 Welcome to our DNA Day 2021 virtual celebration. My name is Kim Jacoby Morris, and I will be moderating today's conversation with our panelists. All opinions shared today are our own. I'm honored to share this space with my fellow adoptees, Damon Davis, He-Wan Lee, and Tim Houlton. Today, we will have the opportunity to discuss genetic ancestry testing, identity, and the adoptee perspective in celebration of DNA Day. DNA Day is a global movement to mobilize, energize, and empower communities, educators, and students to innovate, collaborate, and discover the promise of our shared humanity and connection to the natural world. This panel brings together adoptees with unique experiences and expertise related to the accessibility of direct-to-consumer genetic ancestry testing. We're excited to have the opportunity to have a conversation about the power of community, the limitations of technology, and the ethical, legal, and social implications of genetic ancestry. First, some guidance for navigating the shared space today. Practice, reflect, and respect. Everyone is coming to this space with their own unique experiences. Terminology use, such as birth mothers, biological family, first family, and others, is not meant to cause offense. This is a space for all members of the adoption constellation. If harm is caused during our conversation, please stay for the post-program so that we can address any issues. Questions will be answered during the Q&A portion of our program. Please place questions in the Q&A box on your Zoom window. The program will formally conclude at 7 p.m., but the conversation will continue for those who wish to stay. Please raise your hand, and our moderators will unmute you. Today, we are discussing direct-to-consumer genetic ancestry testing. This is a fancy description for kits that people can purchase and send a sample away for analysis. You can gain more insight on topics such as genealogy, disease-associated risk, and lifestyle factoids. Many commercial companies use a method called genotyping. Although we are 99.9% identical, positions of variation are called SNPs, single nucleotide polymorphisms. This technique provides information about specific positions and is highly dependent on the reference samples used in analysis. This is not the same as sequencing. We will learn more about this later on. But now, it's time for a poll. Gerald, could you please post the poll? Did you know there are approximately five million Americans that are adopted through foster care, inter-country adoption, or domestic adoption agencies? With the decreased costs and increase in accessibility, many people are considering using genetic testing or have already submitted their samples for analysis. Our audience here is about split. So we have 43% who said yes and 55% said no. And the poll, great. So I hope we all are excited to learn something today from each one of our panelists. Let's stop sharing. And now I'd like to invite author and podcast host, Mr. Damon Davis to introduce himself and share his personal story with us. Damon, welcome. Of course, I did the classic thing on mute. Kim, it's so good to see your smiling face. Thanks so much for bringing us together. I really appreciate it. It's good to be here with you when you wanted, Tim. Again, I'm Damon Davis. I'm the host and producer of the Who Am I Really? podcast where I interview other adoptees like us here on this panel about our own adoption journeys. I take everybody through sort of the beginning of the adoption journey with how you grew up in adoption or even foster care. And then eventually reach a point where we talk about how you may have gone about trying to find your biological family. And many times that journey is, part of that journey is through DNA testing and consumer DNA testing. So I should probably tell you a little bit about my own story. And then I'd love to turn it back over to Kim. So part of what happened for me was I was about to take a job in the Obama administration back in 2008, 2009. And it was at that moment that I was sitting at home with my son who was an infant, the first blood relative I had ever known when I realized this is an impactful thing for me. Like I've never known anybody else I was related to until my wife and I produced somebody. And so it was then that I decided to go on a search from my biological family. I was very fortunate that my social worker in Baltimore City was able to find my biological mother, pardon me, working around the corner from me in Washington DC when I finally took the job at HHS. And I had a fantastic relationship with her. I was able to see her almost daily anytime I wanted to. And what that afforded me was an opportunity to get as much information as I could from her. And one of the things that I naturally asked her was my origin story, what happened in chapter one of my life before I was adopted. And what she told me was that she got pregnant in Detroit and that she fled and she never looked back. And I asked her who my biological father was and she named a certain individual. But I could see the pain in her face as she sort of recalled what happened to her so long ago. So I decided I would hold off on trying to find this guy. I was having a great relationship with her. I didn't need anything else. But then unfortunately she passed away several years later. And what I realized was I can't hurt her by resurrecting this guy's presence. And so I sought him out to cut a long story short. I made contact with this individual. I tracked him down using internet resources and things like that. And after some correspondence back and forth, I didn't really get along with this guy. I wasn't really feeling him. He sends me a note and he says, I apologize, my phone's ringing. He says, I'm not the guy. And I said, I can't believe this. And so how could he possibly know that? Moving on, my wife's mother, my mother-in-law, she is also adopted. And so we were doing some DNA testing to learn a little bit more about her as an adoptee and therefore how she relates to my son. And it was in that DNA testing that we submitted samples for everybody in our immediate family. And what ended up happening was I'm sitting online one night and I'm looking through our ancestry DNA results. And as I'm looking through the results, I saw something interesting in my family's results. So I decided to look over at my own results and see the sort of same interesting factoid there. And as I was scrolling through, I noticed I had all of these family relationships that I had not acknowledged before, but one very specifically stood out and it said, this person is your father. It was a very unequivocally undeniable, just very stark proclamation for this person who I had accidentally and very randomly discovered when I wasn't even searching for him. To cut to the end, fortunately, it was a great reunion. His name is Bill. He's been an amazing individual, welcoming, warming, warm and accepting as was my mother Ann. And it's been sort of, it was a fascinating journey partially because I wasn't expecting to find this person. I was doing DNA testing for a completely different reason, not expecting the result that I got. I did not have hopes for the submission of my DNA test. As a matter of fact, I had already done another DNA test through 23andMe and I met Ann Wojciki who handed me my test. And so I was not enamored with my results as much when I did my ancestry DNA. But what I wanna say is that I find that it's fascinating that you can make some of these random connections accidentally and some of them can be small, third, fourth, fifth cousins. Some of them can be huge, like me finding my biological father. So that's my personal story. Let me be quiet for a moment, turn it back over to Kim and see if you've got any questions. Thank you so much for sharing that. I am always just so amazed with your personal story and it's I think a story that so many people long for and connecting with biological family. But I wanna return to this phrase that you actually taught me and explore it a little more. You often use the term adoption constellation. And I think it's a really beautiful way to describe the complexities and how families are structured, our connections to people. So I'm wondering, how do you see genetic relatives, those third, fourth, fifth cousins fitting into the constellation? It's a really great question and it's timely because just over the weekend I was on a Zoom call where my paternal family is arranging a family reunion to which I'm invited. And I remember thinking, this is gonna be weird. I've never met these people before, but we are family. And so to have that genetic connection to strangers is a very weird thing. I love the word adoption, the phrase adoption constellation because as I was writing my book and as I've come to interview well over 150 guests on the Who Am I Really podcast, what I've come to realize is there are so many people who are part of a person's journey through adoption. They're birth parents at conception. It's the decision to give birth to the child and then where does the child go next into foster care to a relative. There may be a kinship adoption where a relative adopts the child and is not raised by their biological parents. There are court systems involved and representatives who have the child's interest in mind. And then as you go through your adopted family you have all of your siblings, all of your aunts and uncles, people whom you have a familial connection to because they are the people you grow up with. They are the people who hopefully love you, nurture you, take care of you as you traverse your life. And then there's this whole other set of people that you don't know that are biological to you. They're out in the world somewhere. You feel like you could pass by them on the street or you might feel like you'll never ever see them again. And so I think it's challenging to only speak of a triad because there are so many people involved in adoption. My social worker was a component of my adoption when I was younger. There was a social worker who came to evaluate my adopted family. I had a separate social worker who supported my search for my biological mother and located her in Washington DC. There's social workers, court systems, families of all kinds that are all part of this constellation. I think that's beautiful. Thank you so much. So before we get to any deeper questions, I'll leave those for our group discussion a little bit later, but I'd like to now welcome Mr. Tim Holton, our next panelist to introduce himself and share his personal story. Welcome, Tim. Good evening. Thank you, Kim. Good to hear from you, Damon. That was a great beginner. I am going to talk about, well, first let me start off by saying my name is Tim Holton. I live in Maryland. I grew up in Maryland and I was adopted from Vietnam in April of 1975. I've basically grown up in Maryland. But my point of view on the whole DNA thing is it probably won't come off as rosy as some people think because I'm more of a person that's, I wouldn't say negative about it. I would just say that I look at it with caution and discretion. I, for the longest time, I was against giving my own DNA done. My mother would keep harassing me and asking me why I didn't want to get it done. And I would just nonchalantly tell her because I didn't really care to get it done. I was, what, 34 or 35 when I actually had done it. And at that point in my life, I was like, well, if I haven't found any relatives at 35, would it gonna hurt me not to know any longer? The other thing is as I look back and people ask me why I was so hesitant, I was more concerned about the fact that I don't actually trust, I know this sounds horrible to say, I don't actually trust the people that actually have my DNA. I don't know if they're gonna use it in some nefarious way or if they're gonna use it for just things that I haven't agreed to that my DNA would be used for. The also the other thing is, is what happens if I'm connected with somebody and they show up at my door or I would actually shut up at their door and they're thinking that this is a surprise and it's an unwanted kind of welcoming. So for me, it was also a privacy thing, like do these people really want to be sought out? Do these people really care to see me or know of me? I'm sure that they probably giving up adoption was hard and everything, but at the same time, what gives me the right after 35 years at that time to walk right back into somebody's life. I also didn't want to think of it as an identity thing considering the fact that I grew up thinking oh, my past was heritage is Vietnamese and what happens if the DNA test comes back and says I'm completely something different? Not that being another culture or race would be different, it's just that if you've grown up your whole life thinking you're Vietnamese and then all of a sudden somebody says well, you're actually from Korea, not that that's bad, it's just that it's like, well, I spent all those years growing up trying to learn about Vietnamese food, the culture, the language, and then I get told that I'm not. But long story short, when I did get the test, I did come out 100% Southeast Asian so that put my mind at ease on that. But then the next question my mother had was why don't you pay the extra amount of money to see for any genetic, I wouldn't say flaws or deficiencies, but more like history and I said no. And the reason I said no is because I don't want to know if there's a history of Alzheimer's or some debilitating disease and I really don't want to know because I worry about things just naturally and to find out if Alzheimer's runs in my family that would really freak me out and I would spend most of my remaining life obsessing about something like that. So I guess to bring this to a close, my whole standing is that I was totally against it for privacy reasons, also for personal reasons and that I didn't really feel safe or comfortable with knowing my own past, I guess, genetic wise, but I did do the test again and I just stopped at knowing if there are any people related to me. I have found a few people, but they're either really distant on the chain or I have recently found somebody who's second cousin. So we've been speaking more like through texting and everything, but I don't think I will ever feel comfortable knowing my DNA is out there in some data bank just, you know, waiting to be, I know I've probably watched too many spy movies or things like that, but I just, again, I just feel paranoid about our DNA being falling into the wrong hands. Unless they clone me and then they can do the work and I can stay home, that would be the good part, but seriously though, I do think about that and I do think about that unexpected, you know, reuniting with somebody and then finding out that they didn't really wanna reunite or finding out that I didn't wanna reunite. So it goes both ways. Thank you so much for sharing, Tim. I think your concerns and considerations are very valid and things that we'll be able to discuss a little more in depth in a moment. I'd like to ask just one follow-up question and right now, why do you think your mother kept pushing you to take a test? I think in her mind, because I lived in Vietnam in my early 20s, I took some time off from college to discover myself and work in orphanages and while I was there, we did have a translator so we did, took my paperwork, went to the Mekong Delta where I was born, tried to find some answers in closure. I always tell my mom that my closure was just standing foot in Vietnam. I didn't really need to go that whole route of seeking. I think I view life in a more pragmatic way where I was just like, I'm here, I've dealt with this in the past, I don't know if I'll ever find my biological parents and that's okay. So I left it at that but then my mom kept pressing and saying, well, wouldn't it be interesting or wouldn't you wanna know if you had brothers or sisters or any living relatives? And I said, yeah, I guess that would be cool but I'd also view it as just because we're blood doesn't necessarily mean I'm gonna get along with you or I actually wanna hang out with you or we're actually gonna look the same. I do believe that family, blood is people, in my mind, I feel like family is who you wanna be around, family is who raises you, family are the people that you surround yourself with and you call a family, it doesn't necessarily have to be blood. But my mother is a social worker, what was a social worker, she's retired. So I think part of her whole thing too was just trying to help me find closure when I kept saying that I'm really okay, not knowing. And if something comes along and I find somebody, that's great. But again, it's just like, I've been part of the adoptee community for Vietnamese people and I've spoken on numerous panels and I've met some adoptees with similar backgrounds as mine. Being adopted from Vietnam doesn't mean I get along with them. So at the same time, what makes me think I'd get along with somebody who's biological. Thank you for sharing your personal story. I'm so excited to dive a little bit deeper in a moment but I'd like to welcome our final panelist, genetic counselor, Huan Lee. Huan will be sharing some slides during her opening remarks as well as her personal story to provide a perspective from a healthcare provider in this space. So thank you Huan and welcome. Thank you so much and it's been just a pleasure to listen to Tam and Damon and your stories and Cam and everyone to thank you for having me. So yeah, so I'm actually coming from a slightly different perspective. I'm Korean, I'm adopted as well. And way back before I became a genetic counselor and went back to school, I actually was really very curious about my genetic biological family and actually thought like, hey, I'm gonna start a company and see if we can connect adoptees. And this was actually before 23andMe and Family Tree and Ancestry are really popular. And I did some research and I actually was starting this nonprofit and trying to get a board together. And I just realized, you know what? I do not have the education and the background that I really wanted about genetics and connectivity and community. And so I actually went back to school and became a genetic counselor. And I'll tell you a little bit more about, you know, what that involves. But, you know, it's one of those things where I really do respect, you know, what Tim was saying too, like sometimes you just don't wanna open the door. Sometimes you wanna kind of make sure you can kind of keep what you wanna know in a space that feels really safe and comfortable. And, you know, I think some people really wanna go the full gamut and find everybody and fourth cousins and other people really don't. And so I think with genetic testing and genetic counseling, whether it's, you know, through clinical or direct to consumer, it's really important to respect kind of how you're approaching it and what your feelings are about it. One of the things that I say for, you know, when I'm approaching it from hell, so I'm a genetic counselor in oncology. So I'm coming from kind of a cancer risk perspective. And so I'll kind of be framing a lot of, you know, some of my slides, just a few slides, I promise it's not a long presentation, but I'll just kind of try to go through it quickly. And then, you know, we can talk about it later as well. Next slide please. So some of the common issues that we adoptees face, especially if we don't have a lot of, you know, biological family history, is that we just don't know what our risks could potentially be for cancer, heart disease, et cetera. And then many of us are getting older and we have biological children. And so we may think, well, what about their potential risks? And I think, you know, myself, and I've talked to other people who get very frustrated with working with healthcare providers that, you know, you've said you've adopted, you put it in your chart and, you know, you still have to face all of these family health history forms or you have to go through all these, you know, different pages so you get to click adopted. And so there can be a lot of closed doors for screenings and interventions that may be offered to other people with family history. And then finally, you know, genetic testing, whether it's direct to consumer, whether it's in the clinic, it's really varied. There's a lot of different types. There's a lot of things out there. And so how do we choose the most appropriate test? Next slide please. So as far as this is just a really, you know, top level, not nitty gritty, but just some of the basics things I wanted to kind of go over with genetic testing is that, you know, a lot of us are very familiar with the direct to consumer. It's like 23andMe or other companies where we just order something, you spit in a tube, send it back. And so it's really self-directed. You can choose which one you want, which type of information you'd like, you know, for traits or ancestry or health or none of that. Just maybe sometimes people want to just find out if they have biological relatives. Whereas clinical genetic testing is, you know, in a clinic with a healthcare provider, usually a genetics professional, and that's guided and ordered by that person. And then kind of back to direct to consumer testing, a lot of people really like how affordable it is. It's, you know, it can be under a hundred bucks even. Some of it's a little more, but, you know, generally it tends to be a little bit more affordable than clinical genetic testing. So some people really like to take that route. One of the things that I talk about as a genetic counselor is that sometimes when we, Kim had mentioned genotyping in the beginning and SNPs, and it's kind of like direct to consumer testing is like if you look at a page, direct to consumer testing is like looking at little words on a page. But if you, on the flip side with clinical genetic testing, it's more comprehensive. You're reading through all of the words, you know, in a sentence or the entire paragraph. So, you know, sometimes people will say, hey, I took a direct to consumer test and I'm negative for these, you know, traits or conditions. But they're only just looking at little pieces of common variations that have been found in people. But if you do clinical or medical genetic testing, you know, you're gonna be getting a comprehensive read, a lot bigger and more information. So less risk for that false negative. One of the downsides for direct to consumer testing is it can be little to no support for a genetics professional. So sometimes they offer genetic counseling with some of these companies and sometimes you don't, sometimes it's not built in whereas, you know, on the other side, you would have that support from a genetics professional or genetic counselor and then kind of know what next steps to take for a follow-up. As Tim was talking about, there can be a lot of privacy and security issues. I think many of us have heard of the golden state killer and some of these other very, you know, widely publicized cases where DNA was found on a cup or a napkin and then, you know, it was found through all these third party databases. And definitely you just don't know how your DNA and your information might be used with some of these, you know, larger companies versus, you know, there are some protection laws with medical and clinical genetic testing like I'm listing HIPAA and Gina and those are two different ways to protect, you know, health information and prevent discrimination. And then finally, consent is not transparent. So you don't may not know or may not read all of the fine print when you're consenting for a direct to consumer test but hopefully the goal for a clinical genetic testing is informed consent. So sitting down with a professional talking about risks and benefits and really just kind of understanding, you know, what you're getting into and kind of how the lab is using your information. Next slide, please. One of the things that I, you know, when I became a genetic counselor and I really started understanding how the medical profession uses family health history, it can be really great if you have family health history, but if you don't, it can be really alarming. So I put some examples up and again, I'm coming from the cancer world mostly and I have a kind of a prenatal one at the end, but, you know, let's say a person knew that their biological mother had breast cancer at 45 not even, you know, thinking about genetic testing but really the guidelines now are like start 10 years prior, you know, so that then a person would get a mammogram at age 35. Now let's say we don't know anything. So let's say we're an adoptee, we don't have family history, then we would start at 40 or 45. And so if you look at the, you know, the difference maybe five years isn't a ton or, you know, 10, but at least, you know, if you knew you'd get a head start and be proactive. Same thing for colonoscopy. So let's say you had a bioparent with colon cancer at a certain age, then 10 years prior you'd start your colonoscopy. And so that's even a more dramatic, depending on, you know, how if you knew your bioparent's actual age of onset for colon cancer, but again, you know, adoptees are left out of some of these screenings because we just don't know. And I really feel like that's a disservice. So while family health history can be wonderful, it's the gold standard. How do you contextualize somebody? If we don't have it, it doesn't seem really right to just be like, well, now you're back to average population when maybe some of us are not. Finally, the last example I have is like, let's say there's a recessive condition like cystic fibrosis or some other kind of, you know, condition where it takes two parents to have a non-working gene that gets passed down to a child. If you don't know about that, you may not even, you know, it might not even be in the arena to consider like, well, maybe before I get pregnant or do family planning, I'm, you know, maybe I'll get that preconception genetic testing, but if we don't have family history, we might even not consider it. Next slide, please. So one of the things that just a really brief overview with genetic counseling, it's, you know, we get a master's degree when we get training in medical genetics and counseling, and we really talk about, you know, inherited conditions, how that affects a person and potentially their family. It's really about education, it's a conversation. There's no pressure to get testing. Sometimes I get patients coming in really worried about that. And we're licensed and credentialed in many states and as well certified, you know, we're board certified. And so it's just a way to go many different areas with cardiovascular, prenatal, cancer, pediatric. So there's a whole host of areas that genetic counselors can help. Next slide, please. Some of the benefits and limitations, I just wanna keep it quick. So I'm not taking up too much time here, but really again, like the benefits of genetic counseling with a genetic counselor would be informed, you know, decision-making, having that education and understanding what you're getting into. And then, you know, the discussion of testing, the next steps, and then if there is a positive result talking about appropriate referrals for screening and like what do we do next with interventions, potential life-saving, risk-reducing surgeries. You can help with family planning if there's something that's discovered that you person doesn't wanna take the risk of potentially passing that down to a biological child. You can have assisted reproductive technology or at least explore that. And then there's typically a lot of support for that patient or person and their family if they're biological, you know, what to do next and kind of next steps for them. And of course there are limitations. It's not perfect. Genetic counseling and genetic testing cannot cover every condition. And even if you're positive, it doesn't say for sure that you'll get the condition or how severe it might be. So there's definitely some limitations there. It's not a, you know, be all and all. Sometimes results are inconclusive. You know, it's really the worst thing to get back from a test, but you know, there are ways to sort of sift through that and figure out how to take next steps even if something isn't a, you know, stranded black and white positive negative. There's some psychosocial concerns. And, you know, Tim touched upon a few of them. Some people don't wanna open the door or maybe they kind of do, but then when they find out they wish they didn't. So it's really, you know, we really want people to feel supported and ready to take that, that, you know, make that next step if they want testing, but also have proper and good support because you're gonna have a lot of feelings come up. There is a fear of genetic discrimination, you know, how could an insurance company like life insurance potentially use a positive genetic test result? So we have federal laws to protect against, you know, employer and health insurance, but there are some private entities that don't, that may be able to look at, you know, a person's test. And so that does cause some trepidation for people. And then finally, you know, there might not be published guidelines or screening or treatment. So sometimes we'll get a result but not yet have anything to treat or have a next step and that can be frustrating as well. Next slide, please. So one of the things people have asked me and Kim actually asked me before this presentation or talk is just, well, how can health providers be sensitive and open that door? Number one thing that I hear from adoptees that I've talked to anecdotally is just read the chart, look at the forms, prep. You know, I really personally too, I just hate having to tell every single provider I go to, I'm adopted. Oh, I couldn't fill out all those forms because I'm adopted. It's, it can be maddening. And then, you know, but don't pity us. You know, don't ask about the adoption story. I've had a lot of people just say, oh, you're adopted, well, how did that happen? And that's a really personal thing that I'm willing to share with people I know and trust but not just right off the cuff, you know, person just taking intake. And so sometimes it can be really traumatic for people to talk about it and to sort of address it every time they go to the, you know, the doctor or a provider. I really would hope that healthcare providers take adoptees seriously and explore like what are their goals and motivations surrounding their health. And, you know, sometimes I've had people say, oh, you're adopted, well, sorry, you can't really help you. That's just, that's not good enough. That really needs to be, you know, new training on how to sort of like, what can we do next? How can we help? Which leads me into thinking outside the box. So if there's no family health history that we know of, you know, what kind of screenings can be done for the person? How can we start building a medical and health history for you with the adoptee? Which could be helpful if you have biological children or other relatives that you, you know, come and counter with. And then finally, I really would love healthcare providers to say, you know, this is a little bit out of my wheelhouse. I'm gonna refer to a genetic counselor. And so if they wanna know about cancer risk or cardiology or neurology, you know, I refer them to the appropriate person. Next slide, please. And then lastly, this is my last slide. Thanks for hanging in there. So really how can adoptees open the door? So I, number one thing is be really proactive about your very own screening. So that would be routine screenings like mammograms, cholesterol, diabetes, colonoscopies, like get your colonoscopy. They just, American Cancer Society just changed to 45 instead of 50. So that would be something to get that jumpstart on. And then there's risk calculators that can be based on your personal health, like the American Health Association, the Heart Association, and advocate for yourself. If someone's like, oh, sorry, you're adopted. I'm not gonna help you, you know, push back and say, you know, I think you can help me. Here are some ways I'd like to get screened. You can seek your own certified genetic counselor by going to the National Society of Genetic Counselors. There's a whole bunch of counselors throughout all of the US that can be there to help you. One of the caveats though, is that many times because insurance will not cover you, if you don't have a personal history of a condition, you may have to pay a cash price. So, and that can kind of range depending on what area you're in, but just to be prepared to talk about that. And then to really talk through with your genetic counselor, a genetic professional, some of the benefits and limitations of going through that process. So thank you. I'm sorry, it was a little more formal than everyone else, but you know, I really appreciate this opportunity to share this information. Thanks, Kim. Thank you so much for that very informative talk. I am sure that I learned some things and I'm sure the audience members learned some things to take away for sure. So at this point, I'd like to bring everybody, all of our panelists together and have a little bit of a conversation between the four of us and then open it up for Q&A from our audience members. So getting back to Damon's story on using ancestry.com to find connections between your biological son and your mother-in-law, I believe. So we've sort of touched on, there are different cost benefits for folks to consider. Can you talk about that experience and when you were participating in that, did you have any hesitancy? Yeah, it's a great question and it's funny as I listened to the others on the panel, I think to myself, man, I probably should have been more cautious about this. But quite honestly, I mean, I was gung-ho about it. I was gung-ho about it because I came into DNA testing from kind of an odd angle. I mean, quite literally, I was traveling for work with HHS. We had a meeting at 23 and me and Anne Wojcicki handed me my DNA test. Had she not done so, I probably would not have purchased one myself, quite honestly. And because she did so, I then went back home and I said to Anne, my biological mother, hey, I got an ancestry, I mean, a 23 and me, why don't you get one? And so I went through all of the initial sort of excitement about what does a DNA test potentially show me? And I had all of that, the big reveal of what's culturally in my background. For example, I learned that I've got some Irish in my background, never would I have guessed, right? So there's this, I was curious about it from that perspective. I'm sensitive to what Tim and Hewan have underscored, which is the opening a door that you didn't know was there. So move over now to my ancestry DNA test. I'm sitting there at home, I've submitted the sample. I know I've got a result coming back that's gonna say something about me. A door was opened for me in that it, the system connected me to my biological relatives. And you'll forgive me, I don't recall if there's a checkbox that says, do you or don't you want to be connected with biological relatives? I feel like that could be a stage gate for people entering into a DNA test because if I was Bill, my biological father, it's possible that I did not want to be reunited with long lost people that are looking to connect with me. And it might not be a son, it could be some long lost cousin that he's just not interested in meeting other people at any point in his life. But here this 30 something year old son comes back out of nowhere that must have been pretty jarring for him. And I would imagine it's similarly jarring for a person who steps forward and submits a DNA sample and they end up being a undiscovered, unrealized sibling of someone else. And then that person is starting to question their father's, you know, what their father did when he was a teenager, what their mother may have done before they started that nuclear family. So there's this entire cascading effect of submitting a DNA test and not necessarily knowing all of the things that you have to consider. A lot of times people are, they put a lot of stock into a DNA test in the hopes of making connections and getting nothing. And then there are folks that stumble into it like myself and have an entire world open up of reunion. So to answer your question more directly, I did not go through sort of an analytical process of if I do this, what happens on this, you know, if I turn left at this, you know, decision tree. And if I don't do this, what happens if I turn right here, I didn't go through any of that. I just kind of dove in, but I realized that there are significant factors that need to be considered. I was thinking when Tim was speaking that, you know, I'm gonna make an analogy here and I hope that you will forgive me if it's not exactly correct, but the same way that you might submit your DNA to be, you know, tested and matched up with people, you're submitting a piece of yourself, you know, into a company that may do something with it that you, as he has said, don't know what they're going to do. Similarly, you know, the apps, tools and services that I have on my phone are listening and triggering and pulling back stuff for me and offering up. Hey, I heard you talk about Adidas, here's some shoes. And I'm like, oh, don't stop feeding me stuff. Don't connect me to things that I don't necessarily feel like being connected to in this moment. And there's a whole sort of consumer side that has potential for DNA results that I think we deserve to be a little bit leery of, given some of the things that have happened in the past in the medical and clinical industry. You know, I think there are elements of what Tim has said that are right. It's not necessarily something you should just jump wholeheartedly into and not think to yourself. I've just submitted a piece of myself, is as he won, I think said, is my insurance agency now going to have access to that and say, oh, he's at risk for colon cancer. We're going to cut off his insurance at an earlier date or whatever the thing is. Like there's a lot to be discussed there and to have strong thoughts put forth about because we don't want to just go ignorantly into the dark on something like this. And so now that you've already submitted a sample and participated in some analysis, there for most companies, I feel like there is a way to go in and kind of review the privacy policies and kind of walk that down. Have you ever considered revisiting those policies or it's just kind of like off in the past? You know, those policies are not dissimilar than any other policy. When I get a pop screen on my computer, I have never read any of them. And I scroll to the bottom because they make me do it so that I can click accept and then I can get onto what I was trying to do. And it's ignorant. I'm not informed. I will admit that, right? I'm being lazy because I came here for this thing. I didn't come here to read the rules of the thing. You know what I'm saying? And so, but I think there are ways to help consumers better understand more clearly what is happening with the DNA that they've submitted, what is possible in terms of its research use, its resale or what have you. It's benefit to you. By giving us your DNA, we are able to tell you more about yourself if you're interested, right? You might not be. So there's, but I feel like there's a lot of, there should be some more sort of very digestible ways to convey to the consumer out there. Here's what we do by signing up I'm telling you right now, these are the sort of high level things that we're doing and be transparent about it so that these companies don't end up getting themselves in trouble by selling off something they thought was on mundane and finding out that the consumer base was completely against that and is not in support. Well, I don't think you're ignorant. I think it's all by design, right? I think we're kind of conditioned to just scroll through these things and get to the product that we want. That's very, that's correct. So I'd like to, Tim, ask you a little bit more about what you shared in your story. You said that you were adopted from Vietnam quite young and you had mentioned that it was really important to your identity and your personal narrative and being Vietnamese. So will you share with us, what does it mean to you to be Vietnamese and can it be quantified? Growing up, I grew up in a mixed family. I have a brother and sister from Korea, not related until they were adopted plus my parents biological. So I always tell people I'm Irish, Norwegian because that's what my adopted parents are. Like, growing up, my mother would give me books and we would talk about what it was like to be from Vietnam. She had friends that were also social workers and director of adoption agencies who were either in Vietnam at the time of the end of the war or before. Look at postcards, pictures, and just go through all the history. So I guess identifying past as being Vietnamese was more of being told you're from Vietnam and this is what the food looks like. At the time growing up, I didn't think, but I don't think anybody knew that Vietnam was going to open up to the Western world again to be able to travel. It didn't happen until like, I forgot if it was the late 80s, early 90s, but I do know that it is opened up so everybody can go travel. But when I was growing up, I tried to, I mean, of course I was American and I wanted to be as white as possible, sorry, Caucasian as possible because that's the area I grew up in, but I also knew that I had a history of being, my background was from Vietnam. So I tried to find things to be related to Vietnam was important to me. Yet at the same time, I just wanted to be your typical teenager, trying to fit in like everybody goes through that, trying to fit in and just knowing that I had a different experience than most of my classmates and friends kind of, maybe just suppress the whole feeling as I got older of trying to seek out any biological family or anything because I honestly grew up in a small town and I wanted to get as far away from a small town because I wanted to be not as identifiable if that makes sense. When you're one of three Asian people in the whole school and two of the others are your brother and sister, I wanted to be more like in Silver Spring, Maryland where I am like one in a thousand or more Asian people in the area. I don't know if that really answered your question but I would like to say follow up on something that Damon had said in the fact that take Facebook for example, I think you said that how you feel like you're talking about something and all of a sudden you get an ad. I personally feel like there's only a matter of time before our DNA is monetized, where we are the product, where somebody out there is genetically finding out, if I take this sequence from somebody and take this sequence, maybe we'll have the best opium drug possible or best medicine, not seeing that medicine for humankind or humankind would be bad. I'm just thinking that it's only a matter of time before people start digging into the DNA and coming up with these cocktails. And the next thing you know, they're using your DNA to do something and you haven't really given consent and I don't want to be part of something like that. I mean, I know it sounds selfish but I don't want my DNA out there for anybody to just use. And Damon, you said you just scroll to get to the bottom and I'm guilty of that at times as well but I do believe at times the information, the details, the devils are the details, right? So maybe these companies are saying we're gonna do this to you. It's just that they know that we're stupid and we're rushing through it. And it's probably at the smallest point in the print where they're like, by the way, we're gonna sell all your information to every company just so for ads and sponsorships and to make our revenues higher. And I don't want to be a revenue generator for people. And unfortunately I'm already in the system but that's where I'll stop. So I don't want to find out anything else. I don't wanna know if I'm gonna die of cancer because I'll cross that bridge when I come to it. I'm not going out there poking, don't poke the bear, right? I don't want the answers right now. I'll deal with it when it comes. Ewan, I think your poise to answer this first question from the audience. What is the average cost of a clinical genetic test in DC? Oh, well, I don't know what the clinical genetic testing would cost in DC, but some of the bigger labs depending on your specialty. So I can answer kind of from the cancer realm. If you have to pay out of pocket, if your insurance won't cover the test, it's like 250 for some of these large panels for clinical genetic testing for cancer risk. I think preconception might be like 350. Don't quote me on the preconception, but depending if you're in pediatrics or if you're exploring something in a different realm, the cost can definitely be higher than 250. But that's always something that when you sit down with your genetic counselor or your medical geneticist or however you end up deciding where to go and what to do, that cost can be explored at that point. That's a good question. Thank you. So at this time, I'd like to go through several of the Q&As that we've received from the audience already. The first one, how important do you feel that DNA verification is when reuniting with biological family? I'll jump in. Honestly, I think it depends on you. It's a personal decision as to how important it is. And I'll give you an example in my own story. When I met my biological mother face to face is this incredible moment of riding the elevator down to go meet her on her floor, but she was coming to meet me up in the lobby. So when the elevator door opened, she's standing there and I'm looking right at her. I've never seen this woman before, but in my introductory letter to her, I included a picture of myself and a picture of my son and my wife. So she knew what I looked like. But when I looked back at her, I immediately saw my face on her and I knew it was her. And I didn't need a 23 and me DNA test to confirm it. We did it because I got one for free, but I didn't need it. It was clear, obvious and evident to me that that was the woman. However, I will say that in my paternal search, I would have probably had, I made an actual connection with the first guy. I could see how I might have questioned it if I didn't look like him. I found, even just in talking on phone with him, that we had very different personalities. He was very, very sort of boisterous, overbearing, like not what I consider myself to be sort of a more relaxed, laid back kind of individual. And I could just feel that we weren't connected in the way that I felt connected to Anne. When even when I spoke with her on the phone before I saw her, I could feel her essence coming through the phone. And I knew that this, I was connected to this woman. And so I think, again, it depends upon you and what you need. So with Anne, I didn't need it. With a paternal connection, I could see how I might have needed it. I'll tell you that I look incredibly just like Bill as well. So when we smile, I smile and I squint my eyes like he has that squinty eye look, which is really funny to me. I might not have needed, but I could see how I could have questioned that. And so I think it's a very, very personal choice that each person has to make for themselves. And I'll close with one final thing. It was validating for me anyway, right? I was born, I was taken off into foster care and never was there a connection. It was actually nice for science to say, hey, just wanted to let you know, you're actually a match. I found that validating, even though I didn't actually need it with my natural mother. Thank you for sharing that. The next question is, has direct to consumer testing normalize discussions about genetic testing and ancestry? What do you think, Yvonne? Well, I mean, I was just thinking about that. I mean, I think it's really come out into the media. It's a lot of different stories, the great ones, horror stories, the whole spectrum. I do think that, you know, people talk, one thing that I always feel really nervous or give warnings about and people are like, hey, do you think I should do this test? Like an ancestry test. It's like, you know, just like what Tim and you too, Damon were saying is like, you know, you don't know what's going to happen. Do you want to open that door? How do you feel about, you know, knocking in the door of somebody else? Like, you know, metaphorically and also, you know, there's some donor and ethical issues for donor raised children or donor created children. But I do think it's out, it's out there. We talk about it a lot. I guess I just feel like, you know, I once saw a couple who like did 23 Me For Fun and then found that they're both carriers of cystic fibrosis and then came to me and they're really nervous and scared about it. So that's kind of that caveat is like, you know, make sure you're comfortable with opening the door to multiple things. If you sign up for it and read the fine print, but I know I don't read the fine print either all the time. But I mean, if I'm answering the question, I mean, I do think it's good to be out there and ask for a talk about it. People know about it. You can have a point of reference. But for me as a genetic counselor, I often have to like backtrack and like be like, look, you're not going to be in a crime database if you have a clinical medical genetic test or, you know, there are privacy or laws and there's, you know, federal laws to protect you from insurance discrimination. So I have to do a lot of that to be like, don't worry about that part, at least from this thing. But if you go and, you know, order a test online and, you know, maybe do a direct consumer test, you may not have that same protection. The next question, did any of you experience any family or friends caution you against doing genetic testing for any reason? Not me. No, our genetic testing adventure actually started with my sister-in-law. She lives in California with my mother-in-law. And, you know, she's about 15 years, my junior, really young, energetic, bubbly, techno, you know, native. And she found out about DNA testing and was like, hey, mom is adopted. We should totally do DNA testing. And so we all dove in. It was, I don't think anybody really had any trepidation on my side. My brother did the DNA testing and he was totally opposite than I was. You wanted to know, I believe he wanted to know more. He wanted to know, like, what could he do to make sure his health was better and, you know, what the history of his biological parents had, or, you know, to make sure that he was living a good life healthily. You know, opposites in so many ways. And DNA is one of them. I'm more reserved and cautious about it. Whereas someone who I thought would be more cautious about it wants to know the answers. But I guess everybody wants to know to a certain extent of, you know, their health and how the past, how their generations have fared when it comes to living and, you know, dying. But me, I just, it's a Pandora's box, right? Once you open it and you can't put it back. And then if I find out something horrible, like I said, I don't want to live my life worrying. I just wait, let it happen. So this question, I can actually answer this one. Isn't the thought process different for domestic and for international adoption? I'm thinking of, oops, it just went away. I am thinking of a birth parent. I'm thinking a birth parent in Korea who has tested must have gone out of their way to try and connect. So the risk of rejection or being treated like an intruder should be low. So I can share that I have been in reunion with my birth mother from South Korea for two years. And they initially wanted to connect and then kind of rescinded that author and didn't want me to meet my half sister and adopted brother who lives in Korea. So I think it's just, it's a very complicated dynamic that can be evolving over time. But I think this brings up another point that maybe we can briefly touch upon and that is that you can also download your raw data from some companies. And I know that people do upload it across platforms and some of these organizations that do kind of collect this map on mass of the raw data don't have as good of a privacy protection or they kind of compensate the idea that, well, you can increase your chance of connecting but at the risk of your privacy and data security. Well, we are already at the top of the hour. I know we have a bunch more questions but at this point I'll formally conclude our formal program and then invite folks to stay on and continue the conversation. We have probably like 12 questions still in our Q and A so it's a very lively, engaging discussion. I'll thank our panelists and thank you for our IT support, Gerald, Mani and William May and I'll give folks a minute to transition and then we will go back to moving through the Q and A. So thank you for joining today's webinar.