Intro: Welcome to the CGA-IGC podcast series, brought to you by CGA's Education Committee and made possible through the generous support of our sponsor, Lynsight. Each episode aims to bring you an in-depth discussion related to emerging data, clinical challenges, and unique perspectives in the world of hereditary GI cancers. Before we start, we'd like to remind you that the content of this podcast is not intended to replace professional medical advice, diagnosis, or treatment, and the content reflects expert opinion at the time of recording.

Keep listening to find out more about this episode's host, guest and featured topic. Also, be sure to learn more about our sponsor at lynsightlabs.com. That's L-Y-N-S-I-G-H-T labs.com.

Natalie Richeimer (Host): Hello

everyone. My name is Josie Baker and I'm a genetic counselor at the Ohio State University Comprehensive Cancer Center, and I'll be your host today. During today's podcast, I had the distinct honor in introducing our expert guest, Natalie Heimer, a certified genetic counselor and education and outreach manager at J Screen.

Our focus will be providing care to the Orthodox Jewish community in the setting of hereditary conditions. Natalie, thank you for being with us today.

Josie Baker : Thank you so much for having me, joie. I'm excited to be on the podcast. I'll just start off by saying, I myself am an Orthodox Jew. I say before I talk about anything while I am a member of this community, and there are certain cultural practices, in this community that translate around the community.

everyone is an individual and this may not speak to every single person in the community that you may encounter in your practice.

Natalie Richeimer (Host): can you tell us a little bit about the Orthodox Jewish community's view on healthcare and preventative care? I.

Josie Baker : I would say like as a whole, there are many members in the community that are very educated. this is a community that's not averse to healthcare per se. and the same goes for preventative care. but the community's view specifically on healthcare, I would say is very pragmatic, meaning. You go to a doctor or a provider with a purpose.

so it's, you know, the idea of going to a provider just for the sake of, or to be making you anxious or without really a pragmatic, purpose afterwards, is not something that I think bodes well for a lot of members of the community. that being said, screening, is something that.

Management is something that is encouraged in the community because of that, because it's very pragmatic. So for example, getting a mammogram, is something that's a very pragmatic thing, with a very clear purpose. community member, I don't wanna say always, but most probably wouldn't have an issue with that. it becomes more of a question when things are not as clear, meaning the particular intervention or the particular management or the particular healthcare, suggestive is not.

a clear, pragmatic, health saving or lifesaving thing. and I always like to say also the, Jewish religion, specifically the Orthodox community. the most important thing is. Life. Saving a life, is the most important thing. It's one of the biggest, things that you can do. And so when healthcare is going to save lives, right, when it's very clear, the community is encouraged to seek out that type of healthcare.

Natalie Richeimer (Host): Thank you, Natalie. And in to expand off of that, can you discuss a little bit of the infrastructure and medical decision making and autonomy in your community?

Josie Baker : So our community is a community that follows traditional halal, or halakha, meaning Jewish law. That's based on tal in interpretation, Talmud. and There is a very strict kind of legal system that's in place. and so when you want to know what you should be doing, oftentimes community members will seek out, rabbis or clergy members to help them make those decisions.

So I'll give myself as an example, right when I was, you know, having my first pregnancy, I wanted to know which tests, for screening for the pregnancy. For amyloid that I would be allowed to do, I called up my rabbi. We had a discussion, and it was set out very clearly.

These are the things that are done. now rabbis are not medical experts, so they rely on patients to give them the information or to speak to the medical provider. to learn. and then they can kind of put that in the existing, framework. So that's kind of the hierarchy, that, every single part of our decisions are guided by Halakha or by Jewish law.

And you are somebody because you are bound by that law. You as a person are not necessarily learn it in that you will go to an expert. An expert would be a rabbi, typically to help you understand how to live your life with those laws.

Natalie Richeimer (Host): And when it comes to hereditary cancer, how does your community view the concept of.

Josie Baker : I will say the community is not a monolith. meaning you have people who I would say are more and less observant, even within the Orthodox slice of the Jewish community. and I would say when we talk about the community in America, it looks different than in other places around the world.

And I think that's very, very important. To preface before, I'm, talking, I'm talking about the community in America as a whole. you have some parts of the community in this country, that are. Very, very modest or what they depict to be modesty. So they won't talk about body parts in public and that's very specific ultra orthodox parts of the community.

So for them to say something like, oh, this is hereditary cancer screening for breast cancer. That might make, a member of that community with breasts uncomfortable, for large swaths of the community. It doesn't. But I would say like it's important to understand that there are community members that don't, hereditary cancer tests.

Is something that I would say the community as a whole, in my encounters. Needs a little bit more education towards, and I would say this is a problem not just at the community level, but the provider level as well. Right? We know that our providers are not necessarily educated on the power and the utility of hereditary cancer testing.

there is a hesitation within certain pockets of the community to engage in hereditary cancer testing for a few different reasons. the first and foremost is marriage ability. certain facets of our community, when they get married, they get married through something called the system or, matchmaking. If almost that makes sense.

And I'm gonna go on a little tangent just to explain what I mean by that, but, certain facets of our community, When they are dating, they're dating for marriage, so they will go out within a very specific organized structure where they will create a resume with references and all their life goals and put on paper really what they're looking for in a partner.

that will be given to a professional matchmaker and they will try and make a match between them and somebody else. and a big part of that, right, when you're looking for someone to marry, besides for compatibility and life goals, et cetera, is thinking about building a family together. That's, traditional value in this community.

And there are people who get concerned that. whether it's hereditary cancer or recessive disorder, having something, a genetic, mutation or variance, would make them less manageable, right? If somebody is at an increased risk for hereditary cancer, and you're looking to marry that person, right? That might make you less marriageable.

Now, if you're thinking about marriageability, that can be very scary, Because we know we pass that down to our kids. So even if mom or dad is testing, they may be nervous to test because they have kids that are marriageable age or going to be become marriageable age at some point in the future.

So there is a hesitancy from that aspect of I don't wanna ruin my child. Chances of getting married. and it's complicated. I would say like it's a social issue that it's complicated and it's something that the community has to work on because there's a trade off, Not knowing may mean, not being able to save your life.

the other piece I would say is not understanding. Necessarily the difference between hereditary cancer testing and carrier screening, and really understanding the utility of it and the life-saving nature of it. And what do I mean? Like this community, the Orthodox community is very aware of hereditary, carrier screening for recessive and excellent disorders.

They know about that. Most community members have a basic level of understanding of that. and so they kind of lump that in. With sometimes hereditary cancer testing as many people do, and understanding that this may have real implications for their health instead of kind of just being a fun fact, is not necessarily something they all understand.

It's also not something necessarily that, the rabbi may understand because the community has. Less awareness of this. It's been around a little less longer. It's been accessible to the public a little less longer. and so that can be a hesitation as well of like, why would we do that?

why is this important just to know that I'm gonna get cancer later on? why would I do that? That's just gonna make me worried and it's gonna ruin my child's chance of getting married. So, no.

Natalie Richeimer (Host): That's very insightful, Natalie, and thank you for sharing some of those experiences and Hess within your community. And I think this brings up a really good question that I had is really how do. Us as genetic counselors and GI providers better support these individuals in your community when we're typically removed and we're not seeing them as frequently, and especially when it comes to hereditary cancer, genetic testing, possible implications, and then as well as the screenings or next steps that we might recommend later.

Josie Baker : So I love that you're asking the question and I don't think I have a good answer necessarily. Like I don't have the cure all. I have things that I think would be helpful in really chipping away at a very, very large systemic issue, not just in this community, but around the country for lots of communities.

and for me, the first part of that is really, really education. Step one, always education. I'm a big believer in that. and by education I don't just mean educating patients, I mean educating their rabbis as well. many of us in this country. Many of us in the United States, especially in big areas, there are rabbis in your community.

And those rabbis are the ones that are fielding these questions. And they may not have the education again. They didn't. Become genetic counselors. They don't have an advanced degree in medical genetics. They shouldn't, that's not their role. But taking the time to, meet with them and do outreach with them and explain to them the testing in a non, predatory, non, aggressive way.

Just like, Hey, I'm a genetic counselor. I want you to learn a little bit about the testing I have found to be remarkably successful and I've. Always found that the rabbis are really, really willing to learn and are really grateful to learn about this too. I did a seminar for, the Rabbinical Council in Canada, about a year ago, and the rabbis had said to us, how come no one has ever told us about hereditary cancer screening?

Like, this could be so helpful to our community. So I, I highly encourage outreach, I'm part of this community. So it feels natural for me to go to rabbis and educate them. If you're not part of the Orthodox community, you know, come with your humility, but definitely come willing to educate and explain why you wanna do it.

And you want to be a resource to them. They're very open. I would say that's piece number one. I would say same goes for community members. hooking up with local organizations, the Orthodox community is incredible at creating resources for the community. they have so many organizations that really what they're doing is supporting individuals with cancer or individuals who have a family member with cancer, So being able to reach out to those communities and say, Hey. I'm a cancer genetic counselor.

How can I get involved and help out? that's a really simple thing to do. so that's, outside of clinic, but you're seeing a patient inside of clinic, you know, they're orthodox. what I think is so important is to do your job as a genetic counselor. Amazing. Like, we should all be doing all the time, But making sure that you are really, really explaining.

The utility of testing and also if you can see that that person is utilizing a rabbi, and obviously hipaa, make sure you're HIPAA compliant, make sure everybody's signing releases. But if you feel like there's a disconnect between what the rabbi is hearing and what you are saying and the patient.

Is kind of in the middle, being able to be confident to say, Hey, I'm happy to speak with your rabbi. if that's something you want, if you think that would be helpful. I think that's huge as well. and having that humility to understand that you're not the only provider in the room.

The rabbi is a provider that is of equal, if not greater importance than you are. I think is huge. And then just understanding that things that may not seem important to you or may seem strange and different to you are very important to members of some members of this community.

Right? For you, you may be like, so who cares if I'm, I don't know, an HBOC carrier, who cares if I carry, a pathogenic mutation, BRCA one and two? why would that matter? That would only save my life understanding if there are social and cultural things that. you may never understand 'cause you're not part of this community, but that they are important to our patient.

And being a good provider means caring about things that are important to our patients that may not be important to us.

Natalie Richeimer (Host): And what I really love hearing you say is just how everyone, a part of the patient's care is really just looking for, advocating for the person sitting in front of us and all different aspects. And I, really appreciate hearing that perspective as well and becoming involved and, sharing some of this information with the rabbis and other clergy members and, thinking a little bit more out.

Cy of genetic counseling, especially for our folks who may be listening who are GI surgeons, and who may have to discuss, certain surgical implications for them. Do you have any guidance for them on how to navigate those conversations?

Josie Baker : something that I've heard from rabbis over and over and over again, is a respect thing, You should be talking to this rabbi with respect. he is not a provider. He knows he's not a provider, but he's an important member of the team. And when. You are talking to this person, provider to provider, it makes all the difference.

Instead of, oh, look at me, I have so much knowledge about my area of specialty. sit down, let me school you again. You don't know things that the rabbi knows, you haven't spent. years and years of your life learning Telemedical law and, being a part of this community, there are experiences that you will never understand.

and coming to them with humility is important. I've also heard the feedback of sometimes. the doctor is very, very polite to the rabbi. And then once the rabbi's off the phone can really undermine, like, oh, that's really archaic. Or like, oh, that's really backwards, or your rabbi is just really uninformed.

and that can really do a lot of damage, to a relationship with a provider and a patient. and just makes the patient uncomfortable. Like, you're not doing anything as a solid, I'm gonna take a step back and always say like to a patient, if they've chosen to involve a rabbi, it's because they want their counsel.

I always say, I wanna be good with God. Like they wanna be good with God and them going to the rabbi is their way of being good with God. So if you are going to undermine what the rabbi's saying, your undermining their relationship with God that's not gonna go down.

Great. And I know we all have the best intentions, but I really, want people to be thinking about that. Like this is something the patient has. Initiated the rabbis not Big brother. They're not surveilling your life. They don't come to the patient. The patient comes to the rabbi, which is hugely important.

I would also just like, again, always get curious like, Hey, I'm noticing I'm saying this. I'm noticing your reaction. Is this, can you explain a little bit why you're feeling that way? I know we don't have time as providers to flush things out always, but sometimes taking that extra 10 seconds will explain the concern and then you can really, really quickly address that.

I had someone come up to me to discuss hereditary cancer. Again, the Jewish community, specifically orthodox community. Everyone's friends. it's a real just community feel. So like you'll see people on the weekend and they'll come up to you and ask you their questions 'cause they know you do this kind of genetics thing and, you know, significant history.

On one side of the family of colon cancer, very, very significant. Like would totally qualify for testing and definitely would probably meet guidelines. And the feeling was the provider had mentioned, I think it was like an O-B-G-Y-N, like hereditary cancer testing. but they were kind of like, why would I do that?

There's no point in that. It's not gonna help me. It's kind of like they read on, a magazine about this person who tested positive for a PE and now they're just sitting and worried about getting Alzheimer's. why would I wanna know that I'm gonna be at higher risk for colon cancer?

I already know that. I don't need a test to tell me that. When I sat down, again, this was a very quick conversation when I was like, you know that you would get increased screening covered by insurance if you tested positive and even if you met with a genetic counselor, it may increase your screening guidelines and the frequency of that.

You know that right? No one ever explained that to me. Like, that this could save your life and that colonoscopies are an incredibly effective way of screening for colon cancer. your reality doesn't have to be the reality of those family members. And it was like, no, no one explained that to me.

They just said, this is a test to tell me if I'm at a higher risk for colon cancer, why would I ever wanna do that? No. so When you're a GI surgeon or you are, gastroenterologist and you're listening to this and you're like, this is so obvious to me, it may not be obvious to your patient.

take the second to explain it or to just say like, Hey, I'm noticing that you're not interested in this testing or interested in this screening. Can you explain why? nonjudgmental, just getting curious and the answer may surprise you.

Natalie Richeimer (Host): And then lastly, to wrap our discussion up today, do you have any take home messages that you would like our listeners to remember from our conversation?

Josie Baker : first and foremost, you don't know who's in front of you always. some people look very visibly orthodox, some do not. so that's kind of important. The other thing is. We are individuals. So just because you've met me, Natalie, from the Orthodox community, you may not have met, Daniel or Sarah, who may have completely different views than me.

We're all individuals. Treat people like individuals. come with humility, but also understand that in my experience this community is, Grossly undereducated in the utility of hereditary cancer, genetic testing. And we as providers, it's our job to explain, not only the utility, but also the risk level. and I would say just keep doing the great work that you're doing and thank you for taking the time to listen about, a community you may encounter that you may not have known so much about.

And I'm always here to be a resource to anyone who wants to learn more about our community.

Natalie Richeimer (Host): Once again, thank you so much, Natalie, for being our guest today, and at this time We will conclude this podcast. Thank you for joining us for an episode of the 2025 C-G-A-I-G-C podcast series. Stay tuned for the next episode to come. Thank you to all of our listeners.