Emily Mullen
Appearances
Today, Explained
The drama and trauma of 23andMe
So HIPAA is the Health Information Privacy Act that we often hear about. That protects information only when we're talking about health entities sharing data with each other. So in this case, 23andMe is a... company that sells genetic testing kits. They're not a health entity. So HIPAA does not protect your genetic information in this case.
Today, Explained
The drama and trauma of 23andMe
There are a couple of states like California that do have more stringent protections, but there is no federal law that protects information collected in this way.
Today, Explained
The drama and trauma of 23andMe
I think we're seeing consumer DNA testing fizzle out, at least in its current form. I think people are much more aware of the privacy risks now than when these tests first came out. So I think there's been an erosion of trust with these companies for at least a couple of years now.
Today, Explained
The drama and trauma of 23andMe
And again, for the people who went to these companies to get that ancestry information or learn about a relative, perhaps they were adopted, that sort of thing. A lot of those people have already taken these tests at this point.
Today, Explained
The drama and trauma of 23andMe
Yeah, so we're going to go back, actually, a couple decades. So there was something called the Human Genome Project that was completed in 2003.
Today, Explained
The drama and trauma of 23andMe
And this was the culmination of 13 years of research to sequence the entire human genome.
Today, Explained
The drama and trauma of 23andMe
So, you know, your DNA is made up of these bases. The Human Genome Project was an effort to spell out all of those letters end to end. And I think that really sparked this excitement in the field of genetics and the idea that genetics is going to explain everything about everybody.
Today, Explained
The drama and trauma of 23andMe
Yeah, so 23andMe was founded just a few years after the Human Genome Project was completed in 2006. And the company initially offered a retail DNA test for $1,000 for ancestry and some health information. 23andMe actually threw a spit party where attendees, while they were dancing and drinking, spit into tubes, submitted their... Ah!
Today, Explained
The drama and trauma of 23andMe
They submitted their DNA samples for testing, and the price point really dropped over the years to the point where these tests became much more accessible to the average person.
Today, Explained
The drama and trauma of 23andMe
So yeah, a lot of Americans have taken these tests, and in particular, a lot of white Americans. Something like one in five Americans have taken a consumer DNA test. So it's a lot of people. And there was a study that came out a while back showing that it will be possible to identify almost 90% of Americans with European history through DNA. their cousins in genetic genealogy databases.
Today, Explained
The drama and trauma of 23andMe
So what that means is that even if you personally haven't taken a DNA test, somebody in your family or extended family probably has, and you could be identified in that way.
Today, Explained
The drama and trauma of 23andMe
Yeah. So despite selling a lot of tests over the years, this might come as a surprise for listeners to learn. But 23andMe has never been profitable. They never figured out how to really monetize the data. Oh, wow.
Today, Explained
The drama and trauma of 23andMe
Right. So that's the big question, is what happens to all this data now? For now, 23andMe says its existing consumer privacy policies remain in place, and the company has not changed how it manages or protects consumer data. If the company comes under new ownership, they could revise those privacy policies for new customers and new data collection. But
Today, Explained
The drama and trauma of 23andMe
If you're one of those people who previously opted into your data being used for research purposes and you haven't logged into 23andMe since you've taken a test and you've sort of forgotten about it, okay, well, your data could likely be used by whoever the new owner is for these purposes.
Today, Explained
The drama and trauma of 23andMe
So if you have used 23andMe in the past and you want to change the way your data is being used, you can absolutely still go and do that right now. Yeah. Like how do you delete that data? Yeah. So when you log into 23andMe's website, you go to settings in your profile. Then you can scroll to 23andMe data and click view.
Today, Explained
The drama and trauma of 23andMe
At this point, if you want to, you are able to download a copy of your genetic information so that you have that moving forward. Then you can scroll to delete data and click permanently delete data. You can also ask 23andMe to destroy the biological sample it used to extract your DNA data if you previously authorized the company to keep it.