Demystifying Genetics with Alison McEwen

Experience the gratifying journey of Dr. Alison McEwen, a pioneer in genetic counseling, and the current president of the Human Genetics Society of Australasia. Embark with us as we traverse Alison's path of setting up the UTS Genetic Counseling course, her innovative philosophy of creating 'brave spaces' that inspire students to push their boundaries, and her dedication towards a client-centered approach in healthcare.

Dr. McEwen also takes us through her riveting PhD journey focused on familial cancer, the heart of her research, and her implementation of a philosophy of practice in genetic counseling. Gain insights into her work at the Human Genetics Society of Australasia and her reflections on the World Congress of Genetic Counseling. This episode is a must for anyone intrigued by genetic counseling and the enriching challenges of establishing a course in the field. So, get ready to be enlightened, entertained and left craving for more. It's time to peek behind the curtain of genetic counseling with Dr. Alison McEwen!

https://profiles.uts.edu.au/Alison.McEwen

Chapters

• 0:00 Founding a Genetic Counseling Course
• 11:09 PhD Experiences in Genetic Counseling
• 21:37 TrackGene, Leadership, and Genetic Counseling

Transcript

Matt Burgess: 0:00

G'day. My name is Matt Burgess and I'm a genetic counselor, and this is my podcast, the Mystifying Genetics. Today, in the studio, I am chatting with genetic counselor Dr Alison McEwen. She is a genetic counselor, an academic and the current president of the Human Genetics Society of Australasia. We talk about her research interests, including the online education of genetic counselors and some of her published articles. Hello, alison, and welcome to the Mystifying Genetics.

Alison McEwen: 0:36

I'm Matt. It's nice to see you after all these years.

Matt Burgess: 0:40

I know Thank you for coming on. So I think last time we spoke you lived in Sydney, but now you live back in New. Zealand. I must admit I absolutely love New Zealand. It did take me quite a while to get there. I didn't go until I was in my 30s, but yeah, I love it. Whereabouts do you live?

Alison McEwen: 1:03

So I live on the Capiti Coast, which is about 45 minutes north of Wellington and it's on the west coast of the North Island, so we get fabulous, fabulous sunsets. So I live in a kind of beach suburb and we've got enough land to grow a lot of our vegetables. We've got chickens and beehives and, of course, our dog, who I've been out with this morning.

Matt Burgess: 1:38

So yeah, oh, lovely Is that, rosie.

Alison McEwen: 1:42

Yeah, that's Rosie Yep.

Matt Burgess: 1:45

It's funny because I kind of had this impression of you living this idyllic life on a farm with the animals, being able to work remotely but then live this amazing life. So I'm glad that my idea was probably it sounds like that's how you're living in real life.

Alison McEwen: 2:07

Yeah, yeah, I mean I really value the opportunity to work remotely in this way because, you know, our families are in Aotearoa, new Zealand, and our parents aren't getting any younger. So it's really important for us, particularly when the pandemic came, that we were close to them, to be able to provide support for parents and for our children who are in their late 20s now, yeah, and I think I mean you know, so I really value that. I think you know idyllic life is perhaps an overestimation. There's a lot of work involved growing food and that kind of thing but I think having that opportunity to ground myself absolutely literally in the soil and the earth is it keeps me in a good place to be able to do the work that I'm involved in.

Matt Burgess: 3:14

Fantastic, it sounds amazing. I would love to come and visit and, you know, have a glass of wine and enjoy ourselves Totally sure. Now what I'm about to say. Maybe it's a little bit cheeky, but I feel like the genetic counselling course that you studied probably wasn't the best genetic counselling course around, but then you went on and founded one of the best genetic counselling course in the world. I think how important was it for you to set up a really sort of robust and rigorous genetic counselling course.

Alison McEwen: 3:53

It was incredibly important and I guess I think you know.

Alison McEwen: 3:58

For me, everything, all of the work, comes back to our clients. It comes back to the individuals and families with inherited conditions, and whatever role a genetic counsellor goes into whether it's in a laboratory or in a research role, in a policy role or in a clinical role I feel like everything comes back to those people who are the end users of the work that we do. And so, for me, the heart of genetic counselling is around how we can connect and engage with people, how we can communicate with them and support them through a moment in their lives. And I hope that through the program at UTS, we're equipping students to deliver really strongly evidence-based healthcare with the emphasis on care. And I think it's interesting because, you know, the training has evolved so much over the years and you and I, you know, have come through that time of evolution of training in Australasia and I think it was really important that we started somewhere and that we moved towards where we wanted to be. You know you need a foundation or a jumping off point to grow from.

Matt Burgess: 5:37

Right. I think one of the things I really admire about you is how important that evidence base is to you. I see that you conduct research, you put a lot of thought and effort into it and then you publish it. I think that it's really important to actually have it in the literature and talk about it, so it becomes part of the culture. I think that that's something that you do really well.

Alison McEwen: 6:09

Wow, thank you.

Matt Burgess: 6:11

So in founding and I guess an example of that is when you were founding the UTS Genetic Counseling course, so, University of Technology Sydney, a few years ago you conducted some research about the genetic counseling needs in Australasia and how to provide a course online and just logistics and what was needed. Was that a difficult process to go through?

Alison McEwen: 6:41

I guess when I went into that role a few years ago I spoke at the World Congress of Genetic Counseling and I talked about this concept of brave spaces. I guess for a long time in education we've thought about the idea of a safe space for students. There's some literature that suggests that actually students will learn more in a brave space. A brave space is where we want our students to have a starting point and to challenge themselves with ideas or with their skill development so that they are supported to do that. But also they have to step out of their comfort zone and into a space where they test what they're capable of doing.

Alison McEwen: 7:44

I feel like for me, going to UTS to establish the program that was my brave space. I stepped right outside my comfort zone. I spent a long time with that, the idea that I had to be the change that I wanted to see in the profession, and I had the mantra of fake it till you make it. We get those ideas of a dark or a swan gliding along the top of the water and, of course, under the water our feet are furiously paddling and that's what it felt like with going to UTS to establish the discipline and the program In that time, when I first got there and it was just me, I was the team for six months I had to think about where do I start and for me everything comes back to collaboration and to communication and to making those connections that have enabled the discipline, the team, the program to develop and the way it has.

Alison McEwen: 9:01

I wanted to bring people from the profession on the journey. I went out and I asked people what do you think should be in the training? It was kind of a loosely co-design process. It wasn't really research. It was a whole series of conversations that we then wrote about. From that point, once my head was around what this was going to look like, we started to do research. That provides the evidence for the way that we're teaching and some of the learning activities.

Matt Burgess: 9:45

Right, I was so glad that you shared your experience of setting that course up and I guess I never assumed that it was easy, but I think that you did make it look easy.

Matt Burgess: 9:54

So I feel like you were that swan from an outsider perspective blinding along, even though you were frantically sort of, you know, working in the background there. But I've copied a line from one of your articles about setting it up. I really like it and so, just quoting here equipping students with open eyes and listening ears may be the single most important thing we can do to prepare the genetic counseling workforce of the future, to provide the best possible care. And, you know, as an academic qualification at a, you know, a well respected university, you know, and something as sort of modern as genetic counseling. Sometimes I, you know, I worry that it's really complicated and it's hard, and you know it's complex. But you sort of brought it back down to the real sort of essence of genetic counseling, you know, open eyes and listening ears, and I think that that's such a good sort of summary or like a good sort of foundation for your students to have.

Alison McEwen: 10:58

Yeah, absolutely. I think listening is perhaps the most important thing that we have to learn to do as genetic counselors.

Matt Burgess: 11:07

Great. Another thing that I sort of wanted to talk to you about and you know, maybe it was probably, you know, a better thing to do over a cup of coffee sometime, but I never actually got a chance to. So, hey, I'll just ask you on my podcast. But I wanted to talk to you about your PhD and I know when we were preparing for, you know, this chat, you said no, I've got many more, much more relevant things to talk about than my PhD, so I won't harp on about it. But I don't know how or why I had this impression, like I remember you sort of presenting about your PhD, you know, back in the day, and talking about it, and I always got the impression that it was a very isolated thing. So you were doing your PhD at a university where there wasn't a discipline of genetic counseling and I think maybe I was just daydreaming like, oh, alison, she was by herself, she was the only genetic counselor. Like, was that your experience or did I just make up a whole story in my mind?

Alison McEwen: 12:11

No, you didn't make up a whole story in your mind. I guess my PhD was perhaps the best accidental thing that ever happened in my career. So I was working as a clinical genetic counselor and I was working I mean, my children were kind of late primary school age at the time and I was working with a gynecological oncologist in a shared clinical environment and he had been collecting this cohort of a list, basically, of women who were at increased risk of ovarian cancer and we put in an application for some funding from a philanthropic organization to interview these women. And we were successful in that application. And somebody said to me well, if you're going to do this, you should do it properly. You should enroll in research masters and get and learn some research skills so that you can then take this research forward. And so I thought, oh well, okay then. So I enrolled in the research masters, we started to do this work and we got so much data, so much rich, wonderful story from these women that my supervisors said to me I think you should see if let's put in an application and convert this to a PhD. I said, oh well, okay, and so, yeah.

Alison McEwen: 13:47

So my PhD was sitting in health sciences faculty, at Otago University, I had a supervisor who was in Dunedin, where the university is, and a supervisor who was at a different university but in Wellington where I was. So I had this really wonderful, full of hard work but wonderful five years where I was doing a PhD part time. I was working in a clinical role, kind of four days a week, and so I was really immersed in this infamilial cancer in two ways and I just loved that experience and the PhD came out at the end of it. And then, and that you know, I thought, well, that will be the end of it, I'll carry on doing some clinical work going forward, I'd already I've always had that interest in education and so I've been involved in training and certification guidelines and things in Australasia. And and then it was as though everything coalesced when UTS was looking to start a program.

Matt Burgess: 15:09

Wow, it must have. It sounds like a really busy time for you. You know, doing all of that with school-aged children as well. Ah, yes, it was.

Alison McEwen: 15:21

One of those things when you look back and you go. How did I do that?

Matt Burgess: 15:26

And because I, like you, know one of the themes that came out of that. You were looking at a cohort of women and I think the idea was that they just get on with it. You know they'd live with like this, you know strong family history or this risk of cancer, but they get on with it. And I did sort of think about, you know, if it was the opposite, like if you're looking at a group of men that were living with an increased risk, would they just get on with it or would they sort of make a big drama out of it? Or you know, I think it was interesting how, yeah, it was sort of focusing on the women and that's what came out of it.

Alison McEwen: 16:06

Yeah, and I think I mean what I explored was whether that's a cultural way of doing things like, whether that's a way of being that's common in New Zealand. And I suspect that actually, men in New Zealand would mostly just get on with it as well, that if they explored the fact that they had an increased risk, that then they would just also get on with things, and not everybody. But that was a really. It was really striking how many of the women used that phrase during their interviews. You know, yeah, beautiful.

Matt Burgess: 16:50

I just, yeah, I love that about the qualitative research you know, picking up on phrases and themes and exploring that. So yeah, great work. Another piece of great work that you've done, oh, it's something that I hadn't really sort of come across before, but it was a philosophy of practice. And you know, my undergrad is in psychology and I didn't do a lot of philosophy but I really sort of do like a philosophical sort of exploration, I suppose. So when I found out that there was this thing called philosophy of practice and that you and Chris wrote a paper about that in relation to genetic counseling in Australasia, I thought, wow, this is amazing. So can you tell us a little bit more about what a philosophy of practice is and how you included it into the master's course?

Alison McEwen: 17:48

Yeah, absolutely so. Chris Jacobs was the second person to join the team at UTS Genetic Counseling and so we worked very closely for several years as we developed the program, and now Chris has returned to the UK and is working in a university in Surrey and going to be establishing some training there, and I expect that she will use this idea of a philosophy of practice and bring it into the UK as well. So it's been common for quite a long time for in teaching, for example, to write a philosophy of teaching practice, and it's something that universities often will encourage academics to do to think about the how and the why of what we're doing and what values we bring to that, and so we thought it would be really interesting to get students to think about well, what are all the different values in genetic counseling and what do those look like in practice? And actually, what do I look like as a genetic counselor, what's my identity and how do I want to practice? So we're getting at all of these different ideas of when I go out into the workforce, who am I in that space, and I think it's interesting.

Alison McEwen: 19:30

We have very, really thought-provoking discussions with students as they grapple with these ideas and they often say, well, it's too early, I can't write this philosophy of practice and we talk about. Well, actually, this is about thinking forward, about what are the values that really that I bring from my previous experience as a person in this world and how do I want to take those into this profession. So it's part of developing our identity as a genetic counselor and thinking about you know, who are the genetic counsellors that I really look to as examples of the way that I want to be and what do I see in them. And I think it also gives students the opportunity to really pull apart some of those ideas that kind of seem to hang on in genetic counselling, like whether we can be directive or non-directive, for example.

Alison McEwen: 20:50

And yeah, so it's a. We just encourage them to. Well, they have to. It's an assessment task at the end of their first year To start to think about who am I becoming as a genetic counsellor and why am I becoming that way. And then, more recently, the Human Genetic Society of Australasia Board of Senses for genetic counselling has hooked this up in the reflective essay that genetic counsellors write as part of their certification and asking people to start to think about you know, why am I doing things the way that I'm doing them?

Matt Burgess: 21:37

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Matt Burgess: 22:24

That's T-R-A-K-G-E-N-Ecom. You know, one of the things that I love about genetic counseling is that we are so lucky that we have supervision and it's really encouraged and kind of mandated. And you know, like, when I think of my own journey when I finished grad school for genetic counseling, I did feel ready and I was confident and I went out there. But you know, I know that I changed and I evolved and I developed. I think that it's really lovely that maybe the students are saying, oh, I'm not ready to write this or I don't know how to, and it's like, well, that's okay, you can write it now and then. You know that's not set in stone, you know you can reflect on that and come back to it as you sort of progress in your career.

Alison McEwen: 23:14

Absolutely.

Matt Burgess: 23:16

So another thing that keeps you busy is that you're actually the current president of the Human Genetic Society of Australasia. You are a genetic counselor. Obviously we haven't had many genetic counselors as presidents, and just wondering how that experience has been for you.

Alison McEwen: 23:34

Yeah, so I'm the second genetic counselor to be the president of the Human Genetic Society of Australasia. The first was Mary Ann Young and she was the president when our society was maybe around 40 years old and now we're 46 years old this year. So it's taken us a long time to get genetic counselors into these positions of, I guess, senior leadership across the disciplines of human genetics in Australasia, and I think that that's probably been similar in Europe and the UK that these combined societies have. Perhaps early in there, in the kind of formation and in the early years of the societies, it's tended to be the scientists and the medical geneticists who've taken these roles. So I felt really excited and I think many people did in the profession when Mary Ann was asked to be the president, and what I think we're demonstrating now is that genetic counselors you know I think there'll be another genetic counselor in a few more years will come into this role. So I think we'll take our turn in the kind of cycling through that that happens in the leadership of these organizations and I guess what it means is that that we have an opportunity to foreground the key issues for genetic counselors and so, and at the same time to think, I guess, across thinking as a genetic counselor and the issues that are in the forefront for us, and what does that mean for our discipline colleagues across the laboratories and the clinical geneticists.

Alison McEwen: 25:54

So so you're probably aware that that the really key issue for genetic counselors in Australia in particular is is around funding for genetic counselor activity, and so we've been doing a lot of work in that space with government to to try and improve the situation, and if we're still it's a work in progress.

Alison McEwen: 26:23

But if we are able to, you know that improved funding for genetic counseling and counselor activity will will have a flow on effect for our colleagues in the labs and and for the geneticists. So all these things are connected. But it's been a real opportunity, I think to well for me to understand how things work across the the all the different disciplines in our society and and then think about how is this all connected? Yeah, so, and I'm coming to the end of my term the 19th of July is the AGM and then I'll step into that ex officio role and have an opportunity to, I guess, continue with some of the projects that have been that I've been heavily involved in. But Nemi Berman will come in as the next president, so we'll be going into a better sister led society.

Matt Burgess: 27:32

Excellent, oh cool. Yeah, I really like that idea of sort of, you know, setting up a precedent that you know it's beneficial for the genetic counselors but then it also helps the other you know, members of the society, and yeah, I think that's a great way to sort of go about it. Now, you mentioned before your involvement with the World Crongrass of genetic counseling. I think they have there been two, and the third one is just about to come up, or I think there's been three, because there was one that was virtual in 2021.

Alison McEwen: 28:10

So I think it's the fourth one is just about to happen.

Matt Burgess: 28:13

Okay, I know I was lucky enough to go to the first one and it was my favorite conference ever. I absolutely loved it. I loved every second it was. It was such an amazing conference. Has that been your experience? Have you really enjoyed this conference?

Alison McEwen: 28:32

Absolutely. So I went to the second one in 2019 and I, you know, I think that that opportunity to stay on a campus, to eat meals together, to have conversations in in so many different ways, and for everybody there to be genetic counselors from all around the world and 28 countries, I think, in 2019.

Matt Burgess: 29:00

So imagine how many countries might be represented in 2023, you know, yeah fantastic and a genetic counselor that is not too far away from me here in New Jersey, new York, is Laura Hershaw and she hosts a great podcast called the Beagle is Landed, and I like what she sort of suggested or said at the at one of these conferences, and she said that or suggested that our profession of genetic counseling has entered adolescents, with the accompanying struggles to articulate a clear and individualized identity that typifies that developmental stage. Is that how you see genetic counseling? Is that sort of the stage that we're in in, especially in Australasia?

Alison McEwen: 29:50

I think I mean that's I'd forgotten about her saying that, but I heard her saying that and that's written in her article in the Journal of Genetic Counseling special issue and and I guess adolescence is really about identity formation and and in some ways, the idea of a philosophy of practice and and where we're at as a profession are connected because they're about how do we form identities and you know, I think one of the things when I was early on in the program development at UTS was really thinking about how how do we think forward into the potential that exists for genetic counselors and how do we think about where genetic counselors might work if we're not already working in that space?

Alison McEwen: 30:51

I think, you know, in 2018, when we were putting the program together, we knew that there were going to that our graduates were very likely to go into roles that didn't exist at that point. So so how do we prepare people to take on those, the challenges of new roles, and and what connects us as genetic counselors, and and so you know it is a messy sort of a time and I guess we're probably still in that time, in that we're seeing genetic counselors moving into these mainstream spaces and thinking about what does it mean to be a genetic counselor in a neurology team? What's my role, how do I, what's my identity, what do I bring to this team and how do I communicate the value that I bring? So to do that, we need to have a robust idea of ourselves as as a profession. I think so. So that's a very long way of saying that. I agree with what Laura said.

Matt Burgess: 32:06

Yeah, I think, practicing in Australia and then coming to the United States and and seeing how things are done over here and sort of comparing and contrasting, I would say, you know, if we're using this analogy, maybe our American or North American colleagues are our older sort of brothers and sisters and maybe we're sort of early adolescents, but it's exciting to kind of see how it's evolving and changing and and what that means for Australasia. And one of your recent publications it was only just recently published was an article that you wrote with a genetic counseling master's student, so it's called Invisibility of LGBTQIA Plus People and Relationships in Healthcare a scoping review with Lucas Mitchell and Chris Jacobs. It just seems like such an important paper for our time now. How has that sort of been received?

Alison McEwen: 33:11

So I guess I mean it's funny with papers, isn't it? Because you do, and I mean that paper took a long time to come together. The scoping review was huge I think 77 articles. So Lucas started that during his master's and for his dissertation he looked specifically at the articles about transgender people and then we went on with the rest of the data that he'd collected to think about the whole review of visibility or invisibility of queer people in healthcare and because there wasn't very much in genetic counseling at the time.

Alison McEwen: 34:07

So in a really nice bit of timing that paper was published during Pride Month in June. So that was really good in terms of pushing that out. And I guess one of the nice things for Lucas was that one of the genetic services in Australia invited him. They had a Pride Journal Club and they invited him to share that work. So I guess we'll have to wait for a year or two and see what happens with that work. But yeah, I think it's a really well. I think it's a good read to think about. What are the issues and how can we be? You know, it's about being client centred, really, isn't it? And about not being token allies but actually being real allies and getting comfortable so that we can be really genuine with our clients in that space.

Matt Burgess: 35:18

Yeah, I think, yeah, being genuine is such an important key. You know, like if we are client centred and we're using active listening, we are able to be authentic in our dealings, and you know, that's what it's all about, that's the lovely thing about it. So Lucas was one of your genetic counselling master's students. Is it important for you as part of the faculty that your students publish at the end of their degree?

Alison McEwen: 35:52

So that's a.

Alison McEwen: 35:54

So I think that that's a really interesting question, and I was.

Alison McEwen: 35:59

So I've been thinking about this a lot because at the moment, students in the Australasian programs have to complete an independent research project, and I had a meeting with Kelly Ormond earlier this morning and we were talking about the fact that it's a little bit different across the programs in the US, that some of the programs in North America the students might not complete a completely independent research project.

Alison McEwen: 36:33

You probably know more about that than me, but I guess I guess if we are producing, if students are doing all of the work to produce an independent research project, then I think it is really important that we publish this work, because otherwise we're contributing to research waste and we're not being respectful of the participants in the studies if we don't go on to publish that work. So it is important and it's also really challenging, because students complete these dissertations and then they're very focused on the need to do the work that's about applying for jobs and starting new jobs, and we know that that can be pretty all consuming, that time of moving from a graduate program into the workforce, and so we don't always publish things. But I think, working with students we've published. Probably well, I haven't got the stats but probably four or five students at least per year are publishing and a couple more students are about to submit their manuscripts.

Matt Burgess: 38:01

So yeah, I think it is important. I agree. I like the idea of reducing research waste. Well, I think that that is a great place to end. So thank you very much for spending this time with me this morning, alison, and thank you, I've really enjoyed it.

Alison McEwen: 38:21

Yeah, I've enjoyed it too. Thanks for creating an environment where I can talk about so many of the things that I'm interested in and excited about.

Matt Burgess: 38:31

You're very welcome. I'll talk to you soon.

Alison McEwen: 38:33

Yeah, see you later. Bye bye.

Matt Burgess: 38:35

Thanks for listening. I just wish I had a little bit more time to talk to Alison about her new dog, ruff Rosie. Oh well, maybe next time. So I'd like to say thank you very much to Dr Alison McEwen for being the guest on today's show, thank you to Track Jean for sponsoring this episode, thank you to my producer, omiya, and thank you to the listeners for tuning in. Thank you.