23andMe: The Benefits AND RISKS of Genetic Testing

Joe Luther  
Welcome to another episode of Friends in wonder, a place where we invite you to explore meaningful topics without judgment or limits,

Vince Kern  
brought to you by two lifelong friends sharing their insights.

Joe Luther  
I'm Joe Luther. 

Vince Kern  
And I'm Vince Kern. 

Joe Luther  
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Vince Kern  
Have you heard about the online services that will analyze your genetic data and give you back information about your health and family ancestry? Have you seen commercials or videos about happy stories of people being united with lost family members, or ones they didn't even know existed? Would you like to learn more about your family heritage and or your possible genetic predispositions for future health problems? Whether or not you've heard of this service, or I've even used it before, today's episode about using online genetic data services, takes a unique look at how the service works, provides interesting examples of some of the data you can expect to receive and digs deeper into some of the issues you may not have considered, such as what happens with your data afterwards? And what if the data you receive contains information, you might not want to know? Well, I'm familiar with ancestry.com. I'm not so familiar with 23. And me and Joe, you subscribe to that tool and have used it. Can you tell us a little bit about it?

Joe Luther  
Yeah, sure, I, I did this. I don't know, seven, eight years ago, at the request of my cardiologist. As part of my medical treatment. I know it's well documented from previous episodes that I have a heart condition. And one of the things that he wanted to do and help treat me is to analyze genetic data, because apparently, there's a lot of medical information that can be gained from your genetics. So he asked me to, to use the service. And like I said, seven, eight years ago, 23 and me was the one that he suggested. And from what I understand, and in looking into it, there are two services, as you said, there's, there's ancestry.com and 23andme. 23andme, maybe is a little bit more now I'm just generalizing here. But 23andme is more for the health data, they both do the same thing. But for our purposes. 23andme is more related to health data and more health data centric, whereas ancestry.com I think it's more about the story in the in the family tree and in the history and who you're related to. But they both do the same thing. So what I can tell you about is 23 and me because that's what I've used.

Vince Kern  
Well, when I first started 23 and me I thought it was like a dating site for for younger people or, or some type of a new blog. But you know how it got its name? Can you share that?

Joe Luther  
Oh, yeah. 23 and me is because there's 23 pairs of chromosomes in the human genome. I don't know if Did you know that? Vince, I did not know that. Well, apparently, that means we have 46 chromosomes. So that's doing the math, right? 23 pairs makes 46 chromosomes. Actually, funny enough, the last pair of chromosomes are the X and Y chromosomes. And that's what determines whether we're male or female. And that's the extent of my genetic expertise right there.

Vince Kern  
Oh, there you go. That's quite extensive, though, because I didn't know about the name. You know. So you were talking about how they do different things. My lovely wife, Sheila got into ancestry.com, many, many years ago, and she found a lot of ancestral history. She also did 23 in me, and she found out a lot further back of where her genetic origins came. So I'm considered I've done it actually signed up for 23andme. I haven't got my test kit yet. But you know, being a bit of a skeptic about modern technology, having first hand experience with things like Terms of Service, which we'll talk about in a little bit, I have some concerns about how the data is being used. And like I said, we'll talk about that a little bit more. But first, let's share with our listeners what, how 23andme actually works.

Joe Luther  
Right, Vince, you're talking about some information that I really hadn't considered when I signed up for this service, at my doctor's request, but we'll get into that in a little while. We'll talk about the benefits and the information that you can expect to get as well as some of the concerns that you might have about it. But really, let's talk about the process. It's really quite simple. No matter which service you use, you just Go to the site. And there's various levels of service that you can sign up for. And I think I paid around $200, I think you can get a service for half that price and maybe upgrade later, if you want to, you can also get a discount if you do multiple purchases. So like if you want to do it for you and your wife or family members, so there's different packages that you can buy. And then they send you a kit, no matter if you bought one, they'll send you one kit, if you bought multiple this and you have multiple. And all it is, is a little kit, where you take a swab of your saliva, and then put it in the package as they instruct and send it back to them. You know, you have to fill out a document for each of the kits, and so they know who belongs to what. And then suddenly you get notification online about the genetic information that they found from your sample.

Vince Kern  
In your case, it was both genetic and some medical, genetic information, right. And you mentioned to that you even got a you ordered a hardbound coffee table type book,

Joe Luther  
right. So then once once they get the, so basically, they're getting your genetic data, and then they have their huge database of what to do with and there's your own personal data, and what your genetic traits are, as well as all the fun kind of information that you can have, like you said in a book, you can also they have a number of portals online, in your online account that is constantly being updated that. So for instance, if if there's a new breakthrough on a medical technology, where they know how to determine this medical condition, genetically, they can give you up to date information because nothing changes with your genetic, the only thing that really changes is their ability to analyze information against your genetics.

Vince Kern  
So now you're getting into some of the concerns that I had, which is that this data is being collected. And this is all online data that's going into, as you said, a huge database. And I have had the pleasure, or, or the annoyance of writing Terms of Service for a few of the projects that I've been involved in. And I can tell you, it's nearly not as much fun as getting a book back telling you that your ancestors came from this country or that country. But I also have to tell you that when I was making a decision about whether to sign up or not, I did look at their terms of service and privacy statements. Now it's probably one of the few and I'm raising my hand here that I've ever read when signing up for something and and that topic of how how much we ignore Terms of Service for the things we sign up for us. It's a great fodder for another podcast No,

Joe Luther  
and kudos to you. Kudos to you for doing it because I didn't you know, I probably wasn't as concerned about data privacy seven, eight years ago, as we all are today. So good for you to do that.

Vince Kern  
Well, and kudos to 23. And me because they wrote their terms of service and privacy policies in a very human centered language. And I think that's really speaks volumes for them trying to explain this difficult topic to lay people. And I want to read something from their risks and considerations regarding 23andme services portion of their TOS is here to after How I shall refer to terms of service. And I'm just going to start by reading these this couple of quick paragraphs. And it says once you obtain your genetic information, the knowledge is irrevocable. And that means and this is me talking now that means that once you know what it is, you can't undo it in your head, right, genie back in the bottle. Exactly. And we're going to wonder more about that in a bit. And then it goes on to say you should not assume that any information provided to you whether now or as genetic research advances will be welcome or positive. Now, how unusual is that to hear in a terms of service, then it says some people feel a little anxious about getting genetic, genetic health results. And you may learn information about yourself that you do not anticipate. This is normal. If you feel very anxious, you should speak to your physician and genetic counselor prior to collecting your sample for testing. It says Additionally, you may discover things about yourself that trouble you and that you may not have the ability to control or change and they give an example. But to paraphrase it, you may find out some surprising facts related to your ancestry or that someone with Your genotype may have a higher than average chance of developing a specific condition or disease.

Joe Luther  
Right, right. Right, that is so good. And again, that's not the kind of information I was thinking about when I signed up for this service. But now, fast forward to today, there's all sorts of people going online, and connecting with this service and finding out information may be a little faster than they anticipated. But that's great. That's why even though you had to dig into the terms of services to get this, that's really what we want to talk about today. And that's this, what is the benefits? What are the what are some of the great data pieces that you get from this, or fun data pieces that you get formed from this? And then what are some of the more human concerns to consider before you step forward with it, and I think the first one, so there's really two benefits. There's, there's the ancestry information, and, and there's the health information. And and I think the fun one to talk about first is the ancestry information. And that's, that's kind of getting into your family tree. And I gotta tell you, Vince, both of them do a great job with it, because 23andme has given me some really fascinating information about my family tree, both on my online account, and in this book that I ordered. And so the book is something that I can bring out at family parties or, you know, get togethers and show people, you know, what my percentage of Neanderthal heritage is, or you know, how many pieces to the family tree are connected and all that kind of fun information. And then online, there's even more of that, that's kind of, you know, really colorful, and pictured, well, they do a real good job of, of connecting you to the rest of the family tree. So that's a lot of fun.

Vince Kern  
Yeah, that sounds that sounds like a fabulous evening with friends and family. And it seems to me that your results from 23, and me go back further based on genetics, then ancestry.com. Might, because ancestry.com is based on historical records. And my family had a professional history finder, I guess, is the best way of saying I know there's a word

Joe Luther  
for it. But it's unique as a genealogist I don't know if it's a Gene,

Vince Kern  
thank you. Thank you, I believe it probably is. But it deals with histories of records. And in my case, it was he had went back and found records back to the mid 1500s. Now, he did have three huge five inch thick binders of all sorts of information, and a printout of the family tree. But it printed out on huge paper about 24 inches wide spans about it spans about 20 feet. So like where am I going to put that? And how am I going to read

Joe Luther  
it like a scroll on your living room floor or something? Yeah, and I'm sure ancestry.com

Vince Kern  
has digital tools as well. And Joe, you showed me some of the digital assets that you have from 23. And me can you talk about that a little bit?

Joe Luther  
Yeah, it's kind of interesting. So really there. Like I said, there's two different tools that I have, or, or assets that I have, and one is the book. And the book is obviously stagnant. Because once you get the book, there's no updated information. But I'm lying, my family tree picture is different, and it's ever evolving. And it's really kind of cool, because you can see yourself, the way they set it up is is a picture of you in the middle of the family tree. And then all of the, you know, the traditional tentacles that you see from family trees. And wherever somebody in my family has signed up for 23. And me their name will be in the spy on the family tree. And wherever genetically, the site knows that something would exist, like a parent or a grandparent, whatever. There'll be a blank there if they hadn't signed up for the service. So I have like a great uncle and some cousins and then and then it goes up to a grandparent that I share with third cousins and whatnot. And it's very interesting. And that's always been updated. So it's it's kind of fascinating to see it in a visual like that kind of like what you were talking about with the hardcopy, you have this you have this kind of evolving document online, as well as the colorful one that you can you can bring out at a party with the books. But you know, what else is interesting events is they show you on a map where you genetically originate. And I don't know if people know this. I just wanted to read this one section that goes back to parently, the oldest haplogroup that we current humans have and here's what it says. The stories of all our paternal lines can be traced back over 275,000 years ago to Just one man, the common ancestor of haplogroup a current evidence suggests that he was one of 1000s of men who lived in eastern Africa at the time. However, this male line descendants passed down their Y chromosomes, generation after generation, and the lineages of all the other men died out. Over time, this lineage alone gave rise to all other haplogroups that exists today. So we all go back to one common, I guess, great, great, great, great, great, great grandfather from haplogroup a 275,000 years ago.

Vince Kern  
Well, leave it to you to go all the way back that far and giving us an anthropological education. I had heard that theory about everybody going back to one ancestor. But I never knew about the part where the haplogroup a, let's call him father hap, was part of 1000s of men, because I kept asking myself, well, how does one man, how did he get here? But apparently, so there were 1000s of men, and we can talk about the pre existence all for some other time. But I did not know that. And yeah, I

Joe Luther  
think I think what they're saying about the 1000s of others that lived at that time is not all those 1000s died at one time, it was just over a period of history, they eventually died out. It's just maybe it's a more anthropological way of saying we all go back to this one guy.

Vince Kern  
Yeah. Well, I was gonna ask you, if your Neanderthal ancestors that you discovered were the ones that discovered the magic mushrooms filled with psilocybin that are alleged to have caused the rapid expansion of the human brain about that era. But what you're telling me is that we've got the same ancestor. So I guess I gotta throw that BB out. But

Joe Luther  
well, that's a topic for another episode all together.

Vince Kern  
But seriously, as you mentioned, you start started your 23andme adventure, because you're interested in the medical predispositions that uncovers so tell us a little bit about that.

Joe Luther  
Right, right. There's, like I said, there's two benefits. There's the ancestry that we talked about. And then there's the health side. And I that was really interesting. He was specifically interested in some of my genetic tendencies. And it was, in fact, proven out that I am genetically confirmed to have hypercholesterolemia. And then there's a whole number of other health information that they give you. If you sign up for now, I gotta tell you, I'm not 100% Sure, if you can sign up for, for getting less of this data than others, because I don't know what the considerations are. Some people might not want it. But just to give you an idea, like I found, because I turned all the data on and I wanted to know as much as I could, medically, I found out that I have a genetic predisposition for macular degeneration. And so that's information that I can use. And I've talked to my eye doctor about it, and something that maybe I could treat prophylactically. I also found confirmation that, that I have a genetic predisposition for celiac disease. But apparently, there's multiple markers if you are truly celiac, and I only have one of them. But interestingly, I do have a bit of a gluten insensitivity, which goes along with celiac disease, and I just don't get, you know, as sick as other people do when I when I take in gluten, so I avoid it all together. But again, it's a genetic confirmation.

Vince Kern  
Well, that's all great medical information about you, Joe. But, and that's very specific medical information. Thank you for sharing that. It's pretty brave of you. But you are also telling me about some of the other interesting genetic traits, like the percentage of the likelihood to own a dog or drink coffee. And do you got it? You got to enlighten me about that, because I just find that fascinating. Well, some

Joe Luther  
of its marketing in his in the book, it's, it's, you know, they they have data from surveys, and they match it up with people who you're genetically connected to, but they also have really interesting kind of genetic traits or genetic predispositions that are kind of fun. And I actually I have it up on on my laptop right now. But, you know, there's, there's things like I'm less likely to have freckling, which is true, genetically less likely to have a flat feet, genetically more likely to have hazel eyes and that's true. All sorts of things like upper back hair and all of these various things that

Unknown Speaker  
you're more likely to have hair. So what's your I'm less likely less likely to have upper back hair.

Vince Kern  
No, you're less likely to have upper. Okay,

Joe Luther  
but you know, but there's an interesting one. There's one called misophonia and that is that is that I am more likely to be irritated by chewing sounds.

Vince Kern  
Mm hmm. I've actually been diagnosed with that. So I know what that's all about. And we're not going to go there, because that's an annoying disturbance.

Joe Luther  
Well, you know, so it's fun, it's fun facts, and I'm not sure what you want to do with it, that just gives you an idea of the kind of data that you can get medically, as well as some of the information that's a little more serious, like whether you're more likely to be susceptible to type two diabetes,

Vince Kern  
right? Right, those things can be really important. And those are a lot of benefits. So we've talked a lot about great benefits. And obviously, this is going to continue to evolve over time. But there's also these personal considerations that you need to balance those against. Those are some of my concerns. For instance, I've heard stories from people, whether they've used these services or not, who have found out about distant relatives. For instance, I have a friend who was an only child, but later in life, found out that after his father left, the family had 12 other children. So he had 12, half brothers and sisters out there. And we spoke at length about whether or not he wanted to meet them or not. So there's a big difference, especially with today's technology, and how we use it, you know, rifling through Instagram and looking at pictures and, and how our fast our brain works of knowing that there's somebody out there, and then meeting them in person, and actually meeting them. Two different things, right. So how much emotional energy is involved in that, it could be the greatest thing ever that happened to you. It could also probably be not so good,

Joe Luther  
right. And I think that's what when you mentioned it in the terms of service, I think that's a real good kind of warning or consideration to give to people before they go ahead and use this. And before they opt into the kinds of data that they want to get or that they want to provide to others who are using the service. And you know, Vince, I It's I have an anecdotal story too. I have a friend who are age whose wife after both her parents died, and nice old age, did this service and found out that she was adopted, she had no idea that she was not the biological, biological child and shoved her in her parents. Her parents were gone, she ended up calling a great, you know, one of her parents brothers, and ask them if it was true, or asked him if it was true. And he started crying on the phone said, Yeah, we were, we were sworn to secrecy, because you came as a baby, and they just never wanted you to feel different. And so that's why we never told you. But it rocked her world like she was not ready to know that and was never able to talk to her parents about it. So it's one of those things that you really need to consider before you again, before you let the genie out of the bottle.

Vince Kern  
Well, and here's another thing to consider. 23andme is very definitive in how it uses information. And I suggest anybody who's interested in doing this, take a look at their website, because it's all spelled out. But one of them they go to great lengths to say they did not provide information to law enforcement agencies unless certain conditions apply. And, you know, you have to take what you hear on the internet with a grain of salt, especially for me, I tic tac, to me is a place where a lot of people just want viral experiences. And, you know, I've seen stories there that were sent to me about a woman who said that the police came to her house and said she was the linchpin in a murder case, and they wanted to get her DNA. Now, that's another unintended consequence that that, you know, whether if that's true or not, I don't know. But do some research on the on the controls of the privacy concerns, they do have a robust back end for setting your preferences, and whether or not you're willing to participate in heavier risks results, which by the way, are de identified, which means that anybody using them in research does not know who you are. And Joe, you said you had all your a lot of that turned on now, can you talk a little bit about why you for instance, allow your data to go into research studies?

Joe Luther  
Well, I guess because I've been the beneficiary of modern medicine. So I thought the the right thing to do is to give them data back so I've I've been involved in a number of studies where I answer surveys about my medical condition or, or various questions, whatever they whatever they provide, and and for a while there, I was kind of one of their model participants because I would do a lot of them. But you can sign up for as much or as little of this as you want to. And the point you made about whether the police can get access to this that resonates with me, though, Vince because even though they may or may not be sharing this information with law enforcement or government today, who knows like right I mean, back years ago, there were people believe that their data and their cell phones was secure. But now with a subpoena, who knows? Right? And I know Apple prides itself in keeping your data secure, but who knows, right? Who knows in the future? And I think that is a consideration to keep in mind, because there are people who think that, you know, you don't want your genetic data out there in the hands of third parties. But I have, it's another consideration. And the one other consideration that I can just give anecdotally is that when you get some of this medical information, if you're more like a hypochondriac, or, or somebody who worries more than the next person, you might want to consider whether you want some of this information, like me with a macular degeneration or, or other information about whether you're less likely to develop Type Two Diabetes, if you get that information, don't misuse it and think that, oh, that means I can eat as much sugar as I want to. Because that's not what the data is saying. So I think you have to be careful with how you get this information, whether you want it and whether it impacts you in a negative way. Well, anyhow, that kind of gives a deep dive into some of the considerations before using this service. But Vince, you've already decided to do it. And some of our listeners are probably wondering whether they want to do it or not. What do you think of as any of this information or discussion changed your mind in any way?

Vince Kern  
I did make the decision to sign up for it. Now, I didn't sign up for the medical part of the service, just the ancestral genetic history part of it. But I really think that at this point, I signed up for it because my curiosity about my ancestry just is becoming more and more piqued since I've learned some of the stories of my ancestors from ancestry.com. And weighing the balance in the benefits for me, I decided to sign up. But I do say it's a personal choice. I think it boils down to your desire, your considerations about your information, and all of that, but I decided to do it because I'm interested to find out, you know, where my ancestry leads back and and how much Neanderthal blood I have.

Joe Luther  
Well, yeah, then I can't wait to find out what your percentage of Neanderthal is. I'm going to keep mine a secret. But yeah, anyhow, we hope this gives more information to our listeners about this service and some of the things that they might not have considered. And thanks for wandering with us.