Prepare to be immersed in the intriguing world of genetic counseling as we navigate its intersection with law, policy, and public health, with our esteemed guest, Julia Mansour. This episode promises to expand your horizons, offering insights into Julia’s career transition from law to genetic counseling, her stance on the controversial position statement from the Human Genetic Society of Australasia, and her unique experiences living in Tasmania.
Our conversation doesn't stop there! Ever wondered how the worlds of public health and law intertwine in real-life scenarios? Enter the realm of petrol sniffing prevention in remote Australia and the fight against Ebola, where Julia’s experiences beautifully demonstrate the power of collaboration across communities, governments, and private entities. Be prepared to question the black and white nature of rules as we explore the ethical challenges of genetic testing. This episode isn't just an interview; it's a journey into the heart of public health, law, and genetic counseling, with lessons and stories that are sure to leave you enriched and enlightened.
Prepare to be immersed in the intriguing world of genetic counseling as we navigate its intersection with law, policy, and public health, with our esteemed guest, Julia Mansour. This episode promises to expand your horizons, offering insights into Julia’s career transition from law to genetic counseling, her stance on the controversial position statement from the Human Genetic Society of Australasia, and her unique experiences living in Tasmania.
Our conversation doesn't stop there! Ever wondered how the worlds of public health and law intertwine in real-life scenarios? Enter the realm of petrol sniffing prevention in remote Australia and the fight against Ebola, where Julia’s experiences beautifully demonstrate the power of collaboration across communities, governments, and private entities. Be prepared to question the black and white nature of rules as we explore the ethical challenges of genetic testing. This episode isn't just an interview; it's a journey into the heart of public health, law, and genetic counseling, with lessons and stories that are sure to leave you enriched and enlightened.
Hello and welcome to Demystify and Genetics. I'm your host, matt Burgess, and on today's show I have with me Julia Mansour, genetic counselor. We talk about policy, we talk about the law, we go into issues regarding public health and public versus private health and how all of that relates to genetic counseling. So enjoy, okay, hello, julia, How's it going? Welcome to Demystify and Genetics.
Julia Mansour:Thank you. Thank you for having me. I'm feeling very unqualified to be here, but I'm honored and excited to talk to you.
Matt Burgess:I look you in very safe hands, so I see pics of you on socials. It looks like you're having a great time in Tasmania. Is that where you are now?
Julia Mansour:Yes, I'm sitting here in Hobart, nipaluna, tasmania, and it's the early morning and as we talk this morning, I'm going to be watching the sunrise through my window, which is one of my favorite things of the day to watch the sunrise and it's gorgeous from here. So, yeah, I am very spoiled. I live in a very beautiful place.
Matt Burgess:Beautiful. You're an early bird like me, by the sounds of it.
Julia Mansour:Yes, I am.
Matt Burgess:And how is life going in Tassie?
Julia Mansour:Yeah, life's great in Tassie. Yeah, I swim many mornings a week like three to four mornings a week and yeah, I've got a very strong affinity with the ocean and the water. So it's a perfect place for me to be on a small island where there's water all around. So, yeah, it's my thing. I have to get in the water almost every day and even if I don't swim properly, I just get in.
Matt Burgess:Good for you, it's awesome, and there's some good wine in Tasmania as well, so that helps.
Julia Mansour:There is definitely good wine. I'm trying to give myself a little rest from the wine at the moment after lots of overindulgence. We had my festival here for the winter solstice just the last couple of weeks and so, yeah, there was a bit of happiness and craziness and partying going on over that time. That's what it's all about, so, yeah.
Matt Burgess:Oh, sounds good. Now, first things first. I would actually like to say thank you. When I was thinking about us talking together, I sort of was reminded about when I first graduated and when I got my first job as a genetic counselor all those years ago, and you were one of the genetic counselors that I sort of hung around with and it wasn't that much, I don't think, but in hindsight I think that it was actually very helpful. Like, I think I was overconfident, I thought I knew it all, I was ready to go, and when I spent time with you, I just think you sort of grounded me a little bit and I think that I was better off for that. So have you been a mentor before, or have you had any mentor training, or is that something that you've sort of been involved with in the past?
Julia Mansour:Haven't officially been a mentor before. I just want to say thank you in response to that. When I think back, I think about early days and I was thinking about the fact that I've known you for quite a long time and from when we were both sort of baby GCs although I think I was only a couple of years ahead of you in terms of my training and when I first was qualified. But I've always loved having that connection with you and meeting up with you at conferences and seeing you around, and I remember when you were living not far away and we could catch up, even socially at times. So, yeah, it's been good, and that's what I love about where I'm at in the profession at the moment is that I've got these long standing professional collegiate relationships and it means a lot because I think as a professional, we've grown through a lot and so as individuals we've grown through a lot in that way as well. So, yeah, I haven't officially done a lot of mentoring I've actually but I love sharing my knowledge and my experience with people. I think in some ways it's kind of all storytelling and it's what our clients and patients do with us as well, and so I sort of love sharing and so I'm happy to do that.
Julia Mansour:I'm always generous in that way and I've benefited from some amazing mentors. I reckon there's people like Jack Goldblatt in Western Australia who was the clinical genesis and director of that service. He's been a lifelong mentor for me, like he, I reckon, has been a referee for almost every job I've been for. You know someone I keep in touch with and you know we stay connected about what's happening in our lives in general. You know and you know people like Joe Burke here in Tasmania, who really gave me a shot when I was coming back into the profession after a break and who's really supported me. You know in many ways so, but I think a lot of it goes both ways, as you kind of have highlighted. Yeah, yeah, that's great.
Matt Burgess:Oh good, I think I really like when we sort of catch up at conferences and, you know, when everybody walks into the room and we see each other for the first time, especially in Australia where there's only, you know, such a limited number of genetic counselors that we kind of squeal because we get so excited. So yeah, I really like that. Oh, so I saw that a few years ago you published a paper you were one of the authors on a paper called Human Genetic Society of Australasia Position Statement Predictive Testing and Symptomatic Genetic Testing in Adults and Children. Now this is a huge topic and I guess sort of the takeaway in the article was unless there's a direct medical benefit, the advice is not to offer testing to children for genetic conditions that affect adults.
Matt Burgess:And you know, as I get older and the more experience I get, I know when I first started as a genetic counselor I thought, okay, that's the rule. It's black and white. The answers. No, we're not going to do testing, that's it. And I guess I just think it's funny that my opinion has changed a little bit and I think that it's not always black and white. And were you able to kind of get some of that nuance into this paper, do you think?
Julia Mansour:I think we did try to do that. I mean, I think, just to give a bit of context to where that paper came from. I sit on the Education, ethics and Social Issues Committee of the Human Genetic Society of Australasia and I was the co-chair of that committee for a couple of years, which is a huge honour and has been an amazing group of people to work with. I love the work that we do. We get to be on the well. We actually have licence. I get to be watching for emerging issues that we feel that our profession and society needs to be aware of and issues that we think we wonder whether there should be a position statement around or a policy or position around.
Julia Mansour:This article actually came from a review of a previous position statement and I think, as you say, it does try to create a space where and we go to some of that in the article creating an understanding about how do you assess someone's competence or decision-making capacity if they don't meet the adult kind of position.
Julia Mansour:So we talk about people who are maybe under 18 or minors and how you would assess whether they are really understanding what they are getting into, and there is a legal framework for that, that's in common law around how you make some of those assessments.
Julia Mansour:So we try to build that in so that it's not a blanket yes or no. And I've certainly clinically been in situations where you've got quite an astute young person in front of you who knows that they want this test and for you to refuse it is one paternalistic, but two potentially damaging to that person who, if they don't get the information that they feel that they need, there could be potential psychological distress to them, like they are in a position where to know is better than not to know, and so who am I to stand in the way of that? But my job is to check out how are they going to manage this information and do they have the maturity and competence to incorporate that and manage that? And I you know it all comes down to duty of care. So that's what we try to build into that statement.
Matt Burgess:Yeah, that is complex and I think you highlighted a lot of the issues there, because we need to be advocates for our clients and we want the best for them and there is a duty of care in our jobs in looking after our clients. But then we need to balance that with that paternalism and I guess it's hard for us to say yes, you can, or no, you can't, and maybe we're not the best people to be making that decision for people. But yeah, I see that it is a complicated, complex issue and I'm glad that you mentioned the legal issue there, because you're a genetic counselor who has actually studied law. So in your background you started as a lab scientist and then you became a genetic counselor. But what took you into studying law?
Julia Mansour:I think probably as we, most of us would have done in our training and I've got to say I changed back in the late 1990s, so it was pretty early days in terms of genetic counseling in Australia. We were, we were alerted to the potential of genetic discrimination as a result of, you know, in terms of things like insurance and jobs and things like that, and I think it was you know, the Gatiga movie came out around that time, maybe a scene after, and so it was sort of something that I thought a lot about and that I was concerned about and wanted to have a better understanding about. So I started law sort of more with the view of getting a better understanding about legal frameworks and wanting to understand what the law was and how it could possibly help people if we were in a situation where, you know, this issue of genetic discrimination really took off and became a really big thing. And so what was interesting when I studied law was I actually was really interested in tort law, which is the law of wrongs, where you have things like issues of negligence and say things like medical negligence comes up in that space and issues around privacy law come up in tort law. So it became kind of it.
Julia Mansour:Through the study my interest broadened and, I guess, became a little more philosophical and theoretical than practical, even though I did go on and do my training to be admitted to the court. So if I decided to go back and get myself a baby lawyer job and practice I could do that. It's very exciting and something I think about doing at times, but it might be like a retirement job.
Matt Burgess:Okay, because I was going to ask you about that. So in the Australian legal context you can do a law degree but then to actually practice you need to go on and do the graduate diploma of law or legal studies. And is that? Sort of similar to like sitting the bar exam or like.
Julia Mansour:Effectively, yes, so it's what gets you on the register as a lawyer in a court or in a Supreme Court. So my arm on the Supreme Court of ACT. But it becomes sort of mutually recognised through the other states and territories. But then to actually practice you need a practicing certificate and to get a practicing certificate you need to work in a legal firm under someone with a practicing certificate. So you need to do a couple of years training in that context before you can get a practicing certificate. So to practice on your own, there's still another couple of steps. But you won't get there if you're not admitted to the court.
Matt Burgess:Okay, and so was there a time where you thought that maybe you would go into full time law, or did you always think, oh no, health is sort of where you wanted to stay?
Julia Mansour:Yeah, actually. So through my graduate diploma of legal practice I actually worked in. I did some of my training in legal aid, which I loved. So I think I've always I'm always going to work in a role that has some sort of community focus to some extent or helping people on that level. Yeah, I loved the work in legal aid and it was really similar to counselling in many ways listening to people and listening to their issues and helping them navigate away forward and giving them options about which way they could go. You know, that's what it's about.
Julia Mansour:So I, when I was making the decision to come back to genetic counselling or I've been working in the Commonwealth government in sort of big policy programme space and wanting to get back into sort of you know, working more with people on an individual level I was equally applying for genetic counselling jobs as legal jobs. So I was kind of thinking I just jumped whichever way came up first. So, yeah, I'm pretty happy with where I landed. I'm very happy with where I landed. But yeah, I did go through a phase at that point where I thought maybe this is the time.
Matt Burgess:Okay, and was that sort of like a fatalistic thing, like did you put your, your fate in the hands of Mother Nature, or like you were just hoping the universe would guide you, or yeah, thank you, Lee.
Julia Mansour:Like I kind of was just applying for things you know all different types of things and I was going to go with, yeah, the thing that made the most sense, and that's something I've done since I made my baby. So I made decisions based on what feels right and it works for me.
Matt Burgess:Yeah, oh, that's beautiful, oh good and it's great, because I can see a big smile on your face while you say that. Do you run a small private genetic practice? Do you need to draw pedigrees and save them from your patients and store their data? Well, trackgene may be able to help you with this. Trackgene is used by hospitals, genetics clinics and private practices all over the world. They have genetic counselors on staff, so the program and how it functions has clinician input at every step. For more information or to book a demonstration, go to trackgenecom.
Matt Burgess:Now, sort of looking through your CV, it's obvious that you're a passionate public health advocate and I guess you know there's people from all over the world that listen to this podcast. So maybe I'll sort of briefly describe public health or how it works in Australia. But we have a universal health care system in Australia and basically what that means is, when we work and we pay taxes, a proportion of that tax or that money goes to the public health system and if you are Australian or you're a permanent resident and you qualify for a Medicare card, you have access to public health. Now, it's not a perfect system, but I think it works pretty well. Do you think that that is a fair sort of characterization of public health in Australia.
Julia Mansour:Yeah, the public health system and access to health services. It is universal and while the system is very stressed at the moment, it's extremely stressed. There is access for everybody and that's really important, and it's regardless of whether you can afford pay or not. There is access.
Matt Burgess:Yeah, and I guess sort of one of the interesting factors that maybe people outside the system don't quite realise or understand is that the private health system works quite closely with the public health system and if you pay into the private health system that sort of can take some of that pressure off and they sort of work in tandem so the people that can afford it can sort of help prop up the system for the people that maybe can't afford it.
Julia Mansour:Yes, that's right. That's how it works.
Matt Burgess:So like one of your jobs was prevention of petrol sniffing and that seems like such a difficult sort of controversial, highly charged kind of area, Can you tell us a little bit about your experience in that?
Julia Mansour:Yeah, so that was a really amazing experience that I had working in the Commonwealth Government Department of Health. So that's effectively probably the equivalent in other countries is like the Ministry of Health. So that particular programme was an Indigenous Health programme. So it was a programme that was focused on reducing harm to young Indigenous people, because we knew there was evidence that there were young Indigenous people out in remote parts of Australia mostly who were using petrol as a substance to get high. So petrol sniffing to get high. But the concern was that the type of fuel that they were sniffing, which was often almost like an aviation fuel, actually was significantly damaging their brain. So it wasn't just an interim you know, let's get high and have a bit of fun and no major damage. It was causing significant and permanent damage.
Julia Mansour:So there was an initiative started, I think early 2000s, and the federal government funded it which was actually to replace lettuce fuel in all of these remote areas with what we call low aromatic fuel, and so my job in the Commonwealth Department was to manage a team of people and to work with a number of different stakeholders, including Aboriginal communities on the ground, service station owners, to actually change their supply of fuel from lettuce fuel or an even normal unleaded fuel, to low aromatic fuel so that if the sniffing were to occur then it wouldn't be harmful because there was the, it was the well, and it actually wouldn't be attractive because the low aromatic fuel was not desirable for sniffing. So it was a health prevention measure and it was really highly successful. We reduced over time, reduced the rate of sniffing significantly and that was by replacing the fuel in pretty much you know, all of the service stations where there were issues and you know through a broad chain of outback kind of travel in Australia and it was amazing. We did lots of like communication campaigns. We got to work with people on the ground.
Julia Mansour:I did some amazing work in terms of legal negotiations with big major fuel companies like Shell and BP, which is really out there. So, yeah, it was took me into a whole heap of different areas of work. I ended up sitting in Parliament while we passed a bill called the Low Aromatic Fuel Bill to bring in a law to actually, you know, ban aromatic fuel in certain areas. It was, yeah, pretty cool. It was an amazing experience.
Matt Burgess:That's fantastic, julia kicking goals. So I'm guessing that your office was in Canberra, but did you get to travel to outback Australia in that role?
Julia Mansour:Yeah, so I got to go to our springs and Cunapedi and I got to travel to I'm pretty sure I went to Darwin with that job. I didn't get as much outback on the ground as I would have liked to really remote areas, but I did get to go to a few different conferences and things to talk about what we were doing and to promote the program and the objectives. Yeah, it was awesome.
Matt Burgess:Wow, and then it looks like you moved on to the public health emergency response to Ebola. Was there like a big sort of need for that in Australia, or was it sort of interactions with Africa where, like, ebola was more common, or what sort of? How did that job work?
Julia Mansour:Yeah, it was a huge Australian government interagency effort and it was very much about the need to support the humanitarian crisis in West Africa. With that, it was occurring as a result of the Ebola outbreak and I was working in the health task force the Ministry of Health Task Force but we worked very, very closely with Department for Foreign Affairs and Trade and also Department of Agriculture and it was really about there were significant calls for Australians to support the effort on the ground in West Africa, but there were concerns about the risk to Australia that if we had health workers going over there, then what was the risk of them coming back and bringing Ebola back to Australia and how did we manage that? How would we measure them? Plays that allow Australia to fulfill its objectives in providing that support and aid on a humanitarian basis but protecting our people and protecting the rest of the population here. And so my job there in the health task force was actually to provide some support and advice from public health framework and I worked very closely with you know organisations that people would know a lot more about now, which is the Australian Health Protection Principal Committee, hppc, who were making a lot of the decisions through the COVID experience. So that's how I, you know, got to meet a lot of those people and that taking advice from HPPC and providing advice to the minister and working across government with other agencies.
Julia Mansour:And we have in Australia the Australian Government Crisis Management Framework which basically sets out which agency is responsible for managing different types of crisis. So of course, the Public Health Crisis Department of Health becomes the lead agency. And we had to work very much hand in glove with Department of Foreign Affairs because the issue of the aid is their lead and their responsibility. So we, between us all, set up a framework where aid was provided. But we had an arrangement where there were certain checks and balances of people returning to Australia where they had to make declarations at the airport where, if they had been in a high risk area that they maybe were assessed further at the airport, and because Department of Agriculture manages the biosecurity staff at the airport, they were involved in that.
Julia Mansour:And then we had a monitoring arrangement which was also set up with the states and territories. So states and territories were setting up like text messaging arrangements for monitoring temperature of people who had returned and you know, or symptoms and other things of people who had returned from West Africa for a period of time to make sure that they didn't develop any symptoms. So through all of that we successfully had a large number of people go over and provide support in Africa and we had no cases of Ebola in Australian people coming home. So it was successful in that regard. Yeah, it was good.
Matt Burgess:Oh good, you know very good. But it's kind of comical because Ebola, you know, although it's a very serious condition, you know Australians weren't really affected in Australia and then all of a sudden, out of the blue, we are. Well, we were exposed to the pandemic that sort of went across the globe. And so do you think that your time working with Ebola sort of helped with the COVID crisis and like, were you involved with sort of the emergency response from a COVID point of view?
Julia Mansour:Yeah, absolutely helped. I mean, it helped me on a personal level because I knew from very, very early days what was happening behind the scenes and you know why measures were being put in place. But then in July 2020, there was a need here in Tasmania for someone to come and help manage the Emergency Operations Centre Public Health Emergency Operations Centre for the COVID response here in Tasmania. So I actually went and worked in that space and, yeah, so my experience in the Commonwealth certainly helped me basically assimilate into that space and to work in that environment and to understand the machinations of the roles and responsibilities, and in emergency management they talk a lot about command and control. To understand all of that you have to actually have experienced and lived it and understand what the risks are. If you don't follow through and understand each person's individual role, like you can't just be jumping in and helping out it doesn't work that way. So, yeah, governance is very, very important and roles and responsibilities are very, very important for those types of responses to function effectively. So that really, my previous experience certainly put me in good stead for that and my previous experience also meant that I got to.
Julia Mansour:I knew Dr Mark Beach, who's the Director of Public Health here in Tasmania. I knew him from my previous working with Canterbury, working with AHPBC, so that just built a natural and immediate kind of connection and it meant that I just could sit in a room with him, you know, for half an hour every morning, which is what we all did. 8.30 every morning we had our morning briefing and I just kind of knew where he was at. I could assimilate that and understand that and take that to the rest of the team about this is where we go in and what we're doing for today and how things are changing. But also with you know, we had an amazing team. I was definitely the baby of that team, like I had an amazing off-sider, julie Graham. So we were the J team and we yeah, it was a really good experience.
Matt Burgess:Wow.
Julia Mansour:For long, but good yeah.
Matt Burgess:So now you're back genetic counseling and I see that you're working in the private sector and you know, a few years ago I opened a private practice and you know, being such a strong public health advocate, I really needed to sit myself down and sort of reconcile like public versus private and sort of. Where I landed was when I worked in the public sector. I saw that we had a finite amount of resources and we couldn't help everyone and there was a group of people that actually required genetic counseling or required a service, but they didn't qualify in the public system and so that sort of made up a, you know, a group of the people that I saw in my private practice. Can you sort of talk to us a little bit about, you know, genetic counseling in the private sector versus the public sector and what you sort of think about that?
Julia Mansour:Yeah, it's really I'm learning a lot through this experience and it's interesting because in coming into it I didn't think it would be quite so different, but I really am learning a huge amount about the differences in practice in the public system versus the private system. And to start out with, I think it's important to be a pretty skilled clinician, I think, to be able to work in a private context, because you're working very much on your own and so that's built a different level of awareness and, I guess, vulnerability for me about my practice. So I have to be really confident about the decisions that I'm making and the advice I'm giving. I don't have someone right there next to me, you know, or down the hall that I can ask, you know, just before I run into clinical, just after, to get the answers and the updates about did I do this right or am I thinking correctly or am I missing something here? In fact, I have to formalize those types of arrangements and conversations. So it's, you know, I have really strong connections for supervision, and both peer supervision but also a structured supervision to some clinical cases. It's so I've found that in some ways, that's much more important now that I'm working in private, because I just have not embedded in a clinical genetic sense in the way that I used to be, so that's been a big growth for me on a professional level. I think the other thing is what you said about choice and it's really helped me think through or forced me to think through. You know what are my, what's my role here, how do I fit into the system?
Julia Mansour:And I think that there needs to be a continuum between the public health system and the public health space and private health, and I think the reality is that there are, that, as I said before, the public health system is quite stressed and in the area of clinical genetics, you know there are people who are waiting six months, 12 months for an appointment and I know our laboratories are also stressed and taking, you know, some time to like up to three months to return results at times.
Julia Mansour:So things are slowing down and that's really hard for people who are stressed and anxious, so that one side of it's financial and another is the plight and demand and time and resources.
Julia Mansour:And the public health system can't afford to pay for testing or for appointments for every single person and needs to have a criteria around who they will say and you know who are at highest risk, who needs the service the most, and then the people who are at lower risk or don't need the service as much, unfortunately in a situation where they have to wait. And so I guess offering a private service provides people choice, and I think, when I've thought more deeply about it, I think that's what we do as genetic counsellors. In many ways, we trade in choice, we provide people with choices, we provide people options. Whether we do that in a hospital clinic or a public health setting or in a private setting, our trade is the same effectively, but I guess, as offering genetic counselling as a private practitioner gives just another element of choice is the way I see it. And so it's like, if you want to, there's an option here. But you know, I do see it as an extension of existing services.
Matt Burgess:Really, yeah, okay. So it's sort of like another way that we can be client focused, and that's a big part of our role.
Julia Mansour:Yeah, absolutely yeah.
Matt Burgess:You for well, that might be a good place to finish up. Thank you very much for your time today. Yeah, it's been great chatting with you.
Julia Mansour:Thank you so much. It's been really good. We've covered lots of things, didn't we? You taught me to face, as I had been for a long time.
Matt Burgess:Well, I enjoyed going there with you and I think you answered the very well. I look forward to catching up with you, hopefully soon, in person.
Julia Mansour:Yeah, cool. Are you coming for the international congress?
Matt Burgess:I won't be home for that, but I do think I will be in Melbourne for the Austrelation Society of Genetic Counselors meeting in November.
Julia Mansour:November. Okay, hopefully I'll see you then. That'll be great.
Matt Burgess:Excellent. Well, have a good rest of your day and I'll talk to you later.
Julia Mansour:Thank you so much. I'll go see you, Matt.
Matt Burgess:Bye. I'd like to say a big thank you to Julia for being my guest today. Also, thank you to the episode sponsor Track, jean, and to my wonderful producer, omi, at Rossinger Studios.