Subscribe
Share
Share
Embed
A podcast by millennials, for millennials, covering health challenges unique to Gen Y. Get expert insights, practical patient advice, and inspiring survivor stories to help you make informed healthcare choices. Empower your journey with YMyHealth!
00:02
Melissa Schenkman
Welcome to the YMyHealth Podcast, a healthcare podcast created by millennials for millennials. I'm Melissa Schenkman.
00:09
Julie Woon
And I'm Julie Woon. We're two members of Gen Y on a mission to tackle the health challenges unique to people in their 20s, 30s and 40s.
00:16
Melissa Schenkman
With inspiring survivor stories, plus insights and practical advice from experts across the country. We've got you covered.
00:22
Julie Woon
Whether you're navigating a chronic condition, cancer, or challenges to your mental health, or.
00:27
Melissa Schenkman
You'Re trying to manage our complicated healthcare system and your prevent or just want to make smarter healthcare choices, this is the podcast for you.
00:37
Julie Woon
Let's get started.
00:41
Melissa Schenkman
Hey everyone. Welcome back to the YMyHealth Podcast. It's your co host, Melissa Shankman here. And today we have a wonderful guest, Dena Goldberg. She is a board certified genetic counselor with clinical and research experience, including as the Gordon and Betty Moore Endowed Counselor of Hereditary Gastrointestinal Cancer Prevention at University of California, San Francisco, and most recently as the founder of Malibu Genetics llc, where she provides personalized genetic counseling for patients. So welcome, Dena.
01:13
Dena Goldberg
Thank you.
01:14
Melissa Schenkman
Wonderful to have you. Genetic screening is something that has become of increasing interest in the millennial population. A lot of people hear about it, they don't know enough about it for some, as we both know, we want to get the word out for sure about this incredible opportunity that we have with genetics screening. So I just kind of wanted to start and have you share with the community kind of what experiences you've had in your life that kind of led you to wanting to pursue a career in genetic counseling.
01:41
Dena Goldberg
Yeah, sure. So when I was six years old, my youngest sister was born and it was found shortly after birth that there was something different. My mom's a pediatrician, so she kind of knew there was something different. And she ended up finding out very quickly that she had a chromosome abnormality. And it wasn't, it was one of these that wasn't detected with technology back then ahead of time. So anyway, I kind of, my parents kind of sat me down and explained chromosomes when I was really young. And I've kind of been fascinated ever since in kind of what makes us tick and in my sister and a lot of her disabilities and medical issues. And so I've really been interested in genetics for a very long time.
02:22
Dena Goldberg
And originally I wanted to work with other families like mine where they had a sibling or a child with a disability that maybe needed a diagnosis because getting a diagnosis is so helpful for so many reasons. Then I ended up more in this kind of adult and preventative care area, where there's just a lot that we can do to lower the risk of disease.
02:43
Melissa Schenkman
Oh, absolutely. And that's really fascinating that the idea, the concepts came into your life at such a young age and that you pursued that and come with such a personal experience and seeing the impact of getting that diagnosis and being able to find out is huge. So really appreciate you sharing that with us. You have such a wealth of experience at this point in your career. Please share with us kind of some of the health conditions and the populations that you've worked with.
03:08
Dena Goldberg
Sure. So my first job out of grad school was working in the hereditary was the UCSF Cancer Genetics and Prevention Program. And then as you said in my introduction, then became endowed counselor of Hereditary GI Cancer Prevention. So I worked with a lot of inherited cancer syndromes like BRCA 1 and 2. And then I got really good at working with lynch syndrome and inherited polyposis, which is having lots of polyps, and then some different diseases of the pancreas like pancreatitis. And so that's really what I was doing for a while in the hospital system. And then when I left that role and was consulting as a genetic counselor for a telemedicine company, I did a few of these like proactive tests with people that are otherwise pretty healthy but want to learn what they're at risk for.
03:57
Dena Goldberg
And there's all these direct to consumer tests online where people want to just learn this information and they're not really medical tests. And so this was an service that I realized I could provide to people to really learn as much about themselves as they can to really alter their medical care plan in a way that's highly evidence based and that we know a lot about. And I think the other thing is what I saw is that there's so few people who have these syndromes actually know they have them because the systems we have in place to get screened and to learn more and to have your doctor refer you just don't always work out the way they're supposed to. And there's a lack of awareness for a lot of these conditions, even though they're really common.
04:37
Dena Goldberg
And so for me, doing something like a preventative screen is just so helpful in learning that information and increasing the amount of people who can get testing. So anyway, once I started working in my private practice, I then realized that there was a big population of people who had a lot of kind of unexplained medical issues. And so also working with some of them, particularly like Ehlers Danlos syndrome or some of what we call the connective tissue disorders. Well, for many reasons, they aren't able to get into care very quickly. And so I realized that there was an opportunity to really help this community with getting testing so that they can maybe get into care a little bit faster if they're positive or get that peace of mind that they're negative. So that's another community I've worked with.
05:23
Dena Goldberg
I've also done a lot in the Jewish community when it comes to just population screening, because those who have Ashkenazi ancestry are at an higher risk for many conditions, as well as even non Ashkenazi Jews have their own conditions. And then I've worked with my sister's community with the chromosome 18 conditions. And then I'm trying to think if I left anything out, those are the areas that I have the most interest in. Wow.
05:46
Melissa Schenkman
And that's a lot of different areas and a lot of populations that we hear about that again, to your point, people don't realize.
05:52
Dena Goldberg
Yeah.
05:53
Melissa Schenkman
That they have these things and are so important, and several of those really, in particular, our generation. Tremendously so. That's really good to hear and really appreciate your work. We actually, as people know, we had an episode specifically on Ehlers Danlos, and not for our first time. We've really kind of been talking about that, I would say, for the past two years or so. Such an important community to connect with.
06:13
Dena Goldberg
So, yeah. Yeah, there's a lot of them out there and they're very underserved.
06:16
Melissa Schenkman
Oh, a hundred percent. That is very true. And you clearly have a passion for education. And so I was wondering, because a lot of people, as we all know, who are very interested in the science side aren't always necessarily interested in the creative side as well, outside of that. So for you have an interest in both. And I was wondering if you could talk a little bit about how your passion for. And your talent in the creative arts and theater kind of has lended itself very well to your work.
06:47
Dena Goldberg
Yeah, I grew up thinking that I was going to be an actress or singer. And I'm just creative in a lot of different ways. And so when I was working in clinic full time, I kind of felt like I was a little bit off balance because it was so science. But, yeah, I wasn't doing as much creative work. And so I was doing a lot of it outside of work. And so when I had this opportunity to move down to Los Angeles with my husband for his job, I thought, okay, what if I can make something new? Like, what if I could Figure something out in a way that I could really help educate so many people by using my creative skills, but also my clinical and science background and expertise. I actually, this whole thing is just an experiment.
07:28
Dena Goldberg
Like, nobody's really done what I'm doing in my area, and so I'm kind of making it up as I go, to be honest.
07:33
Melissa Schenkman
Well, you know what? It's an experiment that's going very well. I will say no. I love the creativity and the thought that goes. You can tell so much thought goes behind your post. Dina has a very active Instagram page, which we'll link in the show notes. And anybody who can bring science to life in such a creative way, I'm such respect for. And I think, you know, keep doing what you're doing in that regard, for sure, because I think it really catches people's attention and teaches them. Yeah, teaches them really important things and kind of when we look. And I know you touch on some of these topics on your page, too, as a fellow millennial in the healthcare space.
08:07
Melissa Schenkman
And you're looking now, today, in 2025, what does the genetic screening landscape look like for people like us who are in their 20s and 30s and 40s across the country?
08:18
Dena Goldberg
Yeah, for our generation, I'd say. And where we are right now in life, there's two kind of areas that I think about. So one is family planning. So a lot of us are having babies. Right. A lot of us are of the age where we're making those decisions or going through ivf. And so there's all of the genetic testing that you can do before having a child. So that includes things like carrier screening that everybody should have, no matter what your ancestry used to be only offered to certain populations. But we know that's not good practice and everyone should be offered it.
08:48
Dena Goldberg
So there's carrier screening and that I prefer to have both members of a couple or both the person giving the egg and sperm to do that because it just doesn't make sense to wait because a lot of people will carry something, and then you have to wait to get the second result. So I like when people can do it at the same time. That's carrier screening. And then there's a lot of types of genetic testing that are offered to look at fetal DNA, to look at, like, the health of the fetus and the outcome might be for a pregnancy. And then there's also, like, fertility, like testing embryos for an abnormal amount of chromosomal material or a specific condition if somebody doesn't want to pass it down. And so those are all kind of on the reproductive side.
09:29
Dena Goldberg
And then we have prevention, slash risk reduction areas that's going to be looking at our health as an adult and what that could mean for us, like what things are we more likely to develop and what things are we less likely to develop and what does that mean for us? So does that mean we need earlier and more frequent screening than the next person or does it mean we should do the general population recommendations? And so by using tools like family history, personal history and genetic testing altogether, it gives us a better picture of what our medical care plan may look like and make sure that we don't have any really high risk things that we should be paying attention to. So there's that family planning, reproductive category and then the preventative slash risk reduction category. So that's kind of the landscape.
10:14
Dena Goldberg
There's lots of testing in the risk reduction category. There's cancer risk, cardiovascular disease, there is general, like sensitivity to medications, there's neurology and early onset dementia, there's so many renal disease, eye disease, all these different areas that we can use genetics to really understand our risk.
10:33
Melissa Schenkman
Which is wonderful to hear because I think we come so much from a generation where the mindset is to be proactive. Yeah, majority of us with our health. And this is a way to. Genetic counseling, genetic screening and testing is a way to be proactive. Yeah, that's very interesting to hear, but also it's very exciting to hear. Which brings me to the exciting part also always is. There are so many exciting parts in this, but one is which our technology is always evolving Right. In every area of life these days. And so I was curious, when it comes to genetic screening, kind of how often is that landscape changing as to what we have access to and how have you seen that kind of progress in the past year or two?
11:14
Dena Goldberg
Yeah, definitely changing quickly. There's definitely new tests that come out on the market and then the prices may vary because of lots of different reasons. Behind the scenes, the price has definitely gone down. There are cash pay rates for a lot of these medical grade tests. So that has improved for the most part that become more affordable. There are more genes added to these what we call genetic testing panels every year. So typically when we do a genetic test, we do it for a specific indication. So like if we know somebody's interested in learning about their cancer risk, then we'll look at all the genes associated, let's say with inherited cancer syndromes. And so the genes associated at that time is kind of the keyword there.
11:55
Dena Goldberg
So as we learn more over time, then more genes are added to those panels and someone would need to update their testing. So typically when we say, like, if somebody's had genetic testing for something and they didn't explain maybe something in their family or something they have, then checking back in every few years to get more testing is a good idea, I think. I'm not sure if that answers the exact question you had.
12:18
Melissa Schenkman
And then I was talking about how. Also curious how often things change as well.
12:23
Melissa Schenkman
Just.
12:23
Dena Goldberg
Yeah, a lot.
12:24
Dena Goldberg
And there are small changes that happen, but then over a period of a few years, there may be enough that it would warrant further testing or an updated panel. Yeah, certainly. Like someone who's tested more than five to ten years ago, we really like to get them back in for more testing if it was negative and they came in for a certain reason.
12:43
Melissa Schenkman
That's really interesting because I would bet that a lot of people just kind of, when you're scratching the surface on genetic testing would think, okay, I do it one time and that's it. So I think that'll be news to.
12:53
Melissa Schenkman
A lot of people.
12:54
Melissa Schenkman
So that's really important to highlight.
12:56
Dena Goldberg
Yeah. And I should clarify, too. So there's two other things whenever I talk kind of about this. So one is that the genes we're looking at are the ones you're born with, and so they don't change. And so from birth to death, you're going to have the same genetic code. When we're talking about the type of genetic testing that I'm mentioning. And so it's not the actual test that changes. It's the amount that is actually tested and analyzed. So that's what's different. So it's not like you have a mutation. It's not like you don't have one today, but you'll have one tomorrow. That's not how it works. It's just about, like, how deep we're digging, what our technology is currently capable of detecting and how that changes over time.
13:36
Dena Goldberg
The other thing is that, like, somebody could have come in for, let's say, for one indication, like, they came in for carrier screening before having a pregnancy. And a lot of times they think, oh, I had genetic testing, so I'm negative for a BRCA mutation or the breast cancer gene. And really that doesn't include that gene. It only includes recessive conditions that get passed down from parent to child that people are unaware they have. And so it's a different category of genes that we're looking at than the preventative stuff that I was talking about. So I think people get very confused because they think of the word genetic test as being one test.
14:09
Dena Goldberg
But there's so many types of ways to look at our genetic material, and there's a lot of different ways that your provider will say, you know, hey, look at this group of genes or this group, or look at these chromosomes, or look at the methylation here. So you have to really work with an expert that really understands what your goals and values of testing are, and then what that means, what the best test is, and what the most affordable test is based on that.
14:35
Melissa Schenkman
Absolutely. Working with a genetic counselor like yourself would be key to that process, no question about it. It's no secret that the number of cases of cancer in people under the age of 50 have been rising. We hear about it all the time in the media, is one of the very, I'd say, hot topics in our health care these days. And there have been scientific studies that have been documented as well. But most notably, there's a lot of talk about colorectal cancer and breast cancer, as you mentioned, also far as hereditary breast cancer. With that said, as someone who's done a lot of work in hereditary cancer syndromes, which we are so grateful for, how do you feel the role of all this kind of happening with this increase in documenting these cases of early onset?
15:18
Melissa Schenkman
How do you think it will affect genetic screening, the access to it, and maybe recommendations for it as well?
15:25
Dena Goldberg
Yeah. So a lot of those early cases, even though many of them are going to because of somebody's inherited risk, there's also many of them that are not. And we will look at a lot of these really young cases, and they just don't have anything detectable on a genetic test. And so what that tells me is that it's probably a mixture of some sort of environmental exposure, maybe a lot of different genes that individually add up, but it's not one gene that confers a really high risk. So for those people, I think really the best thing to do is earlier screening. And I think in our generation, they may need to move that screening age down even more because of the rise in early screening.
16:02
Dena Goldberg
I think also more awareness about what to look for and to make sure you're going in and awareness about how to even navigate that. Right. Because so many millennials and Gen Z don't have primary care doctors. So what do you do when you have, like, maybe a slight bleeding in your toilet? Right. It's like, what do you even do at that point? Who do you talk to if you don't have a doctor. So I think it's like more education and awareness around that, more resources available, lowering the screening age. But then also the genetic screening, which, for instance, lynch syndrome, which is the most common inherited form of colorectal cancer. It's actually quite common, more common than we once thought, but only a small percentage of people that have it actually know they have it.
16:42
Dena Goldberg
And I think part of that is because like I said earlier, the systems that we have in place aren't fully working and getting everybody that fits criteria in to get tested. So as we move to worlds where everyone is offered genetic testing, I'm hoping that this happens sooner rather than later. But I think once everyone's offered it, instead of following these guidelines and really like excluding some people because like insurance companies don't think that they're going to be positive, I think once we start doing more of this population based testing, we're going to find more of these cases. We're going to be able to then understand it better, we're going to be able to provide more care for these individuals.
17:17
Dena Goldberg
So I think all those things together is going to be kind of the necessary reaction to this lower and lower age of cancer diagnosis.
17:25
Melissa Schenkman
That's extremely interesting and also extremely helpful to hear and speaking to the fact. Let's say we did, every one of us had access to genetic screening. There was no insurance, which we all talk about all the time. There was no insurance issue. There were all these things we had access to for fellow millennials, how could they go about and how can they now as well? But let's say there was no access issue and you could sign up easily. How can millennials use genetic screening to pinpoint their individual risk?
17:53
Dena Goldberg
Yeah, okay, so it would be a combination of understanding family history. So sometimes there's a lot of risks. Like if we see a lot of a condition in a family history, but someone's negative on a genetic test, like they still technically would have this increased risk based on just not knowing what's causing their family history of a disease. So you do need to, if you have information on family history, use that and then also personal history. So there's different personal risk factors for different conditions. But then the genetic screening is really looking at these single gene conditions where if somebody has a specific genetic change, we know that it is associated with a really high risk for very specific conditions.
18:32
Dena Goldberg
And that can be like in the cancer space, it can be in the cardio space, it can be in all the spaces I mentioned earlier. And so it's so hard to like explain all of them. Because there's so many different things to test for, so many conditions that we know a lot about that we call them clinically actionable. So we have actions that they can take in their medical care plan. So what could that look like? That could be, you know, somebody who's at an increased risk for breast cancer may go in earlier and do breast MRIs as opposed to just mammograms. At 40, they may do earlier mammograms. They'll alternate every six months. Or in some cases, when the risk is high enough, they may choose to have a preventative mastectomy. So that's just an example.
19:11
Dena Goldberg
People with lynch syndrome, you know, they can have earlier, more frequent colonoscopies. They can do something like aspirin therapy, which lowers their risk. There's other types of therapies for lynch as well. And then for somebody, let's say, who has some sort of cardiovascular issue that they were unaware of, there are things like implantable defibrillators or certain medications that might appropriate for somebody to prevent them from having a cardiac event. Yeah. So those are just like some examples of what different screening and medical interventions could look like based on someone's genes. Right. Them having a genetic change that has that high risk. Yeah. So it really is disease dependent. But there are absolutely interventions to take in a lot of these situations.
19:56
Dena Goldberg
And even if somebody's negative on a genetic test, but they have a strong family history, we will have different recommendations for them based on how high their perceived risk is for a condition.
20:06
Melissa Schenkman
And that's incredibly helpful to hear and empowering. Honestly, it makes genetic testing such an empowering tool for us to be able to use. Because then unless you know, yeah, there's nothing. You can't take the appropriate actions to lower your risk. And so it really provides such incredibly helpful information. And to talk with you. And let's talk about the process. Right. First, kind of what is say. Because people see all these different terms, it's always good for us to define. Right. So what is genetic counseling versus genetic screening?
20:37
Dena Goldberg
Sure. So genetic counseling is the conversation that you have before and after, or sometimes just after you have a genetic test. So it's talking about. It's kind of like establishing what the goals of the patient are for testing and then looking at all those other data points I was talking about earlier and then figuring out what the best test for them would be based on that. Then when the results come in, it's going over results in the context of their personal and family history. So what that means for their medical care plan. And then also kind of navigating some of the feelings, the anxieties about making that decision to test or about getting a positive or negative result, because it can cause lots of different emotions both ways.
21:18
Dena Goldberg
And then also we help people understand how to communicate this information with family members and who else in the family's at risk. And so the genetic counseling is really the discovery discussion around the test, but not the test itself. So there are sometimes people that come in and what they want is something that we know genetic testing actually can't help with, or let's say their relative who had a cancer tested negative on a big panel, then we don't really have anything to test them for. If there's no other history in the family, then at that point we would just more talk about their risk based on history than genetic testing. So it's like all of the, everything surrounding that.
21:58
Dena Goldberg
So then the test itself is literally just collecting blood or saliva or cheek cells or whatever type of tissue we use in that particular genetic test and sending it to the laboratory. And then the laboratory extracts DNA from those cells, looks at the genes that whatever the provider ordered, like if it's a different type of test on our DNA, then the laboratory gives us the results and then we translate it for the patient. So the test is literally just that process of taking the tissue, extracting DNA and looking at the results and then reporting back. And so you can absolutely do one without the other. So genetic counseling, again, the conversation surrounding the test. And then sometimes people will have the test just with their provider and they won't have genetic counseling with it.
22:43
Dena Goldberg
But I always recommend, if you're going to do genetic testing, to work with a genetic counselor so that you can really put everything together.
22:51
Melissa Schenkman
Yeah, absolutely. That would make complete sense because there's so many genes and there's so many different tests. And even if you were a person, I was thinking about this recently, like, even if you were a person who had a background in some area of science and went to school in some area of science, you still couldn't figure out how to analyze these tests. You need an expert like yourself to be able to do that and make sense and make the best use of them, honestly as well. So I can understand why you would make that recommendation to pair both your genetic counseling and your genetic testing. And I know you were mentioning testing can involve blood or a cheek swab, but I was depending on the test.
23:28
Melissa Schenkman
But I was wondering, do you usually, just for our time conscious millennials, do you usually have to test at multiple sites. And how long do you usually have to wait for results? Just on average?
23:40
Dena Goldberg
Yeah, great question. So, depends on the test. But most tests that we order are going to be a simple blood or saliva test. And they're both the same. We're looking at the same cells. So the white blood cells that exist both in saliva, our and in the cheek cells that contains very fresh DNA because it's straight from our bone marrow. And so it's a really good representation of what our original genetic code looks like. And so we're going to be looking at the same cells either way. It's just the method of extracting is just going to depends on the provider in the lab. But they both have success. You know, some people have dry mouths, so they may choose blood. And some people don't want to get a poke or pay a lobotomy fee. And so it's very easy to do saliva.
24:25
Dena Goldberg
I do, like 99% of my patients, we do saliva or cheek swab because you can send the kit to their home and then they collect it and they send it in. The only thing is, if they eat, kiss, drink, chew gum, smoke or any of that within 30 minutes of spitting, sometimes it can contaminate the sample and then it's harder to extract the DNA and it fails and they have to send another sample in, but that's less common.
24:47
Melissa Schenkman
Good to know that.
24:48
Dena Goldberg
Yeah. And it doesn't mean anything. Like, sometimes people read into that, like, oh, what does that mean? And it's like, it doesn't mean anything. It just means that they just couldn't extract DNA and you get a new sample and then it's fine. But anyway, so you only have to do that once for the test. So you're not needing it from multiple sites on your body and you're not needing it multiple times. It's just once, as long as the sample works and isn't contaminated. So that's the exception is it may have to be twice if the first sample fails, but that's again, less common.
25:14
Melissa Schenkman
That's really good to hear. And how long on average would you say it takes for people to get results?
25:19
Dena Goldberg
Oh, yeah, Great question. Again, depends on the test. So I usually quote about two to three weeks for a general panel of genes, like a cancer panel or proactive panel that I order in my clinic. And sometimes it'll be really quick and sometimes it'll be just like a little bit past that time. But I think it's a pretty safe estimate if you're doing Something like whole exome or whole genome sequencing. That's gonna be a longer amount of time because it takes longer to analyze and process all that data and. Yeah, so in carrier screening, I think is about. It depends on the lab. So it's a few weeks as well. Yeah, so it just depends on the tests and the technology used in the laboratory and what their quoted turnaround time is.
25:57
Dena Goldberg
Makes sense. But in the weeks type of ballpark, usually not the months or.
26:01
Dena Goldberg
Yeah, unless it's like a big research, whole genome sequencing type of thing, then that can be months. But typically for most tests it's only a few weeks.
26:09
Melissa Schenkman
Great. No, that's very helpful to hear. And once you have your results, kind of, what's your approach? You know, how do you work with patients to help them in taking the best next steps based on the results? And do you also work with other healthcare providers? And it sounds like you do that surround that patient.
26:26
Dena Goldberg
Oh, absolutely. So you can think of genetic counselors as a member of the healthcare team. So when I worked at, for example, ucsf, I worked alongside a lot of different doctors and I was in the specialty of oncology, but also was working in the GI practice. So it depends on the hospital where genetic counselors situated. But we often are embedded in these healthcare teams and in that specialty. And yeah, so we're really the person that your doctor can call or refer to if they have questions, even on genetic testing.
26:58
Dena Goldberg
And so just like any other specialist, we come up with a note, like a progress note that both before and after a patient test, typically, and then we interpret that result in the context of that patient and that visit and then write it all down for the physician and the other healthcare team members to see so that they have documentation of what that means. It's situation dependent. But sometimes I'll have a conversation with someone's primary care physician or someone's breast surgeon or whatever. There's lots of different reasons why I may talk one one with someone else. It's easier when all your care is in one health system and the genetic counselor is in that health system, then it's very easy. There's usually continuity of care for me in my private practice because I kind of operate more as a concierge practice.
27:42
Dena Goldberg
I do have that flexibility to be able to communicate with whoever the patient wants me to talk to. So we are mainly part of any medical care team.
27:52
Melissa Schenkman
That's wonderful to hear. And then how do you work directly? You know, you're working with, in parallel, obviously with our healthcare team, which is wonderful. To hear, because coordination of care and continuity care are things that are sometimes very hard to find. So we are very happy to hear that, as we all know, but with the patient directly yourself, and obviously every situation is different. When somebody were to receive the results back, how would you work with them to kind of make decisions on taking those next best steps?
28:17
Dena Goldberg
Yeah, so what I typically do and what most genetic counselors do is we go over what that means for them. So we looking at their family history or the history we have and then looking at the gene and the variant in the gene that came back and looking at the interpretation of that variant, we go through all of this and saying, okay, this is what this means for you. Here's what you're at an increased risk for. Here are the consensus guidelines and recommendations for your care going forward. And the patient can decide to do that or not, but we're not going to push them either way. But we are going to let them know what that means and then refer them to the appropriate specialists for that type of intervention.
28:59
Dena Goldberg
So it's really providing the knowledge and answering questions and addressing any emotions that come up with this information. Again, everything is up to the patient. It's their choice as to what they want to do with that information. But our job is to give them the information so that they can make the best choice for them.
29:17
Melissa Schenkman
Absolutely. Which is wonderful. And I know family history you mentioned a little bit earlier. I know family history. And sharing family history is of great importance to you. And so as it is to us at why My Health. This has come up many times, especially in the colorectal cancer space. Very much. And so let's say a fellow millennial finds out that they are at risk of a certain type of hereditary cancer, another condition, and they would like to go to other members of their family and have them get screened and get genetic screening. One thing I think a lot of people want to know, is there any age that there is a cutoff at which genetic screening will not be helpful? Helpful with that family member and learning that direct scientific history from them?
29:59
Melissa Schenkman
An age? Do you mean like an above, like a below a certain age?
30:03
Dena Goldberg
Above a certain age? Like, is there a certain age that you're, say, too old to get? Because I'm thinking about the family member, relatives, even our first degree relatives who are older than us and are like, I'm curious. And I think a lot of other people are quaint in life. We're like, yeah, getting that information from them, it would have been great, like 20 years ago. But we're not gonna be able to get what we need now. So they don't need to go in for the.
30:24
Dena Goldberg
That's a really good question. It's very situation. I would argue that it's really never too late to do testing, but there are ages when it's like, okay, like if someone's 99 or they're a hundred years old, I don't think that testing is really going to be for their own care and prevention, especially since they've lived out a lot of the risk if they haven't developed the condition. But that information is very important for relatives. So if we know that, let's say somebody's grandmother did have a mutation, then now all of a sudden her children are going to qualify for this testing and we're going to know that they're at risk. If the grandmother tests negative, then we know it's not from her. And so we may be able to change who really needs testing based on that information.
31:07
Dena Goldberg
And like, maybe she has a sibling and that sibling's children need testing. And like, if she's negative, then we don't need to go after that part of the family or tell them about it. So I would say when you get to be an older age, it's more about testing for family purposes, for the understanding risk and how something's running through a family. So there's no magic age when they are no longer necessary. Of course it depends on someone's health. So like, let's say they're older, in their 70s or 80s, and they're in really good health, then that might be helpful for them because if it seems like they're going to be living a much, many more years, then the information may be helpful. So it just depends on the situation, on the gene and on the family history.
31:52
Dena Goldberg
But I've never been asked that question. That's a really good question.
31:54
Melissa Schenkman
Thank you. And your answer is fascinating to hear because I think a lot of us with so many things in healthcare, it's like, okay, if you don't do this by a certain age or that. And since genetic screening involves it's individual, but ultimately involves family as well, and can involve family, and there are a lot of people who are going to be older in that family. It's very interesting to think about this and people who we've talked to have been interested in that. But yeah, that was great. Very much appreciated. And for you, what are you most hopeful about when it comes to the future of genetic counseling and screening for millennials?
32:28
Dena Goldberg
Yeah, I love that. We are a generation that's very proactive about our risk and that we tend to be pretty healthy and make decisions based on wanting to live a healthier lifestyle. And so I think that we are going to be a generation that utilizes genetic technology way more than our parents did because one, they didn't have the technology. But two, we have this motivation that maybe wasn't as existent as a whole generation right before. So I just look forward to increasing access. So anything that increases access to appropriate and expert guided and evidence based genetic testing is wonderful. Like that's what I'm hoping for.
33:10
Dena Goldberg
I really like population screening where we are able to test anybody that walks into a doctor's office, regardless of family history, because there's so many reasons that people don't really know their family history, whether they're adopted, their donor conceived, or their family didn't talk about health history or they didn't get good medical care. There's so many reasons. And so today, with this guidelines based model where you have to fit criteria for your insurance to COVID testing, a lot of people who do have mutations are not going to fit that criteria for many reasons. And so this population testing where everyone can get tested, I think is really where the future is going. And I'm very for it. I'm very for that.
33:48
Dena Goldberg
But also putting in that I think it's important to have access to an expert, like a genetic counselor who can really help you understand your results when you do get them.
33:56
Melissa Schenkman
Absolutely. And that's very exciting to hear about all the things that are on the horizon that you're hopeful about in this space and it empowers us.
34:05
Dena Goldberg
Yeah, I also, I'm excited now that there's more of a movement towards women's health in general and even in like in the fertility space and in the menopause space and women in general. Right. Who have previously not been studied as much. I think there's this big movement right now in our society to study women more and some of the conditions that affect us. And that will mean learning about the genetic causes of some of these conditions, which then will I think help a lot of people.
34:33
Dena Goldberg
So whether that's like an adverse pregnancy outcome or a, you know, understanding that somebody's going to go into menopause earlier than normal and what that means or figuring out that somebody's at higher risk for endometriosis, pcos or autoimmune disease, like all of those things that we just don't know a lot about, I think we will learn and hopefully the next decade yeah, absolutely.
34:55
Melissa Schenkman
And I'm very excited about the move in women's health as well. And I think we're going to learn a great deal from that, all of us, for sure. And as we wrap up our episode, what are your top three things that you would like Millennials to know about genetic counseling and screening?
35:12
Dena Goldberg
Okay. One is that it's very accessible. So there are genetic counselors at every major health institution and also in private practice, in telemedicine practice. So there's a service called genomedical that I used to work for. And you can literally get a genetic counselor, like within a few days, I think. And then also I have a private practice where I see people that I can get in very quickly. And so it's very easy to access a genetic counselor. There's a website called findagenetic counselor.com if you want to find one near you. So there's a lot of opportunity there. And I think that there's this lack of awareness of who we are, what we do, how to find us. And I love Millennials to know that.
35:52
Dena Goldberg
Two is that if you want to be proactive, there are absolutely ways to do use genetics within that, but it is just one tool in the tool belt. So there's lots of different ways to learn about our bodies and the way they function. And one of those very strong tools is genetics. But obviously, like I was saying, it should be done with an expert and not ordered online because there's a sale. Right? Like these online tests are not medical tests. That should probably be my third one online genetic testing. If there's no genetic counselor involved. And it's just like that, you're being advertised sequencing, whatever, and it's not the same thing at all. It doesn't go through the same privacy laws. It doesn't have the same validity or analysis. You don't have an expert that's looking through your code and interpreting what that means.
36:37
Dena Goldberg
And so it kind of ends up being kind of junk. And it's very easy to open a genetic testing company these days. There's no regulation outside of like the medical labs. There's regulation there, but if it's like one of these, like direct to consumer companies, then there's a lot less regulation. And so you can literally claim things that are untrue. And there's just so many fly by night companies. So my biggest thing is don't just purchase a random test online because it was advertised to you. Make sure that some healthcare provider you trust is the one that's recommending it specifically. Somebody who works with genetics a lot. And usually it's better to do one that's ordered by a provider and not one that you order on your own at home. But that's changing. So the accessibility of testing is changing.
37:21
Dena Goldberg
But for now a good rule of thumb is to go through a genetic counselor. We can talk you through that.
37:28
Melissa Schenkman
Absolutely. No, it's great pieces of advice. And if people want to work with you and Malibu Genetics, how can they connect with you?
37:36
Dena Goldberg
Sure. So I have a telemedicine, so I do it with Google Meet and you can go to Malibu genetics.com become a patient. And I am licensed in the state of California and Illinois and then there are several other states like Texas, New York and a whole bunch of others that don't have license. So I can see patients there. So yeah. So if you're interested in working with me, then I offer a 15 minute free consultation where you can kind of just tell me what you're interested in and then I can let you know if I'm a good person for you to see or if there's colleague that might better for whatever it is that you're interested in. And the other thing I wanted to say, so I don't take insurance, but I can provide a super bill.
38:13
Dena Goldberg
But most genetic counselors at academic centers will take insurance. So that's another thing that people think genetic testing and genetic counseling, oh, I'm gonna have to pay. But most of the time it's covered by insurance if you fit your insurance criteria and if you don't, then you can come to me because I have very affordable out of pocket rates and I don't deal with insurance. I was done with that a while ago.
38:33
Melissa Schenkman
I bet. Yeah, I can understand. I know it's one big barrier to access, so that's very exciting to hear.
38:40
Melissa Schenkman
And to let people know.
38:41
Melissa Schenkman
So definitely check out Malibu Genetics. I will put that in the show notes for sure. Thank you so much, Dena for spending time with us.
38:48
Dena Goldberg
Absolutely. Those are some great questions.
38:51
Melissa Schenkman
Thank you so much and wonderful to have you share your expertise with us.
38:56
Dena Goldberg
Awesome. Thank you.
38:57
Julie Woon
Thanks for tuning in to the YMyHealth podcast. We hope you're leaving inspired and informed.
39:02
Melissa Schenkman
Be sure to follow us on your favorite podcast platform so you never miss an episode and shareYMyHealth with your friends.
39:08
Julie Woon
Have a strong to share or question for us. Connect with us @ymyhealth on social media or visit our website at ymyhealth.com until next time.
39:17
Melissa Schenkman
Remember, your health journey starts with the right information.
39:23
Melissa Schenkman
Stay healthy.