The Chris Voss Show - The Chris Voss Show Podcast – Emily Goldberg, Genetic Counselor for JScreen

Episode Date: September 20, 2021

Emily Goldberg, Genetic Counselor for JScreen jscreen.org

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. Get ready, get ready, strap yourself in. Keep your hands, arms and legs inside the vehicle at all times. Because you're about to go on a monster education roller coaster with your brain. Now, here's your host, Chris Voss. Hi, folks. Chris Voss here from thechrisvossshow.com, thechrisvossshow.com. Hey, we're coming to you on our great podcast.

We certainly appreciate you guys tuning in. Thanks for being here. We've got interesting guests on the show today. You're going to be amazed at some of the wonderful stuff she's going to share with us today. But in the meantime, go to youtube.com, Fortuna's Chris Voss, hit that bell notification and reserve your right to get notifications for the Chris Voss show on all new things we have coming out. Go to goodreads.com, Fortuna's Chris Voss. You can see my book. Of course, there's a giveaway going on right now. If you want to enter that, you can enter for a free autographed copy of the Beacons of Leadership book. Also, all of our groups on Facebook, LinkedIn, Twitter, Instagram, all that good stuff.

So you can check that out as well. Today we have Emily Goldberg on. She is with JSCREEN. She is a genetic counselor for the J-Screen program. She received her bachelor's degree in biology and psychology from Brandeis University and a master's degree from the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. She's been certified in the American Board of Genetic Counseling since 2011. Before joining J-Screen, she worked as a genetic counselor at Montefiore Medical Center in Bronx, New York, specializing in prenatal and cancer genetics. Her professional interests include education, teaching, and mentoring genetic counseling students. at the Albert Einstein College of Medicine and adjunct faculty at Sarah Lawrence College,

where she teaches embryology and reproductive genetics. Welcome to the show, Emily. How are you? Thank you so much. I'm great. How are you? Thank you. I'm doing awesome now. Did I get Brandeis University correct? Brandeis. You were close. Brandeis. Brandeis. Clearly, I flunk college. There you go. We've got a rundown on you. Give us the dot coms for where people should look you up on the interwebs and find out more about you. Sure. So anyone can check us out at www.jscreen.org. We're also on Instagram and all the other social media platforms at Get J Screened. There you go.

What is J Screen and what is it about? So J Screen is a national nonprofit and it's based out of Emory University, which is in Atlanta. And basically what it is, is it's designed to be a genetic information and testing organization. So people can come through us for genetic testing, genetic counseling, and really have an accurate way to get good information that can be about their own health or their risk for their children. And we're also trying to get out there in the community and provide education about genetic testing and some different topics in the area

so that people have access to affordable and useful information and testing for planning for their own health and for their families. So now I know there's DNA testing. I've done some of that. What is genetic testing exactly? So genetic testing is a big term and it can go from anything, what you might hear about online, ancestry testing or things like that. But in the medical field, there's a lot of different types of genetic testing that's available. So anything from testing during pregnancy or when planning for a pregnancy, through testing a child with a concern about a genetic illness, testing people later in life for genetic conditions or cancer risk. And the's, the field has really

exploded. So there are genetic counselors that work in cardiogenetics and neurogenetics. So it's a really big term and there's a lot of specialty within the genetics world. So people can seek genetic testing for hundreds of different reasons, depending on what's going on and what kind of information they might be looking for. Is there any way to testify new kids are not going to be that bright? Unfortunately, not so much. Look at the family usually. Tell my wife that's not going to work. No, I'm just kidding. So you do genetic counselor as your title there. What is that and how does that work? So a genetic counselor is a health care provider who's specifically trained in genetics, but also in counseling. Because as we'll talk about, there's a lot of things that can come in the setting of doing genetic testing that can really be emotionally charged. go through results with someone, but also to guide them through the entire process and help them

process what the information is, what it might mean for their physical or mental health, and really help them to understand what this is and what it means for them. So it's this combination of interpreting the medical information, making sure it's something that they can understand, because these are often really tough, complex topics. And then also providing it in a supportive and empathic environment where people are free to talk through some of these emotions and tough concepts that go with genetic testing. So you work directly with the people who are getting the testing, give them results and help them work through it? Yes.

So I've done my entire genetic counseling career in the clinical world. I spend a lot of time face-to-face with patients. There are also genetic counselors who work in labs and research and other roles that aren't quite as patient-facing. But in general, that is what I do. Wow. If there's going to be a genetic problem that may be in danger to the life of the mother, that sort of thing, I know there's all sorts of stuff they can screen for now. You guys are able to do that. Yeah, absolutely. So there's different genetic testing available depending on what someone's looking for.

How did the service become called J-Screen? Why did they choose that name? So J-Screen actually came from a community initiative that was based in Atlanta. So there was a family, the Golds, who have Ashkenazi Jewish background, and they went to their doctor before having their second child and did genetic testing because we know that for people with Jewish background, there are certain genetic conditions that are more common. And these aren't ones that affect the parents. So we have no way of knowing that people are carriers for these conditions aside from testing. But if two parents are both carriers for the same recessive condition, then anytime they have a pregnancy together,

there's a 25% chance of having a child with that particular genetic condition. So for all couples who are planning pregnancies, we recommend doing this type of genetic testing before getting pregnant so they know what their risks are. So they went and they saw their doctors between their first and second child and had genetic testing and no red flags came up. And their second child was born with a rare genetic condition called ML4. And it turns out that it was a more newly available test for people in the Jewish community, but it wasn't on the particular panel that they had. So they set out on a mission to create this community testing program that would be affordable testing, as many

genetic conditions as we could test for at the time so that other families wouldn't have to face the same challenges and would have the best genetic testing available to them. So it started with this local community and it was so successful that it ended up fairly quickly being launched nationally as J-Scream. So the J kind of stood originally for Jewish because it was targeted towards Jewish families and the the genetic conditions that are higher risk in that population. Oh, wow. All right. How does it work for people want to get screened? This is something I could put on my Tinder so that I can meet the right people that aren't going to have genetic things to match against mine sort of thing. Absolutely. So it's come a long way from then. So we now test for over 200 different

conditions. And this is our reproductive genetic testing panel. So even though it started with the J for Jewish community, now the testing, genetic testing technology has come so far and it's changed so much that it's actually recommended for all people having children, regardless of background, ancestry, because the testing can really find hundreds of different genetic conditions, regardless of if they want to get tested through J-Screen. Anyone can come through as long as they're within the U.S., and they can do it all from home. So this has all been by telehealth even before COVID put everybody at home.

Oh, wow. So people can come onto our website, which is jscreen.org, and they register for a kit. They can do it by themselves. They can do it with a reproductive partner if they have one. We work with their doctors to also get an order. And then they're sent out a saliva kit so that it comes to them in the mail. They spit into the tube. It gets sent back into

the lab. And then once those results are ready, myself or one of the other genetic counselors will review their results, set up a genetic counseling appointment and go through all the information with them. Now, so it's just a spit test on blood or anything. You don't have to take any of that. Typically it's just spit. Wow. And you can tell all that stuff about me from, wow. Yeah, it's pretty amazing. Science. It's really new. Awesome. So how does the testing work with your own doctors? So because we are a medical grade test, we like to do genetic testing in the setting of working with someone's healthcare provider. So when somebody registers, they put in their doctor's information,

and then we reach out to their doctors directly to get something like a prescription. So that way their doctor understands what they're being tested for. At the end of it, just if they were being referred to a local genetic counselor, they get a consult note, they get a copy of the results, everything gets sent back to the patient, and then it also gets sent back to the healthcare provider. So that way everybody's in the loop and they're aware of any recommendations that we might have. Would there any be, you know, let's say it's for instance, for me, and let's say I'm not

interested in having kids or, but maybe I'm concerned about end of life cancers or genetic issues I might have, or maybe I'm a high candidate for Alzheimer's or something. Do you guys, would that be of interest to me at all working with you guys? So we do two tests. So the first one is what's called reprogen. It's reproductive genetic carrier screening. So if you're not interested in having kids, the short answer is no. This one doesn't tell us anything in general about our own health. It tells us, could you be a carrier for something that you could pass on to a child who's born with a genetic condition? Now we have another test,

which is called CancerGen. As the name suggests, that one does give information about your personal risks for hereditary cancer. Oh, wow. So to give you a little bit of background. So we're born, everybody is born with different genes that are our natural protection against cancer. So they're on the lookout for abnormal cells that are starting to make mistakes and potentially grow. And these genes put the brakes on. They're like security guards. They're on the lookout for anything suspicious. They try to fix it before it becomes a problem. So it's this natural protection that we're born with. And in some families,

if one of these genes doesn't work right, then they lose some of that protection. So they're more susceptible to certain types of cancer, depending on what that gene should be doing. So by doing genetic testing, we can actually look at these cancer genes and tell people if there's something in their genes that we find that can make their specific risk for cancer higher than it is for other people. So is that why you see some families that have hereditary cancers and problems is because that gene keeps getting passed down? Yeah, exactly. So not all cancer is inherited, but sometimes we take a family history and you might see generation after generation of multiple family members who have had cancer, or sometimes they've been excessively young cancers. and we see it come down

through the generations. And that's a red flag for anybody in genetics, but there could really be something that's running in the family. That's putting that family at a higher risk. wow. That's crazy. But the good, yeah.

And the good news about doing genetic testing is once you know that's going on, there's more that you can do about it. So if we know that someone has a higher risk for ovarian cancer, and we know that there's things they can do that's going to be preventive and dramatically lower their risk. So it's not just telling someone that you have a higher chance for cancer. Good luck with that. It's you have a higher chance for these specific cancers. So let's talk about different

screening and preventive options that we can do that hopefully will keep you and your family healthy. And even for people who already have cancer, it can actually change what surgery they might have. They may be eligible for certain chemotherapy medications that really target that specific genetic change in their cancer. Wow. And then how long from when you order the tests until you receive the results? So usually it's a couple of weeks. So they go online, they order the testing. A genetic counsel reviews everything that comes in. So sometimes we're reaching out with other questions about something in the family history, or they mentioned a family member has had genetic testing before. So we'll try to get a copy of all of that. We reach out to their doctor's

office to get that order. And then once we have all that information, it's a couple of days to get them the kit in the mail. They spit into it, they send it back. And then usually in about three weeks or so, those results are ready for them to meet with the genetic counselor and go through everything. So usually from start to finish, it's a couple of weeks. And then the genetic counselor helps you understand the results and stuff. Exactly. Wow. How many of these tests can you get at one time? I want to stack them up. Yeah. So anytime you register for a kit, you have three choices.

You can do just the reproductive carrier screening test. You can do just the cancer test or you can do both together. Oh, wow. There you go. What sort of costs are involved in this? So J-Screen is a nonprofit. We have funding that really helps to subsidize the cost because genetic testing can be ridiculously expensive. And insurance companies are really convoluted in their rules about who they're going to cover it for and who they're not going to cover it for.

So J-Screen has a set program fee that people can pay. And then anything that's not covered by the insurance, if they have high deductibles or it's not covered, then J-Screen essentially picks up the rest of the tab. So patients pay this program fee and then there's no other costs associated with it. And that includes the testing. That includes the genetic counseling, any follow up. So for the reproductive carrier screening test, it's $149 if they submit insurance, even if the insurance doesn't cover it at all. It's $199 for the cancer gen test. And then if they want to do both together, it's $299 for the entire thing.

But we also do have financial assistance for people who can't afford it. We also partner with different organizations around the country. So sometimes local organizations are also able to subsidize it on top of that. Wow. That's awesome. That's pretty inexpensive. Yeah, absolutely. And you know, we just want to take away as many barriers as we can for people, whether that's living near a genetic counselor or having the ability to pay for it or not really knowing enough about it. So we tried to just take that all away and make it as easy as possible for anyone who is interested in learning more about genetic testing or who's ready to do it themselves. Awesome. And then the service is available to everyone, even though it started out as just the Jewish. Okay. Yep. So anyone,

as long as they're 18 and again, regardless of background, interfaith couples, interracial couples, yeah. Anyone who's planning, you know, for the repro gen test, anyone who's planning on having a biological child. And then on the cancer side, most people who are referred for genetic counseling, it's because they have a personal or family history of cancer. But that being said, we know not everybody with hereditary cancer mutations actually has a family history. So because we have that set program fee, regardless of insurance coverage, we encourage people if they're adopted, if they have a small family, if they don't have a family history, but they still want to be proactive about their health and know about their risk for cancer, we certainly encourage them to come through also.

All right. Awesome. Awesome. Do we cover the cancer gen service in full? Do we cover all the base on that? Then we touched on it a bit. I think we did. Let me see. So again, it's similar where you can register online. It's all done from home by saliva. We do collect a family history on everybody. So they're sent a questionnaire after they register. And that way we're asking about anyone in their family who's had cancer, how old they were, what type it was, because this is really useful to us in the genetic counseling visit because family history can have a big impact on cancer risk. So even if somebody does their genetic testing and they're negative for any genetic changes in all these genes that

we're looking at, it doesn't necessarily mean that someone is at a low risk for cancer. So if they have multiple family members who have had cancer, then we still may recommend during the genetic counseling appointment that they do extra screening or prevention or make different recommendations based on what's in the family, even if the genetic testing isn't the reason for those recommendations. Oh, awesome. It's good to have. It's really wild now that I can predict this stuff or at least get an idea of the odds of this stuff.

Yeah, absolutely. And I think it's important for people who have had genetic testing in the past. So genetic testing has changed so dramatically in the last certainly 10, but even really five years, that if someone came through and they had a history of breast cancer, and they came to my office eight years ago, really almost the only genes we would have been able to test them for at the time were called BRCA1 and 2. These increase someone's risk for breast and ovarian cancer. So if you remember reading the articles about Angelina Jolie when she came out and talked about her risk and she had preventive surgery for breast and ovarian cancer,

it was because of a BRCA1 genetic change. But we have a lot of families where they have breast cancer risk or ovarian cancer risk, and they've had BRCA testing in the past, and it was normal. And they think, well, it's either not genetic, or we don't know what the cause is. I really encourage those people to come back through and update their genetic testing. Because in those last eight years, we've learned about a lot more genes that are associated with cancer risk. The genetic testing is now a lot more genes. So when someone comes through the CancerGen test, they're actually screened for 63 genes in total that are associated with hereditary cancers. A big handful of those are breast and

ovarian cancer, but we also cover uterine, colon, stomach, skin, kidney, brain, a lot of other rare cancers most people probably have never heard of. But so for people who have had genetic testing in the past, I encourage them to come through because there's so much more that we can test for now that we may not have been able to give them an answer eight years ago about why their family history has so much cancer, but we may be able to do that now. Is there, is it something you should come back to every year or every other year, a couple of years? We get that question a lot. The funny thing is that our genes never change. So we're born with them. They never change in our lifetime. So there's

nothing different in terms of, I didn't have this genetic change yesterday, but now I do. But what changes is the technology and the interpretation of the testing and the genes that we know about. So sometimes we tell people it's been a certain amount of time, come back, see if there's anything else that we recommend for you. And this goes actually for both panels. So on the cancer side, as I mentioned, we may not have found the answer for them a couple of years ago or even now. And I'll say, you know what? Call me in three years. Let's see if there's any new testing that might give us more information for you that we don't have now. And then on the reproductive side, we tell

couples to check in and see if there's any updates to their genetic testing between every pregnancy. Oh, wow. It changes that quickly. It used to be 11, and then it was 18, and then it was 36, and then it was 100. As I mentioned, we're now at over 200. I think in a couple years, we're probably going to be at 500. So we always recommend that people circle back, not because their genes change, but because we're just better at testing for more and more things as our knowledge and technology gets better. So what do your customers feel about the service so far? What do they think? So our program has been crazy successful in terms of patient satisfaction. We send out a satisfaction survey to every patient that comes through.

And more than 98% of people had a great experience and recommend the testing to other people who need this type of genetic testing. And I think part of the reason for that is that on our side, we're a small group. We personalize all of our communications with the patient. We check in with them throughout the process. So that way we're answering questions along the way. We let them know any updates about their testing. The genetic counseling appointment is one-on-one or one-on with if somebody brings their partner or spouse or sister to listen in, we really take the time to go through all the information with them and make sure they understand it. And then they get sent

a copy of all their documentation. So that way, if they go see a different specialist, they can bring all that information with them. And they know that it's all up to date and accurate information. I should also clarify the fact that our testing, there's a lot of tests you can go out and order on the internet. What's called direct-to-consumer testing, which means it doesn't involve somebody's doctor, but they can go online and learn different things about their genes. J-Screen is a medical grade test. So it's the same level of testing as if you went to meet with a local genetic counselor. We use technology that is extremely accurate and comprehensive. So when someone is looking for genetic testing for their children or their cancer risk,

we recommend doing this type of testing as opposed to other types that you can go and do online, which is not nearly as comprehensive. All right. So what's your number one goal when people hear about you guys on the podcast today? So I think it's just we want people to have healthy families for generations to come. And we like to achieve that by educating people about genetic risk and how genetic testing can be useful. And then offering testing again, by keeping the next generation healthy in terms of risk for genetic diseases

and planning pregnancies, and also helping people understand what their cancer risks are, how they can use that information to benefit their health. And then because we share a lot of our genes with our family members, when one person comes through, that's also really useful information for other people in the family, right? So for their siblings, parents, children, that if we find that they have genetic changes, then a lot of times other people in the family too. We're all about genetic education and just making it

accessible to everyone, regardless of background, regardless of ability to pay, regardless of insurance coverage. We just want people to have access to affordable and accurate genetic testing and having that testing within the setting of a genetic counselor appointment so that they really understand what kind of information they're getting, what they can and can't find out from their genetics, and just give them that peace of mind and next steps. Wow. And then you guys are a nonprofit. Can people or groups donate to your organization, and how can they do that? Yes, please. So we are a nonprofit, and really a big way that we're able to keep our costs low and keep the program going is by donations. So both big and small, anything helps. And so anyone who has a good experience and comes through, we love when they circle back and give a donation so that way they can help the next person who's trying to access testing or people who hear about our

mission and they really want to help make genetic testing accessible. There's not a lot of genetic counselors in the country. Unfortunately, not enough. So we're trying really hard to train more. But for a lot of people around the country, it's not easy for them to find a genetic counselor, especially in underserved areas, in more rural areas of the country it may be hours away to to find a genetic counselor by supporting j screen it's just it gives us the ability to reach more people and be able to bring testing to as many people as we can they can continue to have healthy families that's awesome that's. This has been pretty insightful. I've learned a lot.

I'm just amazed at how much stuff you can do and everything. It's crazy all the stuff they can do in science. What a beautiful thing science is these days, especially now. And it just keeps getting better and better. Give us your plugs before we go out and social websites for people to find you on the interwebs. Yeah, absolutely. So again, our website where there's tons of educational materials and people can register is www.jscreen.org. So that's where you can register for a kit or donate or just look through. We have educational videos and a lot of

FAQs and then on social media at Get J Screened nice nice there we're on twitter we're on linkedin and we're on instagram and facebook i think i got them all there you go emily we certainly appreciate coming by today and spending time with us and telling us all how it works it's been awesome thank you so much for having me thank you thank you

and thanks for tuning in go to check these guys out and also youtube.com fortress chris voss hit the bell. And also, YouTube.com, 4ChessChrisVoss. Hit the bell notification button. Goodreads.com, 4ChessChrisVoss. And all of our groups on Facebook, LinkedIn, Twitter, and all that stuff. Thanks for tuning in. Be good to each other.

And we'll see you guys next time.