Lauren Giannetti-Safaza, a genetic counselor from New Jersey, shares her journey transitioning from clinical practice to industry and discusses the evolution of genetic counseling roles. Throughout the conversation, she offers insights into balancing professional responsibilities and personal experience as a pregnant genetic counselor preparing for childbirth. • Clinical burnout as a catalyst for moving to industry positions • Shifting perceptions of industry roles from "the dark side" to valuable career paths • Potential for broader patient impact through industry versus direct clinical care • Balance between job security in public health versus higher compensation in industry • Implementing gender-inclusive care in genetic testing companies • Evolution of non-invasive prenatal testing (NIPT) and the rise of "gender reveal" culture • Point-of-care genetic testing models in cancer care • Need for genetic counselors to support clinician-ordered testing • Balancing ideal practices with practical realities in genetic healthcare delivery
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Episode Transcript
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Matt Burgess (00:01):
This is Demystifying Genetics.
I am your host, matt, and I ama genetic counsellor in
Melbourne, australia.
I have a genetic counsellingand testing company called
Rosalind Genetics and I seepatients from across Australia.
I am passionate about clinicalgenetics.
In this podcast, my guest isLauren Giannetti-Safaza.
(00:23):
Lauren is a genetic counsellorin New Jersey and in this
episode we start by discussingworking in industry.
Enjoy, hello Lauren, andwelcome to Demystifying Genetics
.
Lauren Giannetti Sferraz (00:42):
Thanks so much for having me, matt.
How's it going?
Good, good, you know I amwaiting any day for my child to
pop out, so that's exciting.
So, yeah, I am on, I guess,maternity leave at the moment.
Matt Burgess (00:58):
Well done, congratulations.
It's funny because as a highschool student I thought, you
know, I kind of left everythingto the last minute and I thought
, as I matured and you know, Iworked my way through university
and different degrees that Iwouldn't keep leaving stuff to
the last minute.
(01:18):
But I feel, like me and you,like, your baby is literally due
today.
We kind of have left it to thelast minute, but I'm so glad to
have you thank you so just um,give me a little signal or let
me know, like if you know yourwaters break or we need to, like
, get you to the hospital thatwould be phenomenal.
Lauren Giannetti Sferrazza (01:39):
I'd be very happy if that happened.
I'll just I'll just stop youand say, hey, I got to go.
Matt Burgess (01:44):
Yeah, I mean, I would appreciate to finish the
podcast, but yeah.
Lauren Giannetti Sferrazza (01:49):
Just finish it in the car on the way
to the hospital.
It's fine, it's really fine.
Matt Burgess (01:53):
Oh look, I've got some really interesting things
to talk to you about today.
I mean, maybe just to startwith, I know that in the genetic
counseling field there are youknow, it's mostly women.
That that's not a big surprise,and one of the things that we
sort of discuss sometimes is umtransference and
(02:15):
counter-transference when uh,we're pregnant.
It has been pregnant and beinga genetic counselor umor sort of
been interesting or like raisedthose kind of issues that we
sort of knew.
But you're experiencing?
Lauren Giannetti Sferraz (02:34):
That's such a good question.
Yeah, you know I and, to becompletely transparent, I
actually did fertility treatment.
So I really, you know, was veryscience, but this pregnancy is
very science-based to begin with.
So I think it was interestingto be on the other side of the
desk.
That's kind of how I viewedmyself.
(02:55):
I used to work with thisfertility center.
I used to be the geneticcounselor there, so it was
interesting to be on the flipside and I kind of tried to just
let things happen and not betoo type A like I usually am,
like a lot of us are.
I did my carrier screening manymoons ago, so that was taken
(03:18):
care of and I tried to just letthe professionals do their thing
and I kind of took a step back.
I did have a really interestingkind of session this morning,
not with a genetic counselor butwith an ultrasound tech, where
I went in and she made a commentand I don't think she realized.
(03:40):
I heard her where she's like,oh, what's that?
And my ears pricked up, youknow as a patient and as a
genetic counselor, and I see hergoing over and over and I was
like, okay, she's looking at thebrain.
What is she looking at?
How is she measuring?
So it's there's always going tobe that bleeding into your
personal professional.
(04:00):
Another really interestingexample was I was doing a fetal
echo and the woman who was doingthe echo was a breast cancer
survivor and she started askingme what do I do for work?
And I'm like, oh man, you knowI try really hard not to.
I try hard not to, you know, bepreachy or oh hey, did you do?
(04:20):
But it just kind of naturallycame up and so we talked about
how she had her genetic testing.
But she only had, you know, theold school BRCA one and two.
I don't even know what if shehad full rearrangement testing.
And so, yeah, we had a little.
I tried to keep it short andsweet, but when you're going to
the doctor, that often I meanit's just going to happen that
(04:42):
these things come up.
Whether it's about your ownhealth or somebody that is
taking care of you, bringsomething up.
So definitely was interesting,definitely interesting.
Matt Burgess (04:53):
Oh, that's funny.
Like I don't actually identifyas a type A person.
I think I'm much more type B,but because a lot of people that
we have as clients have no ideawhat genetic counselling is or
they don't know what to expect,I really feel like a big part of
my job is like I've got you, Iknow what we're doing, I've got
(05:15):
the session planned in my mind,like you just have to trust the
process and I will guide you ina very patient-centered way.
But it must be interesting tosort of be on the other side and
go okay, well, you know what,like I'm just going to trust the
process.
I don't actually have to likelead this and you know whatever
(05:38):
needs to happen will happen.
So, yeah, well done.
Lauren Giannetti Sferrazza (05:43):
I tried.
I mean, you know, of course Ialways slipped in.
You know, when I was getting myfetal echo, they're like, oh
yeah, we do this.
And I was like I know why we dothis and I know what it says
and I can read them.
You know the echo.
They're like oh OK, come intothe counselor Like, oh OK, you
know they get really excited.
So I try, try not to pull outthat card very often, but I just
(06:03):
.
Usually it's when they'reasking me like you reported a
family history of so-and-so, andthey start going and I'm like,
hey, so I'm not trying to berude, but you really don't have
to waste your time going throughall of it Like I'm a genetic
counselor.
We got, oh okay, great, youknow.
Matt Burgess (06:18):
So I tried to as much as I could just let them do
their thing without getting toocrazy.
Yeah, so one thing that I'dreally like to talk to you about
today is working in industry.
You know, I guess when I wasliving in America and I worked
(06:39):
in industry, one of the thingsthat actually really helped me
was listening to you on yourpodcast, or a podcast that you
were involved with.
You know, when I was goingthrough Spotify looking at all
of the past episodes, you wereactually involved with quite a
few.
How did you find that process?
Lauren Giannetti Sferrazza (07:01):
Oh, yeah, I'm trying to think of the
because I do a lot of differentstuff.
Yeah, I'm trying to think of thebecause I do a lot of different
stuff.
I kind of throw myself into alot of things, but I know my
company for a long time had acouple of podcasts that we were
doing with our chief medicalofficer, tj Slavin, and so that
was really cool just to kind oftalk about different topics and
(07:21):
try to get a feel for, you know,what does somebody that doesn't
work in industry, what do theyneed to know about this topic,
or what's really important?
Or if you're seeing this typeof result, how do you then
translate it into clinicalpractice?
So that, I think, is reallyinteresting and it kind of leads
to this idea that working inindustry doesn't mean you have
(07:45):
one job and one job only.
It's really fluid and you canmake it what you want it to be.
So it's not just I work forthis company and this is my one
job.
You know you really kind of cancreate a lot of opportunities
for yourself.
So I really loved doingpodcasts and doing webinars and
hosting tumor boards, and so Ikind of threw myself at those
(08:07):
opportunities when theypresented.
Matt Burgess (08:11):
It's not something that we usually spend a lot of
time on as genetic counselingstudents.
You know, it's like we kind oflearn.
Lauren Giannetti Sferrazza (08:19):
Or at all.
Matt Burgess (08:21):
Yeah, and I remember when I was a student
some of my classmates had sortof genetic counseling kind of
semi-related or adjacent jobs,whereas I was a salesperson at a
(08:41):
large electronic store and Ireally felt like it was a
disadvantage, whereas inhindsight I think being a
salesperson actually gave meskills that I used as a genetic
counsellor Absolutely.
And you know like I reallyliked the CMO who you worked
with.
He was obviously very sort ofknowledgeable and charismatic,
(09:05):
but when I listened to you twotogether I thought it was really
cool how I thought you were theone that made it more relevant
or you would bring it back ontopic and it sort of reminded me
of like in clinic, when geneticcounselors and geneticists work
(09:26):
together.
Lauren Giannetti Sferrazza (09:27):
Yes.
Matt Burgess (09:27):
And like because, as a new genetic counsellor, I
remember thinking what do I haveto add to this?
You know they're the doctor,They've got a medical degree.
Like, what am I adding to theprocess?
And you know, listening to thepodcast with you and TJ, it was
like, ah, I know exactly whatthe genetic counselor is adding
and, like, you're making this amuch better conversation.
Lauren Giannetti Sferrazza (09:51):
Yes, well, thank you for that.
I appreciate that.
I loved working with TJ.
That was kind of our dynamic,no matter what we were doing
together.
You know, I think somebodythat's just so wildly what we
were doing together.
You know, I think somebodythat's just so wildly talented
and intelligent.
Sometimes they get lost intheir own thoughts and so it was
kind of my job to bring it allback and say, okay, yes, great,
(10:13):
excellent points.
How do we now apply it?
Like, what does this actuallymean, giving that practical
application of whatever we'retalking about?
So I think about that too.
A tumor board I mean we had somereally heavy hitter national
thought leaders on there and inmy head you start getting
imposter syndrome.
(10:33):
I'm like who the heck am I?
I mean, I'm just this geneticcounselor.
This person is on X amount ofclinical trials.
They're the head of this reallyimpressive academic institution
and running all of thesedifferent things.
But I think that, like you said, we have a really unique skill
set and we have different skillsthat are transferable from
(10:56):
other positions that we've heldor whatnot.
So I think that it's beenreally interesting just to see
where you put your passions, youlet your passions drive you and
then how you kind of figure itout within your role.
Matt Burgess (11:11):
And.
I guess, that passion that youhave in industry?
Was that something that youalways knew, that that was sort
of the area that you wanted toget into, or did it sort of
evolve after?
How did that kind of take place?
Lauren Giannetti Sferraz (11:28):
That's a really great question.
I started in clinical practice.
I love patient care.
That's why I became a geneticcounselor.
I love genetics.
I knew bench work was not mything.
I did evaporate my gelelectrophoresis so I just was
not good at the lab.
So I was like, okay, this isnot going to work for me, but I
(11:49):
love talking to people, I loveadvocating for patients.
So I did that for a while.
I did as I mentioned.
I worked with a fertility centerand I got very burnt out.
I was seeing nine 10 patients aday.
It was highly emotional.
I was on call all the timebecause these fertility patients
you know things can change witha snap of your fingers.
(12:11):
So they were wonderful, just alot for a brand new grad.
And so I did about four and ahalf years and had a lot of
friends that were working at thecompany I currently work at and
I had some hesitancy aboutgoing into industry.
For me it was like, well, am Inow just not doing what I set
(12:32):
out to do?
I want to be there for patients, I want to be a patient
advocate.
How do I do that?
Working in industry and bylistening to other people that
worked in industry.
I was really impressed by theamount of people they were able
to impact versus my directimpact was, however many
patients I was seeing and that'skind of it.
So it's very small versus anindustry.
(12:54):
You impact potentially millionsof patients, especially if
you're working in like payermarkets or you're helping to
change guidelines.
You know that kind of thing.
So I never saw myself inindustry.
There was an opportunity thatpresented itself.
I felt like it was a good fit.
I was ready to kind of removemyself from direct patient care
(13:16):
and I've never regretted thatdecision that I made.
And it's interesting because alot of students so we have a lot
of students that rotate throughI'm still involved in a lot of
different programs.
They from the get-go kind of say, hey, I think I want to
actually be in industry.
I don't know that.
I want to do direct patientcare and I'm looking at the date
now I graduated oh my gosh,like over 10 years ago.
(13:39):
It's just crazy to say that wasnot an option for us.
It was like you go into clinicand you do prenatal or peds.
There was maybe one or twocancer jobs at the time, but it
just it was not.
It was not positive.
If you went into industry youwere looked down on that.
(13:59):
Oh, you're not giving back toour community, to our patients,
and that's just so different now.
So I had, I think, kind of atraditional way of getting to
industry.
If you're somebody that's of mygeneration nowadays, I'd say,
like for the past I've seen achange, maybe four-ish years.
We've seen more students goingright into industry because they
(14:21):
have industry rotations.
So they know what it is, theyget it, they say this is it,
this is what I want to do, andwe're happy to hire new grads
too.
So that's kind of my story.
Matt Burgess (14:33):
You bring up a really interesting point.
Like it's something that Ithink about, especially, you
know, my involvement withteaching genetic counselling
students, and the option, or,yeah, the option of going
straight into industry.
Like I don't know if I'm just abit old-fashioned or a purist,
or but I kind of think, oh, like, my advice is, usually do your
(14:59):
time clinically, like, do yourtime, yes, like a public
hospital, like I think, if youlike, if you were kind of um
designing like the perfectcareer path, I think you know,
maybe two years in a largepublic hospital, get experience
in many different areas, andthen sort of go in and I don't
(15:20):
know, like I sort of questionmyself and I think you, you know
, is that the best way?
Like you know, and why are we?
Why do I think that?
And, you know, if you do gostraight into industry, is that
a disadvantage?
I don't know, it's stillsomething that I think about.
Lauren Giannetti Sferrazza (15:39):
I think about it the same way too
and I'm of the same kind ofmindset of.
You know, get your stripes, doyour time.
It sounds like a jail sentence.
Do your time, get your streetcred.
You know.
I think it helps, depending onyour role, because right
Industry doesn't mean you'rejust.
I'm an MSL manager, a medicalscience liaison manager.
(16:00):
My team supports people thatare ordering genetic testing.
So it does help to haveclinical experience with that
role and people will look to youmore if you've had clinical
experience.
But if you're in a role amarketing role or payer markets
role, or your direct patientsupport, you know, having
(16:21):
clinical experience may or maynot really be beneficial or they
don't really care.
It's hard because it is thatbias I think that you and I have
it A lot of people have of.
Like I probably would lookfavorably on somebody that has
that experience.
I mean, I just hired, I justhad added somebody to my team.
I'll probably be hiring againand again and again and I always
(16:44):
look for somebody with clinicalexperience because of the role
I'm trying to fill.
So I think it's.
It depends on, I guess, whatrole the person's trying to fill
.
But I do think that there'sthat mentality of a couple of
years under your belt.
Then come into industry so thatwhen you know different people
have questions, you could say,oh, this is what I used to do.
(17:05):
Or hey, I can feel your pain, Iget it.
I understand how challenginginsurance is.
Does that mean somebody withoutclinical experience would be
like a poor candidate?
No, there are really greatpeople that rotate through.
They do a great job.
So I'm trying to get over myown biases with that, especially
as a hiring manager, butdefinitely the role that that my
(17:29):
team has.
We look more for people thathave actually like five to eight
years of clinical experiencebecause we have a pretty highly
successful, highly educated,experienced team.
So you and I are on the samepage with that.
I'm trying to get over it.
Matt Burgess (17:44):
Well, I mean, it's good that you sort of are able
to reflect on it and think aboutwhether that's the best way
forward or not.
I guess one thing that makesAustralia and New Zealand sort
of different from America isit's much harder to become board
(18:05):
certified in Australia ifyou're not going through a
clinical pathway.
Yeah, yeah, like in America,you see the board exam and if
you pass you're board certified,whereas over here, yeah, it's
sort of like a portfolio and youneed to have cases and clinical
(18:26):
hours, and I think it's thesame in the UK.
Lauren Giannetti Sferrazza (18:29):
I had somebody that was moving to
the UK and I talked to her about, you know, are you still going
to maintain what you have donehere?
Because here's different If youmove back, it's a very
different credentialing systemand it's a lot.
I mean, I give everybodyoutside of the US a lot of
credit because it's a lot ofwork.
I mean, it's a lot of work tomaintain what, what you're doing
(18:55):
and get that certification.
Versus us it's like, oh, justpass an exam, get your CVU,
which is a big deal, I'm notdownplaying that, that was hard
too which is a big deal, I'm notdownplaying that.
That was hard too, but it'sdefinitely not as painful.
Matt Burgess (19:08):
I think, just kind of reflecting on what I've
heard about, you know, outsidethe US, and I think you know one
of the things that influencesthat, especially in the United
Kingdom and Australia, is thefact that we have national
healthcare systems.
So genetics and you know,clinical genetics is really
based in public health andpublic hospitals.
(19:32):
So, and that's not so much thecase, if at all, in the United
States and one of the thingswhat I'm sort of leading up to
is I wanted to talk about thatidea, or this concept that most
of us in the genetic counsellingindustry understand, of going
(19:53):
to the dark side.
You know, like working inindustry.
It's something you know as anexperienced genetic counsellor
who lived in America and thenworked in industry and then now
I'm back in Australia.
I feel like we look to ourfriends and colleagues in
(20:16):
America and what you guys havedone, you know we're sort of a
little bit behind, so we seewhat you have done.
You know we're sort of a littlebit behind, so we see what you
have done, and there are lots ofopportunities for genetic
counsellors in industry whereaslike, probably I would say like
95% of genetic counsellors inAustralia work in the public
health system, so there's not asmany opportunities.
(20:39):
But there really is thisfeeling that you're sort of
going to the dark side.
Let's talk about that.
What do you have to say aboutthat?
Is that something that you kindof feel or have experienced?
Lauren Giannetti Sferrazza (20:54):
I definitely experienced it Again.
Like I mentioned, I graduatedover 10 years ago.
Where industry jobs were, theywere there but they weren't as
favorable to take.
And when, um one of my friends,uh, actually went right into
(21:15):
industry from school, um one ofour teachers and assistant
program director at the timesaid oh wow, you're going to the
dark side.
And just to hear that fromsomebody that's mentored you,
you're like ooh, that's kind ofa running joke for anybody that
works in industry, because it'skind of like okay, that was the
(21:37):
sentiment many moons ago.
It has very much changed,especially with kind of the new
mentality.
I think students are way moreopen-minded nowadays, especially
with kind of the new mentality.
I think students are way moreopen-minded nowadays, especially
with getting clinical hourswith labs so that they see what
it is, you know.
I wonder if that mentality ofgoing to the dark side is, you
(22:00):
know we're working forfor-profit companies and we're
making better salaries.
It's hard because I never hadthat sentiment, so I don't know
where exactly it comes from.
But I think that people thatgraduated prior to me, like that
, have 20 or 30 years ofexperience in the field.
Maybe they still have kind ofthat kind of uninformed opinion.
(22:24):
I do feel like it isn't as muchhappening because we've seen so
many more people come fromclinic moving over to industry.
Even when I have conversationswith people in clinic, I tell
them hey, listen, you knowyou're burnt out like go to
industry, you still can impactpatients, you still can do what
(22:46):
you're doing but be moreefficient and you're not going
to want to cry every time youleave work because you have this
many charts to finish andyou're not getting the support
from the hospital system to hireanother person.
I mean, industry is not perfect.
It's a lot of dollars and centsso you have to be business
savvy and kind of get it.
(23:07):
But yeah, it's, theconversation has changed so much
.
But yeah, the people peopledefinitely questioned me when,
when my transition happened,especially with the company that
I work for, and people werelooked at me and they scratched
their head.
They said, okay, well, I feellike I trust you, so like, if
you're going to this company,you know maybe I need to think
(23:28):
again about industry and thiscompany and the credibility, and
so I think the more people thattransition into industry and
we've all made reputations,we're credible, we're.
We're all genetic counselors.
We all came from the same place.
You know that mentality startsto shift, but definitely an old
school mentality still happens.
Matt Burgess (23:50):
And I guess, like anything in life, there's
positives and negatives.
And especially working in publichealth.
You sort of once you're in it,you know there is job security
there, like it is, you know likeit's almost a job for life,
(24:12):
whereas, yeah, you know, one ofthe disadvantages of working in
industry is that, um, and youknow, something that we've seen
and I've sort of experiencedpersonally was um the layoffs
that can happen and, you know,restructuring of companies and
that.
But you know, you mentionedsort of reimbursement or you
(24:34):
know, like salaries and stuff,and sometimes, like I realized
that some of the MSLs or youknow people working in industry
were probably on double whatpeople in clinics were on, and
it's like oh.
I don't know whether this issustainable, but you know there
(24:55):
are huge benefits and it can bereally interesting in your
career progression to sort ofspice it up and change things.
Lauren Giannetti Sferrazza (25:06):
I agree, and I do think you make a
very good point, that some ofthese public health roles,
clinical roles.
Usually you don't see peoplegetting furloughed or laid off
from clinical jobs.
I mean because they're so slimto begin with.
Unfortunately they're not wellpaid.
We all know that.
I mean you look at theprofessional status survey.
(25:27):
It's gotten better, but it ispathetic.
The amount of money thatgenetic counselors are making in
clinical practice.
It's like insulting actually,and I get it.
We can't bill for our services.
Usually the hospital takes aloss or whatever, but it just
it's a double-edged sword.
(25:48):
You have the job security.
You're not paid as well, youdon't have all these fun
benefits.
But when you're at a companythat's publicly traded and the
stock market crashes or yourstock goes from X to Y, there's
a really high risk that there'sgoing to be layoffs and we've
seen that.
(26:08):
Like you mentioned, the pastcouple of years has been really
rough, really rough for industrygenetic counselors.
I was the co-chair for the Laband Industry Special Interest
Group for NSGC and a big part ofwhat we talked about is we need
to be here as a group tosupport one another.
We need to start doing morenetworking, professional
(26:30):
development, thinking outside ofthe box, because when you get
laid off, you need to kind ofrecreate yourself a little bit
and think outside of the box ofopportunities, not just okay, I
have these skill sets, maybe youwant to do something else,
maybe there's a sales role, amarketing role, maybe you go
back to clinical practice.
You know we have to reallystart getting very fluid with
(26:53):
what we're doing and, just likeyou did in the beginning, you
thought about okay, I don't havea genetics background, but
these things apply to what I'mgoing to do.
We need to start thinking likethat more because, yeah, it's
been a really, really roughindustry right now and so it's a
challenge just to feelcomfortable in a role, being
(27:16):
like especially a new person ina role, thinking about okay, how
is the market, how are politicsgoing to influence my
livelihood.
So I think those are all biggerconcerns in the last couple of
years than we've experienced,you know, over my time at.
You know my company.
(27:36):
I've been there almost sevenyears now.
The past couple.
I mean we've been very lucky,we kind of run a tight ship, but
we've seen other othercompanies, unfortunately, you
know, make decisions that thenimpact a lot of their clinical
people, and so that's been,that's been, scary.
We have a lot of people thatend up going back to clinical
(27:57):
practice, not because they wantto, because they need to,
because they need a job, whichis never good.
You want people to be employedand be working within a role
because they want to, notbecause it's out of necessity.
Matt Burgess (28:11):
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(28:33):
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(28:53):
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This has been an interface withdata visualization tools such
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Trackgene has an experiencedteam who has been working in the
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Go to trackgenecom.
(29:15):
That's T-R-A-K-G-E-N-E dot com.
So you mentioned money.
So what I wanted to sort of askyou about was when you work
(29:35):
publicly, you know, as a geneticcounselor in a public hospital,
really like the.
The model that they use inaustralia is the.
Whether it's the stategovernment or the federal
government, they give, give likea bunch of money to the
hospital and then they have abudget that they you know they
(29:55):
need to use, and whether that'spaying salaries or paying for
the genetic tests and all ofthat.
But as a genetic counsellorworking publicly, you don't
really need to think aboutbudgets or money too much,
whereas when you work for aprivate company, and especially
one that's listed on the stockexchange, you know that is kind
(30:19):
of everywhere and it's reallyimportant.
Lauren Giannetti Sferrazz (30:23):
Sorry this is a long question.
No, no, it's go ahead.
Matt Burgess (30:26):
Yeah, trying to get that.
But what I wanted to talk toyou about is, like I know that
you're quite passionate aboutgender inclusive care and it
sort of just made me think whenyou're a privately listed
company, like a publicly listedcompany, it's really important
(30:48):
to have you know a lateral likethat is appropriate.
And you know you can't reallydo anything without compliance
checks and people checkingeverything me about gender
(31:18):
inclusive care and what you meanby that and how, as an MSL
manager at a big genetic testingcompany that has sort of become
part of your role.
Lauren Giannetti Sferrazza (31:23):
Yeah , it's been interesting and, as
you mentioned, you know beingpublicly treated.
There's a lot that goes intothat whenever you're trying to
make a stand about something.
So you have to think about whenI'm trying to make this topic
relevant.
Why is it relevant to me as aMSL, as a genetic counselor?
(31:45):
Well, it's because I believeeverybody should get good care.
They should have affirming care.
So when we say gender affirming, we want to make sure that,
whether somebody is trans,cisgendered, agendered, whether
they're bi, straight, gay,wherever they fall on the
spectrum, that we're providinggood care for everybody.
(32:09):
And what does that look like ata genetic testing company?
Well, we need to make sure thatthe way we deliver our services
, our results, are in a way thatis not going to invalidate
anybody's identity.
So an example of that would beon some reports.
Genetic testing reports, it'llsay what's the patient's sex or
(32:30):
what is their gender.
Reports, it'll say what's thepatient's sex or what is their
gender.
Anybody that's dug into genderinequalities or gender inclusive
care understands that sex andgender are completely different
terms.
I mean just and I you know again, it's not like I'm an expert, I
am no expert.
It's not like I did this I didwas my in college or I'm this
scholar.
It is because I just learned, Itook the time to research and
(32:55):
to learn, and so when you're ata company, a for profit company
you have to start thinking okay,this is important to me as a
clinician, is important to mypatients.
How does what I'm trying tochange because it's going to
take resources, which is dollarshow do I legitimize that to our
(33:16):
shareholders, to the board, toour business leaders?
How do I make a business caseas to why something that a lot
of people believe impacts asmall amount of patients
actually doesn't?
It's bigger than that.
It's.
How do I make this so that theyunderstand they being the
(33:36):
people that make these decisionson funding and where budgets go
?
Like you said, thinking of allthis stuff, how do I make it so
that they understand theimportance of why we're making
the argument we're making, howit aligns with the core values
of the company and how we can doit in a way that is efficient,
it's not going to cost a lot ofmoney and then being flexible,
(33:59):
because we have our pie in thesky, and then we also have to
say what is the bare minimum wehave to do and we need to get to
that bare minimum and worktowards the pie in the sky.
So, very sorry, very long windedanswer, but I think I got into
just this type of work andpassion because I had noticed
(34:23):
that a lot, of, a lot ofcollateral, a lot of things that
were patient facing were notinclusive.
I started to have conversationswith people in the genetic
counseling community about likehey, talk to me about this.
Like what are you doing and howare you in your clinic or in
your lab?
What are you doing to make thisbetter?
Because we know, in general,people that identify as LGBTQIA+
(34:51):
, especially trans people,there's such a high rate of
suicide and it's just notacceptable.
So we need to create a spacewhere people feel like they're
being validated, accepted and so, working at a company that
delivers so many results to somany patients, we have a unique
opportunity to really help ingeneral with that topic.
(35:15):
But also I see it as aneducational opportunity for our
customers.
You know there's there's a lotof people ordering genetic
testing that are not in the NewYork metro area, like me, that
get it, or in California and SanFrancisco, like we all get it
in the those areas.
But you know in the middle ofthe country or you know in the
South, maybe this isn't a topicthat they understand or want to
(35:38):
know or want to talk about andso kind of having this as part
of our process.
So an example is we have sex atbirth, no longer sex or gender,
you know.
That allows people to questionand say, well, why did they have
that sex at birth?
I wonder why, and hopefullypeople would start Googling or
educating themselves.
So I see it as an opportunityfor us to advocate, almost
(36:02):
silently in a way, to some ofour customers too that maybe
don't get it as much.
So there's a lot of layers atit as much.
So there's a lot of layers,especially when, when, when your
company acquires a non-invasiveprenatal test that is meant for
revealing gender only.
That is the only purpose ofthat test.
(36:23):
So that was that was tough tokind of navigate with gender
inclusive care.
You know, the the non-invasiveprenatal screening, testing,
whatever we're calling itnowadays, can be super
invalidating for people ingeneral, and testing is not
going away.
But how do we package it or howdo we message it or how do we
(36:44):
educate about it in a way thatis not going to be harmful to
other people is not going to beharmful to other people.
Matt Burgess (36:54):
That's been a lot.
You're definitely right, it islayered and I guess, having this
sort of conversation in ourcurrent, you know, period in the
world, you know, I think thatthere are some people that maybe
are quite radical or you knowtheir, yeah, their values or
(37:15):
their points of view are quiteextreme.
And then, you know, over thelast couple of years we have
sort of you know, this idea ofwokeism and you know what is
woke and you know it really hassort of come into common
parlance and it kind of makes methink, you know, there has to
be like a happy medium, like Idon't think we need to, I don't
(37:42):
know, like maybe I kind of thinksometimes I'm a bit too
conservative, but I think thatit is possible to kind of change
and to do better without beingconsidered or seen as woke or,
you know, just doing it toplease, you know, a certain
(38:03):
segment in the community or yeah, absolutely, it's super layered
.
Lauren Giannetti Sferrazza (38:09):
And and the other challenge is, you
know I am very involved in thistopic through lab and industry,
sig, through my work at mycompany, through a lot of
different avenues.
If you don't work in industryand you don't kind of see what
goes on behind the scenes, itseems very easy Like, just
(38:32):
change your paperwork, justchange this, just do that.
It's a lot more complicatedthan that, unfortunately, and,
like you said, that extremismactually doesn't help my cause
at all.
I have people that have beenreally not nice, not to me.
I mean, everybody's been reallygreat, because I just, I'm like
sure, give me your opinions.
(38:52):
Like it's not, it's fine, I'malways open to the conversation.
But you know, we've had meetingswith some of our leadership and
some people in the communityand in the genetic counseling
community and that level ofextremism, you know, really to
one way it's it doesn't workwell.
Again, we have to think abouthow is this going to look for
(39:16):
our shareholders, for our boardmembers?
Like there are people on theboard that I don't know what
their belief system is or whatthey agree or disagree with, and
so, especially when you're acompany, if you're making a
statement, the whole company andthe board has to be behind that
statement, so that becomeschallenging.
That's been a big challenge forme where my personal you know
(39:40):
I'm a little more liberal thanwhat you know I'm allowed to do
or to change within theconstruct of my company.
What's nice, though, is myhusband is in human resources at
a different, at apharmaceutical company, and he
reminds me he's like you know,you want things to move really
quickly.
You know that does not happen,and you all have made so many
(40:02):
big changes in such a shortamount of time.
Like you should be reallypleased, and they're continuing
to entertain these changes andmake them better.
But but we do have to have ahappy medium, because if we go
too extreme, we lose some of ourcustomers, we lose our
shareholders.
So I think that the businessaspect becomes crucial in
(40:25):
understanding, when you'readvocating for a change, making
sure that you're not going toocrazy, too off the board with it
, because it's just notrealistic, unfortunately.
Matt Burgess (40:38):
Well, thank you Lauren's husband.
That sounds like a beautiful,positive reframe.
Lauren Giannetti Sferrazza (40:43):
It was a very good reframe.
I you know I looked at him forall of that.
Matt Burgess (40:47):
Yeah, I know, sort of clinically myself over the
last couple of years workingwith mainly couples having NIPT,
like I kind of, you know, likethis, like if we take a step
back, you know, this whole testwas created to analyze the
(41:12):
baby's chromosomes and really itwas to look for the main
chromosome problem, which istrisomy 21 of you know, down
syndrome.
However, in creating this test,we're able to look at the sex
chromosomes and the sexchromosomes gives us our
biological sex most of the time.
And in practice I have sort ofmade a conscious point of
(41:38):
talking about sex, like when I'mshowing, you know, as a good
genetic counsellor, I've got mycarrier tight and I sit there
and explain the chromosomes andit goes from one down to 22.
And then the last pair are oursex chromosomes.
And I say you know, this testhas a look at the sex
chromosomes.
It tells us the sex and then Isay you know how would you like
(42:02):
to get your results and wouldyou like to know the sex of the
baby and whether people say yesor no?
And you know it's all excitingto think about that.
But then the next thing thatthey say is we're doing a gender
(42:24):
reveal party or like the wholereason that we're doing this is
to find out the gender, and Imean I don't correct people, but
it is.
It's like, I think, most of thetime at work, when I hear the
word gender and that's from mycolleagues and my patients what
they really are saying or whatthey're talking about is sex.
Yes, and I think your husband'sright like to change, you know,
(42:49):
without being too extreme, butto slowly change that idea or to
explain that there is adifference between sex and
gender, and it just takes timeand it's complicated it does,
and it's layered and yeah, allof those things.
Lauren Giannetti Sferrazza (43:05):
And I feel like gender reveals were
not like a big thing, maybe likewhen NIPT first came out, like
I remember sequenom was likereally big, they were like the
first, or they had maternity 21.
It was just for trisomy 21 downsyndrome.
That was like 10, 11, 12 yearsago and it's evolved since then
(43:26):
obviously, but I guess in thepast probably I don't know six,
maybe five years, the genderreveals have gotten more, like
people always wanted oh, what'sthe baby sex?
I want to know.
But then it it wasn't like theywere doing that testing just
for that purpose.
So it's been interesting aspatients become a little more
(43:46):
savvy with their own healthcare,their motivations for doing
certain tests change over thecourse of time.
So I think that's been reallyinteresting, along with,
obviously, like the 23andMe thatstuff, like people are very
motivated to do certain testsand the reasoning a lot of times
is very different than us inclinical practice why we would
(44:09):
want them to get the testing.
Matt Burgess (44:10):
Yeah, I think it's fascinating because, like, like
, yeah, I was thinking of this,the other day I saw a couple and
their whole and you know, thisis not, um, a judgment call and
it is what a lot of couples aredoing but they really came in
and their whole, like their solepurpose was to find out the sex
(44:33):
of the baby for a gender revealparty and, yeah, they hadn't
done a lot of, um, you know,medical stuff before and I kind
of had to.
I said, you know, like, and Ithink that it's lovely that as
genetic counsellors, you know, Iin in my with this particular
(44:56):
couple, I had time to sit downand really chat to them and you
know, it was their appointmentand I was able to sort of have a
really good conversation andfacilitate things.
Was what you want or whatyou're asking is completely fine
(45:16):
and I'm happy to facilitatethat.
But it's within a medicalconsult.
Like, this is actually amedical appointment and we're
doing a medical test and thereis the chance that a medical
problem can come up and, youknow, I think maybe let's just
(45:36):
like address it or talk about ita little bit, like, you know,
chances are that it won't, butyou know, this is more than just
like a fun, I don't know.
It's just hard because it'slike you know, having a baby is
such an exciting time forcouples, especially if they're
(45:56):
struggled with fertility, and Idon't want to sort of poo them
or be like the negative Nelly inthe consult.
Lauren Giannetti Sferrazza (46:06):
No, no, no, no, you're not.
That's our job.
That is our job is to bepatient advocates, right?
You're not going to tell them,no, you can't do this.
For that reason, you're goingto say this is great that you're
doing this and also, what'sgreat about this test is it can
give you really importantinformation about the health of
your future child.
So I had that conversation somany times when I was doing
(46:30):
preconception counseling with myfertility patients, where we
had a lot of patients cominginto the clinic.
They wanted sex selection.
That was the reason why theywere coming in doing IVF and
doing PGTA, because they wanteda boy or they wanted a girl or
whatever.
And to me I was like, oh my God, this is horrific.
(46:50):
But you know, whatever, nojudgment.
But I, you know, we, we talkabout listen, you're going
through all of this, you'regoing through IVF, you're going
to do the PGTA, but you don'twant to do carrier screening,
let's.
Let's do a sanity check herefor a hot minute, okay, and just
keep you know, keeping it real,like saying, like I get it,
like this is what you want, butlet's also make sure that your
(47:13):
baby is going to be healthy,right, that's really important
too, and we can get all thatinformation in a quick way in a
way that's really non-invasive,like might as well, like it's
great to know you're having aboy or a girl and you want to
have a party, but you also wantto have a healthy boy or a
healthy girl, and so I thinkthere's a way, especially the
(47:34):
way that we're trained with allthe psychosocial stuff, that we
can sprinkle it in without itcoming off as being like
condescending or you knowwhatever.
But I I appreciate the generalcounselor role in that, because
I don't know how how muchdoctors or other people that are
ordering are having that realconversation.
(47:54):
They're probably like, oh yeah,and it'll tell you about other
problems, blah, blah, blah, andthen that's it and they draw the
blood.
You know, my own experiencewith my OB was very again, I'm a
genetic counselor.
He knows I'm a geneticcounselor, but I'm like I wonder
what the conversation lookslike for somebody just a regular
patient, not a me.
So it's interesting forsomebody just a regular patient,
not a me, so it's interesting.
So I think it's important.
(48:16):
That's our job is to say, hey,great, I am so happy to advocate
for you.
Let's just make sure you reallyunderstand everything that
comes with this package that youwant.
Or I had a lot of patients thatwould say I really don't want
carrier screening, I'm not doingthis, blah blah blah.
And I would say listen, I'm notgoing to force you to do
(48:37):
anything, but let's make sureit's an informed, no right, like
why not?
So I I think that that youcan't go wrong and it's great
that they're coming to you andhaving the conversation because,
god forbid, you know you'rehaving a, a gender reveal, and
you find out kleinfelter.
It's like how does you know?
They give the result to theballoon person.
The balloon person's like whatthe hell?
(48:58):
What color balloons do I put inthis thing?
So it's just, you know sexchromosomes.
Matt Burgess (49:04):
What?
Lauren Giannetti Sferrazza (49:04):
do I do with that I've never seen
this one before.
So I just think there's somecomplexities that, um, you know,
maybe maybe the labs could alsodo a better job of kind of
advertising that a little bit intheir patient collateral, their
patient pieces, to say, hey,this is great, it gives you this
information, but it also givesyou medical grade information
(49:26):
about your baby and things thatcould be happening.
So, yeah, I think it's wellwithin our realm and it's
important for us to keep it realwith our patients and say, okay
, great, yes, but also yeah,good point.
I agree.
Matt Burgess (49:43):
Yeah, now, when we think of Lauren the genetic
counselor, we know or a lot ofpeople know that you have a lot
of experience in hereditarycancer, and one of the things I
also wanted to talk to you aboutwas point of care testing.
Oh yeah, yeah, let's talk aboutthat.
(50:04):
How do you see things changingand evolving in this sort of
area of clinical genetics?
Lauren Giannetti Sferrazza (50:13):
Oh, I love this topic.
I'm such a nerd.
It just has been amazing to seethis idea evolve over the past
couple of years.
I mean, I'm really excited thatthe NCCN, the National
Comprehensive Cancer Network Ithink I said that right
guidelines.
Those are the guidelines thatwe in the US use the most to
guide care and who should havegenetic testing in the cancer
(50:36):
space.
You know that has opened up alot for patients with cancer
because of different treatmentsand we know that like, let's say
, the most recent update wasanybody diagnosed with colon
cancer they could get genetictesting.
Same thing with endometrialcancer.
We used to have these kind ofarbitrary age cutoffs and
(50:57):
because of research literaturewe've seen throughout the years,
we know that we're missing alot of patients with hereditary
cancer if we have these kind ofarbitrary younger quote, unquote
age cutoffs.
So it's phenomenal for patientsand families.
It becomes challenging forgenetic counselors when we have
a very limited pool and where Isee us going and I've already
(51:20):
seen this we had a greatsymposium on this at the CGA
conference about how do we, asgenetic counselors, support
point of care testing.
It's really hard to give upcontrol.
Support point of care testing.
It's really hard to give upcontrol.
You are really excited aboutdoing the informed consent,
about getting family histories,all that fun stuff that we
learned in grad school.
But I push back a lot and sayis that you practicing at the
(51:45):
top of your license?
No, I could have a studentdoing a pedigree.
I could have a med tech doing apedigree.
You know some of these things.
We can be more savvy andefficient.
With A lot of places like PennMedicine.
They have like a triage wherethey have patients watching a
(52:06):
certain video and then they canconsent or not, and then the
genetic counselor comes in atthe end, which I think is
absolutely super appropriate.
I would argue positive,negative VUS.
I'd love every patient to see agenetic counselor.
I know that that's notsustainable, but if we pull
(52:27):
ourselves off of the front endthe pretest counseling maybe
it's a little more sustainable.
But I just see that we're goingto have to go to this model.
We're going to have to supportour clinicians that are seeing
these patients, getting themcomfortable with doing some of
the pretest counseling,especially in the cancer space.
Unfortunately, a lot of thesepatients are very sick and we
(52:49):
need this information fortreatments for their family
members and getting it in atimely manner is huge because
these treatments are becomingearlier and earlier and earlier.
Like for ovarian cancer, weknow if somebody fails.
You know treatment.
You know their maintenancetherapy something like that
(53:09):
first-line maintenance could bea PARP inhibitor that's based on
their BRCA status Like that'sreally on their BRCA status.
That's really important to knowbecause we know these
treatments work really well.
So if we don't get thesepatients in for testing, we're
depriving them of answers theyreally need for important
treatments, and thinking aboutpatients that are sick, they
can't go to multipleappointments, or thinking of
(53:32):
disparities in care.
You have a patient that barelycan make it to their
appointments because they'reworking or whatnot, and then
you're asking them to do anotherappointment with somebody else.
So the long and the short of itis, I see, point of care
testing is going to have tohappen across the board in all
cancer types.
We as genetic counselors withinour institutions need to be
(53:53):
supportive and partners to theseclinicians, which I've already
seen happening and work reallyreally well.
We're really good at teachingright, like that's what our you
know when we went to grad schooland we learned our pre-test
conversation, that's like we gotit down pat.
We can teach anybody anything,and so I want us to start
(54:13):
thinking again out of the box.
We're not just educatingpatients, we are educating
providers who then see a crapton of patients.
And so by kind of that extenderthey're like genetic counseling
extenders they're going to bereally touching a lot of
patients that we wouldn't beable to see or they wouldn't
come to our appointment or theyno show.
(54:35):
So I think in general we justhave to get comfortable with the
, with letting go and saying Itrust the process, I trust this
doctor, we're going to have agood relationship.
If they have questions they cancall me um.
And making it so that it makessense for the patient makes
sense for the practice, um, seepoint-of-care testing models
(54:58):
already in pancreatic, in breast, in ovarian.
I haven't seen it yet inendometrial cancer, because
that's a newer indication.
We just had Penn Dana-Farber,penn Dana-Farber and Fox Chase
present on what they're doingwith their point of care testing
(55:19):
.
So this is definitely happening.
I think it becomes easier pointof care testing when you don't
have any genetic counselorsinvolved.
Anyway.
Now it's just getting thesedoctors to say, hey, this is in
your purview, now you got to doit.
You can't just refer out, referout, refer out because your
patients 30% of them are showingup for their appointments.
(55:41):
So it becomes interesting whenyou're at an institution, like
in a rural area or anon-academic institution, what
do you do there?
How do you empower theproviders to do point of care
testing?
That's where I think a lot ofthe industry MSLs come into play
to say, hey, I can support youif you have questions, if you
(56:04):
need help reviewing a result.
You're not sure what to do.
I can be your phone a friend sothat you feel comfortable doing
this, because referring outjust doesn't work.
There's like a six month waitlist at a lot of places.
So, yeah, I am really in favorof point of care testing.
I think that we just need toget comfortable with it.
(56:25):
But it's, it's.
We've been moving there.
We just now.
We need to move faster.
Matt Burgess (56:31):
In Australia we call it mainstreaming and we're
going mainstream sort of issuesat the moment.
And it's funny because itshouldn't really come as no
surprise that maybe as geneticcounselors we do feel this you
know uncomfortable feeling, aswe're talking about before, like
(56:51):
we want to sort of control theprocess or you know, and yes, we
used to be the gatekeepers ofgenetic testing and yeah, not
anymore.
And again, like one of the oneof the issues or one of the
things that has enabled this tohappen is, is money, like it's
(57:12):
just so much cheaper to orderthe genetic test now than what
it used to be.
Um, yeah, one thing that reallysort of surprised me as a
little aussie gc moving toamerica was when we, you know,
in families in australia, when apathogenic mutation is
(57:33):
identified and people are havingpredictive testing, the genetic
counselor does a lot to confirmthat mutation.
We try and get a positivecontrol from the lab oh yeah, oh
yeah you know we want a copy ofsomeone's positive results and
you know we'll contact thedifferent genetic services, but
(57:54):
because we have a population ofless than 30 million, it is
actually not that hard to do.
And then when I started workingfor a lab in America and
they're like, oh, we don't havetime for that, that costs too
much money.
No, we don't just check forthat mutation, we just do a full
panel, and it's like, oh, wow,medicine is evolving and it's
(58:17):
because it's so so much cheaperand quicker.
You know, yeah, just, insteadof spending those man hours like
trying to do that, it's justlike you know technology is the
answer.
Lauren Giannetti Sferrazz (58:29):
Let's just do it so do it the the
back in the day.
I would say when I was in gradschool we were taught to do that
method that that is being doneoutside the U?
S of.
Hey, do your due diligence,track down the positive, send it
to the same lab that thatpatient you know relative was
positive, blah, blah, blah.
In theory it sounds great.
A lot of people weren't beingtested back in the day because
(58:52):
the guidelines were so stringent.
So, yeah, I had time to do it.
Now, with these all-comerindications, nobody's got time
for that and also it just causesa delay in care.
You know, it's almost like youhave a captive audience.
When you have your patient infront of you, you're like, all
right, let's just get this going, let's get your blood and if
(59:17):
you have to wait like if theyhave to come back or they have
to get you more records thelikelihood of them doing the
test it just drops exponentially.
And then you're on the hook asa clinician.
You're like, oh crap, thisperson's really high risk.
And I got to follow up withthem every six months.
Hey, did you send your kit?
Are you going to do it up withthem every six months?
Hey, did you send your kid, areyou going to do it?
Forget it.
Forget it.
(59:42):
It just causes a nightmare.
And yeah, it's cheap enough.
Insurance will usually cover orthe labs will have some sort of
agreement with a veryreasonable out-of-pocket cost.
So it's not that we're doing itthe right way.
I mean, theoretically, what youare all doing is really the
best way to do it.
It just it's so time consumingand people don't follow up.
(01:00:04):
They're not as invested intheir their care.
I do find if they have cancerthey're more invested versus if
they don't have cancer.
They're like oh yeah, whatever,it's fine, depending on the
family, depending, you know.
If I was seeing somebody fromManhattan Upper East Side, yeah,
they would already bring theirstack of records to the
(01:00:24):
appointment and like have it allfigured out what lab they want
to go to?
Like it just depends on howmotivated the patient is too.
But I'd say more than enoughtimes I had patients that were
just like oh yeah, I'll thinkabout it or I'll get the record.
I still haven't been tested,probably 10 years later now.
Matt Burgess (01:00:40):
so it's, uh, definitely a different
philosophy well, I think thatmight be a good spot to to
finish up like, with that on ourmind, the phrase just do it.
Lauren Giannetti Sferrazza (01:00:54):
Just yeah, just do it.
Matt Burgess (01:00:57):
Well, thank you so much, Lauren.
I've really enjoyed catching upwith you and having this really
interesting conversation.
I wish you all the best, havinga baby tomorrow or in the next
couple of days.
Lauren Giannetti Sferrazza (01:01:08):
I would love that.
Thank you.
Matt Burgess (01:01:11):
And yeah, good luck for the future.
Lauren Giannetti Sferrazz (01:01:15):
Thank you.
Thanks so much for inviting meon.
This is Demystifying Genetics.
I am your host, matt, and I ama genetic counsellor in
Melbourne, australia.
I have a genetic counsellingand testing company called
Rosalind Genetics and I seepatients from across Australia.
I am passionate about clinicalgenetics.
In this podcast, my guest isLauren Giannetti-Safaza.
(00:23):
Lauren is a genetic counsellorin New Jersey and in this
episode we start by discussingworking in industry.
Enjoy, hello Lauren, andwelcome to Demystifying Genetics
.
Lauren Giannetti Sferraz (00:42):
Thanks so much for having me, matt.
How's it going?
Good, good, you know I amwaiting any day for my child to
pop out, so that's exciting.
So, yeah, I am on, I guess,maternity leave at the moment.
Matt Burgess (00:58):
Well done, congratulations.
It's funny because as a highschool student I thought, you
know, I kind of left everythingto the last minute and I thought
, as I matured and you know, Iworked my way through university
and different degrees that Iwouldn't keep leaving stuff to
the last minute.
(01:18):
But I feel, like me and you,like, your baby is literally due
today.
We kind of have left it to thelast minute, but I'm so glad to
have you thank you so just um,give me a little signal or let
me know, like if you know yourwaters break or we need to, like
, get you to the hospital thatwould be phenomenal.
Lauren Giannetti Sferrazza (01:39):
I'd be very happy if that happened.
I'll just I'll just stop youand say, hey, I got to go.
Matt Burgess (01:44):
Yeah, I mean, I would appreciate to finish the
podcast, but yeah.
Lauren Giannetti Sferrazza (01:49):
Just finish it in the car on the way
to the hospital.
It's fine, it's really fine.
Matt Burgess (01:53):
Oh look, I've got some really interesting things
to talk to you about today.
I mean, maybe just to startwith, I know that in the genetic
counseling field there are youknow, it's mostly women.
That that's not a big surprise,and one of the things that we
sort of discuss sometimes is umtransference and
(02:15):
counter-transference when uh,we're pregnant.
It has been pregnant and beinga genetic counselor umor sort of
been interesting or like raisedthose kind of issues that we
sort of knew.
But you're experiencing?
Lauren Giannetti Sferraz (02:34):
That's such a good question.
Yeah, you know I and, to becompletely transparent, I
actually did fertility treatment.
So I really, you know, was veryscience, but this pregnancy is
very science-based to begin with.
So I think it was interestingto be on the other side of the
desk.
That's kind of how I viewedmyself.
(02:55):
I used to work with thisfertility center.
I used to be the geneticcounselor there, so it was
interesting to be on the flipside and I kind of tried to just
let things happen and not betoo type A like I usually am,
like a lot of us are.
I did my carrier screening manymoons ago, so that was taken
(03:18):
care of and I tried to just letthe professionals do their thing
and I kind of took a step back.
I did have a really interestingkind of session this morning,
not with a genetic counselor butwith an ultrasound tech, where
I went in and she made a commentand I don't think she realized.
(03:40):
I heard her where she's like,oh, what's that?
And my ears pricked up, youknow as a patient and as a
genetic counselor, and I see hergoing over and over and I was
like, okay, she's looking at thebrain.
What is she looking at?
How is she measuring?
So it's there's always going tobe that bleeding into your
personal professional.
(04:00):
Another really interestingexample was I was doing a fetal
echo and the woman who was doingthe echo was a breast cancer
survivor and she started askingme what do I do for work?
And I'm like, oh man, you knowI try really hard not to.
I try hard not to, you know, bepreachy or oh hey, did you do?
(04:20):
But it just kind of naturallycame up and so we talked about
how she had her genetic testing.
But she only had, you know, theold school BRCA one and two.
I don't even know what if shehad full rearrangement testing.
And so, yeah, we had a little.
I tried to keep it short andsweet, but when you're going to
the doctor, that often I meanit's just going to happen that
(04:42):
these things come up.
Whether it's about your ownhealth or somebody that is
taking care of you, bringsomething up.
So definitely was interesting,definitely interesting.
Matt Burgess (04:53):
Oh, that's funny.
Like I don't actually identifyas a type A person.
I think I'm much more type B,but because a lot of people that
we have as clients have no ideawhat genetic counselling is or
they don't know what to expect,I really feel like a big part of
my job is like I've got you, Iknow what we're doing, I've got
(05:15):
the session planned in my mind,like you just have to trust the
process and I will guide you ina very patient-centered way.
But it must be interesting tosort of be on the other side and
go okay, well, you know what,like I'm just going to trust the
process.
I don't actually have to likelead this and you know whatever
(05:38):
needs to happen will happen.
So, yeah, well done.
Lauren Giannetti Sferrazza (05:43):
I tried.
I mean, you know, of course Ialways slipped in.
You know, when I was getting myfetal echo, they're like, oh
yeah, we do this.
And I was like I know why we dothis and I know what it says
and I can read them.
You know the echo.
They're like oh OK, come intothe counselor Like, oh OK, you
know they get really excited.
So I try, try not to pull outthat card very often, but I just
(06:03):
.
Usually it's when they'reasking me like you reported a
family history of so-and-so, andthey start going and I'm like,
hey, so I'm not trying to berude, but you really don't have
to waste your time going throughall of it Like I'm a genetic
counselor.
We got, oh okay, great, youknow.
Matt Burgess (06:18):
So I tried to as much as I could just let them do
their thing without getting toocrazy.
Yeah, so one thing that I'dreally like to talk to you about
today is working in industry.
You know, I guess when I wasliving in America and I worked
(06:39):
in industry, one of the thingsthat actually really helped me
was listening to you on yourpodcast, or a podcast that you
were involved with.
You know, when I was goingthrough Spotify looking at all
of the past episodes, you wereactually involved with quite a
few.
How did you find that process?
Lauren Giannetti Sferrazza (07:01):
Oh, yeah, I'm trying to think of the
because I do a lot of differentstuff.
Yeah, I'm trying to think of thebecause I do a lot of different
stuff.
I kind of throw myself into alot of things, but I know my
company for a long time had acouple of podcasts that we were
doing with our chief medicalofficer, tj Slavin, and so that
was really cool just to kind oftalk about different topics and
(07:21):
try to get a feel for, you know,what does somebody that doesn't
work in industry, what do theyneed to know about this topic,
or what's really important?
Or if you're seeing this typeof result, how do you then
translate it into clinicalpractice?
So that, I think, is reallyinteresting and it kind of leads
to this idea that working inindustry doesn't mean you have
(07:45):
one job and one job only.
It's really fluid and you canmake it what you want it to be.
So it's not just I work forthis company and this is my one
job.
You know you really kind of cancreate a lot of opportunities
for yourself.
So I really loved doingpodcasts and doing webinars and
hosting tumor boards, and so Ikind of threw myself at those
(08:07):
opportunities when theypresented.
Matt Burgess (08:11):
It's not something that we usually spend a lot of
time on as genetic counselingstudents.
You know, it's like we kind oflearn.
Lauren Giannetti Sferrazza (08:19):
Or at all.
Matt Burgess (08:21):
Yeah, and I remember when I was a student
some of my classmates had sortof genetic counseling kind of
semi-related or adjacent jobs,whereas I was a salesperson at a
(08:41):
large electronic store and Ireally felt like it was a
disadvantage, whereas inhindsight I think being a
salesperson actually gave meskills that I used as a genetic
counsellor Absolutely.
And you know like I reallyliked the CMO who you worked
with.
He was obviously very sort ofknowledgeable and charismatic,
(09:05):
but when I listened to you twotogether I thought it was really
cool how I thought you were theone that made it more relevant
or you would bring it back ontopic and it sort of reminded me
of like in clinic, when geneticcounselors and geneticists work
(09:26):
together.
Lauren Giannetti Sferrazza (09:27):
Yes.
Matt Burgess (09:27):
And like because, as a new genetic counsellor, I
remember thinking what do I haveto add to this?
You know they're the doctor,They've got a medical degree.
Like, what am I adding to theprocess?
And you know, listening to thepodcast with you and TJ, it was
like, ah, I know exactly whatthe genetic counselor is adding
and, like, you're making this amuch better conversation.
Lauren Giannetti Sferrazza (09:51):
Yes, well, thank you for that.
I appreciate that.
I loved working with TJ.
That was kind of our dynamic,no matter what we were doing
together.
You know, I think somebodythat's just so wildly what we
were doing together.
You know, I think somebodythat's just so wildly talented
and intelligent.
Sometimes they get lost intheir own thoughts and so it was
kind of my job to bring it allback and say, okay, yes, great,
(10:13):
excellent points.
How do we now apply it?
Like, what does this actuallymean, giving that practical
application of whatever we'retalking about?
So I think about that too.
A tumor board I mean we had somereally heavy hitter national
thought leaders on there and inmy head you start getting
imposter syndrome.
(10:33):
I'm like who the heck am I?
I mean, I'm just this geneticcounselor.
This person is on X amount ofclinical trials.
They're the head of this reallyimpressive academic institution
and running all of thesedifferent things.
But I think that, like you said, we have a really unique skill
set and we have different skillsthat are transferable from
(10:56):
other positions that we've heldor whatnot.
So I think that it's beenreally interesting just to see
where you put your passions, youlet your passions drive you and
then how you kind of figure itout within your role.
Matt Burgess (11:11):
And.
I guess, that passion that youhave in industry?
Was that something that youalways knew, that that was sort
of the area that you wanted toget into, or did it sort of
evolve after?
How did that kind of take place?
Lauren Giannetti Sferraz (11:28):
That's a really great question.
I started in clinical practice.
I love patient care.
That's why I became a geneticcounselor.
I love genetics.
I knew bench work was not mything.
I did evaporate my gelelectrophoresis so I just was
not good at the lab.
So I was like, okay, this isnot going to work for me, but I
(11:49):
love talking to people, I loveadvocating for patients.
So I did that for a while.
I did as I mentioned.
I worked with a fertility centerand I got very burnt out.
I was seeing nine 10 patients aday.
It was highly emotional.
I was on call all the timebecause these fertility patients
you know things can change witha snap of your fingers.
(12:11):
So they were wonderful, just alot for a brand new grad.
And so I did about four and ahalf years and had a lot of
friends that were working at thecompany I currently work at and
I had some hesitancy aboutgoing into industry.
For me it was like, well, am Inow just not doing what I set
(12:32):
out to do?
I want to be there for patients, I want to be a patient
advocate.
How do I do that?
Working in industry and bylistening to other people that
worked in industry.
I was really impressed by theamount of people they were able
to impact versus my directimpact was, however many
patients I was seeing and that'skind of it.
So it's very small versus anindustry.
(12:54):
You impact potentially millionsof patients, especially if
you're working in like payermarkets or you're helping to
change guidelines.
You know that kind of thing.
So I never saw myself inindustry.
There was an opportunity thatpresented itself.
I felt like it was a good fit.
I was ready to kind of removemyself from direct patient care
(13:16):
and I've never regretted thatdecision that I made.
And it's interesting because alot of students so we have a lot
of students that rotate throughI'm still involved in a lot of
different programs.
They from the get-go kind of say, hey, I think I want to
actually be in industry.
I don't know that.
I want to do direct patientcare and I'm looking at the date
now I graduated oh my gosh,like over 10 years ago.
(13:39):
It's just crazy to say that wasnot an option for us.
It was like you go into clinicand you do prenatal or peds.
There was maybe one or twocancer jobs at the time, but it
just it was not.
It was not positive.
If you went into industry youwere looked down on that.
(13:59):
Oh, you're not giving back toour community, to our patients,
and that's just so different now.
So I had, I think, kind of atraditional way of getting to
industry.
If you're somebody that's of mygeneration nowadays, I'd say,
like for the past I've seen achange, maybe four-ish years.
We've seen more students goingright into industry because they
(14:21):
have industry rotations.
So they know what it is, theyget it, they say this is it,
this is what I want to do, andwe're happy to hire new grads
too.
So that's kind of my story.
Matt Burgess (14:33):
You bring up a really interesting point.
Like it's something that Ithink about, especially, you
know, my involvement withteaching genetic counselling
students, and the option, or,yeah, the option of going
straight into industry.
Like I don't know if I'm just abit old-fashioned or a purist,
or but I kind of think, oh, like, my advice is, usually do your
(14:59):
time clinically, like, do yourtime, yes, like a public
hospital, like I think, if youlike, if you were kind of um
designing like the perfectcareer path, I think you know,
maybe two years in a largepublic hospital, get experience
in many different areas, andthen sort of go in and I don't
(15:20):
know, like I sort of questionmyself and I think you, you know
, is that the best way?
Like you know, and why are we?
Why do I think that?
And, you know, if you do gostraight into industry, is that
a disadvantage?
I don't know, it's stillsomething that I think about.
Lauren Giannetti Sferrazza (15:39):
I think about it the same way too
and I'm of the same kind ofmindset of.
You know, get your stripes, doyour time.
It sounds like a jail sentence.
Do your time, get your streetcred.
You know.
I think it helps, depending onyour role, because right
Industry doesn't mean you'rejust.
I'm an MSL manager, a medicalscience liaison manager.
(16:00):
My team supports people thatare ordering genetic testing.
So it does help to haveclinical experience with that
role and people will look to youmore if you've had clinical
experience.
But if you're in a role amarketing role or payer markets
role, or your direct patientsupport, you know, having
(16:21):
clinical experience may or maynot really be beneficial or they
don't really care.
It's hard because it is thatbias I think that you and I have
it A lot of people have of.
Like I probably would lookfavorably on somebody that has
that experience.
I mean, I just hired, I justhad added somebody to my team.
I'll probably be hiring againand again and again and I always
(16:44):
look for somebody with clinicalexperience because of the role
I'm trying to fill.
So I think it's.
It depends on, I guess, whatrole the person's trying to fill
.
But I do think that there'sthat mentality of a couple of
years under your belt.
Then come into industry so thatwhen you know different people
have questions, you could say,oh, this is what I used to do.
(17:05):
Or hey, I can feel your pain, Iget it.
I understand how challenginginsurance is.
Does that mean somebody withoutclinical experience would be
like a poor candidate?
No, there are really greatpeople that rotate through.
They do a great job.
So I'm trying to get over myown biases with that, especially
as a hiring manager, butdefinitely the role that that my
(17:29):
team has.
We look more for people thathave actually like five to eight
years of clinical experiencebecause we have a pretty highly
successful, highly educated,experienced team.
So you and I are on the samepage with that.
I'm trying to get over it.
Matt Burgess (17:44):
Well, I mean, it's good that you sort of are able
to reflect on it and think aboutwhether that's the best way
forward or not.
I guess one thing that makesAustralia and New Zealand sort
of different from America isit's much harder to become board
(18:05):
certified in Australia ifyou're not going through a
clinical pathway.
Yeah, yeah, like in America,you see the board exam and if
you pass you're board certified,whereas over here, yeah, it's
sort of like a portfolio and youneed to have cases and clinical
(18:26):
hours, and I think it's thesame in the UK.
Lauren Giannetti Sferrazza (18:29):
I had somebody that was moving to
the UK and I talked to her about, you know, are you still going
to maintain what you have donehere?
Because here's different If youmove back, it's a very
different credentialing systemand it's a lot.
I mean, I give everybodyoutside of the US a lot of
credit because it's a lot ofwork.
I mean, it's a lot of work tomaintain what, what you're doing
(18:55):
and get that certification.
Versus us it's like, oh, justpass an exam, get your CVU,
which is a big deal, I'm notdownplaying that, that was hard
too which is a big deal, I'm notdownplaying that.
That was hard too, but it'sdefinitely not as painful.
Matt Burgess (19:08):
I think, just kind of reflecting on what I've
heard about, you know, outsidethe US, and I think you know one
of the things that influencesthat, especially in the United
Kingdom and Australia, is thefact that we have national
healthcare systems.
So genetics and you know,clinical genetics is really
based in public health andpublic hospitals.
(19:32):
So, and that's not so much thecase, if at all, in the United
States and one of the thingswhat I'm sort of leading up to
is I wanted to talk about thatidea, or this concept that most
of us in the genetic counsellingindustry understand, of going
(19:53):
to the dark side.
You know, like working inindustry.
It's something you know as anexperienced genetic counsellor
who lived in America and thenworked in industry and then now
I'm back in Australia.
I feel like we look to ourfriends and colleagues in
(20:16):
America and what you guys havedone, you know we're sort of a
little bit behind, so we seewhat you have done.
You know we're sort of a littlebit behind, so we see what you
have done, and there are lots ofopportunities for genetic
counsellors in industry whereaslike, probably I would say like
95% of genetic counsellors inAustralia work in the public
health system, so there's not asmany opportunities.
(20:39):
But there really is thisfeeling that you're sort of
going to the dark side.
Let's talk about that.
What do you have to say aboutthat?
Is that something that you kindof feel or have experienced?
Lauren Giannetti Sferrazza (20:54):
I definitely experienced it Again.
Like I mentioned, I graduatedover 10 years ago.
Where industry jobs were, theywere there but they weren't as
favorable to take.
And when, um one of my friends,uh, actually went right into
(21:15):
industry from school, um one ofour teachers and assistant
program director at the timesaid oh wow, you're going to the
dark side.
And just to hear that fromsomebody that's mentored you,
you're like ooh, that's kind ofa running joke for anybody that
works in industry, because it'skind of like okay, that was the
(21:37):
sentiment many moons ago.
It has very much changed,especially with kind of the new
mentality.
I think students are way moreopen-minded nowadays, especially
with kind of the new mentality.
I think students are way moreopen-minded nowadays, especially
with getting clinical hourswith labs so that they see what
it is, you know.
I wonder if that mentality ofgoing to the dark side is, you
(22:00):
know we're working forfor-profit companies and we're
making better salaries.
It's hard because I never hadthat sentiment, so I don't know
where exactly it comes from.
But I think that people thatgraduated prior to me, like that
, have 20 or 30 years ofexperience in the field.
Maybe they still have kind ofthat kind of uninformed opinion.
(22:24):
I do feel like it isn't as muchhappening because we've seen so
many more people come fromclinic moving over to industry.
Even when I have conversationswith people in clinic, I tell
them hey, listen, you knowyou're burnt out like go to
industry, you still can impactpatients, you still can do what
(22:46):
you're doing but be moreefficient and you're not going
to want to cry every time youleave work because you have this
many charts to finish andyou're not getting the support
from the hospital system to hireanother person.
I mean, industry is not perfect.
It's a lot of dollars and centsso you have to be business
savvy and kind of get it.
(23:07):
But yeah, it's, theconversation has changed so much
.
But yeah, the people peopledefinitely questioned me when,
when my transition happened,especially with the company that
I work for, and people werelooked at me and they scratched
their head.
They said, okay, well, I feellike I trust you, so like, if
you're going to this company,you know maybe I need to think
(23:28):
again about industry and thiscompany and the credibility, and
so I think the more people thattransition into industry and
we've all made reputations,we're credible, we're.
We're all genetic counselors.
We all came from the same place.
You know that mentality startsto shift, but definitely an old
school mentality still happens.
Matt Burgess (23:50):
And I guess, like anything in life, there's
positives and negatives.
And especially working in publichealth.
You sort of once you're in it,you know there is job security
there, like it is, you know likeit's almost a job for life,
(24:12):
whereas, yeah, you know, one ofthe disadvantages of working in
industry is that, um, and youknow, something that we've seen
and I've sort of experiencedpersonally was um the layoffs
that can happen and, you know,restructuring of companies and
that.
But you know, you mentionedsort of reimbursement or you
(24:34):
know, like salaries and stuff,and sometimes, like I realized
that some of the MSLs or youknow people working in industry
were probably on double whatpeople in clinics were on, and
it's like oh.
I don't know whether this issustainable, but you know there
(24:55):
are huge benefits and it can bereally interesting in your
career progression to sort ofspice it up and change things.
Lauren Giannetti Sferrazza (25:06):
I agree, and I do think you make a
very good point, that some ofthese public health roles,
clinical roles.
Usually you don't see peoplegetting furloughed or laid off
from clinical jobs.
I mean because they're so slimto begin with.
Unfortunately they're not wellpaid.
We all know that.
I mean you look at theprofessional status survey.
(25:27):
It's gotten better, but it ispathetic.
The amount of money thatgenetic counselors are making in
clinical practice.
It's like insulting actually,and I get it.
We can't bill for our services.
Usually the hospital takes aloss or whatever, but it just
it's a double-edged sword.
(25:48):
You have the job security.
You're not paid as well, youdon't have all these fun
benefits.
But when you're at a companythat's publicly traded and the
stock market crashes or yourstock goes from X to Y, there's
a really high risk that there'sgoing to be layoffs and we've
seen that.
(26:08):
Like you mentioned, the pastcouple of years has been really
rough, really rough for industrygenetic counselors.
I was the co-chair for the Laband Industry Special Interest
Group for NSGC and a big part ofwhat we talked about is we need
to be here as a group tosupport one another.
We need to start doing morenetworking, professional
(26:30):
development, thinking outside ofthe box, because when you get
laid off, you need to kind ofrecreate yourself a little bit
and think outside of the box ofopportunities, not just okay, I
have these skill sets, maybe youwant to do something else,
maybe there's a sales role, amarketing role, maybe you go
back to clinical practice.
You know we have to reallystart getting very fluid with
(26:53):
what we're doing and, just likeyou did in the beginning, you
thought about okay, I don't havea genetics background, but
these things apply to what I'mgoing to do.
We need to start thinking likethat more because, yeah, it's
been a really, really roughindustry right now and so it's a
challenge just to feelcomfortable in a role, being
(27:16):
like especially a new person ina role, thinking about okay, how
is the market, how are politicsgoing to influence my
livelihood.
So I think those are all biggerconcerns in the last couple of
years than we've experienced,you know, over my time at.
You know my company.
(27:36):
I've been there almost sevenyears now.
The past couple.
I mean we've been very lucky,we kind of run a tight ship, but
we've seen other othercompanies, unfortunately, you
know, make decisions that thenimpact a lot of their clinical
people, and so that's been,that's been, scary.
We have a lot of people thatend up going back to clinical
(27:57):
practice, not because they wantto, because they need to,
because they need a job, whichis never good.
You want people to be employedand be working within a role
because they want to, notbecause it's out of necessity.
Matt Burgess (28:11):
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You can request a demo for free.
Go to trackgenecom.
(29:15):
That's T-R-A-K-G-E-N-E dot com.
So you mentioned money.
So what I wanted to sort of askyou about was when you work
(29:35):
publicly, you know, as a geneticcounselor in a public hospital,
really like the.
The model that they use inaustralia is the.
Whether it's the stategovernment or the federal
government, they give, give likea bunch of money to the
hospital and then they have abudget that they you know they
(29:55):
need to use, and whether that'spaying salaries or paying for
the genetic tests and all ofthat.
But as a genetic counsellorworking publicly, you don't
really need to think aboutbudgets or money too much,
whereas when you work for aprivate company, and especially
one that's listed on the stockexchange, you know that is kind
(30:19):
of everywhere and it's reallyimportant.
Lauren Giannetti Sferrazz (30:23):
Sorry this is a long question.
No, no, it's go ahead.
Matt Burgess (30:26):
Yeah, trying to get that.
But what I wanted to talk toyou about is, like I know that
you're quite passionate aboutgender inclusive care and it
sort of just made me think whenyou're a privately listed
company, like a publicly listedcompany, it's really important
(30:48):
to have you know a lateral likethat is appropriate.
And you know you can't reallydo anything without compliance
checks and people checkingeverything me about gender
(31:18):
inclusive care and what you meanby that and how, as an MSL
manager at a big genetic testingcompany that has sort of become
part of your role.
Lauren Giannetti Sferrazza (31:23):
Yeah , it's been interesting and, as
you mentioned, you know beingpublicly treated.
There's a lot that goes intothat whenever you're trying to
make a stand about something.
So you have to think about whenI'm trying to make this topic
relevant.
Why is it relevant to me as aMSL, as a genetic counselor?
(31:45):
Well, it's because I believeeverybody should get good care.
They should have affirming care.
So when we say gender affirming, we want to make sure that,
whether somebody is trans,cisgendered, agendered, whether
they're bi, straight, gay,wherever they fall on the
spectrum, that we're providinggood care for everybody.
(32:09):
And what does that look like ata genetic testing company?
Well, we need to make sure thatthe way we deliver our services
, our results, are in a way thatis not going to invalidate
anybody's identity.
So an example of that would beon some reports.
Genetic testing reports, it'llsay what's the patient's sex or
(32:30):
what is their gender.
Reports, it'll say what's thepatient's sex or what is their
gender.
Anybody that's dug into genderinequalities or gender inclusive
care understands that sex andgender are completely different
terms.
I mean just and I you know again, it's not like I'm an expert, I
am no expert.
It's not like I did this I didwas my in college or I'm this
scholar.
It is because I just learned, Itook the time to research and
(32:55):
to learn, and so when you're ata company, a for profit company
you have to start thinking okay,this is important to me as a
clinician, is important to mypatients.
How does what I'm trying tochange because it's going to
take resources, which is dollarshow do I legitimize that to our
(33:16):
shareholders, to the board, toour business leaders?
How do I make a business caseas to why something that a lot
of people believe impacts asmall amount of patients
actually doesn't?
It's bigger than that.
It's.
How do I make this so that theyunderstand they being the
(33:36):
people that make these decisionson funding and where budgets go
?
Like you said, thinking of allthis stuff, how do I make it so
that they understand theimportance of why we're making
the argument we're making, howit aligns with the core values
of the company and how we can doit in a way that is efficient,
it's not going to cost a lot ofmoney and then being flexible,
(33:59):
because we have our pie in thesky, and then we also have to
say what is the bare minimum wehave to do and we need to get to
that bare minimum and worktowards the pie in the sky.
So, very sorry, very long windedanswer, but I think I got into
just this type of work andpassion because I had noticed
(34:23):
that a lot, of, a lot ofcollateral, a lot of things that
were patient facing were notinclusive.
I started to have conversationswith people in the genetic
counseling community about likehey, talk to me about this.
Like what are you doing and howare you in your clinic or in
your lab?
What are you doing to make thisbetter?
Because we know, in general,people that identify as LGBTQIA+
(34:51):
, especially trans people,there's such a high rate of
suicide and it's just notacceptable.
So we need to create a spacewhere people feel like they're
being validated, accepted and so, working at a company that
delivers so many results to somany patients, we have a unique
opportunity to really help ingeneral with that topic.
(35:15):
But also I see it as aneducational opportunity for our
customers.
You know there's there's a lotof people ordering genetic
testing that are not in the NewYork metro area, like me, that
get it, or in California and SanFrancisco, like we all get it
in the those areas.
But you know in the middle ofthe country or you know in the
South, maybe this isn't a topicthat they understand or want to
(35:38):
know or want to talk about andso kind of having this as part
of our process.
So an example is we have sex atbirth, no longer sex or gender,
you know.
That allows people to questionand say, well, why did they have
that sex at birth?
I wonder why, and hopefullypeople would start Googling or
educating themselves.
So I see it as an opportunityfor us to advocate, almost
(36:02):
silently in a way, to some ofour customers too that maybe
don't get it as much.
So there's a lot of layers atit as much.
So there's a lot of layers,especially when, when, when your
company acquires a non-invasiveprenatal test that is meant for
revealing gender only.
That is the only purpose ofthat test.
(36:23):
So that was that was tough tokind of navigate with gender
inclusive care.
You know, the the non-invasiveprenatal screening, testing,
whatever we're calling itnowadays, can be super
invalidating for people ingeneral, and testing is not
going away.
But how do we package it or howdo we message it or how do we
(36:44):
educate about it in a way thatis not going to be harmful to
other people is not going to beharmful to other people.
Matt Burgess (36:54):
That's been a lot.
You're definitely right, it islayered and I guess, having this
sort of conversation in ourcurrent, you know, period in the
world, you know, I think thatthere are some people that maybe
are quite radical or you knowtheir, yeah, their values or
(37:15):
their points of view are quiteextreme.
And then, you know, over thelast couple of years we have
sort of you know, this idea ofwokeism and you know what is
woke and you know it really hassort of come into common
parlance and it kind of makes methink, you know, there has to
be like a happy medium, like Idon't think we need to, I don't
(37:42):
know, like maybe I kind of thinksometimes I'm a bit too
conservative, but I think thatit is possible to kind of change
and to do better without beingconsidered or seen as woke or,
you know, just doing it toplease, you know, a certain
(38:03):
segment in the community or yeah, absolutely, it's super layered
.
Lauren Giannetti Sferrazza (38:09):
And and the other challenge is, you
know I am very involved in thistopic through lab and industry,
sig, through my work at mycompany, through a lot of
different avenues.
If you don't work in industryand you don't kind of see what
goes on behind the scenes, itseems very easy Like, just
(38:32):
change your paperwork, justchange this, just do that.
It's a lot more complicatedthan that, unfortunately, and,
like you said, that extremismactually doesn't help my cause
at all.
I have people that have beenreally not nice, not to me.
I mean, everybody's been reallygreat, because I just, I'm like
sure, give me your opinions.
(38:52):
Like it's not, it's fine, I'malways open to the conversation.
But you know, we've had meetingswith some of our leadership and
some people in the communityand in the genetic counseling
community and that level ofextremism, you know, really to
one way it's it doesn't workwell.
Again, we have to think abouthow is this going to look for
(39:16):
our shareholders, for our boardmembers?
Like there are people on theboard that I don't know what
their belief system is or whatthey agree or disagree with, and
so, especially when you're acompany, if you're making a
statement, the whole company andthe board has to be behind that
statement, so that becomeschallenging.
That's been a big challenge forme where my personal you know
(39:40):
I'm a little more liberal thanwhat you know I'm allowed to do
or to change within theconstruct of my company.
What's nice, though, is myhusband is in human resources at
a different, at apharmaceutical company, and he
reminds me he's like you know,you want things to move really
quickly.
You know that does not happen,and you all have made so many
(40:02):
big changes in such a shortamount of time.
Like you should be reallypleased, and they're continuing
to entertain these changes andmake them better.
But but we do have to have ahappy medium, because if we go
too extreme, we lose some of ourcustomers, we lose our
shareholders.
So I think that the businessaspect becomes crucial in
(40:25):
understanding, when you'readvocating for a change, making
sure that you're not going toocrazy, too off the board with it
, because it's just notrealistic, unfortunately.
Matt Burgess (40:38):
Well, thank you Lauren's husband.
That sounds like a beautiful,positive reframe.
Lauren Giannetti Sferrazza (40:43):
It was a very good reframe.
I you know I looked at him forall of that.
Matt Burgess (40:47):
Yeah, I know, sort of clinically myself over the
last couple of years workingwith mainly couples having NIPT,
like I kind of, you know, likethis, like if we take a step
back, you know, this whole testwas created to analyze the
(41:12):
baby's chromosomes and really itwas to look for the main
chromosome problem, which istrisomy 21 of you know, down
syndrome.
However, in creating this test,we're able to look at the sex
chromosomes and the sexchromosomes gives us our
biological sex most of the time.
And in practice I have sort ofmade a conscious point of
(41:38):
talking about sex, like when I'mshowing, you know, as a good
genetic counsellor, I've got mycarrier tight and I sit there
and explain the chromosomes andit goes from one down to 22.
And then the last pair are oursex chromosomes.
And I say you know, this testhas a look at the sex
chromosomes.
It tells us the sex and then Isay you know how would you like
(42:02):
to get your results and wouldyou like to know the sex of the
baby and whether people say yesor no?
And you know it's all excitingto think about that.
But then the next thing thatthey say is we're doing a gender
(42:24):
reveal party or like the wholereason that we're doing this is
to find out the gender, and Imean I don't correct people, but
it is.
It's like, I think, most of thetime at work, when I hear the
word gender and that's from mycolleagues and my patients what
they really are saying or whatthey're talking about is sex.
Yes, and I think your husband'sright like to change, you know,
(42:49):
without being too extreme, butto slowly change that idea or to
explain that there is adifference between sex and
gender, and it just takes timeand it's complicated it does,
and it's layered and yeah, allof those things.
Lauren Giannetti Sferrazza (43:05):
And I feel like gender reveals were
not like a big thing, maybe likewhen NIPT first came out, like
I remember sequenom was likereally big, they were like the
first, or they had maternity 21.
It was just for trisomy 21 downsyndrome.
That was like 10, 11, 12 yearsago and it's evolved since then
(43:26):
obviously, but I guess in thepast probably I don't know six,
maybe five years, the genderreveals have gotten more, like
people always wanted oh, what'sthe baby sex?
I want to know.
But then it it wasn't like theywere doing that testing just
for that purpose.
So it's been interesting aspatients become a little more
(43:46):
savvy with their own healthcare,their motivations for doing
certain tests change over thecourse of time.
So I think that's been reallyinteresting, along with,
obviously, like the 23andMe thatstuff, like people are very
motivated to do certain testsand the reasoning a lot of times
is very different than us inclinical practice why we would
(44:09):
want them to get the testing.
Matt Burgess (44:10):
Yeah, I think it's fascinating because, like, like
, yeah, I was thinking of this,the other day I saw a couple and
their whole and you know, thisis not, um, a judgment call and
it is what a lot of couples aredoing but they really came in
and their whole, like their solepurpose was to find out the sex
(44:33):
of the baby for a gender revealparty and, yeah, they hadn't
done a lot of, um, you know,medical stuff before and I kind
of had to.
I said, you know, like, and Ithink that it's lovely that as
genetic counsellors, you know, Iin in my with this particular
(44:56):
couple, I had time to sit downand really chat to them and you
know, it was their appointmentand I was able to sort of have a
really good conversation andfacilitate things.
Was what you want or whatyou're asking is completely fine
(45:16):
and I'm happy to facilitatethat.
But it's within a medicalconsult.
Like, this is actually amedical appointment and we're
doing a medical test and thereis the chance that a medical
problem can come up and, youknow, I think maybe let's just
(45:36):
like address it or talk about ita little bit, like, you know,
chances are that it won't, butyou know, this is more than just
like a fun, I don't know.
It's just hard because it'slike you know, having a baby is
such an exciting time forcouples, especially if they're
(45:56):
struggled with fertility, and Idon't want to sort of poo them
or be like the negative Nelly inthe consult.
Lauren Giannetti Sferrazza (46:06):
No, no, no, no, you're not.
That's our job.
That is our job is to bepatient advocates, right?
You're not going to tell them,no, you can't do this.
For that reason, you're goingto say this is great that you're
doing this and also, what'sgreat about this test is it can
give you really importantinformation about the health of
your future child.
So I had that conversation somany times when I was doing
(46:30):
preconception counseling with myfertility patients, where we
had a lot of patients cominginto the clinic.
They wanted sex selection.
That was the reason why theywere coming in doing IVF and
doing PGTA, because they wanteda boy or they wanted a girl or
whatever.
And to me I was like, oh my God, this is horrific.
(46:50):
But you know, whatever, nojudgment.
But I, you know, we, we talkabout listen, you're going
through all of this, you'regoing through IVF, you're going
to do the PGTA, but you don'twant to do carrier screening,
let's.
Let's do a sanity check herefor a hot minute, okay, and just
keep you know, keeping it real,like saying, like I get it,
like this is what you want, butlet's also make sure that your
(47:13):
baby is going to be healthy,right, that's really important
too, and we can get all thatinformation in a quick way in a
way that's really non-invasive,like might as well, like it's
great to know you're having aboy or a girl and you want to
have a party, but you also wantto have a healthy boy or a
healthy girl, and so I thinkthere's a way, especially the
(47:34):
way that we're trained with allthe psychosocial stuff, that we
can sprinkle it in without itcoming off as being like
condescending or you knowwhatever.
But I I appreciate the generalcounselor role in that, because
I don't know how how muchdoctors or other people that are
ordering are having that realconversation.
(47:54):
They're probably like, oh yeah,and it'll tell you about other
problems, blah, blah, blah, andthen that's it and they draw the
blood.
You know, my own experiencewith my OB was very again, I'm a
genetic counselor.
He knows I'm a geneticcounselor, but I'm like I wonder
what the conversation lookslike for somebody just a regular
patient, not a me.
So it's interesting forsomebody just a regular patient,
not a me, so it's interesting.
So I think it's important.
(48:16):
That's our job is to say, hey,great, I am so happy to advocate
for you.
Let's just make sure you reallyunderstand everything that
comes with this package that youwant.
Or I had a lot of patients thatwould say I really don't want
carrier screening, I'm not doingthis, blah blah blah.
And I would say listen, I'm notgoing to force you to do
(48:37):
anything, but let's make sureit's an informed, no right, like
why not?
So I I think that that youcan't go wrong and it's great
that they're coming to you andhaving the conversation because,
god forbid, you know you'rehaving a, a gender reveal, and
you find out kleinfelter.
It's like how does you know?
They give the result to theballoon person.
The balloon person's like whatthe hell?
(48:58):
What color balloons do I put inthis thing?
So it's just, you know sexchromosomes.
Matt Burgess (49:04):
What?
Lauren Giannetti Sferrazza (49:04):
do I do with that I've never seen
this one before.
So I just think there's somecomplexities that, um, you know,
maybe maybe the labs could alsodo a better job of kind of
advertising that a little bit intheir patient collateral, their
patient pieces, to say, hey,this is great, it gives you this
information, but it also givesyou medical grade information
(49:26):
about your baby and things thatcould be happening.
So, yeah, I think it's wellwithin our realm and it's
important for us to keep it realwith our patients and say, okay
, great, yes, but also yeah,good point.
I agree.
Matt Burgess (49:43):
Yeah, now, when we think of Lauren the genetic
counselor, we know or a lot ofpeople know that you have a lot
of experience in hereditarycancer, and one of the things I
also wanted to talk to you aboutwas point of care testing.
Oh yeah, yeah, let's talk aboutthat.
(50:04):
How do you see things changingand evolving in this sort of
area of clinical genetics?
Lauren Giannetti Sferrazza (50:13):
Oh, I love this topic.
I'm such a nerd.
It just has been amazing to seethis idea evolve over the past
couple of years.
I mean, I'm really excited thatthe NCCN, the National
Comprehensive Cancer Network Ithink I said that right
guidelines.
Those are the guidelines thatwe in the US use the most to
guide care and who should havegenetic testing in the cancer
(50:36):
space.
You know that has opened up alot for patients with cancer
because of different treatmentsand we know that like, let's say
, the most recent update wasanybody diagnosed with colon
cancer they could get genetictesting.
Same thing with endometrialcancer.
We used to have these kind ofarbitrary age cutoffs and
(50:57):
because of research literaturewe've seen throughout the years,
we know that we're missing alot of patients with hereditary
cancer if we have these kind ofarbitrary younger quote, unquote
age cutoffs.
So it's phenomenal for patientsand families.
It becomes challenging forgenetic counselors when we have
a very limited pool and where Isee us going and I've already
(51:20):
seen this we had a greatsymposium on this at the CGA
conference about how do we, asgenetic counselors, support
point of care testing.
It's really hard to give upcontrol.
Support point of care testing.
It's really hard to give upcontrol.
You are really excited aboutdoing the informed consent,
about getting family histories,all that fun stuff that we
learned in grad school.
But I push back a lot and sayis that you practicing at the
(51:45):
top of your license?
No, I could have a studentdoing a pedigree.
I could have a med tech doing apedigree.
You know some of these things.
We can be more savvy andefficient.
With A lot of places like PennMedicine.
They have like a triage wherethey have patients watching a
(52:06):
certain video and then they canconsent or not, and then the
genetic counselor comes in atthe end, which I think is
absolutely super appropriate.
I would argue positive,negative VUS.
I'd love every patient to see agenetic counselor.
I know that that's notsustainable, but if we pull
(52:27):
ourselves off of the front endthe pretest counseling maybe
it's a little more sustainable.
But I just see that we're goingto have to go to this model.
We're going to have to supportour clinicians that are seeing
these patients, getting themcomfortable with doing some of
the pretest counseling,especially in the cancer space.
Unfortunately, a lot of thesepatients are very sick and we
(52:49):
need this information fortreatments for their family
members and getting it in atimely manner is huge because
these treatments are becomingearlier and earlier and earlier.
Like for ovarian cancer, weknow if somebody fails.
You know treatment.
You know their maintenancetherapy something like that
(53:09):
first-line maintenance could bea PARP inhibitor that's based on
their BRCA status Like that'sreally on their BRCA status.
That's really important to knowbecause we know these
treatments work really well.
So if we don't get thesepatients in for testing, we're
depriving them of answers theyreally need for important
treatments, and thinking aboutpatients that are sick, they
can't go to multipleappointments, or thinking of
(53:32):
disparities in care.
You have a patient that barelycan make it to their
appointments because they'reworking or whatnot, and then
you're asking them to do anotherappointment with somebody else.
So the long and the short of itis, I see, point of care
testing is going to have tohappen across the board in all
cancer types.
We as genetic counselors withinour institutions need to be
(53:53):
supportive and partners to theseclinicians, which I've already
seen happening and work reallyreally well.
We're really good at teachingright, like that's what our you
know when we went to grad schooland we learned our pre-test
conversation, that's like we gotit down pat.
We can teach anybody anything,and so I want us to start
(54:13):
thinking again out of the box.
We're not just educatingpatients, we are educating
providers who then see a crapton of patients.
And so by kind of that extenderthey're like genetic counseling
extenders they're going to bereally touching a lot of
patients that we wouldn't beable to see or they wouldn't
come to our appointment or theyno show.
(54:35):
So I think in general we justhave to get comfortable with the
, with letting go and saying Itrust the process, I trust this
doctor, we're going to have agood relationship.
If they have questions they cancall me um.
And making it so that it makessense for the patient makes
sense for the practice, um, seepoint-of-care testing models
(54:58):
already in pancreatic, in breast, in ovarian.
I haven't seen it yet inendometrial cancer, because
that's a newer indication.
We just had Penn Dana-Farber,penn Dana-Farber and Fox Chase
present on what they're doingwith their point of care testing
(55:19):
.
So this is definitely happening.
I think it becomes easier pointof care testing when you don't
have any genetic counselorsinvolved.
Anyway.
Now it's just getting thesedoctors to say, hey, this is in
your purview, now you got to doit.
You can't just refer out, referout, refer out because your
patients 30% of them are showingup for their appointments.
(55:41):
So it becomes interesting whenyou're at an institution, like
in a rural area or anon-academic institution, what
do you do there?
How do you empower theproviders to do point of care
testing?
That's where I think a lot ofthe industry MSLs come into play
to say, hey, I can support youif you have questions, if you
(56:04):
need help reviewing a result.
You're not sure what to do.
I can be your phone a friend sothat you feel comfortable doing
this, because referring outjust doesn't work.
There's like a six month waitlist at a lot of places.
So, yeah, I am really in favorof point of care testing.
I think that we just need toget comfortable with it.
(56:25):
But it's, it's.
We've been moving there.
We just now.
We need to move faster.
Matt Burgess (56:31):
In Australia we call it mainstreaming and we're
going mainstream sort of issuesat the moment.
And it's funny because itshouldn't really come as no
surprise that maybe as geneticcounselors we do feel this you
know uncomfortable feeling, aswe're talking about before, like
(56:51):
we want to sort of control theprocess or you know, and yes, we
used to be the gatekeepers ofgenetic testing and yeah, not
anymore.
And again, like one of the oneof the issues or one of the
things that has enabled this tohappen is, is money, like it's
(57:12):
just so much cheaper to orderthe genetic test now than what
it used to be.
Um, yeah, one thing that reallysort of surprised me as a
little aussie gc moving toamerica was when we, you know,
in families in australia, when apathogenic mutation is
(57:33):
identified and people are havingpredictive testing, the genetic
counselor does a lot to confirmthat mutation.
We try and get a positivecontrol from the lab oh yeah, oh
yeah you know we want a copy ofsomeone's positive results and
you know we'll contact thedifferent genetic services, but
(57:54):
because we have a population ofless than 30 million, it is
actually not that hard to do.
And then when I started workingfor a lab in America and
they're like, oh, we don't havetime for that, that costs too
much money.
No, we don't just check forthat mutation, we just do a full
panel, and it's like, oh, wow,medicine is evolving and it's
(58:17):
because it's so so much cheaperand quicker.
You know, yeah, just, insteadof spending those man hours like
trying to do that, it's justlike you know technology is the
answer.
Lauren Giannetti Sferrazz (58:29):
Let's just do it so do it the the
back in the day.
I would say when I was in gradschool we were taught to do that
method that that is being doneoutside the U?
S of.
Hey, do your due diligence,track down the positive, send it
to the same lab that thatpatient you know relative was
positive, blah, blah, blah.
In theory it sounds great.
A lot of people weren't beingtested back in the day because
(58:52):
the guidelines were so stringent.
So, yeah, I had time to do it.
Now, with these all-comerindications, nobody's got time
for that and also it just causesa delay in care.
You know, it's almost like youhave a captive audience.
When you have your patient infront of you, you're like, all
right, let's just get this going, let's get your blood and if
(59:17):
you have to wait like if theyhave to come back or they have
to get you more records thelikelihood of them doing the
test it just drops exponentially.
And then you're on the hook asa clinician.
You're like, oh crap, thisperson's really high risk.
And I got to follow up withthem every six months.
Hey, did you send your kit?
Are you going to do it up withthem every six months?
Hey, did you send your kid, areyou going to do it?
Forget it.
Forget it.
(59:42):
It just causes a nightmare.
And yeah, it's cheap enough.
Insurance will usually cover orthe labs will have some sort of
agreement with a veryreasonable out-of-pocket cost.
So it's not that we're doing itthe right way.
I mean, theoretically, what youare all doing is really the
best way to do it.
It just it's so time consumingand people don't follow up.
(01:00:04):
They're not as invested intheir their care.
I do find if they have cancerthey're more invested versus if
they don't have cancer.
They're like oh yeah, whatever,it's fine, depending on the
family, depending, you know.
If I was seeing somebody fromManhattan Upper East Side, yeah,
they would already bring theirstack of records to the
(01:00:24):
appointment and like have it allfigured out what lab they want
to go to?
Like it just depends on howmotivated the patient is too.
But I'd say more than enoughtimes I had patients that were
just like oh yeah, I'll thinkabout it or I'll get the record.
I still haven't been tested,probably 10 years later now.
Matt Burgess (01:00:40):
so it's, uh, definitely a different
philosophy well, I think thatmight be a good spot to to
finish up like, with that on ourmind, the phrase just do it.
Lauren Giannetti Sferrazza (01:00:54):
Just yeah, just do it.
Matt Burgess (01:00:57):
Well, thank you so much, Lauren.
I've really enjoyed catching upwith you and having this really
interesting conversation.
I wish you all the best, havinga baby tomorrow or in the next
couple of days.
Lauren Giannetti Sferrazza (01:01:08):
I would love that.
Thank you.
Matt Burgess (01:01:11):
And yeah, good luck for the future.
Lauren Giannetti Sferrazz (01:01:15):
Thank you.
Thanks so much for inviting meon.
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