February 25, 2025 • 45 mins
Join us for an insightful discussion that delves into the intricacies of genetic counseling through the lens of our guest, Dr. Gillian Hooker. We explore the domain's challenges, the importance of community, and the transformative power of empathy. • Introduction of Dr. Gillian Hooker and her role in genetic counseling • The impact of the COVID-19 pandemic on the genetic counseling profession • Personal stories of resilience and post-traumatic growth • The evolution of training programs in genetic counseling • Discussion on emotional challenges within the counseling settings • The necessity of adapting to the fast-paced world of healthcare • Insights into the functionality of the US healthcare system • Challenges genetic counselors face in billing and procedures • Closing reflections on the future of genetic counseling
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Matt Burgess (00:01):
Hello, my name is Matt Burgess and I am a genetic
counsellor.
I am an adjunct professor ingenetic counselling at Bay Path
University and I am the host ofthis podcast, demystifying
Genetics.
Join me today along with myguest, dr Gillian Hooker.
Gillian is a genetic counsellorworking in industry at Concert.
(00:22):
She works in policy andacademia and is involved in
genetic counselling research.
Join us for an interestingconversation about technology,
workforce and policy all relatedto genetic counselling.
Hello, gillian, and welcome toDemystifying Genetics.
Gillian Hooker (00:42):
Hey, matt, it's great to be with you today.
Matt Burgess (00:44):
Yeah, thank you.
I know I met you back in 2019at the NSGC in Salt Lake City
and I remember at the timethinking, oh, I really want
Gillian on my podcast.
So it has taken me about fiveyears to get there.
So thank you for your patience.
Gillian Hooker (01:03):
Only a half a decade, no big deal, and
actually I think I've gotsomething to declare to start
off with.
Matt Burgess (01:10):
I am feeling a little bit emotional.
I have just watched a couple ofepisodes of ER and it's the
final season and I've only got acouple of episodes to go and I
think they're pulling out all ofthe stops.
Did you watch ER back in theday?
Gillian Hooker (01:28):
Oh, yeah, when he dies, dr Doreen, or where was
it he dies in Hawaii.
That is like one of the saddestepisodes of television I have
ever watched in my life.
Yeah, it's so funny.
I didn't watch it when it wason TV live.
Matt Burgess (01:46):
Funny like I didn't watch it when it was like
on TV live.
But um, yeah, and I mean someof the episodes are sort of a
bit, you know, benign or boring,but then, oh, all of a sudden
they pull out these episodes.
Gillian Hooker (01:53):
It's like wow oh yeah, I was a huge fan back in
the day okay, so on that note.
Matt Burgess (02:02):
moving on, so you were the NSGC president a few
years ago and I guess it was alittle bit of a funny time, not
only for you of being presidentbut for the whole world.
What was it like being the headsort of honcho at NSGC for a
(02:26):
year?
Gillian Hooker (02:27):
I mean, I look back on that year with really
nothing but gratitude.
Honestly, I think that 2020 wasa year for all of us that we
felt so powerless about what washappening in the world and for
me, it really helped me cope tohave that role, both to focus on
and to keep me busy, but to dothings that really felt
(02:49):
meaningful and impactful for thegenetic, health and community,
certainly, but also for peoplethat we serve.
So to be able to put words towhat we were experiencing, to
try to use those words tomotivate, to move things forward
and have a platform for that isjust an experience for which I
(03:11):
am immensely, immensely grateful, not to mention that the
community it gave me, as I wassort of sitting at home in front
of my computer in a year when Iexpected to be traveling and
out there and meeting lots ofpeople.
I still got to meet lots ofpeople, but without the
traveling part of it.
Matt Burgess (03:29):
Yeah, yeah oh, it was kind of crazy, but I
recently went back and read yourum presidential address and you
know it's it's very personaland it's a great speech and I
really sort of encourage peopleto download it and have a look
(03:50):
at it.
But there were sort of a coupleof quotes that stood out or a
couple of things, and towardsthe end you were talking about
slaying dragons and sort of thechallenges that we have as
genetic counsellors.
And you, I challenge you tofeel, to sit with the angst and
the tension and to let it pullon your heart and on your mind.
(04:11):
Think about that energy drivingtowards and take a moment to
appreciate the fact that it is,with 99% probability, driving
you towards something, even ifyou are not sure what it is.
I thought, wow, that's reallypowerful and when I read it I
kind of was thinking the waythat I understand it is, are you
(04:36):
sort of telling us not likeit's easy to stay comfortable
and you know like it's up to usto sort of challenge ourselves
and, you know, takeopportunities and to move
forward?
Gillian Hooker (04:50):
yeah, at the time I was particularly enamored
with joseph samuel and theheroes burning um, and he, uh,
was a humanist and, you know, aliterary scholar who studied all
the myths of the world, right,and he described the hero's
journey as the sort of thecommon story of all the great
(05:13):
myths, all the great movies, allthe great myths going back
thousands of years, that itstarts with the hero living in
this world, maintaining thestatus quo and sort of
resistance to change, and thenat some point something compels
you to change or leads you tobelieve that change is mandatory
(05:34):
, right, that the status quo isnot good enough, and you embark
on this journey, right, and onthe journey there's a series of
trials and through these trialsyou grow and you learn, and I
believe that so fundamentally asbeing sort of a core part of
the human experience and I thinkit's sort of the human
(05:57):
superpower out there to growfrom challenges, to grow from
adversity.
I've been fascinated for a longtime time.
The idea of post-traumaticgrowth um, not in any way and I
think I said that in my, in myspeech too not to minimize, uh,
post-traumatic stress is alsobeing a very real thing or to
dismiss that, or to glorifypeople's trauma.
(06:20):
There's ugly parts of that too,but I think that there is also
growth in that and I personallygain a lot of inspiration from
that growth.
And so the slaying of thedragons is sort of the metaphor
for the challenges that you face, that are out there.
The adversity that we face.
That, I do believe, will makeus stronger over time, and what
(06:46):
we learn from the journey makesus wiser, makes us better, and
so when I'm not feeling hopeful,I take comfort in the fact that
there's something coming of itthat will make me stronger, that
will help me learn, and try totake a moment to sort of pause
and reflect on that as a way tolike find hope when it's not
(07:07):
immediately dependent.
Matt Burgess (07:11):
I find that really interesting because as genetic
counselors, you know a lot of uswork clinically and we have
that sort of um, you know the,the trauma associated with, uh,
you know, breaking bad news andworking with vulnerable people.
You know a lot of people sortof you know it's one of the
(07:31):
worst periods in their life, notfor everybody, but I think that
that sort of feeling can staywith us and you know we sort of
talk about in our training nottaking it home and how to to
deal with that.
Gillian Hooker (07:48):
But it's interesting or it's encouraging
to think of it from the otherside of like the related
post-traumatic growth and sortof what can evolve or emerge
from that yeah, and I and Iwould say that's a lot of the
reason I became a geneticcounselor was, you know, through
my own experiences of loss andgrief, seeing that, um, the
(08:11):
upside if there is an upside tothose experiences, was the
perspective that you gained inthose sort of life moments and
having the feeling that, thoughI wouldn't choose to experience
those things again just to getthat perspective, or if I could
go back and not experience themat all, I might make that choice
too.
But maybe genetic counselingwould be a way to stay connected
(08:33):
to some of that perspectivewithout having to experience it.
But maybe, working with peoplewho were experiencing some of
the greatest challenges life hasto offer, maybe some of their
perspectives would sort of ruboff on me as a genetic counselor
, and then I could carry thatforward.
And then you go home and yourroof is leaking, but maybe
you're able to put it inperspective and say it's not
(08:54):
really that bad right, like inthe grand scheme of life, there
are more important things.
And so I think it was very muchthat perspective that brought
me into genetic counseling wasreally a search for existential
meaning, because I was at apoint where I knew a lot about
genetics, but I wasn't findingit particularly meaningful.
I started, I got my PhD beforeI became a genetic counselor and
(09:16):
it was really in this likevisionary sort of delta wave
state meditative moment that theidea of being a genetic
counselor came to me as a way tofind meaning, and I think I've
subsequently read there'sactually evidence that that's
true, that meaning making is oneof the greatest antidotes to
burnout in our profession, and Iwould credit the work of Marian
(09:38):
Campion and Colleen Kalashu,who are actually studying this
stuff, as evidence for that, andI'm a huge believer in it.
Matt Burgess (09:50):
Excellent.
One of the other quotes thatyou or something else or a quote
from your speech that stood outto me was look at the
incredible army of allies aroundyou.
Look at the allies on socialmedia, online forums and local
genetic counselling community,your classmates from school,
your committees and your specialinterest groups and sort of.
(10:12):
I thought that was amazing,because the genetic counselling
community is quite a smallcommunity but we're quite active
, like I think that there aresort of beautiful connections
that we do kind of see or cansort of experience, especially
(10:32):
online, and you sort of talkabout genetic counselling being
a meaningful job.
Do you kind of see those twothings being connected?
Gillian Hooker (10:44):
Absolutely, absolutely.
I think in that line I wasthinking about both, like where
do we train our lens?
And it's easy to train our lensat the things, the statements,
the positions that make us angrysometimes and sort of get us
all worked up.
But you can also turn your lensto the places where you find
(11:04):
connection and you find meaning.
And you find meaning and youfind alums, specifically as a
place to garner strength.
And that has certainly been avery important part of my
experience and the relationshipsthat I've developed within our
profession and probably one ofthe greatest delights of my life
that I would, largely throughthe genetic counseling
(11:24):
profession, develop so manygreat, deep, meaningful
relationships across the countrywith people who never lived in
the same town as me, neverworked in the same place as me,
but because we had this sharedinterest and shared missions in
some ways or shared experiences,we're able to come together to
(11:49):
try to move things forward thatmight make a difference and also
just sort of, I guess,fellowship with one another.
Matt Burgess (12:00):
Yeah, yeah, and I think I know personally that
really helps with my feeling ofburnout.
I don't feel like I've sort ofhad like a level of burnout that
is really high, but I thinkthat we all kind of do feel, you
(12:20):
know, a little bit burnt outsometimes.
But then going to conferencesand meeting up with other
genetic counselors, I've justfound it really does recharge
the batteries.
Gillian Hooker (12:34):
Yeah, I believe that I mean, granted, I am an
extrovert, so, you know, Idefinitely want to acknowledge
the introverts out there who mayhave slightly different
experiences.
But I think, whether youidentify as an introvert or
extrovert, I think that humanconnection feeds the soul right,
and especially in times ofchallenge and in times of
(12:54):
struggle, like, human connectionis the silver lining, human
connection is the bright lightthat makes us feel better, and I
think it's incredibly important.
And we have a profession wherepeople opt into the profession
because they like humanconnection, right.
That to me, I think one of ourgreatest assets is a profession.
There's really two things to methat sort of are so in common
(13:21):
among folks who become geneticcounselors.
One is our desire for humanconnection and to serve other
humans or humanity, and two isour interest in science and
technology and appreciation ofthe fact that it's always
changing and it will be changing.
We all sort of bought into thatand that's a little bit unique.
There are a lot of people whoenter a profession with a very
(13:48):
sort of crystallized vision ofwhat it's going to look like or
what their job's going to looklike.
I think genetic counselors, incontrast, enter the profession
most of the time, accepting thatfive to 10 years from now it
could look very different thanit does today.
I entered the profession beforejust about anybody had ever had
their exome or their genomesequenced.
(14:09):
Right.
Lots and lots of people overmillions of people have now had
exomes and genome sequenced andwe kind of knew that that's
where it was going, but wedidn't know how we were going to
do it, how we were going todeliver it, what it was going to
look like, what it was going tolook like.
It felt very, very sort ofalmost science fiction-y.
And now these things are areality and I think, given that
(14:32):
experience, like we can see onthe horizon, gene therapy even
right, like how much, howdifferent that is in the last
five years from where it wasbefore.
That and it's unique and it'ssuch a wonderful consolation.
Yeah, acceptance of change andembracing of technology and the
desire to use that or to connectthat back to human beings is a
(14:56):
really cool thing about geneticcounselors.
Yeah.
Matt Burgess (15:00):
Yeah, gene therapy , like some conditions that were
sort of you know, fatal acouple of years ago and people
have like one dose and you know,almost cured.
It's amazing, but it's funny.
I was listening to you justthen and it's like, oh god, I
feel old.
Like you know, I do rememberthinking when I was at genetic
(15:24):
counseling school that some ofthis stuff did feel like science
fiction.
And I think you sort of comefrom a significant minority of
genetic counsellors that have aPhD in science and then go into
genetic counselling and then gointo genetic counselling.
(15:44):
I was sort of the opposite and Ikind of think, probably like a
lot of genetic counsellors thatyou know finish undergrad and
then go into genetic counselling.
But maybe I was just young ornaive, but I don't think I quite
appreciated at the time theadvances that would happen in
science.
Like I remember kind of talkingabout, you know, non-invasive
(16:07):
prenatal screening, and you knowthey were talking about this
technology and how it was comingand you know, being able to
look at the baby's chromosomesor the baby's genetic makeup in
mum's blood and I was like howcan they do that?
That's amazing, but it stilltook them about 10 years from
that time to do it.
So, yeah, I don't know, maybeyou go into genetic counselling
(16:33):
with a little bit more lifeexperience or much more science
experience.
We're a little bit moreprepared for that.
Is that something that you talkto your genetic counselling
students about?
Gillian Hooker (16:44):
Yeah, so it's interesting from a couple angles
.
So as a phd student, I actuallythink perhaps my thoughts or
beliefs about what we could dotechnologically were
oversimplified and overinflatedbecause I was so scientific
about it and I think back tolike 2006 when I was applying to
(17:05):
genetic counseling.
So I was like, oh, there's pgdwe can get rid of genetic
conditions, right, and there'sgene therapy coming down the
pike and we can just cure allthose things and like we have so
many more ways to intervenethan we've had before.
And then I got into my genetichealth and training and had this
(17:26):
like whoa, it's way morecomplicated than that sort of
moment.
And not only that, but likehuman beings are way more
complicated.
And the hardest thing for meabout transitioning from a PhD
into a genetic counselingprogram was this emotional,
(17:46):
human aspect of it and thatacademics for me had never been
so emotional and so raw and sohuman that I literally Friday
afternoons was like in thebathroom stall just letting the
tears out, like there was somuch.
And it was so like new to me myfirst semester, um in grad
school, of sort of adjusting tothat, and so when I talk to my
(18:09):
students I talk about thatadjustment.
Certainly, because I see it evenin our first years, even though
you know who came fromundergrad or came from a
different sort of background.
I think it's an intense part ofour training.
But it's also a really specialpart of our training and I think
our field arose in to addressthe complexities of these
(18:32):
decisions right.
When you look at the start ofthe Sarah Lawrence program in
1959 and why they created thatprogram, I think it was out of
recognition that the sort ofestablished practice of medicine
wasn't really trained in a wayto deal with the complex nuances
(18:53):
that were coming up withamniocentesis and reproductive
technologies and genetic testing.
And there were folks at SarahLawrence who were saying we're
going to need more than that.
We're going to need to take agroup of people and make them
think about it from a lot ofdifferent angles and really
train them to appreciate thenuance, to apply moral and
(19:16):
ethical logic and reasoning tothese really tricky
conversations that are going tohave to happen at the
intersection of science andhumanity.
And so I think that was myexperience coming into the
profession as a PhD student.
I think it's the experience ofmany folks coming into our
profession.
Matt Burgess (19:38):
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I think a lot about the geneticcounselling programs especially
as a, you know a professor in amaster's of genetic counselling
(20:27):
.
You know it's kind of like youknow the master, you know like
what is a master's degree hasn'treally changed over time.
You know like it's, you know,five or six semesters or it's
like two years of universitywork.
But if you think of how agenetic counselling master's has
changed and evolved, you knowfrom you know, 1969 to now, like
(20:49):
you know the amount of stuffthat we're trying to teach our
students in this limited time, Ikind of you know, on one hand I
want to give my students all ofthat information and everything
that I sort of felt that I, youknow all of my learnings.
I think, as you know, mostteachers, teachers do.
(21:10):
But then also I teach a subjectcalled introduction to genetic
counseling.
It's the first semester.
I I don't want to scare mystudents and it's like I'm not
expecting perfection.
Let's just sort of talk aboutthese skills and practice them
and put them together.
And you know this is a safetime to make mistakes.
(21:32):
And once we do it once, thenyou know we've laid the
foundation and then you can sortof add different things onto it
.
But is that sort of how youfeel as well?
Gillian Hooker (21:45):
yeah, I think so .
I have also taught intro togenetic counseling in various
contexts in the past and it is areally special time because
you're just trying to lay outlike what do you think coming in
new student a genetic counseloris, and you want to keep part
of that, because our studentsare coming in with big visions
that have incredible value forour profession.
(22:06):
Right, they are the future andyou don't want to
over-crystallize anyone'sthinking or lead them to believe
that there is like one rightway to be a genetic counselor.
I think that's incrediblydangerous, especially in a place
that, as we've been talkingabout, changes so rapidly.
Anyway, you need to preservethat flexibility, I think, both
(22:28):
at the level of like anindividual student give them the
room to grow and ideate anddefine for themselves what
they're going to do, whileproviding a framework within
which they can grow and learnfrom others' experiences.
And also, I think as aprofession, there's a risk in
over-institutionalizing orover-prescribing, like what we
(22:49):
teach, and I think that's a hardthing for us even right now to
think about that.
A part of the maturation of theprofession is development of
standards, right Standards,documents and practice-based
competencies and all of thesethings that define the
profession and we need those invarious ways to ensure quality
in our training, to ensurequality for the public, that the
(23:12):
people that we are certifyingas genetic counselors are there.
And this is genetic counseling,and this will always be genetic
(23:33):
counseling as it is, becausethere's a lot we haven't figured
out.
There's a lot we still dobecause we've always done it
that way and not necessarilybecause we know it's the best
way to do it.
Right, there are a lot ofresearch questions remaining
around the practice of geneticcounseling and how we deliver it
.
So it's a balance.
I guess you know how we do thatand it's a challenge for
(23:54):
educators, right, we havetextbooks that guide us and we
lean on that, but how do we both, you know, be credible
educators and share what we knowwhile leaving room for all that
will be known in the future?
Matt Burgess (24:15):
And I think on that point a little bit of
chatter that I've heard in thegenetic counselling education
sort of space is the role ofresearch in a Masters of Genetic
Counselling and when you thinkof a coursework Masters, usually
there's a research component,whether that is a mini thesis or
a capstone or, and so I think Isort of you know, just have
(24:40):
accepted that, but it's beeninteresting.
I've heard a couple of peoplesay, well, why like, why is
there research?
Like you know, can we producegood genetic counsellors that
are empathic and smart and ableto learn, you know, without
making them do a piece ofresearch that's just for the
(25:01):
sake of doing research that maynot even be published, or so I
know that you're sort ofinvolved in the research or like
the teaching of research ingenetic counseling.
Um, is what I've said reallycontroversial, or do you?
What do you think about that?
Gillian Hooker (25:20):
no, I think you're heading right into a
really interesting aspect ofgenetic health thinking right
now, which is that this is anarea where our standards are not
all that prescriptive aboutwhat programs have to do.
So it's one of the areas wherethere is, in my reading of it,
the most flexibility forprograms to decide what is going
to be our culture aroundresearch, what are our
(25:41):
requirements around research,what are we going to provide?
And I think it's actuallyreally useful to have variation
in the program.
I want to see lots of differentprograms doing lots of
different things and testing anditerating and figuring out what
works.
With regard to the researchspecifically, I think there are
some real core questions thatprograms need to ask when they
(26:04):
think about how much are wegoing to invest in our research
training and this is sort of howI've thought about it in the
context of the programs I'veworked with.
It's like where do we want ourgraduates to go and what's the
current culture of ourinstitution where we need this?
And the fact is, 40% of allgenetic counselors in the United
States practice in academicmedical centers today.
(26:25):
Now, some of that, I think, hasto do with the billing and
reimbursement challenges we have, where academic medical centers
are more readily able tosubsidize genetic counselor
salaries with grant money andwith research dollars, and so it
creates more jobs in thosesettings for genetic counselors.
One of the big metrics forsuccess in an academic medical
center is publishing papers andgetting grants right.
(26:48):
So in training students who aregoing to go work in academic
medical centers, it's helpful togive them that background and
give them that training tosucceed in that environment.
I think it adds to the valuethey bring as a new graduate
going into that program, andthat to me is a really good
argument for why we needprograms not all programs, but
(27:08):
we need some programs that havethat level of training to
prepare students for thatenvironment.
I also think for the programsthemselves.
If you're in an environmentthat really values research and
publications, if that's themilieu around your program and
what motivates sort of the deansand the folks around you and
(27:31):
you're looking to getrecognition for your program,
then research is one way to getrecognition within an
institution for a geneticcounseling program, and so there
can be strategic reasons tobuild that out as well.
But again, I don't think thatapplies to every program, and so
I like that there isn't toomuch prescriptiveness around
that.
I like that.
(27:51):
There isn't too muchprescriptiveness around that.
I am inspired by programswho've been able to build that
and really succeed in that area.
But I think there's also lotsof ways to be an inspiring
program and it is a challenge.
So I think you alluded to thistoo.
In two years we've got studentsin this country who are doing
the equivalent of a PhD at otherinstitutions right.
Sometimes by their own makingbecause they had questions they
(28:17):
were so passionate about and socommitted to that they just had
to see them through, andsometimes because the
opportunities are there to betaken.
Matt Burgess (28:24):
But that's a lot to pack into two years and you
know you got to consider alsothe sort of stress and emotional
costs that that may have forsome folks as well I think the
other pressure that the americanprograms have that we don't
have in other parts of the worldlike australasia and asia and
europe, united kingdom, is thepressure to be able to take the
(28:48):
boards and pass them.
You know, to be a certifiedgenetic counsellor in the United
States, you need to sit an examand you need to be able to pass
the exam.
So I think that there are sortof dueling pressures in the
course.
Gillian Hooker (29:05):
It's like okay, well, you know, let's teach
people about research andeverything that we can do, but
we also need to make sure thatthe students can pass their
board exams yeah, and and then,like we were saying before, also
keep your curriculum not sostatic that you're continuing to
keep up with changes in theprofession, changes in the
(29:26):
health care system, changes inscience, it science.
It's a really challenging jobto be a program director in 2024
.
So my heart goes out to them.
Yes.
Matt Burgess (29:38):
You mentioned money, so let's talk about money
a little bit.
As an Australian who lived inthe United States, I think you
know one of the things that Ifound really difficult and
really challenging and sort ofsurprising was how complicated
(30:00):
and complex the healthcaresystem is in the United States.
And I thought, as a welleducated person with a you know,
you know a graduate degreedegree and english as a first
language, I found it extremelydifficult and I just thought,
you know, they must, you know,I'm not surprised that there are
(30:20):
people that are reallystruggling like it is so complex
.
Um, I think one of the waysthat you know one of the things
that contributes to that is sortof like health insurance in
America and how that has sort ofevolved.
And you work at a companycalled Concert and what I'd like
(30:42):
to know like.
So it's a healthcare technologycompany and my impression is
that it's there to try andstreamline or make things easier
.
Gillian Hooker (30:54):
um, yeah, how do you do that?
Oh gosh, matt, I have like fiveresponses to everything.
I'm a little overwhelmed witheverything I want to say right
now.
So the first thing I want tosay is that when I was a genetic
counseling student and we hadone lecture on CPT the procedure
codes for billing services inthe United States and ICD the
(31:16):
diagnosis code I remember justwanting to stick my fingers in
my ears and go la, la, la, la laand hide under the chair and
say you know what?
I'm just going to be a researchgenetic counselor and I am
never going to do any of thisstuff because this is gross and
horrible and confusing and I'mjust going to stay in a research
(31:37):
bubble and get grants andthat's going to be my job for
the rest of my life.
Ironically, I love that so much.
Biggest surprise ever, um.
To the extent that the otherthing I said I never wanted to
do was I never um wanted towrite a book chapter.
Like there is no glory inwriting book chapters.
Right, it's a lot of work andespecially, you know, for a lot
(32:01):
of our books.
We don't have a huge populationof people buying those books,
so it's not like you make a tonof money writing a book chapter,
but I had the opportunity acouple of years ago to write a
chapter for the intro geneticcounseling book on the business
of health care, and I couldn'tresent.
I just couldn't resist the ideaof, like, arming first year
(32:24):
genetic counseling students withthis knowledge of how the
healthcare system actually works.
And so that book is coming out,like this month, the newest
edition of that, the guide togenetic counseling, and I'm
really really excited to seewhat people think of it.
We start out with a little bitof sort of comparative
(32:46):
healthcare systems and talkabout different systems around
the world very briefly therewasn't time to go into more
detail, I wish there was andthen we focus the rest of the
chapter on what's going on inthe US and very carefully call
out it's not because of anyperception of superiority of the
Us healthcare system, it's asmuch because of, just like you
called out, the, the complexity,um, and the brokenness of the
(33:10):
system, and and the belief thatif you understand, though, the
things that do work in thesystem and a little bit about
how the system works, you'regoing to be in a better position
and manipulate it and make itbetter, maybe, maybe not
manipulate in a bad way I shouldbe careful with that word but
to navigate it would be a betterway to say it.
You're going to be in a betterposition to navigate the
healthcare system and work tomake it better, and that's been
(33:32):
a lot of my belief and a lot ofthe why I have worked for a
technology company for almost 11years now.
I really thought I was going todabble in the private sector
for a year or two and then goback to academia, and that was
11 years ago.
And I am with the same companyand so committed so committed to
what we're doing to try tobuild a better infrastructure,
(33:53):
and believe firmly that it'spossible.
So we've done it before.
For folks who had prescriptionsin the US 25 years ago which is
probably maybe a minority ofyour listeners given the really
young age of a lot of geneticcounselors these days but
anybody who had a prescriptionand remembers more than 25 years
ago, it used to be on a pieceof paper written, usually by a
(34:14):
doctor.
That piece of paper got lost,it got photocopied and abused.
It couldn't be read.
People used to make jokes aboutdoctors handwriting.
Nobody cares anymore about thatbecause everything is
electronic and doctors just saywhat pharmacy do you go to?
And you say I go to the CVS onMain Street and 30 minutes later
your prescription is ready foryou and, key, key detail, they
(34:36):
actually tell you at thepharmacy if it's covered and how
much it costs.
Wouldn't it be amazing ifgenetic tests happen the same
way, if a provider ordering thetest could tell their patient
genetic counselor, doctor,whoever this is covered by your
insurance and you're going tohave a $20 copay, instead of
going through the huge, longspiels that we go through today
(34:56):
to try to answer that questionfor patients and a lot of
doctors won't even do it fortheir patients, which I am
convinced, erodes trust in thesystem, erodes trust in genetic
testing and, if we can make itbetter, it's a key part of
improving access and improvingtransparency and improving trust
, and that's really what we'vebeen committed to is creating a
future where those answers areeasy and clear and
(35:19):
straightforward for everyone thepayers themselves, for the
laboratories.
We need to get paid for theproviders genetic counselors,
doctors, nurses, pa to delivergenetic tests and, most
importantly, for the patients tostand to benefit from those
tests, and a lot of them are notgetting those tests today
that's complicated.
Matt Burgess (35:36):
I've got it sitting here as an outsider
saying good luck with that.
That that's complicated.
But you know, in my mind I'msort of comparing it to the
Australian system where, youknow, we have universal health
care and when I was in America Iwas like, oh god, universal
health care is so much better.
And so, you know, like peoplejust get a test, and but now
(35:58):
that I'm back and I'm back inhealth care in Australia, I'm
sort of comparing andcontrasting and it's like, okay,
yes, a lot of people are seenin public health and our taxes
that we pay through working gotowards healthcare, and a lot of
the time people are getting thegenetic test.
(36:19):
That is completely, 100%covered.
But you know, there's a finiteamount of money and I think that
, because we're sort of offeringsomething to everyone, everyone
is getting less than what isavailable.
And it's like, oh, okay, I seethat there is a drawback.
(36:39):
Now, like you know, I thinkthat there are some great tests
out there that are reallyexpensive and people just are
not getting access to them.
And it's like, okay, how how dowe change that in our sort of
system of health care?
And I think part of the, thesolution, is technology and you
know that brings sort of greatefficiencies and transparencies
(37:03):
and you know cuts out theredundancy which all has health
care cost savings.
Gillian Hooker (37:11):
A hundred percent.
That's exactly what I was goingto say is technology.
So on the actual testing side,like we need a system that
incentivizes faster, better,cheaper Right, can you run this
test for less money so that morepeople can get access to it?
Can you run a better test forless money so that more people
can get better testing andaffordable price?
And I also very much believe toyour comments about public
(37:33):
health.
It's important for us torecognize and we talk about this
a lot at concert it's all ourmoney, like whether it comes out
of your pocket, out of yourpaycheck or out of your taxes,
it's ultimately your money.
It it comes out of your pocket,out of your paycheck or out of
your taxes, it's ultimately yourmoney.
It's just some of it is morevisible to you than others.
And we should all be reallyangry at the bureaucracy of the
healthcare system, whichprobably exists in all
healthcare systems, but in theUnited States it's about a half
(37:56):
a trillion dollars a year spenton the administrative aspects of
healthcare, on the billing andreimbursement aspect of
healthcare, and these arehealthcare costs that have no
benefit to any of us, and thisis things like fire and appeals,
management and things that wespend time on in the interest of
(38:18):
getting paid, that don'tactually have health care
benefits.
That are just a part of thisreally broken system, and I
think that is what we at Concert, as a technology company, want
to remove a lot of inefficiency.
So we write policies.
We got into writing coveredpolicies for tests, not so much
because we wanted to be thedecision makers about what gets
(38:39):
paid and what's not, but we werereading policies written by
various insurance companies andtrying to digitize them, and we
saw that they were being writtento route everybody to manual
review by a medical director ata health clinic.
Right, nothing was beingwritten to give you a clear yes
or no answer, and so it wasnever going to be automated.
And we saw the opportunity of atechnology company to write
(38:59):
policy with an eye towardsautomation so that people could
get automated answers yes, no,answers about coverage, um, and
I think that's a big piece of it.
How do we, how do we keepengineering on that to make
things more clear, moretransparent and more efficient?
Matt Burgess (39:16):
it.
It kind of makes me smilebecause I also work for a
healthcare technology companytrap generap Gene.
Thank you Trap Gene forsponsoring this podcast.
But I remember when the CEO gotin touch with me and sort of
offered me the job, I kind ofwas like, but I'm not that good
at IT, I'm not that good atcomputers, like why me?
(39:40):
But I didn't sort of appreciateat the time the my sort of um.
My skills were that I wasclinical and what I realized
when I joined the company wasthere was a huge need for
someone who is clinical, who'sactually worked um in a clinic,
(40:06):
and I think I yeah, I didn'tquite appreciate how relevant or
important that's, like I justtook them for granted and it's
like, you know, a lot of geneticcounselors have these skills.
I didn't really think about it,but then it's oh, that is a
huge benefit and it just made methink, you know, like genetic,
(40:27):
like we can save the world, likeour skills, like our programs
are really good.
We, you know, get greattraining.
And it's something that I sawin America that more and more
companies that were not ingenetic counselling per se were
working out how good geneticcounsellors were and how they
could work in their businesses.
(40:48):
And I'm still hopeful that thatwill happen in Australia.
It hasn't quite happened yet, Idon't think.
Gillian Hooker (40:53):
But yeah it's like, is that sort of how you
fit into the clinical part ofconcert and yeah, yeah, I often
joke that, like the reason I gotmy job at concert was they were
a company making software tohelp people order genetic tests,
but nobody in the company hadever ordered a test before.
(41:13):
So I met that criteria and itseemed like a good fit.
I was like I think I could helpthese folks.
But I also think the otherthing that's in there is, like
you said, you weren't thattechnical but at the same time
you understand a lot of, I'msure, really technical details
of tests that the vast majorityof this planet does not.
(41:36):
So I would probably challengeyou.
You're probably more technicalthan you're giving yourself
credit for there, even prior toworking for a technology company
, and the term I often use andthis goes back to what I was
saying about the unique skillsof genetic counselors I think
we're a profession that selectsfor what I call technical
bravery, which is I may not haveever seen this technology
(41:59):
before, but I'm not going to runaway screaming right, if you
have to change your videoconferencing platform from Zoom
to Teams, is it stressful foryou?
I would argue that most geneticcounselors can manage the stress
of changing platforms, adoptinga new software platform, better
than the average person in thepopulation, because I think we
(42:20):
selected into this professionbecause of an interest in
science and technology, and Ithink some of that interest
extends beyond genetics, right,it just happens to be that the
genetic counseling profession isthe profession that exists at
that intersection, and that'sdefinitely what I'm seeing with
my team at Concert.
We have expanded our scope wellbeyond germline genetics of the
(42:41):
kinds of content we develop,the policies we write.
We're now writing policies forinfectious disease, which, oh,
by the way, is being doneincreasingly on next generation
sequencing platforms, right,which we are well familiar with.
And so, even though folks maybeweren't trained in infectious
disease, like I would argue,we're still among those best
(43:01):
positions to tackle some of theproblems around the
implementation of those tests.
We understand the technology ofthe tests.
We understand the healthcaresystem to your point about how
tests get ordered, how they flowthrough the clinic.
There's a lot of these thingsthat we learn in training
astronaut counselors and ourwork as astronaut counselors
that are applicable well beyondthe field of genetics.
(43:23):
It leads to a reallyinteresting question around
scope of practice.
Right Clinically, it'simportant to maintain your scope
of practice in a tight way forlicensure and to define the
profession Outside of the clinic.
I think what we're seeing inthe US and probably
internationally, is geneticcounselors working in new
environments and technologycompanies like ours and
(43:46):
laboratories and regulatoryspaces where their scope is
extending well beyond genetics,and I think that's a really
interesting phenomenon that'sworth thinking about, like where
that goes, god I agree, and Ihave thought do we not call
(44:06):
ourselves genetic counselors?
Matt Burgess (44:08):
so then that means that we can do more?
Or do we keep the title geneticcounselor but change our scope
of practice?
And then, but if we do that,what sort of training do we need
?
And then, who certifies that?
Yes, I think you raised a veryinteresting point.
Gillian Hooker (44:28):
I think that's exactly the question, matt, and
I think that's the question thatour profession is facing right
now, which is do we grow intothose spaces where there is a
need for people like us whounderstand the technology,
understand the science and aregood at communicating it with
other people?
Do we, as a profession, sort ofgrow into that direction, or do
(44:49):
we allow other professions togrow up around us or grow into
that space, or do we?
Is there some hybrid where wework to develop new training
programs sort of adjacent to andalongside genetic counseling?
I've been working with theInstitute for Genomics Workforce
at Sarah Lawrence over the lastfew years on their external
(45:09):
advisory committee and these area lot of the questions they're
getting into in really cool waysand I think it's so fun to
think about.
Matt Burgess (45:16):
Technology bravery .
You know, julian, I have likeabout 10 other things that I
wanted to cover today, but Ithink that's a beautiful place
to leave it.
It was so good seeing yourshiny eyes and your beautiful
smile again.
Gillian Hooker (45:30):
Thank you so much for being a guest on the
program and yeah, thank you ohman, I feel like I could keep
talking, so maybe someday you'llhave me back.
This has been a really funconversation and the time really
just flew by.
So thanks so much for having me.
It was great.
Matt Burgess (45:46):
Excellent, thank you.
Hello, my name is Matt Burgess and I am a genetic
counsellor.
I am an adjunct professor ingenetic counselling at Bay Path
University and I am the host ofthis podcast, demystifying
Genetics.
Join me today along with myguest, dr Gillian Hooker.
Gillian is a genetic counsellorworking in industry at Concert.
(00:22):
She works in policy andacademia and is involved in
genetic counselling research.
Join us for an interestingconversation about technology,
workforce and policy all relatedto genetic counselling.
Hello, gillian, and welcome toDemystifying Genetics.
Gillian Hooker (00:42):
Hey, matt, it's great to be with you today.
Matt Burgess (00:44):
Yeah, thank you.
I know I met you back in 2019at the NSGC in Salt Lake City
and I remember at the timethinking, oh, I really want
Gillian on my podcast.
So it has taken me about fiveyears to get there.
So thank you for your patience.
Gillian Hooker (01:03):
Only a half a decade, no big deal, and
actually I think I've gotsomething to declare to start
off with.
Matt Burgess (01:10):
I am feeling a little bit emotional.
I have just watched a couple ofepisodes of ER and it's the
final season and I've only got acouple of episodes to go and I
think they're pulling out all ofthe stops.
Did you watch ER back in theday?
Gillian Hooker (01:28):
Oh, yeah, when he dies, dr Doreen, or where was
it he dies in Hawaii.
That is like one of the saddestepisodes of television I have
ever watched in my life.
Yeah, it's so funny.
I didn't watch it when it wason TV live.
Matt Burgess (01:46):
Funny like I didn't watch it when it was like
on TV live.
But um, yeah, and I mean someof the episodes are sort of a
bit, you know, benign or boring,but then, oh, all of a sudden
they pull out these episodes.
Gillian Hooker (01:53):
It's like wow oh yeah, I was a huge fan back in
the day okay, so on that note.
Matt Burgess (02:02):
moving on, so you were the NSGC president a few
years ago and I guess it was alittle bit of a funny time, not
only for you of being presidentbut for the whole world.
What was it like being the headsort of honcho at NSGC for a
(02:26):
year?
Gillian Hooker (02:27):
I mean, I look back on that year with really
nothing but gratitude.
Honestly, I think that 2020 wasa year for all of us that we
felt so powerless about what washappening in the world and for
me, it really helped me cope tohave that role, both to focus on
and to keep me busy, but to dothings that really felt
(02:49):
meaningful and impactful for thegenetic, health and community,
certainly, but also for peoplethat we serve.
So to be able to put words towhat we were experiencing, to
try to use those words tomotivate, to move things forward
and have a platform for that isjust an experience for which I
(03:11):
am immensely, immensely grateful, not to mention that the
community it gave me, as I wassort of sitting at home in front
of my computer in a year when Iexpected to be traveling and
out there and meeting lots ofpeople.
I still got to meet lots ofpeople, but without the
traveling part of it.
Matt Burgess (03:29):
Yeah, yeah oh, it was kind of crazy, but I
recently went back and read yourum presidential address and you
know it's it's very personaland it's a great speech and I
really sort of encourage peopleto download it and have a look
(03:50):
at it.
But there were sort of a coupleof quotes that stood out or a
couple of things, and towardsthe end you were talking about
slaying dragons and sort of thechallenges that we have as
genetic counsellors.
And you, I challenge you tofeel, to sit with the angst and
the tension and to let it pullon your heart and on your mind.
(04:11):
Think about that energy drivingtowards and take a moment to
appreciate the fact that it is,with 99% probability, driving
you towards something, even ifyou are not sure what it is.
I thought, wow, that's reallypowerful and when I read it I
kind of was thinking the waythat I understand it is, are you
(04:36):
sort of telling us not likeit's easy to stay comfortable
and you know like it's up to usto sort of challenge ourselves
and, you know, takeopportunities and to move
forward?
Gillian Hooker (04:50):
yeah, at the time I was particularly enamored
with joseph samuel and theheroes burning um, and he, uh,
was a humanist and, you know, aliterary scholar who studied all
the myths of the world, right,and he described the hero's
journey as the sort of thecommon story of all the great
(05:13):
myths, all the great movies, allthe great myths going back
thousands of years, that itstarts with the hero living in
this world, maintaining thestatus quo and sort of
resistance to change, and thenat some point something compels
you to change or leads you tobelieve that change is mandatory
(05:34):
, right, that the status quo isnot good enough, and you embark
on this journey, right, and onthe journey there's a series of
trials and through these trialsyou grow and you learn, and I
believe that so fundamentally asbeing sort of a core part of
the human experience and I thinkit's sort of the human
(05:57):
superpower out there to growfrom challenges, to grow from
adversity.
I've been fascinated for a longtime time.
The idea of post-traumaticgrowth um, not in any way and I
think I said that in my, in myspeech too not to minimize, uh,
post-traumatic stress is alsobeing a very real thing or to
dismiss that, or to glorifypeople's trauma.
(06:20):
There's ugly parts of that too,but I think that there is also
growth in that and I personallygain a lot of inspiration from
that growth.
And so the slaying of thedragons is sort of the metaphor
for the challenges that you face, that are out there.
The adversity that we face.
That, I do believe, will makeus stronger over time, and what
(06:46):
we learn from the journey makesus wiser, makes us better, and
so when I'm not feeling hopeful,I take comfort in the fact that
there's something coming of itthat will make me stronger, that
will help me learn, and try totake a moment to sort of pause
and reflect on that as a way tolike find hope when it's not
(07:07):
immediately dependent.
Matt Burgess (07:11):
I find that really interesting because as genetic
counselors, you know a lot of uswork clinically and we have
that sort of um, you know the,the trauma associated with, uh,
you know, breaking bad news andworking with vulnerable people.
You know a lot of people sortof you know it's one of the
(07:31):
worst periods in their life, notfor everybody, but I think that
that sort of feeling can staywith us and you know we sort of
talk about in our training nottaking it home and how to to
deal with that.
Gillian Hooker (07:48):
But it's interesting or it's encouraging
to think of it from the otherside of like the related
post-traumatic growth and sortof what can evolve or emerge
from that yeah, and I and Iwould say that's a lot of the
reason I became a geneticcounselor was, you know, through
my own experiences of loss andgrief, seeing that, um, the
(08:11):
upside if there is an upside tothose experiences, was the
perspective that you gained inthose sort of life moments and
having the feeling that, thoughI wouldn't choose to experience
those things again just to getthat perspective, or if I could
go back and not experience themat all, I might make that choice
too.
But maybe genetic counselingwould be a way to stay connected
(08:33):
to some of that perspectivewithout having to experience it.
But maybe, working with peoplewho were experiencing some of
the greatest challenges life hasto offer, maybe some of their
perspectives would sort of ruboff on me as a genetic counselor
, and then I could carry thatforward.
And then you go home and yourroof is leaking, but maybe
you're able to put it inperspective and say it's not
(08:54):
really that bad right, like inthe grand scheme of life, there
are more important things.
And so I think it was very muchthat perspective that brought
me into genetic counseling wasreally a search for existential
meaning, because I was at apoint where I knew a lot about
genetics, but I wasn't findingit particularly meaningful.
I started, I got my PhD beforeI became a genetic counselor and
(09:16):
it was really in this likevisionary sort of delta wave
state meditative moment that theidea of being a genetic
counselor came to me as a way tofind meaning, and I think I've
subsequently read there'sactually evidence that that's
true, that meaning making is oneof the greatest antidotes to
burnout in our profession, and Iwould credit the work of Marian
(09:38):
Campion and Colleen Kalashu,who are actually studying this
stuff, as evidence for that, andI'm a huge believer in it.
Matt Burgess (09:50):
Excellent.
One of the other quotes thatyou or something else or a quote
from your speech that stood outto me was look at the
incredible army of allies aroundyou.
Look at the allies on socialmedia, online forums and local
genetic counselling community,your classmates from school,
your committees and your specialinterest groups and sort of.
(10:12):
I thought that was amazing,because the genetic counselling
community is quite a smallcommunity but we're quite active
, like I think that there aresort of beautiful connections
that we do kind of see or cansort of experience, especially
(10:32):
online, and you sort of talkabout genetic counselling being
a meaningful job.
Do you kind of see those twothings being connected?
Gillian Hooker (10:44):
Absolutely, absolutely.
I think in that line I wasthinking about both, like where
do we train our lens?
And it's easy to train our lensat the things, the statements,
the positions that make us angrysometimes and sort of get us
all worked up.
But you can also turn your lensto the places where you find
(11:04):
connection and you find meaning.
And you find meaning and youfind alums, specifically as a
place to garner strength.
And that has certainly been avery important part of my
experience and the relationshipsthat I've developed within our
profession and probably one ofthe greatest delights of my life
that I would, largely throughthe genetic counseling
(11:24):
profession, develop so manygreat, deep, meaningful
relationships across the countrywith people who never lived in
the same town as me, neverworked in the same place as me,
but because we had this sharedinterest and shared missions in
some ways or shared experiences,we're able to come together to
(11:49):
try to move things forward thatmight make a difference and also
just sort of, I guess,fellowship with one another.
Matt Burgess (12:00):
Yeah, yeah, and I think I know personally that
really helps with my feeling ofburnout.
I don't feel like I've sort ofhad like a level of burnout that
is really high, but I thinkthat we all kind of do feel, you
(12:20):
know, a little bit burnt outsometimes.
But then going to conferencesand meeting up with other
genetic counselors, I've justfound it really does recharge
the batteries.
Gillian Hooker (12:34):
Yeah, I believe that I mean, granted, I am an
extrovert, so, you know, Idefinitely want to acknowledge
the introverts out there who mayhave slightly different
experiences.
But I think, whether youidentify as an introvert or
extrovert, I think that humanconnection feeds the soul right,
and especially in times ofchallenge and in times of
(12:54):
struggle, like, human connectionis the silver lining, human
connection is the bright lightthat makes us feel better, and I
think it's incredibly important.
And we have a profession wherepeople opt into the profession
because they like humanconnection, right.
That to me, I think one of ourgreatest assets is a profession.
There's really two things to methat sort of are so in common
(13:21):
among folks who become geneticcounselors.
One is our desire for humanconnection and to serve other
humans or humanity, and two isour interest in science and
technology and appreciation ofthe fact that it's always
changing and it will be changing.
We all sort of bought into thatand that's a little bit unique.
There are a lot of people whoenter a profession with a very
(13:48):
sort of crystallized vision ofwhat it's going to look like or
what their job's going to looklike.
I think genetic counselors, incontrast, enter the profession
most of the time, accepting thatfive to 10 years from now it
could look very different thanit does today.
I entered the profession beforejust about anybody had ever had
their exome or their genomesequenced.
(14:09):
Right.
Lots and lots of people overmillions of people have now had
exomes and genome sequenced andwe kind of knew that that's
where it was going, but wedidn't know how we were going to
do it, how we were going todeliver it, what it was going to
look like, what it was going tolook like.
It felt very, very sort ofalmost science fiction-y.
And now these things are areality and I think, given that
(14:32):
experience, like we can see onthe horizon, gene therapy even
right, like how much, howdifferent that is in the last
five years from where it wasbefore.
That and it's unique and it'ssuch a wonderful consolation.
Yeah, acceptance of change andembracing of technology and the
desire to use that or to connectthat back to human beings is a
(14:56):
really cool thing about geneticcounselors.
Yeah.
Matt Burgess (15:00):
Yeah, gene therapy , like some conditions that were
sort of you know, fatal acouple of years ago and people
have like one dose and you know,almost cured.
It's amazing, but it's funny.
I was listening to you justthen and it's like, oh god, I
feel old.
Like you know, I do rememberthinking when I was at genetic
(15:24):
counseling school that some ofthis stuff did feel like science
fiction.
And I think you sort of comefrom a significant minority of
genetic counsellors that have aPhD in science and then go into
genetic counselling and then gointo genetic counselling.
(15:44):
I was sort of the opposite and Ikind of think, probably like a
lot of genetic counsellors thatyou know finish undergrad and
then go into genetic counselling.
But maybe I was just young ornaive, but I don't think I quite
appreciated at the time theadvances that would happen in
science.
Like I remember kind of talkingabout, you know, non-invasive
(16:07):
prenatal screening, and you knowthey were talking about this
technology and how it was comingand you know, being able to
look at the baby's chromosomesor the baby's genetic makeup in
mum's blood and I was like howcan they do that?
That's amazing, but it stilltook them about 10 years from
that time to do it.
So, yeah, I don't know, maybeyou go into genetic counselling
(16:33):
with a little bit more lifeexperience or much more science
experience.
We're a little bit moreprepared for that.
Is that something that you talkto your genetic counselling
students about?
Gillian Hooker (16:44):
Yeah, so it's interesting from a couple angles
.
So as a phd student, I actuallythink perhaps my thoughts or
beliefs about what we could dotechnologically were
oversimplified and overinflatedbecause I was so scientific
about it and I think back tolike 2006 when I was applying to
(17:05):
genetic counseling.
So I was like, oh, there's pgdwe can get rid of genetic
conditions, right, and there'sgene therapy coming down the
pike and we can just cure allthose things and like we have so
many more ways to intervenethan we've had before.
And then I got into my genetichealth and training and had this
(17:26):
like whoa, it's way morecomplicated than that sort of
moment.
And not only that, but likehuman beings are way more
complicated.
And the hardest thing for meabout transitioning from a PhD
into a genetic counselingprogram was this emotional,
(17:46):
human aspect of it and thatacademics for me had never been
so emotional and so raw and sohuman that I literally Friday
afternoons was like in thebathroom stall just letting the
tears out, like there was somuch.
And it was so like new to me myfirst semester, um in grad
school, of sort of adjusting tothat, and so when I talk to my
(18:09):
students I talk about thatadjustment.
Certainly, because I see it evenin our first years, even though
you know who came fromundergrad or came from a
different sort of background.
I think it's an intense part ofour training.
But it's also a really specialpart of our training and I think
our field arose in to addressthe complexities of these
(18:32):
decisions right.
When you look at the start ofthe Sarah Lawrence program in
1959 and why they created thatprogram, I think it was out of
recognition that the sort ofestablished practice of medicine
wasn't really trained in a wayto deal with the complex nuances
(18:53):
that were coming up withamniocentesis and reproductive
technologies and genetic testing.
And there were folks at SarahLawrence who were saying we're
going to need more than that.
We're going to need to take agroup of people and make them
think about it from a lot ofdifferent angles and really
train them to appreciate thenuance, to apply moral and
(19:16):
ethical logic and reasoning tothese really tricky
conversations that are going tohave to happen at the
intersection of science andhumanity.
And so I think that was myexperience coming into the
profession as a PhD student.
I think it's the experience ofmany folks coming into our
profession.
Matt Burgess (19:38):
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I think a lot about the geneticcounselling programs especially
as a, you know a professor in amaster's of genetic counselling
(20:27):
.
You know it's kind of like youknow the master, you know like
what is a master's degree hasn'treally changed over time.
You know like it's, you know,five or six semesters or it's
like two years of universitywork.
But if you think of how agenetic counselling master's has
changed and evolved, you knowfrom you know, 1969 to now, like
(20:49):
you know the amount of stuffthat we're trying to teach our
students in this limited time, Ikind of you know, on one hand I
want to give my students all ofthat information and everything
that I sort of felt that I, youknow all of my learnings.
I think, as you know, mostteachers, teachers do.
(21:10):
But then also I teach a subjectcalled introduction to genetic
counseling.
It's the first semester.
I I don't want to scare mystudents and it's like I'm not
expecting perfection.
Let's just sort of talk aboutthese skills and practice them
and put them together.
And you know this is a safetime to make mistakes.
(21:32):
And once we do it once, thenyou know we've laid the
foundation and then you can sortof add different things onto it
.
But is that sort of how youfeel as well?
Gillian Hooker (21:45):
yeah, I think so .
I have also taught intro togenetic counseling in various
contexts in the past and it is areally special time because
you're just trying to lay outlike what do you think coming in
new student a genetic counseloris, and you want to keep part
of that, because our studentsare coming in with big visions
that have incredible value forour profession.
(22:06):
Right, they are the future andyou don't want to
over-crystallize anyone'sthinking or lead them to believe
that there is like one rightway to be a genetic counselor.
I think that's incrediblydangerous, especially in a place
that, as we've been talkingabout, changes so rapidly.
Anyway, you need to preservethat flexibility, I think, both
(22:28):
at the level of like anindividual student give them the
room to grow and ideate anddefine for themselves what
they're going to do, whileproviding a framework within
which they can grow and learnfrom others' experiences.
And also, I think as aprofession, there's a risk in
over-institutionalizing orover-prescribing, like what we
(22:49):
teach, and I think that's a hardthing for us even right now to
think about that.
A part of the maturation of theprofession is development of
standards, right Standards,documents and practice-based
competencies and all of thesethings that define the
profession and we need those invarious ways to ensure quality
in our training, to ensurequality for the public, that the
(23:12):
people that we are certifyingas genetic counselors are there.
And this is genetic counseling,and this will always be genetic
(23:33):
counseling as it is, becausethere's a lot we haven't figured
out.
There's a lot we still dobecause we've always done it
that way and not necessarilybecause we know it's the best
way to do it.
Right, there are a lot ofresearch questions remaining
around the practice of geneticcounseling and how we deliver it
.
So it's a balance.
I guess you know how we do thatand it's a challenge for
(23:54):
educators, right, we havetextbooks that guide us and we
lean on that, but how do we both, you know, be credible
educators and share what we knowwhile leaving room for all that
will be known in the future?
Matt Burgess (24:15):
And I think on that point a little bit of
chatter that I've heard in thegenetic counselling education
sort of space is the role ofresearch in a Masters of Genetic
Counselling and when you thinkof a coursework Masters, usually
there's a research component,whether that is a mini thesis or
a capstone or, and so I think Isort of you know, just have
(24:40):
accepted that, but it's beeninteresting.
I've heard a couple of peoplesay, well, why like, why is
there research?
Like you know, can we producegood genetic counsellors that
are empathic and smart and ableto learn, you know, without
making them do a piece ofresearch that's just for the
(25:01):
sake of doing research that maynot even be published, or so I
know that you're sort ofinvolved in the research or like
the teaching of research ingenetic counseling.
Um, is what I've said reallycontroversial, or do you?
What do you think about that?
Gillian Hooker (25:20):
no, I think you're heading right into a
really interesting aspect ofgenetic health thinking right
now, which is that this is anarea where our standards are not
all that prescriptive aboutwhat programs have to do.
So it's one of the areas wherethere is, in my reading of it,
the most flexibility forprograms to decide what is going
to be our culture aroundresearch, what are our
(25:41):
requirements around research,what are we going to provide?
And I think it's actuallyreally useful to have variation
in the program.
I want to see lots of differentprograms doing lots of
different things and testing anditerating and figuring out what
works.
With regard to the researchspecifically, I think there are
some real core questions thatprograms need to ask when they
(26:04):
think about how much are wegoing to invest in our research
training and this is sort of howI've thought about it in the
context of the programs I'veworked with.
It's like where do we want ourgraduates to go and what's the
current culture of ourinstitution where we need this?
And the fact is, 40% of allgenetic counselors in the United
States practice in academicmedical centers today.
(26:25):
Now, some of that, I think, hasto do with the billing and
reimbursement challenges we have, where academic medical centers
are more readily able tosubsidize genetic counselor
salaries with grant money andwith research dollars, and so it
creates more jobs in thosesettings for genetic counselors.
One of the big metrics forsuccess in an academic medical
center is publishing papers andgetting grants right.
(26:48):
So in training students who aregoing to go work in academic
medical centers, it's helpful togive them that background and
give them that training tosucceed in that environment.
I think it adds to the valuethey bring as a new graduate
going into that program, andthat to me is a really good
argument for why we needprograms not all programs, but
(27:08):
we need some programs that havethat level of training to
prepare students for thatenvironment.
I also think for the programsthemselves.
If you're in an environmentthat really values research and
publications, if that's themilieu around your program and
what motivates sort of the deansand the folks around you and
(27:31):
you're looking to getrecognition for your program,
then research is one way to getrecognition within an
institution for a geneticcounseling program, and so there
can be strategic reasons tobuild that out as well.
But again, I don't think thatapplies to every program, and so
I like that there isn't toomuch prescriptiveness around
that.
I like that.
(27:51):
There isn't too muchprescriptiveness around that.
I am inspired by programswho've been able to build that
and really succeed in that area.
But I think there's also lotsof ways to be an inspiring
program and it is a challenge.
So I think you alluded to thistoo.
In two years we've got studentsin this country who are doing
the equivalent of a PhD at otherinstitutions right.
Sometimes by their own makingbecause they had questions they
(28:17):
were so passionate about and socommitted to that they just had
to see them through, andsometimes because the
opportunities are there to betaken.
Matt Burgess (28:24):
But that's a lot to pack into two years and you
know you got to consider alsothe sort of stress and emotional
costs that that may have forsome folks as well I think the
other pressure that the americanprograms have that we don't
have in other parts of the worldlike australasia and asia and
europe, united kingdom, is thepressure to be able to take the
(28:48):
boards and pass them.
You know, to be a certifiedgenetic counsellor in the United
States, you need to sit an examand you need to be able to pass
the exam.
So I think that there are sortof dueling pressures in the
course.
Gillian Hooker (29:05):
It's like okay, well, you know, let's teach
people about research andeverything that we can do, but
we also need to make sure thatthe students can pass their
board exams yeah, and and then,like we were saying before, also
keep your curriculum not sostatic that you're continuing to
keep up with changes in theprofession, changes in the
(29:26):
health care system, changes inscience, it science.
It's a really challenging jobto be a program director in 2024
.
So my heart goes out to them.
Yes.
Matt Burgess (29:38):
You mentioned money, so let's talk about money
a little bit.
As an Australian who lived inthe United States, I think you
know one of the things that Ifound really difficult and
really challenging and sort ofsurprising was how complicated
(30:00):
and complex the healthcaresystem is in the United States.
And I thought, as a welleducated person with a you know,
you know a graduate degreedegree and english as a first
language, I found it extremelydifficult and I just thought,
you know, they must, you know,I'm not surprised that there are
(30:20):
people that are reallystruggling like it is so complex
.
Um, I think one of the waysthat you know one of the things
that contributes to that is sortof like health insurance in
America and how that has sort ofevolved.
And you work at a companycalled Concert and what I'd like
(30:42):
to know like.
So it's a healthcare technologycompany and my impression is
that it's there to try andstreamline or make things easier
.
Gillian Hooker (30:54):
um, yeah, how do you do that?
Oh gosh, matt, I have like fiveresponses to everything.
I'm a little overwhelmed witheverything I want to say right
now.
So the first thing I want tosay is that when I was a genetic
counseling student and we hadone lecture on CPT the procedure
codes for billing services inthe United States and ICD the
(31:16):
diagnosis code I remember justwanting to stick my fingers in
my ears and go la, la, la, la laand hide under the chair and
say you know what?
I'm just going to be a researchgenetic counselor and I am
never going to do any of thisstuff because this is gross and
horrible and confusing and I'mjust going to stay in a research
(31:37):
bubble and get grants andthat's going to be my job for
the rest of my life.
Ironically, I love that so much.
Biggest surprise ever, um.
To the extent that the otherthing I said I never wanted to
do was I never um wanted towrite a book chapter.
Like there is no glory inwriting book chapters.
Right, it's a lot of work andespecially, you know, for a lot
(32:01):
of our books.
We don't have a huge populationof people buying those books,
so it's not like you make a tonof money writing a book chapter,
but I had the opportunity acouple of years ago to write a
chapter for the intro geneticcounseling book on the business
of health care, and I couldn'tresent.
I just couldn't resist the ideaof, like, arming first year
(32:24):
genetic counseling students withthis knowledge of how the
healthcare system actually works.
And so that book is coming out,like this month, the newest
edition of that, the guide togenetic counseling, and I'm
really really excited to seewhat people think of it.
We start out with a little bitof sort of comparative
(32:46):
healthcare systems and talkabout different systems around
the world very briefly therewasn't time to go into more
detail, I wish there was andthen we focus the rest of the
chapter on what's going on inthe US and very carefully call
out it's not because of anyperception of superiority of the
Us healthcare system, it's asmuch because of, just like you
called out, the, the complexity,um, and the brokenness of the
(33:10):
system, and and the belief thatif you understand, though, the
things that do work in thesystem and a little bit about
how the system works, you'regoing to be in a better position
and manipulate it and make itbetter, maybe, maybe not
manipulate in a bad way I shouldbe careful with that word but
to navigate it would be a betterway to say it.
You're going to be in a betterposition to navigate the
healthcare system and work tomake it better, and that's been
(33:32):
a lot of my belief and a lot ofthe why I have worked for a
technology company for almost 11years now.
I really thought I was going todabble in the private sector
for a year or two and then goback to academia, and that was
11 years ago.
And I am with the same companyand so committed so committed to
what we're doing to try tobuild a better infrastructure,
(33:53):
and believe firmly that it'spossible.
So we've done it before.
For folks who had prescriptionsin the US 25 years ago which is
probably maybe a minority ofyour listeners given the really
young age of a lot of geneticcounselors these days but
anybody who had a prescriptionand remembers more than 25 years
ago, it used to be on a pieceof paper written, usually by a
(34:14):
doctor.
That piece of paper got lost,it got photocopied and abused.
It couldn't be read.
People used to make jokes aboutdoctors handwriting.
Nobody cares anymore about thatbecause everything is
electronic and doctors just saywhat pharmacy do you go to?
And you say I go to the CVS onMain Street and 30 minutes later
your prescription is ready foryou and, key, key detail, they
(34:36):
actually tell you at thepharmacy if it's covered and how
much it costs.
Wouldn't it be amazing ifgenetic tests happen the same
way, if a provider ordering thetest could tell their patient
genetic counselor, doctor,whoever this is covered by your
insurance and you're going tohave a $20 copay, instead of
going through the huge, longspiels that we go through today
(34:56):
to try to answer that questionfor patients and a lot of
doctors won't even do it fortheir patients, which I am
convinced, erodes trust in thesystem, erodes trust in genetic
testing and, if we can make itbetter, it's a key part of
improving access and improvingtransparency and improving trust
, and that's really what we'vebeen committed to is creating a
future where those answers areeasy and clear and
(35:19):
straightforward for everyone thepayers themselves, for the
laboratories.
We need to get paid for theproviders genetic counselors,
doctors, nurses, pa to delivergenetic tests and, most
importantly, for the patients tostand to benefit from those
tests, and a lot of them are notgetting those tests today
that's complicated.
Matt Burgess (35:36):
I've got it sitting here as an outsider
saying good luck with that.
That that's complicated.
But you know, in my mind I'msort of comparing it to the
Australian system where, youknow, we have universal health
care and when I was in America Iwas like, oh god, universal
health care is so much better.
And so, you know, like peoplejust get a test, and but now
(35:58):
that I'm back and I'm back inhealth care in Australia, I'm
sort of comparing andcontrasting and it's like, okay,
yes, a lot of people are seenin public health and our taxes
that we pay through working gotowards healthcare, and a lot of
the time people are getting thegenetic test.
(36:19):
That is completely, 100%covered.
But you know, there's a finiteamount of money and I think that
, because we're sort of offeringsomething to everyone, everyone
is getting less than what isavailable.
And it's like, oh, okay, I seethat there is a drawback.
(36:39):
Now, like you know, I thinkthat there are some great tests
out there that are reallyexpensive and people just are
not getting access to them.
And it's like, okay, how how dowe change that in our sort of
system of health care?
And I think part of the, thesolution, is technology and you
know that brings sort of greatefficiencies and transparencies
(37:03):
and you know cuts out theredundancy which all has health
care cost savings.
Gillian Hooker (37:11):
A hundred percent.
That's exactly what I was goingto say is technology.
So on the actual testing side,like we need a system that
incentivizes faster, better,cheaper Right, can you run this
test for less money so that morepeople can get access to it?
Can you run a better test forless money so that more people
can get better testing andaffordable price?
And I also very much believe toyour comments about public
(37:33):
health.
It's important for us torecognize and we talk about this
a lot at concert it's all ourmoney, like whether it comes out
of your pocket, out of yourpaycheck or out of your taxes,
it's ultimately your money.
It it comes out of your pocket,out of your paycheck or out of
your taxes, it's ultimately yourmoney.
It's just some of it is morevisible to you than others.
And we should all be reallyangry at the bureaucracy of the
healthcare system, whichprobably exists in all
healthcare systems, but in theUnited States it's about a half
(37:56):
a trillion dollars a year spenton the administrative aspects of
healthcare, on the billing andreimbursement aspect of
healthcare, and these arehealthcare costs that have no
benefit to any of us, and thisis things like fire and appeals,
management and things that wespend time on in the interest of
(38:18):
getting paid, that don'tactually have health care
benefits.
That are just a part of thisreally broken system, and I
think that is what we at Concert, as a technology company, want
to remove a lot of inefficiency.
So we write policies.
We got into writing coveredpolicies for tests, not so much
because we wanted to be thedecision makers about what gets
(38:39):
paid and what's not, but we werereading policies written by
various insurance companies andtrying to digitize them, and we
saw that they were being writtento route everybody to manual
review by a medical director ata health clinic.
Right, nothing was beingwritten to give you a clear yes
or no answer, and so it wasnever going to be automated.
And we saw the opportunity of atechnology company to write
(38:59):
policy with an eye towardsautomation so that people could
get automated answers yes, no,answers about coverage, um, and
I think that's a big piece of it.
How do we, how do we keepengineering on that to make
things more clear, moretransparent and more efficient?
Matt Burgess (39:16):
it.
It kind of makes me smilebecause I also work for a
healthcare technology companytrap generap Gene.
Thank you Trap Gene forsponsoring this podcast.
But I remember when the CEO gotin touch with me and sort of
offered me the job, I kind ofwas like, but I'm not that good
at IT, I'm not that good atcomputers, like why me?
(39:40):
But I didn't sort of appreciateat the time the my sort of um.
My skills were that I wasclinical and what I realized
when I joined the company wasthere was a huge need for
someone who is clinical, who'sactually worked um in a clinic,
(40:06):
and I think I yeah, I didn'tquite appreciate how relevant or
important that's, like I justtook them for granted and it's
like, you know, a lot of geneticcounselors have these skills.
I didn't really think about it,but then it's oh, that is a
huge benefit and it just made methink, you know, like genetic,
(40:27):
like we can save the world, likeour skills, like our programs
are really good.
We, you know, get greattraining.
And it's something that I sawin America that more and more
companies that were not ingenetic counselling per se were
working out how good geneticcounsellors were and how they
could work in their businesses.
(40:48):
And I'm still hopeful that thatwill happen in Australia.
It hasn't quite happened yet, Idon't think.
Gillian Hooker (40:53):
But yeah it's like, is that sort of how you
fit into the clinical part ofconcert and yeah, yeah, I often
joke that, like the reason I gotmy job at concert was they were
a company making software tohelp people order genetic tests,
but nobody in the company hadever ordered a test before.
(41:13):
So I met that criteria and itseemed like a good fit.
I was like I think I could helpthese folks.
But I also think the otherthing that's in there is, like
you said, you weren't thattechnical but at the same time
you understand a lot of, I'msure, really technical details
of tests that the vast majorityof this planet does not.
(41:36):
So I would probably challengeyou.
You're probably more technicalthan you're giving yourself
credit for there, even prior toworking for a technology company
, and the term I often use andthis goes back to what I was
saying about the unique skillsof genetic counselors I think
we're a profession that selectsfor what I call technical
bravery, which is I may not haveever seen this technology
(41:59):
before, but I'm not going to runaway screaming right, if you
have to change your videoconferencing platform from Zoom
to Teams, is it stressful foryou?
I would argue that most geneticcounselors can manage the stress
of changing platforms, adoptinga new software platform, better
than the average person in thepopulation, because I think we
(42:20):
selected into this professionbecause of an interest in
science and technology, and Ithink some of that interest
extends beyond genetics, right,it just happens to be that the
genetic counseling profession isthe profession that exists at
that intersection, and that'sdefinitely what I'm seeing with
my team at Concert.
We have expanded our scope wellbeyond germline genetics of the
(42:41):
kinds of content we develop,the policies we write.
We're now writing policies forinfectious disease, which, oh,
by the way, is being doneincreasingly on next generation
sequencing platforms, right,which we are well familiar with.
And so, even though folks maybeweren't trained in infectious
disease, like I would argue,we're still among those best
(43:01):
positions to tackle some of theproblems around the
implementation of those tests.
We understand the technology ofthe tests.
We understand the healthcaresystem to your point about how
tests get ordered, how they flowthrough the clinic.
There's a lot of these thingsthat we learn in training
astronaut counselors and ourwork as astronaut counselors
that are applicable well beyondthe field of genetics.
(43:23):
It leads to a reallyinteresting question around
scope of practice.
Right Clinically, it'simportant to maintain your scope
of practice in a tight way forlicensure and to define the
profession Outside of the clinic.
I think what we're seeing inthe US and probably
internationally, is geneticcounselors working in new
environments and technologycompanies like ours and
(43:46):
laboratories and regulatoryspaces where their scope is
extending well beyond genetics,and I think that's a really
interesting phenomenon that'sworth thinking about, like where
that goes, god I agree, and Ihave thought do we not call
(44:06):
ourselves genetic counselors?
Matt Burgess (44:08):
so then that means that we can do more?
Or do we keep the title geneticcounselor but change our scope
of practice?
And then, but if we do that,what sort of training do we need
?
And then, who certifies that?
Yes, I think you raised a veryinteresting point.
Gillian Hooker (44:28):
I think that's exactly the question, matt, and
I think that's the question thatour profession is facing right
now, which is do we grow intothose spaces where there is a
need for people like us whounderstand the technology,
understand the science and aregood at communicating it with
other people?
Do we, as a profession, sort ofgrow into that direction, or do
(44:49):
we allow other professions togrow up around us or grow into
that space, or do we?
Is there some hybrid where wework to develop new training
programs sort of adjacent to andalongside genetic counseling?
I've been working with theInstitute for Genomics Workforce
at Sarah Lawrence over the lastfew years on their external
(45:09):
advisory committee and these area lot of the questions they're
getting into in really cool waysand I think it's so fun to
think about.
Matt Burgess (45:16):
Technology bravery .
You know, julian, I have likeabout 10 other things that I
wanted to cover today, but Ithink that's a beautiful place
to leave it.
It was so good seeing yourshiny eyes and your beautiful
smile again.
Gillian Hooker (45:30):
Thank you so much for being a guest on the
program and yeah, thank you ohman, I feel like I could keep
talking, so maybe someday you'llhave me back.
This has been a really funconversation and the time really
just flew by.
So thanks so much for having me.
It was great.
Matt Burgess (45:46):
Excellent, thank you.
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