The rise and fall of DNA testing company 23andMe
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Explore the tropics and save at Whole Foods Market in-store and online. This is a story about you. It starts with your DNA. They promised to harness the genetic revolution and provide a brand new window into your health and ancestry. I opened my email and 23andMe had identified, I'm going to finally meet my siblings.

Millions of people around the world spat in cups and sent them off in the post, hoping to discover more about themselves. I found out about something that I could actually be proactive on. It was really, really fortunate. And maybe it saved my life to have, on a whim, done that test. And for a long time, 23andMe was a huge success.

But after many ups and downs, and most of the company board resigning last year, 23andMe has now filed for bankruptcy. And its potential sale has raised alarms about what could happen to the DNA data of its millions of users. So today, what happened to 23andMe? And what could happen to the deeply personal data it holds? From The Guardian, I'm Madeleine Finlay, and this is Science Weekly.

My name is Johanna Buja. I'm a senior tech reporter at The Guardian US. I'm based in New York and I cover surveillance largely of marginalized groups. But, you know, surveillance touches everyone now. So, Johanna, take me back to the early 2000s when this story starts and this excitement around our growing understanding of the human genome. Just give me a sense of what the

what the promise of this technology was at that time. At that time, you know, we had this huge scientific achievement of being able to actually understand the human genome and look at its patterns and figure out what it, you know, what it was trying to say.

You know, Bill Clinton being really excited about it and saying, you know, we've deciphered God's language, right? The language that he used to create humans. Today we are learning the language in which God created life. We are gaining ever more awe for the complexity, the beauty, the wonder of God's most divine and sacred gift. It will revolutionize the diagnosis, prevention, and treatment of most, if not all, human diseases.

And so there is this hope that this could really revolutionize the way that medicine worked, that it could be really tailored to your specific circumstances and the way that your body worked and your genes. And obviously, when something like that happens in an extremely capitalistic system, a bunch of people are like, oh, wait, like, how can I make money off of this? And that's what happened. I'm Linda Avey. I'm Anne Wojcicki.

We're the co-founders of 23andMe, a personal genetics company that gives individuals access to their genetic data. And so, as you say, companies began to emerge. Tell me about the ancestry of 23andMe, which ultimately kind of became the biggest of the lot in terms of the services that it was offering. When was it set up and what did it set out to do?

So in 2006, Ann Wojcicki, who is a little bit of Silicon Valley royalty in some ways, worked with two other co-founders to create this company. They wanted to be able to give people the ability to really control their health and to have more of an insight into what types of diseases or medical concerns that they might have by looking at their DNA.

We're launching a research revolution because we really want to engage with people all over the world who are interested in specific diseases. So we're starting with a list of 10 and we're going to have a contest to see which disease gets the most support. We believe this research revolution... And so that was kind of the goal when she created 23andMe. She wanted to be able to like put in the hands of consumer this literal test to like figure out, you know, what's going on with their body or what things that they should be looking out for. Initially, they really did want to help consumers

But they did it in a very Silicon Valley way, which has led to some of the troubles of today. So the promise of getting an insight into your genetics and how that might affect your health, as well as, you know, getting some view into your ancestry really attracted a lot of customers. But how popular did this become?

It was extremely popular. And I was actually talking to someone about it. And I was like, what was the point that people started giving this as Christmas gifts? Like, who started that? Because it's a little dystopian. I mean, there were millions of people just

spitting into a cup and sending it to this company. There were celebrity spit parties that 23andMe hosted. I remember Ivanka Trump at one point bragging that she had like a really low proclivity for obesity after doing one of these tests. I mean, it was everywhere. Oprah Winfrey named it one of her favorite things. I think that could have been the thing that started, you know, the Christmas gifts of DNA tests. But it was just true

Truly millions of people for a very long time were testing their DNA. Give a gift that brings the ones you love even closer with a DNA kit from 23andMe. And this holiday, get up to $50 off each kit at 23andMe.com. And in the following two decades, 23andMe really did grow and grow. I think at one point it was worth $6 billion.

billion. And of course, it hit some blips and bumps along the way. But really, the beginning of the end for 23andMe came when they hit the headlines after a massive data breach. So what happened? Yeah, I mean, I think it's also worth mentioning that 23andMe had to shut down in 2013 because the FDA did not

the tests that they were promoting to consumers. They were doing effectively diagnostic tests to determine if they could get Parkinson's or Alzheimer's and other types of diseases like that. And

And they thought that they could just do it without going through any sort of governmental process. And I think that speaks to kind of the way that the company operated. Obviously, they did a lot of reform and rehabilitation after the FDA shut them down so that they could start again. Tonight, growing questions after a first-of-its-kind data breach targeting genealogy site 23andMe. That appeared to target anyone with Jewish ancestry.

In 2023, 23andMe revealed that more than 6.9 million users had their genetic data hacked.

just by guessing a bunch of people's login credentials. But then they were able to get further and get more people's information through the social media aspect of 23andMe. They first revealed that hack because they were trying to sell a million users information, and they were people who were either of Ashkenazi Jewish descent or Chinese descent. And so that actually really exposed very specific people with very specific ethnicities and backgrounds. And so it's

It was incredibly invasive. It was incredibly scary, just again, given the sensitivity of this data and information. And since then, the company has faced a considerable amount of fallout. You've had a lot of incoming. The headlines about 23andMe are not good. I know you know it. Headlines say you're fighting for survival. Company is sinking fast, burning through cash so fast that you probably won't be around next year.

A year from now, 23andMe will be... A year from now, 23andMe will be growing and thriving. Five years from now, 23andMe will be... Will transform healthcare. I think I might be one of like the OG people to get the 23andMe tests. Timothy Caulfield is a professor in the Faculty of Law in the School of Public Health at the University of Alberta and author of The Certainty Illusion.

What you don't know and why it matters. I did as part of a book project, I'm going to say in 2009. And, you know, it was involved spitting into a tube, sending the tube off. And maybe a week later, you get an email with your results and you open it up and it tells you about all of these things that you have a genetic predisposition to.

towards. But then I also found out, you know, about my ancestry and they declared me like 100% Irish. So despite my skepticism, I still found it kind of fun and intriguing, even though the value, you know, even at the time seemed marginal. And so people went to these services like 23andMe to tap into this genetic revolution and get access to

precision medicine, basically. And I think a lot of people expected to learn about their health prognoses, get health advice. But what did they really get when they did these tests? So I think the entire idea of direct-to-consumer genetic testing was kind of based on a fallacy. The promise was it's going to transfer our healthcare system, but also make, you

And at the core of the fallacy is the idea the only way that can work is if you act on this information. So you're at increased risk for cardiovascular disease. You're at increased risk for certain cancers. You have to make a behavior change. And there's really only a handful of things that you can do that's going to make a meaningful difference in this space.

And you know what they are. You know what they are. You don't smoke, you drink less or not at all, you exercise, you eat a healthy diet, but

But the reality is now and at the time of 23andMe's emergence, and I think this is really important, before then, we knew, we knew that it's very hard to change people's behavior and it's unlikely a slight increase in your genetic predispositions is going to do it. And of course, that's exactly what happened. That's how it played out. People don't really change their behavior based on this information.

And of course, there will have been people who went for screenings because of their results or followed up on something concerning that did need further investigation.

But clinicians have also questioned what these tests could really tell you about your tendency for a disease because many diseases will have non-genetic factors. And, you know, even if these tests are over 99% accurate and reproducible, as 23andMe claims, that does still mean a lot of people will get false positives or false negatives and possibly go and get unnecessary procedures or have unwarranted worry or reassurance.

But of course, the other area of interest for customers was this information about their ancestry. 23andMe is reinventing the way you look at your ancestors using the science of genetics, your DNA. And Tim, as you said, you found out about your own ancestry when you did the 23andMe test. Did that 100% Irish result make sense to you?

It did make sense to me. You know, in fact, I lived in Ireland briefly as a child, but I was surprised it was 100%. But what's fascinating is that, again, this was 2009 and much of the database that 23andMe and other ancestry companies use was largely focused on, you know, white Europeans. You know, let's be honest. That's what it was early days. It wasn't a very robust or diverse data set.

And as that data set became more diverse, my Irishness went down. But what's interesting is because of this controversy, because of 23andMe going bankrupt, I checked again last night and it went back up. So I don't know what's going on with my Irishness. Now, apparently, I'm 99.6% Irish. I do love Guinness. So I don't know if that has anything to do with it. Likely not. Yeah.

Well, congratulations on your increased Irishness. But let's dig into how it is that with these differing

database sizes that your Irishness was going up and down. How does a company like 23andMe come to the results that they end up giving to their customers? How do these ancestry tests actually work? Basically, what they're doing is they're comparing your DNA to a data set

of other DNA from other individuals and sort of comparing where those individuals are from, right? So that's why, you know, having a large and diverse database is important because it allows you to be more precise. And that's why my, you know, my Irish went up and down because the more data they got, the more precise they could be.

So the idea is scientifically robust. What is more questionable is that kind of precision they give you, right? This idea that you're from this very specific region and you're related to these very specific individuals in the past. That's a little bit more questionable and very, very, I think, speculative. Yeah, exactly. Because, you know, we don't have genes where it's like, oh, that's the German gene and that's the Spanish gene.

These companies are looking at the variation in our DNA that differs between people because, you know, all humans have about 99.9% of their DNA in common. And so they take these absolutely tiny differences and they cross-reference them with DNA from people with known ancestries that they have in these databases to see where yours is a closest match to. And then they run these algorithms that

are trying to find a best fit to the different combinations of ancestors to yours. So this is where these percentages come from, you know, 23% English, 38% Chinese. But how accurate are these tests? I mean, how accurate do they purport to be?

A very good question, because how they present it to you is as if it's very accurate. But the reality is the accuracy, I think, has to be taken with a grain of salt. You know, I was involved in a CBC project, a documentary where they had identical twins put their DNA into a bunch of different companies.

And they got various responses, you know, and it should have been identical because they have the same DNA. Big picture, they kind of were similar. Right. But, you know, that precision that's that's provided in the report and in the marketing right on those ads, I think is a little bit of an overstatement for sure. And as you said at the outset, two really important things. Now, there is no German gene. There is no gene that is going to make you want to wear a lederhosen.

But the other really important thing, I remember when the Human Genome Project was announced as finished. And one of the big, one of the headline aspects of that announcement was we are all so genetically similar. We are all, you know, we're one genetic family. Isn't that great news? And these companies pushed directly against that.

Because from a marketing perspective, that's not very sexy. You want to say you're all different and special and you come from these unique, exotic places. And if you think about it, if you scratch that messaging even a little bit, I think there is a thin layer of racism. Because it's basically arguing that biological difference matters.

And, you know, that is a fallacy, right? From who you are as an individual and culturally, I think that's a dangerous idea that this kind of marketing and this kind of presentation of genetic data does help to reify the idea of biological difference, biological races, and the idea that genetic difference has some kind of cultural significance. And I think that's a problematic idea.

Let's start with 23andMe because they're filing for bankruptcy as part of a plan to sell the company. The co-founder and CEO of the genetic testing firm has resigned after she made several buyout offers. And Johanna, now the company has filed for bankruptcy, there's a risk of people's data being sold to another company. And anyone who's listening who may have used 23andMe could be asking themselves,

can I get my data deleted? Is this actually possible? Yes, they are asking themselves that. And the answer is not super straightforward, again, because in the US, obviously, there are better and stronger protections in the UK and the EU and some states even within the US. But overall, in the US, you can definitely delete your account, you can definitely delete your data. But you

even in the company's privacy policy, they say that they do retain some level of information, including some genetic information as part of some federal laws. You know, the company has over and over again

try to insist to consumers that no matter who buys the company, they will still have to, one, abide by the 23andMe privacy policy, which they say is protective of people's data, and two, that they have to still abide by, you know, laws and regulations. But in both those cases, privacy policies change all the time. And some people don't even read their privacy policies, so they don't know what protections they have. And two,

As I've said, there aren't enough laws to protect your genetic data. So at this point, your DNA is up for sale to the highest bidder. And it will be interesting to see who ends up buying 23andMe if they're able to find a buyer. Is there any sense of who that could be? There are just so many really horrendous,

possibilities, right? There are definitely possibilities of a company doing good with this data and purchasing it and everything works out great and everyone's protected. But there are a lot of people who could buy it, who could use it for surveillance reasons, right? I mean, there are companies who could really extract a lot of value out of your DNA and genetic information and see who you're related to and use that data against their own existing databases.

I think the bottom line is no one should be able to buy or sell genetic data. And just finally, companies like 23andMe have really inspired this new era of wellness information and the different ways that we do sort of deep self-analysis to understand our health. Where do you see all this going next?

As a surveillance reporter, my hope is that people are just more cognizant of what's going on and a little bit more careful when it comes to working with these companies. But I think the reality is that quantifying your health and quantifying, you know, just anything that is tailored specific to you from everything from fitness apps to, yeah, like health apps like this, people are really ravenous for it, right? People want this really detailed,

detailed information and data that is tailored to them so that they can make more informed choices. And I don't blame people for it. I mean, I use fitness apps when I'm out running just so I can keep track of my metrics and things like that. I understand the temptation and the desire for it. I just also

want to caution people to try to minimize the amount of information that they're handing over to these companies just because this is such a good example and a good warning for how private companies can be run. Always a good reminder to get. Johanna, thank you so much. Thank you so much for having me. And thanks too to Timothy Caulfield.

In response to concerns about the fate of customer data, 23andMe's chair Mark Jensen said, "...we're committed to continuing to safeguard customer data and being transparent about the management of user data going forward. And data privacy will be an important consideration in any potential transaction."

If you want to know how to delete your data from 23andMe, Johanna has written a handy guide which we'll link to on the episode page at theguardian.com. And that's all from us today. This episode was produced by Tom Glasser. The sound design was by Tony Onuchuku. And the executive producer was Ellie Burey. We'll be back on Tuesday. See you then. This is The Guardian. The Guardian.

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