July 16, 2023 • 39 mins
Get set for an enlightening journey into genetics and writing with the remarkable Janice Berliner. Our conversation traverses her career evolution from being a genetic counselor to steering the helm as a program director, revealing her fears, inspirations, and her passion for nurturing the next generation in the field. She's also candid about her plunge into academia and the transformative landscape of genetic testing technology she's witnessed over her career. The second half of our chat takes a thought-provoking turn, exploring the crossroads of ethics, genetics, and writing. Berliner's decade-old book on ethics in genetic counseling is a testament to its enduring relevance. Hear her insights on the delicate dance of discovery and patient communication and her aims of making genetics more accessible to the average person. We also discuss the representation, or lack thereof, of genetic conditions in fiction, and the importance of authenticity in writing. A conversation with Janice Berliner is a deep dive into the human side of genetics and the power of storytelling in science. Tune in, you won't want to miss it! https://janiceberliner.com/ https://www.baypath.edu/academics/faculty-directory/biography/janice-berliner/ https://a.co/d/2OdBE29 https://a.co/d/6aP8yOs
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 (00:00):
G'day and welcome to Demystifyin Genetics.
My name is Matt Burgess and Iam the host.
Today.
I am Demystifyin Genetics withGenetic Counselor Janice
Berliner.
So Janice is a board certifiedand licensed genetic counselor
in New Jersey and she is thegenetic counseling program
director of the Masters ofGenetic Counseling at Bay Path
(00:24):
University.
But not only that, she is anauthor as well.
So on the program today wemainly talk about her writing
career and interesting littletidbits that she has to share
along the way.
Hello and welcome toDemystifyin Genetics with Janice
Berliner.
Janice Berliner (00:43):
How exciting.
Matt Burgess (00:44):
Thank you, janice.
Janice Berliner (00:46):
Thank you for having me.
I'm excited to be here.
Matt Burgess (00:48):
Now you're a genetic counselor, a genetic
counseling program director, butalso a celebrated writer, so I
would love to discuss all ofthose things with you today.
Janice Berliner (01:02):
I would love that as well.
Matt Burgess (01:04):
So, just in passing, I remember you saying
one day and I didn't get achance to ask you about it but
you said that you always wantedto be a genetic counseling
program director and that kindof just stood out.
I thought, oh, I need to askyou about that.
How, how or why, how did thatcome about?
Janice Berliner (01:24):
It's a good question and I don't even know
that I can answer it.
I remember the timing betterthan I remember the reasons.
So my very first job as a newgenetic counselor was at Maasai
Nye Medical Center in New YorkCity, and the only reason I left
that job is that I was gettingmarried and I was moving, and
(01:46):
the very day that I announced myresignation was the day they
announced they were starting agenetic counseling training
program and I remember I wenthome and cried because if I had
known they were starting theprogram, I would have stayed.
So I don't remember the reasonswhy I wanted to do it.
I just remember knowing fromyou know, a year and a half into
(02:08):
my career, that that wassomething that I wanted to do.
I had a little bit of a notdifficult relationship I'm
trying to think of how to saythis.
I felt very intimidated by myprogram director.
I felt like I had let her downin a lot of ways, that I wasn't
as good a student as I couldhave been, and maybe it stems
(02:30):
from that.
You know, I don't know if it'sso psychologists are probably
analyze it and say you knowyou're trying to please your
parents or something like that,but it's something I had always
wanted to do and I looked formultiple opportunities
throughout my career to switchfrom the clinical counseling I
was doing into academia.
And it wasn't because I didn'tenjoy the clinical counseling or
(02:52):
that I didn't think I was doinga good job with it.
It's just I felt like mentoringand nurturing the next
generation of genetic counselorswas a calling of mine.
Matt Burgess (03:03):
Excellent.
Okay, it's so funny.
I think that a quality that alot of us have as genetic
counselors is conscientiousness,so it sounds like probably at
university.
You know, I'm sure you were agreat student and maybe we can
all do a little bit better.
Janice Berliner (03:19):
But yeah, I don't know I don't think I was a
great student.
I appreciate the sentiment, butI don't think I was a great
student.
I think I worked really hardand I and I meant well, but I
think that I was right out of mycollege years, didn't have the
world experience that myclassmates had in a job.
Matt Burgess (03:41):
Okay, well, it's interesting that you're able to
sort of sit back and reflect onthat now, and hopefully that
makes you a better geneticcounseling director.
Janice Berliner (03:52):
With 150 years of my study time.
Matt Burgess (03:57):
So when I was preparing for this podcast, I
did a little bit of backgroundchecking of you and it's really
obvious that you'd like writing,you're a writer, so that sort
of came through in the fact thatyou edit, or you edited a book,
(04:18):
and then you've written anumber of academic journal
articles, but also writtenfiction.
So one of the speaking of 150years what of the articles that
I came across was an articleabout genetic, genetic
counseling for fragile X, andthat was back in 1994.
(04:42):
That's scary, and I was kind of, you know, doing the math so I
was like, oh god, that's like 30years next year.
Yeah, yeah, so did you.
I think you said that yourfirst sort of career in genetic
counseling was general orprenatal, and then you sort of
went into cancer and then youwent into teaching.
(05:03):
Is that how it worked?
Janice Berliner (05:06):
Yes, the first nine and a half years, I want to
say, were largely prenatal,with some pediatrics sprinkled
into it.
Matt Burgess (05:15):
Okay and like it was really interesting reading
the abstract of that articlebecause technology has changed
so much and how we test forfragile X and what we know, and
you know how fast we're able totest.
It's amazing that you know likethings have changed and evolved
(05:35):
so much.
Janice Berliner (05:36):
Funny story I would love to Related to
technology.
I have what I think is a veryfunny story.
When I was a genetic counselingstudent at the University of
Michigan in the very late 80s,we had to do two student
seminars once it first year andone in our second year and we
(05:56):
weren't doing our own research.
So therefore we were presentingsomeone else's research, which
is, for anybody who's ever doneit, as an extreme challenge,
because then you ask questionsabout it.
I don't know.
And in my second year I did aseminar on the brand new no
One's Ever Heard of ittechnology of PCR.
(06:17):
And one of the people in myaudience because he was then a
medical geneticist at theUniversity of Michigan was none
other than Francis Collins.
And for your listeners whomight not know the name, he was
first the director of the HumanGenome Project and then the
director of the National HumanGenome Research Institute for a
very, very long time, juststepped down maybe six months
(06:38):
ago.
So when I tell people I taughtFrancis Collins about PCR, I
think that's hysterical.
Matt Burgess (06:45):
That is hilarious.
That's hilarious.
Sure, yeah, it kind of remindsme, you know, like I did genetic
counseling at university in2004.
So you know, that's nearly twodecades ago now and although I
loved the course, I think at theend I was so ready to get out
and work and I think by the timethe end of the course came
(07:09):
around, I had had enoughlearning and I kind of it's
really funny to say it out loudnow, it's a bit embarrassing,
but I remember thinking okay,I've learnt chromosomes, I've
learnt carrier type, that's allI need to know.
I've got no more room left inmy mind for this new thing
called an array.
Like it's too complicated, Idon't understand it, I won't
(07:31):
need to think about it.
It's kind of like, okay, I'vegot a job, I settled down, and
then it's like okay, I think Ido need to learn about this new
thing called an array, I thinkit'll be around for a while.
So it's kind of a similar thing.
Janice Berliner (07:49):
It kind of is.
But you know, when I graduated,there was, there were
chromosomes and, of course, andthere was DNA testing.
I'm not gonna graduate theStone Age, but there wasn't a
lot more than that.
I mean there were no microarrays and there wasn't PCR yet.
I mean there was, but not inreally common usage and we
(08:11):
weren't learning about polygenicrisk scores or like a million
other things that now we'retrying to teach our students and
we're thinking, oh, we neverreally learned this, at least
not in an academic setting.
In fact, we didn't even learnanything about cancer genetics
Part of the profession I spent20 years of my career working on
(08:31):
.
We didn't learn in schoolbecause it didn't really exist
yet.
I mean, fundamentally we knewthere was something hereditary
about a lot of cancers, but itwas in its infancy then, kind of
the way we look at psychiatricgenetics now, where you know we
know there's somethinghereditary and we can certainly
counsel families about risk, butwe can't do anything about it
(08:56):
without the molecular tools,right?
So we didn't have cancergenetics clinics.
We didn't learn about cancergenetics in our training.
So any of us my age or older,or even maybe five years younger
, who do cancer counseling havelearned it on our own on the job
which has been interesting.
Matt Burgess (09:17):
I think it goes to show the point that in genetics
we are constantly learning andyou know to be on top of our
game it's important to have thatongoing professional
development and things arechanging all the time and you
know it's important for us tokeep up with that.
You know I was going to say Iteach genetic counseling at uni
(09:37):
and you're actually my boss, soyou know that I was.
Janice Berliner (09:41):
I don't think of myself that way.
Just so you know we arecolleagues.
Matt Burgess (09:46):
One of the things I think about, or I thought
about last year, was oh, do Ineed to teach the students about
linkage?
And like, on one hand, I thinkit's important that they know
this process.
That used to be very, very,very important, but you know,
you can go years now in yourcareer and never have to discuss
(10:06):
it or understand it, and, yeah,it's interesting, it's true.
Janice Berliner (10:11):
You know there are certain aspects of our field
and medicine in general thatbecome antiquated fairly quickly
and you go back and you look atjournal articles, like you did
with the Fragilex article, andthink, okay, so this used to be
state-of-the-art and now it'salmost funny, it's sort of cute
that that's how we used to dothings and not anymore.
(10:35):
But you know, every lesson welearn makes the next lesson that
much easier.
So we can learn at I don't knowif it's an exponential rate,
but certainly at an acceleratedrate, because everything we
learn is the basis for newthings and makes it easier and
quicker and generally lessexpensive.
Matt Burgess (10:55):
Exactly less expensive than faster?
Yes, Right, so you edited agenetic counseling book about
ethical dilemmas in clinicalgenetics.
I know it's sort of during ouryou know, when we study genetic
counseling at uni, there's a bigcomponent that is about ethics
and morals and that sort ofthing, and I think it's
(11:18):
completely appropriate.
However, I was kind of thinkingback like day to day.
It's not like we have 40 hoursa week of ethical dilemmas as a
genetic counselor, but it'ssomething that we do need to
know about, and I was justwondering if you could tell us
how that book came about and howyou sort of picked which
(11:38):
chapters, and you know that sortof thing.
Janice Berliner (11:42):
I think this is an interesting story.
I had gotten a call completelyout of the blue one day from an
editor at Oxford UniversityPress who I didn't know.
Who said how did he find myname?
I think I was on the board ofdirectors of the American Board
of Genetic Counseling at thattime and I think that's how he
(12:04):
found my name.
And he said I've been at somegenetic counseling conferences
recently and genetic counselorsare avid readers but they have
nothing to read.
We're trying to sell books tothem, but there's nothing on
your field really to sell.
Would you be interested inwriting something?
And I was dumbfounded.
I said well, maybe.
(12:24):
What do you have in mind?
He said we would love for astudy guide to prepare students
for boards, which was kind ofcomical.
It's not exactly a book to read.
But I thought well, that'sfunny that you say that, because
I had actually written a studyguide years prior for the boards
.
That was simply based on myefforts at studying and my late
(12:46):
father's admonition that I'mputting so much work into
putting this together, I mightas well not be the only one to
benefit from it.
So I had put together a studyguide for three different cycles
of the exam and back then theywere only given every three
years.
So I did a first, second andthird edition in 1993, six and
nine I think it was.
So I thought, well, that wouldbe interesting, because I've
(13:09):
kind of done this before.
But because I was on the boardof the organization that created
the exam, I said I can't, thiswould be wholly inappropriate
for me to do.
Total conflict of interest.
He said so well, what would youlike to do instead?
Because I'd still like to haveyou write something.
I said let me talk to a coupleof colleagues, and I called a
(13:32):
genetic counselor, a colleaguewho I utterly respected and
adored, and said what do youthink about this?
She said, janice, I have fiveminutes to talk, but let's talk
this out right.
She said I think we need a bookon ethics and here are some of
the topics I think you should do, and I think, instead of five,
we probably talk for 10 minutes.
But in that 10 minutes we bangedout which chapters we should
(13:53):
have and, potentially, who couldwrite them, and then I took it
from there.
She said good luck.
And I took it from there and Icontacted all of these genetic
counselors, many of whom Ialready knew, and recruited them
to write their chapters andthen kind of cracked the whip to
make sure they all got done ontime so that I had time to edit
(14:14):
them.
So the only thing that I wrote,or I created, I should say, for
the book is the case examplethat we then used as a thread to
tie all the chapters together,so you don't have to read it in
any kind of order, but a familyis presented at the beginning of
the book and then each ethicalprinciple described in the
(14:34):
chapters relates back to thatfamily in some way.
So I created that and kept ontop of the chapter authors and
was the liaison back to OxfordUniversity Press OK and edited
it.
Matt Burgess (14:49):
Like it's interesting, as we were talking
before about fragile X in yourpaper and how it's kind of
comical now, but this textbookis about 10 years old but still
completely relevant.
And there's a chapter aboutdirector-consumer testing and I
think that's even more relevantnow.
There's a chapter aboutincidental findings and I think,
(15:11):
as genetic testing is becomingfaster and cheaper and more
complex and complicated, we'recoming across more and more
things that we weren't planningon coming across.
And then what is the ethicalthing?
Should that not be reported?
If it is reported, should wenot tell our clients?
(15:34):
But then, if it's written down,do we tell our clients or do
they want to know about that?
And how do we consent them forthat?
Yeah, I find that fascinating.
Janice Berliner (15:45):
I do too.
Matt Burgess (15:46):
Yeah Well, I recently went to a conference
and one thing that I hadn't evenreally considered was there was
a little, there was a sessionwhere the scientists were
talking about how they feltabout discovering things and not
reporting them, and as aclinician that orders genetic
(16:08):
tests, I kind of thought, oh youknow the lab people, they're
used to that.
You know, just don't put itdown, I don't want to know about
it, but you know, it doesn'tmatter if you know.
But then for them to actuallysay, well, actually this is a
burden for me as well and Ithought, oh, the scientists,
maybe they need like supervisionand they need to sort of come
together and talk about thesecases.
Janice Berliner (16:28):
So yeah, it was really interesting Point.
Yes, and I think you know weend up being somewhat siloed in
our lanes, right, you have theresearch scientists.
Then you have the laboratorypeople who are actually
physically doing the test butnot seeing the patients
connected to them.
And then we have the physiciansand the genetic counselors who
(16:48):
are actually physically seeingthe patients but didn't do the
research to find out how to dothat test in the first place.
It didn't actually implementthe test, you know.
And then you have the patients,who don't care about any of
that, except how does thisaffect my life and what do I do
with this information?
And so we act as the liaison,really, between the research and
(17:10):
the lab and the patient, but weare not the patient, right, we
don't actually go home with that.
I mean, some of us are, some ofus do actually have genetic
conditions, but it is adifferent lens to look at it
through, which is terriblegrammar, but I think you know
what I mean and that was part ofthe reason.
Actually, if I may segue, that Iwrote the novels.
(17:33):
That I did is in order to makegenetics a little more relatable
to the average person.
You know, you can pick up anovel and, yes, you're learning
something, but you're not beinghit over the head with it and it
doesn't necessarily apply toyou, but you can at least maybe
see how genetic disease affectsfamilies and their relationships
(17:55):
and the way they look at theirfutures and their health care
and their finances and theireverything that relates to it
that we think we know about asgenetic counselors but we don't
go home with it.
So that was kind of the idealto give you a way to kind of go
home with it.
Matt Burgess (18:13):
OK, perfect segue.
We need to talk about yourbooks.
And it's interesting becauseyou know we're genetic
counselors.
We could sit down and talkabout genetics with each other
all day long, you know, over acup of tea or glass of wine, and
that was one of the reasonsthat I started this podcast.
You know the mystifyinggenetics.
I think that laypeople like tosort of understand a little bit
(18:38):
about genetics and I hope thatyou know people are able to
listen to these podcasts andunderstand what we're talking
about and take things away.
But I know that the geneticcounselors love it as well.
But, yeah, so it's interestingto hear that that was sort of
one of the reasons that youstarted writing your fiction.
So the first book I think thefirst book is my favorite.
Janice Berliner (19:02):
So it's probably mine too.
Matt Burgess (19:05):
Are you allowed to have favorites as an author.
Janice Berliner (19:08):
I don't know.
It's kind of like picking afavorite child you love them
equally for different reasons,or something like that.
Matt Burgess (19:16):
So your first book is Brooks Promise.
When I was thinking about this,I feel like with your second
book, in Good Conscience, I cantalk about it without giving
things away.
But with Brooks Promise I feellike I have to be really careful
what I say, because I don'twant to give anything away, but
so how there are a lot ofspoilers in that one for sure.
(19:38):
How do you explain or describeBrooks Promise?
What is it?
What's it about?
Janice Berliner (19:46):
I do it very simply and it really probably
doesn't do the book justice intotal, but I simply say that
it's a story of a young couplewho wants to have a baby, has
some difficulty at first doingthat, but through in vitro
conceives a pregnancy and whenthe baby is several months old
(20:06):
they find she has a fairlysignificant failure to thrive.
That at first the pediatricianisn't too concerned about and
then after a while decides yeah,maybe this baby ought to see a
geneticist who ultimatelydiagnosis the baby with a pretty
serious metabolic disorder.
And in trying to figure out howdid this happen to them, the
(20:30):
couple ends up uncovering allsorts of repressed memories and
secrets in the family thatpretty well threatened to pull
the whole family apart andnearly do, and there's a lot
more to it, but that's the basicpremise in mind.
Matt Burgess (20:49):
Excellent and one of the things I sort of was
interested in.
Like I really enjoy reading.
I like reading fiction.
I don't really read that muchnonfiction, apart from journal
articles and that sort of thing.
When you are a writer, can youremember everything in the book,
like because I remember I readit but then I've forgotten a lot
(21:11):
of details.
But is it sort of like, do youremember all of the details of
the book?
Janice Berliner (21:17):
I'm sure I remember more than you do, not
only because I wrote it to beginwith but because I've read it
so many times in the editingprocess.
But there are certain things,like I did a book group last
night about In Good Conscience,the second novel, and we were
talking about the maincharacters, two siblings, and I
thought, darn it, I don'tremember their names.
(21:38):
They were pretty unceasingcharacters and shoot, I don't
remember the names that I gavethem.
And somebody said somethingabout a character named Kevin
and I was, oh yeah, kevin, whatabout him too?
Because he was not a huge partof the story.
I don't think he wasunimportant, but he just wasn't
that big a part of the story.
So when I think about the bookI don't, that's not the first
(22:00):
place my mind goes so no, Idon't.
I don't remember every singledetail and sometimes when I do
reread something I think, oh,wow, like I can make myself cry
by reading my own writing.
Which is just weird.
It's kind of nice, like, yeah,I wrote that and it still makes
me sad or frustrated or angryCute.
Matt Burgess (22:23):
Oh, that's funny.
Oh, so we're going back toBrooke's promise.
You know, there's not a lot offiction that I read where there
are genetic conditions in there.
And then, you know, I hardlyever see genetic counselors sort
of represented in books or inTV shows.
(22:45):
What's that?
Oh, Gadica, I remember Gadicaand the genetic counselor was a
black man and I thought, oh myGod, like that's amazing because
most genetic counselors arewhite women.
So he's like I was like, oh,that's like me.
But do people in genetics giveyou good feedback about your
(23:10):
books and is it different topeople that don't work in
genetics?
Janice Berliner (23:17):
Well, it's different in the sense that they
know where I'm coming from inwhat I'm writing, and so it
means, in some ways it meansmore to me, you know, because
you don't see a lot of geneticcounselors represented in books,
and so when I saw it the firsttime I saw it represented in a
(23:38):
book was in one of my veryfavorite books called Inside the
O'Brien's, which is written byLisa Genova, who wrote Still
Alice and a bunch of other booksabout neurologic disorders, and
she was one of my biggestinspirations for writing.
I thought perhaps I could dofor genetics which she did for
neurologic conditions.
(23:58):
Anyway, she had what you and Iwould think of as a genetic
counselor.
In her book she called him asocial worker, which a little
irritated me, but the sessionthat she portrayed was really
very good and really showed thisperson also male, by the way in
a very good light, so I washappy about that.
(24:25):
When I hear back from geneticcounselors who've enjoyed my
books and say that it'sauthentic to them, very, very
meaningful.
The most powerful thing, though,is when I hear from a patient,
from somebody who says Iactually have, for example, a
family history of a hereditarycancer syndrome, and it rings
(24:47):
true to me and I heard that lastnight in this book and I have
to tell you that means the world, because it's hard to know.
You know, when we're counselingour patients, we think we're
being empathic, we think we'rebeing understanding, we think
that we are listening activelyand really kind of get into the
meat of what the patient means,but we don't always know that
(25:10):
we're actually succeeding indoing that.
So when I feel like I wrotesomething that speaks to
somebody in a situation likethat, I think so.
I did listen to my patients,you know, maybe not every one of
them I'm not saying I dideverything perfectly certainly
not but that I gathered enoughinformation over the years that
I was able to write somethingthat feels authentic both to the
(25:31):
genetic counselors and to thepatients.
It's awesome.
Matt Burgess (25:34):
Yeah, I would think that that is the hardest
thing to do being authentic.
It kind of reminds me I meanthis is a bit of a segue, but
with the new Sex and the City atthe moment I don't know if you
watched the old series and thenI did.
Janice Berliner (25:51):
I watched the old one, not the new one.
Matt Burgess (25:53):
The new one.
It just doesn't feel authentic.
You know, like I think we alllove the characters, that we
wanted them to come back, andthen you watch it and it's like,
oh okay, it's not authentic.
So I think that I mean thatauthenticity is really hard and
it's.
You know, it's amazing whenyou're able to do that.
(26:14):
You know, as genetic counselors, it's a stressful job and you
know we're empathic and it'sgood to be there for our clients
.
However, you know it's notabout us and for a lot of our
clients, it's the worst thingthat they'll ever go through or,
you know, one of the mosthorrible sort of processes.
Janice Berliner (26:35):
So, yeah, I think to be able to write Right,
and for us it's almost, youknow it's Tuesday.
I mean it doesn't mean that wedon't care about our patients.
It's just that, yes, we're hitby it a lot and we have to find
ways to care for ourselves inways that we can, you know,
maybe not take it home.
Matt Burgess (26:52):
Yeah, I also loved Inside the O'Brien's.
It's about my favorite of thegenetic condition that I like
working with the most Huntingtondisease.
I really like fragile X as well.
I like cancer, but yeah, Ithink Huntington disease is
probably my favorite conditionto work with, even though it's
(27:14):
sort of a horrible condition andas someone that if you can have
a positive impact on a family.
Janice Berliner (27:22):
That's what it's all about, because this
family is going to go throughtheir Huntington whether you're
there or not, but if you canhelp them through it and make it
an easier process, it'sfabulous.
So this woman in our book grouplast night who is part of a
hereditary cancer family saidthat she has a very, very large
family and they've all beenfollowed by one genetic
(27:44):
counselor over 30 years and shesaid we would have made it
without that genetic counselorand it was just.
It was really sweet for me tohear.
I asked her who it was.
I do know the person not well,but for a long time and it was
just really gratifying to thinkthat she had made such a
difference in the lives of thesefamily members.
Matt Burgess (28:04):
Yeah, that's amazing.
I was thinking about the issuewhen we quit a job and we move
on and leave our families behindlike it's such a privilege and
an honor to be able to work withthe same family, sort of in an
ongoing way.
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request a demo for free.
Go to trackjeancom Again.
That's trackjean In your secondbook In Good Conscience.
So it's about a young man.
(29:08):
I feel like I could explainthis book Please.
The wedding Too much away.
But you know he's good looking,he's successful, he's an actor,
he's doing really well.
But then he's diagnosed withcancer and I guess it's probably
not giving too much away thatmaybe there's a genetic
(29:31):
component to his cancer.
But is that sort of how youdescribe this book?
Janice Berliner (29:37):
Yes, yes, I do.
I say it's about a young,successful actor who's suddenly
very ill and one of the nursesin the cancer center where he's
being treated not his nurse, butone of the nurses looks in his
chart simply because he's famousand she's curious, which we all
(29:59):
know is the wrong thing to dobut she sees some things in the
chart that make her think thatthis could be something
hereditary, and she goes to meetwith him to try to explain this
to him, and he is quitenaturally, I rate, because I
don't even know who you are.
What are you doing?
Looking in my medical recordsand coming to talk to me about
(30:20):
it?
I didn't ask you to do that,but she is very involved in this
in her own mind, and you knowyou, as a reader, start to try
to wonder, wow, start to wonderwhy is she so invested in this
person?
She doesn't even know, and youknow you come to find that
there's somebody in her past whoactually suffered from the
(30:48):
clinical effects of a hereditarycancer syndrome, didn't ever
know about it and would havebenefited so much if she had,
and so that's why this nurse isso stuck on this topic.
And, long story short, thefamily does eventually come
around to understanding why andhow important it is to have that
(31:09):
kind of information, but notbefore this nurse goes through a
whole ethics board violationhearing because she did violate
his privacy and very easilycould have lost her job and even
perhaps her nursing licensebecause of it.
Matt Burgess (31:26):
And it sort of highlights the issue of duty to
warn.
And in genetic counseling oftenwe diagnose people but it's not
an isolated thing, it's sort ofwithin their familial context
and obviously that means thatfamily dynamics come into it.
And in a previous podcast witha genetic counselor from
(31:49):
Australia, laura Forrest, shewas an author on a paper that
looked at genetic counseling andpeople sharing results through
social media and there was aquote.
It was something like I don'ttalk to my sister but she needs
to know, and the lady was ableto reach out on Facebook and let
(32:13):
her sister know about theresult in the family and it's
like, oh, families arecomplicated.
Janice Berliner (32:19):
Families are very complicated and when we
think about duty to warn,sometimes it's not that the
patient doesn't want her familymembers to know, it's that she
doesn't want to have to talk tothem For whatever reason,
there's a rift.
So if the genetic counselor orthe oncologist, or whoever it
might be, is able to say hey,with your permission, I will
(32:42):
reach out to this person in thefamily.
But can you give me a littleidea of what kind of person this
is Like?
Is she likely to be angry?
Is she likely to be scared?
Is she likely to lash out, like, gather some information and go
at it that way?
But it isn't easy.
We try to I hate to use theword convince, but try to
(33:03):
explain to our patients why it'simportant for their family
members to know.
But my idea for that book inthe first place was the issue of
confidentiality versus duty towarn, and when I told people
initially about it they werelike, well, that sounds really
dry and boring.
But no, no, no, no, I won'twrite it dry and boring.
Matt Burgess (33:24):
Excellent.
So Rook's Promise came out in2019.
In Good Conscience came out in2021.
It's now 2023.
Hi, does that mean you haveanother book of the horizon?
Janice Berliner (33:42):
I do, but not.
You know, this seemed to be aSeptember, october kind of thing
.
It's not going to be ready forthat, unfortunately.
My job, as you well know, isbig and busy and takes a lot of
time, so I have not had the timeto devote to the next one.
I've written nine chapters sofar.
I don't actually know how manyit's going to be, because I've
(34:05):
only outlined maybe 10 chaptersahead of where I'm currently
working, although I have an ideaof where I'm going in the end.
Certainly this one's going tobe about familial psychiatric
illness.
Oh interesting, which I find avery interesting topic and
somewhat near and dear to myfamily history.
So it's important to me to talkabout it and my main two goals
(34:28):
with this are, first, to try towork with others to destigmatize
psychiatric illnesses to someextent, to make everybody
realize everyone has thesethings in their families,
whether they realize it or not.
You didn't do anything to causeit.
You couldn't have done anythingto prevent it.
But there are things you can doto mitigate it to some extent.
(34:51):
And I also want people tounderstand that what is
inherited is not the specificdisorder but the predisposition
to psychiatric disorders as ageneral topic.
So somebody doesn't pass onschizophrenia, but what might be
passed on is a propensitytoward psychiatric illness that
(35:13):
may take many different formsand different members of a
family.
So you may have one person whohas schizophrenia, one who has
bipolar disorder, one who has agambling addiction and one who's
anorexic, something like that.
Much like autoimmune disordersright, where you might see a
family where there's many moreautoimmune disorders than you
might expect just based onstatistics alone.
(35:34):
But they're not all the same.
Matt Burgess (35:36):
Yes, yeah, I guess we sort of refer to that as
multifactorial inheritance.
So there's genetic component,but environmental and whether if
we stay healthy or if we takedrugs or abuse alcohol and all
of those things can affect theoutcome.
(35:58):
So, yeah, that sounds veryinteresting and I guess in the
last few minutes I think we needto talk about our dogs.
Oh, okay.
Janice Berliner (36:10):
Always happy to do that.
Matt Burgess (36:13):
So I've got a dog called Banjo, Since I've never
had a dog before and now I'mobsessed.
And you have a dog calledWinston, and Winston and Banjo
are about to have their firstplay date.
Yes, very excited.
Janice Berliner (36:30):
Yeah, the one time I met Banjo, you dressed
him up, you showed me hisHalloween costume and you look
like a little hot dog and it wasthe cutest thing I ever saw.
Matt Burgess (36:39):
Yeah, I mean dressing up in costumes is not
his favorite thing to do, but itwas good to dress him up.
Janice Berliner (36:48):
Every game day we put Winston in the University
of Michigan Jersey and he'sokay with it.
Okay, he has his little go bluecollar around his neck all the
time.
He is a big Michigan fan.
Matt Burgess (37:00):
Do you think he identifies as a person from
Michigan?
Janice Berliner (37:05):
I hope not, since he's never been in the
state, but he's a good fan ofthe team basketball and football
.
Matt Burgess (37:14):
Oh, that's good, Because, yeah, banjo is about to
become an Aussie doggy.
We're taking him back toAustralia.
However, he is Amish.
He was actually born inPennsylvania, lancaster County,
so I'm not quite sure how heidentifies, but he's becoming
more Australian every day.
Janice Berliner (37:32):
Well, Winston was born on a dairy farm in
upstate New York.
For all I know, he's Amish tooGood and dying.
Matt Burgess (37:39):
Lovely Okay, before it gets any more
ridiculous, maybe we should stopthere.
Janice Berliner (37:46):
Well, ridiculous is our middle name,
Matt.
Matt Burgess (37:48):
Thank you so much for demystifying genetics with
me today.
I am going to put the links toyour fabulous books in the show
notes and yeah.
Janice Berliner (38:01):
I wish you and my website as well,
janisforlinnercom, if you'relooking for more information,
blog posts and things like that.
Matt Burgess (38:08):
Excellent Sounds good, so I wish you good luck
writing your third book.
Thank you All the best.
Janice Berliner (38:19):
Thank you.
Same to you.
We will miss you when you moveback to Australia.
Their gain is our loss.
Matt Burgess (38:24):
Thank you, I'll still talk to you.
Janice Berliner (38:27):
I hope so.
Hopefully you'll still workwith me too.
Matt Burgess (38:31):
Sounds good, thank you, bye-bye.
Janice Berliner (38:34):
Thank you Bye.
Matt Burgess (38:36):
So that's our show .
I'd like to thank Janis forbeing a lovely podcast guest
Always fun to chat with her.
I would also like to thankTrack Jean for sponsoring this
episode and, as always, a bigthank you to my producer, omiya.
G'day and welcome to Demystifyin Genetics.
My name is Matt Burgess and Iam the host.
Today.
I am Demystifyin Genetics withGenetic Counselor Janice
Berliner.
So Janice is a board certifiedand licensed genetic counselor
in New Jersey and she is thegenetic counseling program
director of the Masters ofGenetic Counseling at Bay Path
(00:24):
University.
But not only that, she is anauthor as well.
So on the program today wemainly talk about her writing
career and interesting littletidbits that she has to share
along the way.
Hello and welcome toDemystifyin Genetics with Janice
Berliner.
Janice Berliner (00:43):
How exciting.
Matt Burgess (00:44):
Thank you, janice.
Janice Berliner (00:46):
Thank you for having me.
I'm excited to be here.
Matt Burgess (00:48):
Now you're a genetic counselor, a genetic
counseling program director, butalso a celebrated writer, so I
would love to discuss all ofthose things with you today.
Janice Berliner (01:02):
I would love that as well.
Matt Burgess (01:04):
So, just in passing, I remember you saying
one day and I didn't get achance to ask you about it but
you said that you always wantedto be a genetic counseling
program director and that kindof just stood out.
I thought, oh, I need to askyou about that.
How, how or why, how did thatcome about?
Janice Berliner (01:24):
It's a good question and I don't even know
that I can answer it.
I remember the timing betterthan I remember the reasons.
So my very first job as a newgenetic counselor was at Maasai
Nye Medical Center in New YorkCity, and the only reason I left
that job is that I was gettingmarried and I was moving, and
(01:46):
the very day that I announced myresignation was the day they
announced they were starting agenetic counseling training
program and I remember I wenthome and cried because if I had
known they were starting theprogram, I would have stayed.
So I don't remember the reasonswhy I wanted to do it.
I just remember knowing fromyou know, a year and a half into
(02:08):
my career, that that wassomething that I wanted to do.
I had a little bit of a notdifficult relationship I'm
trying to think of how to saythis.
I felt very intimidated by myprogram director.
I felt like I had let her downin a lot of ways, that I wasn't
as good a student as I couldhave been, and maybe it stems
(02:30):
from that.
You know, I don't know if it'sso psychologists are probably
analyze it and say you knowyou're trying to please your
parents or something like that,but it's something I had always
wanted to do and I looked formultiple opportunities
throughout my career to switchfrom the clinical counseling I
was doing into academia.
And it wasn't because I didn'tenjoy the clinical counseling or
(02:52):
that I didn't think I was doinga good job with it.
It's just I felt like mentoringand nurturing the next
generation of genetic counselorswas a calling of mine.
Matt Burgess (03:03):
Excellent.
Okay, it's so funny.
I think that a quality that alot of us have as genetic
counselors is conscientiousness,so it sounds like probably at
university.
You know, I'm sure you were agreat student and maybe we can
all do a little bit better.
Janice Berliner (03:19):
But yeah, I don't know I don't think I was a
great student.
I appreciate the sentiment, butI don't think I was a great
student.
I think I worked really hardand I and I meant well, but I
think that I was right out of mycollege years, didn't have the
world experience that myclassmates had in a job.
Matt Burgess (03:41):
Okay, well, it's interesting that you're able to
sort of sit back and reflect onthat now, and hopefully that
makes you a better geneticcounseling director.
Janice Berliner (03:52):
With 150 years of my study time.
Matt Burgess (03:57):
So when I was preparing for this podcast, I
did a little bit of backgroundchecking of you and it's really
obvious that you'd like writing,you're a writer, so that sort
of came through in the fact thatyou edit, or you edited a book,
(04:18):
and then you've written anumber of academic journal
articles, but also writtenfiction.
So one of the speaking of 150years what of the articles that
I came across was an articleabout genetic, genetic
counseling for fragile X, andthat was back in 1994.
(04:42):
That's scary, and I was kind of, you know, doing the math so I
was like, oh god, that's like 30years next year.
Yeah, yeah, so did you.
I think you said that yourfirst sort of career in genetic
counseling was general orprenatal, and then you sort of
went into cancer and then youwent into teaching.
(05:03):
Is that how it worked?
Janice Berliner (05:06):
Yes, the first nine and a half years, I want to
say, were largely prenatal,with some pediatrics sprinkled
into it.
Matt Burgess (05:15):
Okay and like it was really interesting reading
the abstract of that articlebecause technology has changed
so much and how we test forfragile X and what we know, and
you know how fast we're able totest.
It's amazing that you know likethings have changed and evolved
(05:35):
so much.
Janice Berliner (05:36):
Funny story I would love to Related to
technology.
I have what I think is a veryfunny story.
When I was a genetic counselingstudent at the University of
Michigan in the very late 80s,we had to do two student
seminars once it first year andone in our second year and we
(05:56):
weren't doing our own research.
So therefore we were presentingsomeone else's research, which
is, for anybody who's ever doneit, as an extreme challenge,
because then you ask questionsabout it.
I don't know.
And in my second year I did aseminar on the brand new no
One's Ever Heard of ittechnology of PCR.
(06:17):
And one of the people in myaudience because he was then a
medical geneticist at theUniversity of Michigan was none
other than Francis Collins.
And for your listeners whomight not know the name, he was
first the director of the HumanGenome Project and then the
director of the National HumanGenome Research Institute for a
very, very long time, juststepped down maybe six months
(06:38):
ago.
So when I tell people I taughtFrancis Collins about PCR, I
think that's hysterical.
Matt Burgess (06:45):
That is hilarious.
That's hilarious.
Sure, yeah, it kind of remindsme, you know, like I did genetic
counseling at university in2004.
So you know, that's nearly twodecades ago now and although I
loved the course, I think at theend I was so ready to get out
and work and I think by the timethe end of the course came
(07:09):
around, I had had enoughlearning and I kind of it's
really funny to say it out loudnow, it's a bit embarrassing,
but I remember thinking okay,I've learnt chromosomes, I've
learnt carrier type, that's allI need to know.
I've got no more room left inmy mind for this new thing
called an array.
Like it's too complicated, Idon't understand it, I won't
(07:31):
need to think about it.
It's kind of like, okay, I'vegot a job, I settled down, and
then it's like okay, I think Ido need to learn about this new
thing called an array, I thinkit'll be around for a while.
So it's kind of a similar thing.
Janice Berliner (07:49):
It kind of is.
But you know, when I graduated,there was, there were
chromosomes and, of course, andthere was DNA testing.
I'm not gonna graduate theStone Age, but there wasn't a
lot more than that.
I mean there were no microarrays and there wasn't PCR yet.
I mean there was, but not inreally common usage and we
(08:11):
weren't learning about polygenicrisk scores or like a million
other things that now we'retrying to teach our students and
we're thinking, oh, we neverreally learned this, at least
not in an academic setting.
In fact, we didn't even learnanything about cancer genetics
Part of the profession I spent20 years of my career working on
(08:31):
.
We didn't learn in schoolbecause it didn't really exist
yet.
I mean, fundamentally we knewthere was something hereditary
about a lot of cancers, but itwas in its infancy then, kind of
the way we look at psychiatricgenetics now, where you know we
know there's somethinghereditary and we can certainly
counsel families about risk, butwe can't do anything about it
(08:56):
without the molecular tools,right?
So we didn't have cancergenetics clinics.
We didn't learn about cancergenetics in our training.
So any of us my age or older,or even maybe five years younger
, who do cancer counseling havelearned it on our own on the job
which has been interesting.
Matt Burgess (09:17):
I think it goes to show the point that in genetics
we are constantly learning andyou know to be on top of our
game it's important to have thatongoing professional
development and things arechanging all the time and you
know it's important for us tokeep up with that.
You know I was going to say Iteach genetic counseling at uni
(09:37):
and you're actually my boss, soyou know that I was.
Janice Berliner (09:41):
I don't think of myself that way.
Just so you know we arecolleagues.
Matt Burgess (09:46):
One of the things I think about, or I thought
about last year, was oh, do Ineed to teach the students about
linkage?
And like, on one hand, I thinkit's important that they know
this process.
That used to be very, very,very important, but you know,
you can go years now in yourcareer and never have to discuss
(10:06):
it or understand it, and, yeah,it's interesting, it's true.
Janice Berliner (10:11):
You know there are certain aspects of our field
and medicine in general thatbecome antiquated fairly quickly
and you go back and you look atjournal articles, like you did
with the Fragilex article, andthink, okay, so this used to be
state-of-the-art and now it'salmost funny, it's sort of cute
that that's how we used to dothings and not anymore.
(10:35):
But you know, every lesson welearn makes the next lesson that
much easier.
So we can learn at I don't knowif it's an exponential rate,
but certainly at an acceleratedrate, because everything we
learn is the basis for newthings and makes it easier and
quicker and generally lessexpensive.
Matt Burgess (10:55):
Exactly less expensive than faster?
Yes, Right, so you edited agenetic counseling book about
ethical dilemmas in clinicalgenetics.
I know it's sort of during ouryou know, when we study genetic
counseling at uni, there's a bigcomponent that is about ethics
and morals and that sort ofthing, and I think it's
(11:18):
completely appropriate.
However, I was kind of thinkingback like day to day.
It's not like we have 40 hoursa week of ethical dilemmas as a
genetic counselor, but it'ssomething that we do need to
know about, and I was justwondering if you could tell us
how that book came about and howyou sort of picked which
(11:38):
chapters, and you know that sortof thing.
Janice Berliner (11:42):
I think this is an interesting story.
I had gotten a call completelyout of the blue one day from an
editor at Oxford UniversityPress who I didn't know.
Who said how did he find myname?
I think I was on the board ofdirectors of the American Board
of Genetic Counseling at thattime and I think that's how he
(12:04):
found my name.
And he said I've been at somegenetic counseling conferences
recently and genetic counselorsare avid readers but they have
nothing to read.
We're trying to sell books tothem, but there's nothing on
your field really to sell.
Would you be interested inwriting something?
And I was dumbfounded.
I said well, maybe.
(12:24):
What do you have in mind?
He said we would love for astudy guide to prepare students
for boards, which was kind ofcomical.
It's not exactly a book to read.
But I thought well, that'sfunny that you say that, because
I had actually written a studyguide years prior for the boards
.
That was simply based on myefforts at studying and my late
(12:46):
father's admonition that I'mputting so much work into
putting this together, I mightas well not be the only one to
benefit from it.
So I had put together a studyguide for three different cycles
of the exam and back then theywere only given every three
years.
So I did a first, second andthird edition in 1993, six and
nine I think it was.
So I thought, well, that wouldbe interesting, because I've
(13:09):
kind of done this before.
But because I was on the boardof the organization that created
the exam, I said I can't, thiswould be wholly inappropriate
for me to do.
Total conflict of interest.
He said so well, what would youlike to do instead?
Because I'd still like to haveyou write something.
I said let me talk to a coupleof colleagues, and I called a
(13:32):
genetic counselor, a colleaguewho I utterly respected and
adored, and said what do youthink about this?
She said, janice, I have fiveminutes to talk, but let's talk
this out right.
She said I think we need a bookon ethics and here are some of
the topics I think you should do, and I think, instead of five,
we probably talk for 10 minutes.
But in that 10 minutes we bangedout which chapters we should
(13:53):
have and, potentially, who couldwrite them, and then I took it
from there.
She said good luck.
And I took it from there and Icontacted all of these genetic
counselors, many of whom Ialready knew, and recruited them
to write their chapters andthen kind of cracked the whip to
make sure they all got done ontime so that I had time to edit
(14:14):
them.
So the only thing that I wrote,or I created, I should say, for
the book is the case examplethat we then used as a thread to
tie all the chapters together,so you don't have to read it in
any kind of order, but a familyis presented at the beginning of
the book and then each ethicalprinciple described in the
(14:34):
chapters relates back to thatfamily in some way.
So I created that and kept ontop of the chapter authors and
was the liaison back to OxfordUniversity Press OK and edited
it.
Matt Burgess (14:49):
Like it's interesting, as we were talking
before about fragile X in yourpaper and how it's kind of
comical now, but this textbookis about 10 years old but still
completely relevant.
And there's a chapter aboutdirector-consumer testing and I
think that's even more relevantnow.
There's a chapter aboutincidental findings and I think,
(15:11):
as genetic testing is becomingfaster and cheaper and more
complex and complicated, we'recoming across more and more
things that we weren't planningon coming across.
And then what is the ethicalthing?
Should that not be reported?
If it is reported, should wenot tell our clients?
(15:34):
But then, if it's written down,do we tell our clients or do
they want to know about that?
And how do we consent them forthat?
Yeah, I find that fascinating.
Janice Berliner (15:45):
I do too.
Matt Burgess (15:46):
Yeah Well, I recently went to a conference
and one thing that I hadn't evenreally considered was there was
a little, there was a sessionwhere the scientists were
talking about how they feltabout discovering things and not
reporting them, and as aclinician that orders genetic
(16:08):
tests, I kind of thought, oh youknow the lab people, they're
used to that.
You know, just don't put itdown, I don't want to know about
it, but you know, it doesn'tmatter if you know.
But then for them to actuallysay, well, actually this is a
burden for me as well and Ithought, oh, the scientists,
maybe they need like supervisionand they need to sort of come
together and talk about thesecases.
Janice Berliner (16:28):
So yeah, it was really interesting Point.
Yes, and I think you know weend up being somewhat siloed in
our lanes, right, you have theresearch scientists.
Then you have the laboratorypeople who are actually
physically doing the test butnot seeing the patients
connected to them.
And then we have the physiciansand the genetic counselors who
(16:48):
are actually physically seeingthe patients but didn't do the
research to find out how to dothat test in the first place.
It didn't actually implementthe test, you know.
And then you have the patients,who don't care about any of
that, except how does thisaffect my life and what do I do
with this information?
And so we act as the liaison,really, between the research and
(17:10):
the lab and the patient, but weare not the patient, right, we
don't actually go home with that.
I mean, some of us are, some ofus do actually have genetic
conditions, but it is adifferent lens to look at it
through, which is terriblegrammar, but I think you know
what I mean and that was part ofthe reason.
Actually, if I may segue, that Iwrote the novels.
(17:33):
That I did is in order to makegenetics a little more relatable
to the average person.
You know, you can pick up anovel and, yes, you're learning
something, but you're not beinghit over the head with it and it
doesn't necessarily apply toyou, but you can at least maybe
see how genetic disease affectsfamilies and their relationships
(17:55):
and the way they look at theirfutures and their health care
and their finances and theireverything that relates to it
that we think we know about asgenetic counselors but we don't
go home with it.
So that was kind of the idealto give you a way to kind of go
home with it.
Matt Burgess (18:13):
OK, perfect segue.
We need to talk about yourbooks.
And it's interesting becauseyou know we're genetic
counselors.
We could sit down and talkabout genetics with each other
all day long, you know, over acup of tea or glass of wine, and
that was one of the reasonsthat I started this podcast.
You know the mystifyinggenetics.
I think that laypeople like tosort of understand a little bit
(18:38):
about genetics and I hope thatyou know people are able to
listen to these podcasts andunderstand what we're talking
about and take things away.
But I know that the geneticcounselors love it as well.
But, yeah, so it's interestingto hear that that was sort of
one of the reasons that youstarted writing your fiction.
So the first book I think thefirst book is my favorite.
Janice Berliner (19:02):
So it's probably mine too.
Matt Burgess (19:05):
Are you allowed to have favorites as an author.
Janice Berliner (19:08):
I don't know.
It's kind of like picking afavorite child you love them
equally for different reasons,or something like that.
Matt Burgess (19:16):
So your first book is Brooks Promise.
When I was thinking about this,I feel like with your second
book, in Good Conscience, I cantalk about it without giving
things away.
But with Brooks Promise I feellike I have to be really careful
what I say, because I don'twant to give anything away, but
so how there are a lot ofspoilers in that one for sure.
(19:38):
How do you explain or describeBrooks Promise?
What is it?
What's it about?
Janice Berliner (19:46):
I do it very simply and it really probably
doesn't do the book justice intotal, but I simply say that
it's a story of a young couplewho wants to have a baby, has
some difficulty at first doingthat, but through in vitro
conceives a pregnancy and whenthe baby is several months old
(20:06):
they find she has a fairlysignificant failure to thrive.
That at first the pediatricianisn't too concerned about and
then after a while decides yeah,maybe this baby ought to see a
geneticist who ultimatelydiagnosis the baby with a pretty
serious metabolic disorder.
And in trying to figure out howdid this happen to them, the
(20:30):
couple ends up uncovering allsorts of repressed memories and
secrets in the family thatpretty well threatened to pull
the whole family apart andnearly do, and there's a lot
more to it, but that's the basicpremise in mind.
Matt Burgess (20:49):
Excellent and one of the things I sort of was
interested in.
Like I really enjoy reading.
I like reading fiction.
I don't really read that muchnonfiction, apart from journal
articles and that sort of thing.
When you are a writer, can youremember everything in the book,
like because I remember I readit but then I've forgotten a lot
(21:11):
of details.
But is it sort of like, do youremember all of the details of
the book?
Janice Berliner (21:17):
I'm sure I remember more than you do, not
only because I wrote it to beginwith but because I've read it
so many times in the editingprocess.
But there are certain things,like I did a book group last
night about In Good Conscience,the second novel, and we were
talking about the maincharacters, two siblings, and I
thought, darn it, I don'tremember their names.
(21:38):
They were pretty unceasingcharacters and shoot, I don't
remember the names that I gavethem.
And somebody said somethingabout a character named Kevin
and I was, oh yeah, kevin, whatabout him too?
Because he was not a huge partof the story.
I don't think he wasunimportant, but he just wasn't
that big a part of the story.
So when I think about the bookI don't, that's not the first
(22:00):
place my mind goes so no, Idon't.
I don't remember every singledetail and sometimes when I do
reread something I think, oh,wow, like I can make myself cry
by reading my own writing.
Which is just weird.
It's kind of nice, like, yeah,I wrote that and it still makes
me sad or frustrated or angryCute.
Matt Burgess (22:23):
Oh, that's funny.
Oh, so we're going back toBrooke's promise.
You know, there's not a lot offiction that I read where there
are genetic conditions in there.
And then, you know, I hardlyever see genetic counselors sort
of represented in books or inTV shows.
(22:45):
What's that?
Oh, Gadica, I remember Gadicaand the genetic counselor was a
black man and I thought, oh myGod, like that's amazing because
most genetic counselors arewhite women.
So he's like I was like, oh,that's like me.
But do people in genetics giveyou good feedback about your
(23:10):
books and is it different topeople that don't work in
genetics?
Janice Berliner (23:17):
Well, it's different in the sense that they
know where I'm coming from inwhat I'm writing, and so it
means, in some ways it meansmore to me, you know, because
you don't see a lot of geneticcounselors represented in books,
and so when I saw it the firsttime I saw it represented in a
(23:38):
book was in one of my veryfavorite books called Inside the
O'Brien's, which is written byLisa Genova, who wrote Still
Alice and a bunch of other booksabout neurologic disorders, and
she was one of my biggestinspirations for writing.
I thought perhaps I could dofor genetics which she did for
neurologic conditions.
(23:58):
Anyway, she had what you and Iwould think of as a genetic
counselor.
In her book she called him asocial worker, which a little
irritated me, but the sessionthat she portrayed was really
very good and really showed thisperson also male, by the way in
a very good light, so I washappy about that.
(24:25):
When I hear back from geneticcounselors who've enjoyed my
books and say that it'sauthentic to them, very, very
meaningful.
The most powerful thing, though,is when I hear from a patient,
from somebody who says Iactually have, for example, a
family history of a hereditarycancer syndrome, and it rings
(24:47):
true to me and I heard that lastnight in this book and I have
to tell you that means the world, because it's hard to know.
You know, when we're counselingour patients, we think we're
being empathic, we think we'rebeing understanding, we think
that we are listening activelyand really kind of get into the
meat of what the patient means,but we don't always know that
(25:10):
we're actually succeeding indoing that.
So when I feel like I wrotesomething that speaks to
somebody in a situation likethat, I think so.
I did listen to my patients,you know, maybe not every one of
them I'm not saying I dideverything perfectly certainly
not but that I gathered enoughinformation over the years that
I was able to write somethingthat feels authentic both to the
(25:31):
genetic counselors and to thepatients.
It's awesome.
Matt Burgess (25:34):
Yeah, I would think that that is the hardest
thing to do being authentic.
It kind of reminds me I meanthis is a bit of a segue, but
with the new Sex and the City atthe moment I don't know if you
watched the old series and thenI did.
Janice Berliner (25:51):
I watched the old one, not the new one.
Matt Burgess (25:53):
The new one.
It just doesn't feel authentic.
You know, like I think we alllove the characters, that we
wanted them to come back, andthen you watch it and it's like,
oh okay, it's not authentic.
So I think that I mean thatauthenticity is really hard and
it's.
You know, it's amazing whenyou're able to do that.
(26:14):
You know, as genetic counselors, it's a stressful job and you
know we're empathic and it'sgood to be there for our clients
.
However, you know it's notabout us and for a lot of our
clients, it's the worst thingthat they'll ever go through or,
you know, one of the mosthorrible sort of processes.
Janice Berliner (26:35):
So, yeah, I think to be able to write Right,
and for us it's almost, youknow it's Tuesday.
I mean it doesn't mean that wedon't care about our patients.
It's just that, yes, we're hitby it a lot and we have to find
ways to care for ourselves inways that we can, you know,
maybe not take it home.
Matt Burgess (26:52):
Yeah, I also loved Inside the O'Brien's.
It's about my favorite of thegenetic condition that I like
working with the most Huntingtondisease.
I really like fragile X as well.
I like cancer, but yeah, Ithink Huntington disease is
probably my favorite conditionto work with, even though it's
(27:14):
sort of a horrible condition andas someone that if you can have
a positive impact on a family.
Janice Berliner (27:22):
That's what it's all about, because this
family is going to go throughtheir Huntington whether you're
there or not, but if you canhelp them through it and make it
an easier process, it'sfabulous.
So this woman in our book grouplast night who is part of a
hereditary cancer family saidthat she has a very, very large
family and they've all beenfollowed by one genetic
(27:44):
counselor over 30 years and shesaid we would have made it
without that genetic counselorand it was just.
It was really sweet for me tohear.
I asked her who it was.
I do know the person not well,but for a long time and it was
just really gratifying to thinkthat she had made such a
difference in the lives of thesefamily members.
Matt Burgess (28:04):
Yeah, that's amazing.
I was thinking about the issuewhen we quit a job and we move
on and leave our families behindlike it's such a privilege and
an honor to be able to work withthe same family, sort of in an
ongoing way.
Track Jean has designed anelectronic health record for
(28:25):
genetics professionals.
It includes pedigree drawing,demographic data, genetics
information, risk tools andsophisticated reporting, all
designed with the clinician inmind.
It integrates within otherclinical genetics software,
databases and hospitalinformation systems to maintain
accurate patient records.
Track Jean has an experiencedteam who have been working in
(28:48):
the clinical genetics industryfor over 15 years, and you can
request a demo for free.
Go to trackjeancom Again.
That's trackjean In your secondbook In Good Conscience.
So it's about a young man.
(29:08):
I feel like I could explainthis book Please.
The wedding Too much away.
But you know he's good looking,he's successful, he's an actor,
he's doing really well.
But then he's diagnosed withcancer and I guess it's probably
not giving too much away thatmaybe there's a genetic
(29:31):
component to his cancer.
But is that sort of how youdescribe this book?
Janice Berliner (29:37):
Yes, yes, I do.
I say it's about a young,successful actor who's suddenly
very ill and one of the nursesin the cancer center where he's
being treated not his nurse, butone of the nurses looks in his
chart simply because he's famousand she's curious, which we all
(29:59):
know is the wrong thing to dobut she sees some things in the
chart that make her think thatthis could be something
hereditary, and she goes to meetwith him to try to explain this
to him, and he is quitenaturally, I rate, because I
don't even know who you are.
What are you doing?
Looking in my medical recordsand coming to talk to me about
(30:20):
it?
I didn't ask you to do that,but she is very involved in this
in her own mind, and you knowyou, as a reader, start to try
to wonder, wow, start to wonderwhy is she so invested in this
person?
She doesn't even know, and youknow you come to find that
there's somebody in her past whoactually suffered from the
(30:48):
clinical effects of a hereditarycancer syndrome, didn't ever
know about it and would havebenefited so much if she had,
and so that's why this nurse isso stuck on this topic.
And, long story short, thefamily does eventually come
around to understanding why andhow important it is to have that
(31:09):
kind of information, but notbefore this nurse goes through a
whole ethics board violationhearing because she did violate
his privacy and very easilycould have lost her job and even
perhaps her nursing licensebecause of it.
Matt Burgess (31:26):
And it sort of highlights the issue of duty to
warn.
And in genetic counseling oftenwe diagnose people but it's not
an isolated thing, it's sort ofwithin their familial context
and obviously that means thatfamily dynamics come into it.
And in a previous podcast witha genetic counselor from
(31:49):
Australia, laura Forrest, shewas an author on a paper that
looked at genetic counseling andpeople sharing results through
social media and there was aquote.
It was something like I don'ttalk to my sister but she needs
to know, and the lady was ableto reach out on Facebook and let
(32:13):
her sister know about theresult in the family and it's
like, oh, families arecomplicated.
Janice Berliner (32:19):
Families are very complicated and when we
think about duty to warn,sometimes it's not that the
patient doesn't want her familymembers to know, it's that she
doesn't want to have to talk tothem For whatever reason,
there's a rift.
So if the genetic counselor orthe oncologist, or whoever it
might be, is able to say hey,with your permission, I will
(32:42):
reach out to this person in thefamily.
But can you give me a littleidea of what kind of person this
is Like?
Is she likely to be angry?
Is she likely to be scared?
Is she likely to lash out, like, gather some information and go
at it that way?
But it isn't easy.
We try to I hate to use theword convince, but try to
(33:03):
explain to our patients why it'simportant for their family
members to know.
But my idea for that book inthe first place was the issue of
confidentiality versus duty towarn, and when I told people
initially about it they werelike, well, that sounds really
dry and boring.
But no, no, no, no, I won'twrite it dry and boring.
Matt Burgess (33:24):
Excellent.
So Rook's Promise came out in2019.
In Good Conscience came out in2021.
It's now 2023.
Hi, does that mean you haveanother book of the horizon?
Janice Berliner (33:42):
I do, but not.
You know, this seemed to be aSeptember, october kind of thing
.
It's not going to be ready forthat, unfortunately.
My job, as you well know, isbig and busy and takes a lot of
time, so I have not had the timeto devote to the next one.
I've written nine chapters sofar.
I don't actually know how manyit's going to be, because I've
(34:05):
only outlined maybe 10 chaptersahead of where I'm currently
working, although I have an ideaof where I'm going in the end.
Certainly this one's going tobe about familial psychiatric
illness.
Oh interesting, which I find avery interesting topic and
somewhat near and dear to myfamily history.
So it's important to me to talkabout it and my main two goals
(34:28):
with this are, first, to try towork with others to destigmatize
psychiatric illnesses to someextent, to make everybody
realize everyone has thesethings in their families,
whether they realize it or not.
You didn't do anything to causeit.
You couldn't have done anythingto prevent it.
But there are things you can doto mitigate it to some extent.
(34:51):
And I also want people tounderstand that what is
inherited is not the specificdisorder but the predisposition
to psychiatric disorders as ageneral topic.
So somebody doesn't pass onschizophrenia, but what might be
passed on is a propensitytoward psychiatric illness that
(35:13):
may take many different formsand different members of a
family.
So you may have one person whohas schizophrenia, one who has
bipolar disorder, one who has agambling addiction and one who's
anorexic, something like that.
Much like autoimmune disordersright, where you might see a
family where there's many moreautoimmune disorders than you
might expect just based onstatistics alone.
(35:34):
But they're not all the same.
Matt Burgess (35:36):
Yes, yeah, I guess we sort of refer to that as
multifactorial inheritance.
So there's genetic component,but environmental and whether if
we stay healthy or if we takedrugs or abuse alcohol and all
of those things can affect theoutcome.
(35:58):
So, yeah, that sounds veryinteresting and I guess in the
last few minutes I think we needto talk about our dogs.
Oh, okay.
Janice Berliner (36:10):
Always happy to do that.
Matt Burgess (36:13):
So I've got a dog called Banjo, Since I've never
had a dog before and now I'mobsessed.
And you have a dog calledWinston, and Winston and Banjo
are about to have their firstplay date.
Yes, very excited.
Janice Berliner (36:30):
Yeah, the one time I met Banjo, you dressed
him up, you showed me hisHalloween costume and you look
like a little hot dog and it wasthe cutest thing I ever saw.
Matt Burgess (36:39):
Yeah, I mean dressing up in costumes is not
his favorite thing to do, but itwas good to dress him up.
Janice Berliner (36:48):
Every game day we put Winston in the University
of Michigan Jersey and he'sokay with it.
Okay, he has his little go bluecollar around his neck all the
time.
He is a big Michigan fan.
Matt Burgess (37:00):
Do you think he identifies as a person from
Michigan?
Janice Berliner (37:05):
I hope not, since he's never been in the
state, but he's a good fan ofthe team basketball and football
.
Matt Burgess (37:14):
Oh, that's good, Because, yeah, banjo is about to
become an Aussie doggy.
We're taking him back toAustralia.
However, he is Amish.
He was actually born inPennsylvania, lancaster County,
so I'm not quite sure how heidentifies, but he's becoming
more Australian every day.
Janice Berliner (37:32):
Well, Winston was born on a dairy farm in
upstate New York.
For all I know, he's Amish tooGood and dying.
Matt Burgess (37:39):
Lovely Okay, before it gets any more
ridiculous, maybe we should stopthere.
Janice Berliner (37:46):
Well, ridiculous is our middle name,
Matt.
Matt Burgess (37:48):
Thank you so much for demystifying genetics with
me today.
I am going to put the links toyour fabulous books in the show
notes and yeah.
Janice Berliner (38:01):
I wish you and my website as well,
janisforlinnercom, if you'relooking for more information,
blog posts and things like that.
Matt Burgess (38:08):
Excellent Sounds good, so I wish you good luck
writing your third book.
Thank you All the best.
Janice Berliner (38:19):
Thank you.
Same to you.
We will miss you when you moveback to Australia.
Their gain is our loss.
Matt Burgess (38:24):
Thank you, I'll still talk to you.
Janice Berliner (38:27):
I hope so.
Hopefully you'll still workwith me too.
Matt Burgess (38:31):
Sounds good, thank you, bye-bye.
Janice Berliner (38:34):
Thank you Bye.
Matt Burgess (38:36):
So that's our show .
I'd like to thank Janis forbeing a lovely podcast guest
Always fun to chat with her.
I would also like to thankTrack Jean for sponsoring this
episode and, as always, a bigthank you to my producer, omiya.
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