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#103 Brianne Kirkpatrick on Adoptee Genetic Testing

by Kira Dineen
June 7th 2019
00:00:00
Description

On This Episode We Discuss:

Services WatershedDNA Offers

Motivation Behind Writing “The DNA Guide for Adoptees”

Differences in... More

how is it that we find ourselves surrounded by such complexity? Such elements made of DNA. Hello, you're listening to DNA today, a genetics podcast and radio show. I'm your host killer. Dineen JR. Today informed on what's happening in the genetic world. And during my broadcast here, I educate you the public on genetic and health topics through news and interviews and guests include genetic counselors like today researchers, doctors, patient advocates and professors. My guest today is Brianne Kirkpatrick. She's a licensed and certified genetic counselor with over 13 years of experience. She's a member of the National Society of Genetic counselors, International Society of Genetic genealogy and the National Genealogy Society. She has her own private practice watershed Deanna where she offers clients her expertise in medical genetics and counseling to provide support and information to those seeking DNA testing for genealogy and health purposes.

She received her bachelor's in biology and religious studies at Indiana University, followed by a masters in genetic counseling at Northwestern University. And for those that are longtime listeners of the show, She's a familiar guest. She was back on episode 56 in 2016. So thanks so much for coming back on the show. Thank you so much for having me again. Yeah, definitely. We had a great episode back then of talking mostly about genealogy and we'll focus more on the adoptee side of genealogy today. But before we get into that, I wanted to learn a little bit more about what you do and who you work with at watershed D. N. A. Yeah, sure. So um I do tell a consulting. So tell tell tell a genetics meaning consults over the phone or over video chat. And most of my clients are people who have already had testing. Typose direct to consumer tests ancestry testing 23 and me, things like that. And some people are coming before they've had the testing just to get a sense of what to know about tests before they get started.

And I would say most people have some familiarity with genetics but others are beginners. And so I helped them with understanding at the level where they are kind of matching them and saying, all right, this is what you understand about it. But maybe here's areas that you don't know too much about to be able to explain that to them so they can make informed decisions. That's the big thing with genetic counseling. Exactly. Yeah. And you recently co wrote a book, can you tease us a little bit about what that's about and who it's for sure. I'll be happy to. So my co author is Shannon Comes Bennett and she is a genealogist who's the author of another genealogy book called genealogy basics in 30 minutes. And she and I partnered up to write a book together that's geared toward adoptees. So there's a lot of interest in using genealogy and DNA testing in the adoptive community to identify the birth family because not everybody has access to their original birth certificate or is allowed to access their adoption file.

And so they've turned to DNA testing as a way of matching with biological relatives. And there's a lot of questions that come up that people have when they're just getting started or if they've tried other methods and just haven't succeeded yet. So the book touches upon how DNA testing works in matching people with biological family. It test, it talks about genealogy basics, how family trees are put together based on records that we can access like birth certificates and marriage records and things like that. And there's also a section on D. N. A. As it relates to health and medical topics. So a lot of adoptees have an interest in pursuing DNA testing because they don't have access to their family medical history and perhaps they're having medical issues and they don't have an understanding for why. And they're interested in seeing if DNA testing can help them. In other cases they are healthy but they're interested in finding out could there be something lurking that they don't know about and how can DNA testing help.

So the book touches upon all the other all of those different parts of questions that are comin from the adopted population and it's applicable to people who are also in other groups. So the donor conceived population have a lot of similar challenges to accessing their history and medical issues from genetics and family history can be such a great tool for people to use. And genetic counselors push that. A lot of saying if you have family members to contact to gather that family history. It's really great to be able to do that. But not everyone has that option. So this sounds like a really great kind of starter guide for people to dive into things and learn what's out there. So they can educate themselves to be able to again make those informed decisions to go ahead with either DNA testing or the other different options that are out there. What's different for the adopted community or you mentioned the donor and conceiving community compared to other people that are using these genealogy DNA testing services.

That's a great question. So a lot of people who got into genetic genealogy or in other words using DNA testing for genealogy purposes already had a family tree built and maybe we're using that DNA testing to either confirm their family or to expand the tree back farther back in time. And adoptees and people who are doing are conceived often start with no information. And so when they're coming to testing it's not that they have a family tree that they're trying to build back in time. They're start they're starting from scratch. And so they have a different set of challenges in how to interpret the DNA tests how to communicate with their matches. So when you do a direct to consumer test for ancestry or genealogical purposes. You have the ability to opt into matching databases where your D. N. A. Is compared with others who tested at that same company and then you're told that you match an estimated relationship between you and that other person.

And then you have the option of communicating with them either through an internal chat system at the testing company or over email. And so the adoptees and donor conceived population who are using the testing have to figure out how they're going to reach out to their DNA matches and explain their situation. And and sometimes have to wait to see if that person they're contacting is going to respond or not. And if that person does respond back and they're interested in meeting up or starting a conversation somehow. What's the best advice for people to prepare to be meeting these biological family members? I mean that can be a really scary process because it's an unknown of who this person is completely. Yes and I can see how it's how stepping into the unknown is overwhelming and daunting for a lot of people. So what I recommend people do who are in that situation is to reach out to people who have done it before.

And the best way to find out information right now is through becoming a member of some facebook groups. So there are facebook groups like DNA detectives and adoptee reunion and search. And these are facebook groups where people talk about their experiences and other people post questions and it's a place where there's a lot of information shared on how to how to use the testing, how to communicate. Um because DNA DNA can only go so far. It can't send the email or the message for you. It can't predict how somebody reach out to is going to respond and if they're interested in forming a relationship or are willing to share information or not. So turning to other people is the advice that I have and why is this so relevant right now as opposed to a few years ago. So even five or 10 years ago we didn't have the ability to use DNA like we do now the databases of people who had tested, we're still pretty small.

And so it took a lot of work and a lot of patients and a lot of waiting for people to get a close enough match to make use of that information. So these databases have just grown exponentially even in the past five years that it's made searching a lot more possible and a lot easier for more people. There's also more acceptance of using DNA to track family, more people are familiar with the use of DNA testing for that purpose. Thanks to a lot of news stories and tv shows like finding your roots and and there's just ways that people are finding out about how to use the testing for these purposes. And also there's newer tests on the medical testing market that weren't even available five or 10 years ago. So it's it's just a time where there's a lot of interest and a lot of availability now that once wasn't there. And as you said with the database of how many people are in this there's so many more people every day that are adding to this database that I think some of them have millions.

Is that in the ballpark? Yes that is in the ballpark. Even at ancestry D. N. A. Which is the affiliative ancestry dot com there in the multi millions of people in their database right now. And if we put all of that all of them together we're looking at you know 10 million plus people who have tested at all of the different companies combined. So there doesn't seem to be any signs of the tests popularity decreasing. If anything the tests are growing more popular as people become more familiar and comfortable with it. Um Which means that there are more people out there with questions and more online sources for people to learn. And what was your motivation behind writing the book this book along with your co author Shannon. So from that that's a great question. I'm glad that you asked it because both of us have experienced not personally being adoptees are having immediate family being adopted but through our interaction with genealogy have come into contact with people relate to us by D.

N. A. Who were adopted. And so both of us have helped our own DNA matches use the information that we have to help identify their birth family. Um my own family has has been affected by not having full access to all of our family history over time. So my grandmother was raised by family, she wasn't raised by her biological parents. And so we never had medical history for that side of the family. And that was one of my one of my main reasons for wanting to start watershed D. N. A. Is to help people that are either struggling without with with not having full access to family history, whether that's social, family history or medical history. And also just out of acknowledgement that it really does impact people's lives to not have a full full access to their history. Knowledge is power in these cases. And what advice do you have for those that are considering or maybe already have involved themselves in DNA testing for an adoptee related research.

I would advise them to um you know, check in on their matchless regularly and they haven't had success yet. Maybe consider testing it multiple companies. Um that's called fishing in all the ponds is the phrase that's used in the genetic genealogy community really. The wider you cast your net, the more likely you are to identify a biological relative and have success with your with your search. And does this change if someone is a minor so their kid maybe in the foster care system if they're trying to pursue this genetic testing to find biological relative? Yeah, it's a really good question and one that doesn't have clear answers yet because there's not a lot of regulation around who can order direct to consumer testing, especially in regards to minors. So there's no law that says you have to be of a certain age to do a direct to consumer test.

And this comes up in discussions. Often I would say within the genetic genealogy community online and then also within the genetic counselor community because there's a concern that Children are not fully capable of consenting to participate in a consumer testing database. And um, is it right for somebody else to make that decision for them before they're too young. But there's a lot of nuance to it because I can see it from the other, the other side that there's a lot of beneficial information that can come from the testing for Children. So I have to, to situations that come to mind. Um, 11 is a situation of a child who was in the foster care system and I received a call from the social worker who was in charge of that child's case and the judge was trying to decide where to place the child for foster care temporarily and had heard that the father maybe had some native american background.

And so the judge had asked the social worker to reach out and asked would ethnicity testing from an ancestry company be able to identify a native american tribe so that the child could could be possibly placed within that tribe for the foster care for the duration of them being in foster care. And I was able to help them understand that there are limits to ancestry analysis and that we wouldn't be able to identify a certain tribe. But I could understand how that would be helpful information and it would might actually help that child be placed in in a better situation. And so that was, you know, that's one example. Another situation I was involved with is a family that used a sperm donor to conceive their daughter and their daughter is now a teenager and she had gotten on the internet and learned about genealogy, genetic genealogy and wanted to track down her sperm donor just to know where she came from and who she was and just really hadn't had a strong need at that point of her of her life to understand where she came from.

And so I spoke with the whole family together. We talked about what are the what are the things to know going into this type of testing. So we talked about all of the limitations with testing, but also the benefits that could come from it. And the family talked openly. I gave them discussion points to talk about when we were off the phone, what's the worst case scenario? What's the best case scenario? Let's look into the fine print and make sure that you understand what you're turning over your rights to when you test with these companies. And the family ultimately decided to move forward with testing and we did end up identifying her sperm donor through genetic genealogy and DNA testing and it ended up being a really positive thing for the whole family. So even though she was technically a minor, it was a situation in which I felt that the whole family was fully informed and they really made the decision together.

So it's a tricky topic testing in Children. I think there's a lot that we need to be cautious about. But there is also benefit that can come from it. And a lot of great areas with testing in minors and in some cases like, you know, the sperm donor case, you just talked about, it seemed like everybody was very educated in terms of what they were doing, what the possible outcomes were going to be. But in other cases it may not be as clear as to whether that's going to be a positive experience for the person and you never know who that person is going to be, that you end up having a biological match with, right? And I was really glad that they sought out a genetic counselor to talk to throughout all of the process because of um, they became educated because they were interested in learning and actively sought out a genetic counselor? Not everybody will do that. And um so I'm glad to be available in for those who do decide to look further and think about things ahead of time.

It doesn't happen in every situation, but my hope is that moving forward, more people will understand what genetic counselors do and how we can help and that they will reach out because genetic counselors are just a fantastic resource to be navigators in this process, to help point out different resources and kind of go through someone's thought process with all this and genetic counseling does not necessarily mean genetic testing, it's more of an educational role. Exactly, right. So genetic testing and genetic counseling are intertwined, but they're also very independent things. And I'm glad that you pointed that out because I think a lot of people think you only see a genetic counselor if you already know you're going to have a test. Um but really genetic counselors are there throughout the process to help you decide if and when testings, right, Which kind of test you should have because there's a lot of differences from one genetic test to another, especially if you're looking at ancestry testing versus a medical grade genetic tests.

So genetic counselors are partners and I hope that more people will through podcasts through your podcast listening to the different episodes, understand all the different ways that genetic counselors can be helpful in the process and for people to know that there are non DNA related ways that they can search for lost biological family members? Can you share with a few of these are? Yes, certainly. So and we talk about this in in the book, Shannon and I do. We talk about different ways to try to reconnect with biological family before having to turn to DNA testing. So it's state by state whether a person who was adopted has access to all of that documents regarding their birth and their adoption or if some of that information is locked away and not allowed to them. So we provide we provide information about resources. There's a website called adoptee rights law. That's a website that's a great resource for people to understand what do they legally already have access to in terms of documents, it may only require a birth certificate or adoption records for you to identify who your biological family is.

You may not even have to turn to DNA testing. So that's one example. Um Sometimes talking with other people in the family or raising the topic with someone with one's adoptive parents. You can gather information and um sometimes internet searches are helpful. The book goes into more depth about the different ways to search with DNA being one of the tools out of the many. And we've talked a lot about this genealogy testing and looking for more information for that? How about for the medical information? Do you have any advice for adoptees or again the donor conceiving group um who are pursuing genetic testing for that medical information? Is there anything that they should be aware of when thinking about doing this? Yes. So there is different types of genetic analysis that is that are done based on whether we're looking specifically for ancestry markers or if we're using the information to match people versus looking for health information.

So there are lots of different tests on the market. Both the direct to consumer testing market and also the medical grade testing that you would have ordered in a medical clinic with the doctor or a genetic counselor. And I encourage people to learn more about the differences between them. The my book goes into a little bit about the differences between tests that are available for directly medical purposes versus consumer test which can have some medical significance. And some of the direct to consumer tests can have helpful information but has limits. And um I direct them to a genetic counseling network. So I'm part of gino medical which is a network of genetic counselors nationwide. And if I'm not able to help somebody through my private practice uh the network like genome medical they would be able to provide genetic counseling specifically for medical reasons. So I would direct adoptees to that as a resource as well.

And you're also involved with D. N. A quest which is an initiative for adoptees sponsored by my heritage. And we talked to um my heritage is Raffi Mendelssohn back on episode 80 about this, What outcomes have you seen from this initiative? And what's your role with D. N. A. Quest? So my my role is just to be on the advisory board as a volunteer. So I'm not affiliated with my heritage other than um you know when they were developing this this program to provide free DNA testing for adoptees and immediate relatives of people who were placed for adoption, they put together an advisory committee of people who had been working with adoptees in this area just to make sure that they were thinking of all of the different aspects to um to make the program really work for adoptees. And so I was part of the advisory committee as they were preparing to roll out their project right now they're in the process of interpreting all of the DNA results.

They provided a certain number of free DNA kits and all of those have been claimed by people who have applied to the program. And so right now they're analyzing the results here anytime in the next couple of months. Those results should start to come out and I imagine we'll see a lot more adoptive birth family reunifications from that program Which is just so awesome to hear that they were able to pull together this initiative and I believe it was like 15,000 kits that they sent out. Yes, that was their first goal and they have plans possibly to offer more DNA kits in the future. But they were just starting with this first set of results. That's awesome. We'll definitely keep everyone updated on the status of that if they're doing it again. Yeah, I think that these programs that provide low cost or free kits really helped lower the barriers for adoptees and birth families to find one another. And I'm always excited to see any program that can help lower barriers for a group that that could really benefit from testing certainly.

And do you have any other resources that you recommend for these communities? I developed the resources tab on my website, watershed DNA dot com and I'm building that up over time. So I have some links to other websites um I really like the podcast adoptees on. That's a great podcast I listen to. Yeah, I listened to that a lot. Just because I'm not personally involved in an adoption, it helps me understand the, helps me understand people I'm working with better. It's great because you can hear people's stories in different ways that they are involved in the community and different roles they have. So yeah, definitely recommend that podcast adoptees on. That's the name of it. Right. Yes. Yes. Um and people can go again to water said DNA dot com For lots of resources as she said, she has a tab on there for resources as well as a blog and you can schedule a session with her if that's something that you're looking into and want more personalized tailored um session with her.

Um So thanks so much for coming on the show and really sharing your expertise on genealogy, genetic testing, specifically for the adopted community. Thanks again for inviting me. I'm glad that you've highlighted this topic because I know it affects a lot of people's lives and it's a way that genetic counselors can help make a positive difference. And if you guys want to follow her on twitter, she's at G Cibrian and for more information on the show, you can go to DNA podcast dot com. All the links that we've mentioned, such as the adoptees rights law website, the DNA detectives facebook group that's all going to be on the blog post for this episode. So go to DNA podcast dot com will have all the links for you there. If you're on twitter, you can follow me at DNA podcast instagram. I'm at DNA radio and any questions for the two of us, you can send to info at DNA podcast dot com and I will forward those onto her if genetic counselor questions. So thanks for listening guys and join me next week to learn discover new advances in the world of genetics. D. N. A. We're all made of the same category.

Vienna

#103 Brianne Kirkpatrick on Adoptee Genetic Testing
#103 Brianne Kirkpatrick on Adoptee Genetic Testing
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