Kayte Spector-Bagdady
Appearances
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
and also is potentially more valuable to advertisers or other people who are trying to incentivize or discourage certain behaviors.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
So genetic testing is a wonderful thing. It's something that allows us to diagnose and predict certain health outcomes and associate diseases and disorders with certain genetic variation, such that we might be able to intervene with things that can help people before the problem starts, or we might be able to prepare people later for something that they're going to face.
The Excerpt
SPECIAL | Is your genetic data secure?
I do genetic research myself. I think it's very promising. But also, we need to be considerate of the people that that genetic information comes from, and it's a balance. And actually, that's why GINA, or the Genetic Information Non-Discrimination Act, was passed in the first place.
The Excerpt
SPECIAL | Is your genetic data secure?
to make sure that people felt comfortable taking a genetic test to help their health care by knowing that there were some protections against discrimination. So I think it's an incredibly promising field.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
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.
The Excerpt
SPECIAL | Is your genetic data secure?
He never did ancestry testing himself, but because people are inherently linked by blood, it can reveal information about each other.
The Excerpt
SPECIAL | Is your genetic data secure?
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.