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.

Josie Baker (Host): Hello

everyone. My name is Josie Baker. I'm a genetic counselor at the Ohio State University Comprehensive Cancer Center, and I will be your host today. During today's podcast, I have the distinct honor in introducing our expert guests, Lindsey Walker, a certified pediatric genetic counselor at Children's Hospital Los Angeles. Our focus will be on providing care to the community of the Church of Jesus Christ and Latter Day Saints.

Lindsey, thank you so much for being with us today. Thank you for having me. Let's go ahead and jump right in. Can you start off by telling us a little bit about you and your community?

Lindsey Walker: Yes, of course. so I am a member of the Church of Jesus Christ of Latter Day Saints. And I know that can be a mouthful for people. That's our, church's full name. But some people may know us as, Mormons or LDS, just as kind of like nicknames that have come up.

Over the years. And so I wanted to give a little bit of background about why That is and why it's important to focus on our full name, And that really has to do with. kind of our history And then also our beliefs. so we are a Christian denomination And what sets us apart from other denominations is that we believe our church is the restoration of Christ's ancient church in New Testament times.

So the modern or quote unquote latter Day Church, was organized on April 6th, 1830 in Fayette, New York, and. At that time there was only six official members, but we've grown a lot, since then. now we're up to approximately 6 million individuals in the United States. Over 9 million in North American, over 17 million worldwide.

And the reason, going back to our nickname Mormon, that comes from a book of scripture that we read, specifically our denomination reads, along with the Bible, and that's called The Book of Mormon. And so especially. Because we are a prot church and a church that has missionaries that, go out and teach people more.

we use the Book of Mormon to not only set us apart, but really to help people to understand more about Christ. And I think that's where the important distinction comes in, that when people call us Mormons, of course, like we recognize that our church has a long name and it is, it's a nickname.

But that it's kind of taking away from our focus and many people get confused like that. We're not Christian, but as I mentioned, the official name of our church is the Church of Jesus Christ, of Latter D Saints. And so just something to be conscious about And we really appreciate everyone's efforts And we know it can be a long name, but, that's kind of some, information in general about the church.

We are not only, in the US and North America, but also worldwide, as I mentioned. of course the church started, or was, Restored in New York. but again, we have individuals all over the world in 160 countries and territories. it's just, through our history, through history of. Persecution, in the early days, many of the members needed to travel out west.

So this, when you think about like the pioneers in the 18 hundreds, many of them were members of our church who were persecuted and made to leave their homes behind and go out west. And so many people are still located in Utah. And Utah's current population is 65% members of our church.

and overall, Utah has 32% of all of the US members. so even though we're a small group, only about 1% of Americans identify as members of the church. definitely a high concentration in Utah and still enough that maybe, you. May or may not have known that you have interacted with members of our church either as patient's or as colleagues.

Josie Baker (Host): Thank you for the introduction, Lindsay. And when we are thinking about seeing members of your community in the healthcare setting, can you tell us a little about the community's views on healthcare and preventative care?

Lindsey Walker: So I would say in general, our views on healthcare and preventative care are. Generally encouraged from church leaders and generally accepted by church members. so a part of our doctrine is called the Word of Wisdom, which is a health code. That we follow that we believe has come from God to help keep our bodies healthy.

And so that includes things like not drinking alcohol, not doing drugs, not drinking coffee or tea. Things that can be addictive or harmful to our bodies. And so, there's restrictions like I just mentioned, but then there are also things that are highly encouraged, like getting enough sleep and, getting exercise.

As well as, you know, proper hygiene and eating nutritiously. so in general we're definitely taught to, take care of our bodies and to stay healthy. And so there's definitely like a general, encouragement to make sure that means you're also taking care of your health And that you're engaging with competent medical professionals who are licensed in their area of practice.

as well as of course. With counseling, with these medical professionals that you can also seek guidance through, through prayer. And, again, reading books of scripture, through, personal guidance that you can receive from God about what is going to be the best way to, take care of yourself, take care of your family's.

actually our, president of our church who is also our prophet and, main leader, he has a previous, profession as a heart surgeon. And so, while he's retired from this profession. Now, in general, he does speak about, health topics, while not exactly promoting any spoke. Specific like health screening? definitely, encouraging us to have good health and I would say in general we're pretty trusting, of the medical community.

But I will say in all of this and all of our discussion that we're gonna have today, that all members are not the same. We're not a monolith and, our members come from all over the world. Some people have a very long history of, their family being in the church, and some are maybe just new converts, And so they do not have that same medical history.

So they might have other cultural influences or other family influences that impact their decision. I'm just gonna be speaking a little bit from my personal experience, some research that I've done, but definitely not representative of all people. Just some things to consider. I thought I'd mentioned that as well.

Josie Baker (Host): And when we dive a little bit deeper into those medical decisions, can you discuss the infrastructure in your community when making medical decisions, if it's between surgery, medication, or even considering genetic testing.

Lindsey Walker: we do have some general guidelines that we have. as I mentioned before, seeking competent medical help, exercising faith, and I wouldn't say there's necessarily like, very structured infrastructure in our community. I know that there is in other faith communities. And so, we do have leaders in our community that are available to really discuss anything.

So I guess hypothetically in a situation where maybe you're considering surgeries or treatment or things, it's generally kind of left up to the individual and like that personal autonomy in the medical setting And also personal, Relationship directly with God, with Jesus Christ to be able to, pray, directly for, seeking those answers.

but as I mentioned, we do have leaders too. And so, in conjunction with personal, prayer and kind of seeking out, and pondering the decision that you might have to make, you can also go to your leader and you can ask them for. Not necessarily for medical advice, but more for advice on comfort, or like a spiritual guidance of how do I, get these answers on my own.

we also do encourage members to, Seek out blessings, which are given by authorized, individuals in our church that can, essentially like a special prayer, for healing, for support And for comfort. but again, recognizing that, Everything is in God's timing and according to, his will. And so even with these special blessings, even with blessings of healing, that we will accept God's will and, also do our.

end to impact, like whatever the treatment may be. Of course, we recognize that, you can't have the miracle without the effort that you put into it, so making sure that, especially if you're diagnosed with something like cancer, it just can't be prayed away. That. In conjunction with praying that you also need to get that, healthcare, whatever it may be recommended by your doctor and whatever you personally feel like is best for you being surgery or other treatment options, and I would include genetic testing in that as well.

Josie Baker (Host): And how does your community view the concept of genetic testing, even if that's between like an oncology cancer setting or preventative measures for hereditary cancer risks or even in a pediatric setting?

Lindsey Walker: I did a lot of. research for, the previous talk that I, was able to give at NSGC and, it's quite interesting when you think about our community as I described it before, started out as a very small in community with just a, few families and especially, those, focused on like, Western European ancestry.

people from England, Germany, generally who have moved, from Europe to, New York at that time in the us. and especially, another focus that we have in our, churches to, Have families. We know that families is the most important, unit in the community. we're really encouraged to, have those family units.

We believe that families can exist throughout eternity. meaning that, even after we die so forever. So there's really an importance placed on having family, having kids. there's a lot of history of having large families with lots of children. There's also an importance placed on record keeping and specifically like family history and genealogy.

And so with this background, there's actually been, a lot of opportunities for researchers, specifically genetic researchers to be able to not only, study different family groups and individuals. in our community. So when it comes to genetic testing, it's led to a lot of, discoveries of new genes like A-P-C-B-R-C-A one and KCNH two.

And so it's like through church support and these individual families, contribution to research that it's, proven to be a great benefit to these genetic research efforts. so I would say with that kind of history and background, I would say generally genetic testing is accepted and I think people really care a lot about understanding, their family.

They want to help other's, And so that might be some reason why they might participate in, uh, genetic testing. through the use of. Utah population database, family history and public records. of the church, there was identified an American founder mutation In attenuated FAP there was two large families that shared, one was in Utah, one was in New York, and they were identified to have a common ancestor.

And of the individuals that were tested, they identified a conserved haplo type surrounding their a PC allele. And so I think that there's definitely encouragement in participating in these types of, not only research, but in general of genetic testing. And so, not representative for all people, but I would say in general that people would be, pretty accepting of genetic testing, either in the cancer side of things.

Potentially in the pediatric side as well. there's a lot of different considerations when it comes to each of these different types of testing. when it comes to prenatal testing, there is a little bit more of hesitation, I think, because we also have a strong belief, um, for the sanctity of human life.

And, there is. It's definitely a lot of considerations that need to go into having an abortion. so I think in general people think, oh, well why would I do genetic testing if I don't plan on having an abortion? And so I think that's kind of where some education, if any of the different fields of genetic counseling, I think that that, piece, on the prenatal side of having the, education to know potentially what are the benefits that could be good for them, even just if it's to understand, more about a child before they're born and to make sure that they're getting the proper healthcare that they need, before they're born, even if it's not for abortion or

like family planning, purposes.

Josie Baker (Host): And it sounds like in your community, it's really encouraged not only to learn about those hereditary genetic risks, but also rely on faith and spiritual healing too.

Lindsey Walker: it's definitely like having both aspects working together and I would say if I had to choose one or the other to focus on, I think. one thought that I've heard a lot in our church is just that good information leads to good inspiration. And so you have to have the information, in order to, receive sometimes those inspiration or revelation, from God to be able to guide you in your life.

So I would say both of them are, equally important in our community.

Josie Baker (Host): So for our audience, a lot of us are genetic counselors or gastrointestinal providers such as gastroenterologists or surgeons. how do you think that we can better support individuals in your community when they're considering genetic testing and possible implications?

Lindsey Walker: when it comes to firstly even identifying members of our community who might be your patient's, I, do think that That is difficult, even for myself personally, there's not really any clear identifying characteristic that would be either like visibly seen, um. From like someone's appearance, or their way of speaking or thinking that you could even identify someone as a member of our faith community.

so I would just say in general just similar considerations that you would have for all of your patient's that, making sure that you're providing options, that you're not making assumptions about how someone would choose when it comes to, for or against genetic testing or for or against certain, treatment options.

Really making sure that, they're given equal opportunity to be educated, on the situation And that, all individuals need to be given the opportunity to learn about their options, whether for against genetic testing or for against certain treatments. one consideration I did have, that I was thinking about is, just coming back to, the importance of families in our community and, having children for many individuals is something that's really important.

And so especially in considerations of, removing reproductive organs, I think that can carry a lot of weight And that could be a very difficult decision. of course that's going to require potentially a lot of time and effort to make those decisions prayerfully, maybe even just to. Come to terms with the potential impact that could have, for their life or what they had imagined for their future life.

so I guess just, continuing to be sensitive to the potential impacts of genetic testing results or potential treatment options that some of these things are really ingrained and are an essential point. Of someone's identity, and their faith. And so sometimes when faced with decisions, it might be really hard that could be potentially taken away from them.

I guess just to be patient and to continue to have that empathy, for those hard decisions that might need to be made. Of course, a lot of times when it comes to cancer treatment, it's going to be pretty difficult, so I guess just. learning about, different faith communities. Even if we don't know exactly which faith community our patient's might, belong to that as we recognize And we understand the potential deeper impact that it could have for some, that we are able to feel that empathy and maybe connect more, with our patient's.

Josie Baker (Host): And then to wrap up our discussion today, do you have any take-home messages or any additional thoughts that you would like the listeners to remember from our conversation?

Lindsey Walker: Not everyone's gonna be the same. And I think that especially members of our church, we're so diverse in our community backgrounds, ethnicity, country of origin, experiences each person is, complex. And that in general, I think, learning more about different faith communities really does help us to deepen connections, allow for increased empathy, And we might not know everyone's backstory.

and honestly, when it comes to genetic counseling, we. don't really get that much time to spend with our patient's. And sometimes it's maybe only one visit, maybe two visits. We don't have this continued follow-up. So I would say that our, potential impact, especially when it comes to impacts on religion, might be smaller.

But I think that even if we can take something into our individual life, To when we're engaging with other's, when we learn about people, especially those in, the Church of Jesus Christ of Latterday Saints, that we do have some background, we can be able to come in and be able to connect with them further.

So two other things that, could be Take homes, or just other things that we haven't had a chance to talk about yet is that, when I was talking about some of the research that's been done in our community, I think it's important as genetic counselors to be able to recognize, both the contribution and impact, from certain communities in genetic research.

individuals in our church and especially from Utah, have made up a large portion. Of what we think of as like our reference genome And that while at the same time we can recognize that, we can also recognize the imbalance and lack of research for other communities and advocate for them as well.

and of course we know that. Several ethnicities or individuals with specific countries of origin, especially, black and individuals of color are not well represented in our reference genome. And I think that we can both recognize and be grateful for the research that we do have, but also seek to make sure that we're uplifting other communities, and making sure that we're including them in our research as well.

And the final, thought that I just wanted to add in as well, is that especially, when it comes to popular media, our church is sometimes portrayed in certain ways. for example, in the popular Broadway musical, the Book of Mormon, it's a satirical musical comedy about church missionaries. or maybe you've seen the recent reality television show, the Secret Lives of Mormon Wives.

And I think that especially from our church perspective, we don't, discourage individuals from, watching or consuming this media. a lot of members of the church also, watch them and think that they're. Very funny and lots of things to be able to relate to them. 'cause of course, you know, it is based in some truth And then takes a comedy spin to it, like in most, things.

But I think again, it just is important to. Think of individuals that are actually in this community as not as caricatures, but as people that are, complex and have, differing sides, differing levels of, devotion, or, religiosity, in their personal lives. And, when you do see some of these, TV shows or Broadway musicals that it's good also to just engage with individuals in the community to learn more about them.

And I think it leads to a lot of great discussions. I know I personally have had some great discussions, with friends who, watched the Secret Lives of Mormon Wives Reality TV show, And we were able to make a connection and. Allow them to learn much more. about our faith community, about me personally.

And I would just say don't be shy. Don't be hesitant to ask. Questions. And I think that in general, members of our community, we don't get offended by these questions. And we really like to talk, you know, like anyone, we like to talk about our lives and especially something that we think is, really important, holds a very special place in our hearts.

And so as long as we do it with respect and, lead to an open conversation, then we're more than happy to be able to participate. And that's why I'm so grateful also to be on this podcast and have the opportunity to, present at NSGC like we did, because I think so many people are curious, about our faith community and individuals, in it.

And so it's really awesome to have this open platform. I got some feedback, from individuals that attended NSGC also in our faith community that said that they were so nervous or they were so scared, about going to the talk, because they were curious, what are they gonna say about us?

What incorrect information are we gonna have to. explain to people or counteract. And so again, just making sure that we're getting our information from, a reliable source and being able to connect with individuals in that community, like, in all situations, is really important. So thanks again Josie, for letting me be on the podcast.

Josie Baker (Host): It has been a an absolute pleasure and thank you so much for all that you have been doing for not only us today, but for your community. and you know, at this time we'll go ahead and conclude the podcast. Thank you everybody 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.