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 am a genetic counselor at the Ohio State University Comprehensive Cancer Center, and I will be your host today. During today's podcast, I had the distinct honor in introducing our expert guest, Shilpa Narayan, a certified cancer genetic counselor at Stanford Health. Our focus will be on providing care to the Hindu American community in the setting of hereditary conditions. Shilpa, thank you so much for being with us today.

Shipla Narayan: And thank you for having me. I really appreciate you being willing to speak on this topic.

Host: So, let's go ahead and just jump right in. Can you tell us a little bit about your community's view on healthcare and preventative care?

Shipla Narayan: I would say in terms of healthcare, our community has a pretty positive outlook on it. There's a high emphasis on education and on knowledge within the Hindu community. And so, seeking that out when they need any type of medical care is very important to them. So, going to the experts, whether that's a physician or another type of clinician, genetic counselor, to really understand how they can best take care of their health. So, I think they have a very positive outlook, fortunately, on the healthcare system. I think maybe it can be challenging to navigate as it is if someone hasn't grown up in the United States as with any other community. But overall, I think it is fairly positive.

I would say in terms of preventative healthcare, and I can get into more of this in later questions, I would say that for preventative healthcare, it's more put on the individual to take care of themself in terms of their lifestyle and how they manage their own health versus going to seek out medical care to learn about preventative healthcare and do the things that they need to do to be preventative.

And so, I think really they mostly seek out medical care only if there's "wrong" with them, so if there's a symptom that they're feeling, or the treatment that they do need from a medical provider. So, less going to medical care, less about the preventative aspect, and more about like the treatment aspect.

Host: And just to expand a little bit more with that responses, can you discuss with us the infrastructure and medical decision-making and autonomy in your community?

Shipla Narayan: So, I'd say when it comes to medical decision-making, I think it's less about autonomy than you would normally think about it in kind of under American culture. Since they really view medical clinicians, whether it's the physician or any other provider as the experts, they really look to them for more directive care and counseling. So, when making medical decisions, what's most important is what is this expert telling me, right? They're the ones with the knowledge, they're the ones with the education, and they're really-- you know, I could use the word like really blessed with all this information and to have this education. So, I'm looking to them to tell me what to do. And so, they are looking for much more directive care.

And then, outside of the medical field, I'd say that people that they look towards are more-- it would be maybe immediate family, so like your spouse or your parent. Or if you're an older parent, looking to your adult child for help, sometimes a sibling. So, those immediate family members to help with medical decisions. And definitely, but mostly rely on the clinician's expertise to tell them what decision to make and how to make it, because they really put a lot of trust within those experts.

Host: And when it comes to hereditary cancer, how does your community view the concept of genetic testing? Is it still relying strongly on the providers you're seeing, or has there been any other dialogue in the community?

Shipla Narayan: I want to reemphasize this-- and I'll say this multiple times, I didn't say it at the beginning, but I think we're a very heterogeneous population. I don't think I can paint everyone with a broad brush. So, anything that I'm saying here, you know, I'm not meaning it that I'm speaking for the entire community. Everybody is still an individual. And so, it's important to take cues from the person in front of you, and how you want to interact with them.

And so, I don't know if I could speak on saying how does the entire community view genetic testing. I would say most of the time, there are very knowledge-seeking. So, I think the knowledge that you get from genetic testing can really intrigue people and say, "Okay, I want to learn about these risks and understand the knowledge behind it."

But I also think, when it comes to things like hereditary cancer testing, I think because if someone is unaffected, they really want to say, "Okay, you know, knowing this, even if I have this, I don't have actually have cancer yet, or I don't have an issue." So, I think there's a hesitancy to do it just because they may be concerned about having to do screenings or having to do any type of preventative surgeries when they're not sick or when they don't have a medical reason to do so. So, I think the hesitancy really comes from having to seek medical care when there's not a medical reason to do so versus just because it's preventative. But I think that the interest in the genetic testing really comes from the interest and the knowledge of knowing the information.

Host: And, you know, I think this really opens up a dialogue for us to think more about like preventative care versus the now symptomatic care that we can see between different populations. Is there any other hesitancies in your culture and in your community against genetic testing in general that we should be aware of?

Shipla Narayan: I think another hesitancy I would say really could be the impact for other family members, for future children. Sometimes, thinking about it, I mean, we don't think about this all the time in the cancer space, more in the prenatal space or getting married in the future, right? And the prospect that that could have-- because marriage is very important, as it is in most cultures, I think. But getting married is very important to the culture and being "a good--" I don't how to say this in a better way, and this may offensive to people, but being a good prospect for marriage, right? It could be something that could hurt your prospect if they know you have a hereditary condition. And so, I would, say that's the other thing, is thinking about how other family members will view you, thinking about how it's going to impact your kids, impact future kids, impact future life-planning when it comes to marriage. I think that could be another hesitancy. Because I think, although, I would say I expand this to Indians, not just Hindus, but there's a very strong connection. Family is very, very important. And we hold them in high regard because we're a very communal environment, very communal, community-focused religion.

But I would say that when it comes to sharing health information, I think it becomes much more private, and that you don't share when you have a health condition, unless it's outside of maybe immediate family members or even sometimes in the case, you don't share with immediate family members. There can be parents who don't want to share with their kids that they're going through a health condition because they don't want to worry them for those types of things. So, I think the larger impact that hereditary genetic testing can have on the family can also be another hesitancy that's there. And for some, maybe Hindu Americans like myself who've grown up in the United States, that may be different just because of the education we have and maybe a little bit more progressive thinking of, "Okay, we want to be more open with sharing with other people." So, that may be different, but I think maybe sometimes with those who haven't necessarily grown up in America, or maybe older patients, maybe more private with the information, that could be a hesitant reason to not do testing.

Host: And has your religious community or leaders provided any guidance or support for individuals considering genetic testing for hereditary cancer and really thinking of those impacts for family members?

Shipla Narayan: Not that I have seen, and I don't know that there is a lot of knowledge about hereditary genetic testing within the larger religious community, or any type of discussion with that. And I don't know if that will ever happen. And this is just clearly my opinion because I don't think a lot of the patients that I've talked to and the people that I've talked to wouldn't really seek out advice from a priest or from a religious leader when thinking about these medical decisions. I think their main focus is on talking with their medical provider who's in front of them, because that's really the person that they believe has all the knowledge and maybe even seeking immediate family, like I mentioned. I don't think they would ever consult like a temple religious community or consult a priest to discuss these things.

Unlike maybe some other religions, and I've said this in the past, Hinduism doesn't have a lot of hard and fast rules in terms of what you should or should not be doing. There's really concepts like karma and other things that really can help guide people on how to live their life. But then, how people interpret those concepts is really based on the individual. So, there's never a rule book that I'm going to go to to say you can and cannot do this. It's really, "Here are the concepts to help live your life," and how you interpret it is up to you. And so, it's much more open in that perspective. And it's something I like about the religion is that it's open to interpretation. So, I think for that reason, there's not going to be a lot of direct guidance from a priest or a religious leader.

Host: Thank you for going into a lot more detail about your religious background and how the community, really, it sounds like, is family-focused when making these decisions. And I think one of the important questions that I have is how do you think genetic counselors and GI providers-- so this could be like gastroenterologists or surgeons-- how can they better support individuals in your community when they're considering hereditary cancer testing, or the possible implications and screenings that may come out of it?

Shipla Narayan: The best way to support them is really to take your cues from the patient. And so, I think a lot of times, as medical clinicians, we really focus on what can we do, right? We can do screenings, we can do colonoscopies for you, you know, if you're in the GI setting. We can do other types of screenings to help detect cancer early or prevent it entirely. And so, the real focus on what we can do right from the medical aspect. And I think a lot of questions that come from patient's is sometimes, "What can I do personally?" In terms of outside of just the screenings, "Can I do anything lifestyle-related?" There's a lot of focus on Ayurvedic medicine or other types of like more natural medicines to take or "What kind of diet can I have? What lifestyle, what can I do within my control that can help prevent cancer?"

And I think sometimes as clinicians, we're hesitant to give that advice just because we don't always have the data for it. But also, we're focused more on the things we have the data for, which is the screening. But I think it's okay to be open to having that conversation with a patient. Here them out and say, okay, if they would want something within their control, like having change in lifestyle or they believe that living their life a certain way so that they're doing, you know, good for themselves and for maybe developing good karma, so to say it's going to help them, maybe being open to listening to them and having that discussion rather than more dismissing it. I think that could be something.

And of course, emphasizing using the medical expertise to emphasize how important the screening still is, but still being open, say, "Okay, if you think this would be beneficial for you to pray at this time during the day, or to eat this type of food," as long as it's not hurting them. I think it's being open to those conversations, understanding that patients believe they have maybe more control over their health based on how they live their life than one might believe themselves.

Host: And then, to wrap up our discussion today, can you tell us any take-home messages that you would like listeners to remember out of our conversation?

Shipla Narayan: The two things I would say is, one, you know, I'm going to sound like a broken record, because I'm saying this again, is always take your cues from the patient, right? It's a very, very heterogeneous population. How one person from one part of India practices Hinduism is very, very different from someone from another part of India practices Hinduism. And that could be very different than from how someone who's Hindu American practices Hinduism. So, to come in with curiosity for a patient as we would for anyone else, and open to understanding what are their viewpoints, what may they be bringing, and that could impact the conversation, whether it be about genetic testing or about the screening and management, and not making assumptions or trying to do your best to not make assumptions during the visit.

And that's something I think we do for all patient's is our goal, especially as genetic counselors to come in with curiosity and not assume things or let our bias hinder us when we're looking at the patient in front of us. So definitely, trusting our counseling community to do that. And I've seen it a lot with the great physicians who do the same thing. So, definitely have a lot of confidence in people doing that. So, just to continue to carry that over for the Hindu population as well.

And the other thing I would say is also just in terms of there's not a lot of literature or data on the Hindu American population. And so, I would encourage us to maybe think more about getting more literature to understand this population better. The Hindu American population is continuously growing. Still a very small part of America. But I think, since we are a growing population, it would be nice to see more focus so we can have more data and understanding of this community. So, we're speaking more from the research perspective rather than just making assumptions or opinions based solely on our interactions with patients.

Host: Once again, thank you so much for coming and joining us today and talking about your community. And at this time, we will go ahead and conclude this podcast. Thank you for joining us for an episode of the 2025 CGA-IGC podcast series. Stay tuned for the next episode to come. Thank you to all of our listeners.