Demystifying Genetics with Kira Dineen

Kira Dineen shares her transformative journey from a curious teenager to an award-winning genetic counselor and podcaster. The conversation explores the nuances of genetic counseling, the impact of technology like CRISPR, and the unexpected connections that shape careers in genetics.

• Kira discusses her personal journey into genetic counseling 
• Emphasises the balance between technical skills and patient care 
• Addresses common misconceptions about the emotional weight of the profession 
• Shares insights into the groundbreaking use of CRISPR technology 
• Highlights the importance of podcasting in enhancing professional growth 
• Explores the unexpected recognition from Kourtney Kardashian’s blog 

Call to action: Find out more about Kira and her podcast, DNA Today, at www.dnatoday.com.

Chapters

• 0:01 Genetics Professionals Discuss Career Paths
• 10:40 Analyzing Karyotypes and Genetic Counseling
• 16:12 Genetics, Podcasting, and Genetic Counseling
• 24:02 Genetic Counseling Around the World
• 36:54 Paternity Testing and CRISPR Advancements

Transcript

Matt Burgess: 0:01

Hello and welcome to Demystifying Genetics podcast. My name is Matt Burgess and I am your host. I am a genetic counsellor living and working in Melbourne, Australia. This is a podcast where I interview people working in genetics, such as genetics doctors and genetic counsellors, and the general public who may have a family history or may be affected with a particular genetic condition. On today's episode, I speak with Kira Deneen, a genetic counsellor based in Connecticut in the United States and also the host of one of the world's most successful and popular genetics podcasts, DNA Today. Hello, Kira, and welcome to Demystifying Genetics podcast being made today. Hello, Kira, and welcome to Demystifying Genetics.

Kira Dineen: 0:48

Hello Matt. It is so good to hear your beautiful accent again.

Matt Burgess: 0:52

I've missed you I know we haven't had a chat or haven't seen each other for a while. How's it going?

Kira Dineen: 0:58

Good, good, it's been a couple of years. I think we ran into each other at one of these conferences it was probably on SGC a couple of years ago and I was like, oh my God, it's Matt. But yeah, so from last we like actually talked and didn't just email. You moved back to Australia. So that's exciting.

Matt Burgess: 1:15

I did. Yes, we were in Princeton, new Jersey for about four and a half years, and it's funny actually, because this week is actually our one year anniversary of returning to Australia.

Kira Dineen: 1:29

So yeah, time is going quickly.

Matt Burgess: 1:33

But let me sort of introduce you a little bit. So I think that you are an amazing genetic counsellor. You are the host of DNA Today, which is a great podcast that's out there, and you've won so many awards, like the Best Science in Medicine Podcast Award, and your podcast is in the top 1% of podcasts globally. Tell me about that. How is that going? How is that to be so successful and popular?

Kira Dineen: 2:07

Yeah, I mean it's been a wild ride, because for many years we were just getting trickle of downloads. But I was like I just I love talking to people in genetics and I started the show 12 years ago when I was still in high school. So it was a great excuse for people to sit down and actually talk to me and not say, oh, you're a high schooler, like, come back when you're in college, because I just really wanted to learn about genetics and all the different career options within genetics and ended up going with genetic counseling, like you did, matt, and you know it was just. It's been so interesting to see how genetics has really changed in the last 12 years. And just our show has changed a lot too.

Kira Dineen: 2:43

My voice is much deeper now than it used to be as we all age, but it's funny listening back to anything early days. I'm like, wow, wait, that's me talking there, like so different. Also, I have a better mic now, so that probably helps too More of a professional setup. Nowadays I'm not using the mic that came with the Rock Band from PlayStation anymore.

Matt Burgess: 3:03

So yeah, that was the original setup, yep.

Kira Dineen: 3:07

Rock band, PlayStation and my microphone stand was just the Harry Potter series. It was a really good height if you had all the books stacked up and yeah, so I'm basically just proving myself to you in more ways than one, that I'm a nerd in many different areas.

Matt Burgess: 3:23

Lovely.

Kira Dineen: 3:24

It's been fun.

Matt Burgess: 3:25

You started in high school. I'm a nerd in many different areas. Lovely, it's been fun. You started in high school and then you've mentioned that you're a genetic counselor now and I guess I've mentioned that. But you were you. You actually went into cytogenetics first.

Kira Dineen: 3:36

Good memory, matt. Wow, now you're just showing off.

Matt Burgess: 3:41

So what was the thought process there? Like in high school, did you think? You think, oh, I don't want to be a genetic counselor, I'd prefer to be a scientist. Or did you not know about genetic counseling, or how did that it was?

Kira Dineen: 3:53

a little of both. So I learned my mom came to me and she was like I found your career. And I'm like, okay, mom, what is it this time? And she's like genetic counselor. I'm like, well, what do they do, like what? Like what is that right? Because I'm probably I don't know 15, 16 at the time, and my mom's a social worker, so somehow through one of her clients, she kind of learned about genetic counseling. Um, so, both counseling fields, but very different kinds of counseling, and so I heard about this.

Kira Dineen: 4:21

But then I was like you know, that doesn't seem like a good career and this was my thought process at the time that's going to be every day meeting with people, that it's potentially the saddest, most traumatic day of their life, and you're meeting with them and it's just, is every hour of that day going to be so heavy? Am I going to bring that home with me? And I was like I don't, I don't want that for my life, that home with me, and I was like I don't want that for my life, that seems so heavy. But then I started learning about it more, and the more I learned about it. It really depends on what position you're in, as we've both learned of having different jobs over the years, so that's part of it. But then also, even if you are in these positions where you are processing really hard cases with people and what they're going through, they're going to be going through that experience whether you're involved or not, and you being involved, you the listener, if you're interested in counseling, you could potentially make that a much better experience for them. And those are now the cases that I remember that I feel like I'm really making a difference in someone's life and impacting them in this positive way that a genetic counselor tends to have more time to explain things and process and do that counseling part of our title.

Kira Dineen: 5:35

So I really came around to it. I did a 180 and I was like, actually I want to be seeing patients in direct patient care and I still do that part-time now. Um, but I I did come back around to it and especially after, my mom was like well, we could start having tanks of mice in the basement so you're used to handling them, because genetics are going to work with mice and you're going to work at jackson lab someday and all this stuff and um, you know it's a funny story now but it never actually happened because I was like, yeah, no, I'll go with genetic counseling, there's there's no mice involved with that. Um, it could have gone that direction. We could have had tanks of mice in the basement, which I think is is really funny, uh, that that could have been, uh, my uh experience in childhood. But yeah, I just I just found that it was, um, you know, really interesting.

Kira Dineen: 6:19

But then to go back to what you actually asked me about, cytogenetics, so I went to the University of Connecticut and there I learned there was a major in genetics, but it was specifically diagnostic genetics, and most of the kids in my class were young adults, whatever, were focused on cytogenetics.

Kira Dineen: 6:41

And there wasn't. And maybe now there is some program that has some kind of undergrad in genetic counseling, but I haven't really heard of that and I was like, well, it makes sense to major in some kind of genetics if that's what I want to go towards. Um, so that's kind of what I ended up choosing. And I'm like, well, if I get to learn how the testing works, isn't that going to be helpful when I'm actually offering the testing? Because if I've done it in the lab, I'm going to know the limitations of that testing. Why is the turnaround time so long? What are the issues? That comes up with it. So I figured it might be a good background and I enjoyed my time doing it, but I didn't plan on doing cytogenetics long-term. It was like this is a good background to launch my genetic counseling career.

Matt Burgess: 7:23

Ah, okay, that makes sense. Smart girl, you're sort of like using stepping stone.

Kira Dineen: 7:27

I try.

Matt Burgess: 7:29

So did you actually work in a lab as a cytogeneticist or no?

Kira Dineen: 7:33

Yeah, so I wasn't like salaried position, but as part of the Diagnostic Genetic Sciences Program at the University of Connecticut. At my time time it was a six-month internship. Now it's a four-month internship to actually fit better in a semester. But yeah, for six months I was full-time, you know. Whatever, it was nine to five in the lab. Um, we get the slide, you know. I mean, obviously I would rotate through different areas in the lab, but a lot of hours were spent putting the slide under the microscope. I have a little play one here under the microscope for people that can't see this and then just like looking into a microscope for many hours I would listen to like an entire audiobook in a day.

Kira Dineen: 8:14

A hunger game series or the hunger games book the first one is like eight hours, so it's like I'd listen to it a day. So yeah, it was, it was interesting and I like doing it. But I was like, yeah, I don't know if I can personally do it for that long, because you're not talking to anybody and clearly I love chatting with people. So I was like, okay, I got to do something a little bit more extroverted for me.

Matt Burgess: 8:34

Yeah, I think all most genetic counselors are so similar. I remember I did some work experience in grade 10 in a lab and I thought it was fantastic. I loved it, but I thought I think I will love it for a few weeks. I can't do this as a whole job and exactly, yeah but I mean, I'm a little bit older than you, so when I did- only a tad. I'm covering my gray hair, oh, when I?

Kira Dineen: 9:00

oh yeah, we're gonna cover mine up too. Do you got? You got some AI tools for that later?

Matt Burgess: 9:05

When I did my genetic counseling course. You know like part of the degree is learning about different molecular techniques and technology and that sort of thing. And you know I did a one-year graduate program. So now our training in Australia is a two-year degree. But I remember at the time like I finished at the end of the year I thought, okay, I've got this counselling down. I think I know you know how, you know I won't be perfect, but I think I'll know. And you know, like the different genetic technologies, I thought, okay, this all makes sense and I kind of was happy with everything except the microarray. So just to put it in context, when we talk about cytogenetics, that's really the study of chromosomes and sort of the old-fashioned one. The one that I understood really well was what we call karyotype or karyotyping.

Kira Dineen: 10:04

Good old karyotypes?

Matt Burgess: 10:06

yes, and it's literally, you know, like in the olden days, you know, people used to develop film and get out scissors and cut out the chromosomes and I could like that kind of made sense to me, I could wrap my mind around it. But, as with most technologies, they move to like a digital sort of way of looking at the chromosomes and that was called a microarray and it just took me so long to sort of understand it and wrap my mind around it.

Matt Burgess: 10:36

Were there things in your course that you sort of struggled with? Or now that you are working as a genetic counsellor, it sort of seems, really sort of straightforward, but at the time did it kind of make sense yeah, no, I think microarray it's like you, that one is more abstract, whereas with a karyotype you're literally looking at the picture of the chromosome.

Kira Dineen: 10:55

So that is so much more tangible in that way. But actually going and karyotyping and and you have basically like, if you think about, like alphabet soup and you're staring at that, that's kind of what you're looking at under the microscope and you're like the chromosomes are all kind of just, you know they're, they're fixed, they're not moving at that point because you've, you've put something on the slide so that it, you know it's kind of like freeze tag, so they're kind of just frozen in time. But looking at that under the microscope and then having to look at what's called the banding pattern it kind of looks like a barcode but having to learn that and differentiate between the chromosomes, that's kind of step number one Can you identify that's a chromosome seven? No, okay, that's a chromosome 11, whatever it is, because we've got, um, you know, 23 different types of chromosomes. You've got one through 22 and then the sex chromosomes. So I guess, yeah, 24 technically. And so looking at that, not only is it identifying which chromosome am I looking at, but also looking to see is there a piece missing or extra, or did it swap pieces with another chromosome extra, or did it swap pieces with another chromosome? So that part was so hard. Because I did what you're talking about, where it's like they developed the film and we would cut them out and you'd put it on a little piece of paper and you'd arrange them in this order and then you know, we we did some that were original film and that was kind of fun, but most of them were just photocopies and then you, but you cut it out and you physically put it on there. So I was probably the last class that did that. I graduated 2017 from that program, but I mean it was hard.

Kira Dineen: 12:33

Other kids were getting it faster than I was. I think it's kind of like when I learned to read when I was like five or six, it's like I I was a little bit more delayed than everybody else. I was like I'm I'm really trying, and then it's like once I'm over that hump, I'm like, oh, okay, now I got it. So that kind of tends to be how I learn. It's like everybody gets it and I'm still like chugging along trying to get there. I'm not quite book smart, but I'm very motivated. I will stick with something and figure it out, but you know, so I think that just actually analyzing the carry type is tough. So actually analyzing the karyotype is tough.

Kira Dineen: 13:03

So when we kind of dabbled in grad school with it, just so that genetic counseling students would have experience with it, I was like, oh, this is what I'm good at, this is what I spent two years doing, so got to have my moment there and did my own karyotype. That was fun, obviously, and you know, have it in a little frame as the nerds do. So, yeah, I would say that was one of the tougher ones. But I didn't do as much in terms of that molecular side that you were like also referencing. So mine, yeah, it was more studying chromosomes and then microarray a little bit, but only did PCR a couple times or you know things like that.

Kira Dineen: 13:35

So that is still almost a little abstract, like when you talk about with patients, like non-invasive prenatal screening and all of you know next generation sequencing, and like I haven't actually done that in the lab and I wish I had the chance. If any company wants to have me, come and teach me how to do that, I would love it. Um, I'll fly out to australia if you have a connection, matt. But um, yeah, I think sometimes it is tough when you haven't actually done something yourself to like really get it yeah, I mean thank god, they send us a report that oh yeah explains everything.

Matt Burgess: 14:06

You know like you can interpret the report. You don't actually have to do the science yourself.

Kira Dineen: 14:11

Yeah they're not sending you the raw data. It's like, hey, good luck, maybe you design your own program and are and like, do that? Yeah, it's, uh, luckily we're we're spoon-fed that part, we got to take it from there. But yeah, at least as genetic counselors we're the people in the lab, and the genetic counselors in the lab have done a lot of hard work to for us to have that report.

Matt Burgess: 14:30

So in preparation for our chat together, I went back and listened to the podcast that we did together, so really you have to tell me was it good?

Kira Dineen: 14:40

what did we talk about? It was years ago.

Matt Burgess: 14:42

It really was. Like you know, your DNA Today has over 300 episodes now and I was guest number 114.

Kira Dineen: 14:54

Wow, you were the early days. Yeah, because I knew we knew each other for years. I just couldn't pinpoint how long.

Matt Burgess: 15:00

And it was just funny listening to it because I was able to pinpoint in time when we actually spoke and it was the end of 2019. And it just was so funny because, you know, none of us had any idea what we were about to go through. It was like a couple of months before this global pandemic where the whole world kind of changed.

Kira Dineen: 15:21

But yeah, it was really good sort of going back and listening to to that um moment in time yes, our naive selves at that point, just thinking like we probably said things like see you next year at the conference and like things that like didn't happen yeah, but at the time you were a genetic counseling student, right?

Matt Burgess: 15:43

no, I don't know if this is a bit sort of naive, or, um, you know, like I just made a huge assumption about you. I thought, okay, kira has this great podcast. Um, you know, she's trying to get into genetic counseling, uh, into the genetic counseling world. She's, you know, in her um GC course and I just assumed when you finished your GC course, and I just assumed when you finished your GC course, that you would stop podcasting.

Kira Dineen: 16:07

Oh no, that would be terrible. I was like completely wrong.

Matt Burgess: 16:12

But and it's interesting because I see that you describe yourself as, or like you describe your career as a mix of genetic counselling and digital media. How do you see those two running together? You know, side by side.

Kira Dineen: 16:28

Yeah, I think it's interesting just in the sense that a lot of people, you know, when I'm talking to them they're like, oh so, like you got your degree in genetic counseling and started DNA. Today I'm like, no, it's the opposite. Like the way that I and you already knew that, but the way that I got into genetic counseling was through podcasting, because I got to interview people that were working in the field and working in genetics in some way and patient advocates and learning that whole angle and just how valued they should be and sometimes they're not, and so so many different areas and nuances within the field and perspectives. And I definitely wasn't sure how it would work after I graduated, because I was working a full-time job for four years and I was like, okay, like how am I going to keep the show running and have a full-time job where I'm also like learning right. Whenever you start a new job, especially when you're brand new in the field, you're kind of like, okay, like I have to figure this out, it takes a lot more effort. And then you kind of get to a point where you're like, okay, now I'm not coasting, but I know exactly what I have to do and it's much more straightforward at that point and you know, luckily I just ended up moving like a 10 minute walk to work. So that really helped because I could wake up a half hour before patients walk over to work, sit down, see patients go home, have dinner, and then I'd work on the show for hours and then go to bed and do it all over again.

Kira Dineen: 17:56

And then it kind of got to a point where I was like, ok, I don't know how much longer I can keep both going, especially when DNA Today started being a weekly show. We went from twice a month to every week and so I was like okay, because like we were getting a lot of people booked and a lot of sponsors were interested. I'm like I don't want to, I want it to grow, I don't, I don't want to hold it back, and that you know, in January of this year, so 2014, 2024, oh my gosh, not that long ago, 2024 this year is when I made the switch to be part-time clinic telehealth and that way I could spend a lot more time podcasting and producing some other shows and genetics and rare disease and I think, in terms of coming from the podcasting world and interviewing so many people, in some ways it really gave me, I think, a leg up in terms of patient care, because I was in my mind I wasn't maybe as nervous as I would have been, because I'm like oh, this genetic counseling session is kind of like interviewing someone on a podcast. You're kind of interviewing the patient oh, tell me about your family history, okay, this, that you're going through questions and then you're like, okay, well, now we're reverse roles.

Kira Dineen: 18:57

Now me as the genetic counselor is explaining to them okay, this is what the genetic testing is, are you interested? And when I viewed it that way, as when I was training as a student, I was like, oh, I've been doing this for years, I'm just using my skills in a different format, and so I think that was just so helpful. And now it's kind of the reverse of that, where things that I see in clinic with my patients and at conferences and all these things that I'm involved in, ends up having a good influence on the show, because it's giving I get to be a practicing genetic counselor and see what's happening in real time, and then that I can talk about that on the show. It's a very careful of HIPAA and everything, but you know it's it's helpful that I'm still, have, you know, a foot in both worlds, in that sense.

Matt Burgess: 19:46

Yeah, excellent. And I know recently you described yourself as a toddler GC.

Kira Dineen: 19:52

Yes, I did. I'm not a baby GC anymore, I'm now a toddler. It's very exciting. It's a new milestone.

Matt Burgess: 19:59

You're growing up.

Kira Dineen: 20:00

I am growing up.

Matt Burgess: 20:03

Is that how you still see yourself, or can you see sort of how you are progressing as a genetic counselor?

Kira Dineen: 20:11

Yeah, now, if I think about when I was starting, you know, like the shadowing days, and then when I was a student, you're starting to take over sessions and then, you know, walking into the room, you have the patient and you're like you don't introduce yourself as the genetic counseling student, you're like, oh, I'm the genetic counselor. There is no genetic counselor supervisor sitting in the corner that's going to correct me if I'm wrong and like that's a big like oh, okay, I'm the GC and but I think even from that was four years ago for me that you know. Now I'm like, okay, like I, I feel much more confident, I think with oh, that's the indication, yeah, I've counseled on that a lot of times. I kind of know what questions come up for patients. You know a lot of things like I know what I want to cover. But one of the reasons I'm also, you know, still it's odd when I ever put that in quotes is because there are still indications that I get that I'm like, oh, like other genetic counselors, like they may have seen this multiple times, but it's my first time and so I'm still prepping in that way and you know, I think we all do to a certain extent, because we will see rare diseases that you see it once in your career and that's it. You know, especially nano, ultra rare. But yeah, I think I think, just like anything else in life I've, I've been able to really develop a lot of those, those skills.

Kira Dineen: 21:29

Those skills I think some of my peers may be developing faster than me because they see and it depends on which friends I'm thinking of but they may see more cases that have a more, I guess, serious indication or are not as cookie cutter sessions Like I'm in the prenatal world. So for me, like a standard session would be this lovely term advanced maternal age, if someone's 35 or older at delivery, right, so that's a very like. Ok, this is like a very standard session. So I have a lot of sessions like that, whereas some of my prenatal peers their whole schedule, everything is an abnormality, a difference, you know something. So I think when you're in those kinds of settings you end up being able to develop a lot faster and you've just seen so much. You're like oh, I've seen, you know, this type of indication every month for the past four years or something. So I think, depending on where people are working, that can make a big difference of, just like how much you're able to develop as a genetic counselor.

Matt Burgess: 22:38

TractGene has designed a genetics electronic health record. Here's what it features Pedigrees, demographic data, genetics information, risk tools and sophisticated reporting, all within a clinician design workflow. It integrates with other clinical genetic software databases and hospital information systems to maintain accurate patient records. Trapgene has an experienced team who have been working in the clinical genetics industry for over 15 years. You can request a demo for free. Go to trapgenecom that's T-R-A-K-G-E-N-Ecom. When you were sort of talking before about when you were at high school and your mum was talking to you about genetic counselling and you were thinking about what that career would involve, and you were thinking about what that career would involve, you kind of alluded to or spoke about how a lot of the time it would be really hard. You'd be breaking bad news and you know, potentially it could be that you're just seeing couples or people over and over and over when it's the worst day of their life. Is that how it actually is for you?

Matt Burgess: 23:50

No Like is the reality, the perception, or the perception, the reality.

Kira Dineen: 23:55

Yeah, so I'm sure that that is the case for some of my friends that work in different areas that are patient facing. For me a lot of sessions are okay, we're going through you know, family history, medical history, and there's no like their indication for seeing me is that they're pregnant period, like there's nothing, no other reason to see me except that they're pregnant, and in our practice I just see everybody that's pregnant, unless they decline for some reason, um, but that rarely happens. So just going through because we want to make sure that they understand the genetic testing options and it makes sense for me as a genetic counselor to do that, as opposed to the nurses or other other people that have different skill sets and different information that they know so, but that's very different. Even within the us is so different, let alone the world. So I work on like the connecticut new york line, so health care here is so different than other areas like I think think a good example is in Nevada there's a handful of genetic counselors that work in clinic. So most genetic counselors out there if they're meeting with patients, those patients may have traveled hours to get to them and there is a real, immediate need to see the genetic counselor and to talk through what is going on, whereas that's not always the case for me. So I think it really is position dependent and also just geographically where you are, and I think working at a private practice is different than if I worked at a hospital, so I think that's also a big differentiator between that. But I certainly do have sessions that are still tough, that are still you know, we're going through this. But, as I mentioned before, it's just like. Those are the sessions where I feel like, oh, I'm really useful, right, like they, they really need me to be explaining all this.

Kira Dineen: 25:40

Some other patients I'm like could they have gotten away with not meeting with a genetic counselor? You know it's their fourth pregnancy. They're doing the same testing as before. Yeah, maybe not, um, but they have that opportunity if they have questions or anything, and I think they're always grateful that. It's like, oh great, I'm glad you were able to explain this again and I'm making sure I have the information, I'm making an informed decision, um. But yeah, it's interesting just how much it differs, and I wonder, with how we keep having more and more genetic counselors. Luckily, with all these wonderful programs of will, we get to a point where, in most of the country, if you're pregnant, you meet with a genetic counselor, because from my limited view and understanding, I don't think that's really happening, let alone the world, like I don't know. In Australia, for you, do most pregnant people end up seeing a genetic counselor?

Matt Burgess: 26:27

if there's not a quote, unquote, reason to or indication, I think it's quite similar and to your experience and my experience. Like I'm actually working for a private sonography clinic. I work with an obstetrician gynecologist who does invasive procedures and yeah, so we're seeing people in the private health system. So I think that there are a lot of routine pregnancies that are going through the public health care system. They may be offered the same test.

Matt Burgess: 27:04

Maybe there's not anyone to sort of explain the results or, you know, do some pre-test sort of information giving, but yeah, and do they all need to see a genetic counsellor? Maybe not. Uh, yeah, and I I guess you know, when a positive result or a high risk result is returned, most of those people are referred to genetics and most of them do see a genetic counsellor. But sort of, um, yeah, this idea of breaking bad news, like I think that when we tell people that we're genetic counsellors, the assumption is that it's a really hard job and we're doing something really hard for 40 hours of the week. And I know in my experience, you know, maybe one or two hours a week is like that, but like every job, there's lots of paperwork.

Kira Dineen: 27:56

There's lots of-. Yeah, that's always the cop-out answer. What do you like least about your job? The paperwork. It's like, yeah, of course.

Matt Burgess: 28:02

Yeah, but I think, you know, it is such a great, rewarding job where we are making a difference and we can sort of have that time to sit down and go through information in a really sort of personal way that is, you know, relevant to them and like I really enjoy that that's. You know, it's such an honour to be able to do that, I think.

Kira Dineen: 28:29

It is, and I think that's what keeps me there and I think that's why I'm not a full time podcaster is because, first of all, I worked hard at getting this degree. I want to keep using it in that way in direct patient care, but also it's just there is that gratifying feeling when you do meet with patients and their partners or support person, just having that kind of light bulb moment like teachers often have with students of like, oh, they understood it, they got it. It's the first time that someone has explained this topic to them, about a genetic test, about family history, about a risk for a certain condition, for this pregnancy or future, and they're like oh, wow, like, thank you for explaining. Ok, I get this. Now I know that this is an option. I could do PGT with IVF down the road.

Kira Dineen: 29:15

You know of just different aspects there and I think that's what kind of keeps me going with it and what keeps me engaged, and I think it's always fun just talking to new people. What's even cooler is when, now that I've been there four years, I've had repeat patients which is really fun where it's like they're coming back with that next pregnancy and it's even more exciting when their first pregnancy may have had complications and that I very much remember those patients. I may not remember the average patient where everything was good, unless we had a really cool conversation or you know they brought up something like you know Game of Thrones finished and we talked about that or something. Maybe I remember that right, but in terms of you know those patient indications and what's going on medically, like I'll remember those patients and like their their names are burned in my brain. We talked so many times and sometimes you're talking once a week and how is this going?

Kira Dineen: 30:05

And, and, and that's why we do the job right. Like that's, that's what keeps us engaged and feeling like we can really help people. And I think there is that part of our title that is counselor. But also the part that's missing in our title is that educator part. Like I really do like that aspect of teaching, and I know you've done that in different capacities and different roles you've had over the years, matt, and I think that just the blend of all of that is what's so interesting. And then you got to keep up in your field and I try, I try to keep up in all areas of genetics and then you know you can't, so it's like all right, I got to keep up with prenatal and I'll try in the other areas.

Matt Burgess: 30:43

It's so funny, there's so many things that I want to speak to you about, and it's like okay, there's 10 things in there that I want to talk about.

Kira Dineen: 30:53

Well, I start asking you a question. It's like Kira, you're the guest. Like, let's step it back, I'm not interviewing Matt.

Matt Burgess: 30:59

No, but I've got two things on my list that I absolutely must ask you about Now. Number one it's something that I've been wondering for a little while and it's like oh, next time I talk to kira, I really have to ask her about it now tell me it's something to do with courtney kardashian. She featured your podcast in like a blog or something and I just thought oh wow, kira is kicking golds, but can you tell me like the story there?

Kira Dineen: 31:28

yeah, that was wild, because I get this dm from some random person and you're like, all right, this is spam. Like cause it, it didn't even go to the podcast Instagram. Cause that I'm like, okay, maybe it's a listener, like you know, if I don't know the name yet, okay, I will get to know them. But I think it was to my personal Instagram and it was just this like random person, and they barely had any followers. So I was like, okay, this seems like junk. And they're like oh, kourtney Kardashian wants to feature you on Poosh, which is her huge blog and website. Like has a whole branding around it.

Kira Dineen: 32:01

And I was like, okay, well, what would the next steps be? I'm like, you know what, I'll just answer, because this is probably bogus, but let me just try. And they're like, yep, yep, just send it to this gmail. Like, these are the questions. Like, respond with answers. We're gonna type up a whole article. And I was like, all right, I mean, it only took me whatever half hour, an hour, to answer questions. I'm like, all right, sure, why not?

Matt Burgess: 32:22

and then it just went, so I didn't get to talk to courtney, yeah but you weren't even sure if it was real at this stage I was not sure if it was real.

Kira Dineen: 32:30

I was like this just seems fake and I'm like maybe we'll end up on some other website and just hopefully it's an okay website, like. But they were saying they worked for courtney and courtney kardashian and everything, and and then months went by, forgot about it and then all of a sudden my phone my phone is blowing up. I'm like, oh, like what's? Did I post something by accident? Did I not edit something? And I you know something must've gone out or something I don't know. And then people were like, oh my God, you're featured by Kourtney Kardashian. And I'm like oh, so I guess it was real.

Kira Dineen: 32:58

So it was. It wasn't a very glamorous like having it happen, but then once it was out there, it was it was crazy. And so my my dad's side of the family which is how I have my last name my mom changed her last name when they got married and so when I saw my dad's family they were like, oh my God, the Dineen name is now with the Kardashians and everybody was like making it about my last name and our family and not about the podcast, which was fun. But yeah, so that was kind of yeah, definitely a cool moment to be like, oh, we're featured on a Kardashian website. So didn't think you know a kardashian website. So didn't think you know genetics kardashians like didn't think that would be someone we'd collaborate with.

Matt Burgess: 33:38

so yeah, oh, that's so funny because I was sort of picturing you flying out to california and, oh I wish, see, that's what I should have said I should have said yes.

Kira Dineen: 33:47

So they flew me out first class, like the whole experience. Now it's just some random DM. So you know what the my lesson is it's worth just answering those, even when you're like, well, I mean, don't get personal information. But if you're just answering questions, that's public stuff. Yeah, why not? It could end up on Kourtney Kardashian's blog.

Matt Burgess: 34:05

So yeah, I think that's good advice. You never know where something is going to lead or you know what the opportunities are. So I think, yeah, grab them with both hands.

Kira Dineen: 34:15

Yeah, why not right? It took me an hour and it was so worth that hour. I would have spent 10 hours if I knew it was going there, right?

Matt Burgess: 34:24

Yeah, and so you mentioned teaching, and yes, that is something that I am involved with.

Kira Dineen: 34:31

I teach a course in the the bay path university I wasn't sure if you were still involved with them with, like the time difference oh, I'm so glad you've stayed and I see behind you that you have janice, one of janice berliner's books actually two of her books back there that is so funny.

Matt Burgess: 34:44

Can you see the books? I?

Kira Dineen: 34:46

can't read the title, but I recognize them because I also have them behind me too. I think they they're behind the chair, so you can't see that level. But yes, I recognize, because she came on the show to talk about both those books.

Matt Burgess: 34:58

Yeah, books.

Kira Dineen: 34:59

Promise and In Good Conscience, if I'm getting the titles right.

Matt Burgess: 35:03

Yes, they're both great books. Janice is my boss, so I have to say all good things.

Kira Dineen: 35:10

Yeah, no, love the books. It is an authentic thumbs up on my end.

Matt Burgess: 35:14

Yes, but I see that you are working with two of the students that I taught last year. They're now in their second year and you're involved in their capstone research. Can you tell me a little bit about how you sort of became involved with that?

Kira Dineen: 35:31

Yeah, so Deanna was one of my summer students and she lives in Connecticut, so that ended up working out really well, because I'm based in Connecticut and Bay Path is technically Massachusetts but it's an online program, so you've got people everywhere. You're a great example of that. You really can't get further from Massachusetts than where you are, so that you know right there. And so she was my summer student and you know she had mentioned her thesis project and I was like, oh, that's really interesting. Like I've had cases of patients where they did paternity testing while they were pregnant and you know we learned if there was non-paternity or not, so we would just talk about it. And then, you know, towards the end of the summer of her rotation, she was like, hey, would you be interested in being an advisor? I was like, wait, really, like, am I qualified for that? I don't know, but if Janice says yes, then I would love to. And then she introduced me to Taylor and so I've been working with them along with the other team members, and, yeah, it's been great because we've been able to leverage the DNA Today audience to have people fill out the survey all about of genetic counselors that have come across cases of non-paternity, and so it's been just really interesting and it's just such an interesting topic that I don't think we talk about a ton um.

Kira Dineen: 36:54

I got to interview maury povich a couple years ago around father's day and um for americans that may be a familiar name um, if you're homesick from tv, you probably watched his, his show, because he was having couples come on and they would do paternity testing. So he his catchphrase kind of you're the father, you're not the father, you're not the father, and you know he'd open the envelope and you know there'd be, you know, such a reaction. And so I got to interview him because he got to do probably more paternity testing than any other person in the world, I would imagine. And so I actually told him some facts about did you know, you've had some of the most rarest cases in the world. And he was like I had no idea about all this. I was like, yeah, like you're a name in the paternity world.

Matt Burgess: 37:35

That's so funny. I mean I was more a Ricky Lake and Jerry Springer type of boy.

Kira Dineen: 37:41

But yeah.

Matt Burgess: 37:42

I think that that's such a good example of how genetic counseling is evolving, because I think when I started out, paternity testing was just something that we didn't do. It was like, no, we do clinical medicine and paternity testing was just something that we didn't do. It was like, no, we do clinical medicine and paternity testing is not clinical medicine and it's not relevant and it's not sort of something that we do. But sometimes it is relevant and sometimes we do do that and sometimes we, through testing families, we can find out that somebody who was assumed to be the dad is not the dad.

Kira Dineen: 38:16

So I think that it is important that there is research going on about this topic and that it's important even from that medical standpoint, because at first you're like, okay, well, that that's not a medical test necessarily. But when you go through the whole family history and it's the wrong family history, that's not the biological family history. Or you've done carrier screening for the pregnant person and their partner, the presumed father of the baby. I'm still kind of struggling with what terms to use to be super inclusive. So let me know if you have feedback for me, matt. But so I think when it comes to that, it's like that's so important, because what if we did carrier screening on the wrong person and we think that there's a low reproductive chance for a condition like sickle cell or cystic fibrosis to pop up, and it's like, well, we didn't test the actual source of the sperm, right? So I think that it is so important.

Kira Dineen: 39:13

And I have to say, obviously we both talk to a ton of genetic counselors. I haven't really come across many that do the paternity testing and when it comes up with patients, yeah, I will order that and do it, whereas some places say, nope, you got to go somewhere else for that, and obviously that's not always up to the genetic counselor that might be the institution you can probably relate to being small private practice kind of thing. It's like it's much easier for me to talk to the one person that owns the private practice that is, the maternal fetal medicine doctor and say, hey, I think this is something we should do, is that cool? And he's like yep, and that's it, like there's no red tape. I don't work for these huge universities, but I don't know, I think it's, it's a genetic test. Why wouldn't we be ordering that?

Matt Burgess: 39:55

That's my viewpoint on it, yeah no-transcript question and I, you know, in the australian context, most genetics happens in the public health system and I kind of think, you know, maybe there is an argument that public health dollars shouldn't be spent helping people find out, you know, paternity issues. I don't know, maybe there's an argument. Each way, however, like like you, I work in a private clinic. Uh, you know, I've got the, the doctor who I work with, who is the medical director and owner of the company, and yeah, I mean, it's not something that I do very often, but I'm actually working on a non-invasive prenatal paternity case at the moment and I think it's a great setting.

Matt Burgess: 41:01

Like I'm there, I'm able to help, it can be really helpful for this person and I think, yeah, in the private setting, in the private sector, it's completely appropriate.

Kira Dineen: 41:11

So yeah, yeah, I agree with that. It's people that are, uh, the patients that I see. If they do opt for that and and I'm not offering this in every session, it's just when someone asks for it. So that that's just the way that you know. I do my sessions, um, and they're paying out of pocket for it. I don't know of insurance companies that cover that Um, and for anyone that is a genetic counselor or someone that may be ordering paternity testing, it's probably going to differ for each country. They're doing that is because if the father is confirmed to be the biological father, they may be paying child support and there may be legal implications behind that. So, like I make sure that the company um that I'm ordering from is that checks all those boxes, um, but it is expensive, it's, it's a couple thousand dollars yeah um, at least last time I did it.

Kira Dineen: 42:10

Yeah, it's expensive, a couple thousand american dollars.

Matt Burgess: 42:12

Yeah, I guess you you know, if you're testing people that have already been born, it's relatively cheap, but when you're doing it in a prenatal setting. It is very expensive. Thank you for clarifying that.

Kira Dineen: 42:25

Yeah, because there's probably a huge. I'm only seeing people while they're still pregnant, so yeah, and there's kind of a protocol you have to do and you have to look at people's license and like you're swabbing. And yeah, I had to read through the instructions a couple of times just because I was nervous messing it up.

Matt Burgess: 42:39

Now I feel like I've got it down pat.

Kira Dineen: 42:40

But yeah, I've done it a few times now. I'm not doing it all the time.

Matt Burgess: 42:43

Good girl. Obviously I could keep talking to you about lots of things. There was one last thing on my list that I wanted to talk to you about, so maybe we can sort of finish up there. But I know that you've had some recent experience with CRISPR and I think like the next big area of genetic counselling and you know, in the clinical genetics world is sort of gene therapy. You know, it wasn't that long ago that we were able to diagnose these conditions, but there wasn't any real treatment and that's really changing. So can you tell me about sort of your involvement with CRISPR and how that sort of fits in?

Kira Dineen: 43:23

Yeah, I wish my answer was so. I'm working on it and I have all of these research papers, but I just talk about it and learn from other people about it. But I had a really interesting interview earlier this year with Victoria Gray and she was the first person through a clinical trial to be using CRISPR to alleviate her symptoms of sickle cell, and that's episode 288 and 289 of DNA Today. Because we had such an amazing conversation, we ended up splitting it into two episodes and I think what's so interesting is that now for sickle cell, we do have this. I've kind of been learning of what language we should use around this and I think the term cure is too much because we don't know that it's really truly going to mean zero symptoms for that person. Um, victoria gray has been very open. She's been on npr, good morning america, all kinds of huge news outlets, um, and then little baby dna today on there too, so we get our name along with those huge dates. But it's just amazing how her life has completely changed. I mean she's able to travel and do all the speaking now and just live a life free of these pain crises that people with sickle cell experience, that I do not have sickle cell myself. From what I've heard from people with sickle cell, it's just absolutely excruciating pain and having that. You never know when it's going to come on. And so to hear that she went through this CRISPR curative therapy to and now her symptoms are gone is just remarkable, and that she went through this in 2019. So it's been five years now and she still doesn't have symptoms. And now it's been five years now and she still doesn't have symptoms. And now it's FDA approved and it's just it's amazing that we've gotten there, because I think about in 2012, when I started DNA Today, there was a landmark paper that came out about CRISPR and obviously we knew about it before then, but like that, that was a really big paper. And now, 12 years later, we now have an FDA approved treatment using CRISPR and it's just like, how did that happen in? 12 years later, we now have an fda approved treatment using crisper and it's just like, how did that happen in 12 years? I'm like that's wild to me. I thought I'd be like in my 50s, 60s, being like when I was in high school. We we started talking about this thing called crisper. Now we have this. I did not think it'd be before I was 30, um, so I think that has just been amazing. It.

Kira Dineen: 45:53

As amazing as it is, and as much as we should celebrate this as a huge milestone in genetics and medicine, it also is not going to work for everybody and not everybody is going to be eligible for it. So I don't want us to lose sight of all the other therapies that are so important, the other drugs that are coming to market. Um, I think that's so important. And and for people to like learn about this and be like, okay, well, is this crisper curative therapy? Is that the best for me?

Kira Dineen: 46:24

Um, and not just to like jump into things because it's. It's quite a uh, from what victoria gray explained to me it's, it's, it's not. You pop in, get it and you pop out of the hospital. It's much more involved than that. But, as you said, I think that's an area that I've really kept tried to keep a pulse on of what's happening with CRISPR, and it's just exciting to hear a bunch of other genetic diseases where we're starting to do this and have different treatments. So I think if there's something to go down a rabbit hole, it would be CRISPR.

Matt Burgess: 46:54

Excellent, I completely agree. And you know, on that lovely positive note, I think that's a perfect time to to end. You know, let's catch up every couple of years for a podcast.

Kira Dineen: 47:06

At least at least Matt, please this. This is great and you do such a great job. You make it so conversational and, you know, I think podcast listeners may not be able to fully appreciate that, because it is hard to make a conversation about genetics and science and all these tough topics very conversational and fun and engaging. So, thank you, You're an awesome host. No, thank you.

Matt Burgess: 47:31

I've had a really good time. So thanks for your time and I'll talk to you later.

Kira Dineen: 47:36

Thanks, Matt Bye.

Matt Burgess: 47:40

Bye.