The recent bankruptcy of genetic testing firm 23andMe has raised alarm bells for privacy advocates and consumers worried about their personal information. The data managed by 23andMe could eventually be used in any number of negative or nefarious ways, from discrimination to executing a sophisticated scam. And to be clear, this isn’t just a 23andMe problem. Bankruptcy and data theft are just as much a risk with other DNA testing firms. So, what should people know about privacy and genetic data security? Kayte Spector Bagdady, a member of the health law and bioethics faculty at the University of Michigan, joins The Excerpt to share a legal and medical perspective.Episode Transcript available hereAlso available at art19.com/shows/5-ThingsSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Chapter 1: What are the privacy concerns with genetic data?
Hello, and welcome to The Excerpt. I'm Dana Taylor. Today is Wednesday, April 16, 2025, and this is a special episode of The Excerpt. The recent bankruptcy of genetic testing firm 23andMe has raised alarm bells for privacy advocates and consumers worried about their personal information.
That data managed by 23andMe could eventually be used to discriminate against a consumer trying to buy life insurance, or it could be combined with a publicly available dating profile to target someone for a sophisticated scam. The possibilities for abuse are endless. And to be clear, this isn't just a 23andMe problem. Bankruptcy and data theft are just as much a risk with other DNA testing firms.
So what should people know about privacy and genetic data security? For more on that, I'm now joined by Kate Spector-Bagdaddy, a member of the Health Law and Bioethics Faculty at the University of Michigan. Thanks for joining me, Kate. Thanks. It's great to be here. Let's start with the basics on the privacy issues here.
Chapter 2: How could genetic data be misused?
First, there's the privacy policy that consumers agree to at the time of purchase. There's also personal information 23andMe subsequently collected from many users via surveys. That's a massive amount of highly sensitive consumer data that's highly valuable to a host of different players. What happens if this data is sold during bankruptcy?
Chapter 3: What happens to data during bankruptcy?
So 23andMe has always been very clear in its terms and conditions and notice of privacy practices that in case of bankruptcy, those data may be sold or shared with other companies external to 23andMe. One of the challenges, however, is that people are extremely unlikely to actually read any of those terms and conditions or access or even understand them if they do read them.
The other problem that you brought forward is what happens when those data are shared external to 23andMe. One potential thing that people might be concerned about is potential law enforcement use of those data. For example, I don't know if you've heard of the Golden State Killer case in California. The Golden State Killer was a murder case, and they've been looking for him for decades.
And actually, police ended up re-identifying him by using GEDmatch, which was another direct-to-consumer genetic testing company. So that's one potential concern.
Let's talk about the risks one by one, starting with how the data could be used to discriminate against a consumer.
Chapter 4: How does the Genetic Information Non-Discrimination Act protect consumers?
Yeah, so there is a law called the Genetic Information Non-Discrimination Act that's been around since the 1990s when they first sequenced the genome. And the intent is to protect against discrimination from your employer or from your health insurance.
So under this law, your employer or your health insurer is not allowed to use your genomic information to discriminate against you in your employment or getting health insurance. However, it leaves a lot of gaps. Like, for example, it doesn't protect you from discrimination for long-term health insurance, which is a big concern of people, as well as life insurance.
Chapter 5: What risks does bankruptcy pose to genetic data security?
Data is always at risk of being hacked and then exploited by nefarious players. Does bankruptcy make this data less safe? And if so, how?
It's a complicated question. 23andMe has been very clear that in the interim, while bankruptcy is pending, they're applying the same safeguards to the data that they always have. However, just a few years ago, there was already a breach of the 23andMe data and almost 7 million users got hacked and had their data shared across the Internet in ways that we don't fully understand.
Chapter 6: What type of information is most concerning regarding data privacy?
And so this is a limitation as well on people who are deleting their own 23andMe data right now because data that's already escaped and has already been breached cannot be deleted.
What are some ways that this data can be utilized that concern you the most? Is there anything that keeps you up at night?
Even though everybody's talking about the genomic information, we have some protections against that in the law. The thing that really keeps me up at night is actually the survey information that people had been filling out. So 23andMe not only has... 15 million people represented in its phenotypic or its genetic database.
It also has over 4 billion data points about they call it phenotypic data about other information about you, like your health behaviors or your health outcomes. And it's this kind of information, information about how much you drink, information about mental health diagnoses, information about your childhood that I think people really consider much more private.
and also is potentially more valuable to advertisers or other people who are trying to incentivize or discourage certain behaviors.
You mentioned DNA data and law enforcement. How does law enforcement capitalize on these databases?
It's a little complicated. So law enforcement is supposed to get some sort of access, some sort of court authorized access to require a genetic sample from somebody. And some states like Maryland have specifically outlawed law enforcement use of genetic data that have been collected under other auspices in this way. The law enforcement also has their own genetic database that they keep.
And so you can imagine if you combine the law enforcement database that they keep along with some of this other information, it can be very identifying for people. And people can get very uncomfortable with that concept. People who are used to a lot of civil liberty protections against intrusive behavior from law enforcement.
Kate, medical research using these databases is an incredibly promising field. This could involve anything from knowing you're at a higher risk for getting a certain disease or condition to helping scientists customize your treatment. What's the status of this work, not just with 23andMe data, but with other genetic testing firms?
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Chapter 7: How does law enforcement use genetic databases?
Yeah, that's the amazing thing about science, right, is that we can't always anticipate the different things that we're going to be able to do with genetic data or other kinds of information in the future. So, for example, generative AI or generative artificial intelligence has been applied in genetics just recently and has made amazing progress recently.
because it can analyze massive amounts of data at the same time and start to associate variants and genes with health outcomes in ways that we never could have done before. But the fact that we also can't predict exactly how people are going to use genetic data in the future also makes it hard to make sure people are consenting and fully understand what's going on.
Finally, Kate, for people who are listening or watching who've used the services of 23andMe in the past, what should they do to protect their data going forward?
So I had also used 23andMe in the past, mostly because I teach about it. And so I wanted to know more about how the system worked. And so I did go in and delete my own genetic information. I think that people can do that right now. And 23andMe is honoring it as best they can.
But I guess my big warning would be for the future, when people are putting private information, health information, as you said in the beginning, dating profile information, any sort of data, those data are valuable to more people than just yourself. And every time you're putting it into a commercial platform, it is not protected by our health privacy laws.
And I don't think that people really understand that. So anytime a commercial platform is asking you personal questions like, when did you get your last period? Or how much alcohol do you drink? I would like people to be really cautious moving forward about what they're actually doing with that information.
And what if members of your family have submitted DNA to these testing firms? Is there potentially a direct link to you?
Yeah, that's a great point, because one of the other things that makes genetic data so unique is that not only does it completely uniquely identify you as a person and it cannot be changed, but it also identifies your blood relatives. And this is sometimes a challenge with families in the clinic that I work sometimes in the hospital at the University of Michigan.
That family's face is that one face. member of the family would like to be tested for an invasive genetic disease that might not have a treatment and the other family members don't want to know. So this is a tension that happens both at the clinic and in databases because that's exactly how they re-identified the Golden State Killer was actually by identifying his relatives.
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