Inside the GENOME

Myriad Live - Let’s Talk Hereditary Cancer in the LGBTQ+ Community

May 24, 2021 Myriad Oncology Season 1 Episode 15
Inside the GENOME
Myriad Live - Let’s Talk Hereditary Cancer in the LGBTQ+ Community
Chapters
Inside the GENOME
Myriad Live - Let’s Talk Hereditary Cancer in the LGBTQ+ Community
May 24, 2021 Season 1 Episode 15
Myriad Oncology

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.

Show Notes Transcript

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.

[music]

 

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. Hello everyone, welcome to Myriad Oncology Live. Looks like we have a good turnout today, I'm assuming more will also be joining. So I'm Dr. Thomas Slavin, thank you for coming on. And a little housekeeping to start before we get into today's... Today, the... This is a... If you Google "Myriad Oncology Live", you can find us, but this has all the planned talks, and I'm assuming everybody can see when I'm scrolling through this, hopefully. [chuckle] And today, we're talking about hereditary cancer in the LGBTQA+ community, and we're joined by Lauren Giannetti and Rob Finch and others, and I'll let the others introduce themselves in a bit.

 

0:01:26.7 DS: And then next week, we're gonna get into advancements in Lynch syndrome and colon cancer. I have Dr. Eduardo Vilar coming on from MD Anderson. So he is a physician scientist. I did a recent CGA podcast with him and I really enjoyed our talk, and so I asked him to come on. He's working on all kinds of crazy things like vaccines for Lynch syndrome, and has been doing some recent naproxen chemoprevention and different things for Lynch syndrome. So I think he's an excellent guest, really taking genetics to the next level, not only just diagnosis, but now, how do you actually start using that information to keep people cancer-free, so it's really exciting.

 

0:02:13.5 DS: Yeah, and now these are built out into July, so it's good, and then also... Oh, we have a new link here, I see, "Continuing Education Webinars," so that's nice. So we have the new webinar link, it must have just got thrown on. And we have some RMS, Regional Medical Specialists, of Myriad-led webinars on there. There's a few other things on there, some of the more recent talks. We did one at CGA on RNA, we did one at US Oncology at GREAT on PRS, Polygenic Risk Score, so those are all up on there if you're looking to fill your...

 

0:02:48.3 DS: And then we have a new podcast. I'm actually logging on, 'cause we have a new one being posted probably any day now for April, and it was one that I just did with Annie Parker. I think that'll be the next one that's gonna go up. And she was one of the first people in the country tested for BRCA1 or 2, and just how her family dealt with it, she dealt with it. She has a movie made after her called "Decoding Annie Parker," which is very good. If people haven't seen it, I think it's available pretty much anywhere on any streaming service for the most part. So yeah, without further ado, I will pass the torch... And I don't know, Rob and Lauren, how you wanna go about it, and I don't know if Karen... Oh, I do see Karen.

 

0:03:35.2 Rob Finch: Yeah, Karen hopped on.

 

0:03:36.8 DS: Yeah, so Karen Hurley is on, esteemed expert in psychology behind BRCA1/2, hereditary cancer testing. She's really an expert in the psychology counseling space. I see her as really the world's expert in a sense, because she really has helped carve this whole field out of... Really, didn't really exist. She's really had a lot to do with how the field has shaped over time. And yeah, I'll pass it over to Lauren and Rob to introduce other guests.

 

0:04:14.6 RF: Sure. Okay, so first of all, my name is Rob Finch, I'm a certified genetic counselor. I know a lot of you, but not everybody. I work for Myriad Genetics, I identify as a gay man with the pronouns he, him, and his. I've been with Myriad for almost 18 years with a variety of positions in oncology, women's health, and currently, urology. I've always felt welcomed at Myriad and I appreciate working for a company that supports me, and feels like this is a topic that warrants discussion. Then a special thank you to you, TJ, for allowing us this platform. Lauren, go ahead.

 

0:04:46.8 Lauren Giannetti Sferrazza: Thanks, Rob. My name is Lauren Giannetti Sferrazza, I'm also a certified genetic counselor at Myriad. I'm an ally and an advocate for the LGBTQIA+ community, and use the pronouns she, her, and hers. Recently, I coordinated and hosted an educational webinar about genetic counseling and hereditary cancer in the transgender community, and Danielle, who was one of our panelists, was a presenter on that, so thank you, Danielle. Rob and I are both involved in Myriad's DEI forum, which also has an LGBTQIA+ group, which Chris is a member of as well. And I wanted to reiterate Rob's statement that we're very appreciative to have the support of our internal team, including our new senior director of DEI Engagement, Gwen Turner. Our Myriad Oncology Live webinars have always been open-forum style and have been a safe space for learning and growth, and we wanna reiterate this point since some of the content of today's conversation will be personal as individuals share their stories and points of view.

 

0:05:47.9 LS: To continue to facilitate this safe environment and space, we wanna encourage everyone to ask questions, and if you find it to be more comfortable to remain anonymous, please privately message your questions through the chat function. And with that, I will turn it over to our panelists to introduce themselves. Andi, Danielle, Karen, and Chris, thank you all so much for joining us today, and you all can unmute and go on and introduce yourself.

 

0:06:10.4 DS: You know, I'll interject really quick, Lauren. Sorry. For the chat, you bring up an excellent point, yes, safe space. Feel free to... Myriad Oncology Live, just ask whatever it is on your mind. We do theme-base these, but hey, if you wanna talk about probably gene mutations, you could always bring that up too. [chuckle] You can send the questions if you don't wanna chime in to Shelly Cummings who's on and she's running the chat, so she can help filter some of those and make sure that your question gets answered. I also forgot to mention, probably third week in a row that I forgot to mention since we started doing this, that this Myriad Oncology live session will be recorded so that others that can't participate will be able to listen to the content in the future. We just started doing the recordings, we've just had so many people wanna... They can't make it 'cause they're in clinic or whatever it may be, and we have obviously excellent content, and people are just really thirsty to hear some of this sometimes on their weekends and time off and things. So we're just trying to be accommodating, but if that filters what you wanna say, you can feel free to use the chat feature there and we'll at least make sure your question's answered even if you don't wanna chime in, so thank you and sorry.

 

0:07:21.6 LS: No, no, you're good. Please. Anybody feel free to interject? So Andi, do you wanna go first? I'll just do alphabetical order, makes it easy.

 

0:07:29.1 Andi: Sure, that works for me. Hi, I'm Andi I am a certified genetic counselor, I work in Brooklyn as a prenatal genetic counselor. I am a non-binary person, I use she/her, and they/them pronouns. I also use he/him pronouns, but I've been still kind of trying to figure out how to like... Which pronouns I wanna use in a professional space versus a personal space, so that's a whole thing you can ask me about if you're interested. I have been doing trainings over the past year about trans and non-binary competencies specifically. Obviously I'm a non-binary person, so that's a very personal thing. My partner is also a transwoman, so it's particularly important for me in the genetic space, 'cause we are just at the very beginning of starting to have these conversations that we need to have around genetics and gender and how we use our language, so I've been trying to do more work around that. And actually, Danielle and I in the upcoming NSTC in September are gonna be on a panel together talking about this topic as well.

 

0:08:35.0 LS: That's amazing. I didn't know about NSTC. I'll definitely look out for that.

 

0:08:38.6 Andi: Recent news.

 

0:08:41.0 LS: Yeah. Great, congratulations. Danielle, did you wanna go next? 

 

0:08:46.8 Danielle McKenna: Sure, so my name is Danielle McKenna, I am a cisgender female, and I use she/her pronouns, and I work at the Ambassadors Center for BRCA, which is at the University of Pennsylvania in Philadelphia. And this is an area that I sort of fell into, but I've been spending the past couple of years really trying to advocate to increase gender inclusivity with cancer genetic counseling, either through educational webinars, and we also teach the cancer genetics course for the UPEN graduate students. So we've been really trying to increase awareness and education on some of the unique needs of this population.

 

0:09:29.4 LS: Thanks so much. Karen, would you like to go next? 

 

0:09:37.0 Karen Hurley: That's Karen Hurley, Karen? Is it? 

 

0:09:41.1 LS: Yes, Karen.

 

0:09:43.1 KH: Okay, so I'm also... I was more expecting to be more in the background but that's okay. So I'm Karen Hurley, I'm a clinical psychologist. I'm also cis female. I think that's the first time I've actually identified myself publicly, you know... It's like... And I use she/her. So it's an interesting process, and I guess that reflects privilege, that up until this point, I have sort of... I haven't set that out loud, so I just wanted to share that's an interesting moment right there to check the privilege in this setting. Yeah, so my interest in being here is that having sat in the room with many, many people as they are struggling with the implications of having familial risk and hereditary risk confirmed by genetic testing in their families, that... I have had patients who have had issues where gender and gender identity became important, from having a team who hadn't even told his parents yet that he identified as male and non-sexual in the context of discussing BRCA risk and all the way to same-sex couples who are trying to talk about things like the impact of reproducing surgeries on their sexual expression. So I'm happy to be here to comment on that angle from my position in the supportive chair in the room.

 

0:11:52.9 LS: Thank you so much Karen.

 

0:11:56.0 KH: Sure.

 

0:11:58.0 RF: And Chris.

 

0:12:01.4 Chris King: Hi, I'm Chris King, my pronouns are they/them. I'm a queer non-binary person, and I live in Salt Lake City with my fiance and our two dogs, and I just worked for the billing aspect of Marriott, so I do appeals. But yeah, I'm just here to kinda add another voice.

 

0:12:31.0 DS: Thanks so much. I think it's really important that we have panelists from all different spectrums, and I think the first topic we wanted to speak about, and Andi, we talked about this a little bit, is just kind of definition of terms and gender versus sex versus gender expression, and I know we could go on for hours and hours. I do wanna just set that foundation very quickly, and then we can kind of move on to how does this all relate to hereditary cancer and genetic counseling and risk management, and anybody can chime in to this as well, and I figured Andi could lead the charge. If you don't mind, Andi? 

 

0:13:08.5 Andi: Sure, yeah, I know Lauren asked me, could you just go over briefly, like the difference between sex and gender, I was like, We have an hour. Okay, so we could do an entire class on the difference between sex and gender, functionally, the way that our culture is changing is the way that we use sex is to mean sex-assigned effort. So normally, external genitalia, although in the genetic space, increasingly we know that that might mean chromosomes too and functionally, the way that we are using the term gender is to mean gender identity, how somebody internally feels about their gender and may or may not express that externally, gender expression is how somebody aligns with a gender externally, so that might be... For me, my gender expression has to do with wearing button-downs and having blue hair, that's what makes me feel happy and affirmed in my gender and being external about that some people might not have a gender expression that manages their gender identity, an example of that might be somebody who's not out, somebody might be living in a situation where it's not safe for them to be openly expresses about who they identify as, people might not feel comfortable doing that in a work setting, not every work setting is accepting.

 

0:14:23.0 Andi: So you might meet somebody who identifies a certain way and expresses a different way, so that is a very, very, very abbreviated explanation of sex, gender and gender identity in the way that they are being used right now at this moment in time. A big caveat that I've been giving, what I've been talking about this stuff is, this language is changing all the time, we are in a really exciting moment of flux in our culture, and these terms are being redefined as we speak, so there are still spaces where sex and gender they're used to mean the same thing. The medical space is actually somewhere where that happens a lot, so you're gonna see those terms being used in different ways, but the way that our culture is moving at the moment is to use those terms in two different ways with gender kind of meaning something about the way a person identifies and sex meaning something about there... What they were assigned at birth. I hesitate to say biology there, because we could get into a whole discussion about the way that people's biology changes over time, especially when a gender affirming transition is involved, but basically those are the things that you need to know about sex and gender right off the bat.

 

0:15:34.4 RF: This is actually really exciting, 'cause I remember moving to New York in 2001, and doctors were just starting to ask the questions, do you sleep with men, women or both? And that was really exciting because those questions we're finally being asked and now to look how far we've come in in 20 years.

 

0:15:58.1 Andi: Yeah, absolutely.

 

0:16:00.0 LS: But Rob, I think that brings up a good question. When healthcare providers are trying to navigate and they're uncomfortable having these conversations, what is the best way to ask and to approach... Is it the way that you said it? Or are there other preferred acceptable ways to open up this door that's not typically open even now? 

 

0:16:29.7 RF: I think for me at least, and everybody probably has their own opinion, so I'd love to hear other people's opinions, I would just rather them ask rather than make assumptions, and that goes in healthcare, goes with co-workers, goes with friends and family. I would rather be asked a question that someone thinks might be stupid and to have a genuine conversation about it rather than to make assumptions and be wrong.

 

0:16:55.5 Andi: I would also say that I think that in an ideal world, this kind of information is best gathered on an intake form, I think that's easiest for everybody, I think, asking questions about sexuality when that's necessary, or about gender identity or sex assigned at birth or the pronouns that somebody wants or the name that somebody prefers to have used for them, I think those are all great things to ask people ideally right off the bat on an intake form where everybody involved in that person's care is gonna see that information, it's all gonna be put in one place, but if you do have to ask a question like, Oh hey, should I refer you with she/her pronouns, should I use different pronouns for you? What name do you wanna be called? Are you gay? Are you straight? Are you bisexual? Questions like that, I think just asking them in as a matter of fact way as possible, and also being clear about why you're asking these questions so that your patient knows that you're not asking because you're nosy or curious, or in the worst scary cases, like trying to decide whether you're gonna make judgement calls about this patient, you wanna make sure that you're telling them, Hey, I'm asking these questions because X, Y, and Z because of these legitimate reasons for your care.

 

0:18:15.5 LS: I think also, Danielle, I don't know if you wanna comment about how you've been more inclusive... Maybe with some of the paperwork, the EMR, when it comes to some of these questions. I know that on the webinar that we hosted, we talked about Oregon inventory when we're thinking of medical management conversations and hereditary cancer risk.

 

0:18:38.1 DM: Yeah, so actually our EMR has come a long way, and so we now capture preferred name and then pronouns, and if they're trans all upfront, and so you can kind of know going into a session what the situation is. Which I agree is ideal, and then it kind of saves you from any uncomfortable having to figure out how you're gonna phrase things or anything like that. Also, I know Andi and I have talked before that this population gets asked a lot of unnecessary questions, so if you are going to ask questions it's kind of important to... Like Andi said this, "Tell them why you're asking those questions." And even when we're thinking about BRCA or something, where the organ inventory is so important, potentially even letting them know, I know this can be challenging or uncomfortable to talk about organs that you might not necessarily identify with, but it is important in terms of your cancer risk assessment to go over this information. It's almost giving a little bit of a warning that we are gonna talk about it, and it might be a little bit uncomfortable, but it's really important for your care. So the EMR is something that we've done. We've changed our progeny questionnaire to also capture pronouns and gender identity, but there's still an issue with pedigree symbols.

 

0:19:55.5 DM: There's still not an agreed upon pedigree symbol for trans men and trans women, and then obviously progeny is not gonna capture any sort of symbol that denotes trans man or trans-female, so that's something that we still need to decide upon as a group in terms of expert organizations, and I think there should be some updates coming soon from NSGC. But they've been saying this for a little bit so I'm not exactly sure what their timeline is on that, but yeah, I think those are some of the main ways that we've worked to try and increase gender inclusivity in our clinic.

 

0:20:35.6 DS: Yeah, I thought that there were some suggested symbols a few years ago in a publication, and I can't remember the publication, but it was if I remember like a... You put the... It was a square in a circle.

 

0:20:47.0 Andi: Square in a circle or a circle in a square. Yeah, those were the last recommendations that came out, they're gonna update them soon, because there were a couple of studies that were done where trans people were asked, "How do you feel about these symbols," and trans people did not respond well to that being like, "Hey, this makes it seem like you think that I am a man trapped inside of a woman or a woman trapped inside of a man, and this seems confusing." So they're moving away from that. I have seen a draft of the update, so it is gonna change sometime soon, I don't know how quickly that's gonna happen.

 

0:21:20.8 KH: And I also wanted to second that this is important, not only in the clinical space, such as capturing it before a visit, but also in our clinical research, because I know we have researchers here as well, and this would be really important to bring forward to NSGC. I was doing a survey on stress and cancer a couple of years ago, and in doing the demographic section, I realized I needed to be more inclusive, so I had a check box for male, female, and then I started to think, "Well, how do I say that... What do I say instead? Do I put a long list?" I realized that other is othering. It's sort of like... So we settled on preferred description so that people could name themselves and in that space I learned something very interesting, there were... We had a few write-ins for white male. So white male is actually like a gender identity, which I found fascinating.

 

0:22:35.6 LS: So for those of you that are in clinic now, how do you... What symbol do you use since there was... An acceptable...

 

0:22:49.0 Andi: I was using what Dr. Slavin had said, the gender identity on the outside and the biological gender on the inside, but since I read a couple of those papers that showed that the trans community didn't necessarily agree with those symbols, I've started using a gender identity shape, and then writing AMAB or AFAB underneath of it. So assigned male at birth or assigned female at birth, which I think is probably where they're gonna land, and I don't know if you're allowed to say anything about that.

 

0:23:22.5 KH: I will give a spoiler alert that yes, that is exactly what they are planning to do in accordance with the studies that were done where they asked what would be best, what would be most affirming, what would be least offensive, and that was the answer that they got back, is using the symbol that is in alignment with that person's gender identity. So for a trans-woman we would use a circle, for trans men we would use a square and then denoting AFAB or AMAB based on assigned female at birth or assigned male at birth.

 

0:23:50.0 RF: That's good.

 

0:23:52.8 LS: It looks like some people in the chat are saying that they, at least Deb is saying... I know Deb, is saying that she's using those symbols as well. She had an additional question for non-binary people, she's using a diamond and writing NB, is that appropriate or are there other suggestions being made to non-binary folks? 

 

0:24:14.6 CK: Well, I was just gonna say, it's really common for us non-binary folks to be lost in medical communities because even trans men and trans-women have some privilege of being able to go in and at least people have heard of you, or have some vague understanding, but as a non-binary person, I go in and nobody knows what to do, and so often I'm never recognized. It's often easy for me to slip in under what people are saying because instead of just being still on the binary platform, I am non-binary and can't mark an F or an M, there's never a space for me, so it's hard to illustrate. So often we are forgotten, in our own way so...

 

0:25:15.3 Andi: You're usually never even asked the appropriate questions. You're given options that are just like, "well none of these apply to me, so... Sure, I guess I'll just pick one and go along with my day." but to answer that question, a diamond is appropriate for a non-binary person. I wouldn't write NB next to it necessarily, I would probably denote AFAB or AMAB if this is for medical purposes, and that's necessary to know whether that person is assigned male at birth or assigned female at birth, which when you're taking your family history, usually that is important medical information to have, but if you need to, for some reason, like say that that person is non-binary, I guess you could write NB, but I think putting the diamond there is starting to be more accepted as that meaning that somebody is non-binary. I mean, I'd say it's more accepted, but we're at a very early stage... Sorry, Chris, go ahead.

 

0:26:07.5 CK: Oh, I was just gonna say, NB actually stands for non-black. So the appropriate abbreviation for NB is E-N-B-Y. So... Just sounding it out. So instead of NB it would be E-N-B-Y.

 

0:26:22.5 LS: Rob, one more question...

 

0:26:25.2 RF: Yeah I was just gonna say this is great because... I'm sorry, I didn't mean to cut you off like this. You asked me this in the chat and I wondered if you were gonna bring this up, but we have noticed that our test request forms are terrible when it comes to this information. And so one of the things that Lauren and I have been working with some of our marketing people is to make our test request forms more inclusive and... Yeah, just more inclusive. So this was great.

 

0:26:55.5 DS: Well when we actually talked about that in the DEI form, just 'cause I recently went and got GeneSight done through my doctor and I was filling out the form, so I was like, "Oh yeah, I worked for this company." And I was like, "Well, I'm not male or female, and I don't know what I'm supposed to put here." So yeah.

 

0:27:16.6 LS: So Rob, back to the question that I semi-posed, but then we have somebody who's asked a little bit more clarifying... Would you rather people, medical professionals, family, friends, acquaintances, want to ask you upfront your orientation given that some people might be offended? You might not be, but other individuals might be, and how does somebody assess your level of comfort with those types of questions? 

 

0:27:49.0 Andi: That's a good question. I think it's a good question because this actually came up on one of our previous calls where I have never really... And Karen said this as well. I've never really had to say, "Hi, I'm Rob, I'm a gay man". Most people know it. Most people are comfortable with it, but just when I had to introduce myself on a zoom call for the very first time as being a part of the LGBT community, I got so nervous, and I speak in front of people all the time, in front of large groups, but when it became something like that, I became very, very nervous, so I guess I would rather people... I would rather people ask upfront, if they have a question and if it's important. In some situations it's not important, but specifically in medicine it is important.

 

0:28:41.0 DM: That kind of goes back to the point of relevance. Is it relevant to know that information, especially when we're treating patients. Is it relevant to know who their sexual partners are and asking it in a way that's not biased or also is non-gendered. There's a really great class from Stanford that talks through, just how do we take care of patients in a way that's very inclusive. And they talk through a lot of that of how do you ask these questions without being so just biased and not really open and allowing people to feel comfortable with you as their provider. Because there are a lot of ways in which we ask questions and we don't realize or phrases we use like, "Hey guys", it's a New Jersey thing, it's a thing we do a lot, and we're all trying to get away with it... Away from it, sorry, because it's just not inclusive. So I think that relevance is really important, and why are you asking this and does it make sense to the conversation we're about to have.

 

0:29:44.8 KH: Hey guys, is the thing I'm trying to weed out of my vernacular as fast as possible.

 

0:29:49.3 DM: Very hard.

 

0:29:50.0 KH: And I know it's working because now every time I slip up and say it, I cringe to myself. That's kind of step one, I feel.

 

0:29:58.5 CK: Right, so first of all, pull on your jersey. But second, I think it's a really good question, and based on the issue of relevance, is that there's a little bit of a lead and follow in a clinical assessment, is that patients appreciate it when it's not... You're not going off of a checklist, but that it's more conversational. So I either look for that moment when it becomes natural, sometimes people will disclose relatively early themselves or listening for... Listening for the opening to ask or to create the opening by giving the rationale. I say, we haven't spoken much about what sexual expression is going to be like and having sex is gonna be like with these searches. Let me ask you a little bit about that, tell me about your... Are you partnered? And what that's like. Sort of creating the opening and then letting the person tell you what they're comfortable with, how much of a rapport do you already have? Have you created a safe space? Have you created that sense that you are open to everything that the person has to share with them.

 

0:31:34.8 LS: That's a great point, I'm still digesting. It's a lot of great information. Go ahead Andi, you're unmuted.

 

0:31:40.8 Andi: Oh, I just wanted to check on that question that Christina just put in the chat, Chris, did you see that? And do you wanna address that? 

 

0:31:51.7 LS: You're muted Chris.

 

0:31:52.7 Andi: I have some thoughts that I...

 

0:31:58.3 CK: Sorry, go ahead and I'll read.

 

0:32:01.0 LS: Okay.

 

0:32:01.5 Andi: So, for non-binary folks on the call, are there things that you hear frequently that seem harmless that you would prefer cisgender folks stop saying or doing? I think the big one for me is assuming pronouns, I have a certain weird privilege that I find all pronouns affirming. I appreciate being called she/her, I appreciate being called they/them, I appreciate being called he/him... It's kind of impossible to mis-gender me, but I also get a lot of people assuming that I am a cisgender person, which I am not, I don't identify that way. So I think just really taking in that you can't tell somebody's pronouns just from looking at them, or hearing their voice, or seeing their name, and trying to really take in and integrate that information and sharing your own pronouns as a way of affirming like, yeah, I know that somebody couldn't necessarily know my pronouns just by looking at me... Or by sharing that on an email signature, or on your badge, or putting signs around your office, if you work in an office space where people come in that say, "Hey, share your pronouns, we would love to hear what your pronouns are, if you're comfortable... " Something along those lines.

 

0:33:15.9 LS: Thank you so much. I just really want to try to set an example for others, but I noticed that I'm not super confident, so I would feel like if I was going to ask somebody what their preferred pronouns were, I would immediately think I haven't done this very often, I don't know what the best way of doing that would be... And would you mind sharing what that would look like successfully? 

 

[overlapping conversation]

 

0:33:41.3 Andi: Yeah, unfortunately it's very complicated, it's very hard, it takes a lot of practice, you say, "Would you let me know what your pronouns are," something along those lines. [laughter] I'm being factitious because... You're right, it is difficult. It is hard to get used to this stuff, it's awkward at first, just practice, just try it. Sit alone in your room and just be like, "What are your pronouns," or "Oh, hey, would you mind sharing your pronouns for me," or "Oh, hey, my name is Andi, I use she/her or they/them pronouns. Do you mind sharing your pronouns with me if you feel like it?" Just talk it through, find whatever pattern feels best for you. It gets so natural so quickly. Try asking your friends, try asking people that you know, try asking your co-workers... You might be surprised, you might find out some information that you didn't know before that was an assumption that you made, and it is awkward at first, especially with somebody that you've known for a while, to ask what their pronouns are. There are some people that probably you know them very, very well, and probably yeah, you've been assuming correctly this whole time, but it's not necessarily gonna be the case for everybody that you've been making that assumption about. So it's all about practice.

 

0:34:47.1 Andi: I have a resource for just practicing using different pronouns, which is really good. I'll find that and I'll share that in the chat in just a second, but it's really just saying "What are your pronouns" in as a matter of fact way as possible that makes you feel comfortable. And doing the practice ahead of time, so that in the moment you're not making the other person feel awkward or at least as reducing that awkwardness as much as possible by having tried it out already.

 

0:35:15.0 LS: Thank you, Andi. I feel like part of what you're saying is just also demystifying it a little bit, but it's really just asking, do you want...

 

[overlapping conversation]

 

0:35:27.5 CK: I was just gonna say, another thing to think about is learn how to correct yourself after you mess up on someone else's pronouns, because a lot of the time our knee-jerk reaction is to be like, "Oh my gosh, I'm so sorry I didn't mean to, I do know... " And as trans people, we get that, we get that immediate reaction, but really what you need to do is you stop, you correct yourself mentally, you correct yourself verbally, and then you move on, because the important thing is that you focus on changing your own thoughts on how you view them and your own speech patterns, rather than putting it back on the trans-person to be like, "Oh no, it's okay," because really what you're making them say is, "Oh no, it's okay that you don't see me as who I am," which obviously there's a learning curve and we all get it, but that's one of those things that people don't realize that you do have to put in a lot of work personally, on every person that you meet, so making that a habit of practicing before you see them and correcting yourself immediately, and moving on and working it into the conversation.

 

0:36:41.7 DS: I really hear you. And thank you so much for saying that because otherwise, if someone becomes overly apologetic, that puts you momentarily in the role of the caregiver. It's a little bit of a flip-flop, you have to take care of their feelings and you're there as a patient to be taken care of. So what do we want from our caregivers, we want a sure touch, we want somebody who's warm, knowledgeable and accepting, and who knows what they're doing, and so you convey that with your touch about how do you do an exam, but you also convey that with questions. It's the exact same thing, is that it takes a lot of practice to ask all kinds of questions that are personal and that might trigger feelings in another person, so just not making this a special category, we have to learn how to ask this question. It's like, how do you ask any question and convey that sense that you are warm, and present, and knowledgeable, and you're the caregiver. Right.

 

0:37:57.0 DS: Thank you so much.

 

0:37:58.3 DS: And I think a good way to kind of practice is we're doing a lot of virtual communication, so when you're writing emails, looking at your emails and saying, Am I saying, Hey guys, in my emails... Which shame on me, I did for a long time, or, Hey, girls, not doing that anymore, or what gender am I using in my emails, or am I being inclusive? And it's easier when you have an email because you can re-read it and think about it, and so because I've been very, very thoughtful about my electronic communication, it's been helpful in general, just change my mindset and I've gotten used to it, I've changed everything to have pronouns, where I can. There are some limitations, like I think if you have teams, Microsoft Teams, you can't have pronouns there, but on an email signature on my Instagram, on my LinkedIn, I'm trying to just be very mindful and just have it everywhere, so that it's not a new concept for me it's something that's just ingrained in who I am moving forward in my part of my identity.

 

0:39:01.3 DS: So we have a great question in the chat to move along with the hereditary topic that we're discussing, but Julie asked if we could, someone could share a sensitive way to discuss cancer screening for organs a patient doesn't identify with, and how that could look in practice.

 

0:39:26.7 DS: I definitely welcome other people to comment on this, but one thing that I've been trying to really work on is so much of BRCA discussions, particularly have been very gendered in the past, so things like males with BRCA mutation have such and such risk and females with BRCA mutations have such and such risk. So I've been trying to use a more inclusive language. People with ovaries have an increased stress and then talk more about that because even cisgendered females, they might not have their ovaries anymore, so it is language that I've been trying to use more of. So that's one of the things that I've been doing and then kind of giving a little warning in the beginning if I feel that it's necessary to say like, Hey, I know you might... This might not be particularly affirming to talk about your ovaries, but it is important to talk about them in order for us to take the best care of you or something like that, is kind of the approach that I've taken, but definitely open to hearing other people's thoughts on that.

 

0:40:27.9 DS: I mean, most trans people I know are very aware of the organs and the parts that we have, and we're not in denial about what's going on with our bodies. So it's more, I think it's more important that we're using things like people with ovaries or... So that you're not saying it's just women who have this specific organ, it's all these people, and now I know that that's my section, 'cause I know what I have, it doesn't matter. What's on the outside? Not like, if we just stick to people with a specific organ, it's not offensive in the way that people might be concerned that it is.

 

0:41:19.0 DS: There were some good examples that you had when it comes to medical management conversations with hereditary cancer risk for gay men, or there was another example that you had brought up to me about a lesbian patient who did not wanna get reconstructive surgery, you wanted to share those.

 

0:41:38.5 RF: I just saw that question in the chat about support groups that are more affirming for more inclusive, and I was reading a case study where it was a lesbian who had a BRCA mutation and she opted to have reconstruction, but she decided... Sorry, she opted for the mastectomy but decided not to get reconstruction, and so she went to a support group for BRCA patients and felt shamed because he wasn't getting reconstruction, and some of the women that were part of the groups that, Well, you should really involve your husband in this decision, and it was such a turn-off to her that she stopped going to the support group, and so... That was one of those things that I have read about. Also, this topic really became interesting for me, not in a personal way, but just sort of in a medical way, because Karen and I used to work together at Sloan Kettering, and I had a patient who had Lynch syndrome who identified as a gay man, and so when we were talking about the possibility of getting a colectomy or the types of surgeries that you get with Lynch syndrome, it became apparent that a lot of gay men associates receptive, anal intercourse as part of their identity, and so to talk to somebody about a colectomy without taking that into inventory, is probably not the best way to approach it. So I think that those were the two comments that you were referring to, Lauren.

 

0:43:11.5 LS: Yeah.

 

0:43:12.2 KH: Are there any, are there any patient support groups that you find that are more opening or welcoming, or is that, is that an area that we as a professional society need to partner better? 

 

0:43:29.0 DS: Yeah, that's a good question.

 

0:43:30.0 Andi: Danielle and I got asked this question the last time we gave a talk about this together, and the last time I checked, I could not find anything. Have you had any luck since then? 

 

0:43:41.5 S?: Yeah.

 

0:43:42.1 DS: No, we keep getting that question actually more and more, so I feel like it is something that as organizations we should do better.

 

0:43:50.8 DS: Have there been any discussion with some of the existing standard hereditary cancer, cancer organizations like force or anything, do they have... Has this been coming up? Has anybody seen the need for some... At least, if not its own organization, at least having working groups or committees or something as part of those existing organizations like bright pain, tiger lily, all these. Because they seem to be big on diversity, so... Yeah, maybe there's a gap then, if there's not much going on.

 

0:44:25.7 RF: I think that NSGC and particularly the cancer say, has been talking about having a LGBTQ-focused like sub-group or sub-committee or working group, I can't remember what group they landed on, but this could be a great, that could be a great project for that group of people to kind of interact with some of those support groups and see if they can do better.

 

0:44:50.3 DS: It brings up that comment that I even just brought up about the diversity, do people see this as a diversity topic or is it... I guess, where do people see it in the grand scheme of things because... Yeah, clearly a lot of organizations are trying to have a big diversity focus, and honestly, the way this call today came out of is because we had a talk on diversity on Myriad Oncology live, I don't know, a couple of months ago, and then we started planning this because we felt like this topic, in particular, didn't get covered nearly to where it should be, so I'm just curious to know where people think it falls in everything.

 

0:45:34.5 DS: I personally feel like it falls into DEI, as inclusivity, that's where I see it at least.

 

0:45:51.5 RF: So I really struggle with this because I feel it falls under the I, but I feel if we parse it out of our whole human collectivity as humans, it makes it seem like a different population rather than... We're all in this together. Does that make sense? I'm not articulating it very well. But everybody needs to be included in this conversation, and if we start parsing out different groups which are not treated appropriately, I completely understand that. It seems like it segregates it even more.

 

0:46:36.6 RF: Does that, I mean I think when inclusivity is done well, it makes things better for everybody, I think that increasing things like accessibility tends to make things accessible for everybody, I think that increasing your awareness of how to address people respectfully makes everybody feel more respected. So I think I kind of see what you're trying to say of not othering folks too much, and I think that the main goal here is to try to change our culture and the language that we use and the practices that we use, so that we're acknowledging that the gender binary does not exist and that there are people that fall all over the spectrum, and the way that we should approach people should be without any assumptions about how they identify or what organs are in their bodies necessarily, and I talk about misgendering people and that cisgender people get misgendered too, there are some cisgender people that get misgendered all the time because of the way they look or the way their voice sounds, or the name that they have, that's something that they experience too, so we're trying to make life better for everybody. And we are focusing on trans and non-binary people and also other members of the LGBT community because there are certainly things that affect them a lot more than straight or cisgender people, but in doing so, I think that we just make things better for everybody. Does that kind of address your question more or less? 

 

0:48:06.2 RF: It does, it does. And my crude analogy is, historically, you know we parsed out genetics away from medicine, away from healthcare, and you have to be this exceptionalist person to be able to take care of somebody that has a hereditary syndrome, and now we brought that back into the realm of medical care. Everybody needs to know about genetics because it's the normal part of our biology, and everybody needs to understand it, so it's...

 

[overlapping conversation]

 

0:48:36.1 DS: Pretty important, it turns out, actually, 'cause that's just not everything.

 

0:48:38.3 DS: Exactly, and so in some pieces of my brain, I think of some of the behaviors around this being very similar to that, and I know we'll get to that world that we're... And now when it comes to hereditary cancer genetics, and genetics in general, thought I'd use some similar analogies there. Different.

 

0:49:02.5 S?: I'd like to jump in with a segue for a moment, if I can just 'cause it popped into my head about supporting non-binary minors, right, because this is really important in terms of disclosing risk, supporting parents who want to talk about risk to organs, to children who are maybe just coming to a realization about how they feel about their bodies and about gender, and I referenced briefly that case where there was a 13-year-old who was starting to voice that he did not identify with his female genitalia and emerging puberty, and then the parents were afraid that this was because mom had had to have a bilateral mastectomy and that the child was afraid of having to go through this as well, and so was rejecting the female body, when it had nothing whatsoever to do with this, that the child was coming out as trans to the parents in this process, and so then conversations had to happen about how was... Talking about things like hormone suppression, or what was risk-reducing surgery going to be like when the child had already started to think about gender affirming surgery, because the two procedures are surgically different.

 

0:51:00.9 DS: I think that putting some more attention into what the issues are gonna be for non-binary kids themselves and what these conversations are like with the parents, I think... I haven't seen very much of that, but when it's right in front of you, it goes deep really quickly.

 

0:51:28.5 RF: And I think one of the common themes that you'll see on the GC Plus service, is that genetic counselors feel really wildly unprepared to have these conversations for multiple reasons. One is just comfort level and talking about things like pronouns and, "How do I ask it in the best way?" and things like that, but then also there's just no data on cancer risk in this population, and GCs love data, right? We love data, we like to do our research and go into a session and be really prepared, so it's a little bit of an uncomfortable feeling for a GC to go into a session and feel just very unprepared in multiple ways. And I think one of the things that we can continue to do is have discussions like these, and hopefully our NSGC session would be helpful just for genetic camp counselors to feel a little bit more prepared walking into these sessions. And it looks like Kim Zayhowski is on and I think that was your whole thesis, and I think I've read your paper several times, so I didn't know if you wanted to add anything about GC's comfort levels, or anything that you learned through your thesis when you were talking to GCs about this. Sorry to put you on the spot.

 

[chuckle]

 

0:52:39.2 Kim Zayhowski: Yeah. You know...

 

0:52:40.2 Andi: Hi Kim, thank you.

 

0:52:42.0 KZ: Hi, everyone. I feel like a lot of the discomfort, yeah... 'cause I feel like, especially in cancer, people are so often talking about, "Okay, what's cancer risk look like for someone, a cisgender man versus a cis gender woman when they have a BRCA mutation and how does gender affirmation really affect that? How does top surgery affect that if top surgery doesn't take out all breast tissue, then what cancer screening might these folks still need?" Or "Should this surgery change based on a genetic testing result?" for example. Or something that GCs were really uncomfortable with is, a lot of doctors were referring people who are considering gender affirmation hormones over to genetics because of a family history of cancer, and a lot of the patients were concerned that they wouldn't have access to the hormones if they had a BRCA mutation or something, but we don't actually have data that says people who have a hereditary cancer which shouldn't be on hormones.

 

0:53:39.2 KZ: We don't even have good data about how much these hormones affect people's cancer risk, 'cause most of the hormone data is based off birth control use in cisgender women, for example, or testosterone use again for cisgender men, but not actually for trans or non-binary folks, so I think... And so it's like, "Okay, you have a BRCA mutation. It's an 80% chance for a woman and 10% chance for a man or whatever to get breast cancer." What's that actually mean for our patients? "Might be somewhere in between 10 and 80" is not a comfortable number. "10 to 80%, make decisions based off that," so I think, yeah, the data is a huge issue and yeah, just genetic counselors just being... Not having practice asking these pretty basic questions about pronouns, or, "Is that the name you go by?" or "Do you have medical records under a different name?" Things like that.

 

0:54:36.1 DS: And I think I was surprised by how comfortable the trans patients that I've had so far... They've just been like, "Yeah, of course you don't have data on this." They're not... They haven't experienced a patient who was very distressed by the lack of data. I think that's something that they probably experienced in many capacities, so I was nervous to say we don't have a lot of data, but now I'm not nervous to say that anymore because of the reaction that I've gotten back from patients. And I think one thing that I always also try to say is, "We're not trying to be a barrier, you should do what's best for your gender affirming care, I'm just trying to help you make the most informed decisions or give you information to help guide those decisions," but I've definitely had patients, especially when it comes to trans women who are very hesitant to do any sort of genetic testing because they don't want it to stand in their way of estrogen therapy, for example.

 

0:55:29.7 DS: And so it's been kind of interesting to see that I tend to go really small or not at all test trans women, versus trans men might be more looking for a reason for their insurance company to cover the surgeries that they wanna have as part of gender affirmation. So they're more likely to white glove the information, and then trans women that I've seen have been hesitant to do any sort of genetic testing, so that's kind of been something that I've been noticing. But obviously that's all anecdotal and I don't have any data at all to go off on that, but that was just something I've been noticing in clinic.

 

0:56:09.4 RF: Kim or Danielle, or Andi, or any have modified their curriculum to start incorporating some of these concepts? 

 

0:56:19.9 DS: I know a lot have... Because there's two papers out on this, me and Tala Berro, if any of you know Tala, have been asked to do a bunch of presentations on specifically cancer risk relating to trans and non-binary people, and I think it's something that programs are becoming a lot more aware of, especially in today's climate. And so I'm hopeful that it will become more integrated. Yes.

 

0:56:47.2 DS: That's great. Well, I know we're at time. Clearly, I have a million other questions. I'm sure a lot of people do. So we're definitely gonna need to revisit this topic [chuckle] at some point on Myriad Oncology Live, above and beyond what everybody is doing in their communities and nationally and internationally. I wanna say thank you so much, Lauren, thank you so much, Rob, really, stewarding the discussion, putting all of this together, and then our guests, Danielle, Chris, Andi. We have Karen, Christina. No, thank you all. And Kim, sorry you got put on the spot there [chuckle] at the end, but that's Myriad Oncology Live, you get put on the spot, it's good. I appreciate what you're doing out there and... Yeah, no, this was a great discussion and I hope everybody has a great rest of their day and next week again... Yeah, feel free, jump on. If you google Myriad Oncology Live, you'd find the registration. We'll have Eduardo Vilar talking about Lynch Syndrome and research behind colorectal cancer, really prevention and kind of the next era, hopefully to come and really after identifying someone, what we can do to help that person stay cancer-free. I appreciate it, and have a good rest of your day.

 

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