The Current - Is your DNA safe with 23andMe?

Episode Date: November 15, 2024

Millions of people shared their DNA with 23andMe, but now the company is in financial trouble and shedding 40 per cent of its workforce. What does that mean for all the genetic information the company holds?

In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with Season 3 of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy.

On Drugs is available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway and this is The Current Podcast. 23andMe changed my entire life and I had no idea that a saliva sample would have such a big impact on my life. Before Rachel Southard took a 23andMe DNA test, she had asked her parents if it might reveal any secrets. They said no. The results proved otherwise. Lo and behold, I had a bunch of half-siblings populate. 23andMe was saying that these people shared X amount of genetics with me and they are likely to be my half-sibling. Turns out Rachel's parents used a sperm donor for her and her siblings. She

posted on YouTube how, if not for 23andMe, she feels she would have never known her whole self. This has made my life make so much more sense and I feel like it was the missing puzzle piece to explain my life, my interests, how I am. 23andMe has sold more than 12 million of those DNA kits, but the company has fallen on hard times, announcing this week they will lay off 40% of their employees. This also comes after a massive security breach last year that exposed the data of nearly 7 million users.

Timothy Caulfield is a professor in the Faculty of Law at the University of Alberta. His research is in health, law, and policy. Tim, good morning. Good morning, Matt. What was the promise, as you understand it, of 23andMe when it first hit the market? Well, this is a topic that I've been following right from the start. Right out of grad school, I was doing research on the policy issues around genetics. It was the human genome project era. There was just a tremendous amount of excitement about the role of genes in our life. You know, it became part of pop culture. There were headlines everywhere. They seemed to be finding a new gene for this or that constantly. So 23andMe really, I think, emerged during that time. I know they

emerged during that time. And there was this promise that if you get your genes tested, it's going to change your life. And it was part of a broader kind of suggestion that the genetic revolution was going to revolutionize healthcare. And so I can remember this so well, Matt, there was a lot of excitement. And I think everyone really believed it was going to happen. I call it Geno hype, right? There was so much hype. So that I think was the foundational promise of 23 and me. And then, of course, what you start to hear as your first guest highlighted, it became about ancestry discovery, about family discovery, and that became a big marketing promise too. But even there, underlying there, there was these promises that you're going to find out more about yourself as your guest highlighted, right?

And that somehow your genes, a promise that I actually don't believe, your genes are really fundamental to who you are as a human being, both for your characteristics, but also for your sort of heritage, where you're from. If you have, you know, German genes, you should be cheering for the German soccer team, that kind of thing, which is, you know, fundamentally problematic on many levels. But those were the promises. And that Ancestry one in particular helped to drive the industry. So you had 23andMe and Ancestry.com. They kind of took off.

And their ads were absolutely everywhere, everywhere. But as you've highlighted, it's starting to wane significantly. I mean, the interesting thing is that it was an at-home kind of thing. You spit in the tube and send it away, and off you go. You did this yourself, right? I did. I did it for a book project I was working on. And I've met with the 23andMe team, you know, with the executives, you know, several times.

And I think they believed this. You know, they believed that this really was revolutionary, and they were doing good work here. And when I did it, you know, I got back my test. So these are early days, right? And it was tremendously expensive then. I think it was like $1,000. That's my memory anyway. And now it's like 80 bucks or something $1,000. And they they tell you that they told me that I was increased risk for cardiovascular disease, they told me I had an increased risk for certain cancers, you know, no one wants to hear that. But then they give me my personalized, my precision recommendations about what I should do. Eat healthy, exercise, don't

smoke, drink in moderation. That sounds very precise. Yeah, really, real precision stuff. You know, and that's the recommendations that they still provide, right? The promise just was never fulfilled. And I think that that's one of the reasons that we're seeing this decline. I mean, how much of this also is the fact that, I mean, you spend whatever it is, $1,000 or $80 once, and you don't have repeat customers. How much of that do you think, there's a ceiling for this type of business in some ways? Yeah, I think that's a really good point. And I think particularly with the with the um ancestry part of the equation because you did see this spike in in popularity you know a few years back when ancestry you know before the

pandemic when ancestry stuff really took off but it seems the market seems to be saturated right and obviously and um you're right you you can test once and you don't need to they do come out with different products and and and sort of like if you give them a little bit more money, you have this sort of other kind of service you can get. But I can still go on the 23andMe website and get all the bad news about all my terrible predispositions and how I'm not going to be an elite sprinter. I can go do that. But you're right. That was the money that I gave them over a decade ago. How sound was the science behind what the companies were claiming in terms of being able to run through your DNA?

And yeah, sure, you may not be an elite sprinter, but you also might be predisposed to certain forms of disease and what have you. How sound was that science? So I'll say variable. I'll say variable. I think that the general promise I don't think was rooted in good science from the get-go. Because, as I highlighted earlier, in order for this to be effective, to be revolutionary, right, both for individuals and for, you know, healthcare systems more broadly, you had to be able to change people's behavior. That's, you know, that's the only way it's going to make a difference, right? You have this risk, go do this behavior. And we all know what those behaviors are. So the question becomes, does genetic risk result in increased behavior change? And the evidence we

had before 23andMe emerged said no. And the evidence that we've had after says, in general, no. Yes, there's these niche examples where it might make a change, but sort of globally and in the aggregate, the answer is no. So that science in itself, the promise was never going to be realized because of that. In addition to that, the connection between genes and disease and other complex characteristics has turned out to be fantastically complicated, right? Early days in the Human Genome Project, I can remember this very, you know, I was doing a fellowship on the APOE4 gene in the United States, and there was this belief, and remember BRCA1 and BRCA2, those are the genes connected to breast cancer. We thought we'd find just many, many genes like this. These are genes that are highly

predictive, not the APOE4 as much as BRCA1 and 2, but we thought we'd find all these highly predictive genes, and it didn't really pan out like that. Genes are just one piece of a very complicated puzzle for most conditions. Yes, there's diseases where genes are very, very important, but when you think about those big chronic diseases, et cetera, one piece, an important piece of a very complicated puzzle. It's interesting because they also, in the process of laying off 40% of their workforce, have shut down the therapeutics division of the company,

which was meant not just to be able to tell people that these are things they may be predisposed to, but also develop new medicines that potentially could tackle those things. What did you make of that? Yeah, I thought that was interesting. Here I am kind of dumping on 23andMe a little bit, but they really were, I think, the most sophisticated of these direct-to-consumer genetic testing companies. And there have been research, you know, they partnered with researchers,

they put out a report, they had a report not that long ago about diabetes and genetics. So they were trying to do that work. And having met the executive, you could sense that they wanted to do that. So, but I think this really speaks to the reality of how this hype, this genome hype that from the early days of the Human Genome Project really hasn't played out as people thought it would. Hey, look, there's a lot of fantastically exciting research going on. We're still involved with really exciting, interesting genomic research, but it really hasn't played out as we probably should have predicted. You know, science is hard. It's iterative. You know, there's fits and starts, right? It really hasn't played out like those early headlines promised. In the meantime, as the company goes through financial headwinds, it has a lot of data on people, genetic data, the information that you submitted as part of that research.

Should people be concerned about what 23andMe has? Yeah, I mean, this is interesting. what 23andMe has? Yeah, I mean, this is interesting. So if you go to their website, they have obviously a privacy promise on the website. And they claim that they're gonna do everything they can to protect people's privacy. And if they sell the company,

and they've recently said they're not going to, but if they sell the company, all those rules will transfer. If it goes bankrupt, all those rules will transfer. I don't know. I think there's a lot of uncertainty about that. And by the way, there's already been a major data hack for 23andMe. It happened last year.

Millions of samples. In fact, they settled a lawsuit. I think it was $30 million, a class action lawsuit, because of this breach. And so my data was potentially available know, potentially available for people to, the hackers to look at. So there have been breaches, there have been breaches with other databases, unclear how this will play out if it goes bankrupt. So there are, I think, reasons to be concerned. And it is interesting because privacy concerns loom large in people's minds when it comes to genetic data. And I think there's an interesting paradox here, Matt,

because one of the reasons that people are very concerned about their own genetic data is because the research community and companies like 23andMe have told them that their genetic information is super special and unique and revolutionary. And, you know, you should be concerned about your genetic data. So, you know, it's kind of ironic that their marketing about the value of genetic information has maybe heightened the privacy concerns around genetic information that may have led people to be more hesitant to get involved with these companies. How could, just finally, how could it be used? I mean, what is, if people are worried, what should they be worried about? How could that data be used?

Oh, how could it be used? Yeah. So they could look at it to get a sense of where you're from. And so that other breach talked about that, used for discriminatory purposes. They could find out what you're predisposed to. I think we have to be careful not to overhype the genetic discrimination risks associated with this. But they're real. They're there. So could, if you were an executive or something like that, and someone found out you were predisposed to all these, you know, genetic conditions, could that

information be used for nefarious purposes? Possibly, but I think we need to be careful not to overhype the concerns. The privacy risks are real and people feel very attached to their genetic, studies have consistently shown this, attach their genetic information, even if they don't know what to do with it, Matt. Like even if they can't read it themselves or if it's not necessarily relevant to their health or their future decisions, they still feel very attached to their genetics. And I think that in part is because of the pop culture messaging they've heard for decades. Any regrets about spitting in that tube and sending it off in the mail?

No regrets. I thought it was a fascinating journey. And it was funny because, you know, my whole life, Matt, I've been a sprinter. I met my wife on a track team. And the first thing I saw when I opened 23andMe, I have four beautiful kids because of track and field. first thing I saw when I opened 23 and me, I have four beautiful kids because of track and field. First thing I saw when I opened 23 and me, unlikely sprinter. Thank God I didn't get that test before I met my unbelievable wife. Tim, it's great to talk to you as always. Thank you very much.

Thank you. Timothy Caulfield is a professor in the faculty of law at the University of Alberta. For more CBC podcasts, go to cbc.ca slash podcasts.