67 - More than Our Genes: Understanding Autoimmune Risk with Genetic Counselor Amber Sher

Becky Miller: Welcome back to Autoimmune Adventures. We're so glad you're here today, and if you've ever wondered why autoimmune disease seems to run in families or why so many of us end up with more than one diagnosis or even what genetics really means for our future with autoimmune disease, this episode is for you.

We're gonna talk about something we don't often hear discussed in medical spaces, the emotional identity, and even spiritual questions that come when we talk about genes risk. The meanings involved there. Today we're joined by Amber Sher, a certified genetic counselor with a background in cancer, prenatal, pediatric, and reproductive medicine.

Amber also hosts the podcast, Gods and Genes where she explores the intersection of science, faith, and healthcare, and how people make sense of their health stories. Amber, we're very grateful that you're here with us today.

Amber Sher: Thank you so much for having me. It's a pleasure to be here.

Alysia Thomas: So for listeners that may not be familiar, can you explain what a genetic counselor does and how genetics fits into healthcare?

Amber Sher: Yeah, absolutely. So as a genetic counselor, I hope families understand their chances for inheriting conditions that we might see running in families. And I help them understand what in health information we can gather from their genetic information. So that's a long-winded way of saying that genetic counselors provide information that a lot of patients might hold onto as, "this is my destiny," and we change that from, "this is my destiny" to "this is the information and here are the answers that we can gather from that."

We're trained in counseling and medical genetics to be able to interpret complex scientific medical information in um, ways that are gonna be useful for our patients. Um, and we're trained to meet with patients in the midst of their crises. And it's some of the, for, for many patients, it's some of the lowest points of their lifetime to have these diagnoses in front of them. And so we hold a lot of space for grief coping and um, we use the latest medical advances to provide answers as best we can, and we offer a lot of hope from that. Yeah,

Stacy Griffin: I love that is what you do. That is, that's really important. So I'm curious, what drew you into this field, and then eventually to starting your podcast, Gods and Genes.

Amber Sher: So what's funny about genetic counseling is it's a field that I found later in life, but I wonder if the field found me instead. As a kid growing up, there is this photo that my mom keeps. Hi, mom. If you're probably listening, so just giving a little shout out to her.

Um, there's this photo that my mom keeps with me at about eight years old and I have my hand raised to answer a question while I am writing down some notes. And I think that that photo encapsulates who I am. I've always been such a curious person. Um, perhaps to a very annoying degree, but I've always had questions about how, how did we come to be.

And I used to play in the creek in our neighborhood, and my favorite thing was to watch and like catch tadpoles. And I just loved seeing how a tiny form that looks like a, like a, a fish without any fins in its own lifetime, grows arms and legs, lungs and starts breathing. And it, it, it fascinated me to no end.

Amber Sher: And when I discovered that. Our development as embryos look so akin to that. I think I just fell in love and I couldn't turn away from that. So at this time in like high school or so, when I'm learning about human development and genetics, that is the first time that I had an experience where I finally found something that felt like it was my calling and I didn't know exactly where that would lead to, but I knew that whatever I wanted to do in my life had to involve genetics somehow. Um, just 'cause there was nothing else that really sparked that same level of joy and curiosity.

And, um, it felt like I had always had these questions. How do we become who, like, who are we? And genetics was saying. Here's the answers, and I encode them in four letters. And that, that is, that has always been really intriguing for me in terms of genetic counseling itself. Um, this wasn't a field that I had found until after graduating from college. And at the time that I had looked into it, um, I had already gone through university and felt rather, um, disappointed that I wasn't nearly as in love with genetic clinical, with genetic lab work. I, some people are great at culturing cells at maintaining, maintaining lines at running PCRs, but it didn't spark me with that same level of joy that I got from actually reading papers and hearing from patients themselves.

Um. Medical school was always like, maybe this will be a thing, maybe not, I'm not sure. Um, so at the time that I graduated, it was 2020. We were all in lockdown and I needed to start, um, asking myself some real questions about what did I want to do, um, with my life and. I had loved my clinical psychology class in college, but I didn't think I wanted to go down the route of therapy or um, clinical psychology.

So then again, I'm like, oh, no, what do I do? Maybe I'm just gonna put in genetic, I'm just gonna put into Google search, genetics and counseling. And it turns out there's a whole profession! So, um...

Alysia Thomas: Amazing.

Amber Sher: Yeah. And so then from, yeah, and it was, it was, it was, it was everything I fell in love with. It was this aspect of meeting patients where they're at and, um, and in essence in some way providing a level of counseling, but also, um, learning and getting to grow and constantly learn.

That's one of the presented challenges of this field is that we as genetics professionals need to be updated on all the latest research and information. So it can be a source of burnout. But in my kid brain that had always loved asking questions, it, the kid brain is still here. It's still like so fascinated with the world. I just, I thought like, this is perfect for me. So that's, that brought me to genetic counseling.

Um, Gods and Gene is another aspect too, but I can get into that later. I feel like this is a long answer as well. No, that's great.

Becky Miller: Yeah. So we will revisit that 'cause we do talk a little bit about your podcast later. So, but moving ahead, I guess, to autoimmune disease specifically, what does current science tell us about the genetic component of autoimmune conditions?

Amber Sher: It's something that is, um, so nuanced and we're, we're consistently understanding. So it's something where I'd like to start off by saying 20 years ago if I were your genetic counselor and if I were seeing patients for autoimmune conditions, I largely would be able to say, there's probably something here, but we don't know what we can test for or do about it.

Um. autoimmune conditions are ones that fall into what's known as multifactorial inheritance. So there are components of it that seem to be related to genetics. There's components that seem to be related to environmental factors, so they run in families because families have shared environmental exposures and that can be so many things we can and cannot control. Um, and then there's also this component of specific lifestyle things happening and things that, um, that we're not, that some that we understand and some that we don't.

So for a long time, and I think what's complicated, um, is. One could say it doesn't look traditionally genetic. When many people think about genetic conditions, they think about your biology class. Examples where one parent is, one parent is a carrier of a condition, a parent of the. Uh, the other parent's a carrier of the same condition. When egg and sperm meet, there's a 25% chance that a child will develop this specific genetic condition that is the case for what's known as monogenic conditions. Mono meaning one, and these are conditions that are controlled by one gene. These con, these, um, particular conditions tend to be rarer.

Amber Sher: Um, but for autoimmune conditions, they don't fall into that category. They fall into something known as polygenic conditions, which means that instead of one gene controlling something, and so we can specifically look at that target and analyze it, it turns out there's many, many different genes that are all playing a role together, and their specific changes in combination of those changes could play a factor into someone, um, developing the condition.

So what that means for analyzing the genetic components of. Autoimmune conditions is that it's complicated and there's a lot of nuance. And 20 years ago when we were running genetic panels, IE looking at only a few different genes, for any one person, we wouldn't have had that level of information. But what's incredible is that the rapid advancements we've made in our genetic understanding of these of the technology that we use and the understandings that we have about autoimmune conditions means that we're identifying many more of these multiple gene locations, that we can then combine that information of changes to give people more solid understanding about their risk, um, to develop autoimmune conditions.

And, um, it can give us more of like a lifetime calculation risk. How helpful is this risk across a, like how accurate is it, how helpful is it? I think we still need more data to support until we get very clear, consistent answers across every ethnic group. However, it, it is really fascinating to know that even in today's time we have, um, the technology for, um, people's entire genomes, all of their genetic information to be sequenced. And then we are, we're getting as much information as we can from that.

Alysia Thomas: So, so cool. I feel like you touched on this a little bit, but a lot of our listeners notice that autoimmune disease seems to cluster in families and not always the same diagnosis. So why does that happen?

Amber Sher: That's a great question. This goes into, um, the environmental and genetic factors that play into, uh, managing with autoimmune conditions and autoimmune conditions have a third aspect. It feels like there's this tri, it seems like there's this trifecta that needs to occur for an autoimmune condition to arise, which is there can be these multiple genetic factors.

We're still not very sure how they play out. Um. Just because one, a parent has a condition does not mean that their child will necessarily develop it. It's just, it's a piece in the puzzle. Um, then there's the environmental factors. And again, this is things that we do and don't control. Um, certain exposures in our lifetimes, certain factors of stress and our grandparents stress. We were talking about this a little bit in my last podcast, but things that, um, modify how our genome is, um, transcribed or what is expressed of our genetic information and how that interplays with the environment, um, with other factors, and then also the immune regulation system. The fact that autoimmune conditions arise as there's a response to our immune system, something goes rogue and there is a cell that starts, there's a piece of our immune system that identifies healthy tissue is bad. I need to start destroying healthy tissue.

Amber Sher: And that immune regulation system is never supposed to falter. And so what aspect there is going on to get that, to make that system awry. And so it's with this trifecta of experiences that we get, um, autoimmune conditions happening. So, with that being said, um, the cluster and appearance in family seems to be that there's perhaps elements of each of these three components that, um, arise in families. And one is we share a similar genetic information with our family members. Um, and so there could be shared genetic components too. There's shared environment. We eat the same food, we live in the same areas, we have the same experiences. What's going on there? Third, there could also be some factor of shared togetherness, some sort of shared aspect or of immune regulation systems that we're still trying to understand how much of this is controlled and affected by the other two, um, environment and, um, genetics. But like, what, what, what's going on there as well? Could also be shared amongst families.

Becky Miller: Mm-hmm. I think that's a really good explanation. So probably one of the ones that I know talking to people, um, they get really concerned about is if they see that they're positive for a specific kind of gene, they get very nervous because they hear genetic and they immediately think inevitable. Like, "I'm gonna get this no matter what." Can you kind of give a brief explanation of genetic susceptibility for people?

Amber Sher: Yeah, absolutely. Um, I think this is a great, I think this is great to point out, not just for autoimmune conditions. There are so many conditions where genetic susceptibility arises. So this is kind of something where, again, in our high school biology classes, we might've learned that if you have this, what was the terms used genetic mutation. But it's a change. If you have a change in your genes, you're gonna get a condition. And when for some that is the case, but not when it comes to autoimmune conditions and not with our most, uh, common conditions.

So instead, how, I like to think about if a patient receives a positive or, um, a concerning finding for these genetic factors that play into autoimmune conditions. Think of it as a piece to a puzzle. And there are so many other pieces aside, even from genetics that we need to put together in order to trigger the, um, autoimmune event. And as we've talked, as I've heard you all talk about before on your podcast, which, um, I need to dive into deeper as well on this research.

But so much of autoimmune condition susceptibility is preventable. And think of your genetic information as a data point. It can help you guide and know. This is what I need to be careful of. So this is what I need to make sure of. And, um, this is what I can control in my diet and my regular habits. Um, however, having then that genetic susceptibility doesn't mean that someone is going to develop this condition a hundred percent of the time.

Amber Sher: Um. And, um, I think that with time we'll get so much better and then being able to provide a lifetime risk number could be so helpful for people. Um, so that way they can see that we currently have that kind of data available for say for other multifactorial conditions, like the more, the most common causes of cancer tend to be multifactorial, a combination of many genes and many different genetic factors there, the environment, um, may playing a factor and then using that data, using our own personal health input, we can develop, we can generate a lifetime risk score.

And I've been presented that data about my own cancer risk 'cause there's some concerning family history. But it was so cool to see that like, oh, my risk is below 20, my risk is below 20% in my lifetime. And numbers are... while numbers are statistical and they do seem very concrete, they're also very subjective. So what that means to a person can feel so different for everyone. For me, I felt so, I felt very comforted seeing like less than 20%, more than 10% realistic, but wow, like that's a lot less than I was expecting. Um. So having information like that is how I would love for patients to be able to consider their own, um, genetic, um, if you get a concerning finding on a, on something genetic to see it as that it's, it's data. It's not, um, prophetic. It's not definitive.

Becky Miller: It, it's not like, yeah. Well, and it's helpful in making decisions because I, um, you know, as you and I have talked. I, I was, I am BRCA1 positive. I had breast cancer, but I also had endometriosis and some other issues. And when I was going through cancer, it kind of came, I got the recommendation that I might want to consider with all of my girl problems, my female problems that I might wanna consider hysterectomy. And it was a hard choice for me because I hadn't had kids and I wanted to have a family, but I looked at the risk that was involved there and that was one of the things that was, like you said, with some cancers, they actually have the percentages and it's like, okay, you know, 78% chance I'll get breast cancer. I did. Then still a, a very high risk of getting ovarian cancer. And I already had these other problems. And so even though that's not a happy example, it was, it, it helped me make a very informed decision that I felt confident and felt like I was making the right decision, because I knew what my chances were on that.

Amber Sher: Mm, absolutely. And again, these are your decisions to make. These are our decisions to make as patients. This isn't something that, um, is also going to be, if you get this information, your doctors are gonna tell you the exact plan and you have to follow it. This is ju... this is, um, stuff that, and that's the role of a genetic counselor too, is emphasizing that this is your health information that we're providing. And this is for your decisions.

Alysia Thomas: Yeah. That's, that's what I was gonna say as a genetic counselor, I can see how that would come in very handy for somebody in that situation. Like that's, you're, you're doing God's work. Because that's a, it's a complicated thing. It's, it's an emotional thing. There's so many things that are involved in making those decisions.

And I remember when Becky made that decision and it was a heart wrenching one. Um, and. When you take into account all the things and you have somebody who can look at it from a little bit of a subjective point of view, um, it's, it's helpful.

Amber Sher: Yeah,

Stacy Griffin: I would agree. Well, you had mentioned environment as being one of the pieces of the puzzle.

Amber Sher: Mm-hmm.

Stacy Griffin: And so my question is this, how do genes interact when you have stress or infections or hormones or trauma that are acting up? Because our community has all of those things often, and we talk about it often. So what. What is your take on that? How do genes interact with these kind of issues?

Amber Sher: You know, that's such a great question that I will caveat like a little asterisk of, we still need more research.

I will start, start by saying that, um, when, like when we zoom out and we think about um, our bodies, our bodies are made up of billions of tiny cells and um, in each cell we have our genetic information. All of it together is called our genome, and that is where we get the strands of DNA and a long strand of DNA can make a gene. A gene is what eventually becomes a protein. And these proteins build every component that is needed for all of your cells and to, to make who you are.

Um, so people can ask like, okay, so does stress change our DNA? Is that where this changes? And. The genes in our bodies don't change with stress, but what does happen is how often does a gene become a protein is determined by signals in our bodies, and those signals can change with stress. These are called epigenetic modifications, epi meaning outside of. Um, so these are changes that don't affect the DNA form itself, but instead they do what we call it turning on and off.

Amber Sher: They turn on and off the regulation of certain genes. And with that, um, we know that not only, uh, does can stress change these, um, cons, uh, we know not only can stress and environmental factors change the...whether or not these genes are regulated to be turned on and off. But we also know that these modifications are actually passed down.

And there have been studies about individuals with post-traumatic stress dis, disorder, PTSD, who have de, who have developed certain modifications due to their experience of these genes being regulated and those regulations were passed down to their children even when the, their children did not have the same PTSD experience.

And so that this highlights how, um, this highlights how there are certain environmental factors that do play a change, not only for our genetic, not only for our bodies, but for, um, our children and could and so on. Um, and when...it seems that current early research seems to suggest that their, um, therapeutic interventions can also reverse some of those modifications, um, which is fascinating. You know, it's, um, it really shows that there's this interplay. Not only is there our DNA, um, and kind of this information that we have passed down, but there's also how that interacts with our environment and our experiences. And, um, if anything, it highlights that there is also then so much that we can do.

Um, I know that like, presenting this information can feel like, oh my gosh, so now we're just destined forever and ever for bad things, and what can I do? But in fact, we, we have a lot of, we, there's more control here than we might even realize. And as the research continues to highlight, I think we're gonna recognize just how much, um, certain lifestyle factors can change these.

Uh, these...

Alysia Thomas: Yeah, yeah. I was gonna say, I think that's ki it's a, it can be overwhelming, but it's also kind of empowering.

Becky Miller: Well, we're, we're coming back to Gods and Genes. Your, your podcast that you recently started. Um, you explore how people make meaning at the intersection of science, faith, and health. But we wanna know, um, what that means for you personally.

Amber Sher: Yeah, absolutely. So I'll share then a little bit about, um, how Gods and Gene came to be. So I, um, grew up in, uh, an unusual background. Um, my mom was a born again Christian at an older age, and my dad is an atheist. So that meant growing up that on one Sunday morning I could go to church and hear about Jesus as my Lord and Savior. And in the same Sunday afternoon, I'd watch a TV program with my dad on Richard Dawkins debating why religion is a ploy to control the masses.

So, as a child, I was getting listening, right? As a child, it was a little confusing. However, it, it was very confusing. However, it developed this sense of so much empathy and understanding for the human experience and what defines us as, um, spiritual beings, and what, what would that even mean? And so I've come to respect and understand a lot a, about individuals from many different faith backgrounds. And I think that while it wasn't their intention, it definitely just made me more fascinated in the subject of the human experience with, um, religion and, um.

Growing up, while I did know that I wanted to be involved in genetics, I did have these own personal reflections and tensions about the role of a healthcare provider in embryology and specifically elective terminations. And now I know so much more nuance about that conversation and my own opinions have changed; however, I also know that there's so many supports for physicians at any end of the spectrum of belief on that or, um, personal like, um, comfort and discussing that. But um, that was something that I had to personally reflect on as well and consider where will my faith and my love for science intersect?

There were some leaders and mentors as well in this space. Dr. Francis Collins, um, has been a, um, like a huge inspiration in knowing that we can navigate these conversations, um, and see how faith can compliment our scientific understanding and that there are bridges that can be built, built between faith and science. Um, Francis Collins was the former NIH director, um, and he is a geneticist who was. Pivotal for the Human Genome Project. He's actually recently written a book, the Road to Wisdom, and it was such a warm and like incredible reflection on science, his journey in the human genome project and his faith. So I highly recommend it for anyone else interested in these spaces.

Amber Sher: Um, but that, that was really, um. I've always known that I've had this interest in, um, religion and spirituality when I fully embraced that and made, made space and time for it. Um, so when I was considering my graduate student research project, I was posed a very interesting question from my associate program director, but I would highly recommend it for any graduate students. Um, thinking about their own research, and she asked me, and this is my first year of genetic counseling school, she asked me, "Amber, if you weren't going to be a genetic counselor, what would you be doing?"

And from your associate program director, you hear that and you're going, is this a trick question? Like, what is the, but she, she was honest and she was authentic and honest, and she just wanted to make sure that I was gonna pursue a passion project of mine for my graduate research. And when I opened up into these conversations and told her about. My own personal reflection with health and religion. And I just said very honestly, "You know, I think I would've been a religious scholar. I would've gone to seminary school."

You know, and so that's what really dove into more conversations about, um, "Well, what, what do you think that looks like for patients? And so you've had these faith struggles with, um, health and science.

Do you think your patients have?"

Like, and, I hadn't thought of that before. And then I look into the research and there's whole fascinating, um, fields about this and how it intersects with bioethics. And, um, I realized that this is, um, something that I wanted to add to the, more of the research. So I started my, I did my graduate thesis project on genetic counselor's perspectives of navigating religious and spiritual conversations. So I asked them, not only do you, are you prepared for this, but what are these specific conversations you're having with patients? 'cause I wanted to evaluate is our training in school and our experience is preparing us for what we actually see in the clinic. And I had really fascinating answers, but one thing that came up was genetic counselors were asking such incredibly nuanced, specific questions and they were looking for answers from religious leaders, from clergy and there was... then they were like, oh, well I wonder what I'm gonna be able to do, right?

And I'm sitting here thinking, I know so many clergy, I know so many people who would be fascinated at least to talk about it or who would know someone. And I think I just have to make these conversations public somehow. Gosh, I wish there was a way to make conversations public. I think that's called a podcast. So that's the inception of Gods and Genes. It was, um, I took a stab at, I decided instead of thinking about everything that could go wrong, I thought about what could go right. And that really brought about after I had graduated and had some time, um, bringing this to fruition.

So, that's, that's a little background on, um, what came to be. And, um, we're still such a young podcast, so we could definitely use more people. Um, thank you all so much for being on the episode as well. Um, but we could definitely use more people and more guests and, um. And yeah, I hope that I've had a lot of really positive response. I've been very surprised with how interested other people are, but I guess I shouldn't be.

That was reflected in my research too, that people are really interested in these conversations.

Alysia Thomas: We wish you so much success. I, I think it's interesting as well, so I think it's a and and not something I would think to put together. Like what? I remember when Becky told me about you and your podcast, and I was like. That is so interesting. But I can see how that would totally work. Like I can see how that would be a really interesting, uh, it would be a, a platform for a lot of interesting conversation. So I love it. I think that's awesome.

Becky Miller: So we'll be subscribing.

Alysia Thomas: Yes, exactly. A little shifting gears, um, as we get close to wrapping up. One, one of the questions I was curious to ask is because I, I personally, this is an issue for me for parents living with autoimmune disease, fear about passing something onto your kids. In my case, knowing already that I've passed some things onto my kids, um, that that's a heavy, that's, that weighs heavy on me. So how do you suggest navigating those concerns?

Amber Sher: That's a, that's a great point. And I think that. When, when I was really reflecting on this question, I just think that the first thing that came to mind was, um, with a lot of grace. I think that we, um, need to recognize that, and I know for some people this sounds so different. Um, genetics are not something we control. These things happen at random. Um, some people are very comforted by that. Some people are like, "Well, it still doesn't change reality."

Um. But first and foremost, I would say that there is so much burden and pressure to be a perfect parent when the reality is we're doing the best we can with the information we have. And when it comes to autoimmune conditions, one caveat that I would say for a parent who doesn't know, like who's worried about their child developing, but we don't know. And, um, how high is this risk? Um, for something like lupus where the general population risk is about one to 2%, that risk increases from one to 2% to eight to 10% when there is a parent affected.

So. Again, numbers are also subjective in some way, right? Like, how does that number personally sound to you? But for some it could be very comforting to know that number isn't a hundred percent right. Um, and so there are so many other factors to consider when, um, navigating an autoimmune condition and onset that I think that, um, when it comes to the equation of heritability. Um, parents I hope do feel that sense of relief in knowing that the, their risks are, um, not maybe as high as they might be perceived, or as high as it might look when you initially look at a paper.

Amber Sher: Um, with regards to, um, the sense of guilt that a lot of parents can feel, um, I think it's so important as providers to sit with parents in that feeling and to really understand, um, how, um, how is this manifesting? And, um, and to be present with our patients first and foremost. Um, then with time and, um, depending on the specific situation, I think it can help so much to talk to other parents in other groups. And to not isolate ourselves, but to recognize that if we reach out, we're going to find that there are so many other people in our sphere that have, um, that have rare conditions, um, that have, um, autoimmune conditions.

There's 10% of Americans live with a rare, with live, with a rare diagnosis. And it doesn't sound quite right, like how does that work if it's rare, but there are so many and there's such...while it can feel like this is so much, I hope it really takes away from this feeling of like isolation, that we're not living in a vacuum, but there's a lot of other supports, um, and people around.

Um, so yeah, so that, that, that would be some of the considerations that I would take, um, into account for, um, a parent wondering about this for their own child. Um. And, um, yeah...

Alysia Thomas: Mm-hmm.

Amber Sher: Go ahead.

Alysia Thomas: I was just gonna say, as you were talking, I had a re...I had a memory of, um, our mom when I, and, and she had a lot of guilt over passing on the genes that she passed on and we as children, when she would express that, I remember specifically one time on the phone - and I remember telling, I was having a bad, bad fibromyalgia flare, and I was just miserable and I was talking and I called my mom so I could cry, you know? And she was just, I, sh...I feel bad now because I made her feel bad unintentionally because I was feeling miserable. And you know, it's now looking back in hindsight, it's ridiculous. Like, I call her to cry and she feels bad that I'm feeling miserable because she passed on these terrible genes. And I'm like, that's ridiculous. Why would you feel bad? You had no control over that. You know, the whole thing is, is a little ridiculous when I look back at it. But for her it was very real.

And for me as a mom right now, it is very real. I have to remind myself if I took, if I got these genes from my mom, that's just one part of the things that I got from my mom. I got so many other things, so much goodness from her. So many other things that she taught me that she instilled in me, that I inherited from her, and the autoimmune stuff is just one little blip.

It's one little thing, so I have to remind myself of that. Um, so, but thank you. Thank you for that. Yes. With a lot of grace. A lot of grace.

Amber Sher: With a lot of grace. Yeah. And genetics carry disease and they carry life. Right. And it's like that beauty of our lives is also in the same genes that can carry certain disease.

I, I navigate this too with my own mother, not with autoimmune conditions, but with, with other things too. I, I'm sorry, I, I interrupted. Um, Stacy.

Stacy Griffin: No, it's fine. All I was going to say is we have often said that, at least for ourselves, if we had been given a list of things that we were gonna have to deal with in order to be a part of this family, would we have still chosen to be a part of this family? And the answer has always been yes.

And I know that that is not everyone's story. I'm not going to say that it's everyone's story, but I can only speak to my own story, right? So speaking to our own story, it's something we've discussed. So I hope that parents can understand that. I hope that people can understand the people who love them, want them in their life. It's okay. Genetics is just a small slice of who any given person is, right?

Amber Sher: Yes it is. And I think that genetics being tied to our blood can make that feel a little disillusioning, and that's also where I feel like the faith aspect and personal beliefs and values does line into anyone's conversations when it comes to genetics, because it can feel like, no, this is entirely who I am. But we are so much more than our genetic composition. We are so much more than just the blood and the cells, and we, we are our consciousness and our morals and our values and our missions and our goals and, um, our personalities.

And, and the certain susceptibilities we have, you know what? It comes with it, it's, I feel like there's been, because of our mindset about how we look at, and I, I do be very careful with using, with the language that I use about conditions. Um, because a lot of times we phrased a lot of things around disease and it doesn't feel quite right because in the end we all have certain predicaments for certain, um, conditions and, um, some it manifests in certain ways and some and others it doesn't. Um, but they're all like cards in our hands. And so that's how I've always seen it. Instead of seeing like, this is my susceptibility to disease, it's, this is just, I have a lot more hearts than I have spades and I have a lot more, you know, like, and so that, that's gonna have its own balance, um, balancing things as well.

Um, as we move toward a world of genomic medicine where we're understanding not only individuals very specific. Genetic parts that like we can very easily translate to conditions, but as we're looking at the whole picture of a human, I think we'll come to understand just how nuanced and complicated that is as well. Um, so we're moving toward that. We're moving toward understanding and seeing ourselves beyond this, um, small picture, but we've got a long ways to go. So. Yeah.

Stacy Griffin: Thank you. That's fantastic. Alright. For listeners who want to learn more, where can they find your work or resources that you would recommend as next steps? What's the best thing for them to do next?

Amber Sher: Oh wow. Well, thank you so much. I am currently looking, I've recently graduated, so I'm currently looking for work as a remote genetic counselor. Um, when I have a position, I'll let you know, but for now, um, if you're looking for a genetic counselor near you, you can go onto to www.nsgc.org, um, and use the Find a Genetic Counselor tool.

Um, I can also provide more specific links as well for this. Um, but that will show you where there's a genetic counselor in your area, in your zip code area, and. If there's any trouble with that. I'm also part of a network of private practice genetic counselors. So these are genetic counselors that have expanded beyond, um, traditional clinics and hospital spaces because they see that there are areas of unmet need, autoimmune conditions, genomic medicine, fertility medicine in certain ways, all sorts.

So there's a really fascinating group of individuals. They also have a directory, and I will, I'm blanking on the name of the directory, so I'll include the directory and I'll, I'll send over that information, um, as well. Um, that, that, that can be a tool as well to find more genetic counselors. Um, and internationally, we're working on having better directories developed. That was a recent presentation at our last, um, uh, national conference and. I don't believe that the source has been made, but if it has, I will add that too. So genetics is important for everyone, not just those who can access it in America easily. Like I wanna make sure that we can get this to internationally. Um, and there are some fascinating and really incredible ways that genetic counselors are moving abroad. Um, so it's really exciting to see that too.

Becky Miller: Amber, thank you so much for this conversation. Um, I think this episode really reminds us that genetics is, like we said, just one part of the story. Not the whole story, and the meaning and the context and compassion can matter more or as much as the hard data.

Um, for our listeners, we're going to link Amber's podcast with her work in the show notes so you can continue learning. Be sure to check out the episode we recorded with her on Gods and Genes as well. It was very meaningful conversation and we're glad to have had it.

Remember, you are worthy of joy. Disease does not define your life. You do.

HELPFUL LINKS:

Listen to Amber's podcast "God and Genes" by clicking the following link and choosing your preferred podcast application: https://godsandgenes.podbean.com/