i deleted my data a month or two ago, am i safe?
this post was submitted on 20 May 2025
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Privacy
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I hope I deleted my data just in time not to be (legally) included in this.
Sweet summer child.
That's why I specified legally. Which, being American involved, I reckon still has very little meaning. I cannot undo mistakes I made 15 years ago. Stoically, I can only worry about how I can act in the present.
Narrator:
They didn't.
This is probably a good time to remind ourselves of the time 23AndMe genetic data got hacked and most likely sold on the dark web. This data is all over the place at this point, and it affects not just the individuals who took the tests but also their relatives.
data protection is at risk of becoming an oxymoron
Hahahahahaha
Hindsight is 20/20. ITT lots of folks proud of themselves for not falling into this trap, but try to understand, 23andme was named "invention of the year" by Time in 2008. That's ~~before~~ [edit: around the time] google and facebook had begun monetizing private data. Data privacy, or even the power of data itself, was hardly appreciated by private companies let alone in the public consciousness.
Orphans, people with absent parents, decedents of slaves, the list goes on for folks who would understandably go for an affordable way to access their genetic history. Sure, there were plenty of folks since then who had all the information and still went for it, but what about all those who became aware of it too late and when they requested their data be deleted were told it would be kept for 3 years!
I'm saddened to see more victim blaming here than anger at the ToS/privacy policy fuckery and a complete lack of consumer protection.
Don't give me that 'hindsight is 20/20', it was the first thought I had when I heard about this.
'How are they going to monetize this?'
Either they sell your data, or they go under and... sell your data.
There was no other option from the inception.
None of this is new, and private companies gobbling up any data they can hasn't been new since at least 2005.
The future is not evenly distributed.
Were you working with data back then? Marketing? You want to argue that there was the same public knowledge around digital data in 2005 (when web 2.0 was in its infancy) as there is now in 2025? Most books I've read on the topic weren't even published till the late 2010's. Surely there was a moment or experience that woke you up to the importance of privacy and the capabilities of data. Not everyone has had experiences like that, even today.
I'm not dismissing personal responsibility, I was just shocked that the dominant, first reaction was "morons" and not "these companies are immoral, and don't deserve our trust." I want privacy as the default and not an overwhelmingly individual arms race against corporations and professionals. The latter is going to lose, and that will hurt the rest of us. If we want the former, as a community we have to get off our high horse, get on the ground, and grow by welcoming those that got burned into the fold. edit: grammer
Don't give me that 'hindsight is 20/20', it was the first thought I had when I heard about this.
'How are they going to monetize this?'
The tests weren't free.
So what are they going to do after?
You won't get tested twice, they still need to pay for existing. After they test everyone, how are they going to keep it up?
Unless they take more money from you, they will sell your data to someone else.
Insurance companies? Advertisers? Those things provide value for bad actors more than for you.
I'm glad you had the foresight to keep yourself safe, but unfortunately not everybody is as observant or skilled in critical thinking as you are. We all started from ignorance, and no matter how well-learned a person is, they can't possibly know everything. The least we can do is remind ourselves that we're imperfect too, and have some compassion for those that are just discovering things that we have already learned.
I have no issue with that, but let's not act like there was anything else other than a trend.
If people said 'I got caught up in the moment, everyone was doing it' then fine, you got duped, it happens.
But don't give me lame excuses. Most people didn't approach it critically, which is not unusual, but own up to it.
I'm tired of the same excuse over and over.
And those tests weren't even that cheap.
I only want to disagree about Facebook not monetizing private data in 2008.
My wife was in politics/campaign management. They were already selling fairly sophisticated targeted ads by then.
I was shocked/terrified by how well they were targeting and it wasn't even close to what they have today.
FUCK CORPORATIONS.
You're right. My mistake. I was going off memory and 2009 came to mind, but now that you mention it I do remember hearing about tech for the 2008 election- but I heard that years later, after cambridge analytica. All's to say, it was emerging around that time and it wasn't a big, public announcement. People around the epicenter knew but most were in the dark. I know i was, till the mid 2010's. Since then I have 0 trust in big tech/most corporations, but I've definitely made my share of mistakes and wish there were more protections/public education.
I didn't get the choice when my easily fooled parents decided it was a good idea.
We tried the 'delete your 23 and me data' but who the fuck knows if that works.
Now some corpos own my DNA probably.
Thanks mom.
Wasn’t 23 and me already a corpo that owned it though
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You're probably affected by this even if you didn't participate.
The thing about genetics is you can make reasonable predictions about individuals if you have data on their relatives. Heck, you can reasonably make regional predictions with genetic data that will be fairly accurate.
If any of your parents, grandparents, aunts, uncles, cousins, siblings, etc took this test, then you are now at least a little exposed.
It shouldn't take hindsight to read the fine print in your 23andme contract. They straight up told folks, that taking their test meant signing over ownership of your DNA samples to them, for whatever future purpose they had in mind.
Anyone who didn't clue in to the fact that meant they were paying that company to own the rights to their DNA, is an idiot.
If i would look for my parents or a lost sibling or whatever, i wouldn't care, take my data i guess. But everyone knows that almost everyone who took that test did it for attention and because it was the cool thing influencers did.
Hardly. It stated that you could request to have the sample destroyed and your data removed. it's also been revised multiple times. You read the contract, no?
You read the privacy policy & ToS fine print of every product, service, software you use? And every revision. Even when it's not broadcasted? The contract / "informed consent" model is totally broken. You really want to build your stance on these issue around the claim it's a reasonable system anyone can and should have to navigate?
Man, when I read the terms of service, it seemed pretty clear who owned your sample...and it wasn't me. That's the biggest reason I have never used one of these services. It seemed like an outright scam. I can't speak to any changes made over the years, but at the time I looked into it, it was a hard nope for me. I have no idea why anyone would voluntarily give their DNA to a company like that, without a full guarantees it wouldn't be used exclusively for their own profit.
If you read terms of service and think anything is clear then you have a gift that not many possess. I hope you can appreciate that. Sure, there are a lot of folks who should know better, but there's also a lot who are bad at navigating these things. It's by design. I think it benefits us to be sympathetic and welcoming, and to direct our anger at companies and laws. We need the privacy mindset to spread and fast. I think I understand where you're coming from though. It's so frustrating to care about privacy more than most people.
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I remember when I was younger and I was really learning about the capitalist system, but not from a communist point of view or a socialist point of view. I was just caught up with libertarianism and right-wing ideology and whatever, but nothing like it is today and I was learning about IBM and how they categorize the Jews in the camps. And then I realized all these corporations all have a legacy of brutality. There's more to all this, and people are just not strong enough to accept what's happening in our country. I'm a Libertarian Socialist.
I literally had an econ professor years ago who directly told us "do not take a genetics test". This was before the ACA
The reason was simple. It's information that once a private company gets a hold of it, they will use it to hurt you. Whether it's a drug company that learns you're predisposed to addiction, so better to give you it people around you nice temporary discounts on addictive meds, or an insurance company that learns you're predisposed to cancer, so better to look for ways to deny or drop coverage.
Once these companies know a little bit about your nature, they'll exploit any aspect possible to increase profits.
This was not a progressive/socialist econ professor. Just someone who knows how capitalism works.
Unfortunately, it is too late. They don't need your specific genetic code to extrapolate about you, just the code of one of your relatives who wanted to find out their heritage for fun.
Without serious privacy laws we will be used and abused by corporations, get ready to experience Gattaca in real life.
I never fell for it. I hope none of my siblings did, either.
I would have thought that data would be worth more. Maybe the AI guys will just steal it, instead?
Siblings and first cousins.
Most likely the data 23andme already gathered is enough to narrow down just about anybody in the US.
340 million and me
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This is such a dramatic understatement. They didn’t just sell the genetic data of those 15 million customers. They sold the data of everyone they’re related to, as well. Which is the majority of the population.
You really don’t need to sample a large percentage to get the data of almost everyone.
My aunt did this along with posting a bunch of family photos and falling for those quizzes that ask your pet's name or your childhood address. If you have one person like that the privacy of your entire family is compromised.
We told her back around 2010 not to do this kind of stuff, but she's somewhere between "If I have nothing to hide" and "what's the harm?". I hope she gets it now, but we don't talk to her often
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entirely fucking predictable. and 256 mil is chump change for essentially genetic data that could be extrapolated to most of the country.
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And this, ladies and gentlemen, is why you don't give your data to companies: their executives and shareholders care more about their bottom line than your privacy.
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My dad was all about this for a while, including convincing my siblings and a few of his siblings to get the report.
I guess that means I'm somehow linked in to this if I ever happen to leave my DNA laying around in the wrong place.
He's awfully quiet about it now though.
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