February 10, 2025 • 47 mins
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.
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Matt Burgess (00:01):
Hello and welcome to Demystifying Genetics podcast
.
My name is Matt Burgess and Iam your host.
I am a genetic counsellorliving and working in Melbourne,
Australia.
This is a podcast where Iinterview people working in
genetics, such as geneticsdoctors and genetic counsellors,
and the general public who mayhave a family history or may be
(00:24):
affected with a particulargenetic condition.
On today's episode, I speakwith Kira Deneen, a genetic
counsellor based in Connecticutin the United States and also
the host of one of the world'smost successful and popular
genetics podcasts, DNA Today.
Hello, Kira, and welcome toDemystifying Genetics podcast
(00:44):
being made today.
Hello, Kira, and welcome toDemystifying Genetics.
Kira Dineen (00:48):
Hello Matt.
It is so good to hear yourbeautiful accent again.
Matt Burgess (00:52):
I've missed you I know we haven't had a chat or
haven't seen each other for awhile.
How's it going?
Kira Dineen (00:58):
Good, good, it's been a couple of years.
I think we ran into each otherat one of these conferences it
was probably on SGC a couple ofyears ago and I was like, oh my
God, it's Matt.
But yeah, so from last we likeactually talked and didn't just
email.
You moved back to Australia.
So that's exciting.
Matt Burgess (01:15):
I did.
Yes, we were in Princeton, newJersey for about four and a half
years, and it's funny actually,because this week is actually
our one year anniversary ofreturning to Australia.
Kira Dineen (01:29):
So yeah, time is going quickly.
Matt Burgess (01:33):
But let me sort of introduce you a little bit.
So I think that you are anamazing genetic counsellor.
You are the host of DNA Today,which is a great podcast that's
out there, and you've won somany awards, like the Best
Science in Medicine PodcastAward, and your podcast is in
(01:55):
the top 1% of podcasts globally.
Tell me about that.
How is that going?
How is that to be so successfuland popular?
Kira Dineen (02:07):
Yeah, I mean it's been a wild ride, because for
many years we were just gettingtrickle of downloads.
But I was like I just I lovetalking to people in genetics
and I started the show 12 yearsago when I was still in high
school.
So it was a great excuse forpeople 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 allthe different career options
(02:28):
within genetics and ended upgoing with genetic counseling,
like you did, matt, and you knowit was just.
It's been so interesting to seehow genetics has really changed
in the last 12 years.
And just our show has changed alot too.
My voice is much deeper now thanit used to be as we all age,
but it's funny listening back toanything early days.
(02:49):
I'm like, wow, wait, that's metalking 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 micthat came with the Rock Band
from PlayStation anymore.
Matt Burgess (03:03):
So yeah, that was the original setup, yep.
Kira Dineen (03:07):
Rock band, PlayStation and my microphone
stand was just the Harry Potterseries.
It was a really good height ifyou had all the books stacked up
and yeah, so I'm basically justproving myself to you in more
ways than one, that I'm a nerdin many different areas.
Matt Burgess (03:23):
Lovely.
Kira Dineen (03:24):
It's been fun.
Matt Burgess (03:25):
You started in high school.
I'm a nerd in many differentareas.
Lovely, it's been fun.
You started in high school andthen you've mentioned that
you're a genetic counselor nowand I guess I've mentioned that.
But you were you.
You actually went intocytogenetics first.
Kira Dineen (03:36):
Good memory, matt.
Wow, now you're just showingoff.
Matt Burgess (03:41):
So what was the thought process there?
Like in high school, did youthink?
You think, oh, I don't want tobe a genetic counselor, I'd
prefer to be a scientist.
Or did you not know aboutgenetic counseling, or how did
that it was?
Kira Dineen (03:53):
a little of both.
So I learned my mom came to meand she was like I found your
career.
And I'm like, okay, mom, whatis it this time?
And she's like geneticcounselor.
I'm like, well, what do they do, like what?
Like what is that right?
Because I'm probably I don'tknow 15, 16 at the time, and my
mom's a social worker, sosomehow through one of her
clients, she kind of learnedabout genetic counseling.
(04:14):
Um, so, both counseling fields,but very different kinds of
counseling, and so I heard aboutthis.
But then I was like you know,that doesn't seem like a good
career and this was my thoughtprocess at the time that's going
to be every day meeting withpeople, that it's potentially
the saddest, most traumatic dayof their life, and you're
meeting with them and it's just,is every hour of that day going
(04:37):
to be so heavy?
Am I going to bring that homewith me?
And I was like I don't, I don'twant that for my life, that
home with me, and I was like Idon't want that for my life,
that seems so heavy.
But then I started learningabout it more, and the more I
learned about it.
It really depends on whatposition you're in, as we've
both learned of having differentjobs over the years, so that's
part of it.
But then also, even if you arein these positions where you are
(05:01):
processing really hard caseswith people and what they're
going through, they're going tobe going through that experience
whether you're involved or not,and you being involved, you the
listener, if you're interestedin counseling, you could
potentially make that a muchbetter experience for them.
And those are now the casesthat I remember that I feel like
(05:23):
I'm really making a differencein someone's life and impacting
them in this positive way that agenetic counselor tends to have
more time to explain things andprocess and do that counseling
part of our title.
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 careand I still do that part-time
(05:44):
now.
Um, but I I did come backaround to it and especially
after, my mom was like well, wecould start having tanks of mice
in the basement so you're usedto handling them, because
genetics are going to work withmice and you're going to work at
jackson lab someday and allthis stuff and um, you know it's
a funny story now but it neveractually happened because I was
like, yeah, no, I'll go withgenetic counseling, there's
there's no mice involved withthat.
(06:05):
Um, it could have gone thatdirection.
We could have had tanks of micein the basement, which I think
is is really funny, uh, thatthat could have been, uh, my uh
experience in childhood.
But yeah, I just I just foundthat it was, um, you know,
really interesting.
But then to go back to what youactually asked me about,
cytogenetics, so I went to theUniversity of Connecticut and
(06:26):
there I learned there was amajor in genetics, but it was
specifically diagnostic genetics, and most of the kids in my
class were young adults,whatever, were focused on
cytogenetics.
And there wasn't.
And maybe now there is someprogram that has some kind of
(06:47):
undergrad in genetic counseling,but I haven't really heard of
that and I was like, well, itmakes sense to major in some
kind of genetics if that's whatI want to go towards.
Um, so that's kind of what Iended up choosing.
And I'm like, well, if I get tolearn how the testing works,
isn't that going to be helpfulwhen I'm actually offering the
testing?
Because if I've done it in thelab, I'm going to know the
limitations of that testing.
(07:08):
Why is the turnaround time solong?
What are the issues?
That comes up with it.
So I figured it might be a goodbackground and I enjoyed my
time doing it, but I didn't planon doing cytogenetics long-term
.
It was like this is a goodbackground to launch my genetic
counseling career.
Matt Burgess (07:23):
Ah, okay, that makes sense.
Smart girl, you're sort of likeusing stepping stone.
Kira Dineen (07:27):
I try.
Matt Burgess (07:29):
So did you actually work in a lab as a
cytogeneticist or no?
Kira Dineen (07:33):
Yeah, so I wasn't like salaried position, but as
part of the Diagnostic GeneticSciences Program at the
University of Connecticut.
At my time time it was asix-month internship.
Now it's a four-monthinternship to actually fit
better in a semester.
But yeah, for six months I wasfull-time, you know.
Whatever, it was nine to fivein the lab.
(07:55):
Um, we get the slide, you know.
I mean, obviously I wouldrotate through different areas
in the lab, but a lot of hourswere spent putting the slide
under the microscope.
I have a little play one hereunder the microscope for people
that can't see this and thenjust like looking into a
microscope for many hours Iwould listen to like an entire
audiobook in a day.
A hunger game series or thehunger games book the first one
(08:16):
is like eight hours, so it'slike I'd listen to it a day.
So yeah, it was, it wasinteresting and I like doing it.
But I was like, yeah, I don'tknow if I can personally do it
for that long, because you'renot talking to anybody and
clearly I love chatting withpeople.
So I was like, okay, I got todo something a little bit more
extroverted for me.
Matt Burgess (08:34):
Yeah, I think all most genetic counselors are so
similar.
I remember I did some workexperience in grade 10 in a lab
and I thought it was fantastic.
I loved it, but I thought Ithink I will love it for a few
weeks.
I can't do this as a whole joband exactly, yeah but I mean,
I'm a little bit older than you,so when I did- only a tad.
(08:55):
I'm covering my gray hair, oh,when I?
Kira Dineen (09:00):
oh yeah, we're gonna cover mine up too.
Do you got?
You got some AI tools for thatlater?
Matt Burgess (09:05):
When I did my genetic counseling course.
You know like part of thedegree is learning about
different molecular techniquesand technology and that sort of
thing.
And you know I did a one-yeargraduate program.
So now our training inAustralia is a two-year degree.
(09:25):
But I remember at the time likeI finished at the end of the
year I thought, okay, I've gotthis 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 thedifferent genetic technologies,
I thought, okay, this all makessense and I kind of was happy
with everything except themicroarray.
(09:47):
So just to put it in context,when we talk about cytogenetics,
that's really the study ofchromosomes and sort of the
old-fashioned one.
The one that I understoodreally 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, peopleused to develop film and get out
scissors and cut out thechromosomes and I could like
that kind of made sense to me, Icould wrap my mind around it.
But, as with most technologies,they move to like a digital
sort of way of looking at thechromosomes and that was called
(10:28):
a microarray and it just took meso long to sort of understand
it and wrap my mind around it.
Were there things in your coursethat you sort of struggled with
?
Or now that you are working asa genetic counsellor, it sort of
seems, really sort ofstraightforward, but at the time
did it kind of make sense yeah,no, I think microarray it's
(10:49):
like you, that one is moreabstract, whereas with a
karyotype you're literallylooking at the picture of the
chromosome.
Kira Dineen (10:55):
So that is so much more tangible in that way.
But actually going andkaryotyping and and you have
basically like, if you thinkabout, like alphabet soup and
you're staring at that, that'skind of what you're looking at
under the microscope and you'relike the chromosomes are all
kind of just, you know they're,they're fixed, they're not
moving at that point becauseyou've, you've put something on
the slide so that it, you knowit's kind of like freeze tag, so
(11:18):
they're kind of just frozen intime.
But looking at that under themicroscope and then having to
look at what's called thebanding pattern it kind of looks
like a barcode but having tolearn that and differentiate
between the chromosomes, that'skind of step number one Can you
identify that's a chromosomeseven?
No, okay, that's a chromosome11, whatever it is, because
(11:39):
we've got, um, you know, 23different types of chromosomes.
You've got one through 22 andthen the sex chromosomes.
So I guess, yeah, 24technically.
And so looking at that, notonly is it identifying which
chromosome am I looking at, butalso looking to see is there a
piece missing or extra, or didit swap pieces with another
(12:03):
chromosome extra, or did it swappieces with another chromosome?
So that part was so hard.
Because I did what you'retalking about, where it's like
they developed the film and wewould cut them out and you'd put
it on a little piece of paperand you'd arrange them in this
order and then you know, we wedid some that were original film
and that was kind of fun, butmost of them were just
photocopies and then you, butyou cut it out and you
(12:25):
physically put it on there.
So I was probably the lastclass that did that.
I graduated 2017 from thatprogram, but I mean it was hard.
Other kids were getting itfaster than I was.
I think it's kind of like whenI learned to read when I was
like five or six, it's like I Iwas a little bit more delayed
than everybody else.
I was like I'm I'm reallytrying, and then it's like once
I'm over that hump, I'm like, oh, okay, now I got it.
(12:46):
So that kind of tends to be howI learn.
It's like everybody gets it andI'm still like chugging along
trying to get there.
I'm not quite book smart, butI'm very motivated.
I will stick with something andfigure it out, but you know, so
I think that just actuallyanalyzing the carry type is
tough.
So actually analyzing thekaryotype is tough.
So when we kind of dabbled ingrad school with it, just so
that genetic counseling studentswould have experience with it,
(13:08):
I was like, oh, this is what I'mgood at, this is what I spent
two years doing, so got to havemy moment there and did my own
karyotype.
That was fun, obviously, andyou know, have it in a little
frame as the nerds do.
So, yeah, I would say that wasone of the tougher ones.
But I didn't do as much interms of that molecular side
that you were like alsoreferencing.
So mine, yeah, it was morestudying chromosomes and then
(13:29):
microarray a little bit, butonly did PCR a couple times or
you know things like that.
So that is still almost a littleabstract, like when you talk
about with patients, likenon-invasive prenatal screening
and all of you know nextgeneration sequencing, and like
I haven't actually done that inthe lab and I wish I had the
chance.
If any company wants to have me, come and teach me how to do
(13:50):
that, I would love it.
Um, I'll fly out to australiaif you have a connection, matt.
But um, yeah, I think sometimesit is tough when you haven't
actually done something yourselfto like really get it yeah, I
mean thank god, they send us areport that oh yeah explains
everything.
Matt Burgess (14:06):
You know like you can interpret the report.
You don't actually have to dothe 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, dothat?
Yeah, it's, uh, luckily we'rewe're spoon-fed that part, we
got to take it from there.
But yeah, at least as geneticcounselors we're the people in
the lab, and the geneticcounselors in the lab have done
a lot of hard work to for us tohave that report.
Matt Burgess (14:30):
So in preparation for our chat together, I went
back and listened to the podcastthat 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 Todayhas 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 kneweach other for years.
I just couldn't pinpoint howlong.
Matt Burgess (15:00):
And it was just funny listening to it because I
was able to pinpoint in timewhen we actually spoke and it
was the end of 2019.
And it just was so funnybecause, you know, none of us
had any idea what we were aboutto go through.
It was like a couple of monthsbefore this global pandemic
where the whole world kind ofchanged.
Kira Dineen (15:21):
But yeah, it was really good sort of going back
and listening to to that ummoment in time yes, our naive
selves at that point, justthinking like we probably said
things like see you next year atthe 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 justmade a huge assumption about you
.
I thought, okay, kira has thisgreat podcast.
Um, you know, she's trying toget into genetic counseling, uh,
into the genetic counselingworld.
She's, you know, in her um GCcourse and I just assumed when
you finished your GC course, andI just assumed when you
finished your GC course, thatyou 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, orlike you describe your career as
a mix of genetic counsellingand digital media.
How do you see those tworunning 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 yourdegree in genetic counseling and
started DNA.
Today I'm like, no, it's theopposite.
Like the way that I and youalready knew that, but the way
that I got into geneticcounseling was through
podcasting, because I got tointerview people that were
working in the field and workingin genetics in some way and
(16:49):
patient advocates and learningthat whole angle and just how
valued they should be andsometimes they're not, and so so
many different areas andnuances within the field and
perspectives.
And I definitely wasn't surehow it would work after I
graduated, because I was workinga full-time job for four years
and I was like, okay, like howam I going to keep the show
(17:10):
running and have a full-time jobwhere I'm also like learning
right.
Whenever you start a new job,especially when you're brand new
in the field, you're kind oflike, okay, like I have to
figure this out, it takes a lotmore effort.
And then you kind of get to apoint where you're like, okay,
now I'm not coasting, but I knowexactly what I have to do and
it's much more straightforwardat that point and you know,
(17:32):
luckily I just ended up movinglike a 10 minute walk to work.
So that really helped because Icould wake up a half hour
before patients walk over towork, sit down, see patients go
home, have dinner, and then I'dwork on the show for hours and
then go to bed and do it allover again.
(17:56):
And then it kind of got to apoint where I was like, ok, I
don't know how much longer I cankeep both going, especially
when DNA Today started being aweekly show.
We went from twice a month toevery week and so I was like
okay, because like we weregetting a lot of people booked
and a lot of sponsors wereinterested.
I'm like I don't want to, Iwant it to grow, I don't, I
don't want to hold it back, andthat you know, in January of
this year, so 2014, 2024, oh mygosh, not that long ago, 2024
(18:18):
this year is when I made theswitch to be part-time clinic
telehealth and that way I couldspend a lot more time podcasting
and producing some other showsand genetics and rare disease
and I think, in terms of comingfrom the podcasting world and
interviewing so many people, insome ways it really gave me, I
(18:39):
think, a leg up in terms ofpatient care, because I was in
my mind I wasn't maybe asnervous as I would have been,
because I'm like oh, thisgenetic counseling session is
kind of like interviewingsomeone on a podcast.
You're kind of interviewing thepatient oh, tell me about your
family history, okay, this, thatyou're going through questions
and then you're like, okay, well, now we're reverse roles.
Now me as the genetic counseloris explaining to them okay, this
(19:00):
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'vebeen doing this for years, I'm
just using my skills in adifferent format, and so I think
that was just so helpful.
And now it's kind of thereverse of that, where things
that I see in clinic with mypatients and at conferences and
(19:23):
all these things that I'minvolved in, ends up having a
good influence on the show,because it's giving I get to be
a practicing genetic counselorand see what's happening in real
time, and then that I can talkabout that on the show.
It's a very careful of HIPAAand everything, but you know
it's it's helpful that I'm still, have, you know, a foot in both
(19:45):
worlds, in that sense.
Matt Burgess (19:46):
Yeah, excellent.
And I know recently youdescribed yourself as a toddler
GC.
Kira Dineen (19:52):
Yes, I did.
I'm not a baby GC anymore, I'mnow 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 areprogressing as a genetic
counselor?
Kira Dineen (20:11):
Yeah, now, if I think about when I was starting,
you know, like the shadowingdays, and then when I was a
student, you're starting to takeover sessions and then, you
know, walking into the room, youhave the patient and you're
like you don't introduceyourself as the genetic
counseling student, you're like,oh, I'm the genetic counselor.
There is no genetic counselorsupervisor sitting in the corner
(20:32):
that's going to correct me ifI'm wrong and like that's a big
like oh, okay, I'm the GC andbut I think even from that was
four years ago for me that youknow.
Now I'm like, okay, like I, Ifeel much more confident, I
think with oh, that's theindication, yeah, I've counseled
on that a lot of times.
I kind of know what questionscome up for patients.
(20:54):
You know a lot of things like Iknow 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 isbecause there are still
indications that I get that I'mlike, oh, like other genetic
counselors, like they may haveseen this multiple times, but
it's my first time and so I'mstill prepping in that way and
you know, I think we all do to acertain extent, because we will
(21:15):
see rare diseases that you seeit once in your career and
that's it.
You know, especially nano,ultra rare.
But yeah, I think I think, justlike anything else in life I've
, I've been able to reallydevelop a lot of those, those
skills.
Those skills I think some of mypeers may be developing faster
than me because they see and itdepends on which friends I'm
(21:40):
thinking of but they may seemore cases that have a more, I
guess, serious indication or arenot as cookie cutter sessions
Like I'm in the prenatal world.
So for me, like a standardsession would be this lovely
term advanced maternal age, ifsomeone's 35 or older at
(22:01):
delivery, right, so that's avery like.
Ok, this is like a verystandard session.
So I have a lot of sessionslike that, whereas some of my
prenatal peers their wholeschedule, everything is an
abnormality, a difference, youknow something.
So I think when you're in thosekinds of settings you end up
being able to develop a lotfaster and you've just seen so
(22:22):
much.
You're like oh, I've seen, youknow, this type of indication
every month for the past fouryears or something.
So I think, depending on wherepeople are working, that can
make a big difference of, justlike how much you're able to
develop as a genetic counselor.
Matt Burgess (22:38):
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When you were sort of talkingbefore about when you were at
(23:25):
high school and your mum wastalking to you about genetic
counselling and you werethinking about what that career
would involve, and you werethinking about what that career
would involve, you kind ofalluded to or spoke about how a
lot of the time it would bereally hard.
You'd be breaking bad news andyou know, potentially it could
be that you're just seeingcouples or people over and over
(23:45):
and over when it's the worst dayof their life.
Is that how it actually is foryou?
No Like is the reality, theperception, 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 indifferent areas that are patient
facing.
For me a lot of sessions areokay, we're going through you
know, family history, medicalhistory, and there's no like
their indication for seeing meis that they're pregnant period,
like there's nothing, no otherreason to see me except that
(24:16):
they're pregnant, and in ourpractice I just see everybody
that's pregnant, unless theydecline for some reason, um, but
that rarely happens.
So just going through becausewe want to make sure that they
understand the genetic testingoptions and it makes sense for
me as a genetic counselor to dothat, as opposed to the nurses
or other other people that havedifferent skill sets and
different information that theyknow so, but that's very
(24:39):
different.
Even within the us is sodifferent, let alone the world.
So I work on like theconnecticut new york line, so
health care here is so differentthan other areas like I think
think a good example is inNevada there's a handful of
genetic counselors that work inclinic.
So most genetic counselors outthere if they're meeting with
(25:00):
patients, those patients mayhave traveled hours to get to
them and there is a real,immediate need to see the
genetic counselor and to talkthrough what is going on,
whereas that's not always thecase for me.
So I think it really isposition dependent and also just
geographically where you are,and I think working at a private
practice is different than if Iworked at a hospital, so I
(25:22):
think that's also a bigdifferentiator between that.
But I certainly do havesessions that are still tough,
that are still you know, we'regoing through this.
But, as I mentioned before,it's just like.
Those are the sessions where Ifeel like, oh, I'm really useful
, right, like they, they reallyneed me to be explaining all
this.
Some other patients I'm likecould they have gotten away with
(25:42):
not meeting with a geneticcounselor?
You know it's their fourthpregnancy.
They're doing the same testingas before.
Yeah, maybe not, um, but theyhave that opportunity if they
have questions or anything, andI think they're always grateful
that.
It's like, oh great, I'm gladyou were able to explain this
again and I'm making sure I havethe information, I'm making an
informed decision, um.
But yeah, it's interesting justhow much it differs, and I
(26:03):
wonder, with how we keep havingmore and more genetic counselors
.
Luckily, with all thesewonderful programs of will, we
get to a point where, in most ofthe country, if you're pregnant
, you meet with a geneticcounselor, 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 mostpregnant people end up seeing a
(26:27):
genetic counselor?
Matt Burgess (26:27):
if there's not a quote, unquote, reason to or
indication, I think it's quitesimilar and to your experience
and my experience.
Like I'm actually working for aprivate sonography clinic.
I work with an obstetriciangynecologist who does invasive
(26:48):
procedures and yeah, so we'reseeing people in the private
health system.
So I think that there are a lotof routine pregnancies that are
going through the public healthcare system.
They may be offered the sametest.
Maybe there's not anyone to sortof explain the results or, you
know, do some pre-test sort ofinformation giving, but yeah,
(27:13):
and do they all need to see agenetic counsellor?
Maybe not.
Uh, yeah, and I I guess youknow, when a positive result or
a high risk result is returned,most of those people are
referred to genetics and most ofthem do see a genetic
counsellor.
But sort of, um, yeah, thisidea of breaking bad news, like
(27:34):
I think that when we tell peoplethat we're genetic counsellors,
the assumption is that it's areally hard job and we're doing
something really hard for 40hours of the week.
And I know in my experience,you know, maybe one or two hours
a week is like that, but likeevery job, there's lots of
(27:55):
paperwork.
Kira Dineen (27:56):
There's lots of-.
Yeah, that's always the cop-outanswer.
What do you like least aboutyour 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 aremaking a difference and we can
sort of have that time to sitdown and go through information
in a really sort of personal waythat is, you know, relevant to
them and like I really enjoythat that's.
(28:24):
You know, it's such an honourto 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 fulltime podcaster is because,
first of all, I worked hard atgetting this degree.
I want to keep using it in thatway in direct patient care, but
also it's just there is thatgratifying feeling when you do
meet with patients and theirpartners or support person, just
having that kind of light bulbmoment like teachers often have
(28:52):
with students of like, oh, theyunderstood it, they got it.
It's the first time thatsomeone 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 anoption.
I could do PGT with IVF downthe road.
(29:15):
You know of just differentaspects there and I think that's
what kind of keeps me goingwith it and what keeps me
engaged, and I think it's alwaysfun just talking to new people.
What's even cooler is when, nowthat I've been there four years
, I've had repeat patients whichis really fun where it's like
they're coming back with thatnext pregnancy and it's even
more exciting when their firstpregnancy may have had
(29:37):
complications and that I verymuch remember those patients.
I may not remember the averagepatient where everything was
good, unless we had a reallycool conversation or you know
they brought up something likeyou know Game of Thrones
finished and we talked aboutthat or something.
Maybe I remember that right,but in terms of you know those
patient indications and what'sgoing on medically, like I'll
(29:57):
remember those patients and liketheir their names are burned in
my brain.
We talked so many times andsometimes you're talking once a
week and how is this going?
And, and, and that's why we dothe job right.
Like that's, that's what keepsus engaged and feeling like we
can really help people.
And I think there is that partof our title that is counselor.
(30:17):
But also the part that'smissing in our title is that
educator part.
Like I really do like thataspect of teaching, and I know
you've done that in differentcapacities and different roles
you've had over the years, matt,and I think that just the blend
of all of that is what's sointeresting.
And then you got to keep up inyour field and I try, I try to
keep up in all areas of geneticsand then you know you can't, so
(30:39):
it's like all right, I got tokeep 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, andit's like okay, there's 10
things in there that I want totalk about.
Kira Dineen (30:53):
Well, I start asking you a question.
It's like Kira, you're theguest.
Like, let's step it back, I'mnot interviewing Matt.
Matt Burgess (30:59):
No, but I've got two things on my list that I
absolutely must ask you aboutNow.
Number one it's something thatI've been wondering for a little
while and it's like oh, nexttime I talk to kira, I really
have to ask her about it nowtell me it's something to do
(31:19):
with courtney kardashian.
She featured your podcast inlike a blog or something and I
just thought oh wow, kira iskicking 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'relike, all right, this is spam.
Like cause it, it didn't evengo to the podcast Instagram.
Cause that I'm like, okay,maybe it's a listener, like you
know, if I don't know the nameyet, okay, I will get to know
them.
But I think it was to mypersonal Instagram and it was
just this like random person,and they barely had any
(31:49):
followers.
So I was like, okay, this seemslike junk.
And they're like oh, kourtneyKardashian wants to feature you
on Poosh, which is her huge blogand website.
Like has a whole brandingaround it.
And I was like, okay, well, whatwould the next steps be?
I'm like, you know what, I'lljust answer, because this is
(32:09):
probably bogus, but let me justtry.
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 wholearticle.
And I was like, all right, Imean, it only took me whatever
half hour, an hour, to answerquestions.
I'm like, all right, sure, whynot?
Matt Burgess (32:22):
and then it just went, so I didn't get to talk to
courtney, yeah but you weren'teven sure if it was real at this
stage I was not sure if it wasreal.
Kira Dineen (32:30):
I was like this just seems fake and I'm like
maybe we'll end up on some otherwebsite and just hopefully it's
an okay website, like.
But they were saying theyworked for courtney and courtney
kardashian and everything, andand then months went by, forgot
about it and then all of asudden my phone my phone is
blowing up.
I'm like, oh, like what's?
Did I post something byaccident?
Did I not edit something?
And I you know somethingmust've gone out or something I
(32:51):
don't know.
And then people were like, ohmy God, you're featured by
Kourtney Kardashian.
And I'm like oh, so I guess itwas real.
So it was.
It wasn't a very glamorous likehaving it happen, but then once
it was out there, it was it wascrazy.
And so my my dad's side of thefamily which is how I have my
last name my mom changed herlast name when they got married
(33:11):
and so when I saw my dad'sfamily they were like, oh my God
, the Dineen name is now withthe Kardashians and everybody
was like making it about my lastname and our family and not
about the podcast, which was fun.
But yeah, so that was kind ofyeah, definitely a cool moment
to be like, oh, we're featuredon a Kardashian website.
So didn't think you know akardashian website.
(33:33):
So didn't think you knowgenetics kardashians like didn't
think that would be someonewe'd collaborate with.
Matt Burgess (33:38):
so yeah, oh, that's so funny because I was
sort of picturing you flying outto california and, oh I wish,
see, that's what I should havesaid 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 lessonis it's worth just answering
those, even when you're like,well, I mean, don't get personal
information.
But if you're just answeringquestions, that's public stuff.
Yeah, why not?
It could end up on KourtneyKardashian's blog.
Matt Burgess (34:05):
So yeah, I think that's good advice.
You never know where somethingis going to lead or you know
what the opportunities are.
So I think, yeah, grab themwith both hands.
Kira Dineen (34:15):
Yeah, why not right ?
It took me an hour and it wasso worth that hour.
I would have spent 10 hours ifI knew it was going there, right
?
Matt Burgess (34:24):
Yeah, and so you mentioned teaching, and yes,
that is something that I aminvolved with.
Kira Dineen (34:31):
I teach a course in the the bay path university I
wasn't sure if you were stillinvolved with them with, like
the time difference oh, I'm soglad you've stayed and I see
behind you that you have janice,one of janice berliner's books
actually two of her books backthere 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 behindme too.
I think they they're behind thechair, so you can't see that
level.
But yes, I recognize, becauseshe 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 tosay all good things.
Kira Dineen (35:10):
Yeah, no, love the books.
It is an authentic thumbs up onmy end.
Matt Burgess (35:14):
Yes, but I see that you are working with two of
the students that I taught lastyear.
They're now in their secondyear and you're involved in
their capstone research.
Can you tell me a little bitabout 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, sothat ended up working out really
well, because I'm based inConnecticut and Bay Path is
technically Massachusetts butit's an online program, so
you've got people everywhere.
You're a great example of that.
You really can't get furtherfrom Massachusetts than where
you are, so that you know rightthere.
(35:52):
And so she was my summerstudent and you know she had
mentioned her thesis project andI was like, oh, that's really
interesting.
Like I've had cases of patientswhere they did paternity
testing while they were pregnantand you know we learned if
there was non-paternity or not,so we would just talk about it.
And then, you know, towards theend of the summer of her
(36:15):
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 Janicesays yes, then I would love to.
And then she introduced me toTaylor and so I've been working
with them along with the otherteam members, and, yeah, it's
been great because we've beenable to leverage the DNA Today
(36:36):
audience to have people fill outthe survey all about of genetic
counselors that have comeacross cases of non-paternity,
and so it's been just reallyinteresting and it's just such
an interesting topic that Idon't think we talk about a ton
um.
I got to interview maury povicha couple years ago around
(36:58):
father's day and um foramericans that may be a familiar
name um, if you're homesickfrom tv, you probably watched
his, his show, because he washaving couples come on and they
would do paternity testing.
So he his catchphrase kind ofyou're the father, you're not
the father, you're not thefather, and you know he'd open
the envelope and you knowthere'd be, you know, such a
reaction.
And so I got to interview himbecause he got to do probably
(37:21):
more paternity testing than anyother person in the world, I
would imagine.
And so I actually told him somefacts about did you know,
you've had some of the mostrarest cases in the world.
And he was like I had no ideaabout all this.
I was like, yeah, like you're aname in the paternity world.
Matt Burgess (37:35):
That's so funny.
I mean I was more a Ricky Lakeand 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 isevolving, because I think when I
started out, paternity testingwas just something that we
didn't do.
It was like, no, we do clinicalmedicine and paternity testing
was just something that wedidn't do.
It was like, no, we do clinicalmedicine and paternity testing
is not clinical medicine andit's not relevant and it's not
sort of something that we do.
But sometimes it is relevantand sometimes we do do that and
(38:08):
sometimes we, through testingfamilies, we can find out that
somebody who was assumed to bethe dad is not the dad.
Kira Dineen (38:16):
So I think that it is important that there is
research going on about thistopic and that it's important
even from that medicalstandpoint, because at first
you're like, okay, well, thatthat's not a medical test
necessarily.
But when you go through thewhole family history and it's
the wrong family history, that'snot the biological family
(38:39):
history.
Or you've done carrierscreening for the pregnant
person and their partner, thepresumed father of the baby.
I'm still kind of strugglingwith what terms to use to be
super inclusive.
So let me know if you havefeedback for me, matt.
But so I think when it comes tothat, it's like that's so
important, because what if wedid carrier screening on the
wrong person and we think thatthere's a low reproductive
(39:01):
chance for a condition likesickle 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 soimportant.
And I have to say, obviously weboth talk to a ton of genetic
counselors.
I haven't really come acrossmany that do the paternity
testing and when it comes upwith patients, yeah, I will
(39:25):
order that and do it, whereassome places say, nope, you got
to go somewhere else for that,and obviously that's not always
up to the genetic counselor thatmight be the institution you
can probably relate to beingsmall private practice kind of
thing.
It's like it's much easier forme to talk to the one person
that owns the private practicethat is, the maternal fetal
medicine doctor and say, hey, Ithink this is something we
should do, is that cool?
(39:45):
And he's like yep, and that'sit, like there's no red tape.
I don't work for these hugeuniversities, but I don't know,
I think it's, it's a genetictest.
Why wouldn't we be orderingthat?
Matt Burgess (39:55):
That's my viewpoint on it, yeah
no-transcript question and I,you know, in the australian
(40:17):
context, most genetics happensin the public health system and
I kind of think, you know, maybethere is an argument that
public health dollars shouldn'tbe spent helping people find out
, you know, paternity issues.
I don't know, maybe there's anargument.
Each way, however, like likeyou, I work in a private clinic.
(40:41):
Uh, you know, I've got the, thedoctor who I work with, who is
the medical director and ownerof the company, and yeah, I mean
, it's not something that I dovery often, but I'm actually
working on a non-invasiveprenatal paternity case at the
moment and I think it's a greatsetting.
Like I'm there, I'm able to help, it can be really helpful for
(41:05):
this person and I think, yeah,in the private setting, in the
private sector, it's completelyappropriate.
Kira Dineen (41:11):
So yeah, yeah, I agree with that.
It's people that are, uh, thepatients that I see.
If they do opt for that and andI'm not offering this in every
session, it's just when someoneasks for it.
So that that's just the waythat you know.
I do my sessions, um, andthey're paying out of pocket for
it.
I don't know of insurancecompanies that cover that Um,
(41:32):
and for anyone that is a geneticcounselor or someone that may
be ordering paternity testing,it's probably going to differ
for each country.
They're doing that is becauseif the father is confirmed to be
(41:54):
the biological father, they maybe paying child support and
there may be legal implicationsbehind that.
So, like I make sure that thecompany um that I'm ordering
from is that checks all thoseboxes, um, but it is expensive,
it's, it's a couple thousanddollars yeah um, at least last
time I did it.
Yeah, it's expensive, a couplethousand american dollars.
Matt Burgess (42:12):
Yeah, I guess you you know, if you're testing
people that have already beenborn, it's relatively cheap, but
when you're doing it in aprenatal 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 whilethey're still pregnant, so yeah,
and there's kind of a protocolyou have to do and you have to
look at people's license andlike you're swabbing.
And yeah, I had to read throughthe instructions a couple of
times just because I was nervousmessing 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 talkingto you about lots of things.
There was one last thing on mylist that I wanted to talk to
you about, so maybe we can sortof finish up there.
But I know that you've had somerecent experience with CRISPR
and I think like the next bigarea of genetic counselling and
(43:04):
you know, in the clinicalgenetics world is sort of gene
therapy.
You know, it wasn't that longago that we were able to
diagnose these conditions, butthere wasn't any real treatment
and that's really changing.
So can you tell me about sortof 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 haveall of these research papers,
but I just talk about it andlearn from other people about it
.
But I had a really interestinginterview earlier this year with
Victoria Gray and she was thefirst person through a clinical
trial to be using CRISPR toalleviate her symptoms of sickle
(43:47):
cell, and that's episode 288and 289 of DNA Today.
Because we had such an amazingconversation, we ended up
splitting it into two episodesand I think what's so
interesting is that now forsickle cell, we do have this.
I've kind of been learning ofwhat language we should use
around this and I think the termcure is too much because we
(44:15):
don't know that it's reallytruly going to mean zero
symptoms for that person.
Um, victoria gray has been veryopen.
She's been on npr, good morningamerica, all kinds of huge news
outlets, um, and then littlebaby dna today on there too, so
we get our name along with thosehuge dates.
But it's just amazing how herlife has completely changed.
I mean she's able to travel anddo all the speaking now and
(44:35):
just live a life free of thesepain crises that people with
sickle cell experience, that Ido not have sickle cell myself.
From what I've heard frompeople with sickle cell, it's
just absolutely excruciatingpain and having that.
You never know when it's goingto come on.
And so to hear that she wentthrough this CRISPR curative
(44:59):
therapy to and now her symptomsare gone is just remarkable, and
that she went through this in2019.
So it's been five years now andshe still doesn't have symptoms
.
And now it's been five yearsnow and she still doesn't have
symptoms.
And now it's FDA approved andit's just it's amazing that
we've gotten there, because Ithink about in 2012, when I
(45:21):
started DNA Today, there was alandmark paper that came out
about CRISPR and obviously weknew about it before then, but
like that, that was a really bigpaper.
And now, 12 years later, we nowhave an FDA approved treatment
using CRISPR and it's just like,how did that happen in?
12 years later, we now have anfda approved treatment using
crisper and it's just like, howdid 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
(45:43):
high school.
We we started talking aboutthis thing called crisper.
Now we have this.
I did not think it'd be beforeI was 30, um, so I think that
has just been amazing.
It.
As amazing as it is, and as muchas we should celebrate this as
a huge milestone in genetics andmedicine, it also is not going
(46:03):
to work for everybody and noteverybody is going to be
eligible for it.
So I don't want us to losesight of all the other therapies
that are so important, theother drugs that are coming to
market.
Um, I think that's so important.
And and for people to likelearn about this and be like,
okay, well, is this crispercurative therapy?
Is that the best for me?
(46:24):
Um, and not just to like jumpinto things because it's.
It's quite a uh, from whatvictoria gray explained to me
it's, it's, it's not.
You pop in, get it and you popout of the hospital.
It's much more involved thanthat.
But, as you said, I thinkthat's an area that I've really
kept tried to keep a pulse on ofwhat's happening with CRISPR,
and it's just exciting to hear abunch of other genetic diseases
(46:46):
where we're starting to do thisand have different treatments.
So I think if there's somethingto go down a rabbit hole, it
would be CRISPR.
Matt Burgess (46:54):
Excellent, I completely agree.
And you know, on that lovelypositive note, I think that's a
perfect time to to end.
You know, let's catch up everycouple of years for a podcast.
Kira Dineen (47:06):
At least at least Matt, please this.
This is great and you do such agreat job.
You make it so conversationaland, you know, I think podcast
listeners may not be able tofully appreciate that, because
it is hard to make aconversation about genetics and
science and all these toughtopics very conversational and
fun and engaging.
So, thank you, You're anawesome host.
(47:27):
No, thank you.
Matt Burgess (47:31):
I've had a really good time.
So thanks for your time andI'll talk to you later.
Kira Dineen (47:36):
Thanks, Matt Bye.
Matt Burgess (47:40):
Bye.
Hello and welcome to Demystifying Genetics podcast
.
My name is Matt Burgess and Iam your host.
I am a genetic counsellorliving and working in Melbourne,
Australia.
This is a podcast where Iinterview people working in
genetics, such as geneticsdoctors and genetic counsellors,
and the general public who mayhave a family history or may be
(00:24):
affected with a particulargenetic condition.
On today's episode, I speakwith Kira Deneen, a genetic
counsellor based in Connecticutin the United States and also
the host of one of the world'smost successful and popular
genetics podcasts, DNA Today.
Hello, Kira, and welcome toDemystifying Genetics podcast
(00:44):
being made today.
Hello, Kira, and welcome toDemystifying Genetics.
Kira Dineen (00:48):
Hello Matt.
It is so good to hear yourbeautiful accent again.
Matt Burgess (00:52):
I've missed you I know we haven't had a chat or
haven't seen each other for awhile.
How's it going?
Kira Dineen (00:58):
Good, good, it's been a couple of years.
I think we ran into each otherat one of these conferences it
was probably on SGC a couple ofyears ago and I was like, oh my
God, it's Matt.
But yeah, so from last we likeactually talked and didn't just
email.
You moved back to Australia.
So that's exciting.
Matt Burgess (01:15):
I did.
Yes, we were in Princeton, newJersey for about four and a half
years, and it's funny actually,because this week is actually
our one year anniversary ofreturning to Australia.
Kira Dineen (01:29):
So yeah, time is going quickly.
Matt Burgess (01:33):
But let me sort of introduce you a little bit.
So I think that you are anamazing genetic counsellor.
You are the host of DNA Today,which is a great podcast that's
out there, and you've won somany awards, like the Best
Science in Medicine PodcastAward, and your podcast is in
(01:55):
the top 1% of podcasts globally.
Tell me about that.
How is that going?
How is that to be so successfuland popular?
Kira Dineen (02:07):
Yeah, I mean it's been a wild ride, because for
many years we were just gettingtrickle of downloads.
But I was like I just I lovetalking to people in genetics
and I started the show 12 yearsago when I was still in high
school.
So it was a great excuse forpeople 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 allthe different career options
(02:28):
within genetics and ended upgoing with genetic counseling,
like you did, matt, and you knowit was just.
It's been so interesting to seehow genetics has really changed
in the last 12 years.
And just our show has changed alot too.
My voice is much deeper now thanit used to be as we all age,
but it's funny listening back toanything early days.
(02:49):
I'm like, wow, wait, that's metalking 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 micthat came with the Rock Band
from PlayStation anymore.
Matt Burgess (03:03):
So yeah, that was the original setup, yep.
Kira Dineen (03:07):
Rock band, PlayStation and my microphone
stand was just the Harry Potterseries.
It was a really good height ifyou had all the books stacked up
and yeah, so I'm basically justproving myself to you in more
ways than one, that I'm a nerdin many different areas.
Matt Burgess (03:23):
Lovely.
Kira Dineen (03:24):
It's been fun.
Matt Burgess (03:25):
You started in high school.
I'm a nerd in many differentareas.
Lovely, it's been fun.
You started in high school andthen you've mentioned that
you're a genetic counselor nowand I guess I've mentioned that.
But you were you.
You actually went intocytogenetics first.
Kira Dineen (03:36):
Good memory, matt.
Wow, now you're just showingoff.
Matt Burgess (03:41):
So what was the thought process there?
Like in high school, did youthink?
You think, oh, I don't want tobe a genetic counselor, I'd
prefer to be a scientist.
Or did you not know aboutgenetic counseling, or how did
that it was?
Kira Dineen (03:53):
a little of both.
So I learned my mom came to meand she was like I found your
career.
And I'm like, okay, mom, whatis it this time?
And she's like geneticcounselor.
I'm like, well, what do they do, like what?
Like what is that right?
Because I'm probably I don'tknow 15, 16 at the time, and my
mom's a social worker, sosomehow through one of her
clients, she kind of learnedabout genetic counseling.
(04:14):
Um, so, both counseling fields,but very different kinds of
counseling, and so I heard aboutthis.
But then I was like you know,that doesn't seem like a good
career and this was my thoughtprocess at the time that's going
to be every day meeting withpeople, that it's potentially
the saddest, most traumatic dayof their life, and you're
meeting with them and it's just,is every hour of that day going
(04:37):
to be so heavy?
Am I going to bring that homewith me?
And I was like I don't, I don'twant that for my life, that
home with me, and I was like Idon't want that for my life,
that seems so heavy.
But then I started learningabout it more, and the more I
learned about it.
It really depends on whatposition you're in, as we've
both learned of having differentjobs over the years, so that's
part of it.
But then also, even if you arein these positions where you are
(05:01):
processing really hard caseswith people and what they're
going through, they're going tobe going through that experience
whether you're involved or not,and you being involved, you the
listener, if you're interestedin counseling, you could
potentially make that a muchbetter experience for them.
And those are now the casesthat I remember that I feel like
(05:23):
I'm really making a differencein someone's life and impacting
them in this positive way that agenetic counselor tends to have
more time to explain things andprocess and do that counseling
part of our title.
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 careand I still do that part-time
(05:44):
now.
Um, but I I did come backaround to it and especially
after, my mom was like well, wecould start having tanks of mice
in the basement so you're usedto handling them, because
genetics are going to work withmice and you're going to work at
jackson lab someday and allthis stuff and um, you know it's
a funny story now but it neveractually happened because I was
like, yeah, no, I'll go withgenetic counseling, there's
there's no mice involved withthat.
(06:05):
Um, it could have gone thatdirection.
We could have had tanks of micein the basement, which I think
is is really funny, uh, thatthat could have been, uh, my uh
experience in childhood.
But yeah, I just I just foundthat it was, um, you know,
really interesting.
But then to go back to what youactually asked me about,
cytogenetics, so I went to theUniversity of Connecticut and
(06:26):
there I learned there was amajor in genetics, but it was
specifically diagnostic genetics, and most of the kids in my
class were young adults,whatever, were focused on
cytogenetics.
And there wasn't.
And maybe now there is someprogram that has some kind of
(06:47):
undergrad in genetic counseling,but I haven't really heard of
that and I was like, well, itmakes sense to major in some
kind of genetics if that's whatI want to go towards.
Um, so that's kind of what Iended up choosing.
And I'm like, well, if I get tolearn how the testing works,
isn't that going to be helpfulwhen I'm actually offering the
testing?
Because if I've done it in thelab, I'm going to know the
limitations of that testing.
(07:08):
Why is the turnaround time solong?
What are the issues?
That comes up with it.
So I figured it might be a goodbackground and I enjoyed my
time doing it, but I didn't planon doing cytogenetics long-term
.
It was like this is a goodbackground to launch my genetic
counseling career.
Matt Burgess (07:23):
Ah, okay, that makes sense.
Smart girl, you're sort of likeusing stepping stone.
Kira Dineen (07:27):
I try.
Matt Burgess (07:29):
So did you actually work in a lab as a
cytogeneticist or no?
Kira Dineen (07:33):
Yeah, so I wasn't like salaried position, but as
part of the Diagnostic GeneticSciences Program at the
University of Connecticut.
At my time time it was asix-month internship.
Now it's a four-monthinternship to actually fit
better in a semester.
But yeah, for six months I wasfull-time, you know.
Whatever, it was nine to fivein the lab.
(07:55):
Um, we get the slide, you know.
I mean, obviously I wouldrotate through different areas
in the lab, but a lot of hourswere spent putting the slide
under the microscope.
I have a little play one hereunder the microscope for people
that can't see this and thenjust like looking into a
microscope for many hours Iwould listen to like an entire
audiobook in a day.
A hunger game series or thehunger games book the first one
(08:16):
is like eight hours, so it'slike I'd listen to it a day.
So yeah, it was, it wasinteresting and I like doing it.
But I was like, yeah, I don'tknow if I can personally do it
for that long, because you'renot talking to anybody and
clearly I love chatting withpeople.
So I was like, okay, I got todo something a little bit more
extroverted for me.
Matt Burgess (08:34):
Yeah, I think all most genetic counselors are so
similar.
I remember I did some workexperience in grade 10 in a lab
and I thought it was fantastic.
I loved it, but I thought Ithink I will love it for a few
weeks.
I can't do this as a whole joband exactly, yeah but I mean,
I'm a little bit older than you,so when I did- only a tad.
(08:55):
I'm covering my gray hair, oh,when I?
Kira Dineen (09:00):
oh yeah, we're gonna cover mine up too.
Do you got?
You got some AI tools for thatlater?
Matt Burgess (09:05):
When I did my genetic counseling course.
You know like part of thedegree is learning about
different molecular techniquesand technology and that sort of
thing.
And you know I did a one-yeargraduate program.
So now our training inAustralia is a two-year degree.
(09:25):
But I remember at the time likeI finished at the end of the
year I thought, okay, I've gotthis 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 thedifferent genetic technologies,
I thought, okay, this all makessense and I kind of was happy
with everything except themicroarray.
(09:47):
So just to put it in context,when we talk about cytogenetics,
that's really the study ofchromosomes and sort of the
old-fashioned one.
The one that I understoodreally 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, peopleused to develop film and get out
scissors and cut out thechromosomes and I could like
that kind of made sense to me, Icould wrap my mind around it.
But, as with most technologies,they move to like a digital
sort of way of looking at thechromosomes and that was called
(10:28):
a microarray and it just took meso long to sort of understand
it and wrap my mind around it.
Were there things in your coursethat you sort of struggled with
?
Or now that you are working asa genetic counsellor, it sort of
seems, really sort ofstraightforward, but at the time
did it kind of make sense yeah,no, I think microarray it's
(10:49):
like you, that one is moreabstract, whereas with a
karyotype you're literallylooking at the picture of the
chromosome.
Kira Dineen (10:55):
So that is so much more tangible in that way.
But actually going andkaryotyping and and you have
basically like, if you thinkabout, like alphabet soup and
you're staring at that, that'skind of what you're looking at
under the microscope and you'relike the chromosomes are all
kind of just, you know they're,they're fixed, they're not
moving at that point becauseyou've, you've put something on
the slide so that it, you knowit's kind of like freeze tag, so
(11:18):
they're kind of just frozen intime.
But looking at that under themicroscope and then having to
look at what's called thebanding pattern it kind of looks
like a barcode but having tolearn that and differentiate
between the chromosomes, that'skind of step number one Can you
identify that's a chromosomeseven?
No, okay, that's a chromosome11, whatever it is, because
(11:39):
we've got, um, you know, 23different types of chromosomes.
You've got one through 22 andthen the sex chromosomes.
So I guess, yeah, 24technically.
And so looking at that, notonly is it identifying which
chromosome am I looking at, butalso looking to see is there a
piece missing or extra, or didit swap pieces with another
(12:03):
chromosome extra, or did it swappieces with another chromosome?
So that part was so hard.
Because I did what you'retalking about, where it's like
they developed the film and wewould cut them out and you'd put
it on a little piece of paperand you'd arrange them in this
order and then you know, we wedid some that were original film
and that was kind of fun, butmost of them were just
photocopies and then you, butyou cut it out and you
(12:25):
physically put it on there.
So I was probably the lastclass that did that.
I graduated 2017 from thatprogram, but I mean it was hard.
Other kids were getting itfaster than I was.
I think it's kind of like whenI learned to read when I was
like five or six, it's like I Iwas a little bit more delayed
than everybody else.
I was like I'm I'm reallytrying, and then it's like once
I'm over that hump, I'm like, oh, okay, now I got it.
(12:46):
So that kind of tends to be howI learn.
It's like everybody gets it andI'm still like chugging along
trying to get there.
I'm not quite book smart, butI'm very motivated.
I will stick with something andfigure it out, but you know, so
I think that just actuallyanalyzing the carry type is
tough.
So actually analyzing thekaryotype is tough.
So when we kind of dabbled ingrad school with it, just so
that genetic counseling studentswould have experience with it,
(13:08):
I was like, oh, this is what I'mgood at, this is what I spent
two years doing, so got to havemy moment there and did my own
karyotype.
That was fun, obviously, andyou know, have it in a little
frame as the nerds do.
So, yeah, I would say that wasone of the tougher ones.
But I didn't do as much interms of that molecular side
that you were like alsoreferencing.
So mine, yeah, it was morestudying chromosomes and then
(13:29):
microarray a little bit, butonly did PCR a couple times or
you know things like that.
So that is still almost a littleabstract, like when you talk
about with patients, likenon-invasive prenatal screening
and all of you know nextgeneration sequencing, and like
I haven't actually done that inthe lab and I wish I had the
chance.
If any company wants to have me, come and teach me how to do
(13:50):
that, I would love it.
Um, I'll fly out to australiaif you have a connection, matt.
But um, yeah, I think sometimesit is tough when you haven't
actually done something yourselfto like really get it yeah, I
mean thank god, they send us areport that oh yeah explains
everything.
Matt Burgess (14:06):
You know like you can interpret the report.
You don't actually have to dothe 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, dothat?
Yeah, it's, uh, luckily we'rewe're spoon-fed that part, we
got to take it from there.
But yeah, at least as geneticcounselors we're the people in
the lab, and the geneticcounselors in the lab have done
a lot of hard work to for us tohave that report.
Matt Burgess (14:30):
So in preparation for our chat together, I went
back and listened to the podcastthat 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 Todayhas 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 kneweach other for years.
I just couldn't pinpoint howlong.
Matt Burgess (15:00):
And it was just funny listening to it because I
was able to pinpoint in timewhen we actually spoke and it
was the end of 2019.
And it just was so funnybecause, you know, none of us
had any idea what we were aboutto go through.
It was like a couple of monthsbefore this global pandemic
where the whole world kind ofchanged.
Kira Dineen (15:21):
But yeah, it was really good sort of going back
and listening to to that ummoment in time yes, our naive
selves at that point, justthinking like we probably said
things like see you next year atthe 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 justmade a huge assumption about you
.
I thought, okay, kira has thisgreat podcast.
Um, you know, she's trying toget into genetic counseling, uh,
into the genetic counselingworld.
She's, you know, in her um GCcourse and I just assumed when
you finished your GC course, andI just assumed when you
finished your GC course, thatyou 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, orlike you describe your career as
a mix of genetic counsellingand digital media.
How do you see those tworunning 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 yourdegree in genetic counseling and
started DNA.
Today I'm like, no, it's theopposite.
Like the way that I and youalready knew that, but the way
that I got into geneticcounseling was through
podcasting, because I got tointerview people that were
working in the field and workingin genetics in some way and
(16:49):
patient advocates and learningthat whole angle and just how
valued they should be andsometimes they're not, and so so
many different areas andnuances within the field and
perspectives.
And I definitely wasn't surehow it would work after I
graduated, because I was workinga full-time job for four years
and I was like, okay, like howam I going to keep the show
(17:10):
running and have a full-time jobwhere I'm also like learning
right.
Whenever you start a new job,especially when you're brand new
in the field, you're kind oflike, okay, like I have to
figure this out, it takes a lotmore effort.
And then you kind of get to apoint where you're like, okay,
now I'm not coasting, but I knowexactly what I have to do and
it's much more straightforwardat that point and you know,
(17:32):
luckily I just ended up movinglike a 10 minute walk to work.
So that really helped because Icould wake up a half hour
before patients walk over towork, sit down, see patients go
home, have dinner, and then I'dwork on the show for hours and
then go to bed and do it allover again.
(17:56):
And then it kind of got to apoint where I was like, ok, I
don't know how much longer I cankeep both going, especially
when DNA Today started being aweekly show.
We went from twice a month toevery week and so I was like
okay, because like we weregetting a lot of people booked
and a lot of sponsors wereinterested.
I'm like I don't want to, Iwant it to grow, I don't, I
don't want to hold it back, andthat you know, in January of
this year, so 2014, 2024, oh mygosh, not that long ago, 2024
(18:18):
this year is when I made theswitch to be part-time clinic
telehealth and that way I couldspend a lot more time podcasting
and producing some other showsand genetics and rare disease
and I think, in terms of comingfrom the podcasting world and
interviewing so many people, insome ways it really gave me, I
(18:39):
think, a leg up in terms ofpatient care, because I was in
my mind I wasn't maybe asnervous as I would have been,
because I'm like oh, thisgenetic counseling session is
kind of like interviewingsomeone on a podcast.
You're kind of interviewing thepatient oh, tell me about your
family history, okay, this, thatyou're going through questions
and then you're like, okay, well, now we're reverse roles.
Now me as the genetic counseloris explaining to them okay, this
(19:00):
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'vebeen doing this for years, I'm
just using my skills in adifferent format, and so I think
that was just so helpful.
And now it's kind of thereverse of that, where things
that I see in clinic with mypatients and at conferences and
(19:23):
all these things that I'minvolved in, ends up having a
good influence on the show,because it's giving I get to be
a practicing genetic counselorand see what's happening in real
time, and then that I can talkabout that on the show.
It's a very careful of HIPAAand everything, but you know
it's it's helpful that I'm still, have, you know, a foot in both
(19:45):
worlds, in that sense.
Matt Burgess (19:46):
Yeah, excellent.
And I know recently youdescribed yourself as a toddler
GC.
Kira Dineen (19:52):
Yes, I did.
I'm not a baby GC anymore, I'mnow 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 areprogressing as a genetic
counselor?
Kira Dineen (20:11):
Yeah, now, if I think about when I was starting,
you know, like the shadowingdays, and then when I was a
student, you're starting to takeover sessions and then, you
know, walking into the room, youhave the patient and you're
like you don't introduceyourself as the genetic
counseling student, you're like,oh, I'm the genetic counselor.
There is no genetic counselorsupervisor sitting in the corner
(20:32):
that's going to correct me ifI'm wrong and like that's a big
like oh, okay, I'm the GC andbut I think even from that was
four years ago for me that youknow.
Now I'm like, okay, like I, Ifeel much more confident, I
think with oh, that's theindication, yeah, I've counseled
on that a lot of times.
I kind of know what questionscome up for patients.
(20:54):
You know a lot of things like Iknow 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 isbecause there are still
indications that I get that I'mlike, oh, like other genetic
counselors, like they may haveseen this multiple times, but
it's my first time and so I'mstill prepping in that way and
you know, I think we all do to acertain extent, because we will
(21:15):
see rare diseases that you seeit once in your career and
that's it.
You know, especially nano,ultra rare.
But yeah, I think I think, justlike anything else in life I've
, I've been able to reallydevelop a lot of those, those
skills.
Those skills I think some of mypeers may be developing faster
than me because they see and itdepends on which friends I'm
(21:40):
thinking of but they may seemore cases that have a more, I
guess, serious indication or arenot as cookie cutter sessions
Like I'm in the prenatal world.
So for me, like a standardsession would be this lovely
term advanced maternal age, ifsomeone's 35 or older at
(22:01):
delivery, right, so that's avery like.
Ok, this is like a verystandard session.
So I have a lot of sessionslike that, whereas some of my
prenatal peers their wholeschedule, everything is an
abnormality, a difference, youknow something.
So I think when you're in thosekinds of settings you end up
being able to develop a lotfaster and you've just seen so
(22:22):
much.
You're like oh, I've seen, youknow, this type of indication
every month for the past fouryears or something.
So I think, depending on wherepeople are working, that can
make a big difference of, justlike how much you're able to
develop as a genetic counselor.
Matt Burgess (22:38):
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When you were sort of talkingbefore about when you were at
(23:25):
high school and your mum wastalking to you about genetic
counselling and you werethinking about what that career
would involve, and you werethinking about what that career
would involve, you kind ofalluded to or spoke about how a
lot of the time it would bereally hard.
You'd be breaking bad news andyou know, potentially it could
be that you're just seeingcouples or people over and over
(23:45):
and over when it's the worst dayof their life.
Is that how it actually is foryou?
No Like is the reality, theperception, 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 indifferent areas that are patient
facing.
For me a lot of sessions areokay, we're going through you
know, family history, medicalhistory, and there's no like
their indication for seeing meis that they're pregnant period,
like there's nothing, no otherreason to see me except that
(24:16):
they're pregnant, and in ourpractice I just see everybody
that's pregnant, unless theydecline for some reason, um, but
that rarely happens.
So just going through becausewe want to make sure that they
understand the genetic testingoptions and it makes sense for
me as a genetic counselor to dothat, as opposed to the nurses
or other other people that havedifferent skill sets and
different information that theyknow so, but that's very
(24:39):
different.
Even within the us is sodifferent, let alone the world.
So I work on like theconnecticut new york line, so
health care here is so differentthan other areas like I think
think a good example is inNevada there's a handful of
genetic counselors that work inclinic.
So most genetic counselors outthere if they're meeting with
(25:00):
patients, those patients mayhave traveled hours to get to
them and there is a real,immediate need to see the
genetic counselor and to talkthrough what is going on,
whereas that's not always thecase for me.
So I think it really isposition dependent and also just
geographically where you are,and I think working at a private
practice is different than if Iworked at a hospital, so I
(25:22):
think that's also a bigdifferentiator between that.
But I certainly do havesessions that are still tough,
that are still you know, we'regoing through this.
But, as I mentioned before,it's just like.
Those are the sessions where Ifeel like, oh, I'm really useful
, right, like they, they reallyneed me to be explaining all
this.
Some other patients I'm likecould they have gotten away with
(25:42):
not meeting with a geneticcounselor?
You know it's their fourthpregnancy.
They're doing the same testingas before.
Yeah, maybe not, um, but theyhave that opportunity if they
have questions or anything, andI think they're always grateful
that.
It's like, oh great, I'm gladyou were able to explain this
again and I'm making sure I havethe information, I'm making an
informed decision, um.
But yeah, it's interesting justhow much it differs, and I
(26:03):
wonder, with how we keep havingmore and more genetic counselors
.
Luckily, with all thesewonderful programs of will, we
get to a point where, in most ofthe country, if you're pregnant
, you meet with a geneticcounselor, 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 mostpregnant people end up seeing a
(26:27):
genetic counselor?
Matt Burgess (26:27):
if there's not a quote, unquote, reason to or
indication, I think it's quitesimilar and to your experience
and my experience.
Like I'm actually working for aprivate sonography clinic.
I work with an obstetriciangynecologist who does invasive
(26:48):
procedures and yeah, so we'reseeing people in the private
health system.
So I think that there are a lotof routine pregnancies that are
going through the public healthcare system.
They may be offered the sametest.
Maybe there's not anyone to sortof explain the results or, you
know, do some pre-test sort ofinformation giving, but yeah,
(27:13):
and do they all need to see agenetic counsellor?
Maybe not.
Uh, yeah, and I I guess youknow, when a positive result or
a high risk result is returned,most of those people are
referred to genetics and most ofthem do see a genetic
counsellor.
But sort of, um, yeah, thisidea of breaking bad news, like
(27:34):
I think that when we tell peoplethat we're genetic counsellors,
the assumption is that it's areally hard job and we're doing
something really hard for 40hours of the week.
And I know in my experience,you know, maybe one or two hours
a week is like that, but likeevery job, there's lots of
(27:55):
paperwork.
Kira Dineen (27:56):
There's lots of-.
Yeah, that's always the cop-outanswer.
What do you like least aboutyour 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 aremaking a difference and we can
sort of have that time to sitdown and go through information
in a really sort of personal waythat is, you know, relevant to
them and like I really enjoythat that's.
(28:24):
You know, it's such an honourto 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 fulltime podcaster is because,
first of all, I worked hard atgetting this degree.
I want to keep using it in thatway in direct patient care, but
also it's just there is thatgratifying feeling when you do
meet with patients and theirpartners or support person, just
having that kind of light bulbmoment like teachers often have
(28:52):
with students of like, oh, theyunderstood it, they got it.
It's the first time thatsomeone 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 anoption.
I could do PGT with IVF downthe road.
(29:15):
You know of just differentaspects there and I think that's
what kind of keeps me goingwith it and what keeps me
engaged, and I think it's alwaysfun just talking to new people.
What's even cooler is when, nowthat I've been there four years
, I've had repeat patients whichis really fun where it's like
they're coming back with thatnext pregnancy and it's even
more exciting when their firstpregnancy may have had
(29:37):
complications and that I verymuch remember those patients.
I may not remember the averagepatient where everything was
good, unless we had a reallycool conversation or you know
they brought up something likeyou know Game of Thrones
finished and we talked aboutthat or something.
Maybe I remember that right,but in terms of you know those
patient indications and what'sgoing on medically, like I'll
(29:57):
remember those patients and liketheir their names are burned in
my brain.
We talked so many times andsometimes you're talking once a
week and how is this going?
And, and, and that's why we dothe job right.
Like that's, that's what keepsus engaged and feeling like we
can really help people.
And I think there is that partof our title that is counselor.
(30:17):
But also the part that'smissing in our title is that
educator part.
Like I really do like thataspect of teaching, and I know
you've done that in differentcapacities and different roles
you've had over the years, matt,and I think that just the blend
of all of that is what's sointeresting.
And then you got to keep up inyour field and I try, I try to
keep up in all areas of geneticsand then you know you can't, so
(30:39):
it's like all right, I got tokeep 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, andit's like okay, there's 10
things in there that I want totalk about.
Kira Dineen (30:53):
Well, I start asking you a question.
It's like Kira, you're theguest.
Like, let's step it back, I'mnot interviewing Matt.
Matt Burgess (30:59):
No, but I've got two things on my list that I
absolutely must ask you aboutNow.
Number one it's something thatI've been wondering for a little
while and it's like oh, nexttime I talk to kira, I really
have to ask her about it nowtell me it's something to do
(31:19):
with courtney kardashian.
She featured your podcast inlike a blog or something and I
just thought oh wow, kira iskicking 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'relike, all right, this is spam.
Like cause it, it didn't evengo to the podcast Instagram.
Cause that I'm like, okay,maybe it's a listener, like you
know, if I don't know the nameyet, okay, I will get to know
them.
But I think it was to mypersonal Instagram and it was
just this like random person,and they barely had any
(31:49):
followers.
So I was like, okay, this seemslike junk.
And they're like oh, kourtneyKardashian wants to feature you
on Poosh, which is her huge blogand website.
Like has a whole brandingaround it.
And I was like, okay, well, whatwould the next steps be?
I'm like, you know what, I'lljust answer, because this is
(32:09):
probably bogus, but let me justtry.
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 wholearticle.
And I was like, all right, Imean, it only took me whatever
half hour, an hour, to answerquestions.
I'm like, all right, sure, whynot?
Matt Burgess (32:22):
and then it just went, so I didn't get to talk to
courtney, yeah but you weren'teven sure if it was real at this
stage I was not sure if it wasreal.
Kira Dineen (32:30):
I was like this just seems fake and I'm like
maybe we'll end up on some otherwebsite and just hopefully it's
an okay website, like.
But they were saying theyworked for courtney and courtney
kardashian and everything, andand then months went by, forgot
about it and then all of asudden my phone my phone is
blowing up.
I'm like, oh, like what's?
Did I post something byaccident?
Did I not edit something?
And I you know somethingmust've gone out or something I
(32:51):
don't know.
And then people were like, ohmy God, you're featured by
Kourtney Kardashian.
And I'm like oh, so I guess itwas real.
So it was.
It wasn't a very glamorous likehaving it happen, but then once
it was out there, it was it wascrazy.
And so my my dad's side of thefamily which is how I have my
last name my mom changed herlast name when they got married
(33:11):
and so when I saw my dad'sfamily they were like, oh my God
, the Dineen name is now withthe Kardashians and everybody
was like making it about my lastname and our family and not
about the podcast, which was fun.
But yeah, so that was kind ofyeah, definitely a cool moment
to be like, oh, we're featuredon a Kardashian website.
So didn't think you know akardashian website.
(33:33):
So didn't think you knowgenetics kardashians like didn't
think that would be someonewe'd collaborate with.
Matt Burgess (33:38):
so yeah, oh, that's so funny because I was
sort of picturing you flying outto california and, oh I wish,
see, that's what I should havesaid 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 lessonis it's worth just answering
those, even when you're like,well, I mean, don't get personal
information.
But if you're just answeringquestions, that's public stuff.
Yeah, why not?
It could end up on KourtneyKardashian's blog.
Matt Burgess (34:05):
So yeah, I think that's good advice.
You never know where somethingis going to lead or you know
what the opportunities are.
So I think, yeah, grab themwith both hands.
Kira Dineen (34:15):
Yeah, why not right ?
It took me an hour and it wasso worth that hour.
I would have spent 10 hours ifI knew it was going there, right
?
Matt Burgess (34:24):
Yeah, and so you mentioned teaching, and yes,
that is something that I aminvolved with.
Kira Dineen (34:31):
I teach a course in the the bay path university I
wasn't sure if you were stillinvolved with them with, like
the time difference oh, I'm soglad you've stayed and I see
behind you that you have janice,one of janice berliner's books
actually two of her books backthere 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 behindme too.
I think they they're behind thechair, so you can't see that
level.
But yes, I recognize, becauseshe 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 tosay all good things.
Kira Dineen (35:10):
Yeah, no, love the books.
It is an authentic thumbs up onmy end.
Matt Burgess (35:14):
Yes, but I see that you are working with two of
the students that I taught lastyear.
They're now in their secondyear and you're involved in
their capstone research.
Can you tell me a little bitabout 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, sothat ended up working out really
well, because I'm based inConnecticut and Bay Path is
technically Massachusetts butit's an online program, so
you've got people everywhere.
You're a great example of that.
You really can't get furtherfrom Massachusetts than where
you are, so that you know rightthere.
(35:52):
And so she was my summerstudent and you know she had
mentioned her thesis project andI was like, oh, that's really
interesting.
Like I've had cases of patientswhere they did paternity
testing while they were pregnantand you know we learned if
there was non-paternity or not,so we would just talk about it.
And then, you know, towards theend of the summer of her
(36:15):
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 Janicesays yes, then I would love to.
And then she introduced me toTaylor and so I've been working
with them along with the otherteam members, and, yeah, it's
been great because we've beenable to leverage the DNA Today
(36:36):
audience to have people fill outthe survey all about of genetic
counselors that have comeacross cases of non-paternity,
and so it's been just reallyinteresting and it's just such
an interesting topic that Idon't think we talk about a ton
um.
I got to interview maury povicha couple years ago around
(36:58):
father's day and um foramericans that may be a familiar
name um, if you're homesickfrom tv, you probably watched
his, his show, because he washaving couples come on and they
would do paternity testing.
So he his catchphrase kind ofyou're the father, you're not
the father, you're not thefather, and you know he'd open
the envelope and you knowthere'd be, you know, such a
reaction.
And so I got to interview himbecause he got to do probably
(37:21):
more paternity testing than anyother person in the world, I
would imagine.
And so I actually told him somefacts about did you know,
you've had some of the mostrarest cases in the world.
And he was like I had no ideaabout all this.
I was like, yeah, like you're aname in the paternity world.
Matt Burgess (37:35):
That's so funny.
I mean I was more a Ricky Lakeand 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 isevolving, because I think when I
started out, paternity testingwas just something that we
didn't do.
It was like, no, we do clinicalmedicine and paternity testing
was just something that wedidn't do.
It was like, no, we do clinicalmedicine and paternity testing
is not clinical medicine andit's not relevant and it's not
sort of something that we do.
But sometimes it is relevantand sometimes we do do that and
(38:08):
sometimes we, through testingfamilies, we can find out that
somebody who was assumed to bethe dad is not the dad.
Kira Dineen (38:16):
So I think that it is important that there is
research going on about thistopic and that it's important
even from that medicalstandpoint, because at first
you're like, okay, well, thatthat's not a medical test
necessarily.
But when you go through thewhole family history and it's
the wrong family history, that'snot the biological family
(38:39):
history.
Or you've done carrierscreening for the pregnant
person and their partner, thepresumed father of the baby.
I'm still kind of strugglingwith what terms to use to be
super inclusive.
So let me know if you havefeedback for me, matt.
But so I think when it comes tothat, it's like that's so
important, because what if wedid carrier screening on the
wrong person and we think thatthere's a low reproductive
(39:01):
chance for a condition likesickle 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 soimportant.
And I have to say, obviously weboth talk to a ton of genetic
counselors.
I haven't really come acrossmany that do the paternity
testing and when it comes upwith patients, yeah, I will
(39:25):
order that and do it, whereassome places say, nope, you got
to go somewhere else for that,and obviously that's not always
up to the genetic counselor thatmight be the institution you
can probably relate to beingsmall private practice kind of
thing.
It's like it's much easier forme to talk to the one person
that owns the private practicethat is, the maternal fetal
medicine doctor and say, hey, Ithink this is something we
should do, is that cool?
(39:45):
And he's like yep, and that'sit, like there's no red tape.
I don't work for these hugeuniversities, but I don't know,
I think it's, it's a genetictest.
Why wouldn't we be orderingthat?
Matt Burgess (39:55):
That's my viewpoint on it, yeah
no-transcript question and I,you know, in the australian
(40:17):
context, most genetics happensin the public health system and
I kind of think, you know, maybethere is an argument that
public health dollars shouldn'tbe spent helping people find out
, you know, paternity issues.
I don't know, maybe there's anargument.
Each way, however, like likeyou, I work in a private clinic.
(40:41):
Uh, you know, I've got the, thedoctor who I work with, who is
the medical director and ownerof the company, and yeah, I mean
, it's not something that I dovery often, but I'm actually
working on a non-invasiveprenatal paternity case at the
moment and I think it's a greatsetting.
Like I'm there, I'm able to help, it can be really helpful for
(41:05):
this person and I think, yeah,in the private setting, in the
private sector, it's completelyappropriate.
Kira Dineen (41:11):
So yeah, yeah, I agree with that.
It's people that are, uh, thepatients that I see.
If they do opt for that and andI'm not offering this in every
session, it's just when someoneasks for it.
So that that's just the waythat you know.
I do my sessions, um, andthey're paying out of pocket for
it.
I don't know of insurancecompanies that cover that Um,
(41:32):
and for anyone that is a geneticcounselor or someone that may
be ordering paternity testing,it's probably going to differ
for each country.
They're doing that is becauseif the father is confirmed to be
(41:54):
the biological father, they maybe paying child support and
there may be legal implicationsbehind that.
So, like I make sure that thecompany um that I'm ordering
from is that checks all thoseboxes, um, but it is expensive,
it's, it's a couple thousanddollars yeah um, at least last
time I did it.
Yeah, it's expensive, a couplethousand american dollars.
Matt Burgess (42:12):
Yeah, I guess you you know, if you're testing
people that have already beenborn, it's relatively cheap, but
when you're doing it in aprenatal 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 whilethey're still pregnant, so yeah,
and there's kind of a protocolyou have to do and you have to
look at people's license andlike you're swabbing.
And yeah, I had to read throughthe instructions a couple of
times just because I was nervousmessing 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 talkingto you about lots of things.
There was one last thing on mylist that I wanted to talk to
you about, so maybe we can sortof finish up there.
But I know that you've had somerecent experience with CRISPR
and I think like the next bigarea of genetic counselling and
(43:04):
you know, in the clinicalgenetics world is sort of gene
therapy.
You know, it wasn't that longago that we were able to
diagnose these conditions, butthere wasn't any real treatment
and that's really changing.
So can you tell me about sortof 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 haveall of these research papers,
but I just talk about it andlearn from other people about it
.
But I had a really interestinginterview earlier this year with
Victoria Gray and she was thefirst person through a clinical
trial to be using CRISPR toalleviate her symptoms of sickle
(43:47):
cell, and that's episode 288and 289 of DNA Today.
Because we had such an amazingconversation, we ended up
splitting it into two episodesand I think what's so
interesting is that now forsickle cell, we do have this.
I've kind of been learning ofwhat language we should use
around this and I think the termcure is too much because we
(44:15):
don't know that it's reallytruly going to mean zero
symptoms for that person.
Um, victoria gray has been veryopen.
She's been on npr, good morningamerica, all kinds of huge news
outlets, um, and then littlebaby dna today on there too, so
we get our name along with thosehuge dates.
But it's just amazing how herlife has completely changed.
I mean she's able to travel anddo all the speaking now and
(44:35):
just live a life free of thesepain crises that people with
sickle cell experience, that Ido not have sickle cell myself.
From what I've heard frompeople with sickle cell, it's
just absolutely excruciatingpain and having that.
You never know when it's goingto come on.
And so to hear that she wentthrough this CRISPR curative
(44:59):
therapy to and now her symptomsare gone is just remarkable, and
that she went through this in2019.
So it's been five years now andshe still doesn't have symptoms
.
And now it's been five yearsnow and she still doesn't have
symptoms.
And now it's FDA approved andit's just it's amazing that
we've gotten there, because Ithink about in 2012, when I
(45:21):
started DNA Today, there was alandmark paper that came out
about CRISPR and obviously weknew about it before then, but
like that, that was a really bigpaper.
And now, 12 years later, we nowhave an FDA approved treatment
using CRISPR and it's just like,how did that happen in?
12 years later, we now have anfda approved treatment using
crisper and it's just like, howdid 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
(45:43):
high school.
We we started talking aboutthis thing called crisper.
Now we have this.
I did not think it'd be beforeI was 30, um, so I think that
has just been amazing.
It.
As amazing as it is, and as muchas we should celebrate this as
a huge milestone in genetics andmedicine, it also is not going
(46:03):
to work for everybody and noteverybody is going to be
eligible for it.
So I don't want us to losesight of all the other therapies
that are so important, theother drugs that are coming to
market.
Um, I think that's so important.
And and for people to likelearn about this and be like,
okay, well, is this crispercurative therapy?
Is that the best for me?
(46:24):
Um, and not just to like jumpinto things because it's.
It's quite a uh, from whatvictoria gray explained to me
it's, it's, it's not.
You pop in, get it and you popout of the hospital.
It's much more involved thanthat.
But, as you said, I thinkthat's an area that I've really
kept tried to keep a pulse on ofwhat's happening with CRISPR,
and it's just exciting to hear abunch of other genetic diseases
(46:46):
where we're starting to do thisand have different treatments.
So I think if there's somethingto go down a rabbit hole, it
would be CRISPR.
Matt Burgess (46:54):
Excellent, I completely agree.
And you know, on that lovelypositive note, I think that's a
perfect time to to end.
You know, let's catch up everycouple of years for a podcast.
Kira Dineen (47:06):
At least at least Matt, please this.
This is great and you do such agreat job.
You make it so conversationaland, you know, I think podcast
listeners may not be able tofully appreciate that, because
it is hard to make aconversation about genetics and
science and all these toughtopics very conversational and
fun and engaging.
So, thank you, You're anawesome host.
(47:27):
No, thank you.
Matt Burgess (47:31):
I've had a really good time.
So thanks for your time andI'll talk to you later.
Kira Dineen (47:36):
Thanks, Matt Bye.
Matt Burgess (47:40):
Bye.
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