What We're Not Saying: Hereditary Cancer, Prevention and Public Health with Genetic Counselor, Jennifer Thompson | Season 3 Ep #7

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Welcome back to the Positive Gene podcast. It's your host, Sara Kavanaugh. And today we are talking about something that impacts more people than they realize, but just not being said out loud. When you see a headline about a public figures cancer diagnosis, we often miss the chance to talk about hereditary risk prevention and what it means for families everywhere. That's where today's guest comes in. Jennifer Thompson is a board certified genetic counselor and the founder of healthy Gene, a platform designed to make hereditary cancer risk more approachable and understandable. She's passionate about bridging the gap between science, public awareness and real lives. And this conversation. We're going to unpack this up. Missed opportunities in media, the importance of proactive education, and how we can all do a better job connecting genetics with public health. Welcome to the show. 

Jennifer

Thank you for having me. Excited to be here. 

Sara

Let's get started. Okay, Jennifer, tell us a bit about your background and what inspired you to start healthy Gene. And of course, tell us a bit about healthy Gene as well. So what can you unpack here for us? 

Jennifer

Yeah, definitely. So as you mentioned, I'm a genetic counselor. I earned my master's degree from Northwestern in Chicago. After graduating, I started working as a clinical genetic counselor. I specialized in cancer, where I primarily saw patients with breast, ovarian, colon cancer who were referred for genetic testing, typically after they already had a cancer diagnosis. Just another kind of thing about my background. I also worked as a research genetic counselor, and my team's focus was really implementing genetics and genetic testing into primary care. So the goal was really to help identify patients who were eligible for genetic testing, like before they were diagnosed with cancer or another genetic condition. 

So in terms of where I started to think about Healthy Gene, I really was noticing, like, patients are often being referred to me in genetics, like after they've already had a diagnosis. And like when I'd start getting into their family history and asking questions about everyone in the family, they'd often have family members with cancer who were diagnosed either at like a younger age, or maybe they had multiple relatives with, like, the same kind of cancer. So based on their family history alone, I was like, you should have been offered genetic testing years ago before you even got cancer. So, you know, I can't even imagine as, like, a patient how frustrating that would be if you, you know, knew this information. But as a provider, I was also very frustrated. Like, these people are missing out on preventive care that could have been offered and we could have maybe caught their cancer early or even prevented it altogether. So, you know, people would ask me like, well, why didn't anyone tell me about this before it got cancer? And honestly, like, there's no good answer for that. Research has shown that, like, physicians often don't feel very comfortable with genetics and, you know, aren't always aware of, like the red flags that they, you know, mean somebody should consider having genetic testing. There's a number of other barriers and things that patients in both physicians face, but like it's kind of its own systemic issue and just. So that's sort of where the, the thought came from. 

So to kind of try to combat this gap that I was noticing, I started Healthy Gene and that I wanted people to have access to genetic counseling and testing before they were diagnosed, so that we can be proactive about their risk. So through Healthy Gene, I offer genetic counseling and testing. I primarily focus on cancer, but also I'm doing some stuff with some other diseases as well. So yeah, that's that's kind of where that came from. 

Sara

Awesome. So as a genetic counselor, what do you see as the biggest misunderstanding that the public has about hereditary cancer risk? Yeah. You know, I was thinking about this, and there's there's a few different things. So I'd say, like, most people often don't even know that cancer can be hereditary or that genetic counseling or testing is available and that it can help them better understand their cancer risk. And, you know, if you don't know something, you can't do anything about it. The people who are aware of genetic testing, it's often like a barrier because they don't know, like, well, does this apply to me? Should I be getting testing or is it just something that's for other people? I really can't blame people. It's very confusing. The guideline there's these guidelines that, you know, insurance companies use to decide, like should genetic testing be covered for this person or not? And they can be really complicated like they you have to take into account how many people are in the family have a certain kind of cancer. What ages were they diagnosed and like what side of the family they're on? Like it's complicated. 

So, you know, I feel like I don't know that it's often quite like a misunderstanding about her hereditary cancer so much as it's like a lack of awareness. Yeah. And I guess, you know one other thing. One true misconception that people have that I think can be a big barrier is this idea that genetic testing is really expensive. And so, you know, costs have actually come down quite a lot. And if you meet your insurance testing criteria like testing might be fully covered by your insurance. And even if they don't cover it, testing from like a reputable medical grade lab can be as little as $250. So, you know, it's actually way more accessible than I think people are aware of. 

Sara

Yes. And then there's organizations too. If if your insurance doesn't cover it, you want to get this testing. There are resources available that can potentially help you with helping you pay for it. 

Jennifer

Definitely. 

Sara

And we can put those resources in the notes as well. Okay. Good. Thank you for that. So. Okay. How do I want to say this? I kind of want to preface this question with how I believe you and I connected on LinkedIn, because a reaction to a post by somebody about a missed opportunity with President Biden's cancer diagnosis, and that it was a missed opportunity to discuss hereditary cancer risk. So my question to you is Why do these these moments matter so much? And what could have been done differently? 

Jennifer

Yeah, definitely. So I guess just as a reminder to make sure everyone's on the same page. President Biden was diagnosed with an aggressive metastatic prostate cancer a few months back. And because most prostate cancers are slow growing and aggressive, metastatic prostate cancer is more rare. And we actually know that around 10% of people with metastatic prostate cancer have a gene mutation that contributed to them developing that cancer. So because we know this, we say genetic testing should be offered to anyone who has aggressive or metastatic prostate cancer. S

o back to how we connected and his diagnosis specifically. You know, there was a lot of media coverage out there about the diagnosis itself. Like what is metastatic prostate cancer? What's the treatment?  What’s the survival like? And their main call to action was really focused on like the importance of getting prostate screening, which, you know, obviously is a very important call to action and things that men should really be aware of. 

But what I wasn't seeing was any mention of the availability of genetic testing for prostate cancer risk. Um, and especially in like the context of metastatic diagnosis or maybe other family members with different cancers. And, you know, so I think these moments can be really important because it's just like a natural opportunity for us to educate like the public about the availability of like prevention for cancer and genetics is one part of that. So when public figures share these diagnoses, their diagnoses, people really pay attention. You know, they're interested, they want to know what happens to them. So when we can like slip in some of these like calls to action and education, um, I think we should be doing it. And, you know, just we're not really taking advantage of all the opportunities that do come up kind of on the day to day world. 

Sara

Mhm. Well, there's one very notable celebrity who really was a game changer for the BRCA genetic mutation. And that is the Angelina Jolie effect that we often reference. And I've referenced it on the podcast, even did an op ed in my local newspaper about it, because, you know, that should have served as a platform for prevention and awareness as well. And I think it did do a lot of that, especially in the BRCA risk pool. Right. But I think there's a ways to go. And in building awareness for things like Lynch syndrome, which is as prevalent but not as well known. So with that, I mean, that was a transformational moment, right? That was that moment was a game changer for sure. Gosh, how many years ago was that now? I think we all were. 

So it's it was quite a few years ago. It was a game changing moment. But there's others that may fall flat. So what is happening here? Why do some fall flat and one raise such a significant awareness? 

Jennifer

Yeah. Great question. You know, I think one of the main differentiators of that moment was that it was like 100% about genetic risk of cancer. And Angelina making like a choice to reduce her cancer risk. It wasn't, I don't know, diluted, I guess, by a cancer diagnosis or like a concern for her immediate like well-being by her fans and and you know, the world. Yeah. So I feel like just that that hyper focus on genetics really, you know, was the main differentiator. 12 years ago when she announced that she was at BRCA one gene mutation carrier, the idea of having preventive surgeries really seemed more radical. And her being just 37 at the time, really combined with her celebrity really just grabbed people's attention. And I think, like a lot of women probably saw their own stories within Angelina's. Maybe they too had a family member with breast cancer, ovarian cancer, and hearing about this made them think Angelina is doing something I should do something to.Just learning more about Angelina's family history and what she did, I think led a lot of women to learn more about genetic testing as an option. But with the more recent public cancer diagnoses, like President Biden's or Olivia Munn's breast cancer diagnosis, um, the media is really just focused on the cancer diagnosis itself. And genetics sort of becomes like a footnote or just not mentioned at all. 

Sara

Yeah. So we see this as an opportunity for the media maybe to reframe the narrative, right, and have a conversation maybe more around the the public health storytelling, right. How do we take those experiences and turn them into some kind of call to action to prevent cancer? What do you think that they could do? 

The media providers, you know, people, influencers, whoever it may be. Give us your thoughts on that. 

Jennifer

Yeah. You know, I'd really like to see the media, I guess, kind of take things a step further. You know, we focus on, oh, this is the diagnosis. But a lot of times we don't ask like the why? Like why did somebody get cancer so young or why did they have this metastatic disease. So there's really a chance to kind of educate people more about that. I mean, I'd really like to see the media add genetics into the story as sort of a potential answer to the why and sharing more information and including like a call to action like these are the reasons why somebody might consider genetic testing. Like Olivia Munn was diagnosed under age 50 with breast cancer. So genetic testing is something that she should have been offered. I think it may have been, and I think she may have been negative, which, you know, is good, but that's also an important, you know, touch point in that...

it lets people know and normalizes genetic testing as part of like the diagnosis process. 

Sara

Yeah. I think it's helpful too, that if you get the genetic testing before you have a diagnosis, it's important to note that that can also drive your treatment plan. 

Jennifer

Yes, definitely. 

Sara

And so that's another, like you said, another footnote or another element of that should be more than just a footnote like genetic testing can prevent the cancer. But should it come up it can also drive your treatment plan. And for Olivia Munn. Like you said, if it was, I think you might be right that she didn't have a genetic mutation. That's a win. But she still was able to use her large platform to share the message of genetic testing and the importance of it. Yeah. 

Okay. So let's talk about the systemic gaps and messaging. So what are the risks of skipping these conversations or just not having a clear call to action. What is the outcome going to be if we don't continue to do this. Because I think you and I you know, our connection is not just talking about genetic testing in general, because obviously that's, you know, where your strength lies. But the larger issue that we're facing right now is just the risk to research and medical, uh, research in general. 

Jennifer

Yeah. 

Sara

You know, what are the risk of these conversations and reducing them to the general awareness in our country? 

Jennifer

Yeah. You know, I feel like if we skip these conversations, why they're just going to stay where we are now or depending on, you know, what happens with the legislative situation, um, maybe could get worse. And, you know, where we are right now is we're missing up to like, 50% of the people with cancer who should be getting genetic testing. And that's not even mentioning the people who are at risk but don't have cancer yet. I think there was a study a few years back that estimated that there's at least like about a million people out there who probably have a genetic mutation, but they don't know about it. So I think we really need these, like, calls to action along with any awareness campaigns that are out there. It just it helps people make more sense of the information that they're receiving and like, put it into a better context for themselves so that they can really understand, like, oh, this really does apply to me. I should be paying attention to this. Maybe I should, um, yeah. Because it all just really comes down, I think, to understanding your risk. And once you understand it, like you can take action and take control and it doesn't control you anymore, you know? 

Sara

Yeah. So what would you say? You know, how can we encourage these conversations earlier? Like before someone's facing the crisis because like you said, some people might not be having this conversation until somebody they love has cancer. And then all of a sudden it's like, wow. And that's probably the case for many of us. I had sporadic cancers in my family, but for me, it wasn't the cancers that actually led to my genetic testing. It was another layer of understanding my risk because I have extremely dense breasts and I was shocked to learn I had two genetic mutations. Now I can do something about it., right. So how do we encourage those earlier conversations, like with patients, their families? Maybe they're their primary care providers. 

Jennifer

Yeah. You know, I think this all kind of comes back to awareness. If you aren't aware of hereditary cancer or genetic testing, you can't have a conversation about it. So, you know, I really think to encourage these earlier conversations, we just have to continue, like spreading the word and making sure and encouraging people to talk with their family members about their family history. You know, even if there's not a current diagnosis in the family, just like, well, you know, what did grandma pass away from? Like knowing these things are important for your health care. They can change what your doctors do, like on your day to day medical care, but can also say, hey, maybe genetic testing is something you should consider.  So I really think we just need to like, continue to spread the word, like on social media. That's important.

But also like I'd like to see this kind of go beyond that and get more in the mainstream media more regularly. And then, you know, the awareness of hereditary cancer issue also applies to like primary care providers. It's gotten a lot better in the last ten years. But, you know, I think I mentioned earlier that often people aren't very familiar with like when somebody needs to be referred for genetic counseling or genetic testing should be done. Plus, like these guidelines change a lot. So how are PCPs really supposed to keep up with all these changes. And they have a lot of things on their plate and like very little time to get them done. So awareness is like one piece of the puzzle. But there's also been some talk in the genetic counseling community lately about integrating genetic counselors into primary care offices themselves and how genetic counselors could maybe help, like collect more complete family histories and then facilitate, like, proactive, genetic testing.

Sara

That's brilliant.

Jennifer

Yeah. So I think, you know, kind of this two pronged approach, like we need providers to, you know, be more aware, but also we really need to just make sure that people themselves know, like we can't just focus on the providers people need to know about and be aware so that they have the tools and like the knowledge to advocate for themselves. 

Sara

Not everybody has that innate sense for self-advocacy., right. Some of us are - I mean, I've talked about my own approach. You know, I come in with a pad of paper and studies. 

Jennifer

Yeah. You're involved. 

Sara

I am very involved. And, you know, but not everybody's built this way. And I've said this before as a recommendation to people, is having somebody go with you to your appointments. And if you have a virtual appointment, like I've done with my sister when she did her genetic testing for hereditary cancer - she just found out recently she has Lynch syndrome as well. And I was on the intake call with the geneticist. And then we did the call together with the results. And you know, she knew there was a chance, but she's like, I don't even know what questions to ask. Can you be there? 

Jennifer

It can be really overwhelming. 

Sara

It really can. And I think it's, you know, I could go into it with very calm sense because I've already been there. I've experienced it. I'm not letting you know the cortisol getting in the way of my head thinking correctly anymore. It's not to say that I wasn't, you know, anxious about her results for her, but I was certainly carrying less of that weight. And so she could just listen and I could take notes together, and then we could reconvene after she had a moment to sort of let it digest. 

So, what problem are we trying to solve right here? You know, and like you said, it's just getting started with awareness and leveraging the media and maybe to some degree, our primary care physicians. 

Jennifer

And I think, you know, I think we all sort of expect our doctors and health care providers to know everything. And while that's a beautiful goal and idea, you know, they're human too and they make mistakes. And especially when it comes to genetics, like they get, I don't know, I think a class maybe of genetics in med school often and, and then it doesn't show up again in their residencies and the rest of their training. So it's not ingrained in them to think about the, the why is this happening? Or think about like, the entire family. It's really like, you know, patient focused. I just think awareness amongst providers is good and helpful, but like, people need to really know that their doctors aren't super human, you know? And it's good to ask questions like if you think something's going on like from a genetic perspective, like ask like, do you think this is something I should look into? And if they're not sure, hey, there's genetic counselors. I love seeing people who just are curious, you know, like, I'm not sure if this is a thing, but maybe it's something I should do. Like, let me help you. 

Sara

Yeah. Yeah, for sure. I mean, and that's that's an important part of your role. It's not just understanding genetics, and we've talked about this before on the podcast - is the counseling element is talking people through what to expect with the genetic testing process and even making an assessment if they really need to have it or not, you know. So yeah, maybe you could speak to that. 

Jennifer

Yeah. Part of the genetic counseling process, like you said, is, is the counseling. So it's really trying to help people make informed decisions about their health care and genetic testing specifically. We try to outline what this information can tell you and what changes might need to be made based on these results. And for some people they have no idea about this coming, you know, coming into the appointment with me. And so it's an opportunity for me to, you know, inform them, but also to help them make a more informed decision. Like there are some people who realize after they talk to me that I don't want this information, this is going to make me so anxious. And then, okay, you don't need to do genetic testing, but we do need to like, manage a risk based on what we know about your family history. 

So even if you just talk to us and don't do testing, sometimes we can make recommendations to change your medical care based on that alone. Just helping people try to go in and form and knowing what to expect is, is kind of my goal when I see my patients. 

Sara

Yeah. Getting back to sort of advocacy and some action. Like what do you feel should happen whether structurally or culturally, really for prevention to become part of the way we talk about health, not just treatment but health, especially in the hereditary cancer space. 

Jennifer

Oh, man. Yeah. You know, it's a big question. I think there's there's just a lot that needs to shift in order for prevention to kind of become more of the norm, both systemically and culturally. Our health care system itself, like, I'd love to see it shift more from this reactive to a more proactive approach. And this is hard for a lot of reasons. You know, we've been doing things a certain way for a very long time, and change is difficult. You know, one of the other big issues is health insurance and how they kind of pay for services traditionally, like they pay doctors and hospitals using a fee for service model. So basically, you know, you see a patient, they do a test, they get paid no matter what the outcome is. You get paid for doing the thing and then, but more of a shift to like value based payment models I think could help with this transition some. And with value based payment it's more - the payment is tied to the quality of care and improved health outcomes. So, you know, providing some kind of like a financial incentive to get us shifting more to proactive health, I think is one lane that could potentially at least, you know, help move the needle. 

But I also think, you know, it's not just about our health care system, our health insurance. We kind of need to retrain the population to, like, think proactively to, you know, people know to come to the doctor when they have a problem. My knee hurts. I need to fix this because it's impacting my life. But if your knee doesn't hurt, you're not going to just go in for no reason. But making sure that people know like, hey, come in when you're still healthy, that's important. So we can keep you healthy. 

And like we've been talking a lot about, unless a little bit, just like I think people we also need people to be their own, like health advocates. And like I said, kind of health care providers are just people. They make mistakes. They can't know everything. 

Sara

What do you see in your patients? What does that look like to you when they're advocating for themselves? Like, is this them coming to you- I heard something on TikTok or Instagram about this genetic testing thing, which is a lot of what probably what people see and hear these days. Hopefully. So what does that look like to you when somebody is truly embracing that self-advocacy? 

Jennifer

Yeah. You know, I guess for me, like, in really in my practice specifically, like, it's when I see, my self-referred patients, like you're taking a step beyond just like your doctor saying you need this thing. Like you're seeking out information and, you know, counseling as to how to move forward. And I think, you know, just more with  your doctors and stuff. It looks more like showing up prepared, having questions. There's even I, I'm sure there's resources out there that are kind of like here's the questions to ask in this situation. Yeah. You know, coming out. 

Sara

Oh yeah. Use ChatGPT. 

Jennifer

Yep. Use ChatGPT. Perfect. Or like asking a family member or a close friend to come. Having another set of eyes and ears is always helpful. 

Sara

So, for those that maybe are feeling a little overwhelmed and self-advocacy is not something they're comfortable with. Or maybe they're unsure where to start. What's one thing that they could do to feel more in control of their hereditary cancer risk or just in general? We have people who listen to the show that aren't just necessarily for hereditary cancer risk, but what is one thing that they can do if they're feeling unsure? 

Jennifer

Yeah. You know, with genetics, I'd say like the best thing people can really do and start is just by knowing their family history, talking to their family members to better understand, like what conditions are in the family. 

…Do multiple people have the same condition? 

…Were they diagnosed at younger ages or was it something more like in their 80s when we, you know, sort of expect people to start getting more health issues and just knowing that, you know, 

…if you if you see multiple people in the family with the same or like a related type of cancer or a young age, 

it's a good idea to consider talking to a genetic counselor. We can really be a good resource for information. So I think knowing your family history is kind of the best place to start, but then it's the what do you do about that that we see the action. 

Sara

Mhm. Yeah I think some people do get anxious right about going through the testing process. I think actually let me back that up. One thing we do want to point out and I like asking genetic counselors that I've had on the show re-emphasize that like the 23 and Me ancestry DNA tests. Can you just remind our listeners this is not the genetic test, and we should move this to the front of the podcast, honestly, those are not the cancer genetic testing that we're talking about here. Can you clarify that point for us? 

Jennifer

First, you might not be getting accurate information, and that's why you should never use direct to consumer testing to guide your health care decisions. You need to get it confirmed from like medical grade lab. And then so if you think of like your jeans, you know, like a sentence in a book or an entire book itself, when we do medical grade testing, we like read through the entire book. We look for any spelling mistakes, grammar problems that, like, might make that gene not make sense and make it not work anymore. Um, but when a lab like 23 and Me does testing, they only check like specific spots in the book. They're looking at page five, second paragraph, line two, and maybe page 73. It's not usually comprehensive, so things can be missed in that way as well. 

Sara

Before we wrap up, let's get back to the advocacy and action piece, because I really want the listeners to walk away, especially if they're in the advocacy space they're on, you know, sharing their story on social media. Um, maybe some public health professionals, you know, what can they do to help close this awareness gap? 

Jennifer

Yeah. You know, in thinking about this, I think we just have to keep being loud, and we really need to try to meet people where they are and where people often are these days is online or on social media. And, you know, traditionally, I think at least health care providers and, you know, probably more in the public health professional space as well, we have a little bit of the social media version, which, you know, makes sense. But hey, if we're trying to spread this message, like social media is the main platform we have as individuals. 

So while I think social media is great, though, I also kind of think, you know, sometimes it has a way of amplifying, like your existing world and your existing viewpoints. So, you know, sometimes I question, like how successful is it in getting out, like new information to people who are already tuned in? Um, you know, we're relying on the algorithm to just magically find these people.I know I can sometimes feel like it's screaming into the void or like preaching to the choir when I like, post things. And, you know, maybe part of that is just we need to be better, like with our calls to action and telling people what they should do with this information, if it's not applicable to them specifically, send this to someone you love who has a family member with breast cancer. Um, and just calling out, like, the information and like, who specifically should be taking action on this? 

Sara

Love that. 

Jennifer

Another thing I've kind of noticed is that, you know, I've been seeing a lot of posts from like Susan Komen and other like, cancer awareness organizations and working to raise like, awareness on early onset cancer diagnoses, which is awesome. Like, people need to know that just because you're in your 30s or 40s doesn't mean you're not going to get cancer. It can happen. And they're great about like informing people about the signs of cancer and why screening is important. But where I see it in their posts, I see less about information about genetics. Maybe as advocates, we can collaborate with them a bit more. Um, specifically on the awareness of hereditary cancer. And I just like to see them kind of normalize genetic testing in some of these posts, like when they're covering, a story about someone who is diagnosed with breast cancer or colon cancer under age 50. Like, they should be offered genetic testing. So adding a sentence or two, like if you're diagnosed under 50, you should be thinking about genetic testing. And even if it was a negative test result, like it's still an important thing to make people aware of because we won't know if you have a mutation unless we test you. So. So yeah, I think just raising awareness and yeah, and trying to get more into the mainstream media more. 

I hate to say like capitalize on the diagnoses and public figures, but like they're sharing this information presumably to, you know, help other people. So, we need to take advantage when we can see the information. 

Sara

Yeah, absolutely. Yeah. I was going to ask like, give me an example of what you would like to see, right. And you gave a little bit when we were talking about like, President Biden's diagnosis, that there should have been some kind of footnote in there about genetic testing, because the type of cancer that he had with metastatic prostate cancer. But if we do have people that are in the public eye that are listening to this, what is the message for them? What do you want them to say? 

Jennifer

Yeah. Great question. I guess my message to them would be like - thank you for sharing your story. I think it really does have a big impact on everyday people and, you know, how they see their healthcare. But also just I know genetics can be a difficult conversation, and it's a very intimate, so I can understand maybe not wanting to share too much about genetics publicly, but if you feel comfortable talking about it, I think, and have a big impact just to start the conversation. And amongst families like we, we're kind of like Angelina's family. Like we have a lot of breast and ovarian cancer. So there's a real difference, I think that could be made by sharing that information, especially from people like the public. 

Sara

Yeah, yeah, I think so too… on our episode with Doctor Vicari and Doctor Ditchfield from Sheffield University in the UK, we talked about people publicly sharing their predispositions and their experiences on social media, and specifically around BRCA and Lynch syndrome and while there are some of us that are very open about it, and my family is totally fine with it because just because of my family doesn't mean they also carry the gene. Like I said, we found out my sister does, but she was totally fine with me sharing her story as well. But I do think there's that dynamic of the uncertainty of people sharing it, because it may affect their family members as well. You know, that is a delicate conversation to say to your family like, hey, I feel compelled to let people know about this - that they can prevent cancer. And, you know, I think that's something that I want to tell the world. I mean, how do people navigate that conversation with their family? Because if you're like us, we want to amplify this message of prevention and being proactive and self advocating for your health care. That's what this looks like, right? So what advice do you have for those folks? 

Jennifer

Yeah. You know, that's the thing about genetics is we like to keep it in the family. 

Sara

I love it. That was a great punchline. 

Jennifer

Yeah. So I feel like navigating those conversations can for sure always be tricky. I think, you know, for those who are compelled to share their story. Like I said, I think you can have a real difference for people, but definitely talking with your family members about it and just starting that conversation, I think is important. It's better for them to hear from you that you're thinking about doing this, rather than hear from the op ed that you published in New York Times or something, you know? Yes. And and just knowing, like it's not necessarily a one and done conversation. Like introduce the idea.  If they're on board already great. If they're not or they're like a little hesitant like okay well maybe we think about this and let's touch base again on this later because that's something I'm really, I'd really feel like I need to do and just kind of keep that conversation going. 

Sara

Yeah. It's good advice. Is there anything that you wanted to speak to, sort of the landscape that we're facing right now with the impact to healthcare in general in the US, some of the policies that we're seeing. I know it's a delicate question for somebody who works in, you know, the health care field, but what are some notable things that we should be paying attention to right now?

Jennifer

Man. Great question. 

Sara

This was not on your questions, but I'm like, I gotta know like what you're thinking. 

Jennifer

Let's see. I mean, I mean, I think the big thing that's one of the things that's been sticking out to me is, you know, just this or is it the Big, beautiful Bill and how the impact to research and cuts and funding, as well as cuts to like Medicaid, health insurance for people, like millions of people are losing their access to health care…what do we do about it? I mean, I think like continuing to go to like, advocacy days like you are and talking to the people who make these decisions in the Capitol and on a state by state level is really important. And let them know, like, hey, we're not happy with this. Research is so important… it's, it's how we get to better health care and for everybody you know and like making sure everybody has access to health care. It shouldn't be this like privilege to be able to get treatment for a health condition or, or to learn that maybe you have this risk for cancer. 

Sara

Mhm. Yeah. Now that's good. That's helpful. You and I are very aligned on that thought and that sentiment. 

So as we wrap up, do you want to share any resources through Healthy Gene or any other resources you'd like to recommend for people that are maybe just beginning to explore the risk,

Jennifer

Yeah. Yeah, definitely. You know, like I mentioned earlier, first, knowing your family history is super important. So after having that conversation, you're going to end up with a lot of information, but maybe be staring at that piece of paper being like, okay, great, what do I do now? So one of the most like good things to know about is, how can I take this information and make it into something more actionable for myself? And like I mentioned before, is one of the most difficult things personally, that I think is that people don't often know, like if or when they should get cancer genetic testing. So in an attempt to sort of solve some part of this problem, I have been developing a risk assessment to try to help people figure this out. Like should genetic testing be something that I'm doing or shouldn't be thinking about doing? It's called the Know Your Risk quiz. It's free on my website and it takes about five minutes. So not too long and it just asks you several questions about your personal and family history of cancer. The purpose of it is basically to screen for signs of BRCA 1 or 2 gene mutations, as well as Lynch syndrome. 

So if you screen positive on that quiz, it means genetic counseling and testing is probably something you should consider. Doesn't mean you have to do testing or anything, but you know, being aware of this and talking to a genetic counselor is probably a good next step. For those who screen negative. You know, you likely don't need testing for either of those two conditions, but if you still have concerns, again, seeing a genetic counselor could still be beneficial. there may be something else hereditary going on in the family that the quiz doesn't cover, but a genetic counselor would spot. So. So yeah, I think, you know, taking that step and after understanding your family history, either taking this quiz for a low barrier entry point or scheduling an appointment with a genetic counselor is a great next step. 

Sara

All right. And they can go to NSGC. Is that right? 

Jennifer

Yeah. To find a word, counselor. Yeah, there's a findageneticcounselor.com I think it is. So there's a whole page you can put in, you know, your state and what, like specialty you're looking for specifically. And it'll come up with a list of genetic counselors, either in your area or even who offered tests or who offer telehealth appointments. 

Sara

Yes. Which healthy gene does offer? Yes. 

Jennifer

Yes, yes. All right. Good. Actually only do telehealth. So, you know, again, trying to make that easy for people to, uh, to get in. 

Sara

I love that I think, uh, yeah, I appreciate that you are doing everything you can to create a low barrier experience for people trying to navigate this journey of genetic testing. So kudos to you for that. 

All right. Where can our listeners connect with you and learn more about your work? 

Jennifer

Yeah. So they can check out a Healthy Gene's website which is myhealthygene.com. They can also find that Know Your Risk quiz on the website. Of course I'm also on social media Instagram, Facebook, LinkedIn, all the good stuff. There's links on the website to all those accounts. So if you'd like to follow,that’s probably the best place to start. 

Sara

Thank you so much for sharing your perspective and passion for closing the gap on what we know in science and genetic testing, and then maybe what people are truly experiencing out in the world. So appreciate your time today. 

Jennifer

Yeah for sure. Thank you so much for having me I appreciate it. 

Sara

All right. For our listeners, if you've ever felt like the conversation about cancer stops at treatment, instead of starting with prevention, let the serve as your reminder that knowledge is power. And hopefully we conveyed that for you today. 

So it's never too early to ask questions, learn your family history, and then just take steps to protect yourself and your loved ones. For links to Healthy Gene and the resources mention, please check the show notes and the podcast blog. Don't forget to follow for episode updates and snippets from the conversations that we have on video. 

So as always, thank you for being a part of this community where we have open conversations like this and take proactive steps that will make a difference. So all right, until next time, take good care of yourself. And remember asking the right question today can change the story for tomorrow. 

Resources Mentioned

• HealthyGene Website: https://myhealthygene.com 

• Know Your Risk Quiz (free assessment for BRCA & Lynch): available on the HealthyGene homepage: https://www.myhealthygene.com/know-your-risk-quiz

• Jennifer's Blog: President Biden's Diagnosis: https://www.myhealthygene.com/post/biden-prostate-cancer-brca-risk

• Find a Genetic Counselor: https://findageneticcounselor.com

Disclaimer:

This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.

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