Demystifying Genetics with Matt Burgess

This is the first podcast in a series called Demystifying Genetics where I, Matt Burgess, Genetic Counsellor am interviewed by my partner Daniel Goodfellow. Podcasts to follow will have me interviewing genetic counsellors and others working in or involved with genetics. 

Transcript

Daniel Goodfellow (00:00):

Well, hello there and welcome to a podcast that we've given this morning, the working title of Demystifying Genetics. I think, uh, over time that may evolve and I'm sure there'll be lots of different things that are discussed and talked about. But I will say this is the one and only episode I think that I will appear. My name's Daniel Goodfellow and I'm here with my partner Matt Burgess, who's a genetic counselor that's been working in Australia now for many years. And so what we thought we would do in this first episode is as a way to meet Matt and to hear more about him this, in this instance, I'm gonna interview you, Matt, and, and, and hear about everything that, that sort of drives you in this world of genetics. Try and maybe explain for people who don't know a lot about genetics, uh, what it is that you do and, and how it works, and some of the big issues that are now being talked about in this massively growing area of medicine. And then after today, I think you are gonna take the reins and, um, interview guests, talk about specific, um, you know, genetic conditions, talk about issues in the field of genetics. And I will exit stage left, I promise, but, but just for the sake of getting to know you, here we are. It's you and I. Matt, welcome to your own podcast.

Matt Burgess (01:09):

Excellent. Uh, thank you very much, <laugh>.

Daniel Goodfellow (01:12):

So I, I guess let's start with, with the most basic question there is, which is when people talk about this, this thing of genetic medicine or this emerging field, what are they talking about?

Matt Burgess (01:25):

Okay, big question to start with. Mm-hmm. Uh, I think that genetics has been around for a long time, but it was seen as something that was kind of just off on the side. Um, you know, so when somebody went to hospital or there was a medical issue a lot of the time, you know, whether it was in neurology or cardiology, genetics was kind of something that was kind of not seen as important. Whereas as time has gone on, uh, genetics is becoming more and more, um, integrated into every area of medicine. So whether it's sort of infectious diseases or, um, you know, neurology or psychiatry or, you know, so many different areas of, um, medicine is now having a genetics in, um, like input.

Daniel Goodfellow (02:10):

Yeah. Was there ever a time, you know, given the way that medicine tends to, to kind of evolve when new areas are discovered, was there any ever a time when genetics was seen as kind of, um, a bit fringy? Like, like people were dubious about it?

Matt Burgess (02:25):

Yeah, definitely. Yeah. Um, yes. Uh, like sort of an example that's coming to mind is I do a lot of work with cancer and cancer that runs in the family and cancer genetics. And I think in the past it, when people were diagnosed with cancer, genetics was kind of one of the last things that you'd think about. You know, like you'd have surgery and you'd have treatment and, um, genetics was kind of something that, you know, maybe you would do sort of down the track. Whereas now, uh, we know that some of the medicine people have, um, can change according to their genetic makeup. So now, like it wasn't that long ago that genetics was sort of put off on the side mm-hmm. <affirmative>, and now, you know, the oncologist would say, we need an urgent genetics appointment.

Daniel Goodfellow (03:13):

Yeah. It's interesting. You, you, you can't, you probably these days can't pick up a newspaper without there being some sort of, well, there's always an article about genetics somewhere in the paper, but, but interestingly, a lot of people are starting to posit that genetics may end up being most of the ballgame when it comes to medicine. That, that, you know, it, it may end up being an absolutely dominant kind of part of the way that we, we think about medicine. Do you, do you think that's a, maybe is that already happening, but do you see, you know, 10, 15 years time that that, you know, it'll be absolutely central to just about every medical conversation that we have?

Matt Burgess (03:52):

I think so. Um, obviously I work in genetics, so I think that, you know, I'm very close to the, the subject, but I do think that it's becoming more and more sort of prevalent in everyday kind of medical conversations. Um, but I think just in general, genetics is becoming more and more prevalent. Like so, you know, with the popularity of TV shows, like, you know, I'm addicted to the Good wife at the moment, <laugh>, and they're always talking about, um, you know, the forensic evidence and who's done the dna. And what about the paternity test? So sort of in mainstream culture genetics is there, um, I know that there's been some controversy sort of the last, um, couple of weeks, especially in America with ancestry testing. Yep. And so, you know, the ancestry test, it is based on science, but you know, like it's not a medical test, but it's a fun test and it's interesting and what some of the companies are doing is taking that, um, genetic information or your genetic code and saying that they can run a medical test, um, on that information. And there's been a few cases where they've got it wrong, right. They've dramatically got it wrong. Yeah.

Daniel Goodfellow (05:03):

It's interesting, I cuz I've had a number of friends who have had, um, they've sort of gone down the rabbit warren of particularly ancestry testing. So it's funny, it seems to be something that, that there's a particular type of person who finds themselves really interested in this, but I've known a couple of people who have gone really far into it and actually done multiple tests with different companies and they've gotten very different results. Um, which I, I guess in some ways is problematic for the credibility of testing generally. What, what's your view on that? Is it, is it reliable?

Matt Burgess (05:37):

I think that with a medical grade test, like if you are worried that somebody has cystic fibrosis, for example, and you sent a sample of their DNA to many medical labs all around the world, they really should come back with the same answer. Right. Um, you know, like it's not a hundred percent, you know, and maybe, um, some mistakes can happen, which is very, very, very rare. But yes, it really should be the same result out of any medical sort of grade lab. Yeah. Whereas with ancestry testing, it's not the same sort of, um, level of correctness or reliability. And it's not that necessarily the companies are doing something incorrect. They, they're using the same data, but they're just, um, you know, um, interpreting it differently to

Daniel Goodfellow (06:26):

Arrive at a different result. Yes. Yeah. So let's do this. We've got 10 or 15 minutes together now, and, and there's, there's a couple of things I'd love to talk about, but the first thing that we should talk about is you and, and you know, tell us about the work that you do now. Tell us about how you got there and, and, you know, what was it that kind of attracted you to what is frankly a, a really unusual or, or, you know, a career that you don't come across that that often?

Matt Burgess (06:53):

Yes. Um, so I think growing up, um, my dad was a biology teacher and as I was sort of growing up when I was little, I used to think that I didn't like biology. And I used to sneak into dad's studies sometimes and open the textbooks and I thought that they were gross and disgusting. So as a little one, I used to say to myself, oh, I don't like biology. And I didn't really know what I was thinking. And it wasn't until I sort of actually started science in, in high school that I thought, oh wow, I actually do like biology. Yeah. And I remember in year nine we started genetics and I loved it. I just thought, oh wow. Here is a section of, um, of a study that I, I really enjoy. And I used to go around, um, you know, drawing these things called Punnett squares to work out, you know, the, um, you know, the chants of someone having something.

(07:47):

And then the following year, my science teacher actually left teaching to do genetic counseling, and that's how I found out about genetic counseling. So I was only 15 and I was in year 10 at school. And I think like a lot of kids, I sort of changed my mind and like what I wanted to do when I grew up and I kind of thought I always wanted to do something in Allied health. Um, but, you know, I was thinking of becoming a pharmacist and a speech pathologist and so, but all sort of health related. Um, but after a number of years and a number of different studies like courses and different unis, I sort of, you know, finished undergrad and got into genetic counseling and, um, yeah. That's, that's

Daniel Goodfellow (08:33):

The rest is history. Yeah. So tell us what a genetic counselor does.

Matt Burgess (08:38):

So we are allied health workers. Um, we have postgraduate training in genetics and counseling and, um, we talk to people about genetics. So usually we work in big hospitals with other genetic counselors and maybe, you know, there's a team with clinical geneticists, which are a type of doctor that has specialized in genetic conditions or, or neurologists or medical oncologists. And our job is to help people, um, work out the answer to genetic questions. So whether, um, people have a family history of something and they're worried that maybe they will develop the condition themselves or, um, whether people are at risk of having children that are affected, our job is to try and work out the risk and, and to see whether there's an appropriate genetic tests, um, and to organize that test and explain the results. Yeah.

Daniel Goodfellow (09:34):

And one of the things that I've always found fascinating in, in hearing, you know, that what can happen in your average day is, is some of those very complex, the, the more sort of human side of the decision making around this. And you know, the example I often give to people is, is the, an example of identical twins who might have a gen an inherited genetic condition of some sort, where one of them wants to know Right. Whether they do and one of them doesn't. And to me it's a sort of an easy way into what is a is a really difficult ethical question because as I understand the results will be true for both of them. And so your, one of the jobs that you do is to try and help families navigate through some of these what can be really difficult decisions that carry enormous emotional, you know, strain on people. I mean, it, it, it's a very interesting area of medicine because it combines science with that, that very human kind of element around health decision making.

Matt Burgess (10:31):

Yeah, I think it's fascinating. I love it. And I think that, you know, like every area of medicine it has evolved from a certain aspect and in genetics it has evolved from the eugenics movement from World War ii. Right. Um, so, which is really, you know, it's science, but it's history and, um, so in genetics we're always really concerned not to tell people what to do. Right. Um, which on one hand you kind of think, oh, you know, that sounds good. Yeah. Um, but on the other, you know, when something's wrong medically and you go to see a doctor, sometimes you just wanna be told what to do. Yeah. Um, so if, you know, I mean, they're sort of cliches, but if you go and see a surgeon, you, um, you generally don't get that much time, um, with a surgeon and they will tell you exactly what they think you should do.

(11:23):

Yeah. And you know, like, um, I know I, I had a, a patient where she was upset because she had only 10 or 15 minutes with her breast surgeon to talk about, um, issues after I had spent about an hour with her. Yeah. And I got a letter back from the breast surgeon saying that, um, she had a very in depth conversation with the patient. Yeah. Um, so from the surgeon's point of view, she thought that she was having a, a detailed and sort of long conversation. Yeah. Um, but yes, from a genetics point of view, we do like to talk Yeah. And we like to go through issues. And so the genetic test often is quite straightforward, but the implications are massive. Yeah. And unlike other parts of medicine where we do a test and it really is only sort of relevant for the person in front of us, um, genetics has the potential to be relevant, not just for our patient in front of us, but for the rest of their family.

Daniel Goodfellow (12:19):

Yeah. It's interesting, I remember you saying to me that, um, one of a common question that comes up and I I've had, I've asked this question of doctors and other people before is, is, um, you know, if you were me, what would you do? And I remember you saying to me that usually what that tells you is that they hope they don't have enough information to make the decision. And, and that to me kind of frames that in in a really interesting way. Yeah. Because I think we all ask that question from time to time, but of course you're absolutely right. It's a question that we should be answering for ourselves based on all the facts and all of the options and considerations, you know, and so I can imagine that does take an hour sometimes, not six minutes in a gp, you know?

Matt Burgess (12:58):

Yeah. And, you know, these were sort of, you know, we had ethical debates at uni and sort of, you know, like big, um, long lectures about different sort of emotions and how would you handle this and that. And um, yeah. So I think a lot of the times when people say, oh, what would you do? Mm. I hear them saying, I don't have enough information to answer this question. Yeah. And it sort of depends on how much rapport I've built with the patient and um, or the client. And, you know, if I'm close to the client, you know, sometimes I might say something like, well, I'm a a 38 year old, um, guy without any children living with my partner in Melbourne. What I would do in this situation is completely different Yeah. As a 58 year old with children and grandchildren Yeah, of course. Who is a female. Yep. Um, so what I would do isn't necessarily that helpful. Yeah. Um, but if I explain, oh, okay, well this is why I would do it, um, and then sort of move the direction of the question back to my client and help sort of go through it, um, sometimes that can help people make decisions. Yeah.

Daniel Goodfellow (14:07):

So tell us about the work that you're doing at the moment. So you're, you are four days a week at a major hospital in Melbourne in a, in a, I guess most genetic counselors would work in a similar sort of scenario, but that's not all you do.

Matt Burgess (14:20):

Yeah. So I have a private practice. Uh, it's really interesting how I've sort of evolved. Like I remember when I finished uni and I started working, I, you know, I was such a public health advocate and I wasn't really that interested in research. Like I, I just kind of wanted to get into clinical work, get a job, and, and yeah, I, I think, you know, after 15 years, it's just interesting how I can see that I've changed. But yes, I work, uh, four days a week in a major public hospital. Um, but I've started a private practice and so that's really exciting. Um, I just think a lot of the times at work, um, in the public sector, people call up and they say, um, you know, they want an appointment much quicker than what we can offer them. So sometimes, um, you know, our waiting time, maybe four months. Um, and I think as you know, time goes on or the generations are changing, you know, we've got the internet in our pockets, we're used to getting information really quickly. Yeah. I think, you know, with previous generations, if a doctor says, um, you know, we'll see you in three months, you kind of just, yeah,

Daniel Goodfellow (15:34):

Okay. Yeah,

Matt Burgess (15:35):

Yeah. You don't question it. Yeah. Whereas, you know, people are finding out that potentially they're at risk of things and then they call their public health, um, you know, their local genetics unit and find out that yes, they can be seen. Um, and yes, it's bulk billed, but the next available appointments in six months time. Yeah. So I think like many areas of, uh, private health, um, there's a, a section of the community that would prefer to be seen out of hours and would, um, prefer to be seen much quicker and they're happy to pay for that.

Daniel Goodfellow (16:08):

Yeah. So I wanna, I wanna just ask a couple of questions of that are particularly interesting to me, and then I think maybe we'll finish with a bit of a preview on what people can expect out of this podcast. But, you know, one of the things that is a bit inescapable about, about genetics in general, and it's, it's sort of, um, it's rapid, um, advances, right? And, and, and there's obviously a lot of eyes on it is do you ever worry about some of the broader sort of ethical impacts that our discovery of genetic science may ultimately lead to? You know, and I'm talking here about obviously the ability to, to really finely tune a baby that we might be having it, you know, I'm talking about gene editing, I'm talking about the almost total predictability potentially of somebody's sort of life based on, uh, a deep understanding of their genome. D does, do you ever sort of find yourself sort of navel gazing a little bit and thinking, where might all of this lead us?

Matt Burgess (17:08):

Yeah, definitely. Uh, in our training, so our training to become genetic counselors, we speak a lot about ethics and the training to be clinical geneticists. So the doctors that specialize in genetics, they also do, um, a lot of, um, sort of ethical questions. Yeah. And, um, so I think that was fascinating. But when I finished uni, um, the amount of time that we devoted to ethics, it kind of felt like we would be dealing with ethical challenges every week. And that's just not the case. Right. Um, and one of my colleagues actually, um, professor Martin de had a genetic counseling student and her, um, project in her master's course was to look at ethical cases and how often, um, in clinical genetic services we come across ethical issues. Yeah. Um, and what she found was on average it was, I think it was like about two point something cases a year. Yeah. So it is not something that happens all the time, but you know, like we go through consent forms and one of the, the things on our consent form for people having a genetic test is that this test may reveal non-paternity or non maternity. So that's kind of one thing that genetics can kind of throw up. So I think as

Daniel Goodfellow (18:27):

A, sorry, as in it may reveal that your mother or father is not who you think they are. Yes. Wow.

Matt Burgess (18:32):

Yeah. So,

Daniel Goodfellow (18:35):

And so what happens when, when you pass that form over the table to someone? Cuz I would imagine there are people who, who would sign that without hesitation because they have zero. In no way could they possibly imagine that, that this is them. Yes. But I'm sure there's a percentage of the population who in the deep recesses of their mind think, oh, you never know. Yes. And

Matt Burgess (18:59):

The other thing is like, I mean, that's true, but the other case of non maternity or non-paternity is children being swapped at birth. Yeah. Right. So, you know, it could be an accident and not necessarily, um, and that

Daniel Goodfellow (19:10):

Actually happens. Like that's not just a Hollywood, well,

Matt Burgess (19:13):

I don't think it happens. No, it doesn't happen very often, <laugh> like, it, it's not something that happens often, but it definitely does

Daniel Goodfellow (19:19):

Happen. Yeah. Wow.

Matt Burgess (19:20):

Um, you know, this is, this is not something that happens a lot. Yeah. But it's stuff that we're, we are trained in. And I think, you know, the one case every couple of years where maybe mum is worried about the p um, the paternity of her child, um, usually she will pull us aside after the appointment Yeah. Or will give us a call and say, Hey, you know, maybe this is an issue. Yeah. And most of the time we can respect people's confidentiality and it doesn't really have an impact on, um,

Daniel Goodfellow (19:55):

The broader clinical objective that you've got. Yeah. Yes. Right.

Matt Burgess (19:58):

Um, I mean, there are some rare cases where, you know, maybe something needs to be disclosed, but yeah, this is not something that happens, um, commonly. Yeah. But to sort of answer the other part of your question, I think that genetic medicine is becoming more and more, um, you know, vast and they can answer more questions and yeah. It is evolving and what we can do with the technology is getting greater and greater. And most people, um, you know, all of the research that we do usually has to be approved by a research, um, committee or ethics committee. Yep. Um, which is sort of based in hospitals and universities and most parts of the world, um, you know, when we are doing, uh, research that's ethical. Yep. So I think that there is the potential, um, for, for lots of different things. Um, but there's a lot of sort of safeguards put in place.

Daniel Goodfellow (20:59):

Yeah. So, and, and you, you know, obviously I, I sort of scratched the surface on this one in, in a very undergraduate way as, as somebody who is not in any way a scientist, but I think one of your, your hopes for this podcast is that, you know, some of these kind of really future looking issues can be explored with the right guest, um, along the way. So why don't you give us a sense of, of how you see this podcast and you know, what, what sorts of conversations you're planning to have.

Matt Burgess (21:26):

Well, I feel really nerdy. Um, and, but I just like talking about genetics and I think that, you know, sort of when I go to dinner parties or, you know, I go to a party and someone asks, oh, you know, oh, Matt, what do you do? And when I start talking about genetics, usually people are interested Yeah. And they kind of ask me questions. Um, so I'm passionate about genetics and genetic counseling, and I thought, wouldn't it be interested, interesting just to talk about this. Uh, I have some beautiful colleagues from all over the world, and even though we're all genetic counselors or we all work in sort of different areas of genetics, um, people have amazing, interesting cases and are working on fascinating research. So I think with each guest, I'd really like to just sit down with them and find out what they're interested in, in genetics and, um, yeah, what makes them, um, get up and go to work every day and what they're passionate about. And,

Daniel Goodfellow (22:27):

And hopefully along the way you'll be talking about some conditions and, and helping people who might have in the back of their mind a question, um, to kind of get, I guess just a bit of a bit of the background on stuff in, in a way that, you know, doesn't require them to go and have an appointment, but can at least, you know, maybe answer some questions that people might have. And yes, along the

Matt Burgess (22:46):

Way, I mean, at work we get lots of, um, referrals each day. And although, you know, obviously we don't hope that people are sick or people have conditions, but there are, um, different conditions that come across our desk that, um, maybe one person will find more interesting or Yeah. Um, than one of our colleagues. So I'd really like, um, with each person that I, um, interview on this podcast to talk about, um, a condition that they're interested in or they're passionate about. Um, and just to, to get a bit more information.

Daniel Goodfellow (23:18):

Mm-hmm. And I guess the final thing I, I would say, and then, and then we probably wrap this first conversation, but, um, you know, I'm often with you at those dinner parties, that's a, a pretty common thing. And, and the, the thing that I find so interesting is that there is almost never a person around the table who doesn't have some sort of question and that that's about them. And that might be my, you know, I, I wonder if I have a family history of, or I wanna know more about those ancestry tests, or I've heard about this 20 23andme company. And I think the, the, the thing that we should say, and you, you know, I imagine you'll probably say this at the end of every one of these, is that if anybody has a question, then you know your phone number's on your website and people can call up and have a chat because, and that's a rare thing because you know, in the most, in the most, um, sort of common scenario in Australia right now, and probably in other countries around the world, people need to visit their doctor and then get referred on your business is quite different in that it's a private service that anyone can call up and say, Hey, I'd like to start a conversation about whatever it is that's pertinent to them.

(24:25):

So I'm hoping, and, and I'll be, I promise lobbing from the peanut gallery as I listen to these, these podcasts, but I'm hoping that it does, uh, provide people with a, I guess an entry point, um, if some of these conversations, um, you know, bring up questions that they have so, you know, we'll make sure that's on the, on the site or on somewhere. And otherwise your website's, your website.

Matt Burgess (24:46):

Yeah. I think what I'll do is, um, at the end of every podcast, I'm gonna have a fact sheet, um, so it will have the topics that were covered and some links to good websites about information, um, so people can get more information about a particular, um, topic that's covered. But yeah, you're exactly right. Um, I'm happy to see people in Melbourne in person or via Skype or FaceTime for other parts of Australia. And yeah, very happy to answer questions and potentially organize tests and explain results and yeah, conduct genetic counseling.

Daniel Goodfellow (25:21):

Beautiful. Well, Matt Burgess, it's been my, my great pleasure to be a one hit wonder on, on this podcast and interview you in this first instance. But I can, uh, I can assure everybody that you'll be hearing from Matt next time around and you'll be running the show and, uh, in fact, I think you're recording a couple of these today, which will be published over the next month or two. So, um, good luck. I'm looking forward to listening to it, and, uh, hopefully others are too.

Matt Burgess (25:44):

Thanks, Danny.

Daniel Goodfellow (25:45):

Great.