Hello and welcome to The Excerpt. I'm Dana Taylor. Today is Wednesday, April 16th, 2025, and this is a special episode of The Excerpt.

The recent bankruptcy of genetic testing firm 23 of Me has raised alarm bells for privacy advocates and consumers worried about their personal information.

That data, managed by 23 and Me, 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 23ME 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 Specter Baghdadi, 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.

First, there's the privacy policy that consumers agree to at the time of purchase.

There's also personal information 23Mee subsequently collected for 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?

So 23ME 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 23 and me.

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 23ME. 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 GED match, which was another direct-to-consumer genetic testing company.

So that's one potential concern.

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