Myriad Oncology Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit myriad-oncology.com/myriad-oncology-live for a list of dates, times, and subjects.
Myriad Oncology Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit myriad-oncology.com/myriad-oncology-live for a list of dates, times, and subjects.
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0:00:11.5 Dr. Thomas Slavin: Welcome. This episode of Inside the GENOME is a recent recording of Myriad Oncology live, a webinar hosted by me, Dr. Thomas Slavin, Senior Vice President of Medical Affairs at Myriad Oncology. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, please visit Myriad Oncology for a list of dates, times and subjects. I look forward to exploring the world of genetics with you all.
0:00:38.7 DS: Hello, everyone. Welcome to Myriad Oncology Live. I'm very excited to be here today. Before I forget, we are recording these now, just to let people access them later. Since I always forget to say that, better to start with it. Today we're gonna be talking about genetic counseling training programs. We have a special guest, Janice Berliner. Is that how you say your last name, Janice?
0:01:06.8 Janice Berliner: Berliner.
0:01:08.8 DS: Berliner, alright. Well, thank you.
0:01:10.2 JB: Like you're in the City of Berlin and that's where you're from.
0:01:10.9 DS: Got it, thank you. Thank you so much for coming on. And Shelly helped make the connection, so I appreciate you always helping out, Shelly. And Shelly's here to man the chat. So if this is your first time here, yeah, this is an open forum. We do these thematic base, but if you have any question on your mind, feel free to ask. Today's theme is really about genetic counseling training, but feel free to ask whatever you want. And you can unmute yourself and ask a question, that's usually the best for discussion, but if you're not comfortable with that, feel free to just send a chat question to Shelly who will field that and make sure it's answered.
0:01:56.7 DS: And just for those who haven't been on for a while, I know it says live weekly, I guess we're fibbing a little bit, but we're... This has always been a work in progress, and we started during COVID last year, when I joined the company and we've been just constantly evolving it, we're moving towards more just having special guests on each one of these, but with that, it just takes more coordination. We're trying to do a richer content, but probably only gonna be doing it about two times a month or so going forward. But again, who knows what that'll look like in a year?
0:02:32.5 DS: But in two weeks, we'll be talking about prostate cancer genomics, and we're gonna have Todd Cohen on that one, and also, Rob, maybe you'll be around for that one. I see you on. Thank you. And then in October... Yeah, we just posted all these, so we have male breast cancer, we're gonna have some patients coming on to that one, and then Shelly also has some new data on male breast cancer, so that would be good. And then we're gonna close out October getting ready for Halloween with polygenic risk score, translation into clinical care. So we've been doing a few on polygenic risk score, but I've been getting feedback like how do you apply it more. We've been doing a lot on the science side, and people want a little bit more on the applicability, so we're gonna address that. Holly Pederson's gonna be on that from the Cleveland Clinic. We'll also have ED joining from the Women's Health Team. And then if you go down here, just to remind everyone where we post these things, we have the podcast, and if you just click on the podcast link... Yeah, we just posted a podcast with Todd Cohen. I did this one, I don't know, probably four months ago or so. We just finally put it up, we have some of these waiting in the wings.
0:03:54.7 DS: But anything, this is Myriad Live is from this webinar, so you can go back and listen to them. This was the one with Mark Robson and Paul Baron on pros and cons of germline testing for everybody, the limited hereditary genes with limited guidelines. This was excellent with Fergus Couch. This was probably one of the more informative ones we've done in a while. Yeah, so tons of content, it's kind of scary, actually, to look at it. It's a lot being produced. Alright. So Janice, let's get back to you. Thank you so much for coming on today and...
0:04:35.3 JB: Pleasure to be here.
0:04:37.2 DS: Yeah, no, it's very exciting. So, do you mind telling everybody who you are, what you do, how you ended up here?
0:04:41.5 JB: Sure. As you said, my name's Janice Berliner. I've been a genetic counselor for a frightening 32 years clinically, mostly. I was a clinical counselor in prenatal and pediatrics for close to 10 years, then in cancer risk assessment for about 20 years and then made the switch into academia. I had always wanted to be a program director literally my entire career, it just never happened for a variety of reasons, largely geographic. I couldn't really make it happen for a while, but now that... A couple of things all came together at one time, one, all my kids were pretty much out of the house, so I thought, "Oh, this is now a time that I could maybe think about moving somewhere for a job like that," and then lo and behold, a job opened up that was completely remote, and I didn't have to move. So it all worked out at the same time. I work from home, I live in New Jersey, and the school where I direct the genetic counseling training program is in Western Massachusetts. I go up there periodically, but for the most part, hunkered down in New Jersey, which was very convenient during the pandemic.
0:05:55.4 DS: Yeah, yeah. So you're the program director. Now, did you help shape the program from the beginning? Or was it something you created?
0:06:04.8 JB: No, but yes. So I didn't help shape it from the beginning, the first cohort of students was just finishing their first academic year when I started, which was a little over three years ago. So I started in June of 18, and the program first matriculated students in September of 17. So they were just finishing their first year. So I would say I was in on the ground floor or maybe upper basement, but I didn't actually build the foundation.
0:06:33.9 DS: Yeah, yeah. Now we don't have... A lot of people on are genetic counselors, but not everyone, including myself. Do you wanna walk through your program and... However you wanna do it, maybe a standard genetic counseling program and then any differences in the program that you are running.
0:06:53.4 JB: Sure, yeah. So as we probably all know, the first genetic counseling training program started at Sarah Lawrence College, I believe in 1969, and for a long time, there weren't too many of them. In fact, when I applied for programs in the late '80s, there were 10 across the country, as I recall, and the average number of students that each one took was probably, I don't know, three maybe. Now there are, I believe, 55 programs, and I don't know what the average number of students is, but I would venture to guess it's in the 8-12 range, maybe. The newer programs, the ones that were developed more recently, tend to start with more students, so I can think of two off-hand that started within the last three or four years, that started out with a class of 20, which was shocking to those of us who have been around a long time.
0:07:44.6 JB: But anyway, the traditional on-ground programs are two academic years, usually involving the summer in-between for clinical rotations and sometimes course work, they're not all the same. And within that time, of course, you have your classes that are on university campuses and a capstone project and all of your clinical rotations, which are typically within a fairly small geographic region surrounding the school. And some schools are... I use the word "insular", I don't know if that's really the right word, but if you have a program at, for example, Columbia University or Mount Sinai, they have so much clinically going on that all of their rotations, generally speaking, take place within the institution, Mass General, schools like that. For programs that are not tied to academic medical centers like Sarah Lawrence and ours and others, their rotation sites need to be outside of the university system itself, but if it's an on-ground program, then they're still, generally speaking, quite local. And you know, you might have people traveling during the summer when there's less coursework, sometimes people will do remote... I don't mean remote. Rotations. I mean elsewhere, your program might be in New York and you might do a rotation in Seattle, something like that, or even go overseas. Our program was designed to be virtual, to be all online. Sorry about that, phone ringing.
0:09:17.2 DS: So everything... So the students don't actually go to a physical campus.
0:09:20.3 JB: Well, they come to our campus three times... Two and a half times a year. [chuckle] That sounds funny. We have them come to campus for a weekend, at the beginning of the fall semester and the beginning of the spring semester each year, so that's four, and then they come for graduation, so five times total. This is gonna sound funny, but there's not a lot for them to come to school for, because even if they wanted to meet with faculty, most of us aren't even there. So it's really run virtually, but they come to campus for these weekends so that we can all be together, it's very social and it's very academic as well. So we have guest lecturers that do workshops. We do participatory activities like a name that syndrome contest and a medical terminology game and things. We do some ice breaker activities. We teach them about the... In their initial, the first time they come, we teach them how to use our learning management system and how to use the online library system, all those kinds of things. So it's orientation as well as a whole lot of other things.
0:10:31.4 JB: And when we do that at the very beginning, it's a good way for students to get to know their classmates and the cohort above them. And then we set up the mentorship activities to, mentor-mentee get-together so that they have some way of feeling sort of attached. And given the social media outlets that we have now, most of our students are very connected to each other months before they even start, so right after the match happens, they start connecting with each other, which I'm sure is true for every program, but it's more important for ours, because they're not on campus together very much. Their clinical rotations can be done anywhere in the US. So if a student is from, I don't know, Albuquerque, New Mexico, we can set up a clinical rotation in Albuquerque, in fact, we have several of them. So we have sites all across the country, and as we have new students from new places, we develop affiliation agreements with new programs. So we have to work really carefully with other genetic counseling programs to make sure that we're not stepping on anybody's toes and stealing rotations and things like that, but we can usually get students where they want to be or at least close.
0:11:45.2 DS: Yeah, and this sounds pretty innovative, was the program... There is a brick and mortar campus, was it started as a brick and mortar type of program and then it turned into this?
0:11:55.7 JB: Yeah, sort of. So the person who originally started the development of the program was brought in by the university. So I think the university had the idea, "Let's make a hybrid program," and that's what the first person developing it, who was a genetic counselor and was a consultant hired to do this, had build it out to be. So there'll be, let's say, largely asynchronous classes, but come to campus on weekends for whatever. I never really look that closely at it because we never really did it. So from the time that idea came about until the time the program actually matriculated its first students, things changed and it became all online. And I wasn't part of that, so to tell the truth, I don't really know why it was changed.
0:12:43.6 DS: How many years ago was that?
0:12:46.3 JB: Well, the first cohort started in September of 17. And I think that Bay Path got new program accreditation through ACGC in 2015, or maybe early '16 before my time. So I don't know the dates exactly. But we did just achieve our full accreditation. So after three years, you have to apply for... You're no longer a new program. So we now have full accreditation.
0:13:14.9 DS: Yeah. And are there other programs like this in the country right now that are really all virtual?
0:13:20.3 JB: Yeah, there's one. It's at Boise State University. They started two years after we did. I believe they matriculated their first class in September of 19. And their program is very similar to ours. The two differences that I know of are, one, they don't have their students come to campus for those weekends, and two, they have a set number, I don't really mean that the number can't change. I mean a set of clinical rotation sites within a five-state radius, Idaho and several around them, Washington State, I think, and Montana. Anyway. So their students can go to all sorts of different places for their clinical sites, but it needs to be one that they've already established. So if you're from Florida and you apply to Boise State, you have to know that when you do your clinical rotations, you're gonna be going out to the Pacific Northwest. Whereas with our program, if you're from... I don't even remember what I just said. If you're from San Diego or somewhere, you can do your rotations there, assuming we can find something for you, and we usually can, then you can be wherever you wanna be.
0:14:27.6 DS: Yeah. That's nice. So how's the feedback been from the students and external people about the program?
0:14:34.6 JB: Well, it depends in what regard. But I think what people like the most about it, what I like the most about it, is that it allows us to have such a diverse student body, because people who used to not be able to go to a graduate program, because... If you live in an area where there isn't one, and you're geographically locked for whatever reason, marriage, young children, elderly parents to take care of, a job you can't leave, whatever, then you are just precluded from going to become a genetic counselor. And now you don't need to do that. So the average age of our students is a little bit higher. Our average student is 28 or 29. Many have children, many have had jobs for a long time, some...
0:15:17.9 DS: Are they still working their jobs?
0:15:19.5 JB: They are, although we tell them in strong language, for their second year, we recommend they go part-time, because between full-time clinical rotations and capstone project and course work, it's really a lot. We've had students do it. I don't recommend it. But working part-time, absolutely, whether it's just to keep your hands in your profession or to keep your medical benefits or the salary or whatever it is, that's absolutely fine. And everybody does. Yeah. But we love the diversity that it gives us. We feel like we're making a mark on the profession, because we have people coming from all over the country and from all kinds of backgrounds. People who were social workers and marketing experts, and we had somebody who worked for Epic. And so it's really a nice mix.
0:16:08.7 JB: And we had a case conference kind of thing recently, and a student was talking about a patient who was considering terminating a pregnancy, and someone said, "So she'll just do that." And she said, "You don't understand. We live in Texas. That's all changing." This was the end of August. She said, "This is changing September 1st." And then another student piped up, "Well, here in Oklahoma, here's what we do." And it was the richest conversation, because we had people from all over who could speak to how things are done in different places. It was really wonderful.
0:16:39.5 DS: Yeah, yeah.
0:16:42.1 Shelley: Janice, I have a question. With the diversity of the ability to have all that flexibility, have you seen any difference in the type of applicants you get? You mentioned older, but I just wonder, given that our profession is 90% White females, is there any kind of a greater opportunity there for us to have greater diversity?
0:17:05.8 JB: I think so. Judging by our last applicant pool, I would say yes. And our... The class that's just matriculating now is, I calculated this, 22% non-White/non-female, which I thought was pretty good compared to the roughly 10% that the profession is as a whole.
0:17:28.8 Rob: Mm-hmm. I have the same question with regards for potentially international students, somebody who wants to Zoom in from the UK or Germany or something like that. Would that be possible?
0:17:40.1 JB: Well, theoretically, that sounds wonderful, and...
0:17:42.4 DS: The rotations would be different, but...
0:17:44.0 JB: Not just that. Bay Path University does not allow for international students, at least not on the graduate level. And I don't know why. And I've asked that question, and it's a drum I've been beating, because I feel like it would really enhance our profile and enhance our diversity and so forth. The time change, though, can be very tricky. So we have a brand new student who's in Hawaii. So we're on Eastern time and she's on, I don't even know what you call that.
[chuckle]
0:18:13.6 JB: Pacific Island Time or something. So she's six hours behind us. And when we interviewed her, we said, "We would love to have you, however... " When we do synchronous lectures or activities, it's not a lot of them, but when we do them, we do them roughly... We start between 7:00 PM and 8:00 PM Eastern Time so that we don't go too late for the East Coasters, but we don't start too early for the West Coasters so that they can't... They're still in clinic or they're still at work, so it's... We try to strike that balance. But for somebody who's in Hawaii, where it's 1:30 PM in the afternoon, that's a little bit tricky. And she said that would be okay for her, and she's actually moving to Connecticut within the next year anyway, so she wasn't too worried about it. But the time change if somebody's in, I don't know, Bucharest or something, could be a real issue. But it's a non-issue, unfortunately, for us, 'cause we're not allowed to do it. Not yet anyway.
0:19:07.0 DS: Yeah. No, this is really interesting. The Capstone, you had mentioned that a few times, and that's new to me. I thought most genetic counseling programs just did a research project. Is that also a part of it? Or is that more...
[overlapping conversation]
0:19:24.2 JB: Well, I think it varies from program to program, but there is now an ACGC requirement for some kind of research project and what that looks like, I think is largely up to the programs. But I think more than not, everybody's going to Capstone's these days, very unofficially. That's my thought on that.
0:19:43.1 DS: Yeah, interesting. And Capstone, and forgive my ignorance, but Capstone... 'Cause I always think of it more in the MBA type world and everything, so I guess there's a research format to it as well, okay.
0:19:54.0 JB: Yeah, a lot of them, not all certainly, but a lot of them are survey-based kinds of things. So, whether they're serving genetic counselors or PA students or, I don't know, patients who go to an IVF clinic, whatever their research question might be, a lot of them are surveys, but not all of them. We had a student last year who did a project on how genetic disorders are portrayed in the media.
0:20:19.4 DS: Yeah. Wow, interesting.
0:20:20.5 JB: Yeah, it was. She used Call the Midwife as her main focus.
0:20:25.1 DS: Yeah, yeah.
0:20:26.9 JB: Yeah, it was great.
0:20:29.6 DS: Yeah, that's good.
0:20:29.7 Shelley: So, what makes it a Capstone versus a thesis?
0:20:34.9 JB: You know, I'd have to look up the definition of Capstone. I don't know.
0:20:38.9 Shelley: Yeah.
0:20:39.7 JB: I think it's more... In my mind, and maybe I'm wrong, I think of a thesis, not a PhD level thesis, but in general, I think of them as more like a research paper of... You're compiling research from other places and telling a story about it or coming to some conclusion about it versus creating something original, doing an original project that produces data. That's my very loose understanding.
0:21:08.8 DS: Yeah. When COVID hit, we didn't get into it, but I don't know if you were in the position already, but I'm assuming if you were, people were knocking on your door trying to figure out how does such a virtual program... Because almost all the programs did go to virtual, right? At least...
0:21:25.2 JB: That's right and exactly right. So, in the summer of 2020, I worked with some people from Boise State to put on a webinar during the program, Directors Conference on exactly that, on what is it to teach virtually with intentionality, not by default because you had to because there was a pandemic. And I have every expectation that the other programs that did it very suddenly and abruptly did a fine job with it, but it is different when you design it that way, to begin with. Yeah.
0:22:02.8 DS: Yeah, yeah, I would imagine.
0:22:03.4 JB: Yeah, and we did an educational breakout session as well at NSGC two years ago on the same kind of topic. I mean, we were all newer to it then than we are now, but still... There were a lot of naysayers at the time, hopefully not as many now.
0:22:19.1 DS: Yeah, yeah, it's very different. Are the brick and mortar programs now getting back up to speed on campuses? I don't even know. I'm sure it varies from state to state.
0:22:27.9 JB: I think so. I'm sure it does. Yeah, I don't actually know, but I would think so. Obviously, that was the goal with whatever protection's in place.
0:22:39.9 DS: So, any questions on the program that we're talking about from Janice? If not, I had a question I wanna move into on... What do you think the... Just more broadly, as a program director, trying to mold minds, what do you think are the opportunities or deficits that you're seeing in genetic counseling training right now?
0:23:09.1 JB: I think one of the problems that we have is true for medicine, certainly, and probably a lot of other fields where things keep expanding. We have so much more knowledge than we used to and so many more different branches to go down. When I graduated from school, you could be a prenatal genetic counselor, you could be a pediatric genetic counselor, if you were really lucky, you could do both. But that's all there was. And now, obviously, you can do oncology, cardiology, neurology, psychiatry. There's a million different things you can do, and we haven't changed the length of our training programs. We haven't made them bigger, broader, longer, so where do you fit all of that in? And what do you short change as you're doing it?
0:23:55.3 JB: So, we found that where we were short changing, not intentionally, of course, was in our psychosocial content. And so, we're working hard on adjusting that, but in a way, something has to give. So, what do you give less time to? And not only that, there are more technologies. There are so many more things that you can do. When we learned about it, what did we learned? Amniocentesis and chorionic villus sampling. Well, now, there's cell-free DNA and NIPT and IVF with PGD, and like a million other things that we didn't have to learn about 'cause it didn't exist, which was definitely worse for patients. But when you don't change the timing of your program, how do you fit it all in?
0:24:40.8 DS: Yeah. Yeah, and one thing I've thought about a lot is the tumor side of cancer, who owns it? It seems like it just naturally was taken quickly into the arms of medical oncologists just because they're seeing the patients, they saw the immediate therapeutic benefit and link. And now it seems like there's this assorting of how to handle this across the United States, at least, I can't really speak internationally, from a genetic counselor standpoint, where they're trying to find their place in this whole thing. I just wonder if you had any thoughts there.
0:25:24.5 JB: I can only go by the experience that I have. So the job that I had prior to being at Bay Path was as a clinical genetic counselor in the oncology service at Memorial Sloan Kettering with Mark Robson, who you mentioned before. And the way we did it was, the tumor testing that was done for pathology reasons had a whole system in place where if there was a mutation identified that was thought could be hereditary, then the person was referred to the clinical genetics service. And it was fairly standard and routine and worked well. But that's at a really well-oiled machine of Sloan Kettering. And how it works in your average community hospital, I don't know. But I can see what you are saying.
0:26:14.1 DS: Yeah. And that still is for the hereditary side, it sounds. I'm also thinking about, yeah, the comfort level just on the tumor side in general. Yeah. And there's discussion on the program director level. I don't know. You must go to secret program director meetings or something like that.
0:26:30.6 JB: Not so secret, but yeah. [chuckle]
0:26:33.1 DS: I mean, does this ever come up of the training? Is there a desire to get more into the somatic side of things, or is it...
0:26:40.7 JB: There's a lecture here and there in our program and everybody else's, but I don't know that it's a specific push to get into it. I think there's... If you're looking for new avenues to go down, newer, I think more of the personalized medicine, pharmacogenomics route is where counselors are gonna start going somehow. But I think it'll get bigger and bigger as time goes by.
0:27:00.3 DS: Yeah, yeah.
0:27:02.8 JB: I'm interested [0:27:04.5] ____, from Shelly, if you think that's true.
0:27:08.8 Shelley: Yeah, I think it's true, but I think they come together, 'cause you're gonna have to have the somatic testing to decide which chemotherapy to give or which anesthesia not to give. And so, I feel like at some point, there's gonna be this cross-roads where the training programs are gonna sit back and evaluate, are we gonna focus just on the hereditary germline, or are we going to pull in the somatic, which is a whole huge population of authorities that you can go into, which I think would be a huge undertaking for the training programs because of the tight timeline of length of the training programs with the depth and breadth fit during that timeline.
0:28:00.6 JB: Exactly, yeah. It would not shock me if in the next, I don't know, five to 10 years some programs went to three years. The problem with that, among others, is cost. That's a heck of a lot more tuition money for students who at the back-end of it may not be expecting to be six-figure wage earners, so... Although that's changing too. Our salaries have gone up over the years too, fairly considerably. So, I don't know. And a lot will maybe depend on the legislation for Medicare coverage and so forth. Yeah. A lot of different things tied together.
0:28:38.3 DS: Yeah. Maybe... You probably have some unique insights, all that, the coverage and billing and everything. Where do you see that going? If you had a crystal ball over the next five, 10 years, do you think this will become pretty routine, billing independently?
0:28:55.6 JB: I hope so. To some extent, it depends on who's in office, because how much do we value medical care, and in particular, the health-related professions that are not medicine-specific for MD proper, so to speak. I don't know where that's gonna go. It will be very interesting to see. And if anybody who's listening is thinking about this or has insight into it, I'd be very interested to hear some comments. It's been so up in the air for such a long time, and it feels like nothing ever makes any progress. Congress convenes, and then it adjourns and we start all over again with the bill the next... In the next Congress, so.
0:29:39.6 DS: Are there any states right now that people are billing completely autonomously? I don't know.
0:29:48.1 JB: I don't know. Without the Medicare stamp of approval, it's a lot harder. Insurance companies, not all, but most tend to follow what Medicare does. So, if Medicare hasn't given it the Federal stamp, I'm not sure any states would really have anything to do with it. Maybe their private insurance companies. I don't know.
0:30:08.2 Shelley: They can bill, but it's a cash fee-for-service.
0:30:14.6 DS: Yeah. I've been surprised, because I do a lot with the City of Hope course and remain on guest faculty for that and over the years, I've seen a few graduates go... But now that I think about it, they're really all nurse practitioners that I can think of. And they started their own literal independent shop to do genetic counseling, which is very interesting.
0:30:39.8 Shelley: There are some genetic counselors who do that too.
0:30:39.9 DS: So, they must be doing well enough.
0:30:42.2 JB: Yeah, I don't entirely know how they do it. It probably is a fee-for-service kinda thing. I don't know how else really they could do it.
0:30:50.1 Shelley: So Janice, with the complexity of where genomics, genetics is going, do you see any of the programs having specialty tracks? So, if a student were to go into just cancer or just metabolic, so then they would take a test that's just on that versus all...
0:31:12.7 JB: Right. I've thought about that and I... Part of me really likes the idea, but it all ties back to accreditation. So right now, the way ACGC has set everything up, we couldn't do it, because by definition almost, we need to graduate generalists, people who are competent in every area. So, when you come into a training program, you are required to do rotations in prenatal, pediatrics and cancer. If you wanna add other things in and you have the time, you can do that, but those big three have to be done. And you have to be able to show that you've had participatory cases in each of those things in order to be eligible to sit for boards. So it's kind of a... It's a two-prong thing. It's certification and its accreditation from that standpoint. It doesn't mean it couldn't change though, and there was a talk, you might remember, it was... Oh my God, it was probably 25 years ago, there was a talk about creating a specialty exam in cancer genetic counseling. And it kinda died on the vine, but that was a long time ago, and there were many, many fewer of us who had done cancer genetics at the time. So, I could see that happening, but to my knowledge, and going to these secret program director meetings, I haven't heard rumblings about that yet, but I could see it going that way.
0:32:29.1 DS: Yeah, some of these are just so... The knowledge level is so nuanced. I think of... In 2014, when I went to City of Hope and took the... I just audited the course, my first year there, and I came from... Case Western Reserve was trained by Georgia Wiesner, I had a fantastic... We had a really robust cancer genetics program going. I had an interest as an MD clinical geneticist in cancer genetics at the time. And when I... Still with all of that, I did great on my boards, all that, but still, when I went to the City of Hope, I felt like I learned 60% of the material that was taught in the 109-hour CME course at the time, which has probably only expanded a few hours at this point, was new to me. Even as an MD, a lot of just thinking about cancer and stage, a lot of... It was really eye-opening. But yeah, it's that above and beyond, maybe what an average... A generalist would need, but I don't know.
0:33:32.2 JB: Well, there are a lot of programs now. So, if some of them remained generalized programs and some of them specialized, that could potentially work too. I don't hate the idea at all.
0:33:45.9 DS: Yeah.
0:33:46.9 Briana: Janice, I have a question for you.
0:33:48.2 JB: Yeah.
0:33:50.1 Briana: Back when I was in clinic... I live in an area that has a program, locally. I actually graduated from that program, but most of their rotations stayed within the academic centers, even though there was a wealth of genetic counselors within the community who would love to be involved with students and supervise students. I actually never had the opportunity to supervise students until I had programs like yours or programs that contacted me because somebody wanted to do a summer rotation away. And that was the first chance I had ever had to supervise. So, I guess my real question is, do you do any proactive outreach to the DC community to assess interest on people who really would like to supervise but don't have any other opportunity to build that network of people?
0:34:43.6 JB: Yeah.
0:34:46.2 Briana: 'Cause I think that's a big problem within our profession, is we have the people and resources to help train, but we don't always have access to the students either.
0:34:58.1 JB: Right. That's a great question. And given now, since the pandemic hit, that a lot of rotations are actually done by Telehealth, that would lend itself even more to it. And to be honest, we have had a field work coordinator who just left us on Friday, and we're in the process of hiring somebody new. But she was so good at her job that I really didn't honestly have to pay a lot of attention. So, how much outreach she was doing on a general level, I don't think a lot, but probably some. And I will tell you that when the pandemic first hit and we had second year students who were about to graduate and needed to finish their clinical rotations in MD and every other program, there was a mass scramble. What do we do? Because so many clinics were actually just closing down and they weren't seeing patients by Telehealth or any other means. And so, we worked with other programs to create standardized patients and simulated cases and so forth. So, we have that. And like you said, we reach out to programs or to clinical sites when we have students in that area. But I do like what you're saying about doing more of a generalized outreach so that somebody who's in an area maybe where there isn't a program and that person isn't able to supervise but would be willing to do so by Telehealth, that could be very interesting. I like that idea. Where are you located?
0:36:29.5 Shelley: It could be even something as simply as putting something on ABGC and letting the membership know to go in there and say, "Hey, if you're interested ever in supervising a student."
0:36:37.8 JB: Right, yeah. That'd be interesting. Briana where are you located?
0:36:45.6 Briana: Now, I'm located at Myriad but back in my clinic days, I lived in Boulder, Colorado.
0:36:52.4 JB: Wow, very cool. I was gonna say I'll send patients your way but...
0:36:57.4 Briana: We do... Myriad does have student rotations.
0:37:03.3 JB: Yeah, exactly.
0:37:03.6 Briana: Don't forget about those laboratory opportunities.
0:37:05.5 JB: We have not forgotten, believe me.
0:37:08.9 DS: Well, that brings up a good point. Thanks, Briana, about industry relations and everything with counseling training programs. This is Myriad Oncology leverage, probably talk about it a little bit. What do you see going on at the program director level? Because I don't know, maybe you know, but I would think at least, I don't know, 15%, 20% of all counselors probably work for companies at this point.
0:37:32.0 JB: Something like that.
0:37:32.3 DS: Yeah.
0:37:33.9 JB: Yeah, and there is a laboratory component built in now to our practice-based competencies. So every student has to do a little something. It would probably be better if it was more of a something. But again, there's those time constraints. We do encourage our students to do some lab-based rotation. They can't be as long as the other ones, because we have to make sure that they have the participatory cases that they need for their log books. And what they do in the lab doesn't generally account for that. But that doesn't mean it isn't highly valuable, and we have a whole system of tracking their non-log book cases. So we take advantage of Myriad and many, many others.
0:38:19.9 DS: Yeah, yeah, good.
0:38:21.3 JB: Yeah.
0:38:22.0 DS: Great. Yeah, I'll stop here for questions. I've been asking a lot. Let's see if anyone...
0:38:30.0 Shelley: So I wanted to... Can we switch gears just a little bit? So I know, Janice, you have been involved with a lot of writing and you were the executive editor [0:38:41.9] ____ Newsletter for NSGC, and now you have not one, but two novels under your belt. So I wanna hear a little bit more about how you got interested in a lot bigger writing than just for a newsletter.
0:39:05.3 JB: Yeah.
0:39:05.9 Shelley: Particularly, this is a big book...
0:39:07.9 JB: Oh, look at you! Thank you!
0:39:10.6 Shelley: With an autograph by the author. So we wanna hear a little bit about that and where your ideas come from, and what's your next plan?
0:39:23.3 JB: Yeah. Well, I appreciate your asking that. So, I cannot admit to any long-standing goal of "I always wanted to be a writer." It really didn't happen that way, it was really rather sudden. I was... I've told this story 500 times. I was in Cancun lying on a beach with my husband, reading a book, and we got up to take a walk and it just kinda hit me. I just... It came flying out of my mouth, "I think I wanna write a book." I was reading something by Jody Picoult, whose writing I love, and I was 100% sure my husband was gonna say, "Yeah, in all your spare time you're gonna write a book. Ha ha" and dismiss it. He didn't. He said, "So write book." And for the next hour we were walking on the beach, we were talking about different topics and what I could think about writing and it just kind of happened. And then once I wrote an outline, the book wrote itself. Honest to God, it flew out of my fingers, it was the weirdest thing. So I can't even really tell you where the idea for that one came from. I can tell you that the sort of global motivation is to make genetics and genetic counseling accessible to the average person.
0:40:35.9 JB: So in the same way that Lisa Genova, who wrote Still Alice and Inside the O'Briens and a number of others, has made neurologic disorders so easy to understand for the average reader, that's what I was setting out to do for genetics. So the first book is about a little girl with a metabolic disorder, and in trying to figure out where this disorder came from we end up seeing a whole lot of things about the family. A lot of family secrets and drama and trauma and things that were uncovered that the family might never... Would have wished they had never known about, probably. The second novel, which is called In Good Conscience, has Lynch Syndrome as its theme. Really... I mean, from a genetic standpoint, that's its theme. To me, the theme more is the conflict between confidentiality and do need to warn, that's how I set it up. And my sister who is my biggest fan and reads every chapter as I write it said, "See, I thought it was, you know, poor actor dude got cancer." It is that. But I was going for the overarching, more ethical theme, but anyway.
0:41:48.7 DS: Yeah, and these... Yeah, it looks like the first one, is it called Brooke's Promise? I see it on your wall behind you, it looked like the same cover that Shelley...
0:41:55.4 JB: Oh wait. That was a poster that my sister made for a surprise party... I don't know how well you can see it, but it says...
0:42:02.9 DS: Is that the name of the book, though?
0:42:04.2 JB: "Congratulations Jen, we're all so proud of you!"
0:42:08.2 DS: Yeah, but that is the name of the book? Brooke's Promise?
0:42:09.5 JB: That is the name of the book, yeah.
0:42:10.3 DS: Oh, okay.
0:42:11.5 JB: Yeah, yeah.
0:42:11.6 DS: Yeah, yeah. No that's exciting. And who's your audience when you are writing this? Is it just the general lay public trying to educate them up on a good story with some genetics overlay?
0:42:25.3 JB: It is. And I'm hoping that I have a genetic counselor audience too, who will read it and say, I hope, "Yeah, she captured that pretty well." If I didn't, don't tell me! Just kidding, I wanna know. But I think it's good for most, anyone. My son read both of them, and he's like, "You know, of course, this is not a book I would ever read if you weren't the one who wrote it. I mean, it's well written, but it's not my thing." And so there probably are... The people who read Tom Clancy and Ken Follett and so forth are not the people reading my book, probably, unless they're related to me and they're forced into it.
0:43:04.2 DS: Did you work with an editor, like pitch it and everything? Or did you just kind of self...
0:43:07.0 JB: The first time for Brooke's Promise I did, and I loved this woman, she was absolutely wonderful, and in between the writing of Brooke's Promise and In Good Conscience, she had the nerve to pass away. So that was sad. So I thought about using an editor for the second one, and then I decided, with all the people around me who were being my beta readers and the high level of spelling, grammar and syntax that they have, I was gonna kinda risk it and hope that it's okay. We'll see. If you find lots of things wrong, let me know and I'll fix 'em.
0:43:45.6 DS: That's exciting. Well, and Shelley put... Looks like both of them are available. Shelley put the Amazon link...
0:43:51.8 JB: Thanks Shell.
0:43:52.6 DS: For those interested. Well, good. Any questions? I had one on psychosomatic, which... Or not psychosomatic. Psychosocial, sorry. Gotta switch gears from my doctor brain. So for psychosocial, that's always been something of interest to me, just in the training program in general, because at least from my... Here's TJ's view of psychosocial and genetic counseling in general. A, I have no idea how much is in the training program, it seems like it's some type of component, but I really have no experience with it. B, I've worked with many counselors over the years, and I've seen everything from counselors that completely 100% embrace it and want to go back in a room and have a full on psychosocial session with someone, to the absolute flip side, which is actually in my mind, of the counselors I've worked with over the years, almost more the majority, which are... They almost don't wanna have much to do with it or just kind of see issues, but are more in the mindset of like, "Let's just do this genetic testing visit."
0:45:07.5 DS: The goal here is to figure out testing and educate on that, and then if there's a massive psychosocial issue looming, I'm gonna identify it enough to at least try to recommend those other avenues or something like that that I would send that person to too. And I just wanted your opinion on what the programs are at, or are all programs kind of level set in this regard, are some really known for psychosocial strengths?
0:45:35.0 JB: There are, definitely. So I can say even back when I was in school, the Sara Lawrence Program, the Berkeley Program, sure, there were others, were very well known to be far more psychosocially oriented than others. I went to the University of Michigan back when the earth was cooling and there were no guidelines, really. There was no ACGC, there was no core competency, there was nothing. And the program was 100% molecular. There was no psychosocial training, really at all, what you might witness in clinic, but nothing formal. We didn't learn any of the theories of anything.
0:46:17.5 JB: And so I came out of school thinking, my job is to educate people and help them come to decisions that feel comfortable to them and if that involves a little bit of a psychosocial component, okay, but it wasn't really my goal. And then I started meeting counselors over the years who almost seemed like they were trying to pull a scab off and pluck out whatever psychosocial issues they could from their patients, and I'm not entirely sure what the motivation was for that. I think it's wonderful to address it if it's there, but I don't know that creating it or uncorking it is necessarily the best way to go. But it does feel like over the years, and any genetic counselors on the call can chime in too, it feels to me like it's become more of an issue, issue is the wrong word, more of a focus over the last, I don't know, 10 years or so, that genetic counselors are starting to think the content is important, but the average patient does not care about the difference between DNA genes and chromosomes.
0:47:24.1 JB: Let's focus less on that and more on what is the patient gonna do with the information, or how did the person even get here in the first place, what the motivations for testing may be? And of course, not every patient is gonna have testing, not every patient even comes in for the purpose of talking about testing. So there's a lot that goes into it and I, personally, obviously I can only speak for myself, I've embraced the psychosocial more and more over the years as I become more comfortable with it. But one of the other problems, I think, is that there isn't necessarily a lot of training in how to handle somebody who falls apart in hysteria when she finds out X about her baby, her diagnosis, her... Whatever. And so I think for a lot of us, you're afraid to bring it up because you don't know what you're gonna do with it once it's there. It's kind of like the prenatal counselor who doesn't ask about the cancer in the family because she knows she's not gonna be able to counsel on the cancer history once she hears about it or at least not... Doesn't feel as confident about it.
0:48:30.4 JB: And I think that's... We see surveys, sometimes people ask about gender dysphoria and other kinds of issues in families and they're like, "Well, I don't really know what I would say if they said yes to any of it, so I just won't ask." And I don't know that that's even conscious. But I think as we've we become more comfortable with the psychosocial, we'll learn more about it, we'll utilize it more.
0:48:52.1 DS: What is the training that the counselors in your program go through specifically for psychosocial?
0:48:58.9 JB: Well, we're just in the process of changing that. So we are revamping three courses into two, not because we feel we need less content, but we feel like we can make a better use of those credits and shift things around. And we're gonna make it more case-based. We're gonna add more board style questions into the course so that people start thinking about the way those things are asked, because we found that that was a weak spot in our program, and we didn't have a designated person who felt like, "Okay, this is my strong suit. I'm gonna do this." So we had enough feedback from students and clinical supervisors and like, "Okay, this is our number one issue that we have to deal with." So ask me again in a year or two, I'll be really happy to tell you what we're doing and how well it's working. But...
0:49:44.0 DS: And what are you seeing around the country for other programs... Are a lot of the psychosocial aspects taught by genetic counselor... Faculty or is it psychologists...
0:49:58.4 JB: It's probably a combination. There are a tremendous number of genetic counselors who do this really, really well.
0:50:06.8 DS: Yeah.
0:50:06.9 JB: And if I could channel them and teach those courses, that would be great, but I think for some of us it's a weakness.
0:50:16.2 DS: Yeah, because it is very different like you said. It's interesting that the same person, you could have the same patient and they go to genetic counselor one versus genetic counselor two, and they can have a very different experience. One can be very molecular-focused, educational, focused on testing, outcomes, what you're gonna do, management, and then the other could be very psychosocial and you could argue that those are... Almost more than a lot of other professions where you have the ability to really swing a visit.
[overlapping conversation]
0:50:49.5 DS: Like billing and coding and all that.
0:50:51.0 JB: Yeah, but I think that the converse is also true. So if the same patient came into a session with the same counselor and in essence to the same session twice, but the first time really kind of stuck to the facts, and the second time really expressed whatever difficulties dealing with whatever, then the counselor might react very differently too.
0:51:16.7 JB: So I don't know. That's why I know two sessions are alike and that's part of what I think we all love about them.
0:51:22.6 JB: Yeah, yeah. I'm sorry, what were you saying, Rob?
0:51:23.2 Rob: I was just gonna say, I think part of it is that the genetic counseling program like, you know that if you go to the University of Pittsburgh, it's gonna be more science-focused, but also it's what genetic counseling students bring into the program. So before I was a genetic counseling student, I was a suicide hotline counselor for two years, so I came into it with a lot of that [0:51:47.7] ____ counseling already, and so I sort of latched on to that because it was what was interesting to me, whereas some people just don't have that background or don't have that interest.
0:52:01.7 JB: Yeah, that's true. And I think now that... It's always been competitive, but program admission has gotten so much more competitive that I think applicants all know they need to have some experience in a suicide hotline, a rape crisis hotline, a women's shelter... Something. So they do come into it knowing more about those kinds of things than they used to, on average.
0:52:30.1 DS: Yeah, it's interesting. Competitiveness, so that is the programs are getting more and more competitive. Outside of the US training programs, are there other avenues that you're seeing US applicants go to if they really wanna do this, but can't get into a program?
0:52:49.3 JB: Yeah, there are some international programs, whether US students are going there, I really don't know. But yeah, I guess that's why we keep having more programs being developed across the country. Like I said, there were 10 when I applied and now there is 55.
0:53:05.9 DS: Yeah.
0:53:08.0 JB: So, yeah. That does include Canada, but there's... So 51 in the US and 4 in Canada.
0:53:13.5 DS: Yeah, that's a good amount.
0:53:15.5 JB: Yeah.
0:53:17.7 DS: Well, good. Anything else? Any other questions? We're pretty much running into time.
0:53:22.7 JB: Yeah.
0:53:25.5 DS: I really, really appreciate you coming on, Janice.
0:53:27.3 JB: Oh, thanks. It was a pleasure so much fun, really.
0:53:30.0 DS: Shelley making the connection. This was fantastic.
0:53:33.0 JB: It this was cool.
0:53:33.6 DS: For those that couldn't listen today, at some point it'll be up on the podcast feed, we just put the audio on. So feel free to... If you wanna even have anybody else listen to it or anything like that...
0:53:47.1 JB: Oh, great. Okay.
0:53:49.1 DS: And share it around there too.
0:53:49.8 JB: Yeah.
0:53:50.1 DS: Well, good. Well, so next week... In two weeks, we're gonna come back again with Dr. Cohen. So he will be on and we'll talk about prostate cancer. That will be not so much psychosocial, it will be more a heavy molecular, I would think.
0:54:07.8 JB: Yeah, yeah.
0:54:08.8 DS: Urology based.
0:54:10.2 JB: Good topic, though.
0:54:11.5 DS: Yeah, yeah, yeah. No it's good. So, well, great. Well, I appreciate everyone coming on and thank you again thousand times, Janice, and thanks for everybody else.
0:54:19.5 JB: Thank you for having me. I really enjoyed it.
0:54:20.1 DS: It was very fun. Yeah.
0:54:22.0 JB: Yeah.
0:54:22.6 Shelley: Thanks.
0:54:25.3 DS: Alright, bye.
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