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On this show. We explore genetics impact on our health through conversations with leaders in genetics. These are experts like fellow genetic counselors, researchers, doctors and patient advocates. This episode is part of our ongoing direct consumer genetic testing series. I'm joined by the award winning journalist, Libby Copeland Libby who writes about culture, science and human behavior is the author of a new book, The Lost Family, How DNA testing is upending who we are, which explores the personal familial and ethical implications of recreational DNA testing. Copeland was a reporter and editor at the Washington Post for 11 years and has a media fellow and guest lecturer and has made numerous appearances on television and radio. Welcome to the show, Libby Copeland, thank you so much for coming on to discuss law enforcement's use of direct consumer genetic testing today. Oh, thank you so much for having me. I'm thrilled to be here. And I have to say before we launch into the interview, I just loved the book, The Lost Family for people that haven't read it yet. It was just it's such an easy read and I learned so much.

I mean someone that's been in genetics for a few years now. I was like, oh this will probably be information I've heard before, but you phrase it in such an easy way that you're intertwining all of these people's stories to explore so much indirect consumer genetic testing. We're just talking about law enforcement today, but it was such a pleasure to read. And I had my highlighter out and just so many areas that were so interesting and so many people that you talk to to incorporate so much information. Oh, thank you. I mean, it was absolutely an adventure to report and write this book. I found it completely fascinating. I think that um this topic touches on so many, so many really important human themes that I just, you know, it was it was just absolutely thrilled to be able to report and write this book. I think that's a really good comment that it really does touch on so many areas of like the human experience and from families to, you know, we're going to get into law enforcement to health side ancestry. I mean there's so many different areas of direct consumer that that's why that there's the series on the show, but there's just so much to explore and analyze and reflect on and that really comes through in the book.

Yeah, I mean I think that a lot of the themes that DNA testing brings to the fore are important to all of us. Um whether or not we've tested because they have to do with questions about um, identity and self and family and love and privacy and things that um, you know, even those of us who never spit into a vial. Um, and certainly those of us who do, um, we've been thinking about these questions on our lives. Actually, there's basically essential human questions. And so I think that the themes that I explore in the last family are are questions that people have thought about actually for centuries. Um, and um, DNA testing just gives us a new and often more dramatic way. Um, a lens of looking at them. It's such a good way of putting it. And one thing you kind of teased in the rest of our interview is that you don't necessarily have to spit and send it off to one of these companies to be affected by this and I think we'll see that I thought we could set the scene with a groundbreaking study in 2013 that you talk about um in your book where a team was able to fully identify men who had anonymously donated DNA samples for research?

Can you take us through like what this study, how they went about doing this and what were the implications of this study at the time? It wasn't really groundbreaking, but a couple years after it became. So. Yes. So um you need garlic and a team of other scientists. Um We're very interested in exploring how um research genomes that had been donated and kept anonymous. In other words, the people who donated them had not been identified, whether they could be potentially be identified. And Ehrlich was interested in this because he wanted to know what were the privacy implications and possible complications for people who had selflessly donated their genomes for research. Uh and so what they were able to find was that they were able to take five of these research genomes and actually figure out who they belonged to. And they were able to do this by taking the information that was publicly available, which was the the genetic data, but also um some limited non identifying information.

And put it into a kind of public data base um that looked at um Y. DNA. So D. N. A. On the Y. Chromosome. Um and this was a sort of a public database that genealogists were using that they were researching the commonalities between surnames and the Y. Chromosome. So a man typically gets passed down to things from his father. He gets his father's why chromosome and he gets his last name, not always his last name, but typically, and those commonalities have for a long time allowed genealogists to research their own family trees. So using this information in this public database, Ehrlich and his colleagues were able to identify five of these anonymous research genomes and then many members of their family. So they were able to ultimately identify close to 50 people. And this was actually at the time, um as early described it to me kind of a risky move. Um he was um upsetting some people in his world by showing the limitations of privacy when it came to how you can combine, you know, the internet and genetic data.

But it was really very prescient. He was really seeing into the future. And he was really predicting in many ways what would happen just a few years later, um with the capture of the alleged golden state killer. Yeah. And that it really set the stage for, okay, let's look at genetic privacy and like where are we at with this? How can you discover other people that, you know, DNA how much can it really be de identified? That's kind of a term that we use to say, okay, this sample is no longer connected with a person that you can kind of draw back to. But how accurate is that can we be doing this? And with his study he showed that there are ways to do this with that. Why D. N. A. Which I wanted to kind of uh side note for a minute just to talk about why DNA. Because people may say what the heck is why D. N. A. And when people are doing direct consumer tests such as like ancestry testing, Autism, all DNA is usually what they're looking at primarily, which is your chromosomes one through 22. But there are sex chromosomes Xy for males, extra females.

So only men typically when we're looking at biological sex have the Y chromosome is, as you said, it's passed down from father to son throughout generations. And so it can help with ancestry testing. But how many companies have this option to look at this? Why chromosome information as opposed to just the autism All information. Right. It's relatively unusual. It's more of a niche categories. So there's four major DNA testing companies. When it comes to recreational DNA testing, ancestry, D. N. A. Is the big 1 23 and me is also very big just behind them. Um There's my heritage and there's family tree DNA, which is the smallest and also the oldest. It was founded in 2000 just about exactly 20 years ago, it sent out its first kits for people to test. So um family tree DNA is the only one that offers um why D. N. A. And mitochondrial D. N. A. Um as sort of stand alone um testing. And they're typically much less useful for genealogical purposes.

But there are cases where why DNA can be helpful particularly uh you know when you combine it with um with the surname correlation, the correlation between the Y. Chromosome and the surname. There have been cases that have been solved or genealogists have solved cases in their own family trees um By using this. And so with why D. N. A. It also links back to law enforcement using this in the past. Um How did that work with law enforcement using this? Yeah. So if you look at the Golden state killer case for instance um I know that um law enforcement was trying to use DNA to tackle the problem of who this um homicide als you know rapist and serial killer who he was at least as far back as 2011 using Y. D. N. A. There is a uh forensic genealogist I guess you would call her. Um Colleen Fitzpatrick who told me that she'd been working with um investigators as far back as 2011 using um Why D.

N. A. And there's particular instances back in 2017 for instance. Um paul holes who was an investigator on the case. Um He had been experimenting with trying to use D. N. A. To solve this case for quite some time. Um And he told me about trying to use Y. DNA back in 2017. Um And it did not yield um what they were able to achieve just about a year later with autism all DNA. Which really is so incredibly rich um That it was um you know it was remarkable in terms of what they could understand from not even a very large pool of people. Um When they ultimately went that route, it's interesting with direct consumer databases that you don't just need, oh your mother, your brother is in the database as far as, I don't know like some cousins maybe first cousin, second cousin can lead back to the person that law enforcement is trying to find. I've mentioned the golden state killer case a few times on the show but never really dived into exactly how the sequence of events um of being able to identify him.

How were they able to use these databases? Where did they start after the why DNA wasn't really leading to the killer. So they took the crime scene D. N. A. And they put that genetic information from the crime scene DNA. Into something called Gedmatch. So Jed match is basically um a repository for people who have tested one of the major recreational DNA testing companies. They download their information and then uploaded to Gedmatch so that they can compare across different platforms. So across different databases and also use other tools to understand. So it's really this very um it's a site for hobbyists, people who are very very into genetic genealogy and are typically uploading to better understand their family history and make comparisons that way. Um So what police did was they used basically like an undercover profile. So they created a profile um for this crime scene DNA. And then they looked for relatives.

And the database at the time was so small that they were really looking at More distant 3rd and 4th cousins. And what they were doing was they were using techniques that have been used by genetic genealogists going back to about 2010. But they were using them um in this case in a new way they were using them to solve a crime. And they were going back um looking for a most recent common ancestor among those um cousins. And then they were tracing forward back in time using a technique that sometimes referred to as reverse genealogy to look for modern day descendants who might not be in the database. And you know in fact are not in that database but um fit the profile in terms of demographics and location. And also that their D. N. A. Um fits in the right spot in the family tree. And that is how they were able to identify the person that they figured was a person of interest in the case. And then they needed to actually confirm it by picking up um you know typically in a case like this it might be like a tissue or straw or something that has the culprit the suspected culprits.

DNA. On it that's been discarded in a public place. And then they compare that um to the to the crime scene sample and they look for a match. And that's what happened with the case of the golden state killer. There's so many elements there of it's not just testing oh this person came up and that's a match. Go arrest them. You're looking at finding a most common ancestor. And looking at, as you said those demographics and so many layers of information To pull this together. But without the genetic testing in these databases like um G. D. match like it's not able to really be done. Like this case was open for what 50 years around there. Yeah I think it was like 44 years something like that. Um and I think what you're pointing to is something very important. This is not just something that DNA alone can accomplish. You also have to be somebody who understands how to build trees. And so you need really somebody who's well versed in genealogy um and can do genetic genealogy and can use the power of the internet.

You're really pulling together many different technological forces. So it's not just the D. N. A. It's also um social media. It's also the wealth of information that's available on the internet. It's the extent to which our lives are now lived publicly online combined with the D. N. A. Combined with the share genetic segments um that I might share with my genetic can that makes it possible for investigators to find someone who who never themselves spit into a vial. And it's interesting because as you said, all of these different areas, it's really all of these different data points and bases because your social media presence and the demographic information the police may have and the database is that they're all pulling together to be able to find this information. And that's starting to be where we're going today and how law enforcement is able to use this. But before we get to exactly how this has now changed because the Golden State killer has been a couple years now since that's happened.

How did their databases work before? There's something called Codus, I've heard of that law enforcement still used today but how how is how was it before the Golden State killer to really have a juxtaposition of what we're doing today. Right. So in the past um investigators were solely reliant if they wanted to use D. N. A. On. On kind of a network of local state and federal databases that are colloquially only known as CODIS as you say. And um the type of DNA that's used within codas is different from the genotyping approach that the recreational DNA testing companies are using. And what that means is that um they are really only able to find. Um So you're really looking to see if the person you're searching for is already in the database. So if they're um like you've been arrested or convicted felon, they may have had their DNA taken and their genetic information placed in Dakotas in some states, it's possible to do familial searching.

But the type of DNA that's used in CODIS is only good for predicting very close relationships like like parent and child or like siblings. So what's known as long range familial searching, which is looking for 3rd 4th cousins, that's simply not possible within codas. So basically you're in a situation where you're looking for um you say a killer in this instance, but if that um if that criminal's DNA isn't already encoded or someone very closely related to them, you're not going to be able to find anything. And You know, just to give you evidence of this. I mean the the Golden State Killer's DNA has been in Coda since I think 2001. And that system, as I understand, it continually runs searches for matches. And because because he was not in there because the man who would later be arrested for these crimes was not in there, they could not find a match nor was there like a sibling or a parent. So um there's there's certainly been many, many thousands of cases solved through CODIS.

But it just doesn't have um it doesn't have the power of um of the kind of DNA technology that's being used in in recreational DNA databases in the public ones. Speaking of genetic databases, I wanted to let you listeners know about Gino bank. Gino bank is the first anonymous DNA storage and sharing platform that is completely controlled by you with Blockchain technology. Other companies as we're talking about on this episode with Libby copeland share their data and it's not locked down. Here's the really cool aspect about Gino bank. You can choose who you are sharing your DNA with. Including researchers. That's right. You can be a partner in research by choosing specific institutions who can use your D. N. A. In their research projects. Gino bank is like a matchmaker between researchers and people like you who want to contribute their DNA towards scientific advancements. You can even get paid for your valuable D. N. A. You also have the control to decide how long researchers have access to your genetic information. Keep an eye on gino bank as they are launching this fall.

Get a sneak peek at gino bank dot Io there. You can sign up to be a part of their beta program and learn more. Again, that's gino bank dot Io to join the genomic revolution in the book. You mentioned that Cody's uses what's known as str DNA testing. So looking at short tandem repeats. So these are when you have kind of two letters that are repeating and depending on how many times they repeat in a person. That's how it's looked at. So it's very limited in terms of what genetic information it's looking at. But that also it doesn't really include any health information. It's more of an identifier of people. Whereas with some of these databases in what the information that they may have can include health information. I mean that's often what people are looking at when they're spitting into these tubes and sending them off to companies as health information along with the ancestry. But now that we have these large databases with ancestors you mentioned being the largest. Have there been other criminals caught through these databases that are from the direct consumer companies.

So not the codus and other ones that the police officers were using before, but now ones that are company owned. Right? So um so the major databases are closed off to police. They don't permit police to do these kind of searches within the database is so major databases, ancestry generally refuses law enforcement requests 23 and me and my heritage, they could be subpoenaed. Um But they but at this point, I don't know of any successful law enforcement motions against any of these companies to gather genetic information. So the only um companies generally speaking or the major companies that law enforcement turns to our job match, which was always envisioned as kind of a public or quasi public forum. Um And then there is one company called family tree DNA, which I mentioned earlier, which is the oldest um D. N. A. Recreational DNA testing company. And um they have um decided to allow law enforcement to also access their database and use, you know, try to attempt to solve crimes through their database.

So between jed match and family tree DNA, those are the ones that are accessible for law enforcement to use at this time. But there's the potential that they could get what you said was subpoena in order to access, but that hasn't happened yet, but it could in the future they've been um they've been saying that they would fight them. Um and there have been some sort of legal tests. So it's an open question. I mean, there are people who say yes, this could be a concern in the future. So are there any laws of protections to prevent law enforcement from then being able to access these databases? I mean right now, companies are saying, no, we're not allowing you to but are there any actual laws to do this or any efforts to add laws? So at the moment, it seems to be a question of right, private industry and what they, what kind of limits they want to set. Um and you see this kind of play out interestingly with Family tree DNA because that is an example of a company that sort of um its founders made decisions to permit ultimately to permit the FBI to have access to the database for this purpose.

Um and and that is interesting and important to private privacy experts because it essentially puts um business ceos in the position of making decisions about the privacy of potentially millions of consumers, D. N. A. And with these companies, they have, what are called like opt in or opt out policies. How has this changed since Golden state killer case and like to now, what are most of the policies? Right, so Jenn match currently has a policy that you are automatically opted out, but you can opt into law enforcement use of your genetic information. Now it didn't used to be that way back in 2018 after the Golden State Killer was caught gen match founders did a lot of soul searching and ultimately decided that this was a good use and allowed um allowed this use and kind of notified all their users so that users could remove their genetic information if they didn't like their genetic information being used to solve homicides and sexual assaults.

And then along the way, the founders of Gedmatch decided to make an exception for particularly egregious case that was neither homicide nor a sexual assault. And in the kind of privacy outcry that followed among genetic, some genetic genealogist, but a very vocal group of genetic genealogist who um used Gedmatch and didn't didn't like the idea that an exception has been made. Um the company changed its policy and they made it so that you had to actively opt into um your DNA being used for um for particularly egregious crimes, but a slightly broader suite of crimes, Family tree DNA. Um, I believe last time I checked they were using sort of the opposite approach. So you're automatically opted in unless you choose to opt out. So it really depends on the company and consumers should be looking at company policies to see how there is, there is a set up, What would you say for people that themselves haven't yet done a direct consumer task but are considering doing one, what should they think about before making that decision?

So I mean at the moment if you're testing at one of the bigger companies, um there have not been law enforcement implications for you unless you decided to go ahead and download your information and upload it to jet match for instance and then opt into law enforcement searching. So as far as law enforcement implications thus far, that has not been an issue. But there's certainly other um concerns that I've heard voiced um concerning the possibility of for instance in future, a company we bought by another company and maybe their privacy policies being different or your genetic information being breached or the possibility of genetic discrimination through an insurance company in the future. Um most of these are hypotheticals, but I think the thing is that we kind of don't know how our genetic information could be used in the future. And so that is a concern to a lot of people. Um and I know genetic genealogists will say um you know, if someone's hesitating about DNA testing, like it's not your role to kind of persuade them because you don't know what their hesitation is about.

Um and you don't know how that um concern could manifest in the future. And I think, you know, one of the biggest issues that I saw as I was reporting my book um was um concerns about family secrets coming out into the open and um a lot of the reason why people may hesitate now um does have to do with that question of, am I opening a Pandora's box, The vast majority of people who test are not going to find that there is something, you know, sort of huge and shocking and disruptive in their family tree, and they're going to have um from what I understand from my interviews often um kind of a deepening of their understanding of their own genetic ancestry and their family history. But there is a significant minority of people who do discover something kind of um kind of shocking, and that causes them to question their own identity and they're sort of place in their family. And that can be um that can be a truly sort of seismic revelation and that is a kind of a privacy concern that a lot of people do think about too, it's advantageous to take a moment before doing these tests and thinking through what the possibilities are and how it can affect not just yourself, but other people in the family and in ways that may not be happening right now, as you said of just how the future could be of companies buying out other companies and laws changing and it will be interesting to see how things do progress with this.

I mean direct consumers have been very interesting and genetics for years and I imagine years to come. One last question before we close out the show how much of the american population could be identified from these direct to consumer databases. We've talked about being able to identify someone through a second or third cousin, but how many people in America right now could be identified through these databases even if they're not in their themselves. Sure, well if you're talking about this for law enforcement purposes, it's a different answer than if you're talking about it. If you were to for instance, um uh spit into a vial through ancestry for example. So the work that Yaniv Erlich did Found that you would need approximately three million people in a database in order for 99% of the White European population in the United States to be identifiable. Now there's not yet three million people as far as I know in the two databases that make up the pool of people that law enforcement has access to.

If they're doing that kind of um searching. But as far as um the recreational DNA testing pool as a whole, there's at least I think 30 million people. Um if you look at ancestry D. N. A. 23 me, my heritage and family tree DNA combined. So you've many times over exceeded that um that kind of number that's needed to find. The vast majority of people have at least what european descent which was the population that are like was looking at and that is most commonly represented in these databases. And I imagine these numbers will just continue to increase with databases growing. Maybe not at the same rate they were but that they're going to continue to grow. And so this is an area that's very interesting to continue following and I want to thank you so much for coming on the show and exploring these topics with me. It's so interesting to see just all the areas that direct consumers can be implicating and that people can learn so much more in your book, The Lost Family highly recommend it.

And for people that are regular listeners to this show, you're going to recognize a couple names including Brianne kirkpatrick that's been on the show a couple times. So definitely recommend the book and thank you so much for coming on the show. Thank you so much for the fascinating conversation. I've really enjoyed it. We're on a roll with another giveaway as part of our ongoing direct consumer genetic testing series. You can enter to win a copy of Libby Copeland's the lost family by heading over to our social media. Just search DNA today on twitter facebook and instagram, if you want, the direct handles, twitter and facebook is at DNA podcast. Whereas instagram's at DNA radio, you can look for the post. It's a picture of me holding a copy of the book and there's more details on there on how to enter. I swear it's very easy. The other giveaway we're doing right now is a mentoring session with myself about getting into genetic counseling programs. This is going to be a one hour zoom call and we're going to talk about your resume, your essay, and how to improve your application to get into genetic counseling programs. So you can also head over to our social media to enter that one portion of it is sending in a review on apple podcasts or if you don't have access to apple podcast.

Another podcast where you can leave a review for the show and as a bonus when you follow us, you're not going to miss any other giveaways that are coming up that way. If you're behind on episodes, you're still going to have a chance to enter our giveaways and if you want to order your copy right now of Libby Copeland's the Lost family. Head over to our website, Libby Copeland dot com and be sure to give her a follow on twitter at Libby Copeland. She makes it easy. Head over to DNA podcast dot com. If you would like to listen to over 125 episodes of the show. Now, all of them are available on the podcast app because usually the copy of 100. So we've got more than that. Head over DNA podcast dot com. You can also search DNA today in your podcast app. If you happen to be listening to this on the radio, be sure to subscribe any questions you have for myself. For Libby any other previous guest, you have an idea for the show. You just want to shout out email in in fluid DNA podcast dot com. Before ending the show, I wanted to remind you about the sponsor of this DTC series. Picture genetics with their exclusive 25% discount for you as a DNA today listener picture genetics is different from a traditional direct consumer test because it's clinical grade testing with every case reviewed by a health care provider.

Results are focused on health with medically actionable and useful information for you and your family actually did a couple of their kits including their picture parenting one. Here's how it worked. I sent off my tube of spit to their lab who sequenced a bunch of jeans. This basically means they've read through each gene to see if there was a mutation or pathogenic variants as we genetic counselors call them. Then a physician or genetic counselor looked at my results and created a beautifully easy to read report, informing me about my carrier results. Here's my favorite part. There also is genetic counseling offered so you can speak with a genetic counselor about your results. So there's no confusion. Order your own kid at picture genetics dot com and use code DNA today for 25% off and free shipping again, that's picture genetics dot com. Get actionable genetic insights today to benefit your family of tomorrow. Be sure to check out Gino bank as I mentioned before. They are the first anonymous DNA storage and sharing platform. Gino Bank allows you to participate in the genomic revolution with maximize privacy through Blockchain networks. To keep track of all the datasets and genomic reports without exposing your personal data and your family's data.

Gino bank creates a way for you to decide who has access to your genetic information. The aspect I'm most intrigued by is how you can take part in research to further science by choosing specific institutions and even projects to contribute your DNA. To check it out. That's at gino bank dot Io again, Gino bank dot io. Thanks for listening and join us next time to discover new advances in the world of genetics. D N. A. We're all made of the same capital Vienna. We're all made of