August 8, 2023 • 35 mins
Prepare to be immersed in the intriguing world of genetic counseling as we navigate its intersection with law, policy, and public health, with our esteemed guest, Julia Mansour. This episode promises to expand your horizons, offering insights into Julia’s career transition from law to genetic counseling, her stance on the controversial position statement from the Human Genetic Society of Australasia, and her unique experiences living in Tasmania. Our conversation doesn't stop there! Ever wondered how the worlds of public health and law intertwine in real-life scenarios? Enter the realm of petrol sniffing prevention in remote Australia and the fight against Ebola, where Julia’s experiences beautifully demonstrate the power of collaboration across communities, governments, and private entities. Be prepared to question the black and white nature of rules as we explore the ethical challenges of genetic testing. This episode isn't just an interview; it's a journey into the heart of public health, law, and genetic counseling, with lessons and stories that are sure to leave you enriched and enlightened. https://hobartwomensspecialists.com.au/staff/julia-monsour/
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Matt Burgess (00:01):
Hello and welcome to Demystify and Genetics.
I'm your host, matt Burgess,and on today's show I have with
me Julia Mansour, geneticcounselor.
We talk about policy, we talkabout the law, we go into issues
regarding public health andpublic versus private health and
(00:21):
how all of that relates togenetic counseling.
So enjoy, okay, hello, julia,How's it going?
Welcome to Demystify andGenetics.
Julia Mansour (00:34):
Thank you.
Thank you for having me.
I'm feeling very unqualified tobe here, but I'm honored and
excited to talk to you.
Matt Burgess (00:42):
I look you in very safe hands, so I see pics of
you on socials.
It looks like you're having agreat time in Tasmania.
Is that where you are now?
Julia Mansour (00:56):
Yes, I'm sitting here in Hobart, nipaluna,
tasmania, and it's the earlymorning and as we talk this
morning, I'm going to bewatching the sunrise through my
window, which is one of myfavorite things of the day to
watch the sunrise and it'sgorgeous from here.
So, yeah, I am very spoiled.
I live in a very beautifulplace.
Matt Burgess (01:18):
Beautiful.
You're an early bird like me,by the sounds of it.
Julia Mansour (01:21):
Yes, I am.
Matt Burgess (01:23):
And how is life going in Tassie?
Julia Mansour (01:26):
Yeah, life's great in Tassie.
Yeah, I swim many mornings aweek like three to four mornings
a week and yeah, I've got avery strong affinity with the
ocean and the water.
So it's a perfect place for meto be on a small island where
there's water all around.
So, yeah, it's my thing.
(01:46):
I have to get in the wateralmost every day and even if I
don't swim properly, I just getin.
Matt Burgess (01:52):
Good for you, it's awesome, and there's some good
wine in Tasmania as well, sothat helps.
Julia Mansour (01:59):
There is definitely good wine.
I'm trying to give myself alittle rest from the wine at the
moment after lots ofoverindulgence.
We had my festival here for thewinter solstice just the last
couple of weeks and so, yeah,there was a bit of happiness and
craziness and partying going onover that time.
(02:19):
That's what it's all about, so,yeah.
Matt Burgess (02:22):
Oh, sounds good.
Now, first things first.
I would actually like to saythank you.
When I was thinking about ustalking together, I sort of was
reminded about when I firstgraduated and when I got my
first job as a genetic counselorall those years ago, and you
were one of the geneticcounselors that I sort of hung
(02:44):
around with and it wasn't thatmuch, I don't think, but in
hindsight I think that it wasactually very helpful.
Like, I think I wasoverconfident, I thought I knew
it all, I was ready to go, andwhen I spent time with you, I
just think you sort of groundedme a little bit and I think that
I was better off for that.
(03:06):
So have you been a mentorbefore, or have you had any
mentor training, or is thatsomething that you've sort of
been involved with in the past?
Julia Mansour (03:16):
Haven't officially been a mentor before.
I just want to say thank you inresponse to that.
When I think back, I thinkabout early days and I was
thinking about the fact thatI've known you for quite a long
time and from when we were bothsort of baby GCs although I
think I was only a couple ofyears ahead of you in terms of
(03:37):
my training and when I first wasqualified.
But I've always loved havingthat connection with you and
meeting up with you atconferences and seeing you
around, and I remember when youwere living not far away and we
could catch up, even socially attimes.
So, yeah, it's been good, andthat's what I love about where
(04:00):
I'm at in the profession at themoment is that I've got these
long standing professionalcollegiate relationships and it
means a lot because I think as aprofessional, we've grown
through a lot and so asindividuals we've grown through
a lot in that way as well.
So, yeah, I haven't officiallydone a lot of mentoring I've
(04:21):
actually but I love sharing myknowledge and my experience with
people.
I think in some ways it's kindof all storytelling and it's
what our clients and patients dowith us as well, and so I sort
of love sharing and so I'm happyto do that.
I'm always generous in that wayand I've benefited from some
(04:42):
amazing mentors.
I reckon there's people likeJack Goldblatt in Western
Australia who was the clinicalgenesis and director of that
service.
He's been a lifelong mentor forme, like he, I reckon, has been
a referee for almost every jobI've been for.
You know someone I keep intouch with and you know we stay
(05:02):
connected about what's happeningin our lives in general.
You know and you know peoplelike Joe Burke here in Tasmania,
who really gave me a shot whenI was coming back into the
profession after a break andwho's really supported me.
You know in many ways so, but Ithink a lot of it goes both
(05:23):
ways, as you kind of havehighlighted.
Yeah, yeah, that's great.
Matt Burgess (05:28):
Oh good, I think I really like when we sort of
catch up at conferences and, youknow, when everybody walks into
the room and we see each otherfor the first time, especially
in Australia where there's only,you know, such a limited number
of genetic counselors that wekind of squeal because we get so
excited.
So yeah, I really like that.
Oh, so I saw that a few yearsago you published a paper you
(05:53):
were one of the authors on apaper called Human Genetic
Society of Australasia PositionStatement Predictive Testing and
Symptomatic Genetic Testing inAdults and Children.
Now this is a huge topic and Iguess sort of the takeaway in
the article was unless there's adirect medical benefit, the
(06:16):
advice is not to offer testingto children for genetic
conditions that affect adults.
And you know, as I get older andthe more experience I get, I
know when I first started as agenetic counselor I thought,
okay, that's the rule.
It's black and white.
The answers.
No, we're not going to dotesting, that's it.
(06:38):
And I guess I just think it'sfunny that my opinion has
changed a little bit and I thinkthat it's not always black and
white.
And were you able to kind ofget some of that nuance into
this paper, do you think?
Julia Mansour (06:55):
I think we did try to do that.
I mean, I think, just to give abit of context to where that
paper came from.
I sit on the Education, ethicsand Social Issues Committee of
the Human Genetic Society ofAustralasia and I was the
co-chair of that committee for acouple of years, which is a
huge honour and has been anamazing group of people to work
(07:17):
with.
I love the work that we do.
We get to be on the well.
We actually have licence.
I get to be watching foremerging issues that we feel
that our profession and societyneeds to be aware of and issues
that we think we wonder whetherthere should be a position
(07:39):
statement around or a policy orposition around.
This article actually came froma review of a previous position
statement and I think, as yousay, it does try to create a
space where and we go to some ofthat in the article creating an
understanding about how do youassess someone's competence or
(08:02):
decision-making capacity if theydon't meet the adult kind of
position.
So we talk about people who aremaybe under 18 or minors and how
you would assess whether theyare really understanding what
they are getting into, and thereis a legal framework for that,
(08:23):
that's in common law around howyou make some of those
assessments.
So we try to build that in sothat it's not a blanket yes or
no.
And I've certainly clinicallybeen in situations where you've
got quite an astute young personin front of you who knows that
they want this test and for youto refuse it is one
(08:46):
paternalistic, but twopotentially damaging to that
person who, if they don't getthe information that they feel
that they need, there could bepotential psychological distress
to them, like they are in aposition where to know is better
than not to know, and so who amI to stand in the way of that?
But my job is to check out howare they going to manage this
(09:07):
information and do they have thematurity and competence to
incorporate that and manage that?
And I you know it all comesdown to duty of care.
So that's what we try to buildinto that statement.
Matt Burgess (09:21):
Yeah, that is complex and I think you
highlighted a lot of the issuesthere, because we need to be
advocates for our clients and wewant the best for them and
there is a duty of care in ourjobs in looking after our
clients.
But then we need to balancethat with that paternalism and I
(09:42):
guess it's hard for us to sayyes, you can, or no, you can't,
and maybe we're not the bestpeople to be making that
decision for people.
But yeah, I see that it is acomplicated, complex issue and
I'm glad that you mentioned thelegal issue there, because
you're a genetic counselor whohas actually studied law.
(10:06):
So in your background youstarted as a lab scientist and
then you became a geneticcounselor.
But what took you into studyinglaw?
Julia Mansour (10:17):
I think probably as we, most of us would have
done in our training and I'vegot to say I changed back in the
late 1990s, so it was prettyearly days in terms of genetic
counseling in Australia.
We were, we were alerted to thepotential of genetic
discrimination as a result of,you know, in terms of things
(10:38):
like insurance and jobs andthings like that, and I think it
was you know, the Gatiga moviecame out around that time, maybe
a scene after, and so it wassort of something that I thought
a lot about and that I wasconcerned about and wanted to
have a better understandingabout.
So I started law sort of morewith the view of getting a
(11:02):
better understanding about legalframeworks and wanting to
understand what the law was andhow it could possibly help
people if we were in a situationwhere, you know, this issue of
genetic discrimination reallytook off and became a really big
thing.
And so what was interestingwhen I studied law was I
(11:22):
actually was really interestedin tort law, which is the law of
wrongs, where you have thingslike issues of negligence and
say things like medicalnegligence comes up in that
space and issues around privacylaw come up in tort law.
So it became kind of it.
Through the study my interestbroadened and, I guess, became a
(11:46):
little more philosophical andtheoretical than practical, even
though I did go on and do mytraining to be admitted to the
court.
So if I decided to go back andget myself a baby lawyer job and
practice I could do that.
It's very exciting andsomething I think about doing at
(12:07):
times, but it might be like aretirement job.
Matt Burgess (12:11):
Okay, because I was going to ask you about that.
So in the Australian legalcontext you can do a law degree
but then to actually practiceyou need to go on and do the
graduate diploma of law or legalstudies.
And is that?
Sort of similar to like sittingthe bar exam or like.
Julia Mansour (12:34):
Effectively, yes, so it's what gets you on the
register as a lawyer in a courtor in a Supreme Court.
So my arm on the Supreme Courtof ACT.
But it becomes sort of mutuallyrecognised through the other
states and territories.
But then to actually practiceyou need a practicing
certificate and to get apracticing certificate you need
to work in a legal firm undersomeone with a practicing
(12:56):
certificate.
So you need to do a couple ofyears training in that context
before you can get a practicingcertificate.
So to practice on your own,there's still another couple of
steps.
But you won't get there ifyou're not admitted to the court
.
Matt Burgess (13:11):
Okay, and so was there a time where you thought
that maybe you would go intofull time law, or did you always
think, oh no, health is sort ofwhere you wanted to stay?
Julia Mansour (13:23):
Yeah, actually.
So through my graduate diplomaof legal practice I actually
worked in.
I did some of my training inlegal aid, which I loved.
So I think I've always I'malways going to work in a role
that has some sort of communityfocus to some extent or helping
people on that level.
Yeah, I loved the work in legalaid and it was really similar
(13:47):
to counselling in many wayslistening to people and
listening to their issues andhelping them navigate away
forward and giving them optionsabout which way they could go.
You know, that's what it'sabout.
So I, when I was making thedecision to come back to genetic
counselling or I've beenworking in the Commonwealth
(14:07):
government in sort of big policyprogramme space and wanting to
get back into sort of you know,working more with people on an
individual level I was equallyapplying for genetic counselling
jobs as legal jobs.
So I was kind of thinking Ijust jumped whichever way came
up first.
So, yeah, I'm pretty happy withwhere I landed.
I'm very happy with where Ilanded.
(14:28):
But yeah, I did go through aphase at that point where I
thought maybe this is the time.
Matt Burgess (14:33):
Okay, and was that sort of like a fatalistic thing
, like did you put your, yourfate in the hands of Mother
Nature, or like you were justhoping the universe would guide
you, or yeah, thank you, Lee.
Julia Mansour (14:46):
Like I kind of was just applying for things you
know all different types ofthings and I was going to go
with, yeah, the thing that madethe most sense, and that's
something I've done since I mademy baby.
So I made decisions based onwhat feels right and it works
for me.
Matt Burgess (15:05):
Yeah, oh, that's beautiful, oh good and it's
great, because I can see a bigsmile on your face while you say
that.
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Do you need to draw pedigreesand save them from your patients
and store their data?
Well, trackgene may be able tohelp you with this.
Trackgene is used by hospitals,genetics clinics and private
(15:28):
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For more information or to booka demonstration, go to
trackgenecom.
(15:50):
Now, sort of looking throughyour CV, it's obvious that
you're a passionate publichealth advocate and I guess you
know there's people from allover the world that listen to
this podcast.
So maybe I'll sort of brieflydescribe public health or how it
works in Australia.
But we have a universal healthcare system in Australia and
(16:11):
basically what that means is,when we work and we pay taxes, a
proportion of that tax or thatmoney goes to the public health
system and if you are Australianor you're a permanent resident
and you qualify for a Medicarecard, you have access to public
health.
Now, it's not a perfect system,but I think it works pretty
(16:36):
well.
Do you think that that is afair sort of characterization of
public health in Australia.
Julia Mansour (16:44):
Yeah, the public health system and access to
health services.
It is universal and while thesystem is very stressed at the
moment, it's extremely stressed.
There is access for everybodyand that's really important, and
it's regardless of whether youcan afford pay or not.
There is access.
Matt Burgess (17:06):
Yeah, and I guess sort of one of the interesting
factors that maybe peopleoutside the system don't quite
realise or understand is thatthe private health system works
quite closely with the publichealth system and if you pay
into the private health systemthat sort of can take some of
(17:26):
that pressure off and they sortof work in tandem so the people
that can afford it can sort ofhelp prop up the system for the
people that maybe can't affordit.
Julia Mansour (17:38):
Yes, that's right .
That's how it works.
Matt Burgess (17:41):
So like one of your jobs was prevention of
petrol sniffing and that seemslike such a difficult sort of
controversial, highly chargedkind of area, Can you tell us a
(18:02):
little bit about your experiencein that?
Julia Mansour (18:05):
Yeah, so that was a really amazing experience
that I had working in theCommonwealth Government
Department of Health.
So that's effectively probablythe equivalent in other
countries is like the Ministryof Health.
So that particular programmewas an Indigenous Health
(18:26):
programme.
So it was a programme that wasfocused on reducing harm to
young Indigenous people, becausewe knew there was evidence that
there were young Indigenouspeople out in remote parts of
Australia mostly who were usingpetrol as a substance to get
(18:49):
high.
So petrol sniffing to get high.
But the concern was that thetype of fuel that they were
sniffing, which was often almostlike an aviation fuel, actually
was significantly damagingtheir brain.
So it wasn't just an interimyou know, let's get high and
have a bit of fun and no majordamage.
(19:11):
It was causing significant andpermanent damage.
So there was an initiativestarted, I think early 2000s,
and the federal governmentfunded it which was actually to
replace lettuce fuel in all ofthese remote areas with what we
call low aromatic fuel, and somy job in the Commonwealth
(19:34):
Department was to manage a teamof people and to work with a
number of different stakeholders, including Aboriginal
communities on the ground,service station owners, to
actually change their supply offuel from lettuce fuel or an
(19:55):
even normal unleaded fuel, tolow aromatic fuel so that if the
sniffing were to occur then itwouldn't be harmful because
there was the, it was the well,and it actually wouldn't be
attractive because the lowaromatic fuel was not desirable
for sniffing.
So it was a health preventionmeasure and it was really highly
(20:19):
successful.
We reduced over time, reducedthe rate of sniffing
significantly and that was byreplacing the fuel in pretty
much you know, all of theservice stations where there
were issues and you know througha broad chain of outback kind
of travel in Australia and itwas amazing.
We did lots of likecommunication campaigns.
(20:41):
We got to work with people onthe ground.
I did some amazing work in termsof legal negotiations with big
major fuel companies like Shelland BP, which is really out
there.
So, yeah, it was took me into awhole heap of different areas
of work.
I ended up sitting inParliament while we passed a
bill called the Low AromaticFuel Bill to bring in a law to
(21:06):
actually, you know, ban aromaticfuel in certain areas.
It was, yeah, pretty cool.
It was an amazing experience.
Matt Burgess (21:13):
That's fantastic, julia kicking goals.
So I'm guessing that youroffice was in Canberra, but did
you get to travel to outbackAustralia in that role?
Julia Mansour (21:24):
Yeah, so I got to go to our springs and Cunapedi
and I got to travel to I'mpretty sure I went to Darwin
with that job.
I didn't get as much outback onthe ground as I would have
liked to really remote areas,but I did get to go to a few
different conferences and thingsto talk about what we were
(21:47):
doing and to promote the programand the objectives.
Yeah, it was awesome.
Matt Burgess (21:54):
Wow, and then it looks like you moved on to the
public health emergency responseto Ebola.
Was there like a big sort ofneed for that in Australia, or
was it sort of interactions withAfrica where, like, ebola was
more common, or what sort of?
How did that job work?
Julia Mansour (22:16):
Yeah, it was a huge Australian government
interagency effort and it wasvery much about the need to
support the humanitarian crisisin West Africa.
With that, it was occurring asa result of the Ebola outbreak
and I was working in the healthtask force the Ministry of
(22:38):
Health Task Force but we workedvery, very closely with
Department for Foreign Affairsand Trade and also Department of
Agriculture and it was reallyabout there were significant
calls for Australians to supportthe effort on the ground in
West Africa, but there wereconcerns about the risk to
Australia that if we had healthworkers going over there, then
what was the risk of them comingback and bringing Ebola back to
(23:02):
Australia and how did we managethat?
How would we measure them?
Plays that allow Australia tofulfill its objectives in
providing that support and aidon a humanitarian basis but
protecting our people andprotecting the rest of the
population here.
And so my job there in thehealth task force was actually
(23:23):
to provide some support andadvice from public health
framework and I worked veryclosely with you know
organisations that people wouldknow a lot more about now, which
is the Australian HealthProtection Principal Committee,
hppc, who were making a lot ofthe decisions through the COVID
experience.
So that's how I, you know, gotto meet a lot of those people
(23:45):
and that taking advice from HPPCand providing advice to the
minister and working acrossgovernment with other agencies.
And we have in Australia theAustralian Government Crisis
Management Framework whichbasically sets out which agency
is responsible for managingdifferent types of crisis.
So of course, the Public HealthCrisis Department of Health
(24:07):
becomes the lead agency.
And we had to work very muchhand in glove with Department of
Foreign Affairs because theissue of the aid is their lead
and their responsibility.
So we, between us all, set up aframework where aid was
provided.
But we had an arrangement wherethere were certain checks and
(24:27):
balances of people returning toAustralia where they had to make
declarations at the airportwhere, if they had been in a
high risk area that they maybewere assessed further at the
airport, and because Departmentof Agriculture manages the
biosecurity staff at the airport, they were involved in that.
(24:48):
And then we had a monitoringarrangement which was also set
up with the states andterritories.
So states and territories weresetting up like text messaging
arrangements for monitoringtemperature of people who had
returned and you know, orsymptoms and other things of
people who had returned fromWest Africa for a period of time
to make sure that they didn'tdevelop any symptoms.
(25:09):
So through all of that wesuccessfully had a large number
of people go over and providesupport in Africa and we had no
cases of Ebola in Australianpeople coming home.
So it was successful in thatregard.
Yeah, it was good.
Matt Burgess (25:26):
Oh good, you know very good.
But it's kind of comicalbecause Ebola, you know,
although it's a very seriouscondition, you know Australians
weren't really affected inAustralia and then all of a
sudden, out of the blue, we are.
Well, we were exposed to thepandemic that sort of went
(25:50):
across the globe.
And so do you think that yourtime working with Ebola sort of
helped with the COVID crisis andlike, were you involved with
sort of the emergency responsefrom a COVID point of view?
Julia Mansour (26:04):
Yeah, absolutely helped.
I mean, it helped me on apersonal level because I knew
from very, very early days whatwas happening behind the scenes
and you know why measures werebeing put in place.
But then in July 2020, therewas a need here in Tasmania for
someone to come and help managethe Emergency Operations Centre
(26:24):
Public Health EmergencyOperations Centre for the COVID
response here in Tasmania.
So I actually went and workedin that space and, yeah, so my
experience in the Commonwealthcertainly helped me basically
assimilate into that space andto work in that environment and
to understand the machinationsof the roles and
(26:47):
responsibilities, and inemergency management they talk a
lot about command and control.
To understand all of that youhave to actually have
experienced and lived it andunderstand what the risks are.
If you don't follow through andunderstand each person's
individual role, like you can'tjust be jumping in and helping
(27:07):
out it doesn't work that way.
So, yeah, governance is very,very important and roles and
responsibilities are very, veryimportant for those types of
responses to functioneffectively.
So that really, my previousexperience certainly put me in
good stead for that and myprevious experience also meant
that I got to.
(27:28):
I knew Dr Mark Beach, who's theDirector of Public Health here
in Tasmania.
I knew him from my previousworking with Canterbury, working
with AHPBC, so that just builta natural and immediate kind of
connection and it meant that Ijust could sit in a room with
(27:50):
him, you know, for half an hourevery morning, which is what we
all did.
8.30 every morning we had ourmorning briefing and I just kind
of knew where he was at.
I could assimilate that andunderstand that and take that to
the rest of the team about thisis where we go in and what
we're doing for today and howthings are changing.
But also with you know, we hadan amazing team.
(28:12):
I was definitely the baby ofthat team, like I had an amazing
off-sider, julie Graham.
So we were the J team and weyeah, it was a really good
experience.
Matt Burgess (28:23):
Wow.
Julia Mansour (28:24):
For long, but good yeah.
Matt Burgess (28:27):
So now you're back genetic counseling and I see
that you're working in theprivate sector and you know, a
few years ago I opened a privatepractice and you know, being
such a strong public healthadvocate, I really needed to sit
myself down and sort ofreconcile like public versus
private and sort of.
Where I landed was when Iworked in the public sector.
(28:50):
I saw that we had a finiteamount of resources and we
couldn't help everyone and therewas a group of people that
actually required geneticcounseling or required a service
, but they didn't qualify in thepublic system and so that sort
of made up a, you know, a groupof the people that I saw in my
(29:14):
private practice.
Can you sort of talk to us alittle bit about, you know,
genetic counseling in theprivate sector versus the public
sector and what you sort ofthink about that?
Julia Mansour (29:27):
Yeah, it's really I'm learning a lot through this
experience and it's interestingbecause in coming into it I
didn't think it would be quiteso different, but I really am
learning a huge amount about thedifferences in practice in the
public system versus the privatesystem.
And to start out with, I thinkit's important to be a pretty
(29:51):
skilled clinician, I think, tobe able to work in a private
context, because you're workingvery much on your own and so
that's built a different levelof awareness and, I guess,
vulnerability for me about mypractice.
So I have to be reallyconfident about the decisions
that I'm making and the adviceI'm giving.
(30:12):
I don't have someone rightthere next to me, you know, or
down the hall that I can ask,you know, just before I run into
clinical, just after, to getthe answers and the updates
about did I do this right or amI thinking correctly or am I
missing something here?
In fact, I have to formalizethose types of arrangements and
(30:35):
conversations.
So it's, you know, I havereally strong connections for
supervision, and both peersupervision but also a
structured supervision to someclinical cases.
It's so I've found that in someways, that's much more
important now that I'm workingin private, because I just have
(30:59):
not embedded in a clinicalgenetic sense in the way that I
used to be, so that's been a biggrowth for me on a professional
level.
I think the other thing is whatyou said about choice and it's
really helped me think throughor forced me to think through.
(31:20):
You know what are my, what's myrole here, how do I fit into
the system?
And I think that there needs tobe a continuum between the
public health system and thepublic health space and private
health, and I think the realityis that there are, that, as I
said before, the public healthsystem is quite stressed and in
(31:42):
the area of clinical genetics,you know there are people who
are waiting six months, 12months for an appointment and I
know our laboratories are alsostressed and taking, you know,
some time to like up to threemonths to return results at
times.
So things are slowing down andthat's really hard for people
who are stressed and anxious, sothat one side of it's financial
(32:06):
and another is the plight anddemand and time and resources.
And the public health systemcan't afford to pay for testing
or for appointments for everysingle person and needs to have
a criteria around who they willsay and you know who are at
highest risk, who needs theservice the most, and then the
(32:27):
people who are at lower risk ordon't need the service as much,
unfortunately in a situationwhere they have to wait.
And so I guess offering aprivate service provides people
choice, and I think, when I'vethought more deeply about it, I
think that's what we do asgenetic counsellors.
(32:48):
In many ways, we trade inchoice, we provide people with
choices, we provide peopleoptions.
Whether we do that in ahospital clinic or a public
health setting or in a privatesetting, our trade is the same
effectively, but I guess, asoffering genetic counselling as
(33:10):
a private practitioner givesjust another element of choice
is the way I see it.
And so it's like, if you wantto, there's an option here.
But you know, I do see it as anextension of existing services.
Matt Burgess (33:28):
Really, yeah, okay .
So it's sort of like anotherway that we can be client
focused, and that's a big partof our role.
Julia Mansour (33:37):
Yeah, absolutely yeah.
Matt Burgess (33:39):
You for well, that might be a good place to finish
up.
Thank you very much for yourtime today.
Yeah, it's been great chattingwith you.
Julia Mansour (33:50):
Thank you so much .
It's been really good.
We've covered lots of things,didn't we?
You taught me to face, as I hadbeen for a long time.
Matt Burgess (33:58):
Well, I enjoyed going there with you and I think
you answered the very well.
I look forward to catching upwith you, hopefully soon, in
person.
Julia Mansour (34:09):
Yeah, cool.
Are you coming for theinternational congress?
Matt Burgess (34:13):
I won't be home for that, but I do think I will
be in Melbourne for theAustrelation Society of Genetic
Counselors meeting in November.
Julia Mansour (34:23):
November.
Okay, hopefully I'll see youthen.
That'll be great.
Matt Burgess (34:27):
Excellent.
Well, have a good rest of yourday and I'll talk to you later.
Julia Mansour (34:31):
Thank you so much .
I'll go see you, Matt.
Matt Burgess (34:34):
Bye.
I'd like to say a big thank youto Julia for being my guest
today.
Also, thank you to the episodesponsor Track, jean, and to my
wonderful producer, omi, atRossinger Studios.
Hello and welcome to Demystify and Genetics.
I'm your host, matt Burgess,and on today's show I have with
me Julia Mansour, geneticcounselor.
We talk about policy, we talkabout the law, we go into issues
regarding public health andpublic versus private health and
(00:21):
how all of that relates togenetic counseling.
So enjoy, okay, hello, julia,How's it going?
Welcome to Demystify andGenetics.
Julia Mansour (00:34):
Thank you.
Thank you for having me.
I'm feeling very unqualified tobe here, but I'm honored and
excited to talk to you.
Matt Burgess (00:42):
I look you in very safe hands, so I see pics of
you on socials.
It looks like you're having agreat time in Tasmania.
Is that where you are now?
Julia Mansour (00:56):
Yes, I'm sitting here in Hobart, nipaluna,
tasmania, and it's the earlymorning and as we talk this
morning, I'm going to bewatching the sunrise through my
window, which is one of myfavorite things of the day to
watch the sunrise and it'sgorgeous from here.
So, yeah, I am very spoiled.
I live in a very beautifulplace.
Matt Burgess (01:18):
Beautiful.
You're an early bird like me,by the sounds of it.
Julia Mansour (01:21):
Yes, I am.
Matt Burgess (01:23):
And how is life going in Tassie?
Julia Mansour (01:26):
Yeah, life's great in Tassie.
Yeah, I swim many mornings aweek like three to four mornings
a week and yeah, I've got avery strong affinity with the
ocean and the water.
So it's a perfect place for meto be on a small island where
there's water all around.
So, yeah, it's my thing.
(01:46):
I have to get in the wateralmost every day and even if I
don't swim properly, I just getin.
Matt Burgess (01:52):
Good for you, it's awesome, and there's some good
wine in Tasmania as well, sothat helps.
Julia Mansour (01:59):
There is definitely good wine.
I'm trying to give myself alittle rest from the wine at the
moment after lots ofoverindulgence.
We had my festival here for thewinter solstice just the last
couple of weeks and so, yeah,there was a bit of happiness and
craziness and partying going onover that time.
(02:19):
That's what it's all about, so,yeah.
Matt Burgess (02:22):
Oh, sounds good.
Now, first things first.
I would actually like to saythank you.
When I was thinking about ustalking together, I sort of was
reminded about when I firstgraduated and when I got my
first job as a genetic counselorall those years ago, and you
were one of the geneticcounselors that I sort of hung
(02:44):
around with and it wasn't thatmuch, I don't think, but in
hindsight I think that it wasactually very helpful.
Like, I think I wasoverconfident, I thought I knew
it all, I was ready to go, andwhen I spent time with you, I
just think you sort of groundedme a little bit and I think that
I was better off for that.
(03:06):
So have you been a mentorbefore, or have you had any
mentor training, or is thatsomething that you've sort of
been involved with in the past?
Julia Mansour (03:16):
Haven't officially been a mentor before.
I just want to say thank you inresponse to that.
When I think back, I thinkabout early days and I was
thinking about the fact thatI've known you for quite a long
time and from when we were bothsort of baby GCs although I
think I was only a couple ofyears ahead of you in terms of
(03:37):
my training and when I first wasqualified.
But I've always loved havingthat connection with you and
meeting up with you atconferences and seeing you
around, and I remember when youwere living not far away and we
could catch up, even socially attimes.
So, yeah, it's been good, andthat's what I love about where
(04:00):
I'm at in the profession at themoment is that I've got these
long standing professionalcollegiate relationships and it
means a lot because I think as aprofessional, we've grown
through a lot and so asindividuals we've grown through
a lot in that way as well.
So, yeah, I haven't officiallydone a lot of mentoring I've
(04:21):
actually but I love sharing myknowledge and my experience with
people.
I think in some ways it's kindof all storytelling and it's
what our clients and patients dowith us as well, and so I sort
of love sharing and so I'm happyto do that.
I'm always generous in that wayand I've benefited from some
(04:42):
amazing mentors.
I reckon there's people likeJack Goldblatt in Western
Australia who was the clinicalgenesis and director of that
service.
He's been a lifelong mentor forme, like he, I reckon, has been
a referee for almost every jobI've been for.
You know someone I keep intouch with and you know we stay
(05:02):
connected about what's happeningin our lives in general.
You know and you know peoplelike Joe Burke here in Tasmania,
who really gave me a shot whenI was coming back into the
profession after a break andwho's really supported me.
You know in many ways so, but Ithink a lot of it goes both
(05:23):
ways, as you kind of havehighlighted.
Yeah, yeah, that's great.
Matt Burgess (05:28):
Oh good, I think I really like when we sort of
catch up at conferences and, youknow, when everybody walks into
the room and we see each otherfor the first time, especially
in Australia where there's only,you know, such a limited number
of genetic counselors that wekind of squeal because we get so
excited.
So yeah, I really like that.
Oh, so I saw that a few yearsago you published a paper you
(05:53):
were one of the authors on apaper called Human Genetic
Society of Australasia PositionStatement Predictive Testing and
Symptomatic Genetic Testing inAdults and Children.
Now this is a huge topic and Iguess sort of the takeaway in
the article was unless there's adirect medical benefit, the
(06:16):
advice is not to offer testingto children for genetic
conditions that affect adults.
And you know, as I get older andthe more experience I get, I
know when I first started as agenetic counselor I thought,
okay, that's the rule.
It's black and white.
The answers.
No, we're not going to dotesting, that's it.
(06:38):
And I guess I just think it'sfunny that my opinion has
changed a little bit and I thinkthat it's not always black and
white.
And were you able to kind ofget some of that nuance into
this paper, do you think?
Julia Mansour (06:55):
I think we did try to do that.
I mean, I think, just to give abit of context to where that
paper came from.
I sit on the Education, ethicsand Social Issues Committee of
the Human Genetic Society ofAustralasia and I was the
co-chair of that committee for acouple of years, which is a
huge honour and has been anamazing group of people to work
(07:17):
with.
I love the work that we do.
We get to be on the well.
We actually have licence.
I get to be watching foremerging issues that we feel
that our profession and societyneeds to be aware of and issues
that we think we wonder whetherthere should be a position
(07:39):
statement around or a policy orposition around.
This article actually came froma review of a previous position
statement and I think, as yousay, it does try to create a
space where and we go to some ofthat in the article creating an
understanding about how do youassess someone's competence or
(08:02):
decision-making capacity if theydon't meet the adult kind of
position.
So we talk about people who aremaybe under 18 or minors and how
you would assess whether theyare really understanding what
they are getting into, and thereis a legal framework for that,
(08:23):
that's in common law around howyou make some of those
assessments.
So we try to build that in sothat it's not a blanket yes or
no.
And I've certainly clinicallybeen in situations where you've
got quite an astute young personin front of you who knows that
they want this test and for youto refuse it is one
(08:46):
paternalistic, but twopotentially damaging to that
person who, if they don't getthe information that they feel
that they need, there could bepotential psychological distress
to them, like they are in aposition where to know is better
than not to know, and so who amI to stand in the way of that?
But my job is to check out howare they going to manage this
(09:07):
information and do they have thematurity and competence to
incorporate that and manage that?
And I you know it all comesdown to duty of care.
So that's what we try to buildinto that statement.
Matt Burgess (09:21):
Yeah, that is complex and I think you
highlighted a lot of the issuesthere, because we need to be
advocates for our clients and wewant the best for them and
there is a duty of care in ourjobs in looking after our
clients.
But then we need to balancethat with that paternalism and I
(09:42):
guess it's hard for us to sayyes, you can, or no, you can't,
and maybe we're not the bestpeople to be making that
decision for people.
But yeah, I see that it is acomplicated, complex issue and
I'm glad that you mentioned thelegal issue there, because
you're a genetic counselor whohas actually studied law.
(10:06):
So in your background youstarted as a lab scientist and
then you became a geneticcounselor.
But what took you into studyinglaw?
Julia Mansour (10:17):
I think probably as we, most of us would have
done in our training and I'vegot to say I changed back in the
late 1990s, so it was prettyearly days in terms of genetic
counseling in Australia.
We were, we were alerted to thepotential of genetic
discrimination as a result of,you know, in terms of things
(10:38):
like insurance and jobs andthings like that, and I think it
was you know, the Gatiga moviecame out around that time, maybe
a scene after, and so it wassort of something that I thought
a lot about and that I wasconcerned about and wanted to
have a better understandingabout.
So I started law sort of morewith the view of getting a
(11:02):
better understanding about legalframeworks and wanting to
understand what the law was andhow it could possibly help
people if we were in a situationwhere, you know, this issue of
genetic discrimination reallytook off and became a really big
thing.
And so what was interestingwhen I studied law was I
(11:22):
actually was really interestedin tort law, which is the law of
wrongs, where you have thingslike issues of negligence and
say things like medicalnegligence comes up in that
space and issues around privacylaw come up in tort law.
So it became kind of it.
Through the study my interestbroadened and, I guess, became a
(11:46):
little more philosophical andtheoretical than practical, even
though I did go on and do mytraining to be admitted to the
court.
So if I decided to go back andget myself a baby lawyer job and
practice I could do that.
It's very exciting andsomething I think about doing at
(12:07):
times, but it might be like aretirement job.
Matt Burgess (12:11):
Okay, because I was going to ask you about that.
So in the Australian legalcontext you can do a law degree
but then to actually practiceyou need to go on and do the
graduate diploma of law or legalstudies.
And is that?
Sort of similar to like sittingthe bar exam or like.
Julia Mansour (12:34):
Effectively, yes, so it's what gets you on the
register as a lawyer in a courtor in a Supreme Court.
So my arm on the Supreme Courtof ACT.
But it becomes sort of mutuallyrecognised through the other
states and territories.
But then to actually practiceyou need a practicing
certificate and to get apracticing certificate you need
to work in a legal firm undersomeone with a practicing
(12:56):
certificate.
So you need to do a couple ofyears training in that context
before you can get a practicingcertificate.
So to practice on your own,there's still another couple of
steps.
But you won't get there ifyou're not admitted to the court
.
Matt Burgess (13:11):
Okay, and so was there a time where you thought
that maybe you would go intofull time law, or did you always
think, oh no, health is sort ofwhere you wanted to stay?
Julia Mansour (13:23):
Yeah, actually.
So through my graduate diplomaof legal practice I actually
worked in.
I did some of my training inlegal aid, which I loved.
So I think I've always I'malways going to work in a role
that has some sort of communityfocus to some extent or helping
people on that level.
Yeah, I loved the work in legalaid and it was really similar
(13:47):
to counselling in many wayslistening to people and
listening to their issues andhelping them navigate away
forward and giving them optionsabout which way they could go.
You know, that's what it'sabout.
So I, when I was making thedecision to come back to genetic
counselling or I've beenworking in the Commonwealth
(14:07):
government in sort of big policyprogramme space and wanting to
get back into sort of you know,working more with people on an
individual level I was equallyapplying for genetic counselling
jobs as legal jobs.
So I was kind of thinking Ijust jumped whichever way came
up first.
So, yeah, I'm pretty happy withwhere I landed.
I'm very happy with where Ilanded.
(14:28):
But yeah, I did go through aphase at that point where I
thought maybe this is the time.
Matt Burgess (14:33):
Okay, and was that sort of like a fatalistic thing
, like did you put your, yourfate in the hands of Mother
Nature, or like you were justhoping the universe would guide
you, or yeah, thank you, Lee.
Julia Mansour (14:46):
Like I kind of was just applying for things you
know all different types ofthings and I was going to go
with, yeah, the thing that madethe most sense, and that's
something I've done since I mademy baby.
So I made decisions based onwhat feels right and it works
for me.
Matt Burgess (15:05):
Yeah, oh, that's beautiful, oh good and it's
great, because I can see a bigsmile on your face while you say
that.
Do you run a small privategenetic practice?
Do you need to draw pedigreesand save them from your patients
and store their data?
Well, trackgene may be able tohelp you with this.
Trackgene is used by hospitals,genetics clinics and private
(15:28):
practices all over the world.
They have genetic counselors onstaff, so the program and how
it functions has clinician inputat every step.
For more information or to booka demonstration, go to
trackgenecom.
(15:50):
Now, sort of looking throughyour CV, it's obvious that
you're a passionate publichealth advocate and I guess you
know there's people from allover the world that listen to
this podcast.
So maybe I'll sort of brieflydescribe public health or how it
works in Australia.
But we have a universal healthcare system in Australia and
(16:11):
basically what that means is,when we work and we pay taxes, a
proportion of that tax or thatmoney goes to the public health
system and if you are Australianor you're a permanent resident
and you qualify for a Medicarecard, you have access to public
health.
Now, it's not a perfect system,but I think it works pretty
(16:36):
well.
Do you think that that is afair sort of characterization of
public health in Australia.
Julia Mansour (16:44):
Yeah, the public health system and access to
health services.
It is universal and while thesystem is very stressed at the
moment, it's extremely stressed.
There is access for everybodyand that's really important, and
it's regardless of whether youcan afford pay or not.
There is access.
Matt Burgess (17:06):
Yeah, and I guess sort of one of the interesting
factors that maybe peopleoutside the system don't quite
realise or understand is thatthe private health system works
quite closely with the publichealth system and if you pay
into the private health systemthat sort of can take some of
(17:26):
that pressure off and they sortof work in tandem so the people
that can afford it can sort ofhelp prop up the system for the
people that maybe can't affordit.
Julia Mansour (17:38):
Yes, that's right .
That's how it works.
Matt Burgess (17:41):
So like one of your jobs was prevention of
petrol sniffing and that seemslike such a difficult sort of
controversial, highly chargedkind of area, Can you tell us a
(18:02):
little bit about your experiencein that?
Julia Mansour (18:05):
Yeah, so that was a really amazing experience
that I had working in theCommonwealth Government
Department of Health.
So that's effectively probablythe equivalent in other
countries is like the Ministryof Health.
So that particular programmewas an Indigenous Health
(18:26):
programme.
So it was a programme that wasfocused on reducing harm to
young Indigenous people, becausewe knew there was evidence that
there were young Indigenouspeople out in remote parts of
Australia mostly who were usingpetrol as a substance to get
(18:49):
high.
So petrol sniffing to get high.
But the concern was that thetype of fuel that they were
sniffing, which was often almostlike an aviation fuel, actually
was significantly damagingtheir brain.
So it wasn't just an interimyou know, let's get high and
have a bit of fun and no majordamage.
(19:11):
It was causing significant andpermanent damage.
So there was an initiativestarted, I think early 2000s,
and the federal governmentfunded it which was actually to
replace lettuce fuel in all ofthese remote areas with what we
call low aromatic fuel, and somy job in the Commonwealth
(19:34):
Department was to manage a teamof people and to work with a
number of different stakeholders, including Aboriginal
communities on the ground,service station owners, to
actually change their supply offuel from lettuce fuel or an
(19:55):
even normal unleaded fuel, tolow aromatic fuel so that if the
sniffing were to occur then itwouldn't be harmful because
there was the, it was the well,and it actually wouldn't be
attractive because the lowaromatic fuel was not desirable
for sniffing.
So it was a health preventionmeasure and it was really highly
(20:19):
successful.
We reduced over time, reducedthe rate of sniffing
significantly and that was byreplacing the fuel in pretty
much you know, all of theservice stations where there
were issues and you know througha broad chain of outback kind
of travel in Australia and itwas amazing.
We did lots of likecommunication campaigns.
(20:41):
We got to work with people onthe ground.
I did some amazing work in termsof legal negotiations with big
major fuel companies like Shelland BP, which is really out
there.
So, yeah, it was took me into awhole heap of different areas
of work.
I ended up sitting inParliament while we passed a
bill called the Low AromaticFuel Bill to bring in a law to
(21:06):
actually, you know, ban aromaticfuel in certain areas.
It was, yeah, pretty cool.
It was an amazing experience.
Matt Burgess (21:13):
That's fantastic, julia kicking goals.
So I'm guessing that youroffice was in Canberra, but did
you get to travel to outbackAustralia in that role?
Julia Mansour (21:24):
Yeah, so I got to go to our springs and Cunapedi
and I got to travel to I'mpretty sure I went to Darwin
with that job.
I didn't get as much outback onthe ground as I would have
liked to really remote areas,but I did get to go to a few
different conferences and thingsto talk about what we were
(21:47):
doing and to promote the programand the objectives.
Yeah, it was awesome.
Matt Burgess (21:54):
Wow, and then it looks like you moved on to the
public health emergency responseto Ebola.
Was there like a big sort ofneed for that in Australia, or
was it sort of interactions withAfrica where, like, ebola was
more common, or what sort of?
How did that job work?
Julia Mansour (22:16):
Yeah, it was a huge Australian government
interagency effort and it wasvery much about the need to
support the humanitarian crisisin West Africa.
With that, it was occurring asa result of the Ebola outbreak
and I was working in the healthtask force the Ministry of
(22:38):
Health Task Force but we workedvery, very closely with
Department for Foreign Affairsand Trade and also Department of
Agriculture and it was reallyabout there were significant
calls for Australians to supportthe effort on the ground in
West Africa, but there wereconcerns about the risk to
Australia that if we had healthworkers going over there, then
what was the risk of them comingback and bringing Ebola back to
(23:02):
Australia and how did we managethat?
How would we measure them?
Plays that allow Australia tofulfill its objectives in
providing that support and aidon a humanitarian basis but
protecting our people andprotecting the rest of the
population here.
And so my job there in thehealth task force was actually
(23:23):
to provide some support andadvice from public health
framework and I worked veryclosely with you know
organisations that people wouldknow a lot more about now, which
is the Australian HealthProtection Principal Committee,
hppc, who were making a lot ofthe decisions through the COVID
experience.
So that's how I, you know, gotto meet a lot of those people
(23:45):
and that taking advice from HPPCand providing advice to the
minister and working acrossgovernment with other agencies.
And we have in Australia theAustralian Government Crisis
Management Framework whichbasically sets out which agency
is responsible for managingdifferent types of crisis.
So of course, the Public HealthCrisis Department of Health
(24:07):
becomes the lead agency.
And we had to work very muchhand in glove with Department of
Foreign Affairs because theissue of the aid is their lead
and their responsibility.
So we, between us all, set up aframework where aid was
provided.
But we had an arrangement wherethere were certain checks and
(24:27):
balances of people returning toAustralia where they had to make
declarations at the airportwhere, if they had been in a
high risk area that they maybewere assessed further at the
airport, and because Departmentof Agriculture manages the
biosecurity staff at the airport, they were involved in that.
(24:48):
And then we had a monitoringarrangement which was also set
up with the states andterritories.
So states and territories weresetting up like text messaging
arrangements for monitoringtemperature of people who had
returned and you know, orsymptoms and other things of
people who had returned fromWest Africa for a period of time
to make sure that they didn'tdevelop any symptoms.
(25:09):
So through all of that wesuccessfully had a large number
of people go over and providesupport in Africa and we had no
cases of Ebola in Australianpeople coming home.
So it was successful in thatregard.
Yeah, it was good.
Matt Burgess (25:26):
Oh good, you know very good.
But it's kind of comicalbecause Ebola, you know,
although it's a very seriouscondition, you know Australians
weren't really affected inAustralia and then all of a
sudden, out of the blue, we are.
Well, we were exposed to thepandemic that sort of went
(25:50):
across the globe.
And so do you think that yourtime working with Ebola sort of
helped with the COVID crisis andlike, were you involved with
sort of the emergency responsefrom a COVID point of view?
Julia Mansour (26:04):
Yeah, absolutely helped.
I mean, it helped me on apersonal level because I knew
from very, very early days whatwas happening behind the scenes
and you know why measures werebeing put in place.
But then in July 2020, therewas a need here in Tasmania for
someone to come and help managethe Emergency Operations Centre
(26:24):
Public Health EmergencyOperations Centre for the COVID
response here in Tasmania.
So I actually went and workedin that space and, yeah, so my
experience in the Commonwealthcertainly helped me basically
assimilate into that space andto work in that environment and
to understand the machinationsof the roles and
(26:47):
responsibilities, and inemergency management they talk a
lot about command and control.
To understand all of that youhave to actually have
experienced and lived it andunderstand what the risks are.
If you don't follow through andunderstand each person's
individual role, like you can'tjust be jumping in and helping
(27:07):
out it doesn't work that way.
So, yeah, governance is very,very important and roles and
responsibilities are very, veryimportant for those types of
responses to functioneffectively.
So that really, my previousexperience certainly put me in
good stead for that and myprevious experience also meant
that I got to.
(27:28):
I knew Dr Mark Beach, who's theDirector of Public Health here
in Tasmania.
I knew him from my previousworking with Canterbury, working
with AHPBC, so that just builta natural and immediate kind of
connection and it meant that Ijust could sit in a room with
(27:50):
him, you know, for half an hourevery morning, which is what we
all did.
8.30 every morning we had ourmorning briefing and I just kind
of knew where he was at.
I could assimilate that andunderstand that and take that to
the rest of the team about thisis where we go in and what
we're doing for today and howthings are changing.
But also with you know, we hadan amazing team.
(28:12):
I was definitely the baby ofthat team, like I had an amazing
off-sider, julie Graham.
So we were the J team and weyeah, it was a really good
experience.
Matt Burgess (28:23):
Wow.
Julia Mansour (28:24):
For long, but good yeah.
Matt Burgess (28:27):
So now you're back genetic counseling and I see
that you're working in theprivate sector and you know, a
few years ago I opened a privatepractice and you know, being
such a strong public healthadvocate, I really needed to sit
myself down and sort ofreconcile like public versus
private and sort of.
Where I landed was when Iworked in the public sector.
(28:50):
I saw that we had a finiteamount of resources and we
couldn't help everyone and therewas a group of people that
actually required geneticcounseling or required a service
, but they didn't qualify in thepublic system and so that sort
of made up a, you know, a groupof the people that I saw in my
(29:14):
private practice.
Can you sort of talk to us alittle bit about, you know,
genetic counseling in theprivate sector versus the public
sector and what you sort ofthink about that?
Julia Mansour (29:27):
Yeah, it's really I'm learning a lot through this
experience and it's interestingbecause in coming into it I
didn't think it would be quiteso different, but I really am
learning a huge amount about thedifferences in practice in the
public system versus the privatesystem.
And to start out with, I thinkit's important to be a pretty
(29:51):
skilled clinician, I think, tobe able to work in a private
context, because you're workingvery much on your own and so
that's built a different levelof awareness and, I guess,
vulnerability for me about mypractice.
So I have to be reallyconfident about the decisions
that I'm making and the adviceI'm giving.
(30:12):
I don't have someone rightthere next to me, you know, or
down the hall that I can ask,you know, just before I run into
clinical, just after, to getthe answers and the updates
about did I do this right or amI thinking correctly or am I
missing something here?
In fact, I have to formalizethose types of arrangements and
(30:35):
conversations.
So it's, you know, I havereally strong connections for
supervision, and both peersupervision but also a
structured supervision to someclinical cases.
It's so I've found that in someways, that's much more
important now that I'm workingin private, because I just have
(30:59):
not embedded in a clinicalgenetic sense in the way that I
used to be, so that's been a biggrowth for me on a professional
level.
I think the other thing is whatyou said about choice and it's
really helped me think throughor forced me to think through.
(31:20):
You know what are my, what's myrole here, how do I fit into
the system?
And I think that there needs tobe a continuum between the
public health system and thepublic health space and private
health, and I think the realityis that there are, that, as I
said before, the public healthsystem is quite stressed and in
(31:42):
the area of clinical genetics,you know there are people who
are waiting six months, 12months for an appointment and I
know our laboratories are alsostressed and taking, you know,
some time to like up to threemonths to return results at
times.
So things are slowing down andthat's really hard for people
who are stressed and anxious, sothat one side of it's financial
(32:06):
and another is the plight anddemand and time and resources.
And the public health systemcan't afford to pay for testing
or for appointments for everysingle person and needs to have
a criteria around who they willsay and you know who are at
highest risk, who needs theservice the most, and then the
(32:27):
people who are at lower risk ordon't need the service as much,
unfortunately in a situationwhere they have to wait.
And so I guess offering aprivate service provides people
choice, and I think, when I'vethought more deeply about it, I
think that's what we do asgenetic counsellors.
(32:48):
In many ways, we trade inchoice, we provide people with
choices, we provide peopleoptions.
Whether we do that in ahospital clinic or a public
health setting or in a privatesetting, our trade is the same
effectively, but I guess, asoffering genetic counselling as
(33:10):
a private practitioner givesjust another element of choice
is the way I see it.
And so it's like, if you wantto, there's an option here.
But you know, I do see it as anextension of existing services.
Matt Burgess (33:28):
Really, yeah, okay .
So it's sort of like anotherway that we can be client
focused, and that's a big partof our role.
Julia Mansour (33:37):
Yeah, absolutely yeah.
Matt Burgess (33:39):
You for well, that might be a good place to finish
up.
Thank you very much for yourtime today.
Yeah, it's been great chattingwith you.
Julia Mansour (33:50):
Thank you so much .
It's been really good.
We've covered lots of things,didn't we?
You taught me to face, as I hadbeen for a long time.
Matt Burgess (33:58):
Well, I enjoyed going there with you and I think
you answered the very well.
I look forward to catching upwith you, hopefully soon, in
person.
Julia Mansour (34:09):
Yeah, cool.
Are you coming for theinternational congress?
Matt Burgess (34:13):
I won't be home for that, but I do think I will
be in Melbourne for theAustrelation Society of Genetic
Counselors meeting in November.
Julia Mansour (34:23):
November.
Okay, hopefully I'll see youthen.
That'll be great.
Matt Burgess (34:27):
Excellent.
Well, have a good rest of yourday and I'll talk to you later.
Julia Mansour (34:31):
Thank you so much .
I'll go see you, Matt.
Matt Burgess (34:34):
Bye.
I'd like to say a big thank youto Julia for being my guest
today.
Also, thank you to the episodesponsor Track, jean, and to my
wonderful producer, omi, atRossinger Studios.
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