23andMe confirms hackers stole ancestry data on 6.9 million users::Genetic testing company 23andMe revealed that its data breach was much worse than previously reported, hitting about half of its total customers.
Would you let government collect DNA from people when they are born? Absolutely not, but I will definitely give it to a silicon valley start up who will then proceed to sell it and have it stolen.
If you’re allowing a corporation to have it, you are giving de facto consent for government to collect it with zero regard for your rights whatsoever.
They have the greatest ability to buy it, the greatest ability to steal it, and a fairly unique ability to confiscate it.
Good point with that last sentence.
Yeah but what about great aunt Marge? Don’t you want to know if it was Scotland or Denmark?!?
I don’t see how government vs private makes any difference.
A baby isn’t capable of informed consent, so their DNA shouldn’t be collected unless it’s required for some medical reason (and then the sample should be immediately destroyed and no records kept).
If an adult, however, wants to voluntarily give these folks a DNA sample… well that’s their choice. I’m not surprised it ended poorly.
My gf wanted so bad for me to send my DNA to these clowns. I declined due to privacy reasons. She tried to convince me that they keep your info private. I told her that even if that was true, the government could still access it. She thinks I’m paranoid. And now her personal info is likely part of this leak.
Lucky for you, if enough of your relatives send in their DNA they don’t need to get anything from you directly.
If you’ve ever had blood work done at the doctors office or had any tissue removed, your DNA is almost certainly on file somewhere. Human specimens are very valuable in research so whatever isn’t needed for testing is sent off to various research facilities. There really aren’t laws about tissue ownership so medical facilities can do whatever they like without your permission, though some still ask. Source: “The Immortal Life of Henrietta Lacks”
This is only partially true. Due to things like Henrietta Lacks cells (HeLa cells for those working in cell culture), we actually have informed consent around this. They can’t just use your samples for not consented collection purposes (though in some cases, the further testing may fall under the original consent)
HHS rules note:
“If the tissues are identifiable, then subjects must provide consent for the secondary use and that consent must cover the elements of consent in 21 CFR 50.25.”
That really only applies to healthcare providers covered under FDA and HIPAA regs.
Obligatory not a lawyer etc.
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I told her that even if that was true, the government could still access it. She thinks I’m paranoid. And now her personal info is likely part of this leak.
You’re paranoid and she’s probably part of the leak.
The odds the government gives any kind of shit about your 23 and me data, much less could competently do anything with it, are vanishingly small. That’s just pure paranoia.
Sadly you are mistaken here, the government is very interested in your DNA data. Check out this article about how they caught the golden state killer:
Law enforcement officials are more interested in whether their perp is closely related to other people in the database
What is your concern with doing a DNA spit test? I’m honestly curious, because I haven’t heard an actual answer yet. I don’t see how it exposes any more information compared to what advertisers already have.
Is this a serious question? Advertisers don’t know that you carry a gene that means you may prematurely die? They’d like to know though, so they can feed you life insurance scams when they know you’re vulnerable, “last chance” style round the world cruises, last will and testament legal services and of course pharmaceuticals. They also want to target your loved ones while they know they’re especially vulnerable after you’ve loss. They want to send your spouse widows dating apps and psychic hotlines, etc. Advertising is knowing your specific weaknesses/vulnerabilities and exposing you to your triggers in your most vulnerable moments,for profit.
Also, this data is correct, and it’s Data that can/will be used to deny people health coverage/insurance/jobs in the future. Also a potential tool to reveal layers of ethnic heritage they would make the nazis drool (look into how IBM did a version of this for the nazis to use the census to help enable the historic scale of that genocide). With trump potentially around the corner and other rising fascist powers worldwide, and the only way trump stays out of jail is to remain president indefinitely and “silence” his detractors, it’s just too much sensitive data to be amassed, especially by a poorly regulated private company. Also makes your DNA vulnerable to cups gaining access eventually and bringing you in as suspect for crimes you didn’t commit and, especially in places like Texas, executing you.
Better question is, why are you on the side of this topic that you’re on?
Insurance companies would love your DNA too, for all the “good” reasons. And imagine not getting a job because of your DNA.
Zipcodes can do just so much…
For me the reason is the same than with all collection of personal data on social media. There is no any one specific scenario I’m worried about per se, but it has more to do with the potential for misuse in the future. I hate to compare things to nazies but it’s the best example I can come up with. Just imagine what a goldmine facebook user data would’ve been to them. There’s always the possibility for a fascistic government of some kind to take power one day and a database containing these amounts of personal information of near every person alive has near infinite possibilities to be misused. I couldn’t possibly imagines all the ways this information could be used against me but it can and thus the safest way is to prevent them from having the data in the first place. It’s sort of an insurance. You hope that it will not be needed and it probably wont but going completely without is pretty irresponsible too.
I guess it would generate a bigger pool of people if they want to get super technical about who they want to genocide. US citizens already have to hand over their demographics to the government, but worst case… I could entertain that idea.
Have any of your blood relatives had any diseases that have a genetic component? Cancer? Heart disease? Yeah, we don’t cover that, it’s as clear as day, in the fine print, on page 13,131 of indexed addendum information. Additionally, you knowingly had this information from a DNA test, which constitutes fraud, making your policy null and void. Thank you for your business.
Also, they could deny you coverage because of a preexisting condition, but come up with a different reason officially if that’s illegal. If they can get your dna through a back channel, they have plausible deniability for their motive.
That’s a good point that I hadn’t considered. I’m not sure how that would go over legally in the US. They could gather very similar information by looking at records from relatives who have used the same insurance company, even just financial records, but that is monitored closely by the government. I wonder if we’ll be seeing any lawsuits in the near future.
What happens the worst that can happen when you give your DNA to a privite company? Delta Airlines will frame you for murder.
uh, would have pegged United for that.
Didn’t they originally try to brush this off as credential stuffing and aggregation?
There should be harsher penalties around mishandling people’s data, especially if you lie about it to save face.
So I got an email today telling me that I would automatically accept their new ToS (which included barring me from class action lawsuits without 1-2 months of arbitration), but I could email them to refuse the change and keep the old ToS. I emailed them to refuse the change, was that a mistake?
I find it hard to believe “not responding to an email” is consent. I mean they can write that in an email but there’s no way they could hold you to that in court.
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I would think so. IANAL but I’m sure there’s a ton of precedence for cases similar to this. HIPAA laws are very good for the people.
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It’s typical in software.
No
Not a mistake, but their ToS change without consent probably wouldn’t stand up in court.
Two days ago they sent an update to their TOS that they will require arbitration and to reply to their legal department to “opt out”.
I got the email from 23 and me about changing their terms of service as well (wordy for search engine optimization). I opted out of the change
Thank you. Done.
Instead of them selling it.
Supposedly not selling it…
Sorry, “donations” like a church. Dirty government money is tax free
Supposedly Facebook runs a really clean and straightforward operation, too. I hear banks are really generous as well.
I hear bitcoin investors only want to decentralize currency, too. It’s def not a scam. Totes legit. Let’s all go buy lots of bitcoins! Who wants monkey nfc’s and exploding kittens nfc’s!?
You sound pretty confused are you okay?
And this, children, is why we don’t give deeply personal data to companies.
So hackers can have my info, but I can’t have a copy of my own data.
Hey, at least they weren’t put in the Jewish Database.
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Yet more evidence that we shouldn’t be handing over sensitive data to random companies. Will this change anyone’s behaviour? Sadly, probably not.
I struggle to see what someone could do with that information. My ethnicity is already known by the government and every advertiser collecting my information online. I randomly had my identity connected to my cousin’s before any family took DNA tests. Her name would show up in those questionnaires along with what car I’ve owned and where I’ve lived when I had to go through online government stuff.
I’m relatively paranoid about giving out personal information, but I don’t consider my spit very sensitive.
You get a phone call from someone claiming to be from 23andme but they’re not…
Hi it’s Jim from 23andme.
Just going through security with you. You did a test with us on the 5th Dec, your mother is X and your father is Y.
Ok that confirms who I am.
So as I said it’s Jim and in your results we see you have a genetic condition which means you will have early onset dementia.
We offer a preventative treatment. Want to enrol in the trial? It’s $200.Not the best example I admit but an example of how that data could be misused and you’ve just paid “Jim” $200
It sucks as a whole. Imagine having everyone’s DNA. You can develop things that hurt a specific set of people only. It may or may not affect you directly, but it affects our communities. You’re right as an individual. No one really cares about your hair or spit and if they did, it’s very easy to get a hair sample in most cases without you even knowing it. As technology gets better there will be (maybe already are ways) to get your DNA that are less intrusive or need less material. AI trained on DNA and physical attribute could probably narrow it down A LOT using video alone.
The stolen data included the person’s name, birth year, relationship labels, the percentage of DNA shared with relatives, ancestry reports, and self-reported location.
23andMe also confirmed that another group of about 1.4 million people who opted-in to DNA Relatives also “had their Family Tree profile information accessed,” which includes display names, relationship labels, birth year, self-reported location and whether the user decided to share their information, the spokesperson said.
This is of course bad but is everyone thinking that actual DNA information was copied or what? That’s what it seems like from y’all’s comments. I mean that’s a pretty easy leap to make, it’s a DNA testing company after all, but they seem pretty specific on what data got out. I don’t immediately see that this specific information is worse than say what a credit reporting agency has on you.
The relatives thing is weird anyway. I took the 23andMe test and downloaded my raw data and wrote a script to find different marker values. The other info I provided the site probably isn’t accurate. Don’t really care if someone gets my DNA markers either cause DNA isn’t like what most people think it is.
There should be a mandatory test or exam before allowing companies to handle user data. And it should be perpetual.
This is so predictable. Large databases are valuable targets for theft.
It seems like the vulnerability at 23 was users who used the same password on another site.
Presumably the attackers had those databases (easy to obtain peeps, thats why we use different passwords and password managers) and a good script that let them login and download. Probably over a whole lot of proxy IPs, so it was hard for 23 to see that they were under attack for a while.
Don’t know what else to say… Maybe 2 factor authentication should be more common. I guess with them you could spit on your monitor and it should log you in.
If that’s the only issue it seems a bit of a far reach to say they were breached.
Oh no, they know I’m 7.2% French.
Ah, so they’ll miss out on a few sales of all that genetic data people pay them to collect. Boohoo.
