Many people now submit their DNA to online databases for health and ancestry discoveries, but how do these databases work? And should we own our DNA information?

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Here’s a transcript of our conversation:

Ronni: Hey, Brittany.

Brittany: Hi, Ronni.

Ronni: So, you don’t have to answer this, you might not want to answer this, but do you know those online DNA databases like 23 Me or Family Tree, DND that you have to? Yeah, where you can send in your saliva sample and they’ll tell you all about your ancestry. Have you ever done one of them again? You don’t have to answer.

Brittany: I’m an open book, so it’s funny. I had ordered one and then I never opened it, and years had gone by and then I took it to my office. I grossed out by spit and you have to spit.

Ronni: Yeah, you had to spit in the bile.

Brittany: Grossed me out, guys. I was like, ah, it’s so disgusting. So, I brought it to my office on March 1st, 2020, and I was going to do it at work, and then the pandemic happened and my office shut down, and I did not go back to my office until when I quit. So, I went back to get my stuff. But the problem is, once you open the kit, you only have a certain amount of days before it actually expires. So, I wasn’t going to spend another $200 to get a new one, so I never did. And I’m kind of happy about that because as much as I think they’re really cool and all my siblings have ’em, so, I kind of feel like I know generally speaking, a little bit of the results, even though everybody’s different. So, I’m mixed about it. I kind of really want to know, but I also, it kind of freaks me out a little bit, which I have a feeling you’re going to talk about. So, I won’t get into my fears.

Ronni: No, but I like that story because I think it demonstrates, at least for me, that originally, when this first idea came out, it was met with a lot more enthusiasm, and then later it was like there’s more fears about the privacy of it. And so it’s great in a way that you were able to have time to think about some of those fears instead of just jumping into it at the beginning, unlike what I did. So, I have done one of the DNA databases, but I was kind of an early adopter. So, maybe a year ago, a year, a decade ago, 10 years ago or something, I thought, oh, this looks cool. I can learn about my health. I can learn if I have any random ancestors out there as some relatives that I never knew about. So I submitted, yes, I had to spit into a vial.

Brittany: Wait, so which one did you do?

Ronni: I did 23 And Me at the time, that was.

Brittany: The one was going to do.

Ronni: Okay, yeah, it was the biggest one. I think it had the best sale or something, but I wasn’t thinking at all about the privacy aspect of it. I just thought, oh, this is cool. And it’s interesting because a couple of years later, I was chatting with a mom friend at preschool pickup or something, and I mentioned something about doing 23 and Me, and she said something along the lines of, yeah, I don’t know if I would ever want to do that. I’m concerned about the privacy of our DNA. And until she had said that, I had never really thought about it. And I was like, oh, because I don’t think to be concerned about. And so in hindsight, I look back on that and I think, oh, well, I probably should have thought a little bit more, but.

Brittany: It’s scary. And forgive me if you’re going to talk about this, and I know we think it’s really good to solve crimes, and it is, right? I mean, some crimes, some crimes are silly and the government makes ’em up, but if somebody murders somebody, you want that person off the street. But what scares me is they’ve been able to solve murders from people who didn’t even do their 23 and Me.

Ronni: Yeah, actually, I was going to talk about that.

Brittany: I’ll let you talk about it. Yeah.

Ronni: But since you brought it up, let’s talk about it.

Brittany: It’s like a mystery, but creepy on two in two fronts.

Ronni: Yeah. So, actually, it was a recent case. It was a pretty big case. It was a murder case where it was solved by, they had DNA, the police had DNA, and so they ran it in a database and they didn’t even find the murderer. They found a relative of him. And through that relative, they were able to then piece who it was. So, I mean, it’s just really interesting how even if an individual doesn’t give consent to be in a database, they can still be tracked through it. And like you said, there are some really good things about this. I mean, everyone would probably say that to be able to find a murderer or someone who’s done something atrocious using DNA testing would be a good thing. And in fact, actually, kind of on the flip side of that, another great thing about DNA testing now and DNA databases being able to find people through DNA is there’s this organization called the Innocence Project. Have you heard of them?

Brittany: Yes, I’ve known them very well. Yes.

Ronni: So, for any listeners, the Innocence Project, what they do is, so, prisoners who were convicted of crimes, often they’re on death row and they’re convicted of very serious crimes. Before the advent of DNA testing, the Innocence Project has been able to use DNA testing to prove.

Brittany: That they exonerate, right? Oh, that’s a big word. But to get people off of false things, they didn’t really commit.

Ronni: That they were actually innocent.

Brittany: That’s a really good point. I didn’t think about that.

Ronni: Yeah. So, DNA can do a lot of really amazing things to be able to do this or to be able to test for DNA, but it still brings us back to this question, though. It’s a little bit of a double-edged sword. It can be used for good, but at what point should we be worried about privacy? I think before COVID, I was much more trusting of the government. We’ve already talked about my story and how I’ve changed a lot and questioned a lot of things. But I used to be of the mindset, that if you don’t have anything to hide, why does it matter? Why do you need privacy? But I think that during COVID, it showed me, especially things like for the vaccinations, it became, again, we always say, if you don’t have anything to hide, why does it matter? Well, who determines what should be hidden? For a lot of people who maybe didn’t want to take the COVID vaccine, but they were feeling as though they were being judged for that, I could very much see how something like this type of medical privacy and being able to say, oh, well you shouldn’t be able to be private for that. Anyway, I’m a little bit more trepidatious about all of this.

Brittany: Explain what trepidatious means. That’s a good word, but it’s a big word. So, explain that one.

Ronni: Thanks, I tend to use big words sometimes and I forget. So, trepidacious is a great word. I’m going to teach all of you and then you guys can use this word. It’s fun to say trepidacious. It basically means cautious, a little bit unsure. You are entering into it slowly. So, when I say trepidacious, I’m a little bit, I’m not sure how I feel about this. Let me think about it.

Brittany: So, maybe kind of cautious or questioning. Right?

Ronni: Yeah, Cautious and questioning. So, going back to the DNA, testing and ethical questions to ask about it, but to talk about the different companies, I did a little research into that. Of all the DNA companies, only some of them will work with police authorities and some won’t require you to either opt into being searched by the police. Some you’re automatically opted in and you have to opt out. So, if any of you guys are listening, mostly the parents, because they don’t really think any kids are going to be in the database yet unless their parents have signed ’em up for it. And you don’t want to be part of something like this. You might want to check the company that you use and make sure that you have opted out. But what’s also interesting is, so, I’m actually, I told you I was part of 23 and me and 23 and me, they will not release information to authorities unless they have been court ordered to. So, 23 and Me is fairly safe, but if you’re with another company, they will work with ’em. However, there’s another, by the way, is this okay then I’m going off on all the different companies.

Brittany: I think you’re fine. I was going to say, I think that’s fine.

Ronni: So, a lot of people who, if they do something through Ancestry or Family Tree or 23 and Me or any of the other ones, they will then go and upload their DNA information to this other website that’s called GED Match. And I don’t remember what GED stands for, but it’s this huge database that takes DNA results from any place you get them. And so it’s kind of like the main hub if you’re searching for ancestors or things like that. But the problem is, is that I’ve discovered that GED Match is the main place that the police go when they are searching. So I am part of the GED match. So even though I felt safer knowing I was through 23 and me, I suddenly in my research have discovered, oh, I need to make sure I’m opted out of the GED match. Just a little bit of information out there in case anyone is researching DNA companies.

Brittany: Well, in Utah is where Ancestry is.

Ronni: Oh, is it based here?

Brittany: Yeah. Yes, it’s based in Utah.

Ronni: So, yeah, all in all, I’m not necessarily against my DNA being shared. I think that there can be some good that comes out of it, but I do tend to be trepidatious and anytime I feel as though it’s possible that my privacy is being violated. So, I just think it’s got some ethical questions in it for us to think about.

Brittany: And I think the biggest thing, and this goes with the catching murders and stuff is that it’s people who didn’t even take the test. And I talk about consent a lot, and that’s what really gets me. It’s like, okay, these people didn’t sign up for this, but they’re still able to track the DNA. Now, in this case, those people are already in a criminal database. So, it’s a little different either way. It’s just a little creepy.

Ronni: No, not necessarily. Not anymore. Really. That’s what I’m saying. It depends on what the company is. So, if you’re at a company, say 23, and I and you only have your stuff there, well, 23 and I state, I mean, I dunno if they follow this, but they state that they do not give out any information unless it’s been court ordered. They have a subpoena. Subpoena means court ordered. But other companies like GED Match, do work with it. And you don’t even have to opt into being searched, you just being part of it. As long as the police make their official police report requests, they can search. So, if it’s something people care about, they might want to look into it for themselves.

Brittany: A good point, I mean, as in everything, right? Look into it yourself. I think we always talk about that. Well, this is really interesting. Did you have any other closing thoughts you wanted to throw in before we wrap up the episode?

Ronni: No, that’s pretty much, I think just really kind of the question of what is our privacy regarding our DNA? Do we own our own DNA information?

Brittany: So, that’s just a question. Yeah, that’s a really good question. Yeah, and it’d be interesting to think about that on your own kids and parents. Sure. Some of the parents have gotten it done. So, it’s just an interesting topic. Well, thanks, guys. Don’t forget to like and subscribe to the podcast. And until next time, we’ll talk to you soon.

Ronni: Alright, see you soon.