 Well, welcome to Know Your Family History, Improve Your Health. My name is Michelle Snyder, and today I'm going to be presenting with Sarah Von Schuch and Jeanine Lewis, and we're both, we're all genetic counselors from the Genetic and Rare Disease Information Center, and that's funded by the National Center for Advancing Translational Sciences Office of Rare Disease Research, and also the National Human Genome Research Institute, both of which are at the National Institutes of Health. So today our presentation is going to be very interactive. So if you have any questions along the way, feel free to raise your hand. And we're also going to be using the clickers that you are given to answer questions throughout, and we'll see the responses on the screen, how many of you picked each response. So we're going to get started today with a pretty easy question. Have you ever created a family tree? So use your clicker and press one for yes, or two for no. I'll give you a few minutes. Okay. Did everyone get a chance to respond? Give me a few more. Okay, let's, everybody in here, let's see what our responses were. Well, look at that, 80%, yes, that's really great. So today we're going to be talking about how you can use your family history to help improve your health. We have another question here. How many chromosomes do we have? We're going to do a little basics of genetics first. So press one for 23, two for 46, three for 48, or four for 92, and as you go along, if you want to change your answer, just press the other answer, and it will override what you pressed before. Almost all in. Let's see what we got. 61% chose two. Now the correct answer is two, you're right, it's 46 chromosomes, good job. So humans have 46 chromosomes, our DNA is packaged into chromosomes. Here on the left you can see what the chromosomes look like when you look at a, under a microscope. And if we on the right then sort of order them all up and pair them up, we'll see from biggest to smallest, we have 23 pairs, and one from each pair comes from our mother and one from our father. Really a chromosome is just one long string of DNA, it's tightly packed together, so if we unwind that string of DNA we'll see that a gene is just a segment of DNA and the genes provide our instructions for our traits, we have 20,000 genes in our genome. Here's another question for you, true or false? There are two versions for each gene. Let's see what we got. 50-50! This is a bit of a tricky question, the correct answer is actually false. We do have two copies in our cells of each gene, but there are more than two possible versions of a gene, and I like to think of it like flavors of a gene, somebody might have chocolate and vanilla, another person might have vanilla and strawberry, so each person only has two copies of a gene, but there are lots of copies, potential copies available. And so some of our traits are determined entirely by genetics, things like our blood type, and things that are genetic traits might be determined by one or more genes, and then there are other traits that are a combination of our genes, our environment, and our lifestyle too. So for example that would be height, so we know many genes play a role in height, but also things like your diet can really make a big difference in how tall you'll end up growing. Another question here, is it possible for two blue-eyed parents to have a child with brown eyes? Press one for yes, or two for no? You guys are quick on this one. Okay, I think we're all in. Let's see what the answers are. Okay, most people chose yes. The correct answer is yes, you're right. It is possible, because eye color is not a simple genetic trait, it's actually determined by multiple genes, so it's possible for two blue-eyed parents to have a child with brown eyes. So we know that we inherit physical traits from our parents and determine what we look like, but we also inherit traits that help determine our risk for medical conditions. So we know that as families we share a lot in common, we share our genes, we share the environment that we live in, and we also share our lifestyle. So by noticing the patterns of disorders among families, our healthcare professionals can help determine our risk and also help us take steps to reduce our risk. Now just because you have someone in your family with a condition doesn't necessarily mean you'll develop it, and the opposite actually is true. If you don't have a family history of condition, you still might be at risk. So now we're going to actually do an interactive activity, so I need my volunteers to come up front and stand here and align. So this activity is going to help us understand risk for common diseases, like type 2 diabetes. Now is this mic working? Can you still hear me? Okay. Okay, so what we're going to represent here is a continuum based on your genetic risk. So people here on the far left, they have a high risk for type 2 diabetes because they have two or more close relatives who have diabetes. In the middle here, slide down a little bit there in the middle. You guys are going to, are we missing anyone? We have enough for everybody? We need one more person? Where is, was there one more, can we have one more volunteer from over here? I think we're missing somebody. Pretty volunteered and then didn't come up. Okay, so and then in the medium risk, we have people who have one close relative and then here on the far end, we have people who are at low risk because they don't have any family history of type 2 diabetes. So now we're going to see how your lifestyle that you choose influences either raises or lowers your risk. So everyone's going to choose a lifestyle from one of these cards. You can either have a positive lifestyle, a neutral lifestyle, or a negative lifestyle. Okay, so Rosanne, you're first. What is your, what did you choose? Positive lifestyle. So that's very good. So this is going to actually reduce her risk. She has a healthy diet and she's very active. So you're going to actually move down two spaces and stand right in between these two right here. So if you, she, her risk is lower. She's moving down the continuum. Okay, now it's your turn. What did you pick? Negative. Negative lifestyle. She's, she does a lot of smoking and sitting on the couch. So your risk is actually increasing. So you're sort of moving in this direction. So she's already at high risk and now her risk is even higher. Okay. Neutral. Neutral lifestyle, she has a balanced diet. She has moderate activity. So she's actually not going to change your risk. You're going to stay right where you are. Okay. You already picked. Negative lifestyle. You have to have better habits. So you're going to move two spaces down. Now her risk, she's jumped over those two. Okay. Positive lifestyle. Okay. Let's slide down here two spaces. Next. Negative lifestyle. Okay. So now you're going to also move two spaces here. Neutral lifestyle. So you stay where you are. So again, you have that balanced diet and you, and you have moderate activity. So are you dead? Are yours already? This is why we have the cards. Remember who picked. Positive lifestyle. Very good. Good. You made good choices. No, this way, this way. You're lowering your risk. Yep. Right there. Negative lifestyle. Negative lifestyle. Okay. Nope. This way. Two spaces here. Yep. Okay. Neutral. Neutral. So you stay where you are. So you're at a low risk and you're still here at the low risk category. Neutral. Another neutral. One more. Positive. Positive lifestyle. So you're already in the low risk category. Look, you kind of moved all the way down there. Okay. So let's reform here. We're going to say you four are now in the low risk category. So slide this way just so you guys can see. And then you four here are in the medium risk category now. So sort of punch together. And then you four now are at the high risk category. Okay. So now we've seen a little bit how our lifestyle influences our risk. Now we're actually going to determine who ends up developing type two diabetes. So in this risk, you three are going to either sit or kneel down. Okay. Can you do that for me? Thank you. Now you two here, you're going to either sit or kneel down on the floor. And you are going to sit down on the floor. Okay. So for those of you who are standing, unfortunately I bet some bad news. You developed type two diabetes. And you can see that most of the people who developed type two diabetes were in the high risk category. But that there were some people from all risk categories. Even in the low risk, there was one person who developed it. And so who was, who was sitting and who had a negative lifestyle? Did anyone pick a negative lifestyle? For those of you who are sitting? No. No. But if you had, there are some instances where someone might have a very negative lifestyle, but they still don't end up developing type two diabetes. And then for those who are standing, did anyone have a positive lifestyle? There was and she did. So she, you know, she made good choices, but it's still, it wasn't enough to prevent her from developing type two diabetes. So we just have a few things here. Just so that you know here, this just sort of demonstration show, it's okay. Your family history can be used to determine your risk for complex common diseases like diabetes. And your lifestyle can help make choices to either raise or lower your risk. So not everyone at high risk developed the condition. There was one person who didn't. And I like to say low risk doesn't equal no risk. So you still do have a chance. It's just less of a chance than if you were in the higher risk categories. So thank you for all my volunteers. I really appreciate it. Oh, yes, take off your cards. I'm Sarah. So what, what might we expect to find when we do our family health history? Some of you may already know because many of you have already done one, but it wouldn't be a surprise if when you do your family health history, you find conditions such as these, these are common disorders, things like heart disease, asthma, diabetes, cancer, kidney disease, autoimmune conditions. We also call these conditions complex and just like our risk continuum activity demonstrated, we, we know that there are many factors that, that come to play in causing these conditions. So we know enough to know a little bit about risk. We know that for stroke that diet exercise and behaviors like, like smoking are risk factors as well as our genetic information. But when it comes to, to really just explaining or understanding exactly how our genes are contributing to risk, it's a very difficult problem to solve. And there's a lot of bright people that do clever studies to sort this out. And if you follow the biomedical literature or even pay attention to the news, you have, you often hear little bits about knowledge that we glean about exactly how our genetic information is contributing to these diseases. But when we're talking about, about family health history, what we hope to gain from doing it is to get a general sense of risk, low, medium, or high for, when we find a common complex disorder in our family. And one way we can do that is one thing we've done in, in our studies and observations is we recognize that there are some families that are at a particularly increased risk based upon their, their genetic information. And so we can study those families. We can observe certain characteristics and use our knowledge of those families to help identify other families that may be at a similarly increased risk. So not thinking of you and I specifically, but collectively, what might we find if we do our family health history? So there's been a few studies that looked into this and I want you guys to give me your best guess. So grab your clickers. How many people who complete a family health history have a moderately increased risk for a common condition? Is it 1, 50%, 2, 25%, 3, 5 to 15%, or 4 less than 5%? All right, let's see. So most people guessed 50%. In fact, so estimates suggest that as high as 3 in 20 people who complete a family health history are identified as being at a moderate increased risk. So 3 is the correct answer. All right, similar question, best guess. How many people who complete a family health history are found to be at a high risk for a common condition? Is it 1, 25%, 2, 15%, 3, 1 to 5%, or 4 less than 1%? You guys are much quicker this time. Oh, we're all over the place here. So again, based on studies, it's estimated that about 1 in 20 people or around 1 to 5% who complete a family health history are identified as being at a high risk for a common condition. And by moderate risk we're talking about a 2 to 5 fold increased risk. High risk we're talking about up to 50 fold increased risk for a condition. So by doing nothing more than taking the time to collect information on your family, a substantial amount of people are going to identify information about their family health history that they can now discuss with their doctors, that they can do research, explore more about what that might mean for them and their health. Okay, so we do a family health history. Unless we're lucky, we're probably going to find conditions like we saw on the slide, some common complex disorders. But what about genetic conditions? And of course there's the argument that all conditions are genetic, but I'm talking about single gene disorders, things like cystic fibrosis or Huntington's disease. So family health history for ages has been used by health professionals and by genetic professionals to assess specific risk-defined risks for families that have a history of genetic conditions. Maybe we can refer to these as single gene disorders. So unlike complex conditions, single gene conditions, we may know the gene. These single gene disorders often run in families in one of several specific patterns. So we can use our information of the genes, of our understanding of the cause, and our understanding of the patterns to make specific, more defined risk estimates for family members. But of course, and you probably are all thinking this, single gene disorders are rare. So maybe, you know, if we do a family health history, you know, many of us are not, possibly not going to find a single gene disorder in their family, but this isn't always the case and some good examples. There's two million Americans, mostly African Americans that are carriers of a mutation in a beta-globin gene. We call them to be sickle cell trait, have sickle cell trait. And you may ask why is that so common and why are so many people that are carriers of African ancestry, and perhaps you've heard that the reason is having the trait actually confer some protection against death by malaria disease. And we also know that Africa has been hard hit by malarial disease. So you can imagine, if you are born with this trait and you are exposed to malaria and you become sick, if you have the trait, you're more likely to survive, so you're more likely to grow up, you're more likely to have your own children, you might have a one or two chance of inheriting that trait and we can see that pattern again and again and over a population and over amount of time, then you start that this trait becomes more prevalent. Of course, in the United States, you're not going to find out you're a sickle cell, you have sickle cell trait because you survived malaria, but probably because perhaps you're tested or you have a family history of sickle cell disease. We know that one gene change in this beta-globin gene can improve survival and is actually an advantage, but having two changes can cause a condition called sickle cell disease where the sickled cells or the crescent shaped cells can become trapped in blood vessels that go to your limbs and organs and can actually cause significant pain and damage to the body. So this, when we're thinking about family health history, sickle cell trait is a good reminder that when we're collecting our history to think also about our ancestry, about our ethnicity because sharing that information with your doctor, we know that can may lead to discussions about additional testing that you may be available to you because we know that some single gene disorders are more common in people of certain ethnicities and races. Okay, so you guys may recognize this face. This is one of my favorite stay-at-home moms. This is Claire Dunfee from the popular television show Modern Family, and we're going to talk a little bit about how you go about collecting your family health history. We're going to do a very simple family history using Claire. We won't go into... I hope to just glean some highlights and some things to think about as you're collecting your family health history, but I want to point out that there are some wonderful resources that will go in great depth. In fact, we have some pamphlets here today on our table that discusses in depth some of the thoughts and things that might come up as you think about approaching your relatives about talking about their health history. If you have relatives that aren't here today and you want to introduce them to the concept of family health history, these are great tools for doing that too. You'll also know as we go along that I'm going to put Claire's family health history in a classical format called a pedigree. We're not going to get hung up on how we do these to use circles and squares and lines and dashes because, again, there's a great resource online that can do it all for you. My family health portrait is a website by the U.S. Surgeon General. You plug your family health history information in. You can choose to have that sent to a pedigree and able to display it for you. You can print that and share that with your family and physician. And then a slightly different resource. This is just a highlight. There's a number of great resources out there where this is family health wear, and this was developed by the Centers for Disease Control and Prevention. What it does is it'll collect your family health history information. You answer a few little questions, and it's going to generate your risk for six common complex disorders, low, medium, high, and give you some concrete suggestions about how you might address that risk. Okay, so back to Claire. Who should Claire be thinking about? Well, she should be thinking about her first-degree relatives, her children, parents, siblings, and less Claire has a clone or identical twin. These are going to be the most genetically similar people on the planet to her. They share half of their genetic information with her. She's going to also want to be thinking about her second-degree relatives, her grandparents, aunts and uncles, any half siblings. So Claire has a half-brother Joe, nieces and nephews. So if you watch the show, you know she has a niece, Lily. And this brings up a good point. So we know that Lily is adopted, and a lot of us find ourselves in a position where we may not know our biologic relatives' health history. Maybe we also are adopted. And true, you can sometimes talk to your parents and learn a little bit, or you can contact your adoption agency and learn a little bit. But what you can also do is you can use a family health history to collect information about some of those other factors that we know affect risk. So we know that in families, things like diet and behaviors and environment, these are all factors that can affect risk, and these are things that she could document in her family as well. I'm just going to mention cousins. Sometimes people, sometimes it's recommended to include cousins as well. Cousins are actually third-degree relatives, so they share one eighth of their genetic information with you. But you can get a full, like three-generation image or picture when you include cousins, so that can sometimes be helpful as well. Well, for the same reason about shared environment, and I want to throw all of our other favorite characters in here. So now what? What are some things that Claire needs to be thinking about when she's collecting her family health history? So she's going to want to be thinking about and asking about common, you know, complex disorders that may be in her family, like the ones we saw in the slide earlier. She's going to be watching for anyone in her family that may have been diagnosed at an early age. So for cancers, a lot of times that's younger than 50. She's going to look for unusual presentations. So a relative that's had multiple cancers or maybe bilateral, like for example, bilateral breast cancers or unusual presentations like a male relative with breast cancer. She's going to be thinking, she's going to want to document any cases of early death in her family. And also when we're thinking about common, complex disorders and you recognize their relatives in your family with these conditions, think about is there any other risk factors that that person has that might account for that disease. So if you're finding a relative that has high cholesterol, but yet they exercise and they eat healthy, that's something to be watching for as well. It's easy to forget about pregnancy difficulties, but you would want to know if has anyone had trouble becoming pregnant or staying pregnant, any conditions diagnosed in newborns and infants or children, and consanguinity, which is just a big word. It's a reminder to ask your mom and dad, ask your grandma and grandpa if they were in any way related. Were they first cousins, second cousins? When we think about consanguinity, we're not so much thinking about risk for complex disorders, but we're thinking about risk to future offspring. The thought is that we all carry some recessive gene mutations, but we don't always know it. But if you had a child with someone that carried the same recessive gene mutation, then your child, your children would be at risk for developing that rare single gene disorder. And so as you can imagine, if you share a relative, then it's more likely that you might share some of these recessive gene mutations. So grab your clickers. Parents who are first cousins are roughly how many times more likely to have a child with a significant birth defect than parents who are unrelated. Is it one, more than 50 times? Two, 10 times? Three, five times? Or four, two times? Looks like we got most of our responses in. So for all of us, so for couples that are unrelated, the chance that you might have a baby with a significant birth defect is around 2%, so 2 and 100. If your first cousins... Let's see it. Our guess, this looks like our largest guess is 10 times, and then also at two times. So if you guessed twice as likely, you are right. So some people find this kind of surprising. So if you are first cousins, do your chances about 4%, so about 4 and 100. Okay, here's another question for you. So I have no family history of breast cancer or ovarian cancer on my mother's side, so I'm at a low genetic risk for these cancers. True or false? Let's see what we guessed. False, that's right. And do you guys know why? Well, that's because you have to consider also the father's side, even though a particular condition might occur in one gender or sex, you can still inherit risk for that condition. So for example, if you had breast cancer, in the example of breast cancer, you have to consider both your mother and father's side of the family. Okay, so back to Claire. What are some of the information that she needs to be sure to document if she's doing her family history? She wants to write the name of the condition. She wants to write the age that the condition was diagnosed, and this can be an estimate. Was it 50s or 80s? The age, if a relative has passed away, the age at death. And you also want to be sure to include people that are healthy. So if you have an aunt that's lived 110, that's helpful information as well. And as we discussed before, ethnicity or ancestry is also important to include. So where should Claire start? All of this in mind. What might she be thinking about? Well, a great place to start is just to ask yourself, if you think about your family, is there something that comes to mind that you're already concerned about? Maybe you think there seems to be a lot of this in my family, or maybe you have a relative close or distant that's been diagnosed with something particularly challenging and you're worried that you wonder about your and your family members' risk. So if Claire would start here, and if you were watching season four last year, around this time, around Valentine's Day, Claire had this evening of fun planned, but she kept having these dizzy spells, and by the end of the evening, she passes out and she ends up in the hospital and she's diagnosed with Wolf-Parkinson-White syndrome. So prior to this day, Claire probably had never given much thought to this condition. She learns that it's a heart disorder. Now, when she's thinking about her family health history, she decides to ask other relatives and she learns that her mother, in fact, actually has this as well. And so what does Claire do with this information? How does she make sense of her family health history? And with that, I'm going to turn it over to Jeanine. What's everybody doing? All right, well, let's see. Now, Claire has collected this amazing family tree. She's got some really good information. And so now what? What do you do with all that information? So one thing that's come up for Claire is that there is a condition Wolf-Parkinson-White. She probably doesn't know very much about that. So probably her family members don't know much about that. It's probably one of those conditions that nobody's ever heard of. So where would Claire go to look for some information about Wolf-Parkinson-White syndrome? Well, the good news is it's a lot easier to find good health information thanks to the internet. Of course, it's not too hard to find bad information as well. So one place to start that we know is trustworthy is Medline Plus. I don't know if everybody's been to Medline Plus or if you're familiar with Medline Plus, but it is a tremendous resource for information about health conditions, categorized in health topics and also disease-specific information. They have very cool videos and tools that you can really use to understand health conditions better. So Claire might want to go here first to look up information about Wolf-Parkinson-White syndrome. Also, the institutes, the National Institutes of Health, are made up of 27 institutes and centers, and each one of those often are focused on a particular disease or a particular organ system. So if I were Claire, I probably would go to the National Heart, Lung and Blood Institute to see what information they have on this condition. And then advocacy organizations are also a great resource for learning more. Here's the American Heart Association. I think I would check out that, as well as the Heart Rhythm Society. And probably after going through those resources, which is really just the tip of the iceberg, I will learn that Wolf-Parkinson-White syndrome is a form of arrhythmia, or it's in a regular heartbeat. It's caused by an abnormal electrical pathway that causes a dysfunction in the way the heart is beating, makes it beat faster than it should, and that can put someone at risk for a heart attack or sudden death. Most of the time, Wolf-Parkinson-White does not run in families. Most of the time, there's no concern about that. But it can be associated with other conditions. So she would be evaluated by a cardiologist. They'd do a full cardiac workup for her that might include an echocardiogram, an EKG, and maybe a monitor on her heart to see how her heart does over a period of time. And they might find something else going on that's contributing to the Wolf-Parkinson-White syndrome. And if that's the case, and the fact that her mom also has Wolf-Parkinson-White syndrome, their family may be one of the few where Wolf-Parkinson-White syndrome is actually running in the family. And there is genetic testing when you fall in that category for some genes that contribute to Wolf-Parkinson-White syndrome. And if Claire has testing, and she would probably be offered that by her doctor, and if they find a mutation in a gene associated with this condition, then they would have a better idea of how the condition might progress for her and her mom. And they would also have a better idea how to monitor her. And they would also give other family members the opportunity to have a genetic test for this condition if they happen to be at risk. We know that it can run in a dominant way, so it's caused by a single gene. So usually in familial Wolf-Parkinson-White syndrome, you inherit it from one of your parents. So if there's someone who's at risk, even if they haven't had any symptoms, they could go and have a genetic test. And then they would have more information about whether they're going to develop this condition, their cardiologist would be involved, and then they would probably monitor things differently. So in this case, it's really helpful to have your family history to know that you might be at risk for a familial form of a condition and to find out, you know, what you might do to learn more about that. Another test for you. So speaking of genetic testing, here's one. Genetic testing can identify all potential genetic conditions. Test me for everything, doc. What do you think? One is true, two is false. Let's see, how do we do? Most people got that one right. And genetic testing is available for lots of conditions, just not everything. And thanks to the Human Genome Project that finished in 2003 and some follow-up projects through the National Institutes of Health, scientists have a lot of great tools that helps them find new genes that are associated with diseases. So about 5,000 genes that are known to contribute to disease, and that number is probably going to continue to grow and grow. So we've talked a lot about genetic conditions that are caused by single genes, and we've also talked about conditions that are complex and that are related to multiple genes and how we live our life and what we eat and what we do can contribute to better health. So some kind of interesting tools are developed now for one of them was the health wear, CDC health wear that Sarah mentioned earlier. There are some other tools that are also out there that you can plug in all this family history information that you have, and as well as what you like to eat and just how you live your life, that using this tool you can find out what your risk might be for type 2 diabetes. Here's another one from the Washington University School of Medicine who takes all of that information and you can get more information about what your risk might be for a number of things, emphysema, heart disease, osteoporosis, and then the National Cancer Institute has a breast cancer risk tool that you can plug in all this information. Typically this is used by doctors, health care providers, but it is available and they just suggest that you bring any result back and talk to your health care provider about what you learn. And so when you talk to your health care provider, they, you know, if you have a concern or that you use one of these tools and it looks like you may be at an increased risk for one of these conditions, you know, your health care provider can help you know if there's other tests that they might be able to do to further categorize your risk. Maybe there's more screening that you might want to do if it's something like osteoporosis that you have an increased risk for. You might have more bone scans or an X-ray. Maybe there you want to take a good look at your diet, make sure you're including enough vitamin D if it's osteoporosis or green leafy vegetables so lots of vitamin K. And almost on every list of what to do to stay healthy is getting lots of good exercise for osteoporosis. For example, you want to get weight-bearing exercise so you build up your bone mass and never smoke. So other things just to know about. So there's a single gene in the family, a genetic condition. There are a number of genetic conditions that are tested for in every state through whenever a baby is born. They are screened through newborn screening for a handful of genetic conditions and that the list is growing. And so sometimes conditions that are in the family check your newborn screen to see if that's already been tested for. And the treatments, there are a lot of good treatments for common conditions, rare conditions, maybe not so much. So get involved in research. If there aren't good treatment options, there are some places to go to find out what clinical studies are going on and how you might get involved to understand a condition better and to help in the development of new treatments. And finally, share all this information that you have with your family. Some families don't like to talk so much and some families like to talk a lot. So every family is different. So you do what you can with what you got. And save your family history in a good place, in a safe place so that you can go back to it. And you want to keep it up to date. You know, we always learn new things about how our health is. So we want to, you know, ask our families, maybe Thanksgiving, Valentine's Day, phone calls, you know, just check and see how everybody's doing and mark it down. There's important information. So that is the end of our formal presentation. I think we have some time for discussion and if you guys want to come on up and we can field any questions you might have, maybe 15 minutes or so. I also want to let you know that we have some good materials here on the table that some of them that we mentioned. We have, it has a lot of the websites that we've mentioned in the talk. So if you want to grab one of those to take that home with you, so you have that as a resource. And the other thing I want to let you know is we will all be upstairs at 3.30 in the genome zone and we will be available to talk to people one-on-one if you have questions. We also have other genetic counselors here who are from the Genetic and Rare Disease Information Center who will be at tables. So we can draw your family tree if you want us to. So you have that to take with you and you can ask any questions that you have. So I'll open it up for any questions that people have. Is there any disease that's been shown to be where they have mitochondrial PNA? Absolutely. There are mitochondrial diseases. There's a great advocacy group that is all for mitochondrial diseases where you can learn a lot about different mitochondrial diseases. In that case, if all there has you could be pretty sure. Right. Right. So if you're at low risk getting a disease or a life and you have a good lifestyle and you still get isn't that because I mean you're kind of eliminating a lot of uncertainty you zero in right on what makes you lost? That's a good point. That's actually something that... Oh I'm sorry. So you're saying that if you're at low risk and you have a healthy lifestyle and you can still get the condition sort of how is that possible? Is that what you're saying? Yeah. I think that that is something of interest. So if that would happen to you or a relative I mean just not... There's certainly two elements to that. It's like the science there to figure it out what's going on. And then there's us where we are saying well if that's my relative's case like what does that mean for me? And that's absolutely something that your healthcare provider if they were going to do a family health history would be looking for relatives just like that. If you have relatives that are diagnosed with a condition that have no other risk factors for it that's one thing that they're looking for in assessing your own risk and certainly if that was you as well in the context of it in sorting out certainly any time a research study is done I mean there's different criteria and things that they would be looking for. And some families have in that case genetics was playing more of a role in developing that condition whereas in others you know you're playing less than your lifestyle is playing more of a role. So it varies. Yeah. For environment. Yeah. Question? This is under the... My mother I took molecular biology a while ago and I took that there didn't seem to be any heritable traits or purposes. So it was probably the environment. They all grew up on the same... in the same household. So that's where I just always assumed that we never really had it. Possible environment or you always have to look at the tests too and what is it that they're testing for and may there be might there be something unique in your family that isn't being captured by the tests that are there and so it's true. I find it one thing that drew me to the to the genetics field of genetics or biomedical sciences the pace of discovery and I can tell you and you know if I had gotten a question seven years ago about a particular disease and I looked it up and tried to figure out about risk factors and testing I would get one answer. I go back there today on that same condition and I do the same research and see what's out there. It's completely different and this is for myself too. So when I'm thinking about my family history I think about the conditions in my family and I don't close the book when I've done one assessment. I kind of keep it open and I don't take that for... I don't take my knowledge for granted when people call in at the information center and ask me about risk because I always do a fresh search because if there's one thing I know the information changes the tests change. I'm learning more and more every day. It goes very fast. Are there some reputable companies that one can get DNA tests with? There are... Oh, are there reputable companies where you can go and have a genetic test? There's a lot of this that's been privatized for their saying they can bring back this type of information. So where do we get this information? Well, and how do you make sense of what you get? And that's the challenge. So there are tests that offer something like this blanket screen and actually I think we'll see more of it and there are some hospitals. Cedar Sinai now expanded screen that they can offer a couple prior to pre-conception counseling 100 conditions. When I was in school five years ago that did not exist. So it kind of gets to... But you still have to... The danger is making sure you have a full understanding of what the information is that you're getting because if you don't know anything about genetics and they give you information like me living in the field I'm kind of skeptical because I see how information changes and our knowledge changes and one minute we think this ten years later it's the paradigm has shifted and so I think part of it is yes there are tests that it's hard to predict how your result is going to help you individually. Is it going to confuse you? Is there information that your doctor can really use? And so it's not always even about what companies offer the best test. It's kind of what information is available to you as a patient and consumer to make sense of what you find and making sure that there's systems in place that you don't misinterpret it because you might make different decision. It may change how you... You may be assuming that your risk is much higher than it is given a test result or vice versa that you're safe and yet you're still at risk. And the other piece of that is this is very new. They're learning... It's very early in the game in terms of determining genetic susceptibility based on your genetic makeup. So they're learning more and more. They're getting a lot more information about it but it's still very, very new. So the question is is the information that you're getting back really accurate? Is it really reliable? Is it something you can really say, yep I do have an increased risk because there are studies where you've gone to one company and then another company and they tested you for the same disease and you get three different risks. So it's still early in the game. So I think that's in the future probably going to be something that will be available to people. And the cost of doing those kinds of tests continue to go down. So it used to be something you'd have to pay a Ferrari price tag for and now it's more like a Nintendo. So and then it's probably going to be soon a Pachycom. Maybe not that low. But you know, so it's just definitely coming. I think it's a little early in the game at this point, which is why 23andMe and FDA wanted to step back a bit, take a look and see is this really giving us reliable information. I don't know for sure how reliable your ancestry data is. I'd say it's, you know, I'd say you have to look at what they're telling you in the company's documentation and make that judgment yourself on how reliable it might be. Any other questions? It's burning. And of course we will be available afterwards if you have one-on-one questions you'd rather ask. At around 3.30. Thank you for coming. And thank you for taking part with your clickers. Oh. Oh, give the clickers. Oh, we have a couple more questions before you go. Yeah, if you want it. Before you turn in your clicker, gene therapy is available for and can cure many genetic disorders. What do you think? Oops. Oh, sorry. Jump the gun. 53% said false. All right. That is right. There are, gene therapy is really new. Talk about new. And there are some diseases that can be, gene therapy is used for, but it's only a handful at this point. Let's see what else we have. This is my favorite question. Okay. This is one near and dear to your heart, too. This one is, does having twins run in the family? Is it either no, identical, but not fraternal twins? Fraternal, but not identical twins, or both? And my husband is an identical twin. So I really need to know the answer to this because I need to know whether we're going to have twins or not. I hope not. I'm going to do my research on this one. And I think almost everybody's responded. A couple more. Punch them in. See what you said? Most people said no. A few people said both. The answer is actually three, fraternal, but not identical. So we know that fraternal twins is caused by when a woman releases two eggs at the time of her ovulation. So that can actually be inherited. It's a genetic trait for releasing multiple eggs. So it can run in families. So remember, it's coming. It's obviously expressed in women, but it can be inherited from both men and women. So it sometimes may appear to skip a generation if there was a father and then who had a daughter and then she had twins. So identical twins is caused by after conception when the embryo splits in two. And that's not thought to be inherited, although there might be some, there are some families who do have a slight risk, but right now they think that it's just really more of a chance to have that happen. So the jury is still a little bit out, but for now we are under the impression that it's fraternal, but not identical twins. So if you, I'm safe. So I'm happy about that answer. Okay. I think that's it. And also just here's just the slide that lets you know that if you need more information, there's a lot of great booklets here, but if you want to order more for some reason you think they're useful for something that's coming up for you. I know some of you are classroom, are in the classroom. These may be useful for you to, these are a guide to family health history and a guide to genetics and health. These are both really informative and helpful useful books. So yeah. And we also want to say in our handout here too we do have information about the center that we work for, the genetic and rare disease information center. We call it guard for short. And we're all available every day. We can call and ask us questions. You can write in. Yeah. We get stuck out there. Yeah. And we get individual answers to every question that comes in. So we're more than happy to help. Thank you for coming. Thank you. Appreciate it. Don't forget your clickers. Yes. Hand in your clickers. Thank you.