July 6, 2023 • 37 mins
Explore the captivating world of genetic counseling with Laura Forrest, a respected academic and associate genetic counsellor all the way from Melbourne, Australia. Together, we untangle the intricacies of qualitative research in clinical genetics and the fascinating journey through her PhD in familial communications. We also delve deep into her publications and discuss the promising Genetic Counseling Outcome Scale. Along the way, enjoy lighter moments as Laura shares the story of her new puppy Alfie and his toilet training tale. Furthermore, we underscore the transformative power of feedback on refining our work. In the second half, we navigate the significance of mixed-methods research in shaping a robust academic and research career. Through an enriching conversation, we provide insight into the multi-method studies, their applications, and the merits of qualitative and quantitative methods. Laura also opens up about her experiences of co-authoring papers with her husband. Shifting gears, we discuss the Genetic Counseling Outcome Scale (G-COS), an innovative tool designed to measure the empowerment outcomes of genetic counseling. Discover the five constructs of the G-COS and learn how it can amplify the effectiveness of research and practice. Tune in to this enlightening episode and stay informed! Genetic Counseling Outcome Scale https://pubmed.ncbi.nlm.nih.gov/21255005/ https://www.petermac.org/staff-details/laura-forrest https://findanexpert.unimelb.edu.au/profile/135809-laura-forrest
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Matt Burgess (00:00):
Hello and welcome to a new season of the
Mystifying Genetics.
I'm your host, matt Burgess.
I'm a genetic counsellor livingand working in the United
States.
However, i am from Australiawhere I trained.
This is season three of thystifying Genetics and I just
wanted to say a big thank you toall of the listeners so far.
(00:22):
I have really enjoyed receivingyour feedback and your comments
and I hope that you enjoy thisnew season, and I'd like to say
a big thank you to our sponsorsfor this episode, track Gene.
I'd like to thank my producer,omi.
(00:43):
I think he does a fabulous jobat making this podcast sound as
good as it does, so thank youvery much.
So in this episode of theMystifying Genetics with Laura
Forrest, i speak to Laura, whois an academic and an associate
genetic counsellor living inMelbourne, australia.
(01:04):
We talk about her academicinterests and her PhD, which was
in familial communications.
We also speak about some of herpublications, the genetic
counselling outcome scale, andreally dig deep, or a little bit
deeper, into qualitativeresearch in clinical genetics.
(01:27):
Dr Laura Forrest, welcome tothe podcast.
Dr Laura Forrest (01:32):
Thank you very much, matthew Burgess.
Matt Burgess (01:34):
It's very exciting to have you.
This is episode one of seasonthree, so yeah, very excited.
Dr Laura Forrest (01:42):
Thank you, i'm absolutely delighted to be
talking to you this morning.
Matt Burgess (01:46):
So first things first.
you have a new dog, So tell usall about your puppy.
Dr Laura Forrest (01:54):
We do have a new dog.
His name is Alfie and he is ablack Labrador and he's
currently about 13 and a halfweeks old, so he's still very
little.
He's very swish and the kidsabsolutely adore him, so he's
fitting right into my family.
But I am going to have to havethe rug near the front door deep
(02:14):
cleaned because he seems tohave taken a liking to using the
rug as a toilet spot.
But we are on it in terms ofgetting him outside, so he is
almost toilet trained.
Matt Burgess (02:26):
Oh well, it sounds like he's sort of going in the
right direction, so that's good.
Dr Laura Forrest (02:30):
He's trying to get there, yeah.
Matt Burgess (02:32):
Oh well, i hope that my beautiful doggy Banjo
will get to play with Alfie inthe next few months.
Dr Laura Forrest (02:38):
Yeah, that would be really exciting.
Matt Burgess (02:41):
Yeah, now as you know, i'm doing a little bit of
study at the moment and I juststarted at my thesis and before
I started I met with mysupervisor and she is actually a
therapist herself and she sortof went to great lengths to talk
about how, you know, givingfeedback and it's not personal
(03:02):
and you know she's trying tomake, like my work better and
you know, don't think of it ascriticism and I thought yeah
yeah, that all sounds fine.
And then the first time I gotwork back I was like who is this
woman Like?
I was like really cranky andwas like, ah, so you have a PhD
in genetic counseling.
Is that how you felt when youreceived feedback from your
(03:26):
supervisors?
Dr Laura Forrest (03:29):
Absolutely.
I had four supervisors for myPhD and each of them was a
really multi-disciplinary teamAnd so each of them brought
something different to thesupervision and therefore gave
me different styles of feedbackwhen they looked at my work And
I took different things fromeach of their feedback.
But there's always that initialkind of when you, you know, say
(03:54):
it's an electronic document,you open it up and you see all
of the track changes or thecomments and having to kind of
take a beat, take a moment andseparate yourself from what
they've given you.
And I think what I learned fromthat experience and also over
the years because obviouslysince then I've written lots of
(04:15):
different papers and you getpeer reviewed for your
publications is that it's oftennot personal and the feedback
that people have given you isonly going to make your work
better.
And the other thing that Ialways try and keep in mind and
it's almost about maintainingthat positive regard for your
supervisors in your mind and notlike and not just thinking oh
(04:36):
my God, who are you Is thatthey've given is the more
feedback they've given you.
It means the more time they'vetaken with your work, so if
they've absolutely gone to townon a piece of work of yours.
It actually means they've spenta lot of their own time and
effort And it means they'rereally invested in you.
What I find disappointing iswhen people read my work now and
(04:58):
get back to me with reallysuperficial, like maybe
grammatical changes or very few,because it means you know
they've kind of just skim, readit and gone.
Yeah, yeah, this is fine.
Yeah, you don't get thatopportunity for improvement and
for learning through thatprocess.
Matt Burgess (05:11):
Oh, it sounds like you've come full circle.
Dr Laura Forrest (05:15):
Probably it's been many years now.
Matt Burgess (05:19):
So now you supervise PhD students, do you
feel like you're able to be thatempathic kind of supervisor and
give good feedback in a lovingway, and do they look at you
with this sort of positiveregard?
Dr Laura Forrest (05:36):
I hope so.
I hope so.
I suppose what's in my mindright now is that I have
different relationships witheach of my PhD students.
It depends who they are andwhere they're at in their lives
and what they bring to their PhD, and so some of them they all
need different things from me asa supervisor, and the same goes
when I'm looking at their work.
(05:56):
They you know, some of themneed more help with general
structure, whereas others mightyou might need a more critical
lens in terms of what exactlythey're writing about.
I've been very lucky, i have tosay.
The students that I'vesupervised so far to date
produced very high quality work,and so you're often providing
feedback more about have youthought about it from this
(06:18):
perspective rather than, youknow, having to correct grammar
or spelling or things like that.
But my comments are probablyand I think this is something
that we all do when we write,whether you write an email or
whether you're writing onwriting feedback for someone's
work There's two things thatimpact how you write for someone
or a comment directed tosomeone.
It depends on your relationshipwith them, but it also depends
(06:40):
on your own frame of mind, likeif I'm, if I'm commenting on a
student's work later at night,my comments might be shorter and
sharper because I'm tired,whereas if I'm doing it fresh,
i've probably got more reserve,more more kind of emotional
empathy to to, to make sure,when I word things to them, that
I can do it in a kinder,gentler way.
I often post comments asquestions do you think that?
(07:03):
or how about considering thisrather than do it this way?
Because you want that kind ofdialogue?
Yeah, and sometimes I'd likeyou know, if I've got a really
well established relationshipwith a student, i'll often write
, like you know, i'll be a bitmore kind of jokey, you know,
well, that was a bit shit.
Like, let's try and let's tryand make that Like.
(07:24):
I know you, i know you can dobetter than this.
Matt Burgess (07:27):
Okay.
So you sort of had theopportunity to build that
rapport and you've got thatrelationship there.
Dr Laura Forrest (07:33):
Yeah, but when you first start out, absolutely
And like if I was commenting on, like if I'm involved in a
manuscript with co-authors who Idon't know very well, i would
keep my tone very polite and tryand provide good quality,
rigorous feedback.
That's not but it's factual Andyeah, and to try and make sure
there's that separation betweenit's clear, i'm not talking
(07:54):
about the person, i'm talkingabout the piece of work.
Matt Burgess (07:57):
Excellent.
Okay, so your PhD is in geneticcounseling and I think it's
about familial communication.
Is that what it was in?
Dr Laura Forrest (08:09):
Yes, yeah, so I did my PhD way back when I
started in 2005 and I had mythesis in 2009 and I was based
at the Murdoch Children'sResearch Institute, enrolled
through the University ofMelbourne, and my supervision
team wanted to do a study infamily communication to look at
(08:32):
how or whether at-risk relativeswere informed that there was a
genetic condition in the family,because I was sitting down at
the Murdoch Children's the typesof genetic conditions that I
included.
The families had differenttypes of genetic conditions,
most of which were pediatric.
I did a mixed methods studyover the course of three and a
(08:54):
bit years and that included aseries of interviews with
parents who had children withdifferent genetic conditions.
I looked at how genetic healthprofessionals practice in terms
of what happens in a consult.
Do they, how, do they supportand encourage families to
communicate?
That survey was pretty novel atthe time because it was online
(09:14):
and back in the mid-2000s wedidn't do a lot of that.
But it was important for thesurvey to be online because I
sent it out internationally andI got a pretty good
representation internationallyfrom different genetic health
professionals and it was reallyinteresting to see the practice.
But the way we structured thesurvey was to compare four
different conditions to look atwhether their practice is
(09:35):
different depending on the modeof inheritance or the severity
of the condition, and then wealso looked at international
guidelines and position papersto see what our professional
societies recommend us to do Andall of these pieces of work.
I'm pretty sure there was someother component, but it was a
while ago.
I published all of thesedifferent sub-studies that
formed the whole within mythesis.
(09:58):
Yeah, so it's been quite sometime.
Family communication is kind ofone of those topics that I feel
very comfortable within becausemy PhD was in that topic, but I
have to admit I haven't done alot of research since then in
that area.
I have just become involved asa collaborator for an
(10:18):
international study that'sactually running from the
University of South Florida andMarlia Dean Krusell is leading
that study with a PhD student,and they're also doing an
international online surveystudy asking people with
hereditary conditions to fillout a survey about what their
motivations are to communicate,and that looks like it's going
(10:40):
to be really interesting.
So we're just trying to getthat off the ground right now at
the Peter McCallum so that wecan recruit our patient cohort
for them.
Matt Burgess (10:48):
Wow, well, that sounds cool.
And what do you think of doinga mixed method study?
Like I think I just assumedthat your PhD was qualitative,
but do you think that it's sortof the best of both worlds, or
like, is it easier to sort ofjust do one or the other?
no-transcript.
Dr Laura Forrest (11:09):
I think as a PhD student, you have an amazing
opportunity to train for afuture academic career and to
train as a researcher Sorryabout the noise outside the room
And so I think the moredifferent types of research that
you can do within your PhD, thebetter equipped you are for
your future research career, ifthat's what you choose to do.
(11:30):
So I think mixed methods ormulti-method studies are a
really great idea, because itgives you the opportunity to
learn all of those differentskills.
So an example for actually allof my students one of the ones
that is currently the mostcontact with at the moment has
just completed a qualitativecomponent doing interviews with
(11:52):
health professionals.
She's about to start developinga survey based that will be
informed by the qualitativecomponent.
But in terms of the surveydevelopment, this student is
thinking about whether to use anominal group technique or
whether to use a different typeof consensus method in order to
develop the content of thesurvey.
So not only will she gainexperience in designing a survey
(12:16):
, it'll also gain experience inusing a particular methodology
that helps improve the rigor ofthe content of the survey, make
sure the questions are reallymeaningful and relevant to the
target audience, and then she'llcollect the data and then
she'll do all of the analysis.
And so then in the analysiscomponent she'll also receive
some training and gain someexperience in doing more of a
(12:39):
statistical analysis.
And so she'll come out of herPhD with well-developed
qualitative skills,well-developed quantitative
skills, and can then apply thoseto future studies in terms of
designing.
And it also helps you learn howto learn other methods And so
you can then continue to learnhow to use other methods in
research as you continue yourresearch and academic career.
Matt Burgess (13:00):
Yeah, okay, I think sort of before I studied
research methods, I thought thatquantitative and qualitative
like they were completelyseparate and there was no
overlap and you kind of justpick one or the other And if you
were doing mixed methods it wassort of like adding two things
together.
But I think it's not asclear-cut as that.
Dr Laura Forrest (13:21):
It's sort of a bit gray and there's
overlapping sort of areas andyeah, It definitely depends on
your overarching framework too,because if you're using mixed
methods, according to theframeworks that you may choose,
you actually need to be able tobring those two methods, the
findings from those two methods,together to complement and to
(13:41):
help explain each other.
If you're doing multi-methods,then you might have standalone
studies that are complementary,but you don't need to bring the
findings together.
Whether you use quantitative orqualitative or both, will
depend on what it is you'reasking and what is the best way
of answering that question Andso some questions, it's much
(14:02):
better to use qualitative If youdon't know much about whatever
it is you're studying and youwant to explore the area,
whereas quantitative you mayhave more of a defined.
I really want to know x y z Andtherefore you have a say, a
validated instrument, or youdesign survey questions to
answer that exact x y z question.
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(15:33):
Excellent.
Now, in preparation for thisinterview, i had a look at some
of your publications, and onecute little thing that I noticed
was that you've published somepapers with your husband.
Is that something that you dooften?
It's not something that I'vereally noticed before.
Dr Laura Forrest (15:57):
No, it was circumstantial.
It was a time and a place.
That came about because, afterI finished my PhD in Melbourne,
my husband was then accepted tostudy medicine at the Australian
National University in Canberra.
So we left Melbourne and wemoved to Canberra.
(16:17):
Well, actually, i stayed inMelbourne and finished writing
my thesis for a good six monthswhile he went and started
medicine, so the two of us werelike serial students for quite
some time.
When I got up to Canberra, i gota job, also working at the
Australian National University.
I got a postdoctoral position,but it wasn't in genetic or
genetic counselling, it was inprimary health care.
(16:39):
So if you look at my list ofpublications, you can see
there's a chunk of publicationsthat are all about GPs and
practice nurses and primary care.
That's because that's that timeI spent working in Canberra.
We were there for about fouryears Now.
While I was working andsupporting my husband to study,
he did pick up a little bit ofcasual work every now and again.
(17:00):
One of the random jobs that hedid was he became employed at
the research institute, where Iworked to help out with one of
our studies, and so then, whenwe were publishing, he got to be
an author on the papers.
So it wasn't that, you know, itwasn't that we were purposely
collaborating to do that studytogether.
It was more that I was thepostdoc working on that study
(17:25):
and he was employed as a casualkind of research assistant role
for the same one.
Matt Burgess (17:30):
What a beautiful story.
Dr Laura Forrest (17:34):
So, but since then, no, i mean he often jokes
like could you just sneak me into your authorship on one of
your more recent projects?
He really, you know he's reallyinterested in research and
we've both ended up working inoncology, so but he just, but
I'm fairly I play fairly hardball with that because obviously
we have.
We abide by the authorshipguidelines that are established.
(17:58):
The National Health and MedicalResearch Council here in
Australia have authorshipguidelines, as do a lot of other
international organisations,with what, who's allowed to be
an author on a paper and whatyou have to do to earn
authorship.
And so he does not get acurrency anymore.
Matt Burgess (18:15):
Yeah, sort of just tacking on your spouse probably
isn't the best way to go.
So Not very ethical though, butsort of getting back to your PhD
subject, so it was familialcommunication.
One of the publications that Isaw that you wrote was with a
(18:36):
Yasmin Blastra and it was calledExperience of Asian Males
Communicating Cardiac GeneticRisk with the Family.
Now Yasmin was a beautifulguest of mine on Demistrifying
Genetics back in season one, butI thought it was an interesting
paper because it was sort ofcomparing sort of the Western
(18:59):
ideas with more Asian or Eastern, like were there big
differences that you came across?
Dr Laura Forrest (19:07):
Matthew, you're really testing me because
that actually wasn't from myPhD.
That was the first author ofthat paper.
Sylvia Cam is a geneticcounsellor, i believe she's in
Malaysia.
She came to Australia to do herMasters of Genetic Counselling
and Yasmin and I co-supervisedher for her research I'm pretty
sure Avon Machokka was on thepaper as well as another
(19:30):
supervisor And so Sylvia, forher placement I think, went to
Singapore, yeah, and while shewas there did interviews with
men about how they communicatethis information in their
families.
So the interviews were reallyinteresting because just the
whole style of qualitativeinterview was really quite
(19:51):
different.
And Sylvia, because she'smultilingual, could you know,
there's a lot of slang termsthat we use throughout the
interviews and so she kind oftranslate for us what that would
mean.
So a lot of the men weren'tvery forthcoming, so there
wasn't a lot of kind of in-depthdescription.
But culturally the data wasfascinating and it does.
(20:16):
It did show that there weredifferent ways of thinking about
family and about communication.
I think it was in Singapore,i'm sorry my memory is failing
me, but because there's, becausethe participants were
representative of the differentcultures, of different people
who live in Singapore, therewere quite different findings
what we usually would thinkabout.
(20:39):
But having said that, well,there's a few things that are
really important about thatresearch.
We absolutely need more researchin genetic counselling, but
probably in health care ingeneral, with people who are not
white, and so it was such anamazing opportunity to be able
to supervise a student who coulddo this research in another
country, because we just don'thave the evidence base to
(21:01):
support our practice for peoplewho maybe are in countries with
different ethnicities anddifferent cultures, and even in
Australia we're really bad atrecruiting people who are not
white to our research, and sothat's something that we are
thinking very carefully aboutwhen we recruit, but also making
sure that when we design, say,even just something as simple as
(21:23):
the demographic section at thebeginning of a survey, that we
have more questions that go togreater depth to try and capture
people's ethnicity, theirculture, even their religion,
because that can be somethingthat drives people's beliefs and
motivations around genetics.
So that was a really great studyto be involved in, and I think
that also really speaks to theamazing opportunities that you
(21:44):
get as a research supervisorwhen you supervise students who
are coming at things from adifferent perspective or from a
different country, and not onlydo you get to supervise a
student, but you also get towork in a team with people who
you wouldn't normally work with.
So I'm friends with Yasmin andEvan professionally and
personally, but I don't actuallyget to work with them that
often, and so that was reallyfun.
(22:06):
It's always a really greatopportunity.
Matt Burgess (22:09):
Oh good, yeah, i know diversity is such a major
theme in a lot of areas ofacademia and research and, from
a genetics point of view, a lotof our genetic testing has been
on white populations and I knowfrom variants of uncertain
(22:31):
significance.
We really need to have peoplefrom all different ethnicities
and backgrounds, but I thinkthat you did really well at
explaining the importance fromlike a qualitative research
point of view or like enrollment.
Yeah, so that's really cool,and when I was thinking of sort
(22:52):
of what we were going to talkabout today, the mystifying
genetics is really a geneticcounseling podcast, but I've
never actually defined geneticcounseling, so I thought it
might be fun for me to just readone of the definitions that
I've got.
So this is from a few years agofrom the National Society of
(23:13):
Genetic Counseling, but it saysthat genetic counseling is the
process of helping peopleunderstand and adapt to the
medical, psychosocial andfamilial implications of genetic
contributions to disease.
This process integrates thefollowing interpretation of
family and medical histories toassess the chance of disease
occurrence and recurrence,education about inheritance,
(23:35):
testing, management, preventionresources and research and
counseling to promote informedchoices and adaptation to the
risk or condition.
Now that's a bit of a mouthful.
But the reason that I sort ofdefined that was recently.
You and I were at a conferencein Glasgow, so the European
(23:56):
Society of Human GeneticsConference, and we were in a
session and the speaker wastalking about outcomes of
genetic counseling and then wesort of got onto the topic of
the genetic counseling outcomesscale.
So I kind of thought, okay,genetic counseling is a new
(24:17):
profession but it's been aroundfor quite a while, you know like
a few decades.
Then it took us a while todefine it and then we've defined
it now, but now it's kind oflike what do we actually do and
how do we measure that?
And then you know.
So you mentioned the idea oflike validated scales, and so we
have one now and I just wantedwondered if you could sort of
(24:40):
comment on this scale and sortof what it means to you and like
, do you use it?
and yeah, can you tell us alittle bit about it?
Dr Laura Forrest (24:49):
Absolutely So.
The genetic counseling outcomescale was was developed by
Marian McAllister, who is theconvener of the Master of
Genetic Counseling course atCardiff University, and she
developed this scale as part ofher PhD and when she was
actually based in Manchester.
The scale consists of 24 items,so it's not super short.
(25:11):
But I think I need to take astep back and talk to you first
about how the scale wasdeveloped, because that, to me,
speaks to why it's so important.
This scale is important and whywhy I use it in my research.
The way the scale was developedwas Marian started with a lot
of qualitative work to initiallydefine what it is that patients
get out of genetic counseling.
It was a bit like a let's lookinside the black box type
(25:33):
exercise because that until thatpoint hadn't been really well
defined and not from a patient'sperspective, like we have the
those professional definitionsabout what we think as
healthcare professionals geneticcounseling is.
But what Marian did and this isin the late 2000s that she did
these interviews and she's andthis is all published work
Patients responded that whatthey really got out of genetic
(25:56):
counseling was a sense ofempowerment.
But the empowerment is actuallyconsists of five different
constructs and again you'regoing to test my recall ability,
but they include things like asense of control, so behavioural
control, emotional control,cognitive control over the
condition, hope.
(26:17):
And the fifth one is escapes me, but you can kind of see.
What I really like about this isthis positive framing of
genetic counseling.
It's not a measure that thatlooks at the deficits or the
things that people might not notget out of genetic counseling
or the way that people mightfeel bad after genetic
(26:39):
counseling.
This focuses on, you know, ifwe are, as a profession,
providing genetic counseling orengaging in a genetic counseling
process with the patient andtheir family, we are promoting
these beneficial outcomes forthem where they can leave the
session and feel like they cando something, that they they can
act on this information andwhether the acting is acting to
(27:03):
inform at risk relatives whetherthe acting is knowing what
their next step is in terms ofunderstanding that their risk
management available to themthat's particularly important in
the cancer space or whether theacting is understanding how
their children or their futurechildren might be at risk and
say for future children,understanding what the options
(27:24):
are for them in terms ofreproductive decision-making.
It's, you know, the scalemeasures that those kind of
concepts for patients and it'sbeen designed as a measure that
you, that you can use before andafter a genetic counseling
session to look at the patientschange in their empowerment.
(27:45):
And so this tool is reallyuseful for us in research
because we can we can, well, wecan just straight up measure
people's genetic counselingexperience pre and post and say
you know, how are we doing inour service.
Or we could compare thatbaseline to, say, putting an
intervention in place in agenetic counseling appointment
(28:06):
and seeing if the interventionchanges patients empowerment.
Now, without a tool, without avalidated measure like this,
like the G-COS, it means we haveto look for other ways to
measure what's happening withinthe appointment and whether
there's any change in patientsoutcomes after a genetic
counseling appointment or agenetic counseling process.
(28:28):
And traditionally, if you lookat the genetic counseling
research literature, you can seethat people have used other
tools and the one, some of themost common ones, are things
like the hospital anxiety anddepression scale and the impact
of events scale.
Now, those are historically useyou know their psychology
(28:50):
driven tools but they'remeasuring things in terms of the
negative, in terms of, you know, are people depressed after
genetic counseling?
are they anxious after theirgenetic counseling was that, was
the receipt of geneticinformation so impactful that
they were distressed?
Now, yes, we are aware, ofcourse, that and it's very well
(29:14):
documented you hear it time andtime again that when people
receive genetic information,they certainly experience a dip
in the way they feel about thisthemselves and their lives.
There is that tendency forpeople to feel a bit depressed
and anxious, and that's totallyunderstandable.
But we do know that theyactually come back to baseline
with by about a six month mark.
So people do kind of come toterms with the information
(29:35):
they've been given to the mostpart.
But instead, what the G-COS ismeasuring is was that genetic
counseling process?
did that?
did that provide them with witha sense of hope to?
you know, is there are theirpositives actually to come out
of genetic counseling?
and I think that's hugelyimportant to think about the way
that we practice in that way,as that we actually bring
something positive, somethingbeneficial to people.
(29:57):
We're not.
We're not the bringer of doomand gloom that we're going to
impact their lives so severelythat we then need to measure it
with.
You know, anxiety anddepression scales.
So that to me, why the G-COS isso important.
It was a significant piece ofwork for its time and we we have
more scales now that have beendeveloped specifically for the
(30:18):
genetic counseling process orthe delivery of genetic
information, which which we useroutinely in a lot of our
studies.
An example of how I'm using thegenetic counseling outcome
scale right now is using it in aclinical trial, and we are
testing a patient screening toolthat was developed by Mary Jane
Esplan in 20 and published in2013, and so Mary Jane Esplan is
(30:42):
from Canada and the and MaryJane developed the genetic
psychosocial risk instrument.
Now this instrument can be used.
You can you can ask patients orclients to complete it within
three days of their geneticcounseling appointment, and that
that gives you an indication ofwhether they are an increased
risk of distress during andafter the genetic counseling
(31:04):
process, the genetic counselingand testing process, and then
you can theoretically identifypatients who are at increased
risk of distress.
And well, there's a lot ofdifferent options.
You could have a look at whatthey've, what they've reported
through the, through the GPRI,the genetic psychosocial risk
instrument, and see if there areparticular things driving their
(31:24):
risk of distress, and thenaddress them in your genetic
counseling session, or you mightjust be aware that they're in
increased risk of distress andthey just need more time.
Maybe they need more supportafter the appointment, and so
that tool, that GPRI tool, isalso something that we're really
interested in looking at usingroutinely in our practice in the
(31:46):
Parkville for Middle CancerCentre and Genomic Medicine,
which is the department that Iwork in in Melbourne, and that
department is a con jointdepartment between the Peter
McCallum Cancer Centre and theRoyal Melbourne Hospital.
So we have a big team and wesee a lot of patients, so that
using the GPRI might be reallyuseful for our practice also
(32:08):
because we have amulti-disciplinary team.
So patients come in to see usand they will usually see
genetic counselors, but theyalso may see a medical fellow
who's training to be a clinicalgeneticist.
They may see a medicaloncologist or a clinical
geneticist themselves.
Sometimes they see both.
I like have more of amulti-disciplinary approach and
sometimes they don't, and so ourthinking really is that if we
(32:30):
can use the GPRI to identifypatients who have a greater
psychosocial need, then thosepeople need to be seen by a
genetic counselor.
Matt Burgess (32:39):
That's great.
Yeah, i just love the positiveapproach that G-Cos has And it
is like sort of focusing on thatempowerment and that hope And
yeah, i think you're right withlike a lot of the other scales.
It is kind of that sort ofabnormal psychology, like the
depression, anxiety and you knowmost of our clients.
(32:59):
You know that may not be sortof that relevant, but yeah, i
mean, i have all of these thingsto go through with you And I
think we're running out of time.
But Sorry, I talked too much, Nono, no, this has been a great
conversation.
I've loved it, i think.
Just to finish, though, i lovethe qualitative research nature
(33:23):
that genetic counseling has AndI think that the more that I'm
sort of learning aboutqualitative research and sort of
moving away from quantitative,like I don't think, i really
appreciated the power of a goodquote.
And when I was looking at someof your papers, there were two
that kind of stuck out with meAnd I mean I would love to talk
(33:44):
about both of these papers, butI'll just read the title.
So one is about Lee Fraumeni,by your student, rowan Ford
Shepherd.
So the title is I need to knowif I'm going to die young.
So adolescents and young adultexperiences of genetic testing
for Lee Fraumeni syndrome.
(34:04):
Like wow, like that, that'shuge.
Yeah, such an important quote.
And I guess the other one thatkind of grabbed me was a paper
called social media usage infamily communication about
genetic information.
I no longer speak with mysister, but she needs to know
(34:26):
Any little comments about thosepapers.
Dr Laura Forrest (34:31):
Yeah, i mean the Lee Fraumeni study that
Rowan undertook for his PhD.
The interviews were justdevastating, uplifting, like
when you, when we were codingthose transcripts just a gamut
of emotions you'd experience waslike a roller coaster coming,
(34:52):
gaining some insight into whatit's like for these young people
to live with Lee Fraumeni, andso that quote is powerful.
But there were so many more Andif you read the paper there's
lots of really really greatquotes that exemplify the
analysis, the findings in thatpaper.
So that's really the insight.
(35:12):
And the family, the social mediastudy was done by another
master of genetic counsellingstudents, sarah Layton, and that
quote was great because itreally went to show that even
when people weren't in contactwith their outreach family
members often there's oftenchallenging family dynamics and
they maybe don't speak to peopleThey still understood the
importance of the geneticinformation for that relative
(35:36):
that you know.
There was a sense of altruism,despite maybe a breakdown in a
relationship that they werestill willing to tell someone.
And social media in this studywas demonstrating to be a really
useful way of people, withouthaving to you know kind of
reconnect or have some kind ofyou know, in-depth conversation
(36:00):
with people, they could put theinformation out there to the
at-risk relative.
They could communicate it in away that was enabled them to
maybe protect themselves ifthey're in a challenging
relationship, or but they stilldid it And that quote was a
really good one to kind ofexemplify that.
So, yeah, i love qualitativework.
I actually think it's harderthan quantitative, because the
(36:23):
effort that is required in thepreparing for an interview,
getting that interview scheduleright, doing the interviews they
are exhausting.
You really pour yourself intoit.
You just spend, however long ittakes, absolutely listening to
the participant and respondingto them and gently guiding them,
(36:44):
you know, to get theinformation you need, the data
that you need, and then theanalysis is like never ending.
You could do it forever.
I think you're right.
Yeah, i think peopleunderestimate it.
The qualitative, work.
Matt Burgess (36:56):
It really does sort of.
You know, it's important thatthe researchers are involved and
like it's more subjective inthe fact that sort of their
background and where they'recoming from and their point of
view.
That's all really relevant.
So well, thank you so much,laura.
(37:18):
I've really enjoyed chattingwith you.
Dr Laura Forrest (37:20):
Yeah, thank you, matt, it's been a really
interesting conversation.
Matt Burgess (37:24):
Excellent, okay, well, i'll let you go.
Have fun with Alfie and we'lltalk to you later.
Dr Laura Forrest (37:32):
Thanks, matt.
I'm looking forward to catchingup with you soon.
Matt Burgess (37:35):
Okay, bye, bye, bye.
Hello and welcome to a new season of the
Mystifying Genetics.
I'm your host, matt Burgess.
I'm a genetic counsellor livingand working in the United
States.
However, i am from Australiawhere I trained.
This is season three of thystifying Genetics and I just
wanted to say a big thank you toall of the listeners so far.
(00:22):
I have really enjoyed receivingyour feedback and your comments
and I hope that you enjoy thisnew season, and I'd like to say
a big thank you to our sponsorsfor this episode, track Gene.
I'd like to thank my producer,omi.
(00:43):
I think he does a fabulous jobat making this podcast sound as
good as it does, so thank youvery much.
So in this episode of theMystifying Genetics with Laura
Forrest, i speak to Laura, whois an academic and an associate
genetic counsellor living inMelbourne, australia.
(01:04):
We talk about her academicinterests and her PhD, which was
in familial communications.
We also speak about some of herpublications, the genetic
counselling outcome scale, andreally dig deep, or a little bit
deeper, into qualitativeresearch in clinical genetics.
(01:27):
Dr Laura Forrest, welcome tothe podcast.
Dr Laura Forrest (01:32):
Thank you very much, matthew Burgess.
Matt Burgess (01:34):
It's very exciting to have you.
This is episode one of seasonthree, so yeah, very excited.
Dr Laura Forrest (01:42):
Thank you, i'm absolutely delighted to be
talking to you this morning.
Matt Burgess (01:46):
So first things first.
you have a new dog, So tell usall about your puppy.
Dr Laura Forrest (01:54):
We do have a new dog.
His name is Alfie and he is ablack Labrador and he's
currently about 13 and a halfweeks old, so he's still very
little.
He's very swish and the kidsabsolutely adore him, so he's
fitting right into my family.
But I am going to have to havethe rug near the front door deep
(02:14):
cleaned because he seems tohave taken a liking to using the
rug as a toilet spot.
But we are on it in terms ofgetting him outside, so he is
almost toilet trained.
Matt Burgess (02:26):
Oh well, it sounds like he's sort of going in the
right direction, so that's good.
Dr Laura Forrest (02:30):
He's trying to get there, yeah.
Matt Burgess (02:32):
Oh well, i hope that my beautiful doggy Banjo
will get to play with Alfie inthe next few months.
Dr Laura Forrest (02:38):
Yeah, that would be really exciting.
Matt Burgess (02:41):
Yeah, now as you know, i'm doing a little bit of
study at the moment and I juststarted at my thesis and before
I started I met with mysupervisor and she is actually a
therapist herself and she sortof went to great lengths to talk
about how, you know, givingfeedback and it's not personal
(03:02):
and you know she's trying tomake, like my work better and
you know, don't think of it ascriticism and I thought yeah
yeah, that all sounds fine.
And then the first time I gotwork back I was like who is this
woman Like?
I was like really cranky andwas like, ah, so you have a PhD
in genetic counseling.
Is that how you felt when youreceived feedback from your
(03:26):
supervisors?
Dr Laura Forrest (03:29):
Absolutely.
I had four supervisors for myPhD and each of them was a
really multi-disciplinary teamAnd so each of them brought
something different to thesupervision and therefore gave
me different styles of feedbackwhen they looked at my work And
I took different things fromeach of their feedback.
But there's always that initialkind of when you, you know, say
(03:54):
it's an electronic document,you open it up and you see all
of the track changes or thecomments and having to kind of
take a beat, take a moment andseparate yourself from what
they've given you.
And I think what I learned fromthat experience and also over
the years because obviouslysince then I've written lots of
(04:15):
different papers and you getpeer reviewed for your
publications is that it's oftennot personal and the feedback
that people have given you isonly going to make your work
better.
And the other thing that Ialways try and keep in mind and
it's almost about maintainingthat positive regard for your
supervisors in your mind and notlike and not just thinking oh
(04:36):
my God, who are you Is thatthey've given is the more
feedback they've given you.
It means the more time they'vetaken with your work, so if
they've absolutely gone to townon a piece of work of yours.
It actually means they've spenta lot of their own time and
effort And it means they'rereally invested in you.
What I find disappointing iswhen people read my work now and
(04:58):
get back to me with reallysuperficial, like maybe
grammatical changes or very few,because it means you know
they've kind of just skim, readit and gone.
Yeah, yeah, this is fine.
Yeah, you don't get thatopportunity for improvement and
for learning through thatprocess.
Matt Burgess (05:11):
Oh, it sounds like you've come full circle.
Dr Laura Forrest (05:15):
Probably it's been many years now.
Matt Burgess (05:19):
So now you supervise PhD students, do you
feel like you're able to be thatempathic kind of supervisor and
give good feedback in a lovingway, and do they look at you
with this sort of positiveregard?
Dr Laura Forrest (05:36):
I hope so.
I hope so.
I suppose what's in my mindright now is that I have
different relationships witheach of my PhD students.
It depends who they are andwhere they're at in their lives
and what they bring to their PhD, and so some of them they all
need different things from me asa supervisor, and the same goes
when I'm looking at their work.
(05:56):
They you know, some of themneed more help with general
structure, whereas others mightyou might need a more critical
lens in terms of what exactlythey're writing about.
I've been very lucky, i have tosay.
The students that I'vesupervised so far to date
produced very high quality work,and so you're often providing
feedback more about have youthought about it from this
(06:18):
perspective rather than, youknow, having to correct grammar
or spelling or things like that.
But my comments are probablyand I think this is something
that we all do when we write,whether you write an email or
whether you're writing onwriting feedback for someone's
work There's two things thatimpact how you write for someone
or a comment directed tosomeone.
It depends on your relationshipwith them, but it also depends
(06:40):
on your own frame of mind, likeif I'm, if I'm commenting on a
student's work later at night,my comments might be shorter and
sharper because I'm tired,whereas if I'm doing it fresh,
i've probably got more reserve,more more kind of emotional
empathy to to, to make sure,when I word things to them, that
I can do it in a kinder,gentler way.
I often post comments asquestions do you think that?
(07:03):
or how about considering thisrather than do it this way?
Because you want that kind ofdialogue?
Yeah, and sometimes I'd likeyou know, if I've got a really
well established relationshipwith a student, i'll often write
, like you know, i'll be a bitmore kind of jokey, you know,
well, that was a bit shit.
Like, let's try and let's tryand make that Like.
(07:24):
I know you, i know you can dobetter than this.
Matt Burgess (07:27):
Okay.
So you sort of had theopportunity to build that
rapport and you've got thatrelationship there.
Dr Laura Forrest (07:33):
Yeah, but when you first start out, absolutely
And like if I was commenting on, like if I'm involved in a
manuscript with co-authors who Idon't know very well, i would
keep my tone very polite and tryand provide good quality,
rigorous feedback.
That's not but it's factual Andyeah, and to try and make sure
there's that separation betweenit's clear, i'm not talking
(07:54):
about the person, i'm talkingabout the piece of work.
Matt Burgess (07:57):
Excellent.
Okay, so your PhD is in geneticcounseling and I think it's
about familial communication.
Is that what it was in?
Dr Laura Forrest (08:09):
Yes, yeah, so I did my PhD way back when I
started in 2005 and I had mythesis in 2009 and I was based
at the Murdoch Children'sResearch Institute, enrolled
through the University ofMelbourne, and my supervision
team wanted to do a study infamily communication to look at
(08:32):
how or whether at-risk relativeswere informed that there was a
genetic condition in the family,because I was sitting down at
the Murdoch Children's the typesof genetic conditions that I
included.
The families had differenttypes of genetic conditions,
most of which were pediatric.
I did a mixed methods studyover the course of three and a
(08:54):
bit years and that included aseries of interviews with
parents who had children withdifferent genetic conditions.
I looked at how genetic healthprofessionals practice in terms
of what happens in a consult.
Do they, how, do they supportand encourage families to
communicate?
That survey was pretty novel atthe time because it was online
(09:14):
and back in the mid-2000s wedidn't do a lot of that.
But it was important for thesurvey to be online because I
sent it out internationally andI got a pretty good
representation internationallyfrom different genetic health
professionals and it was reallyinteresting to see the practice.
But the way we structured thesurvey was to compare four
different conditions to look atwhether their practice is
(09:35):
different depending on the modeof inheritance or the severity
of the condition, and then wealso looked at international
guidelines and position papersto see what our professional
societies recommend us to do Andall of these pieces of work.
I'm pretty sure there was someother component, but it was a
while ago.
I published all of thesedifferent sub-studies that
formed the whole within mythesis.
(09:58):
Yeah, so it's been quite sometime.
Family communication is kind ofone of those topics that I feel
very comfortable within becausemy PhD was in that topic, but I
have to admit I haven't done alot of research since then in
that area.
I have just become involved asa collaborator for an
(10:18):
international study that'sactually running from the
University of South Florida andMarlia Dean Krusell is leading
that study with a PhD student,and they're also doing an
international online surveystudy asking people with
hereditary conditions to fillout a survey about what their
motivations are to communicate,and that looks like it's going
(10:40):
to be really interesting.
So we're just trying to getthat off the ground right now at
the Peter McCallum so that wecan recruit our patient cohort
for them.
Matt Burgess (10:48):
Wow, well, that sounds cool.
And what do you think of doinga mixed method study?
Like I think I just assumedthat your PhD was qualitative,
but do you think that it's sortof the best of both worlds, or
like, is it easier to sort ofjust do one or the other?
no-transcript.
Dr Laura Forrest (11:09):
I think as a PhD student, you have an amazing
opportunity to train for afuture academic career and to
train as a researcher Sorryabout the noise outside the room
And so I think the moredifferent types of research that
you can do within your PhD, thebetter equipped you are for
your future research career, ifthat's what you choose to do.
(11:30):
So I think mixed methods ormulti-method studies are a
really great idea, because itgives you the opportunity to
learn all of those differentskills.
So an example for actually allof my students one of the ones
that is currently the mostcontact with at the moment has
just completed a qualitativecomponent doing interviews with
(11:52):
health professionals.
She's about to start developinga survey based that will be
informed by the qualitativecomponent.
But in terms of the surveydevelopment, this student is
thinking about whether to use anominal group technique or
whether to use a different typeof consensus method in order to
develop the content of thesurvey.
So not only will she gainexperience in designing a survey
(12:16):
, it'll also gain experience inusing a particular methodology
that helps improve the rigor ofthe content of the survey, make
sure the questions are reallymeaningful and relevant to the
target audience, and then she'llcollect the data and then
she'll do all of the analysis.
And so then in the analysiscomponent she'll also receive
some training and gain someexperience in doing more of a
(12:39):
statistical analysis.
And so she'll come out of herPhD with well-developed
qualitative skills,well-developed quantitative
skills, and can then apply thoseto future studies in terms of
designing.
And it also helps you learn howto learn other methods And so
you can then continue to learnhow to use other methods in
research as you continue yourresearch and academic career.
Matt Burgess (13:00):
Yeah, okay, I think sort of before I studied
research methods, I thought thatquantitative and qualitative
like they were completelyseparate and there was no
overlap and you kind of justpick one or the other And if you
were doing mixed methods it wassort of like adding two things
together.
But I think it's not asclear-cut as that.
Dr Laura Forrest (13:21):
It's sort of a bit gray and there's
overlapping sort of areas andyeah, It definitely depends on
your overarching framework too,because if you're using mixed
methods, according to theframeworks that you may choose,
you actually need to be able tobring those two methods, the
findings from those two methods,together to complement and to
(13:41):
help explain each other.
If you're doing multi-methods,then you might have standalone
studies that are complementary,but you don't need to bring the
findings together.
Whether you use quantitative orqualitative or both, will
depend on what it is you'reasking and what is the best way
of answering that question Andso some questions, it's much
(14:02):
better to use qualitative If youdon't know much about whatever
it is you're studying and youwant to explore the area,
whereas quantitative you mayhave more of a defined.
I really want to know x y z Andtherefore you have a say, a
validated instrument, or youdesign survey questions to
answer that exact x y z question.
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(15:33):
Excellent.
Now, in preparation for thisinterview, i had a look at some
of your publications, and onecute little thing that I noticed
was that you've published somepapers with your husband.
Is that something that you dooften?
It's not something that I'vereally noticed before.
Dr Laura Forrest (15:57):
No, it was circumstantial.
It was a time and a place.
That came about because, afterI finished my PhD in Melbourne,
my husband was then accepted tostudy medicine at the Australian
National University in Canberra.
So we left Melbourne and wemoved to Canberra.
(16:17):
Well, actually, i stayed inMelbourne and finished writing
my thesis for a good six monthswhile he went and started
medicine, so the two of us werelike serial students for quite
some time.
When I got up to Canberra, i gota job, also working at the
Australian National University.
I got a postdoctoral position,but it wasn't in genetic or
genetic counselling, it was inprimary health care.
(16:39):
So if you look at my list ofpublications, you can see
there's a chunk of publicationsthat are all about GPs and
practice nurses and primary care.
That's because that's that timeI spent working in Canberra.
We were there for about fouryears Now.
While I was working andsupporting my husband to study,
he did pick up a little bit ofcasual work every now and again.
(17:00):
One of the random jobs that hedid was he became employed at
the research institute, where Iworked to help out with one of
our studies, and so then, whenwe were publishing, he got to be
an author on the papers.
So it wasn't that, you know, itwasn't that we were purposely
collaborating to do that studytogether.
It was more that I was thepostdoc working on that study
(17:25):
and he was employed as a casualkind of research assistant role
for the same one.
Matt Burgess (17:30):
What a beautiful story.
Dr Laura Forrest (17:34):
So, but since then, no, i mean he often jokes
like could you just sneak me into your authorship on one of
your more recent projects?
He really, you know he's reallyinterested in research and
we've both ended up working inoncology, so but he just, but
I'm fairly I play fairly hardball with that because obviously
we have.
We abide by the authorshipguidelines that are established.
(17:58):
The National Health and MedicalResearch Council here in
Australia have authorshipguidelines, as do a lot of other
international organisations,with what, who's allowed to be
an author on a paper and whatyou have to do to earn
authorship.
And so he does not get acurrency anymore.
Matt Burgess (18:15):
Yeah, sort of just tacking on your spouse probably
isn't the best way to go.
So Not very ethical though, butsort of getting back to your PhD
subject, so it was familialcommunication.
One of the publications that Isaw that you wrote was with a
(18:36):
Yasmin Blastra and it was calledExperience of Asian Males
Communicating Cardiac GeneticRisk with the Family.
Now Yasmin was a beautifulguest of mine on Demistrifying
Genetics back in season one, butI thought it was an interesting
paper because it was sort ofcomparing sort of the Western
(18:59):
ideas with more Asian or Eastern, like were there big
differences that you came across?
Dr Laura Forrest (19:07):
Matthew, you're really testing me because
that actually wasn't from myPhD.
That was the first author ofthat paper.
Sylvia Cam is a geneticcounsellor, i believe she's in
Malaysia.
She came to Australia to do herMasters of Genetic Counselling
and Yasmin and I co-supervisedher for her research I'm pretty
sure Avon Machokka was on thepaper as well as another
(19:30):
supervisor And so Sylvia, forher placement I think, went to
Singapore, yeah, and while shewas there did interviews with
men about how they communicatethis information in their
families.
So the interviews were reallyinteresting because just the
whole style of qualitativeinterview was really quite
(19:51):
different.
And Sylvia, because she'smultilingual, could you know,
there's a lot of slang termsthat we use throughout the
interviews and so she kind oftranslate for us what that would
mean.
So a lot of the men weren'tvery forthcoming, so there
wasn't a lot of kind of in-depthdescription.
But culturally the data wasfascinating and it does.
(20:16):
It did show that there weredifferent ways of thinking about
family and about communication.
I think it was in Singapore,i'm sorry my memory is failing
me, but because there's, becausethe participants were
representative of the differentcultures, of different people
who live in Singapore, therewere quite different findings
what we usually would thinkabout.
(20:39):
But having said that, well,there's a few things that are
really important about thatresearch.
We absolutely need more researchin genetic counselling, but
probably in health care ingeneral, with people who are not
white, and so it was such anamazing opportunity to be able
to supervise a student who coulddo this research in another
country, because we just don'thave the evidence base to
(21:01):
support our practice for peoplewho maybe are in countries with
different ethnicities anddifferent cultures, and even in
Australia we're really bad atrecruiting people who are not
white to our research, and sothat's something that we are
thinking very carefully aboutwhen we recruit, but also making
sure that when we design, say,even just something as simple as
(21:23):
the demographic section at thebeginning of a survey, that we
have more questions that go togreater depth to try and capture
people's ethnicity, theirculture, even their religion,
because that can be somethingthat drives people's beliefs and
motivations around genetics.
So that was a really great studyto be involved in, and I think
that also really speaks to theamazing opportunities that you
(21:44):
get as a research supervisorwhen you supervise students who
are coming at things from adifferent perspective or from a
different country, and not onlydo you get to supervise a
student, but you also get towork in a team with people who
you wouldn't normally work with.
So I'm friends with Yasmin andEvan professionally and
personally, but I don't actuallyget to work with them that
often, and so that was reallyfun.
(22:06):
It's always a really greatopportunity.
Matt Burgess (22:09):
Oh good, yeah, i know diversity is such a major
theme in a lot of areas ofacademia and research and, from
a genetics point of view, a lotof our genetic testing has been
on white populations and I knowfrom variants of uncertain
(22:31):
significance.
We really need to have peoplefrom all different ethnicities
and backgrounds, but I thinkthat you did really well at
explaining the importance fromlike a qualitative research
point of view or like enrollment.
Yeah, so that's really cool,and when I was thinking of sort
(22:52):
of what we were going to talkabout today, the mystifying
genetics is really a geneticcounseling podcast, but I've
never actually defined geneticcounseling, so I thought it
might be fun for me to just readone of the definitions that
I've got.
So this is from a few years agofrom the National Society of
(23:13):
Genetic Counseling, but it saysthat genetic counseling is the
process of helping peopleunderstand and adapt to the
medical, psychosocial andfamilial implications of genetic
contributions to disease.
This process integrates thefollowing interpretation of
family and medical histories toassess the chance of disease
occurrence and recurrence,education about inheritance,
(23:35):
testing, management, preventionresources and research and
counseling to promote informedchoices and adaptation to the
risk or condition.
Now that's a bit of a mouthful.
But the reason that I sort ofdefined that was recently.
You and I were at a conferencein Glasgow, so the European
(23:56):
Society of Human GeneticsConference, and we were in a
session and the speaker wastalking about outcomes of
genetic counseling and then wesort of got onto the topic of
the genetic counseling outcomesscale.
So I kind of thought, okay,genetic counseling is a new
(24:17):
profession but it's been aroundfor quite a while, you know like
a few decades.
Then it took us a while todefine it and then we've defined
it now, but now it's kind oflike what do we actually do and
how do we measure that?
And then you know.
So you mentioned the idea oflike validated scales, and so we
have one now and I just wantedwondered if you could sort of
(24:40):
comment on this scale and sortof what it means to you and like
, do you use it?
and yeah, can you tell us alittle bit about it?
Dr Laura Forrest (24:49):
Absolutely So.
The genetic counseling outcomescale was was developed by
Marian McAllister, who is theconvener of the Master of
Genetic Counseling course atCardiff University, and she
developed this scale as part ofher PhD and when she was
actually based in Manchester.
The scale consists of 24 items,so it's not super short.
(25:11):
But I think I need to take astep back and talk to you first
about how the scale wasdeveloped, because that, to me,
speaks to why it's so important.
This scale is important and whywhy I use it in my research.
The way the scale was developedwas Marian started with a lot
of qualitative work to initiallydefine what it is that patients
get out of genetic counseling.
It was a bit like a let's lookinside the black box type
(25:33):
exercise because that until thatpoint hadn't been really well
defined and not from a patient'sperspective, like we have the
those professional definitionsabout what we think as
healthcare professionals geneticcounseling is.
But what Marian did and this isin the late 2000s that she did
these interviews and she's andthis is all published work
Patients responded that whatthey really got out of genetic
(25:56):
counseling was a sense ofempowerment.
But the empowerment is actuallyconsists of five different
constructs and again you'regoing to test my recall ability,
but they include things like asense of control, so behavioural
control, emotional control,cognitive control over the
condition, hope.
(26:17):
And the fifth one is escapes me, but you can kind of see.
What I really like about this isthis positive framing of
genetic counseling.
It's not a measure that thatlooks at the deficits or the
things that people might not notget out of genetic counseling
or the way that people mightfeel bad after genetic
(26:39):
counseling.
This focuses on, you know, ifwe are, as a profession,
providing genetic counseling orengaging in a genetic counseling
process with the patient andtheir family, we are promoting
these beneficial outcomes forthem where they can leave the
session and feel like they cando something, that they they can
act on this information andwhether the acting is acting to
(27:03):
inform at risk relatives whetherthe acting is knowing what
their next step is in terms ofunderstanding that their risk
management available to themthat's particularly important in
the cancer space or whether theacting is understanding how
their children or their futurechildren might be at risk and
say for future children,understanding what the options
(27:24):
are for them in terms ofreproductive decision-making.
It's, you know, the scalemeasures that those kind of
concepts for patients and it'sbeen designed as a measure that
you, that you can use before andafter a genetic counseling
session to look at the patientschange in their empowerment.
(27:45):
And so this tool is reallyuseful for us in research
because we can we can, well, wecan just straight up measure
people's genetic counselingexperience pre and post and say
you know, how are we doing inour service.
Or we could compare thatbaseline to, say, putting an
intervention in place in agenetic counseling appointment
(28:06):
and seeing if the interventionchanges patients empowerment.
Now, without a tool, without avalidated measure like this,
like the G-COS, it means we haveto look for other ways to
measure what's happening withinthe appointment and whether
there's any change in patientsoutcomes after a genetic
counseling appointment or agenetic counseling process.
(28:28):
And traditionally, if you lookat the genetic counseling
research literature, you can seethat people have used other
tools and the one, some of themost common ones, are things
like the hospital anxiety anddepression scale and the impact
of events scale.
Now, those are historically useyou know their psychology
(28:50):
driven tools but they'remeasuring things in terms of the
negative, in terms of, you know, are people depressed after
genetic counseling?
are they anxious after theirgenetic counseling was that, was
the receipt of geneticinformation so impactful that
they were distressed?
Now, yes, we are aware, ofcourse, that and it's very well
(29:14):
documented you hear it time andtime again that when people
receive genetic information,they certainly experience a dip
in the way they feel about thisthemselves and their lives.
There is that tendency forpeople to feel a bit depressed
and anxious, and that's totallyunderstandable.
But we do know that theyactually come back to baseline
with by about a six month mark.
So people do kind of come toterms with the information
(29:35):
they've been given to the mostpart.
But instead, what the G-COS ismeasuring is was that genetic
counseling process?
did that?
did that provide them with witha sense of hope to?
you know, is there are theirpositives actually to come out
of genetic counseling?
and I think that's hugelyimportant to think about the way
that we practice in that way,as that we actually bring
something positive, somethingbeneficial to people.
(29:57):
We're not.
We're not the bringer of doomand gloom that we're going to
impact their lives so severelythat we then need to measure it
with.
You know, anxiety anddepression scales.
So that to me, why the G-COS isso important.
It was a significant piece ofwork for its time and we we have
more scales now that have beendeveloped specifically for the
(30:18):
genetic counseling process orthe delivery of genetic
information, which which we useroutinely in a lot of our
studies.
An example of how I'm using thegenetic counseling outcome
scale right now is using it in aclinical trial, and we are
testing a patient screening toolthat was developed by Mary Jane
Esplan in 20 and published in2013, and so Mary Jane Esplan is
(30:42):
from Canada and the and MaryJane developed the genetic
psychosocial risk instrument.
Now this instrument can be used.
You can you can ask patients orclients to complete it within
three days of their geneticcounseling appointment, and that
that gives you an indication ofwhether they are an increased
risk of distress during andafter the genetic counseling
(31:04):
process, the genetic counselingand testing process, and then
you can theoretically identifypatients who are at increased
risk of distress.
And well, there's a lot ofdifferent options.
You could have a look at whatthey've, what they've reported
through the, through the GPRI,the genetic psychosocial risk
instrument, and see if there areparticular things driving their
(31:24):
risk of distress, and thenaddress them in your genetic
counseling session, or you mightjust be aware that they're in
increased risk of distress andthey just need more time.
Maybe they need more supportafter the appointment, and so
that tool, that GPRI tool, isalso something that we're really
interested in looking at usingroutinely in our practice in the
(31:46):
Parkville for Middle CancerCentre and Genomic Medicine,
which is the department that Iwork in in Melbourne, and that
department is a con jointdepartment between the Peter
McCallum Cancer Centre and theRoyal Melbourne Hospital.
So we have a big team and wesee a lot of patients, so that
using the GPRI might be reallyuseful for our practice also
(32:08):
because we have amulti-disciplinary team.
So patients come in to see usand they will usually see
genetic counselors, but theyalso may see a medical fellow
who's training to be a clinicalgeneticist.
They may see a medicaloncologist or a clinical
geneticist themselves.
Sometimes they see both.
I like have more of amulti-disciplinary approach and
sometimes they don't, and so ourthinking really is that if we
(32:30):
can use the GPRI to identifypatients who have a greater
psychosocial need, then thosepeople need to be seen by a
genetic counselor.
Matt Burgess (32:39):
That's great.
Yeah, i just love the positiveapproach that G-Cos has And it
is like sort of focusing on thatempowerment and that hope And
yeah, i think you're right withlike a lot of the other scales.
It is kind of that sort ofabnormal psychology, like the
depression, anxiety and you knowmost of our clients.
(32:59):
You know that may not be sortof that relevant, but yeah, i
mean, i have all of these thingsto go through with you And I
think we're running out of time.
But Sorry, I talked too much, Nono, no, this has been a great
conversation.
I've loved it, i think.
Just to finish, though, i lovethe qualitative research nature
(33:23):
that genetic counseling has AndI think that the more that I'm
sort of learning aboutqualitative research and sort of
moving away from quantitative,like I don't think, i really
appreciated the power of a goodquote.
And when I was looking at someof your papers, there were two
that kind of stuck out with meAnd I mean I would love to talk
(33:44):
about both of these papers, butI'll just read the title.
So one is about Lee Fraumeni,by your student, rowan Ford
Shepherd.
So the title is I need to knowif I'm going to die young.
So adolescents and young adultexperiences of genetic testing
for Lee Fraumeni syndrome.
(34:04):
Like wow, like that, that'shuge.
Yeah, such an important quote.
And I guess the other one thatkind of grabbed me was a paper
called social media usage infamily communication about
genetic information.
I no longer speak with mysister, but she needs to know
(34:26):
Any little comments about thosepapers.
Dr Laura Forrest (34:31):
Yeah, i mean the Lee Fraumeni study that
Rowan undertook for his PhD.
The interviews were justdevastating, uplifting, like
when you, when we were codingthose transcripts just a gamut
of emotions you'd experience waslike a roller coaster coming,
(34:52):
gaining some insight into whatit's like for these young people
to live with Lee Fraumeni, andso that quote is powerful.
But there were so many more Andif you read the paper there's
lots of really really greatquotes that exemplify the
analysis, the findings in thatpaper.
So that's really the insight.
(35:12):
And the family, the social mediastudy was done by another
master of genetic counsellingstudents, sarah Layton, and that
quote was great because itreally went to show that even
when people weren't in contactwith their outreach family
members often there's oftenchallenging family dynamics and
they maybe don't speak to peopleThey still understood the
importance of the geneticinformation for that relative
(35:36):
that you know.
There was a sense of altruism,despite maybe a breakdown in a
relationship that they werestill willing to tell someone.
And social media in this studywas demonstrating to be a really
useful way of people, withouthaving to you know kind of
reconnect or have some kind ofyou know, in-depth conversation
(36:00):
with people, they could put theinformation out there to the
at-risk relative.
They could communicate it in away that was enabled them to
maybe protect themselves ifthey're in a challenging
relationship, or but they stilldid it And that quote was a
really good one to kind ofexemplify that.
So, yeah, i love qualitativework.
I actually think it's harderthan quantitative, because the
(36:23):
effort that is required in thepreparing for an interview,
getting that interview scheduleright, doing the interviews they
are exhausting.
You really pour yourself intoit.
You just spend, however long ittakes, absolutely listening to
the participant and respondingto them and gently guiding them,
(36:44):
you know, to get theinformation you need, the data
that you need, and then theanalysis is like never ending.
You could do it forever.
I think you're right.
Yeah, i think peopleunderestimate it.
The qualitative, work.
Matt Burgess (36:56):
It really does sort of.
You know, it's important thatthe researchers are involved and
like it's more subjective inthe fact that sort of their
background and where they'recoming from and their point of
view.
That's all really relevant.
So well, thank you so much,laura.
(37:18):
I've really enjoyed chattingwith you.
Dr Laura Forrest (37:20):
Yeah, thank you, matt, it's been a really
interesting conversation.
Matt Burgess (37:24):
Excellent, okay, well, i'll let you go.
Have fun with Alfie and we'lltalk to you later.
Dr Laura Forrest (37:32):
Thanks, matt.
I'm looking forward to catchingup with you soon.
Matt Burgess (37:35):
Okay, bye, bye, bye.
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