From Rural Roots to Genetic Advocate. Demystifying Genetics with Kate Wilson.

Hi, I'm Matt, and I am the host of this podcast, Demystifying Genetics.

Today, my guest is fellow genetic counsellor and podcaster, Kate Wilson. Kate is the host of All Access DNA. Join us for an interesting conversation. This is the last episode in this season of Demystifying Genetics. I've decided to change the format of the show slightly moving forward. But please enjoy this episode with Kate. Hello, Kate. How's it going? Good, Matt. Thanks for having me on. Yeah, it's really lovely to be speaking with you and having you on the podcast.

As a fellow podcaster, it is really exciting. I noticed that you have your new podcast that's been going for a few months now. Tell me all about it.

Sure. It's been interesting and it's very weird right now being on the other side of the microphone or computer screen, I guess. So the podcast is called All Access DNA. And I decided to do it with the intent of targeting a general audience. So lay public, not necessarily folks that are working in health care or working in science.

And the goal is to just talk about genetics and educate folks on genetics so that people can see how it impacts things around them how it might influence their daily life and really just kind of give them more of a peek behind the curtain because i feel like genetics is still somewhat of a mystery or something they only hear about like on medical drama shows uh-huh yeah and one thing that is really obvious about you is that your passion for genetics and everybody accessing

or having access to genetics is really important and it sort of took a little while for the penny to drop but then it was like oh your podcast is called all access genetics like why sort of what what's the reason why you're so passionate about yeah everybody having access to clinical genetics Yep, yep.

For me, it actually stems from my family background. Both sides of my family are more rural, kind of smaller towns, one especially rural out in the country. And when several of my relatives were going through different. Diagnostic testing, encountering a lot of cancer. I saw a huge difference into what was given to family members who had the means and the money, quite frankly, to be able to travel or go to additional clinics.

They also had networks where they were meeting with physicians that had knowledge about certain tests that were available or certain clinical trials. And those that did didn't have that access or they're, you know, working in a kind of a country setting with a country community doctor, weren't even aware of some of the things that potentially could have been available to them. And so for me, that was a huge impact, just seeing how where the state somebody lived in, country versus city.

Different areas, and just people that they know were influencing the care that they got and so for me that really started the path and trying to figure out why do some people seem to get these types of things and others cannot and how do we how do we change that yeah that that it's quite interesting that it can be so different within the same country and even within the same state sometimes that there can be like such a difference

based in Melbourne and we have a medical precinct here that's called sort of the Parkville area. And, you know, there are several universities, several hospitals and like some research sort of facilities. And, you know, like it takes up quite a big area, but, and I think it's sort of like the third biggest medical precinct in the world. But the number one is Houston.

I think Houston's either number one or number two. And I remember when I was working at Baylor and like I would visit Texas and go to Houston and there was like 22 hospitals all next to each other. And it's like, oh my God, this is crazy.

Like this is ginormous. For you, did you feel like you were a country girl? And then when you went through your genetics training and then ended up working in Houston, but it sounds like you've gone from one absolute extreme to the other. Yeah. No, I mean, I grew up outside of Atlanta, Georgia, which at the time was somewhat smaller, you know, still a pretty big city these days. And we still had, I think, a lot of opportunity. But the healthcare industry probably was not as big here at the time.

And my dad was actually diagnosed with melanoma when I was seven and had to fly to Houston to be treated at MD Anderson. So that's actually my first kind of introduction to that medical center was when he was receiving treatment there. He was part of a clinical trial. And so I think that's kind of where I first realized it.

And then my family that was more on the countryside, I started accompanying some of them to their checkups, especially as I was thinking about genetic counseling, and then some of it was after grad school. And so I was living in Houston, and just that juxtaposition of working in that number one or number two med center that's massive, and then going out, you know, where the nearest hospital is still 30 plus minutes away, and it's not a tertiary care center, it's pretty small.

And just seeing, talking to them about, you know, have you heard of genetic testing of the tumors? Have you heard of comprehensive genomic profiling? And some of the doctors, you know, had heard about it, but it wasn't something that either one, they've had a lot of training. They may not have had a lot of reps from the labs coming to talk to them about it or telling them what the different tests were that they could have. And it may be some too that we're seeing all cancer types, right?

So they weren't just specializing in one so they were having to cover a wide knowledge base and so it's hard to keep up with all of that and so i think that was kind of for me it was seeing that going back and forth between the two extremes and having several family members unfortunately who are being treated for cancer but in all different areas of the country i was thinking about like genetic counselling training and sort of what responsibility we have as genetic counsellors to be

sort of involved with educating the medical community on genetics.

I guess like from one point of view, we could say, you know. Our students are doing a master's of genetic counselling. We're training them to be genetic counsellors who work in clinic and they're And we sort of just want them to be genetic counsellors. But then on the other, you could say, well, they're going to be these masters educated, you know, healthcare providers of genetics in the community.

And we need them to be able to, you know, speak well about genetics and educate different healthcare providers. Do you think that that is something that genetic counselors should be learning at grad school? Is that part of the responsibility of our courses? I mean, I don't know if it's necessarily a responsibility, but I think it's part of what we do because in our training, we learn how to communicate with patients, right?

And so we learn how to help them understand how something, diagnosis or a test or a service may change things, right? And we try to help them walk along with that informed decision or help them figure out how they want to proceed, what the next steps are. And I will say, like, from working with patients, taking that same psychosocial framework, it works with clinicians, it works for providers, it works when I was in industry.

Honestly it was one of the skills I think that was most appreciated that I brought to the table in business meetings and finance meetings or talking to bioinformatics teams is that ability to take complicated genetic stuff make it more simple to understand help translate it but then also work with different people coming from different areas to find out, What does it mean to them? How does this information impact you and what do you need to know to be able to move to the next step?

Yeah, I remember one of our assignments at grad school was to actually do a presentation in the community. So we had to pick a community organization and sort of approach them and say, you know, I'm here to be a guest speaker. or I can talk about anything about genetics. So I guess, you know, like that was included in our training now that I think about it.

And I had the chair or the occasion to review the code of ethics of genetic counsellors from the Australasian Society of Genetic Counsellors the other day. And one of the sections is actually genetic counsellors' responsibility to the wider community.

So it is interesting that we are getting trained in such a specific skill to work in a hospital speaking to patients but then genetic counsel is just a skilled at sort of i don't know it's just part of our ethos to be able to speak about genetics to like different sort of people in the community yeah and i would say that it's kind of we talk about like transferable skills that's one of the things I've been kind of harping on with some of the programs that I work with is that the skill set,

it doesn't have to just be with patients that you're talking to in clinic. Like you can pick these different skills. And I think it's interesting you mentioned talking about like getting out in the community. I don't necessarily think it's something that we're taught in depth, but I think we're given a basis for it. But I do think it's important for genetic counselors to continue to maybe refine that skill set as they they get out and practice because.

Well, in the U.S. at least. We're living in an age with a lot of misinformation, a lot of misunderstanding, a lot of challenges with trying to understand how science works and what studies are showing. And so I would say that I think it's important for genetic counselors to be those ambassadors to the community, right? To be able to talk to people in the community and answer questions or direct them to services.

And I think we're well suited to it because we have that psychosocial training so not necessarily everybody in healthcare or science has that but I think we're naturally teed up in a way to be like science communicators which is part of what I've been learning more about as I'm doing the podcasting is what does it mean to be a science communicator and how do you work with people from all walks of life to help them understand this information.

Now you have children and I I know that you were involved with teaching in your son, I think your son's science class. It was at a grade seven level. How did that go? It went really well. I was probably more nervous than I had been in a while teaching because, you know, it's 12-year-olds, 13-year-olds. And it was the day before our winter holiday break. So nobody was really wanting to pay attention.

But I liked it because it allowed me I think in some ways to have some fun with it you know I think sometimes we get caught up in being very like academic or here's what the data you know and it can get very dry so for this one it was more again what were they interested in well they, a lot of them are interested in like cold cases and the gold state killer case had happened and They're like, how do people know these types of things? So we did an example where we had people,

gave several folks, you know, different suspects. And I was like, these are the traits and here's how we would narrow it down. But then now we have DNA evidence. So how do we narrow it down from there? We made, and then the other plug I would always just say is you never go wrong with like candy or food. So we made DNA out of Twizzlers and like marshmallows. And so that was also a huge hit.

But the thing that struck me the most was the questions. I mean, it was just because they're, They're teenagers, they're kids. They're just like, I'm going to ask whatever. This is, you know, my chance. And they were asking me all kinds of stuff that I've never been asked for from an adult. So it was just really interesting to see. And they were like, you know, could somebody take the DNA and do this? And do you think it's possible? We got into a discussion about chimerism.

We got into discussions about what to do if you're adopted and you don't know your family history.

So some of them were you know really thought-provoking and some of them were i i think some really challenging deep questions so i think it was extremely helpful one for me to sort of see 12 year olds are thinking about it they just might not think about it in the same way my adult audiences but they are thinking about it and then also it's okay to to have fun with it and and give them that information because especially like you just want people to be get more curious and to keep

asking those questions really wow and what was the reception from the teacher oh she was very supportive so i had once i my son did not want to tell me they were getting ready to do a genetics unit and i was like awesome i'm gonna email the teacher he's like please don't i was like i'm coming to teach and so the the teacher was extremely supportive she had an interest in genetics she had had some personal kind of cross paths with folks in the genetics profession and

so she was extremely supportive of it and i think just appreciative that that. Also, we could do this lesson on a day where she probably didn't have much planned, too, so it was probably nice. But she was great. And what was the reception from your son? Was he like, oh, mom, you're so embarrassing? Or was he really proud? Yeah, because I taught several classes that day. So only one that he was physically there for, the rest. But I did tell him, I said, I'm not going to tell stories about you.

I'm not going to call you, you know, my pet names or anything. I said, I will just completely ignore you unless you want to talk to me. Because I remember what it was like being a teenager. And at the end of the day, at the end of the class, he was like, yeah, that's my mom. And he was talking to people. And several of his friends approached me afterwards. And they were just like, I had a bunch of questions for me. And then they were like, we just want to let you know, your son's a good kid.

I was like, well, I appreciate that.

But now, when you speak to many genetic counsellors, I think that the question that we get asked a lot is, how did you find out about genetic counselling or when did you want to become a genetic counsellor? And most people, I would say, sort of respond saying that they found out about genetic counselling when they were doing an undergrad science degree. I actually found out about genetic counselling when I was in grade nine.

And I feel like personally, I was quite young, but now I'm thinking of these kids in grade seven and you're talking about your job and genetic counselling. Like, I wonder if any of those children will go on and be a genetic counsellor and they will say, oh, we had this genetic counsellor called Kate. She came to visit us at school. Yeah, that'd be really cool. That would beat me in how early we found out about genetic counselling.

I mean, that's what I'm hoping. And I think that's the thing is you've got to, if you want people to be more receptive, more open, again, to learning things in the scientific community, like, get them early. That's when they're so curious and they have so many questions. And that's why I was like, I will entertain any question you have for me. There's not a question that's too off the wall or too crazy.

And it's interesting that you mentioned that because I've talked to a few genetic counselors who heard about it in middle school.

Ninth grade I I never I didn't hear about it until the the day before I graduated with my undergrad degree I am also just in full disclosure what people would call I prefer exennial some people may call me an elder millennial I'm right at the cusp so so it was not yeah I it it was I think there weren't even 23 programs maybe in the United States and there's what 60 or 70 now so So yeah, it was a long, a while ago and it was even harder to find out about.

Yeah, that's crazy that there are so many genetic counseling programs and, you know, there's obviously a demand for, you know, the students and the, you know, it's harder to get into genetic counseling in the United States than medicine. Like it's so sort of competitive and difficult. But then I do wonder if there is sort of the demand for genetic counselors working in the United States. I think that's a real challenge right now is have we maybe reached some sort of threshold?

I don't think so. I think part of it is we still have clinical positions, clinics that we're going because people will still need care. you know, in the U.S. I think some of the industry stuff, the industry market has contracted, you know, there's been some acquisitions, some companies that have, you know, declared bankruptcy and different things like that. But we also...

Go through times like that. I think this is the first kind of major one in the U.S. that we've seen on the genetic counseling industry side. But I also know that when I graduated in 07, there were no jobs. That's how I ended up actually in Houston. I said, I will never do prenatal and I'm going to live in Georgia because that's where my family was. So I ended up doing prenatal in Houston, Texas, which I never would have imagined in a million years.

Yeah, that's so funny because, yeah, I finished in 2004 and there were eight students and seven of the students really loved cancer and I wasn't really into cancer genetic counseling. I sort of was like, I really liked general and there just weren't that many jobs. There were no jobs. So So at the end, I remember thinking, I will take any job anywhere just to get my foot in the door. And I applied for a job in a town in Australia that I had heard of, but I didn't really know where it was.

I had to get out. You know, this was before the internet. I looked it up on the... I was going to say, we didn't even have smartphones. Like you couldn't... I was thinking, did I really like literally get out of that? No, I must have looked it up online, But I remember I had to look it up, like, where it actually was. And then a big part of the role was cancer. And I thought, this is interesting.

Like, we don't know what's around the corner and we can sort of want something really specific, but sometimes it takes a few steps to get there.

Yes, definitely. Yeah. So, I guess like a lot of genetic counsellors in the United States, you did your time in clinic in like a clinical role and then sort of went into industry. So, you worked for a big diagnostic lab and I know that you sort of left sort of the genetic counselling side and went more into like the business or product development or product management side.

And that's not something that has happened so much in Australia at the moment, but I'm just wondering if you could tell me sort of about how you used your genetic counselling skills in a role that is not really genetic counselling, but genetic counsellors do really well in that position.

Yeah, and I'm glad that you said that they do really well, because I think it's one of those things where having worked at that lab for 10 years, having a network of genetic counselors who have made different shifts at other companies, and even in other industries, not just within diagnostic labs, They, there's always the moment where you have a genetic counsel that makes it to some sort of role or gets into this position.

And I think a lot of the business people go, oh, we didn't, we didn't know you could do that. Or we didn't know that you could be successful or that you would do a good job in this space. And I think, again, a lot of that goes back to the transferable skills. I think it goes a lot to the psychosocial training, because a lot of it is just communication, talking to people, working with people.

I think a lot of it, especially in product development, I was on a lot of meetings with a lot of different viewpoints. And people that, you know, like I said, one person, you know, speaks bioinformatics, one person speaks policy, one person speaks, you know, in sales revenue. And so I have to try to get them all on the same page, or at least moving in the same direction, right? What's the same common goal? And part of that is, is listening to what different folks have to say,

helping them make informed decisions. I mean, honestly, some of it's just very basic, like I contract with them in a meeting, we set an agenda, right? And we go through. Empathy is huge, just having that kind of emotional intelligence and being able to navigate people's feelings, because they're all people, it doesn't matter the background that they come from, and they are going to come from it, bringing their expertise as well.

But you also have to navigate what people care about in their job or what they care about that they're bringing to this position and so i think a lot of that is just we get training in these areas maybe not explicitly but we can pull into them and so that's why i like to tell people to really think about the skill set that you're bringing and not just say oh i have a genetic counseling degree like that's important but you also need to be able to articulate

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I see, you know, one of our, in Australia, we have two training programs for genetic counselors and, you know, we have a population of, I don't know, 26, 27 million, something like that. And one of the courses is at the University of Melbourne and it's, that course has been around for many years now and it started in the nineties.

But just recently they created a new master's program that is sort of masters of genomic medicine or genomic health or something like that so you can't graduate and become a genetic counselor but you can graduate and sort of get some of the roles that I see that genetic counselors are getting in the United States so I feel like you know a lot of the trends or a lot of the things that have happened in America sort of maybe a decade down the track are happening here

in Australia but yeah a lot of our genetic counsellors are still sort of clinical and not working in that industry but yeah I find it fascinating and having spent time in the United States seeing the different positions that genetic counsellors are in and sort of what value they can bring to the organization and yeah it's fascinating yeah and i think there's that's why i think you know some people have concerns about the job market but that's also why i i think those the concerns are valid but

i also think that there are still room for expansion because i think there are some roles there are some roles that we don't even. Know about that are going to be created over the next several years, right? And then there are other areas that I see genetic counselors getting into, especially in terms of things like policy and regulation, because here in the U.S. we operate, you know, with the FDA. There's been a lot of things going on there, and especially in terms of like laboratory tests.

So I think there's a lot of opportunities and ways that genetic counselors can utilize their degree and skill sets, maybe in just the way they didn't know about at the time, right, when they're in graduate school. Because that's the other thing is graduate school, it packs in a ton. You're doing a lot in a short amount of time. So I completely understand why it's hard to get too in-depth in like just the business of healthcare and that sort of background.

But I do think those folks that are interested in that area, that's an area too, is just trying to kind of carve out how do I get that experience? How do I find maybe like a mentor in that space? And so I think that's been helpful too, to try to bring more folks into these job positions. And is that sort of part of your role, how you work with different programs? You mentioned that you work with different programs. Like do you come in as like a guest lecturer or do you teach a specific program

or do you work as like a mentor? role? A little bit of all. I love teaching. So that's honestly how I got to Houston was I didn't want to do prenatal, but I wanted to work in education. So I worked with the program there that just happened to be a prenatal role. So that's one thing that even when I was with the laboratory, I started like a student rotation there and I was always reaching out, trying to teach with programs.

So I have a couple of programs that I work with, and I will say primarily what I do is talk about the business of health care. So a lot of the United States, again, we have, we don't have universal health care, it's private payers, but there's also state funded plans, federal Medicare plans.

And so one of the things that I try to do is talk about the broader ecosystem and how billing happens, reimbursement happens, and what does that mean for genetic counselors in clinic as well as genetic counselors in industry, and kind of trying to see how what we do, the role that we play in that greater ecosystem is one of the things that I talk a lot about. For the Emory Genetic Counseling Program, I'm actually a course coordinator for one of their fall courses.

And so for that one, we do delve into business skills, such as like negotiation, job search, interviewing. We also talk about kind of, again, other career paths that might be available. So we had somebody come in and talk about what they do in their marketing role. We had Kira from DNA Today come and talk about being an entrepreneur and starting your own type of thing in your own business.

So the goal is to, you know, it's not exhaustive, but it's kind of giving a little taste, I think, of here are some different things that you can do, but also trying to help the graduates, you know, land the first job and come out, you know, equipped with some initial skills.

Just you know some of them that might be their their first position or full-time position so you know it's also thinking about like you know what do i do with the 401k what do i do with you know my health insurance and so some of it's just practicalities as well.

America really is a complicated complex place and i apologize that i'm not as as aware of how things work in australia so it's one of the things i've been trying to learn more about is the countries that do have more universal types of health care yeah well it is interesting because when it's universal like because superficially or like on one hand you can kind of think that universal health care is excellent because

it provides everybody with health care but because it provides everybody with healthcare, I feel like the, what you get or sort of the average is dragged down. Whereas in America, you either have health insurance or you don't. So it's kind of, it's more binary. And so if you don't have health insurance, you're not going to get any access to genetic testing.

But then if you do have health insurance, it's like your access, I mean, I, you know, like I'm speaking very generally, but it's like when you do get access to genetics, the possibilities are almost endless or you know like you you can sort of get access to many more things.

Yeah like i remember i went to a conference in england where they also have universal health care and they were talking and this is when i was living in the united states and working for a lab i think and the genetic council was just talking about how somebody needed a test and they were trying to get them to meet criteria and they couldn't quite get them over the line and you know the genetic counsellors were talking about sort of different

methods and like I said to the genetic counsellor next to me why can't they just pay like why can't they just pay for a test you know and they said oh you know that we can't do that here like you can't just sort of buy your own or you know like pay so yeah it's interesting that there are these different sort of healthcare of ecosystems and genetics sort of evolves within them and you kind of have to learn the rules and sort of yeah be able to sort

of negotiate and and sort of work out the best for the patients yeah and i don't know if you felt like like that in the u.s because that's one of the things i hear from students and practicing jet counselors is is there's so much on the job learning because you know, it's, we have the private health plans. Some of them cover certain genetic tests. Some of them still don't. Some of them say, oh, you can have it, but it's what has to be called your deductible.

So on those plans, you have to meet a certain amount of money. So a lot of times there are high deductible plans, meaning $5,000 or more in a calendar year. So if you have an unmet deductible, I have not paid $5,000 out of pocket yet for the healthcare and the insurance that I kind of already pay for. Then the test isn't covered. So I still have to pay out-of-pocket for it. And then we have like Medicaid, which are state-run plans.

They tend to be more for like kiddos and those that are pregnant, but there's other folks that can also fall under that umbrella. Some of them do have genetic testing coverage, but again, maybe it's more like universal at that point because there's certain criteria, right, that you have to meet to be able to have that. And same with Medicare, which is the federal...

Insurance for lack of a better word that is mostly for older folks and so like for that for example like in cancer care you could have a genetic test for cancer like a brca gene but you yourself have to have some type of cancer related to brca if you're unaffected that's not going to be covered, so that's that's the challenge i think in the u.s health care and that honestly it's hard to teach And even for those of us that practice in the U.S., it's still hard to understand the ins and outs.

And so I don't know, did you ever feel like you got a sense of that when you were here in the United States? Or was it still just like, I don't know what's happening? I remember when I first started, like when I first got my first full-time job in the United States. And I had to go and speak to someone at HR just about entitlements and, you know, signing up for the 401k. and, you know, everything kind of seemed sort of understandable.

You know, like I had been working, you know, as an adult for years. You know, a number of years. But what was really different or hard for me to get my head around was understanding health insurance. And speaking with the HR advisor, I just think we were like coming in at different levels.

Like she had, she, she assumed that I had all of this knowledge and it was like, she was talking like I understood, like, and I was like, no, no, no, no. Let's take a step back like let's yeah like you need to explain and you know like she was talking about open enrollment like it was something that you know everybody understands and I was like what do you mean I can only sign up at certain times of the year like what if I want to sign up outside opening like this

is just absolutely crazy yeah so it it didn't yeah it was complicated and took me a long time to sort of figure out and and then even just you know like i'm young and healthy but just going to see the doctor and it's like well what card do i use and then do i pay anything and what it goes to my insurance but you know and and even like i i was working for a company that was based in texas but i was living in new jersey and you know were my doctors in network and out of

net worth. And it's like, well, what does that mean? Yes, it is. Yeah, and that's the thing. It's hard to, I think, as a clinical genetic counselor, I remember when we started having more of these conversations with the patients because the patients, you know, there's a huge burden right now in terms of medical bills in the U.S. And so I do feel passionate that genetic counselors need to be aware of that because it's a significant financial burden for quite a few folks.

You know, there's people that Will not do it a test that they need or will not get a service that they need because they're like I just I can't afford to pay for it and those These are sometimes people that do have insurance and they still can't afford and some of these things. And so I think it's one of those things where I go back and forth. I'm like, as genetic counselors, how much do we talk to our patients, right, about the finances?

Because I feel like sometimes it can be beyond our scope. I mean, we're not financial counselors. We're not, we don't have that training. But sometimes we're the only person that's talking to the patient or the family for an extended amount of time that they feel they can ask. And so it's always a hard position, I think, as a clinical genetic counselor in the US, trying to figure out how far do I go down the path of what does this

cost and what's going to be covered, what's not going to be covered? Yes. I think when we meet genetic counselors, we're all very similar. Maybe it's like a little bit of a stereotype, but then I guess stereotypes are based on things that we see.

Genetic counselors are intelligent warm empathic good communicators and i think that maybe you know the downside of that is that we have a tendency to say yes or to you know you know the good thing about genetic counselors is that we want to help people like we really are there to try and to help people but i guess yeah the downside is maybe it's not always our role to be helping people and like as you said like we might be the only person like health care person and we

sort of identify that they need help with one particular area but it's not really our skill set or you know it's not really our role what i wanted to sort of talk to you more about was sort of boundaries and like how sort of professional boundaries, but then just sort of life boundaries. Yeah, I don't know if I've given you enough to talk about or if I need to ask you a more specific question or... No, I mean, I think this is always something that's good to explore is boundaries.

I think it's something that always continue to come up And I've seen it come up, especially in terms of like post-COVID, where we have a lot more folks in the counseling field working remotely. I've seen it over my career. So like we were saying, I didn't have a smartphone when I first started working. I think they gave me a beeper and my laptop. So I couldn't check my email right at like 11 o'clock at night.

That's been a growing challenge in that I do feel strongly that you've got to set some sort of boundary, whether that's I will not check my phone or my email on my phone past six o'clock at night. That's my quitting time. Or what I would do is anytime I was taking paid time off for vacation, I would remove the email app from my phone. So I wasn't even tempted to try to check it because I also am somebody where I'm like, I recognize that sometimes it's easy to say, you've got to set a boundary.

It's a different thing to actually do. Yeah. And to actually hold firm in that. So sometimes what I do is I do engage my family to help hold me accountable. Like make sure I don't do this or, hey, say something to me if you notice that I should be, I'm trying to multitask and get too many things done.

But I think to keep from having additional stress or even getting into that burnout phase, the boundaries are hugely important, whether that's this is my work time, this is my not work time.

The other is also i loved having a job that was flexible and that i could like take phone calls from the car but one thing i've noticed since leaving my job so i'm i don't work full-time for the lab anymore is i now have more conversations with my kids in the car which i never did because i was usually on a meeting and carrying them to like various activities and i'm not saying it's.

Everybody has to make their own decision what their boundaries are for me it was eye-opening to see how many more meaningful conversations I had because I was not aware on what I was missing out I also know that my boundaries are different than other boundaries because I have depression I have anxiety so there's certain things that I have to be very mindful of like this is what I can put up with. This is what I can't put up with.

This is when these are my warning signs that I'm starting to feel overwhelmed and I need to take a step back or do something that's going to help me kind of breathe and calm down. But that's, you know, what, 17 years in the field at this point.

So it's, you know, it takes time to kind of figure out what the limits are, how to enforce those limits and there's always going to be times where even now i'm i'm self-employed and i love what i do but that also means that sometimes it's harder to even walk away and set those boundaries because i really am enjoying some of the things that i'm working on but i'm like you know what i've been doing this for the past four hours it is time to take a break yeah yeah yeah.

Yeah, it's fascinating. It's interesting. I know personally, I like to think of myself as like quite a relaxed sort of laid back type of guy.

And I think that in genetic counselling training, we do a good job of talking about self-care and the importance of supervision and there's a lot of research in the genetic counseling area about burnout but part of that is the the concept the idea of boundaries and i'm not sure if that's something that we talk about a lot and i know myself i kind of think oh you know i'm good at sort of separating or setting boundaries but something that's taken me a little while to sort of

figure out is i think that personally.

When I've got an issue or when something's coming up for me like I realize that it's affecting me when I start dreaming about it and yeah there are times where you know maybe I've got some issue and I think oh it's cool you know it's all fine and I think I don't know if this is like denial or you know like I'm putting it off I don't want to think about it and then my subconscious is like no we're going to think about it we're going to dream about it and that's like Yeah.

You're going to try and work it. I was trying to tell you, like, I think that's a huge thing. It's just, like, that pay attention. Like, I have found, I was like, we have a kitchen island. And I'm like, when that thing gets out of control, it's usually an indicator that I'm feeling out of control because I'm not, like, putting things away, right? So, it's trying to find those warning signs to say, okay, this is telling me that something's got to give or something's not working.

Yeah, yeah. Yeah. So, one thing that I also wanted to speak to you about, which I find fascinating, is the article that you were involved with when you were working in industry. It was published a couple of years ago, and it was called Abandoning the Word Caucasian. I've got so many questions. Okay. I guess, so firstly, you guys were working, so the four authors, you all worked together in the diagnostic lab. Mm-hmm. Was sort of writing and publishing part of your role?

Like, were you expected to actually be producing genetic counselor? No, not in my role as product. Yeah, product director, no. So it was something that fortunately the group I was working with was supportive and knew that I love genetic counseling. So I was able to work on some things here and there, but it was not expected.

Yeah. So then as genetic counselors not working as genetic counselors, but you are a genetic counselor working in the same organization, do you think that management sort of saw that as a beneficial thing that like if a group of genetic counselors want to come together and, you know, write or research a really interesting topic, that that was actually something that was seen as a good thing, not only for them personally, but for the company as a whole?

Yes, I think it's been something where probably I would say those of us that were there for a few years kind of tried to start making inroads with like our, because again, it was a large corporate lab. So there's a lot of red tape whenever you publish anything. So there's medical writing teams. There's all different kinds of review process that happened just within that company before you would like submit to the journal.

And they were all very supportive of it. And I think they understood, too, that sometimes academic pursuits can also better inform folks that don't work at that company. But you could also, I mean, use it in terms of like marketing, like we support, you know, the genetic counselors that work here and help them continue academic pursuits that they want to, you know, work on.

As science communicators, I think something that genetic counsellors and science communicators understand really well is the idea of the difference between a recreational ancestry test and a proper medical test. And your article is sort of talking about ancestry and the word Caucasian and that sort of thing. It's just from like a proper diagnostic lab.

Those type of labs don't do ancestry testing like there's not a product where you can send in a DNA like a sample and get your ancestry done but in some of the genetic tests it can be helpful knowing the ethnicity of the person who's taking the test and I think we sort of get that but from a lay person point of view that that is a difficult sort of concept how much did ancestry and ethnicity and sort of like how much of that was an issue for you working in the lab or like from

like a proper lab point of view and proper inadvertent comments. Yeah. I mean, I think, you know, on the lab side, a lot of times it's kind of demographic information that you're getting, right? Some of it is things that you will use in interpreting the test results.

So sometimes the ethnicity can be important, depending on like, I know there's like, what is it, that kidney fraction, like ejection fraction, there's certain types of tests, right, where we know that there are different ranges based on ethnicity. So you don't want to apply the wrong range to the wrong person. I think sometimes too, labs and clinics collect this information and they don't know why, they've just always done it, right?

So they just always collect the information because they're like, I don't know, it's their standard form. We've always used it. And I will say that was one of the things that the authors, we were kind of trying to push that conversation, which is why are we still using some of this terminology when that's not really what we're looking for or what we mean if we are going to be collecting ancestry or ethnicity?

Because I think about it, also we're getting this information, a lot of the diagnostic labs do want to publish, right? They want to publish some of their findings Or they sometimes will publish interesting case reports. And one of the things that we may look at is, you know, looking at it through different ethnic groups. Is there a difference between ethnic groups? Is there not? Especially in terms of, like, genetics.

And it makes it really hard to do some of that back-end data review because people are checking Caucasian and I'm like well but that that's not really an ethnic group that's not really an ethnicity and so again you know it would also say the same thing as like if you're trying to ask about Asian right it's not all one group you know there's there's different subsets within those, kind of broader terms that people use.

And so part of the reason I'm writing the article was like, how do we change this working in a lab or a clinic? How do we add to the literature that's out there so that if somebody goes to their place of work and says, hey, I'd rather, let's change this form up. Let's make it more correct in what we're trying to ascertain.

Let's actually ask, if we're going to ask about it, let's ask about it correctly so that we can actually understand the data that we're getting if we want to stratify it by ethnic group.

So I think that was one of the reasons for doing it was then to be able to utilize some of that information about here's why we should change wordings on some of the forms and we shouldn't just necessarily do it because we've always done it. And then I think in some cases too, you're also trying to look to say, is this really information we need to be able to report this test? Maybe, maybe not. Sometimes it's good information to have because you're able to then stratify it.

And that's how we learn about different types of like healthcare disparities, right? Because we're able to stratify it in different ways. So I think it's just one of those ones where if you're going to collect data that you don't necessarily need to run the test as a lab, just be thoughtful about what you think you're going to do with that data or how you're going to look at that data. And don't just do the form because you've always done the form that way.

Hmm yeah sort of being me me sorry i'll say that again try to be more meaningful in the process and yes yeah yeah i i really loved the paper because it was like a history lesson because you know i had no idea about sort of the evolution of the word or the concept of caucasian i sort of knew that there was this trend in our industry to to move away from saying caucasian and to start saying white but it was really good now that we've got something that's published in a literature

that we can sort of refer to yeah i remember a couple of years ago one of the places where i worked that we were talking about this study where because the the trend also in genetics has been to move away from ethnicity-based testing and one of the reasons was that a lot of people don't know their sort of their own personal history and I remember there was one statistic where it was sort of like you know this really large amount of people didn't actually even know where their four

grandparents were born and I thought that's ridiculous like of course you do everyone knows that and I went home and I spoke to my husband and he was like oh I don't know where my four grandparents were born I'm like what do you mean how do you not know that so yeah I guess it is surprising how sometimes we just do things because it's always.

Been done that way and you know that's not really a. Good enough reason to keep on doing it if there's no sort of plan to doing it yeah and i think it's at least helpful to ask the question because maybe you ask the question you do find out oh here's why this is why we're doing that okay well now i know right and this is how it's meaningful but sometimes it is it's just you know again and what's hard i think on like for large clinical, large laboratories is.

You know, there's people that sometimes make these forms that have nothing to do with genetics, right? They want to standardize as much as they can. And so sometimes that does make it a bit more challenging trying to update or try to get some of the things that you're trying to get as a genetic provider and possibly somebody who's going to be looking at the data and doing some research down the road. Yeah.

Well, Kate, thank you very much for your time today. I've really enjoyed speaking to you about all of these really interesting topics. And yeah, I think I'll let you go. Thank you so much, Matt. I enjoyed it. Okay, bye-bye. Thanks again to my podcast guest, Kate Wilson. And also a big thank you to my editor, Angelica, and my sponsor, Track Gene. And if you could do me a big favor, please rate this podcast. It really does help get this podcast out there. you.