah, I'm not on call for 40 hours. That's not happening. And it made a lot of traditional leadership groups very uncomfortable. And I was like, well, you got a lot of guts to say that's not happening, but they got it. And then it changed everything. So I've sort of started to see this pattern, even with our own students, like they were very aware of their limitations and they did not stand for being taken advantage of.

They needed to be valued and they stood up for themselves so that's sort of what the millennial.

Idea is coming from and just my own experience with with my niece will be 15 and so i'm starting to like you know and i do love tiktok so i will say i learn a lot from tiktok i love tiktok so i'm just my thought is that you know when i think about like my mother-in-law for example, you know when we talk about you know her health things that she's going through and you know she's very respectful and she does trust what the doctor says and she will do what she's told and she would never question

because it's just sort of how she grew up I'm comparing my mother-in-law because my mother is not like that at all like she wouldn't she's the first one you wouldn't you would want as your advocate.

But when I think about that group of that generation, as compared to the fact that now it's going to be caretakers that are going to have to be their advocate for their parents, and I can think about it even for myself, and I think you and I both realize that it's almost frustrating that you know too much to know enough, but it's not necessarily enough. And so I think if my mom ever got cancer, for example, or my dad touched wood.

I would have zero problem fighting to get the exact genetic test that I know is going to be the most powerful that's not covered by our Ministry of Health. And I would pay out of pocket for it without a second. And I would not stop until I was told yes, because I know that it's needed.

And so I'm just thinking like with the millennials that are going to be the caretakers for their, maybe us, maybe, maybe not quite us, but even the next 10 years, I don't think a lot of people that are this savvy with being able to have information at their fingertips are just going to take it at face value. You could simply Google... What's the best way to check to see how my mom can survive bladder cancer?

And it's going to come up. And if it's not being offered, I don't think that the generation that's going to then be responsible for taking care of their parents, maybe their parents aren't in that state of mind, they're not going to take that sitting down. Yeah. Why? Why? Why? I've read these things. I can get access to peer-reviewed journals. Maybe I can't read them perfectly, but I can certainly ask chat GPT, who will tell me everything I need to know.

Why are you not offering this? And if they say, well, it's just not covered, they're not going to be fine with just saying, well, why can't I pay for it out of pocket? Well, we don't do that. Well, why not?

So I'm just, this is where I'm thinking things are going to change. hmm so in canada like is it like is it not easy to just pay out of pocket for a test that you want if it's not covered it's not necessarily that easy it's not it's it's it's and i don't know if it's gatekeeper-ish or if it's if it's really just lack of knowledge or lack of access to. What if I do find something I'm not looking for? And then, of course, it's a very difficult situation.

But yeah, it's not something that's necessarily encouraged, I guess. And it's hard because I think patients and physicians, I completely understand where they're coming from because, you know, we made fun of 23andMe when it started. I mean, we knew as genetic counselors that it was something to talk. I have smelly earwax, and so do I. Like, oh yeah, big deal. But you know, there were some things in there that were important, like CFTR mutations.

Like that was, so to pay in a pocket for something, I think physicians are hesitant because there's so much out there that isn't necessarily going to be helpful, especially in genetics. And I mean, this is something that we struggle with all the time. And you worked in the US, so you know that there's a lot of direct-to-consumer sort of things that I would argue are taking advantage of people.

So differentiating between something that is worth it and that is like a cap clear lab or something that is legit versus not is not that clear. So I can understand from their perspective that they don't necessarily want to do that. And the ones that are legit do have to be physician ordered, right? So it's opening that can of worms that makes it really difficult. I don't think they care if they spend their money on it, but. I think they don't want to do any harm. Yeah.

Yeah, it's difficult. I think, you know, going from Australia where there is a public health system, which is, you know, reasonably good, you know, it is good, you know, it's not perfect, to America where, you know, it's a completely different health system. And if you've got good health insurance or you can afford to pay out of pocket,

you can kind of get what you want. And I remember a couple of years ago when I was living in the U.S., I actually went to a genetic counseling conference in the United Kingdom in London. And a lady or like a genetic counselor was presenting a case and she was just talking about, you know, their national health system and the genetic testing. There was a patient. It just was so obvious to me that they needed like this particular panel,

but they didn't qualify for whatever reason. And I was like, why don't they just pay for it? And I asked the genetic counselor I was sitting next to you, like, how much is the test out of pocket? Like, why can't they just pay for it? And he kind of just looked at me and went, oh, I don't think we can organize that like that. And it's like, oh, really, like every system has its good points and its bad points. And it's not, yeah, like it's not kind of equal.

Yeah, it's just. Yeah, it's a fine, and I do a lot of work in the US. I mean, that that is a good portion. And I've learned a lot. Like I understand insurance now. I know what a CPT code is. I know what an ICD-10 code is. All that nightmare. But when you watch conferences, and I've been a part of a few that have like roundtables, let's say of oncology experts, and one's from the US, one's from Canada, one's from the UK, maybe one's from China or something.

And when they started talking recently about what types of genetic tests are being offered to their patients, like tumor testing for treatment, when the U.S. Doctor spoke, it was a no-brainer. Like, of course, whatever insurance we'll cover, I will order everything, and I'll offer the patients out-of-pocket pay if they want to. They're not scared of it at all. And when the When the other physicians from outside the U.S.

Were explaining what is offered paid for in the province, you could literally see the U.S. Physicians face drop going, oh, my God, like, that's it? Like, two hotspots in EGFR? Like, there's no elk, there's no nothing. And it's this difficult situation because I think, you know, we can't be paternalistic. We have to be able to offer patients the option. And I get it that they're overwhelmed with things that might not be legit, but it's very frustrating.

I love being part of a social health care system. Don't get me wrong. We're the same as Australia in many ways, and I support it, and I think it's wonderful. But I don't think it's going to be able to hold up with what specialty tests are needed, and people can choose to invest in their health if they want to. If they went out and bought a big screen TV to recover for six months, they'd be like, good for you.

But you can't buy yourself a $4,000 genetic test. Like it just doesn't make a lot of sense. Yeah. One of the things I love about you is that you're such a strong advocate and you have this sense of justice and it's really important for you for your patients to get what's right. And when you were talking about your mom before, you said that she is a strong advocate that you would have no worries about her sort of advocating for herself.

Like do you do you come from like do you have a strong family history of advocacy or like did you sort of grow up with that kind of sort of yeah point of view that's a good question yeah i think my my my mom especially she i mean we butt had we butted heads many times when i was growing up because we're so similar but she's a no-nonsense kind of lady she is also very much into science She worked in pharmaceutical oncology for 40 years,

and she was totally patient-focused and just an advocate and just does not take no for an answer. And as much as it made my dad uncomfortable and maybe me uncomfortable, I think I've really learned from her. I think she's probably my biggest. She's kind of my mentor in a way. And you can ask for things, and she does. And I've taken her advice many times, you can advocate and ask for things from people in a very respectful, genuine way. It's all just knowing what you're able to do.

And that's where I struggle sometimes with my mother-in-law. She's very much different. So I just worry about the people that don't have that fight, that sort of, and, you know, and, and as you get sick, if you get sick, you lose that fight. So you're, you're also the most vulnerable when you're the most sick and you're going through cancer treatments and you're scared. And that's the time you need to be the most proactive. And that's the time that you're the most vulnerable.

So yeah, I would, I would say, I would say she's, she's certainly taught us all to stick up for ourselves. Maybe too much, but I just, I think equity is important. And I think patients should at least have the right to make their own informed choices. And if they make the wrong choice. It's okay. Nothing, it's not going to change too, too much. I don't think in terms of if that's the finance they want to do, then they should have the option to do it. And if nothing comes of it, that's okay too.

As long as they know that's a possibility. Yeah. It's going to be interesting to see how medicine changes and evolves because it is always is changing and I know like it's very much in our sort of vocabulary now to talk about Dr. Google and you know like you can you can google things but you know just in the last year or so you know the advances with AI and you know just chat GPT and how you can ask chat GPT you know like as you sort of mentioned before like what would you

do in this medical situation or like what is the best sort of way. And it is interesting because I have seen that, you know, CHAP-GPT, if it doesn't know an answer, it just makes it up and, you know, it can sort of hallucinate, but then it can have very accurate answers. I kind of, yeah, just wonder what that means for genetic counselling.

Yeah, I think our profession's changing and I, you know, in anyone I would say to now that's in the late career, early career, thing of career is things are going to change. And I think things need to change. I don't think that there's not enough genetic counselors out there. And we do have a lot of specialized skills for sure. But I don't think it warrants bottlenecking.

I don't think it's warranting that. I think there's still lots of skills that can be transferred to other healthcare professionals and share the wealth a little bit, because that's what I'm mostly worried about, is I don't want to see, and again, we've seen it, and we see it in Canada, people waiting years to see a genetic counselor to get the genetic test that they know they need, and in the meantime, they get cancer because of their genetic condition that was there.

And that's, I think that trumps anything. I think that trumps anything. I would rather that patient be not consented as well and get the answers and get the screening than have to wait to see us. It's a hard balance. I don't know. And.

Where does preceptorships come into this? Like when you sort of see the future of genetic counselling or the future of medicine more generally, like how does that sort of concept fit into, you know, sorting out these pain points that we have in medicine? I think it's the most powerful thing you can do, to be honest with you.

And I've done a few of them and I've been so grateful to be able to spend a couple of these shadowing, learning, being very quiet and asking a lot of questions because the healthcare system is strained as much as it is, and it's only getting worse. Being able to have the opportunity to watch a clinic flow, to watch where their patients are at, to see who's with them, to see where are the gaps in the system, where could it fit in, Where could something be helpful?

So, for example, finding a time in the patient's diagnostic journey, that day can be a long day, right? And knowing that they need to have their breaks. But what's important for that patient to know and learn? So, for example, if I'm in an ocular clinic, I was able to do some time there and realize that, okay, so something audio would be much better because these people are coming in because they have eye cancer.

So they've had ultrasounds on their eyes all day. So you don't get the opportunity to understand it and realize, like, what is the most efficient way to help the process unless you kind of watch it, learn, and ask questions. and I think. Being able to have the opportunity to see what the flow is like. And I think you could always sort of relate that back to, you know, like an emergency room, right?

Like if somebody's checking in for something, you're not going to try to talk to them about something important to do extra when they're checking in, but you think, okay, if they're this type of patient, they're sitting in the waiting room, that's the time maybe that would work. So I just think those things are just so powerful. And on top of that, there's nothing better than face-to-face and building relationships with the people that are in the clinic. And I don't mean just the physicians.

I mean every admin person, every single person that touches that patient, they have something that they have uniquely learned from that journey that they can help you with. So if you want to try to jump in and be helpful, I think those are the most powerful ways to do it. Well, on that note, I say, Jamie, thank you very much. Thank you. I really enjoyed catching up with you and having this chat today. And, yeah, I wish you all the best.

Thank you very much. I really appreciate it. And I will be tuning into your future podcast because this will open my eyes. Yay, Demystifying Genetics. Awesome thank you a big thank you to my guest today jamie and to you the listener if you enjoyed this episode please do me a favor and share it with someone who you think may also enjoy it.