Myriad Live - Let’s talk LGBTQI+ in the clinical setting!

Myriad  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 https://myriad.com/live/ for a list of dates, times, and subjects.

References for this episode:

https://fenwayhealth.org/the-fenway-institute/education/the-national-lgbtia-health-education-center/

https://transcare.ucsf.edu/guidelines

BRCA care: https://journals.lww.com/greenjournal/Fulltext/2021/12000/Creating_Breast_and_Gynecologic_Cancer_Guidelines.16.aspx#:~:text=As%20breast%20surgery%20often%20leaves,rather%20than%20traditional%20chest%20masculinization.

Free course about teaching LGBTQ+: Healthhttps://mededucation.stanford.edu/courses/teaching-lgbtq-health/

https://fenwayhealth.org/the-fenway-institute/education/advancing-excellence-in-sexual-and-gender-minority-health/train-the-trainer-course/

https://www.kff.org/other/issue-brief/youth-access-to-gender-affirming-care-the-federal-and-state-policy-landscape/

https://www.aclu.org/legislation-affecting-lgbtq-rights-across-country

Transcript

[music]

0:00:13.3 Dr. Thomas Slavin: Welcome. This episode of Inside the GENOME is a recent recording on Myriad Oncology Live, a webinar hosted by me, Dr. Thomas Slavin, Chief Medical Officer for Myriad Genetics. 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 Live for a list of dates, times and subjects. I look forward to exploring the world of genetics with you all.

0:00:40.6 DS: Hello, everyone. Welcome to Myriad Live. So pleased to see everyone today. I'm just trying to change some screens around really quickly. We have an exciting topic today, and if I can pull up the correct screen, [laughter] I won't be able to... You should see the Myriad Live right now, and yes, this is what happens when I bounce around different computers. Sorry about that. Strange. All right. I think things are hidden. All right. Having some technical difficulties. All right. But I appreciate everyone coming on today. We are privileged to have a special guest with us. But a little housekeeping first, here, we like to keep everyone in suspense. We have, few we have today, and then in two weeks we have, Holly Peterson talking about chemoprevention for breast cancer. So if you haven't registered, please do today.

0:01:47.8 DS: We're gonna be talking about, LGBTQI+ in the clinical setting. So very exciting. We did address this. We had a similar discussion with a lot of different folks around a year and... Maybe a year or a year and a half ago. So I believe that is on Inside the GENOME podcast. I think it was one of the first ones we... Yes, it was one of the first ones we started keeping a record on. So, if anyone, after today's, wants to go back and look at that, I'm just looking where it is. Here, this one, it was posted May 24th, 2021. So yes, a little bit longer than a year ago. But that was also a good podcast kind of on a related topic.

0:02:40.3 DS: That was all focused on, mainly hereditary cancer treatment of BRCA1 and 2 carriers, largely. But we had a lot of special guests. I encourage people to look at that. And then if you haven't seen the podcast, clearly, as you see it from me scrolling around, there's a ton of content on here. So you can fill your summer days with all this. [laughter] So anything that says Myriad Live, those are from... We do record these and they're kept for, the audio at least, kept for posterity, and you can listen to those. And if they don't say Myriad Live, like we just posted the OlympiA study, I just sat down with Judy Garber and we talked about the study and how it went, the concept and how it's changing the practice of breast cancer care. And so yes, take a peek at that if you have not.

0:03:31.4 DS: Without further ado, I am pleased to welcome Hannah Lauren. Oh, people may also see that I'm looking at odd screens and things. I'm in [chuckle] my other office actually at Salt Lake City, so I have a different computer set up here. But today we're privileged to be welcomed by Hannah Lloren. She is a reproductive genetic counselor at Brigham and Women's Hospital in Boston. So excited to have her on today. She has expertise in this field. Also, we have Shelly Cummings, who will be helping with the chat and helped to facilitate Hannah coming on today. So thank you, Shelly, as always. And with that, I'm gonna stop sharing my screen here. Yes, so this helped my view out greatly. [chuckle] So Hannah, tell us a little bit about, your background, what got you interested in looking at these types of... The parts of clinical medicine related to LGTBQI+.

0:04:42.6 Hannah Lloren: Yeah, absolutely. So I'm of course, as you mentioned, a genetic counselor by training. I currently work at the Center for Fetal Medicine and Reproductive Genetics. So my day-to-day is really counseling on anything from complex fetal anomalies to pre-implementation genetic testing. But a lot of my work also has to do with the identities that people have and their conceptions around what family means, what parenthood means. And I find that that really intersects a lot with the LGBTQIA+ community and how we can provide better affirming care for those folks. I think that comes... My professional interest in that area comes out of a number of different reasons and experiences that I've had. First and foremost, I identify as a queer and cisgender woman, and so I think that my experience, being in the LGBTQIA+ community, has allowed me to have a lived experience as someone who is queer and going through the healthcare system, realizing the frictions between how I identify, how I want to be affirmed and how providers and healthcare institutions treat patients.

0:05:53.4 HL: I think another reason that, or another space that I've really come to appreciate, or another pattern that I've really come to appreciate being in the healthcare field is just how pervasive cisnormativity and heteronormativity are in this space. Cisnormativity being the assumption that everyone identifies with the sex assigned at birth, that that is binary, and that their gender identity is congruent with that. And heteronormativity, the assumption that everyone is heterosexual. And there is so much in reproductive genetics, and also in healthcare as a whole that really is built around those assumptions, and being in this space, having this lived experience as a queer person, but also as a clinician, has, I think, made me really realize how much work needs to be done, how much we need to uplift the voices of individuals in the LGBTQIA+ community, particularly trans and intersex individuals, in order to better accommodate our systems and learn how to affirm those individuals to correct the healthcare disparities that are so present within that community.

0:07:05.4 DS: Yeah. And what do you think are... Since you've been really studying this, what are the kind of things do you like to convey to people so they can better take care of their patients? 

0:07:18.8 HL: Yeah, there's certainly a laundry list there. I think there's things that we can do on a and our interpersonal level and a systemic level. And I'll start with the interpersonal level. I think that, when a patient enters into a clinical space, there are going to be a number of different interactions that are opportunities or are opportunities to better affirm that patient in their gender identity, in their sexual orientation, in their intersex identity, and that starts really at the time that a patient is looking up a clinic or looking up a potential medical provider. Sometimes the title of a clinic says something like a Woman's Health Clinic or, the ways that a clinic or a healthcare service is advertised is really gendered. And that can be a source of gender dysphoria for individuals who gender identity does not align with the gender that that clinic is catering to, and also might cause them to, as with many LGBTQIA+ patients, not choose to go to that clinic or seek out that healthcare because they might experience dysphoria.

0:08:50.3 HL: And then when that patient actually makes it to the clinic, they might be interacting with administrative staff and inclusive... And forms that don't make space for their gender identity or their family structure or their sexual orientation. And so that's another opportunity where forms can be modulated to allow for a patient to self-identify with the organs that they might have, or note their gender identity or note their pronouns. And then that information can be used by an administrative staff to refer to that patient in the pronouns and with the honorifics that they want to. So those are just a few different ways that even in the initial encounter, a patient might experience a failure to trust the healthcare providers that they are seeing, or there might be an opportunity for that patient to feel trusted and to feel affirmed, and to know that the clinic staff that they might be interacting with is competent in trans issues, competent in LGBTQIA+ affirming care, and might make them more likely to be honest with their medical history, be trusting of the provider to provide them accurate medical advice and overall just build a greater client-clinician relationship.

0:10:30.0 HL: So [chuckle], I fear if I answer the entirety of your question, we might be here for the next 20 minutes. So I'll just stop there, just with kind of a layout of how a patient is first interacting with a healthcare space.

0:10:45.1 DS: Yeah. No, that's good. And let me pause there for any questions. If there's anything on anyone's mind or people wanna voice anything similar. I see Sherry wrote in the chat about the men with breast cancer.

[pause]

0:11:07.7 HL: Yeah, I'm happy to answer that question directly. I'm seeing that there is a question about gay men with breast cancer and transgender men with breast cancer and how clinical care can be improved for that space. I think that is a real unfortunately a very clear example about how healthcare can be unnecessarily gendered. When we think about breast cancer advocacy and even the clinical spaces in which mammograms and breast oncologists work... I'm sorry, mammograms are done and in breast oncologist work, those spaces can be very feminised. Again, there can be names like women's health clinic in the name, and many of the support groups for breast cancer can be very gendered, very feminised. And when I say the word feminised, I mean that there are characteristics of a space that are indicative of a very feminine identity, pink colors, advertisements that depict all women. And I think this can be for patients who are experiencing a diagnosis like breast cancer that requires... That is very difficult one, requires a lot of treatment. It requires that therefore a lot of psychosocial support, finding other individuals and finding supports that are right for them can be difficult. And so I would point out that there are two organizations for queer folks who are experiencing breast cancer.

0:13:10.8 HL: There's one, Live Through This, which is a patient foundation that... And also a place where... A website where a lot of stories of queer people who are going through cancer diagnoses exist. And then Queering Cancer, which is another patient foundation, which, in addition to support groups, also includes a lot of great educational resources for queer folks who are going through cancer, and especially for transgender men who were assigned female at birth, who are going through a breast cancer diagnosis of their own. So I think there are many spaces where clinicians can partner with these support groups to connect to their patients, and also ways that we can learn from these support groups, these patient foundations to make our clinical spaces, the way we talk about breast cancer or specific diagnoses, less gendered and more inclusive of all people who might experience a diagnosis like that.

0:14:20.3 Shelly: Hey, Hannah. We have a question from Beda. She's gonna unmute herself because it sounds like it might be just easier than to type out. So Beda, can you share with us? 

0:14:31.7 Speaker 4: Yeah. Thanks, Shelly. Hi Hannah. Yeah, so I have a question. I've more recently have a work with patients that identify as transgender where I knew in advance because of the sort of use of pronouns and other things within our medical records system, which have been helpful. And I'm wondering if when we have like our medical office staff, I've had times where I've noticed they were using the wrong pronouns for those patients and so I've corrected it. But I'm wondering if it's better to almost alert them in advance to make sure that they're sort of using appropriate pronouns or if I shouldn't do that, because it's in a sense like othering the patient in some way. Do you have any opinions or thoughts about that? Because I don't want patients to feel like we're making a big deal out of them, so to speak, but I want to make sure that it's the most sort of comfortable environment they can come, if possible, and I'm not sure what you think or rather seem to be the best approach.

0:15:45.9 HL: Yeah. Oh, I really appreciate that question, Beda, and I think it's such a thoughtful, one making sure that we are creating an affirming space and also not making a patients feel as if we are only seeing their transness. My personal stance on this as you know, again, I'm not talking of... Speaking from a place of someone with trans experience, but just from talking to trans folks, as well as looking at the literature about the experiences of patients of trans patients in healthcare. What I really feel is that it's important for a space to be affirming, affirming even over inclusive. So when I think about inclusive, I think about, Okay, gender neutral, everything, potentially using they/them pronouns until corrected otherwise.

0:16:40.5 HL: But if a patient has already disclosed what pronouns they use, and let's say, for example, this is a trans man who uses he/him/his pronouns, then I think that creating an environment in which that individual feels as if their gender identity is seen and validated by everyone in the clinic, or everyone who they interact with, can be a really affirming experience, and I think there are... Trans people, all queer people are aware that we are just swimming in a sea of cisnormativity and heteronormativity all the time, and that it does take a mindful deconstruction of those assumptions in order to provide affirming care. And so I think in that case, I think it would be very appropriate to talk to clinical staff, especially for folks who you think might be really just continuing to... We're all continuing to learn, but folks who might be a little bit more on the early side in understanding LGBTQIA+ identities, or how to best provide that care, specifically talking to those people and using it as a opportunity to educate colleagues about how to most effectively validate someone's gender identity, how to normalize it for themselves.

0:18:15.2 HL: So [chuckle] again, going off and along with an answer, but Beda, I think it's very appropriate for you to have that conversation. And I think it's clear from that question that... We are thinking about all the different ways that we can better provide gender affirming care, starting with the first couple of interactions that a patient has.

0:18:38.7 DS: Yeah. And have you seen... That was a good question. I mean, and kind of a follow on, I mean I don't know if others or Hannah, I mean do we have any experience with training programs for like MAs? I mean, even, you know, MPs, GCs, I mean I can tell you from medical school I didn't get any specific training. And that wasn't that long ago, so I know it's a fast moving field, but you're starting to see it it move into some of the training of healthcare specialists and just not even providers but just staff.

0:19:11.0 HL: Sure. Yeah, I think it's there's such heterogeneity across all training programs. I think the resources are certainly out there for anyone in the audience who's thinking that they might want to dive deeper into this topic and even pick out educational models that are more specific to their line of work. I would recommend the LGBTQIA+ health education center or health education... I think it's center. And That's affiliated with Fenway health. They have a lot of really fantastic modules and resources that are specific to let's say primary care or Oncology care or prenatal care. And I would really encourage folks to go in and seek out those resources because they could be very good specialty specific resources. But I think in terms of the integration of this into health programs I would honestly say that there is a sparseness of clinicians who can speak on these topics and they're already quite stretched thin.

0:20:31.9 HL: And so I think that there has been a pattern that I've observed with a lot of training programs and I can speak for the genetic counseling programs. Most specifically not as aware as of this pattern and in other training programs, but a sense of asking the LGBTQIA+ students in the cohort to do lectures for their classmates on this issue. So almost taking that the person who is LGBTQIA+ identified and almost having a unspoken assumption that they will be the ones who take on the burden of educating their classmates. I think this is a step towards the right direction. I do think folks who are talking about LGBTQIA+ inclusivity it's very good to have lived in personal experience in that community. 'Cause otherwise I think there can be mistakes and assumptions that are made.

0:21:42.4 HL: But at the same time, speaking about this issue does require a level of clinical expertise that sometimes students don't have. And so I think that it is important for clinicians with LGBTQIA+ inclusivity expertise to be the ones who are providing this education and also for us to make use of the resources that are already there. Well, another challenge in this is that the field is moving so fast. Even in the past couple of years, we've seen more research on the experiences of the intersex individuals, whereas that research was really lacking in the past the research that centers, the experiences of intersex individuals and allows them to speak or uplifts their voices in their opinions on their healthcare that they received. And so I think even as this information is integrated into training programs, continuing education is important because this field and even how LGBTQIA+ identities are experienced and the terminology is changing rapidly. So continuing education is so important.

0:23:07.1 DS: Yeah.

0:23:07.9 Shelly: So Hannah, I have a couple of questions. One is from Erin Schwartz and she was interested in knowing if there are any standardized resources like for intake forms or patient forms for the OBGYN setting. And then, I'll let you answer that and then we'll go to the next question. Just to keep it simple.

0:23:30.3 HL: Yeah. Great question. So I, with that one I will also reference again the Fenway Institute, which is affiliated with the national LGBTQIA+ health education center. I think Lauren put the link in the chat. So thank you so much Lauren, that has great information on how to best collect what we call SOGI information or sexual orientation, gender identity. But I think the baseline standard of intake forms for the OBGYN setting is asking pronouns, asking gender identity, asking sex assigned at birth, even asking a organ inventory. So does someone still have their uterus still have their ovaries? What organs does that person have? Because we can't assume that for example, all women have their uterus or all women don't have a prostate. Not that someone who's assigned male at birth would be visiting a GYN office, but making sure that the gender identity or the sex assigned at birth is not the only tool that's relied on for a clinician to take an organ inventory and base their... Their patient's risk profile and, their counseling.

0:25:02.5 Shelly: Thank you. And then the other question was for those LGBTQ+ allies, what would be your recommendation on, what we can do to further this? Because we have a, you know, different experience and we can't speak to it directly, but we wanna be very supportive, of the community. So what would be your advice for that? 

0:25:29.5 HL: Yeah, I think really just being open and being aware of how much of our healthcare institutions are, the way we interact with each other. And our language is based on the assumption that sex is a binary, gender is a binary and that everyone is straight because those assumptions go so deep. And so I think strip... Simply being aware that not having a identity under the LGBTQIA+ umbrella might make one less aware of how those assumptions are integrated into the way that we view the world and the way that our world is built. So that's one. Two, what I've found really helpful as someone who really wants to be a, an effective trans ally and ally to the intersex community is really listening to the experiences of people and patients in... With that hold those identities in the healthcare setting. So for example, something that I, have done, knowing that I am working with a lot of pregnant patients is to, find stories and this can be on YouTube.

0:26:55.3 HL: This can be from webinars, but find stories of, individuals who identify as non-binary and trans and who have gone through pregnancy. We shouldn't be asking our patients for this, for their experiences or even our trans and, gender diverse, friends and colleagues for these experiences. But there have been many individuals who have offered up their story on very public facing platforms for others to learn. And I think that can be, one such a great way, of building empathy, for the experiences that gender diverse and intersex and trans people might experience in healthcare spaces. And two, just giving our minds, which have been trained from birth to expect that gender is as a binary and sex is as a binary, to provide our minds with examples of individuals who are, living outside of those binaries so that we can better build our openness, uncover our implicit biases and really expose ourselves to the richness of gender that's experienced, by individuals who identify as gender diverse.

0:28:24.0 DS: Yeah, that's great. I was gonna ask... And Thanks Lauren for putting, the Fenway Institute. I was looking a little at the website too. Is there any other professional society guidelines that are... That you'd recommend people follow or that, you know, might be in development? 

0:28:43.4 HL: Yeah, the UCSF center for transgender health has, I'd say probably the greatest, repository for literature on best practices for transgender healthcare. I would particularly for the, oncology providers in the audience point towards, that resource as a way to, oh, thank you so much, Barry, for linking that.

0:29:13.7 S5: I'm with Everytime From that region.

0:29:16.2 HL: And those guidelines are, I think really the most, up to date and comprehensive and acknowledge too, that, every gender diverse person, and really every person has a, different level of... Or might be on a different place in their social transition, in their medical transition. Some trans people might opt for hormone replacement therapy. Some trans people might opt for, surgery around reproductive organs or top surgery or breast or chest surgery and the UCSF transgender, healthcare guidelines, for cancer surveillance do such a good job of, talking about each nuance of someone's healthcare or gender affirming therapy journey. And so I would recommend those. I see Beda asked a question if I know if they plan to update them. I, quite honestly do not. But I... Since there has been, some really impactful studies done since 2016, I would hope so.

0:30:32.5 Shelly: I just wanted to add too. And, Hannah, thank you so much, for the presentation and for coming on, that the NCCN does have disclaimers. They don't specifically talk about the management and recommendations when it comes to patients that are part of the LGBTQIA+ community. But I have it in front of me and basically, they call out that the NCCN recommendations are developed to be inclusive of individuals, of all sexual and gender identities, to the greatest extent possible. And on this page, the term males and females refer to sex signed at birth. So they do have a disclaimer and some other professional societies also do have disclaimers kind of along the same lines.

0:31:14.9 DS: Yeah. And Lauren's been helping with our internal efforts to review all the forms and [laughter], make sure that we're following, these types of guidelines. I don't know if you wanna elaborate there at, on your quest Lauren.

0:31:29.5 Shelly: Yeah [laughter] Yeah. So, it's been really interesting just trying to create, a more inclusive, environment for all patients. And we're doing that in, in many different ways, but on the vein of gender inclusivity and gender and neutral language, we're trying to, make sure that our materials don't have gendered terms or where we can't change it, that we have disclaimers like NCCN changing PRF to be more inclusive so that we're providing an environment that all of our patients can feel validated and we're not othering any of our patients. So that's been a work in progress that we are have been doing. And we have people that are part of our newly formed Myriad Pride Alliance that are part of our working group.

0:32:10.4 Shelly: But an important point that Hannah brought up is, we wanna make sure that we're being advocates and allies and that the people that are part of these communities are not just the only ones that are teaching and, we're learning and... Doing the research ourselves as well. So that's been a big push doing education and making sure that we're being accurate. There's also a really great course that I took through Stanford. It's free, it's online. It's one point, I think, five CME. It's a course about, teaching, and incorporating, LGBTQ+ health from a faculty standpoint. So it's not really genetic space, but it was pretty cool.

0:32:53.2 Shelly: And I, and I actually learned quite a bit, and it helps you kind of just wrap your brain around different scenarios and things, and it just puts you in a good frame of mind when you're trying to create, inclusive care in general. So I can send that in the, chat here.

0:33:08.1 S5: So along those lines, Lauren and Hannah, and to TJ's question, I noticed on the Fenway Institute, they had a course in March, kinda a train the trainer course for all healthcare professionals on talking about Sexual and Gender Minority Health Education. So hopefully that's something that can be repeated and we can stay on top of that and do some kind of, notification out to our providers that we work with to raise awareness in that way.

0:33:43.4 Shelly: Yeah. Great point. I'll look into it further and see if, there's anybody we can reach out to see if they'll be doing it again next year and how we can be involved in, pushing that out.

0:33:56.9 DS: What are other countries doing in this regard? I mean, where do you think the US sits right now? 

0:34:06.0 HL: Well, [laughter] I think that's a loaded question. I think that, recently we have unfortunately seen a lot of Anti-Trans Legislation passed, and including the criminalization of gender affirming healthcare or criminalization of, and liability risks for providers who are providing that care. And so I think the legal landscape, I think... Trans, or LGBTQIA+ discrimination has legal discrimination has existed for a long time in the United States.

0:34:51.1 HL: And I think recently, the US has really failed, a lot of its trans and gender diverse citizens. So I think that the legal landscape makes it somewhat difficult, for providers, even providers who want to provide affirming care to do so. I think that other, this isn't something that I've particularly studied or gone into depth, but I just think that other countries are making more linear and consistent progress, in protecting trans rights in advancing gender affirming care. And I think I have not seen that same level of commitment in the US. Of course, we're talking about a vastly heterogeneous group of providers and states and, and, layers of legislation. But I think that's just my general sense, from looking at the international landscape of this issue.

0:36:07.6 DS: Yeah. And can you... I didn't, and I might not be up to speed, but the criminalization comment was that, is there some of the more specifics there? 

0:36:18.5 HL: Yeah, I think there's, just several states that have passed bills that either make it, a very difficult, for trans patients to access gender affirming care because of, there might be no requirements for insurance to cover this. And at baseline too, a lot of insurance, coverage is tied to one's, legal sex, registered sex. And so if someone is going to change their legal sex, then it can be difficult for them to obtain certain, healthcare services that might be related to their sex assigned at birth. Just in general too, we know that trans individuals, especially trans individuals of color are less likely to be employed, in spaces that would provide them with adequate healthcare coverage or I'm sorry, health insurance coverage.

0:37:28.0 HL: And so there's just layers in terms of socio-economic status, employment status, insurance status, that make it difficult to obtain gender affirming care. There are states including California that have mandated for insurance to provide certain levels of gender affirming care. And I think that's what we really need unilaterally to make inroads in this access issue. But, unfortunately a lot of states have not done that.

0:37:57.7 Shelly: Yeah. It's four states on June 1st, TJ, enacted laws, Alabama, Arkansas, Texas, and Arizona on restricting, some of this in the youth. So it's gonna...

0:38:11.2 DS: I know. I know.

0:38:13.4 Shelly: Yeah, it's pretty quickly happening.

0:38:16.6 S4: The ACLU has a pretty thorough website that lists all of the different bills that are either in session or previous. And they have it organized by different topics like restricting healthcare for transgender youth, single sex facility restrictions, excluding transgender youth from athletics. I can put that here. There's unfortunately quite a bit of anti LGBTQIA+ bills out there. They also list some bills that are equality bills, so those are positives, but there's quite a few anti-LGBTQIA+ bills that are active.

0:39:03.8 DS: Yeah, no, thanks for sharing that. And I guess that gets to what I was thinking is, you know, wishlist. Hannah, what kind of things... I think you alluded to some of this, but what do you think needs to happen in your mind in a perfect world to see the effects into healthcare. Do you think we're headed in the right direction? Do you think there's some crucial things that are needed to speed things up? 

0:39:36.8 HL: Yeah, I think there are certainly positive and... Points for optimism. I think that the visibility of trans and gender diverse identities has really improved over the last decade. We're seeing more individuals, especially individuals from the gen Z population identifying as trans and gender diverse. And we can really attribute that to the... How narratives are changing in mainstream media. And so I think there's a greater conversation about how gender diverse individuals exist in the world and normalizing gender diversity. But I think at the same time, we're seeing a backlash against that with these, anti-trans laws that Lauren and Shelly alluded to. So I think that the mainstream narratives are changing, I think, in a positive direction. But that's resulting in a backlash.

0:40:55.9 HL: I think from a healthcare space, I think what I would really love to see more of is research on the effects of gender affirming care. For example, there isn't a strong characterization of when hormone therapy is introduced and how that affects the... It's one's risk for certain cancers, particularly breast and prostate cancer. There's been two into pretty large studies that were done. But I think we need more nuanced information about what types of hormone replacement therapy and when that's initiated and how that affects cancer risk profiles. I think one thing that I see repeated again and again from a trans and gender diverse patients, is that it's really hard to make decisions about their medical care when their doctor is saying to them, "I don't know, and medicine doesn't know." And so having more information, having more robust studies on gender affirming care and uplifting the voices of individuals who have made those decisions and how they feel about those decisions, so that they can be brought back to that initial conversation with a trans patient who's trying to decide what's best for them.

0:42:35.9 HL: What have other people chosen? What have their experiences been? And what does medicine know about the risks and benefits? This is not to say at all, that we should be restricting gender affirming care. I think it is very life saving and many... It is imperative that this be accessible. But part of that principle of autonomy is also providing patients with the best information about limitations. We just don't know that yet. I think, and when thinking outside of the trans community, I'm also thinking about the intersex community, which I think hasn't yet experienced the same change in mainstream narratives that we've seen for trans folks. I think that people who identify as intersex or have variations in their sex characteristics, there's still such a level of stigma and there's still a normalization of doing or those early genital surgeries to correct or fix ambiguous genitalia.

0:43:48.0 HL: And we know from intersex activists for, from individuals who are survivors of those surgeries, that that really feels like a huge breach in their autonomy and can cause gender dysphoria and other mental health challenges later on in their lives. And so I think a change in the narrative around what it is to be intersex from a pathologizing lens to a celebratory lens, knowing that sex is not a binary and that their differences of sexual development are so normal. I think that is a shift that I would really love to see in the genetics field, in the healthcare field, in society as a whole. So those are just a couple things on my wishlist.

0:44:35.0 DS: Yeah.

0:44:36.2 HL: It is a very long wishlist, but those are changes that I think are really important and ones that we should all push for.

0:44:45.0 DS: Yeah, no, that was fantastic. Let's pause there for questions. I see one in the chat here.

0:44:54.6 Shelly: Yeah, Beda, just piped in and wanted to... So you mentioned doing an organ inventory, any thoughts of the use of chest versus breast if the patient hasn't used the term yet, to know which term we should use as clinicians? 

0:45:11.6 HL: Yeah, that is such a good question. I think in general, just in speaking, with trans individuals, I tend to see a pattern in that transgender woman refer to those organs as breasts and transgender men refer to those organs as chest. That can even go in terms of chest-feeding instead of breastfeeding, etcetera, etcetera. I think that that can be a place to start, but I think also, asking patients how they like to refer to that organ. I haven't had a chance to try this out in a clinical setting being in reproductive genetics, but I think something like that, "Some individuals refer to these organs as breasts, some organs as chest, do you have a preference to how I refer to these organs throughout the conversation?" Leaving it up to a patient, or opening it up to a patient, to define that. I think even saying that sentence demonstrates a level of competency in providing trans-inclusive care and shows the patient that you want to use the term that's affirming to them. So I think again, just opening it up for a patient to define, especially if they are out as a trans or gender diverse person.

0:46:52.3 DS: Yeah. And in your personal practice, Yeah, I... Great point about just asking people. [laughter] That's half the battle, like you said, I mean, that shows confidence. With all of your patients, do you kind of start out like, "How would you like me to refer?" Or do you look for certain signs when to build that into your discussion? 

0:47:17.3 HL: Yeah. Great question. I think that in terms of one way to build rapport that I try to do in all my sessions, of course it doesn't happen in all, but I always share my pronouns. And in some cases, when I feel that when a patient has noted a gender identity other than cisgender, asked the patient theirs. Other times, I just let a patient offer those pronouns and set a precedent in by offering them myself. I think that one pattern that I've observed is sometimes folks using gender neutral pronouns, but then only doing it for individuals who they perceive to be not cisgender or for people whose gender expression might not conform to the binary. And I think there's a little bit of a danger in that because we can't ourselves ever know someone's gender identity without asking or know someone's pronouns without asking. And so I think that there is a well meaning intent in using gender neutral pronouns for everyone who "appears" gender diverse. But I think what we really need to do is be asking patients how they identify, how they would like to be referred to and doing that same practice with our colleagues, too. Making space for people to define their own gender and to define their pronouns so that we can be most affirming to clients as well as colleagues.

0:49:10.0 DS: Yeah, no. Well said. Are there any questions? 

0:49:17.0 S4: Hey Hannah, I...

0:49:17.1 DS: Yeah.

0:49:17.8 S4: Sorry, I had a kind of a question. So you talked about long term goals and what you would like to see in the future. I'm wondering if you have any thoughts about, and this kind of a two part question, what can we do as clinicians walking out of this webinar today? And what can we, as Myriad, what can other labs do walking out of this call today? What are some immediate things that we can do to support patients that identify as part of the LGBTQIA+ community? 

0:49:49.5 HL: Yeah. Alright. I'm thinking from a lab perspective and Lauren, I love hearing what you and your team are doing to make forums more inclusive. I, and you might already be aware of this and thinking about this issue, but I think one aspect of insurance and lab logistics that comes up is when a patient might have one sex listed in their electronic medical record, they might have a gender identity that's separate from that. And then they might have a different sex that they are registered under and in terms of legal institutions. And so I think making space on potentially a TRF or within a portal that allows for clinicians who are advocating on behalf of their trans patients to note, this patient has, should have a female assigned at, or, I'm sorry, listed female on their test report because that's what's most congruent with their gender identity. But when you submit this to insurance, can you make sure to write down this sex so that it is covered or so that the patient doesn't have to go through a giant phone tree after the insurance claim is submitted to have that corrected. So some way to prompt clinicians, to note where there might be discrepancies in what's on the TRF and what's in the insurance and also to make space for clinicians to describe different nuances that would best ensure their patients have healthcare insurance, or coverage for a test.

0:51:55.3 S4: It's interesting that you bring that up and it's something that we're exploring and in future iterations, because of course there's a trickle down for every single little change. The insurance did pop up in conversation and part of that is the asking for the patient's legal name that's listed with the insurance because that, if somebody's in the middle of transitioning or a name change, that's a big process and takes a bit of time and paperwork. So somebody, their name might not, like you said, be congruent with what is on their paperwork or what's on their insurance. And so for insurance reasons, we need to have the legal name, whatever is on their insurance. But we're trying to make space on our forums in the future for additional information. And also in our notes, when we're speaking to patients, whether it's customer service or billing, or our genetic counselors, that the correct pronouns are in there, the patient's name correctly is laid out there. I think that will be in future iterations and this is evolving as we go, but it's definitely a really good comment. Now, what about clinicians? What can clinicians do as of today? What can they walk away from this conversation? How can they be more affirming or provide more affirming care? 

0:53:16.5 HL: Yeah, I... This is... It feels like such a little thing and such a big thing at the same time, but I think pronouns can be a moment at the start of a consultation where so much can change. I've had clinicians who introduce themselves with their pronouns. And it's just a moment where I realize that this person has competency in LGBTQIA+ issues. They are doing the work to show me or, and show all of their patients, that they are going to do... At least it's indicative of a commitment to learning about cultural competency and specific clinical considerations for LGBTQIA+ patients. And even though I identify as cisgender, a clinician telling me their pronouns in that way actually makes such a difference for the rest of the visit. And so I would really encourage folks on this call who have not yet integrated that fully into their practice to try it out, try it with a few patients and eventually work up to just making it part of the rapport building at the beginning of a session. It makes so much more of an impact than you might imagine.

0:55:00.1 DS: And in that, are there times where you restrict that or have you had any people think otherwise, almost like lash back or anything that you've seen in your clinic? Or any cautionary tales there that you could maybe provide? 'Cause clearly, as we were discussing from the legal landscape floating around there, not everyone thinks one way or the other, so just curious of your thoughts there.

0:55:31.8 HL: Yeah. I have gotten many quizzical looks, I will say that. But I think that even in the past five years, we've seen that practice of integrating pronouns change. And I think that we should be on the side of progress and should work to normalize this in every interaction. And I said previously that, there are some days where I say my pronouns and then I don't deliberately make space or ask a patient for theirs. Some days it just feels like too much and some days it feels like I'm reaching out too much, but that's something that I'm trying to change for myself, always asking patients their pronouns. I think that if there is ever a patient where you are being challenged or are maybe experiencing some anger or, like you said, backlash, I think it doesn't have to be a full educational moment. It can be a simple, "Some people don't go by the pronouns that are congruent with their sex assigned at birth so I just ask everyone," and then move on to the rest of the session. I think that we can model that moment of inclusivity and know that with maybe every... For every patient where there's a moment of disconnect, there are so many more patients who are going to feel affirmed and understood by that practice.

0:57:23.6 DS: Yeah, no, that's great. Well... Yeah, well said. It was just such a privilege having you on today, Hannah, thank you so much. Thank you, Shelly, for helping coordinate and Lauren, great feedback. I mean really everyone asking great questions. If, I know we're at time, so I wanna be respectful. We're actually over by a minute. Sorry, but yes. July 22nd please come on. We're gonna have Holly Peterson, she'll be talking about chemo prevention for breast cancer. She is an expert in this field and I'm excited to learn. I've taken care of many patients over the years, but you know, that's another very rapidly evolving field. So curious to see how she frames it and come with your questions. So thank you again, Hannah, and appreciate everyone taking time outta their day to learn about this important topic.