The Chris Voss Show - The Chris Voss Show Podcast – Empowering Lives Through Genetic Testing with Dr. Matt Goldstein

Episode Date: March 20, 2025

Empowering Lives Through Genetic Testing with Dr. Matt Goldstein Jscreen.org About the Guest(s): Dr. Matt Goldstein is a renowned physician, scientist, and entrepreneur dedicated to advancing genetic research. As the CEO of JScreen, he is committed to providing accessible and life-saving genetic testing to empower individuals with crucial health insights. With a background in biotech, he has spearheaded significant initiatives, playing pivotal roles at entities like Tango Therapeutics and Neon Therapeutics. Dr. Goldstein holds an MD and PhD from Stanford University and completed his clinical training at Harvard Medical School. His dedication to proactive health management is deeply personal, influenced by the tragic loss of his eldest daughter. Episode Summary: In this engaging episode of The Chris Voss Show Podcast, host Chris Voss converses with the distinguished Dr. Matt Goldstein, CEO of JScreen, about revolutionary developments in genetic research and testing. Dr. Goldstein guides listeners through the intricacies of genetic testings, such as preconception carrier screening, which assesses potential hereditary conditions to better inform family planning decisions. He articulates the profound impact these advancements have on personal healthcare, influenced by his own heartbreaking experiences, notably the loss of his eldest daughter to a genetic disorder. The conversation delves into two primary testing services offered by JScreen. Dr. Goldstein explains reproductive carrier screening, designed for individuals who plan to start families, and hereditary cancer testing, meant to identify cancer risks through genetic markers. The episode sheds light on complex parenting decisions that may arise from these tests, strategies for managing genetic risks, and the potential of technologies like CRISPR to alter gene structures as future solutions. Packed with relevant insights on prenatal health, genetic testing's significance, and the latest advancements in biotechnology, this episode underscores the importance of proactive health management. Key Takeaways: JScreen provides accessible genetic testing that informs individuals about hereditary health risks, fostering proactive health management. The reproductive carrier screening mainly benefits those considering starting a family, while hereditary cancer testing helps assess cancer risks. CRISPR technology presents a promising future by allowing scientists to edit genes, potentially eradicating inherited diseases. Knowledge from genetic testing empowers individuals, enabling informed family planning and mitigating hereditary disease impact. Dr. Goldstein’s personal journey, marked by his daughter's passing due to Tay-Sachs disease, highlights the essential value of precise genetic screening and its life-altering implications. Notable Quotes: "Prevention is the most powerful tool we have in healthcare." "CRISPR technology is an incredible advancement that allows us to cut and paste DNA." "The ability to use genetic testing to inform family planning decisions is an incredibly powerful technology." "Nearly everyone will carry a variant that makes them a carrier for some disease." "Our daughter was born on our wedding anniversary, and before long, we began a diagnostic odyssey."

You wanted the best. You've got the best podcast, the hottest podcast in the world. The Chris Voss Show, the preeminent podcast with guests so smart you may experience serious brain bleed. The CEOs, authors, thought leaders, visionaries and motivators. Get ready, get ready. Strap yourself in. Keep your hands, arms, and legs inside the vehicle at all times. Cause you're about to go on a monster education rollercoaster with your brain.

Now, here's your host, Chris Voss. Hey, folks, it's Voss here from thechrisvossshow.com. You feel the bomb. There you go, ladies and gentlemen. Our only season that makes the show worth it to be shown. As always, the Chris Voss Show is the family that brings you the most amazing guests on this earth. They share with you their delicious stories, their lessons of life, the things that they've

gone through cathartic times sometimes to learn, and they bring them to you to help make your life better or else. I don't know what the or else means. It just always sounds funny when I say it. Opinions expressed by guests on the podcast are solely their own and do not necessarily reflect the opinions of the host or the Chris Foss show. Some guests to the show may be advertising on the podcast, but it is not an endorsement or review of any kind.

Today we have Dr. Matt Goldstein on the show. We're going to be talking to him about his insights and some of the things that he's done, developed and different things to help people and help himself in different things that they experienced in life. Dr. Matt Goldstein is a dedicated physician, scientist, and entrepreneur with a passion for advancing genetic research as CEO of JScreen. He focuses on providing accessible,

lifesaving genetic testing to power individuals with critical health insights with With extensive experience in biotech, he has led major initiatives including founding and guiding companies like Tango Therapeutics and Neon Therapeutics through pivotal clinical developments and strategic partnerships. He's a graduate of Stanford University's MD-PhD program. He completed his clinical training at Harvard Medical School and driven by both personal and professional experiences, including the loss of his eldest daughter to disease. He is deeply committed to JScreen's mission of proactive health management. Welcome to the show. Matt, how are you? Great to be here and I really appreciate the

opportunity, Chris. Thank you. Thank you. And do you want me to refer you as doctor through the show or just Matt? Matt's fine. All right. Sounds good, Matt. So give us dot coms. Where do you want people to find you guys on the interwebs? Yeah.

So you can find JScreen's site at www.jscreen.org. And give us a 30,000 overview of what you do there. Yeah, JScreen is a service for patients, families, communities, as well as physicians that provides what we call genetic care navigation. It starts with education, education and information about what preventive genetics can do for you and when it is important. We offer access to testing, so a really easy way to sign up and get testing and then support to and through that process, including guidance and care from our dedicated team of genetic counselors to help you once you get your results,

figure out what you do with them. There you go. When do you do this testing? Is this prenatal or how does it work that way? Yeah, currently we offer two testing types. One of them is called preconception carrier screening. That is a test for about 250 different conditions that could be inherited by a child from their parents. And ideally that test is done before a couple

or an individual decides to get pregnant, but can also be done once an individual is pregnant. The other type of test that we offer is something called hereditary cancer testing or hereditary cancer screening. About 10% of cancers are inherited and there are certain genes that we can carry in our genome that put us at risk for those types of cancers. So that type of test is available and an opportunity for individuals really across an age spectrum to, to understand what their risk for cancer might be. So I could take that at 57 to see maybe what my risk might be.

Totally. Yeah. A hundred percent. What do people do when they get like, if they like, say you're in a relationship and you're like, hey, we should have kids, eh? And they're like, okay. And they go in for testing and they find out maybe one of the partners is like riddled with all sorts of inheritable issues, maybe, I want to guess say, I mean, what do people do with that information? Like people go, wait, we're gonna have to break out. I'm going to find somebody. Maybe I should on dating, I should start testing people I want to meet with first. Maybe I don't know.

Like here, take this test. Can you lick the swab really quick on the first date there? I, I'm not sure how popular you, you or how successful your, your dates would be. If that's your strategy, but you know. Well, not successful anyways. Thanks for the setup there, bud. Thanks for setting that up. Not like it's working any, so, you know, I mean, might as well throw one more log in

the fire. But, you know, I imagine, is there ways to, I mean, if you do genetic testing and you find out there's, there's potential issues down the road, I guess there's, can you do anything to try and mitigate those risks? I know we can't, we can't fuck with DNA yet, right? With the gene, genome? I don't know. Yeah, it's a really great question and an important question and one that is obviously evolving as our capabilities medically and scientifically get better.

I think maybe the first thing is that nearly everyone will carry a variant, a mutation in some gene and make them a carrier for some disease. That is almost a universal in some sense. And in most cases, that what we call carrier status, that mutation or that variant in your genome doesn't impact the individual themselves, doesn't put the individual themselves at risk. On the reproductive carrier side, the majority of those diseases require a child to inherit a copy of the variant from the mother and a copy of the variant from the father. So they have to have two of those abnormal copies of the gene in order to have the disease. And the real power of this testing is that

if you are able to test both the mother and the father, and identify that that couple is carriers for the same disease, that then there are things you can do before the pregnancy, potentially during the pregnancy, and obviously after the pregnancy if the child is affected to know the risk, to mitigate the risk or if you do choose to have a child and that child is affected to treat that child early and intervene as early as possible. I think there, to put a sort of specific point on it, there are a few different things you can do

if you find out that you are a carrier couple. So obviously you could decide not to have children. That's one decision. You could decide to adopt. That's another strategy. There's a very powerful technology within the IVF space, the in vitro fertilization space called EGT or pre-implantation genetic testing where once the embryo is created from the father's

sperm and the mother's egg, you can test that embryo to see if that embryo is affected and then make a choice about which embryo you choose to implant. And so you can implant a healthy embryo and ensure that that embryo does not carry the disease. And that's an incredibly powerful technology that my family has used itself and I'm happy to tell you the story there because I think it's an incredible demonstration of that. Please, please do give us the rundown on what the proponent was behind this in your personal experience.

Yeah. So my personal story and really what brought me to this work is the story of my oldest daughter who you mentioned at the beginning passed away. My wife and I are both Jewish and there are a number of diseases that are more prevalent in the Jewish community. One of them is called Tay-Sachs disease. It is a devastating disease that is a neurologic, neurodegenerative disease. Children with this disease, with the infantile form, usually die between the ages of two

and four and there's no treatment. We can screen for this disease using preconception carrier testing and both my wife and I had testing before we decided to start a family. My wife got her results back and she was told that she is a carrier for Tay-Sachs and I got my results and told that I wasn't. And so because with that information, we only had one carrier between the two of us, we thought that we were okay. And we got pregnant or my wife got pregnant and gave birth to our first daughter, Javi.

She was born on our wedding anniversary in 2018. And she was beautiful and strong and developed normally for about a year and then at her one-year appointment she started to have some developmental delay and that sent us down this diagnostic odyssey trying to understand what was going on. We saw a bunch of different physicians, we had her in physical therapy and occupational therapy and unfortunately on December 17th in 2019 she was about 15 months old. We got the devastating diagnosis that she had Tay-Sachs disease and we were baffled because we had gotten carrier screening. It turned out that the physician

who ordered my test ordered the wrong test and misreported my carrier status. Oh my god. Which is, you know, inconceivable, inconceivable and should never happen. And my wife was actually 11 weeks pregnant with our second child that day. And so the next afternoon we were in high-risk OB and she got a test called the chorionic villus sampling. It's kind of like an amniocentesis to test the fetus to see whether she was affected. And that fetus is our second child, Kaia. She is a carrier. She has my mutatation. And she was born about six months after that diagnosis.

Javi, our oldest, passed away in January of 2021. She was about two and a half. And that experience changed our life and obviously shattered our world in many ways. And about a year after Javi's death, my wife turned to me and said, we should have another kid. And we went down the path of IVF and we used IVF in this technology called PGT. And we have a third child, a son, his name is Ezra and he doesn't carry either

mutation. So Tay-Sachs is gone from his lineage, which is incredibly profound and just an unbelievable demonstration of the power that we have in medicine today. And I'm grateful for the opportunity to share that story and I hope that it serves as a helpful example for your listeners. Yeah, thank you. Yeah, heartbreaking to know, you know, but at least we, you know, there was a time where we didn't know or understand this stuff. We didn't have access to, I guess, the data as it were. And now we do.

And so we at least have a little bit more empowerment or at least we can say, okay, this is why this happened. And then we can work to prevent it in the future. But yeah, definitely heartbreaking. And so now you help couples try and avoid that experience and try and make good choices. It's quite interesting. How do people work with you? Do they come to your clinic there or how does it work when people need to interact with you in your business. Yeah, we're a fully virtual program. We serve people in all 50 states.

And it's a pretty simple process. You can come to the JScreen website, sign up for either reproductive carrier screening or hereditary cancer screening, fill out some information about your family history and your insurance information, and then you get a test kit in the mail. It comes to your home and you spit into this tube and that's how we collect the DNA. That kit then goes back to the lab.

We've partnered with a genetic testing lab called Myriad Genetics. That's a great lab that's been around for a long time. They run the test, do the analysis of the DNA, and then generate a report. That report comes back to the patient, and then JScreen is there to provide support and guidance, answer requests, help with family members, and they're for, you know, immediately after the test, but obviously well beyond

that if there are any needs. Yeah. This is really awesome. I mean, you can prevent these things. Is there any testing you can do for future stupidity? Because I need that Friday for my test. We can work on that, Chris. As soon as I find it, I'll let you know.

You can be the first one in. I think the whole world needs that right now, actually. Yeah, I hear that. So yeah, we need all the help we can get out here, folks. But no, it actually would be the way if they could fix stupidity and make it so that people didn't have Dunning-Kruger's disease. They could solve the Dunning-Kruger's disease problem, we'd be in business. But no, this is really interesting and it's extraordinary that these things can be done someday. I imagine,

do you ever see a point in the future where we can muck around with DNA and where we could remove these sort of things prenatal? Yeah, there's actually an incredible technology that is available now called CRISPR technology and CRISPR technology is a technology that allows us to cut and paste DNA and the ability to use that tool to take out a abnormal gene and replace it with one that is functioning is something that is undoubtedly in our future. And we're already seeing the ability of versions of that in gene, what we call gene therapy to cure diseases.

So there are muscular dystrophies, which are devastating diseases for which there are now gene therapies that are available and can treat kids starting at very young ages and potentially even when they are in utero, when a woman is pregnant with a child. Is there a way to do gene changing where when they become teenagers maybe they go mute for those teenagers? That's a more complicated more complicated approach. Damn it. We need to work on these things buddy buddy. We need to solve the real problems right now. Anyway, not to diminish anything. Now, I notice on your website there's two different kits people can get, hereditary

cancer tests and reproductive carrier screening. They can either do both or whatever. I notice that they're fairly inexpensive. Is that the full screening that you get or is there a back fee? Yeah. So the way it works is there's an upfront program fee. That fee is $49. That includes a physician order, which every test needs a physician order.

And we have a third party physician ordering group that provides that order, reviews all the information that comes in and provides that order for the patient. And that costs $39 so the the majority of that upfront fee is passed through to that group for the order. And then there's a $10 program fee to JScreen which covers the cost of the services we provide. It's actually well below what it actually costs us to provide the services that we do, but it's required by compliance to charge something. And that's an important piece that we don't want the cost to be an access barrier for

anyone. And then individuals can either choose to use their insurance or to pay what is called self-pay or cash pay. Insurance for a lot of individuals will cover the cost of the test, but obviously there's huge variability in insurance and that can always be a challenge. One thing we try to do is to really help folks navigate that and we work closely with the lab, who is ultimately the one billing insurance to ensure that that's as smooth a process as possible. There you go.

Now, I have vasectomy, I'm 57, I don't think I'm reproducing anytime soon. I mean, there's always a chance that the vasectomy doctor said, he says, don't get angry with your wife, you come home, she's pregnant. You know, things can happen with this thing, but would, would it be behoove me to do the reproductive carrier screening just to kind of see if maybe there's any genetic stuff I'm disposition to. One of the things I need to do is go take my, uh, what's that one thing? The shingles vaccine thing. Would it tell me if I'm going to get shingles or maybe it might tell me

some other things that might pop up. The hereditary cancer test definitely, right? Yeah. I think the reproductive screen is obviously of highest yield for individuals who are thinking about starting a family. There are, you know, decent arguments that I think could be made for knowing what your carrier status is to inform your kids or other relatives who may be in that phase of life where they're thinking about starting a family.

You know, that information, we often say knowledge is power and that information can be tremendously informative. But generally speaking the reproductive carrier screening is is most appropriate and applicable for folks who are in the reproductive window and you were thinking about that. But as you said the hereditary cancer screen you know that is one that could be important and could meaningfully impact the kinds of things you might do to monitor or screen or potentially make changes to mitigate the risk of developing one of those cancers down the line.

Pete Slauson Yeah, I've had, there's been people that, there's been women that they have a high propensity for breast cancer, they'll actually have a preventative mastectomy, is that right? Dr. Ben Hicks Yep. breast cancer, they'll actually have a preventative mastectomy. Is that right? Yep. Done. And I always thought that was a little extreme, but I mean, if you got it, if you got a high propensity of it, you know, why take the risk, I guess? I don't know. Yeah. I think, you know, those are obviously incredibly personal decisions, but if, in

the case of what you're referring to, in the case of an individual who has a BRCA mutation, a BRCA mutation, which is probably one of the most well-known breast cancer risk genes, it also puts you at risk for The risk of getting cancer if you carry that mutation is 85%. It's high and by undergoing a mastectomy or removing your ovaries, you reduce that risk higher. And that is an incredibly profound and impactful thing to be able to do. Yeah, it's crazy. Anything more we need to talk about, about what you guys do and what you guys offer there.

I know you mentioned something about your wife writing some stuff that was very helpful. Yeah, my wife wrote a memoir called 57 Fridays. I'm biased. It's obviously a book about our experience with our daughter and it's a beautiful book. It's a beautiful and powerful story. It's obviously a tragic one, but I think it is one that has messages and learnings about how to live an inspired life and what it means to show up for people who are going through hard things, which as much as we try to hide from the tough stuff, it comes for us all at some point. And I think what my wife put together in that book and what our experience

was and continues to be is something that might be helpful for people who are experiencing or struggling with loss across any form or flavor. Yeah, most definitely, most definitely. Well, give people a final pitch out on how they can onboard with your site, how they can get to know you better, find out if they're fit and all that sort of good stuff. I think first, Chris, thank you so much for the opportunity to chat today. I really appreciate it. It's been a great conversation.

You made me laugh a few times, which I'm also grateful for as well. Ascreen.org is our website. It's where people can go to learn about preventive genetics and to get access to reproductive carrier screening or hereditary cancer screening for themselves and their family members. And it's something I encourage everyone to do, to learn about, to share with loved ones.

It can have life-saving impacts for you and your family. And prevention is the most powerful tool we have in healthcare. It is the most powerful way to ensure that we live well. And we, JScreen, are here to help you through that journey and make it as easy and understandable as possible. Pete Slauson There you go. I'm excited for what you're doing because, you know, it's just, it's interesting how the future works and what we're coming to and the technologies that are out there that

can save people's lives, make their experience life better, all that sort of good stuff. It's crazy what they have. I mean, it's just wild. And so I'm looking forward to, you know, better world, you know, better world, less disease. And maybe if we can just fix the stupidity gene, the Dunning-Kruger gene, if we can get that somehow DNA fixed, that'd be great. So there you go. Thank you very much.

Thank you very much, Matt, for coming to the show. We really appreciate it. Thank you for sharing your touching story. Thanks a lot, Chris for coming to the show. We really appreciate it. Thank you for sharing your touching story. Thanks a lot, Chris. I appreciate the time. Thank you. Thanks, everyone, for tuning in. Go to Goodreads.com, Fortress of Chris Voss, LinkedIn.com, Fortress of Chris Voss. Chris Voss won the TikTok, and he won all those crazy places on the internet. Be good to each other. Stay safe. We'll see you next time. And that should have a...