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California Attorney General issues consumer alert for 23andMe customers

468 points by thoughtpeddler 2y ago

timewizard 2y ago
"Why would you spit into a tube then mail it to the internet?" -- Bill Burr
- toomuchtodo 2y ago
  Because I was curious. (submitted a data deletion request)
  - qqqult 2y ago
    is_deleted = True update is in progress
    - toomuchtodo 2y ago
      And if it turns out that’s the case, I’ll file suit and establish a class action on my own dime. That’s how the gears turn and recourse made available. Actions have consequences.
      - dandrew5 2y ago
        How would you know? I also submitted a deletion request to that airport identity service Clear to avoid missing a flight one time. I received an email "Your request has been received" and nothing else. Is there a way we can validate our information is actually deleted?
        toomuchtodo 2y ago
        It will either be disclosed in bankruptcy proceedings, and failing that, finding a whistleblower who has access to the data and can/will attest to the fraud.
- hayst4ck 2y ago
  With regulations, it really is the type of thing that would benefit a lot of people as well as biological science as a whole in America.
  - pmags 2y ago
    All of Us -- https://allofus.nih.gov/ https://allofus.nih.gov/ -- and similar efforts benefit biological science as a whole. 23 and Me not so much...
  - rchaud 2y ago
    If it's so valuable, companies can pay you for it, just as blood banks do for plasma donations. 23andme are double dipping by charging for these tests and turning around to sell the data for drug discovery research or wherever it goes.
  - themagician 2y ago
    It's actually wild to imagine what could be done, with current compute power, if you had the full genome of every person in the US in addition to their healthcare records. I would bet that you'd be able to determine, with high confidence, the probability of many serious health conditions years or even decades before symptoms appear. And it would completely change the manufacture and administration of medicines. It would change the course of human history. Of course, we'd totally !@#$ it up and use it to put group X, Y, and Z in camps or try to breed super soldiers.
    - hayst4ck 2y ago
      There is a lot of academic talk about how focusing on democracy rather than constitutionality (rule of law) has done us a great disservice. It turns out voting is much less important than limits on arbitrary executions of power. Everything that's good comes out of their being "just" rules for the most powerful members of society, democracy can facilitate it, but does not guarantee Rule of Law. Richard Fenyman on "cargo cult science": I think the educational and psychological studies I mentioned are examples of what I would like to call Cargo Cult Science. In the South Seas there is a Cargo Cult of people. During the war they saw airplanes land with lots of good materials, and they want the same thing to happen now. So they’ve arranged to make things like runways, to put fires along the sides of the runways, to make a wooden hut for a man to sit in, with two wooden pieces on his head like headphones and bars of bamboo sticking out like antennas—he’s the controller—and they wait for the airplanes to land. They’re doing everything right. The form is perfect. It looks exactly the way it looked before. But it doesn’t work. No airplanes land. So I call these things Cargo Cult Science, because they follow all the apparent precepts and forms of scientific investigation, but they’re missing something essential, because the planes don’t land. Democracy without Rule of Law is a cargo cult democracy. It is form without substance. It seems like it should produce good outcomes but doesn't. The planes aren't landing...
- gosub100 2y ago
  I did this for bone marrow donation. God knows what they did with my DNA sequence but if they match it, it's quite likely I'd be the only one who could help (due to the uniqueness required). It'd be an honor.
hayst4ck 2y ago
It's worth pointing out that this is a pro-corporate attack by the US/california government against citizens who have their data in 23andme. This is one more item of clear evidence that it is not the citizens government, but corporations government. This is also why democrats lose. They can't even wrangle corporate power in their own stronghold states. Politicians have the responsibility of creating legislation to protect citizens, but by abandoning that responsibility and creating an "opt-out" system, those without knowledge or who aren't paying active attention lose, and companies win. The company loses almost nothing if a handful of people opt out, and only a handful of people at most will opt out, so corporations win, the politicians continue to have the support of corporations so they win, and citizens who have things being done with their data, that they absolutely would not consent to, lose. *edit: If you did 23andMe for health information or ancestry purposes, would you consent to that data being sold to an insurance company who might raise your rates, or in a crazy world, to a background check company that would inform a potential employer of any medical conditions that might be relevant to your stability as a worker? Of course not. You would absolutely not consent to that. This policy of warning people to delete their data instead of stopping action that no informed citizen would consent to not only doesn't scale, but it is an abandonment of responsibility in order to retain corporate support (such as donations to run a campaign).
- hhh 2y ago
  What?
  - hayst4ck 2y ago
    Who should stop a company from doing things that are unethical, in this case selling genetic data to companies to use for their own ends, rather than to use data to benefit customers. The attorney general for a state as well as the legislative body passing laws that help the AG do their job has a responsibility to prevent this. So this person in a position of power, who should be stopping a blatant abuse of people's data, has abandoned that responsibility and instead told every individual, in a public statement that would be very easy to miss, to prevent the abuse of data themselves. This style of handling data is a policy like recycling, or telling people to turn off their lights to protect the planet. It distributes responsibility to individuals, for a problem that can only be meaningfully addressed through regulation.
ronnier 2y ago
> The California-based company has publicly reported that it is in financial distress and stated in securities filings that there is substantial doubt about its ability to continue as a going concern This is one reason I use signal over other texting apps -- I don't want my private messages sitting in a database waiting to be sold during a fire sale when the company goes under. Also why I try to locally host my apps such as security cameras, password manager, home automation, storage, wiki, among others
- Glyptodon 2y ago
  What do you use for home hosting security cams, storage, and PW management? Does your storage solution work for automated phone data backups?
  - nijave 2y ago
    I use Home Assistant and Frigate for security cams. I have a rack mount server with Ubuntu that acts as a NAS with NFS for ipcam video and SFTP for SwiftBackup from my phone. I don't host my own password manager but iirc you can self host Bitwarden (I use the hosted version). You can also setup Resilio or Syncthing to sync files from your phone like photos.
  - ronnier 2y ago
    WireGuard with a domain that only has private ip addresses. Caddy to handle domain certs. I use a split tunnel so my phone is always connected to my local network at home. Everything is http even with private ip addresses I use frigate and home assistant. I have unraid for storage. I use a small x86 box with openwrt for my router. I use vault warden (open source version of Bitwarden) for passwords. It’s amazing. And you can use the native Bitwarden client
Guvante 2y ago
If 23andme has an agreement with its consumers on how it will handle the data it should not matter whether they are bought that agreement should be maintained in perpetuity unless those consumers actively choose to change their agreement. After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? (I am not being critical of the AG here but instead pointing out how lax consumer protections have gotten that we even need to have this be a talking point)
- JonathonW 2y ago
  > After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? Both 23andme and Dropbox's privacy policies only require them to notify users if the privacy policy changes (no restriction on scope of those changes), so maybe we should (if Dropbox were to be sold)?
  - Guvante 2y ago
    Not legally, they can only do that if you implicitly agree by continuing to use the product. If you don't interact in a meaningful way you cannot change a contract from one side you need a new agreement. Now whether this is enforced is a different manner.
- karaterobot 2y ago
  You're right that it should not matter. That would be a great world to live in! It's not this one, though. Companies ignore these agreements all the time. Sometimes they're even caught and their wrists get slapped. More often (I believe) we just never learn the agreements have been broken in the first place. But it is a rule—almost approaching a law of nature—that companies facing financial distress will begin putting a price tag on private data they've promised never to sell. It's like the cartoon with the starving people in the life raft: they look at your data, and suddenly they don't see a legal agreement to protect it, they see a juicy drumstick. > After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? Well, opinions differ on that one too!
pmags 2y ago
I work in population genomics (non-human organisms), and myself participated in an early near-whole genome genotyping study back when microarrays were still the predominant technology (academic NOT commercial). But for nearly 20 years I've been telling my extended family NOT to participate in any large scale genotyping with 23 and Me or similar commercial companies where they retain rights to your data, anticipating that something like the current scenario would likely play out. Somehow, 23 and Me genotyping became the "gift du jour" for Xmas some years back -- I never personally understood that or why someone would want to turn over so much data to a commercial entity. This is not to say that large scale sequence information is not appropriate for *some people*. But if that's something you need, make every effort to make sure you own your own data.
- cj 2y ago
  > I never personally understood that It’s a pretty simple cost/benefit equation. For 90%+ of people, the benefit (or appeal) of seeing an ancestry report is greater than the cost (or risk) of handing over your DNA. That said, it’s definitely fair to question why more people don’t take their personal privacy seriously. The reality is companies like Google (and 23andme) simply wouldn’t exist if everyone cared as much about privacy as the HN crowd. Google exists because consumers are fine with sharing their data, for better or worse.
  - treyd 2y ago
    > The reality is companies like Google (and 23andme) simply wouldn’t exist if everyone cared as much about privacy as the HN crowd. Google exists because consumers are fine with sharing their data, for better or worse. This refrain is repeated endlessly but I've never heard a good argument as to why it must be this way and if it was any other way Google simply couldn't exist in any (ideally better) form.
    - whilenot-dev 2y ago
      Which Google product out of the many[0] do you know that doesn't scrape data? I think Google profits massively off of the ignorance of its users and is reliant on their unawareness that they're producers of actual relevant data. [0]: https://en.wikipedia.org/wiki/List_of_Google_products https://en.wikipedia.org/wiki/List_of_Google_products
levocardia 2y ago
So, what rich billionaire wants to buy the company, anonymize the data, then release it open-source? Would be a genuine boon to biohackers everywhere, privacy be damned.
- rvnx 2y ago
  Like the husband of the founder ?
- Y_Y 2y ago
  Anonymise DNA? With due respect to Poe's law, I spend a lot of talk hearing about how data can be made "anonymous" and somehow you could use it without running into problems with PII. And it's usually wishful or naive. This really takes the cake though. You could certainly aggregate the data in way that preserves some (differential) privacy. But DNA is the the least impersonal data I could imagine.
  - nukem222 2y ago
    > But DNA is the the least impersonal data I could imagine. I imagine there are far more devastating bits of PII to publish than genes, like your porn-watching habits. I don't think this is a strong rhetorical stance to defend genetic data. Contract law is kind of diseased. I don't think it's a good idea to build a society around letting people sign basic protection from corporations away.
    - Y_Y 2y ago
      For clarity, I agree completely. I don't think DNA is likely to be damaging of its own accord (unless they find your blood at a crime scene or something). What I'm getting is more that it's very identifying.
- SequoiaHope 2y ago
  I’m not well versed in issues with genetics to discuss the merits but one thing I will say is that billionaires tend not to do things like this because, I think, in order to become a billionaire you necessarily have to have a view of the world which seems to filter out a desire to give away large amounts of value. There are SO MANY social problems which billionaires are at least financially capable of solving which they do not in fact solve simply because they do not seem to think this way. One example - Bill Gates could have made sure the Covid vaccine was open source and he could have helped factories around the world tool up to make it, saving potentially millions of lives. But the way he thinks he can’t seem to imagine doing that and instead believes proprietary medicine is somehow the way. Which even if one believed it was in general, I strongly disagree that was the right solution for the acute global tragedy that was the onset of Covid around the world.
arjie 2y ago
The practice of how this does damage isn't clear to me. But I'm going to test this in the very skin-in-the-game sense. My genome (sequenced by Nebula Genomics) is available to anyone who would like it. I have raw FASTQ files which you will have to pay a nominal fee to access. Once upon a time, a friend and I decided we should launch a site where people can submit their genomes and health information so that broad population scale studies can be done. I did submit my stuff to All Of Us and so on, but I think the fact that you need to be special-cased to access the data is probably a loss. So I think it's time to revisit this whole thing. Perhaps I should make VCFs available instead. They're much smaller and may be more accessible for people. In any case, if you want my FASTQs, just email me.
- asperous 2y ago
  No singular person, it's more the value of having a large database. You visit a coffee shop, a stalker collects your dna from a fingerprint and uses the a leaked or sold database from 23andme to tie it to your identity or home address, etc. Interestingly this also works if a direct relative has used it as well.
  - dullcrisp 2y ago
    Couldn’t they find you on facebook instead of sequencing your genome?
    - Larrikin 2y ago
      Does anyone under 40 have a non locked down or an undeleted Facebook account?
  - lentil_soup 2y ago
    If a stalker already followed you into a coffee shop surely they have your name and address
- Manfred 2y ago
  A government could decide they don't like a particular phenotype and decide to visit people based on a database. Something similar happened with the harmless "what's your religion" question on census forms in the late 1930's early 1940's.
IncreasePosts 2y ago
23andme stock is down 99.12% from 5 years ago. Sheesh. What happened? Is it just not a viable business model or was it extremely mismanaged?
- deleted 2y ago
  [deleted]
- geor9e 2y ago
  Well, think about it: it was a novelty in 2013. I paid them $99, and I still have access to all of the website's features, showing my ancestry and health trivia. People who are into this sort of thing have already done it. What future revenue do they have?
  - dehrmann 2y ago
    Genetic testing might be one of the most durable goods out there.
- deleted 2y ago
  [deleted]
- janetmissed 2y ago
  There was a pretty great article a few years ago about the downfall of 23andMe (I think it was in The Atlantic), but basically they ran through all of their potential customers within a few years. It turns out that when your entire business is sequencing someone’s dna it’s hard to get repeat customers. They tried to pivot to a subscription model where they would give health advice based on your genetic sequence, but it turns out that most health information you can glean from a dna is suspect at best and next to useless most of the time.
- rchaud 2y ago
  Why would a B2C blood test company need to be publicly traded? The answer is simple: going public is a cheat code that unlocks millions in cash for deeply unprofitable companies that can sell tall tales to pension funds that need things to toss money at. Coat it in some "we're a tech company" pixie dust to seal the deal.
999900000999 2y ago
[flagged]
- nukem222 2y ago
  > You find out your 2.3% Italian? I'll admit, I'm surprised how easily race science and blood quantum experienced a mass resurgence.
  - giraffe_lady 2y ago
    I'm not, tech people have loved that shit forever.
    - rchaud 2y ago
      Yeah, this has been common dinner table topic for Americans with European ancestry, despite American society's efforts to flatten everybody's identity into "worker" and "consumer".
- yieldcrv 2y ago
  A schengen area visa would be very valuable for me, an American
  - JumpCrisscross 2y ago
    > A schengen area visa would be very valuable for me, an American I don't believe any European country accepts 23andMe results as proof of ancestry.
    - 999900000999 2y ago
      You need to have documentation of I believe a grandparent having citizenship. I can’t claim French citizenship since some of my ancestors are from Louisiana. Likewise, you can’t get tribal benefits from a 23 and Me test. I guess the only good use for this would be in a medical setting. I don’t think the science is there yet, but hypothetically, let’s just say you could run a test and determine you’re genetically incompatible with certain medicines. That would need to be done under HIPAA protection and the results should be immediately destroyed once your doctor’s able to evaluate it. I’m generally against regulation, but I’m amazed this was legal in the first place. It’s cheaper and easier to buy a lordship in Scotland. https://www.scotlandtitles.com https://www.scotlandtitles.com 100$ and it carries the same weight, without giving a for-profit company your genetic information.
fnord77 2y ago
Bonta himself is about to be indicted by the feds in relation to the Duong family/Sheng Thao corruption probe.
steelframe 2y ago
Whenever I start feeling smug about how cagey I've been about data brokers in the past, I remind myself that enough of my relatives have handed over their DNA to operations like 23andMe so as to render my efforts futile.
- thomassmith65 2y ago
  Most likely, they're also sharing photos, videos and intimate details of you on social media.
  - beng-nl 2y ago
    And have corresponded by email to/from GP using a hosted email provider..
  - globular-toast 2y ago
    Yeah, and by not participating directly yourself you just earned a tag of "non-conformist", "weirdo" or perhaps "entity that has something to hide".
- lelandfe 2y ago
  Did Facebook ever create a way for someone to delete the “shadow profiles” it builds for non-users? I have a suspicion it will entail making an account.
  - r00fus 2y ago
    I hear the tried and true approach is to make an account and poison their well with fake but somewhat realistic data and don't close it.
    - dustyharddrive 2y ago
      Why sign their limitation of liability?
- swyx 2y ago
slevis 2y ago
It would be imo worse if the information just gets lost once 23andMe shuts down. Make genome and health information open access.
Animats 2y ago
The problem, not stated, is that a bankruptcy can wipe out the obligations of a company to its customers. This includes privacy obligations.[1] Especially if the assets are sold to a company outside California or outside the US. [1] https://harvardlawreview.org/print/vol-138/data-privacy-in-bankruptcy-the-consumer-privacy-ombudsman/ https://harvardlawreview.org/print/vol-138/data-privacy-in-b...
- ajb 2y ago
  Yes. We need obligations to be able to follow personal data, by analogy with real estate (if you agree an obligation with your neighbour, for example access rights, it can be effected in such a way as to be binding against future owners. Otherwise you could get stuck without access each time they sell up. This is often set up at the point when the land is subdivided)
  - hypercube33 2y ago
    Personal data should be owned by us and a license given limiting it to the original company in its original form read entitlement only. That's the only thing I can come up with to stop this and maybe have a side benefit of killing credit companies at 7am before I've had my cup of Joe.
- Animats 2y ago
  24 hours later, the bankruptcy.
ripped_britches 2y ago
Why is it his prerogative to suggest this? Doesn’t he have better things to do?
- epistasis 2y ago
  AG stands for Attorney General. Seems like an excellent use of the position's time to me.
deleted 2y ago
[deleted]
huitzitziltzin 2y ago
The fact that 23andme is at risk as a going concern tells you what you need to know about the potential of monetizing large amounts of generic data. It turns out you can’t get much value from it. If you could, they would have. And no I don’t think all of that DNA data would be valuable to the likes of a large health insurer like Humana or Aetna either. The medical records you are imagining an insurer can link to genetic data are worth even less than these DNA sequences turned out to be worth. Sincerely, A former health economist who has worked both with tens of millions of inpatient discharge records, and (separately) a detailed survey which is complemented by genetic data.
- unyttigfjelltol 2y ago
  Candidly, given existing law in the US, the highest use an insurer could make of the data is to opt families into specialized preventative care using the DNA profiles in the database. They might make pretty decent profits taking that angle, and possibly generate significant goodwill.
  - huitzitziltzin 2y ago
    No. (Slightly longer answer: I don’t have the funds to match what someone is likely to pay for this data, but if I bought it and gave it to you for free, and also gave you all the inpatient hospital discharge abstracts in the US in a matchable form, plus whatever health data you want, plus family relationships, plus a budget for 100 PhDs, product managers, and marketing people for 5 years you couldn’t turn it into a viable product. (Indeed that is literally what 23andme tried to do for years!))
  - s1artibartfast 2y ago
    How would that make them money? Every dollar saved in preventative care is $0.15 less profit, because insurers have a fixed profit margin as a percent of total care provided, due to the ACA's 85/15 rule . The only reason to to do it would be to compete with a peer insurance company that is already doing it, resulting in less profit for both parties. The optimal strategy from the insurance profit perspective is to ban any DNA based cost saving measures for all insurance companies.
quantified 2y ago
After you go through the steps to request deletion and physical destruction of the sample, you still need to trust them, a dying concern with the desire to monetize anything remaining, to actually carry it out.
- zeroonetwothree 2y ago
  Yes well how else would it work? Are they supposed to give you root access to their servers so you can check? At some point you do have to trust someone else.
scoofy 2y ago
If only we had any actual privacy laws in the United States. I hate that I'm having my samples destroyed and removed from research. It feels wrong. But the idea that some company can quietly change the privacy terms on me is unacceptable. I would happily share my genetic data with researchers if I knew that the privacy agreement we had was irrevocable.
- zeroonetwothree 2y ago
  The linked article is literally about a privacy law that protects your data.
  - scoofy 2y ago
    Fair point...
carimura 2y ago
Sure you can delete your data, but guess what, they'll retain it anyways under "regulatory obligations". I've gone back and forth with their privacy team and this is the last response: "This is a follow-up from the 23andMe Team. To clarify, we and our laboratory vendors are bound by various legal and regulatory obligations that may necessitate retention of certain information. We want to assure you that our data retention program adheres to applicable legal requirements which can vary depending on what country or state a customer lives in, the state a contracted laboratory is located in, and any applicable federal or state licensing obligations related to the ancestry and health products we sell. We can confirm that samples and genetic testing results are deleted in accordance with applicable law and any legal retention obligation serves as a proper exception related to a data deletion request under data privacy laws."
- beacon294 2y ago
  It seems like you can sue them. This is purely legal's domain.
- partygirl69 2y ago
  What did you ask them to get this response? E.g. did you request to delete your data, then followed up over email to confirm it was deleted? Also, are you based in California?
  - carimura 2y ago
    Yes California. I've been asking what data is being retained per their privacy policy and here is the much longer response: "Your Genetic Information, date of birth, and sex will be retained by 23andMe and our third party genotyping laboratory as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists accreditation requirements. It is important to understand that the information stored is distinct from the raw genotype data available within your account. The raw data we receive from the lab has not been processed by our interpretation software to produce your individual-level genotype data (in your account). You can read more about our retention requirements in the retention of personal information section of our Privacy Statement."
Pozzi1 2y ago
[flagged]
jrm4 2y ago
A simple rule. When a company promises to never do a thing (e.g. be careless or sell off important data like this,) but there is no legal consequence or assurance, that company -- or some different company related to it -- is definitely, absolutely, going to do that thing.
sudoshred 2y ago
Reminiscent of the movie Gattaca.
vishakh82 2y ago
We're launching a fully encrypted option for personal genomics called Monadic DNA. https://monadicdna.com/ https://monadicdna.com/ We use fully homomorphic encryption to ensure only you can see your data and your results. The app will be live in a few weeks.
- dopa42365 2y ago
  you do not redeem today, saar
teeray 2y ago
This sucks the most for everyone that never consented to genetic data collection, but they have it all anyway. If you were the only holdout in your family to not use 23andme, it doesn’t really matter since they know a lot about you anyway. Genetic information is fundamentally shared among a group, so you shouldn’t really be able to consent to disclose it in a way that allows a company to do whatever it wants with it. They haven’t obtained all of the consent.
robwwilliams 2y ago
I do not understand the purpose of this alert. There are no explicit warnings, just a premonition. The alert merely says what all users should know that their genetic and survey data can be deleted if they request it to be deleted. That obligation to delete user data is persistent and will apply to any buyer of 23andMe. Or am I wrong? What is the AG of California intimating that the data is now at risk of being released into the wild or worse? That is how some will respond to this alert. What many customers may not know is that they can also download these valuable genotype data and store locally if they wish. Using these data is not easy, but it is possible with a but of research and help. Those who have used 23andMe should and can expect the security of their data to be maintained by the company, and that obligation would apply to any purchaser.
No1 2y ago
I have been wanting to get my genome sequenced for years, and had been thinking 23andme might be one of the better options because of the possibility of invoking the CCPA to get my data deleted after sequencing. Never did it because I wonder if they sell your info to some third party the second it comes off the sequencer, and also because I'm skeptical that they would fully comply with a deletion request. For people who would like to get their DNA sequenced but are actually concerned about privacy, are there any better options?
- ekianjo 2y ago
  Until you can do it with a kit at home, probably none
- EGreg 2y ago
  I guess it's just my programming instincts, but I just immediately think of the possible worst case scenarios and how strong are the guarantees they're prevented. Dividing by X? I immediately think what if X is zero. Dereferencing X.Y ? I think what if X is null / nil. And so on. So when it came to the DNA, I was hesitant to do it, since your DNA can wind up in all kinds of databases. And it turns out I was probably right. What you could have done is sent in the information anonymously, or under a fictitious name. You can still use an email address and log in and see the results. Or you could use someone else's name from another country (with their permission), but then if that person ever gets in trouble, the DNA evidence might somehow implicate you (such as the guy with the last name NULL who got a lot of parking tickets LOL). A couple months ago I actually did submit with heritage.com and 23andme for a friend, so I think there was no place where you had to provide ID or something.
- sandos 2y ago
  "Sequencing" make it sound like you want 100% of your SNPs scanned, that is not something that 23andme does afaik. This is a "shotgun" chip approach which sparsely samples your genes in an economic way. They will concentrate on areas of more interest and so on, in a way that is useful for genealogy for example.
deleted 2y ago
[deleted]
ashoeafoot 2y ago
Thank you to everyone who sold out their families genetics, you are uninsureable for all found so far genetic diseases , sign here, here and here.
sMarsIntruder 2y ago
Early user. IIRC it was kind of early ‘10. Never gave consent for studies and asked for GDPR complete data removal I guess 5/6 yrs ago. Meanwhile I learned about privacy and promised myself to never get into this “things” again.
svanschalkwyk 2y ago
Trying to delete and no date matches my birthday. How convenient.
josefritzishere 2y ago
I would advise urgency. https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-23andMe-Account-Closure https://customercare.23andme.com/hc/en-us/articles/212170688...
deleted 2y ago
[deleted]
gracelandon 2y ago
[flagged]

"Why would you spit into a tube then mail it to the internet?" -- Bill Burr

toomuchtodo 2y ago
Because I was curious. (submitted a data deletion request)
- qqqult 2y ago
  is_deleted = True update is in progress
  - toomuchtodo 2y ago
    And if it turns out that’s the case, I’ll file suit and establish a class action on my own dime. That’s how the gears turn and recourse made available. Actions have consequences.
    - dandrew5 2y ago
      How would you know? I also submitted a deletion request to that airport identity service Clear to avoid missing a flight one time. I received an email "Your request has been received" and nothing else. Is there a way we can validate our information is actually deleted?
      - toomuchtodo 2y ago
        It will either be disclosed in bankruptcy proceedings, and failing that, finding a whistleblower who has access to the data and can/will attest to the fraud.
hayst4ck 2y ago
With regulations, it really is the type of thing that would benefit a lot of people as well as biological science as a whole in America.
- pmags 2y ago
  All of Us -- https://allofus.nih.gov/ https://allofus.nih.gov/ -- and similar efforts benefit biological science as a whole. 23 and Me not so much...
- rchaud 2y ago
  If it's so valuable, companies can pay you for it, just as blood banks do for plasma donations. 23andme are double dipping by charging for these tests and turning around to sell the data for drug discovery research or wherever it goes.
- themagician 2y ago
  It's actually wild to imagine what could be done, with current compute power, if you had the full genome of every person in the US in addition to their healthcare records. I would bet that you'd be able to determine, with high confidence, the probability of many serious health conditions years or even decades before symptoms appear. And it would completely change the manufacture and administration of medicines. It would change the course of human history. Of course, we'd totally !@#$ it up and use it to put group X, Y, and Z in camps or try to breed super soldiers.
  - hayst4ck 2y ago
    There is a lot of academic talk about how focusing on democracy rather than constitutionality (rule of law) has done us a great disservice. It turns out voting is much less important than limits on arbitrary executions of power. Everything that's good comes out of their being "just" rules for the most powerful members of society, democracy can facilitate it, but does not guarantee Rule of Law. Richard Fenyman on "cargo cult science": I think the educational and psychological studies I mentioned are examples of what I would like to call Cargo Cult Science. In the South Seas there is a Cargo Cult of people. During the war they saw airplanes land with lots of good materials, and they want the same thing to happen now. So they’ve arranged to make things like runways, to put fires along the sides of the runways, to make a wooden hut for a man to sit in, with two wooden pieces on his head like headphones and bars of bamboo sticking out like antennas—he’s the controller—and they wait for the airplanes to land. They’re doing everything right. The form is perfect. It looks exactly the way it looked before. But it doesn’t work. No airplanes land. So I call these things Cargo Cult Science, because they follow all the apparent precepts and forms of scientific investigation, but they’re missing something essential, because the planes don’t land. Democracy without Rule of Law is a cargo cult democracy. It is form without substance. It seems like it should produce good outcomes but doesn't. The planes aren't landing...
gosub100 2y ago
I did this for bone marrow donation. God knows what they did with my DNA sequence but if they match it, it's quite likely I'd be the only one who could help (due to the uniqueness required). It'd be an honor.

It's worth pointing out that this is a pro-corporate attack by the US/california government against citizens who have their data in 23andme. This is one more item of clear evidence that it is not the citizens government, but corporations government. This is also why democrats lose. They can't even wrangle corporate power in their own stronghold states. Politicians have the responsibility of creating legislation to protect citizens, but by abandoning that responsibility and creating an "opt-out" system, those without knowledge or who aren't paying active attention lose, and companies win. The company loses almost nothing if a handful of people opt out, and only a handful of people at most will opt out, so corporations win, the politicians continue to have the support of corporations so they win, and citizens who have things being done with their data, that they absolutely would not consent to, lose. *edit: If you did 23andMe for health information or ancestry purposes, would you consent to that data being sold to an insurance company who might raise your rates, or in a crazy world, to a background check company that would inform a potential employer of any medical conditions that might be relevant to your stability as a worker? Of course not. You would absolutely not consent to that. This policy of warning people to delete their data instead of stopping action that no informed citizen would consent to not only doesn't scale, but it is an abandonment of responsibility in order to retain corporate support (such as donations to run a campaign).

hhh 2y ago
What?
- hayst4ck 2y ago
  Who should stop a company from doing things that are unethical, in this case selling genetic data to companies to use for their own ends, rather than to use data to benefit customers. The attorney general for a state as well as the legislative body passing laws that help the AG do their job has a responsibility to prevent this. So this person in a position of power, who should be stopping a blatant abuse of people's data, has abandoned that responsibility and instead told every individual, in a public statement that would be very easy to miss, to prevent the abuse of data themselves. This style of handling data is a policy like recycling, or telling people to turn off their lights to protect the planet. It distributes responsibility to individuals, for a problem that can only be meaningfully addressed through regulation.

ronnier 2y ago

> The California-based company has publicly reported that it is in financial distress and stated in securities filings that there is substantial doubt about its ability to continue as a going concern This is one reason I use signal over other texting apps -- I don't want my private messages sitting in a database waiting to be sold during a fire sale when the company goes under. Also why I try to locally host my apps such as security cameras, password manager, home automation, storage, wiki, among others

Glyptodon 2y ago
What do you use for home hosting security cams, storage, and PW management? Does your storage solution work for automated phone data backups?
- nijave 2y ago
  I use Home Assistant and Frigate for security cams. I have a rack mount server with Ubuntu that acts as a NAS with NFS for ipcam video and SFTP for SwiftBackup from my phone. I don't host my own password manager but iirc you can self host Bitwarden (I use the hosted version). You can also setup Resilio or Syncthing to sync files from your phone like photos.
- ronnier 2y ago
  WireGuard with a domain that only has private ip addresses. Caddy to handle domain certs. I use a split tunnel so my phone is always connected to my local network at home. Everything is http even with private ip addresses I use frigate and home assistant. I have unraid for storage. I use a small x86 box with openwrt for my router. I use vault warden (open source version of Bitwarden) for passwords. It’s amazing. And you can use the native Bitwarden client

Guvante 2y ago

If 23andme has an agreement with its consumers on how it will handle the data it should not matter whether they are bought that agreement should be maintained in perpetuity unless those consumers actively choose to change their agreement. After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? (I am not being critical of the AG here but instead pointing out how lax consumer protections have gotten that we even need to have this be a talking point)

JonathonW 2y ago
> After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? Both 23andme and Dropbox's privacy policies only require them to notify users if the privacy policy changes (no restriction on scope of those changes), so maybe we should (if Dropbox were to be sold)?
- Guvante 2y ago
  Not legally, they can only do that if you implicitly agree by continuing to use the product. If you don't interact in a meaningful way you cannot change a contract from one side you need a new agreement. Now whether this is enforced is a different manner.
karaterobot 2y ago
You're right that it should not matter. That would be a great world to live in! It's not this one, though. Companies ignore these agreements all the time. Sometimes they're even caught and their wrists get slapped. More often (I believe) we just never learn the agreements have been broken in the first place. But it is a rule—almost approaching a law of nature—that companies facing financial distress will begin putting a price tag on private data they've promised never to sell. It's like the cartoon with the starving people in the life raft: they look at your data, and suddenly they don't see a legal agreement to protect it, they see a juicy drumstick. > After all we wouldn't talk about Dropbox being sold resulting in ransacking of your personal data why is that in the conversation with 23andme? Well, opinions differ on that one too!

pmags 2y ago

I work in population genomics (non-human organisms), and myself participated in an early near-whole genome genotyping study back when microarrays were still the predominant technology (academic NOT commercial). But for nearly 20 years I've been telling my extended family NOT to participate in any large scale genotyping with 23 and Me or similar commercial companies where they retain rights to your data, anticipating that something like the current scenario would likely play out. Somehow, 23 and Me genotyping became the "gift du jour" for Xmas some years back -- I never personally understood that or why someone would want to turn over so much data to a commercial entity. This is not to say that large scale sequence information is not appropriate for *some people*. But if that's something you need, make every effort to make sure you own your own data.

cj 2y ago
> I never personally understood that It’s a pretty simple cost/benefit equation. For 90%+ of people, the benefit (or appeal) of seeing an ancestry report is greater than the cost (or risk) of handing over your DNA. That said, it’s definitely fair to question why more people don’t take their personal privacy seriously. The reality is companies like Google (and 23andme) simply wouldn’t exist if everyone cared as much about privacy as the HN crowd. Google exists because consumers are fine with sharing their data, for better or worse.
- treyd 2y ago
  > The reality is companies like Google (and 23andme) simply wouldn’t exist if everyone cared as much about privacy as the HN crowd. Google exists because consumers are fine with sharing their data, for better or worse. This refrain is repeated endlessly but I've never heard a good argument as to why it must be this way and if it was any other way Google simply couldn't exist in any (ideally better) form.
  - whilenot-dev 2y ago
    Which Google product out of the many[0] do you know that doesn't scrape data? I think Google profits massively off of the ignorance of its users and is reliant on their unawareness that they're producers of actual relevant data. [0]: https://en.wikipedia.org/wiki/List_of_Google_products https://en.wikipedia.org/wiki/List_of_Google_products

levocardia 2y ago

So, what rich billionaire wants to buy the company, anonymize the data, then release it open-source? Would be a genuine boon to biohackers everywhere, privacy be damned.

rvnx 2y ago
Like the husband of the founder ?
Y_Y 2y ago
Anonymise DNA? With due respect to Poe's law, I spend a lot of talk hearing about how data can be made "anonymous" and somehow you could use it without running into problems with PII. And it's usually wishful or naive. This really takes the cake though. You could certainly aggregate the data in way that preserves some (differential) privacy. But DNA is the the least impersonal data I could imagine.
- nukem222 2y ago
  > But DNA is the the least impersonal data I could imagine. I imagine there are far more devastating bits of PII to publish than genes, like your porn-watching habits. I don't think this is a strong rhetorical stance to defend genetic data. Contract law is kind of diseased. I don't think it's a good idea to build a society around letting people sign basic protection from corporations away.
  - Y_Y 2y ago
    For clarity, I agree completely. I don't think DNA is likely to be damaging of its own accord (unless they find your blood at a crime scene or something). What I'm getting is more that it's very identifying.
SequoiaHope 2y ago
I’m not well versed in issues with genetics to discuss the merits but one thing I will say is that billionaires tend not to do things like this because, I think, in order to become a billionaire you necessarily have to have a view of the world which seems to filter out a desire to give away large amounts of value. There are SO MANY social problems which billionaires are at least financially capable of solving which they do not in fact solve simply because they do not seem to think this way. One example - Bill Gates could have made sure the Covid vaccine was open source and he could have helped factories around the world tool up to make it, saving potentially millions of lives. But the way he thinks he can’t seem to imagine doing that and instead believes proprietary medicine is somehow the way. Which even if one believed it was in general, I strongly disagree that was the right solution for the acute global tragedy that was the onset of Covid around the world.

arjie 2y ago

The practice of how this does damage isn't clear to me. But I'm going to test this in the very skin-in-the-game sense. My genome (sequenced by Nebula Genomics) is available to anyone who would like it. I have raw FASTQ files which you will have to pay a nominal fee to access. Once upon a time, a friend and I decided we should launch a site where people can submit their genomes and health information so that broad population scale studies can be done. I did submit my stuff to All Of Us and so on, but I think the fact that you need to be special-cased to access the data is probably a loss. So I think it's time to revisit this whole thing. Perhaps I should make VCFs available instead. They're much smaller and may be more accessible for people. In any case, if you want my FASTQs, just email me.

asperous 2y ago
No singular person, it's more the value of having a large database. You visit a coffee shop, a stalker collects your dna from a fingerprint and uses the a leaked or sold database from 23andme to tie it to your identity or home address, etc. Interestingly this also works if a direct relative has used it as well.
- dullcrisp 2y ago
  Couldn’t they find you on facebook instead of sequencing your genome?
  - Larrikin 2y ago
    Does anyone under 40 have a non locked down or an undeleted Facebook account?
- lentil_soup 2y ago
  If a stalker already followed you into a coffee shop surely they have your name and address
Manfred 2y ago
A government could decide they don't like a particular phenotype and decide to visit people based on a database. Something similar happened with the harmless "what's your religion" question on census forms in the late 1930's early 1940's.

IncreasePosts 2y ago

23andme stock is down 99.12% from 5 years ago. Sheesh. What happened? Is it just not a viable business model or was it extremely mismanaged?

deleted 2y ago
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geor9e 2y ago
Well, think about it: it was a novelty in 2013. I paid them $99, and I still have access to all of the website's features, showing my ancestry and health trivia. People who are into this sort of thing have already done it. What future revenue do they have?
- dehrmann 2y ago
  Genetic testing might be one of the most durable goods out there.
deleted 2y ago
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janetmissed 2y ago
There was a pretty great article a few years ago about the downfall of 23andMe (I think it was in The Atlantic), but basically they ran through all of their potential customers within a few years. It turns out that when your entire business is sequencing someone’s dna it’s hard to get repeat customers. They tried to pivot to a subscription model where they would give health advice based on your genetic sequence, but it turns out that most health information you can glean from a dna is suspect at best and next to useless most of the time.
rchaud 2y ago
Why would a B2C blood test company need to be publicly traded? The answer is simple: going public is a cheat code that unlocks millions in cash for deeply unprofitable companies that can sell tall tales to pension funds that need things to toss money at. Coat it in some "we're a tech company" pixie dust to seal the deal.

999900000999 2y ago

[flagged]

nukem222 2y ago
> You find out your 2.3% Italian? I'll admit, I'm surprised how easily race science and blood quantum experienced a mass resurgence.
- giraffe_lady 2y ago
  I'm not, tech people have loved that shit forever.
  - rchaud 2y ago
    Yeah, this has been common dinner table topic for Americans with European ancestry, despite American society's efforts to flatten everybody's identity into "worker" and "consumer".
yieldcrv 2y ago
A schengen area visa would be very valuable for me, an American
- JumpCrisscross 2y ago
  > A schengen area visa would be very valuable for me, an American I don't believe any European country accepts 23andMe results as proof of ancestry.
  - 999900000999 2y ago
    You need to have documentation of I believe a grandparent having citizenship. I can’t claim French citizenship since some of my ancestors are from Louisiana. Likewise, you can’t get tribal benefits from a 23 and Me test. I guess the only good use for this would be in a medical setting. I don’t think the science is there yet, but hypothetically, let’s just say you could run a test and determine you’re genetically incompatible with certain medicines. That would need to be done under HIPAA protection and the results should be immediately destroyed once your doctor’s able to evaluate it. I’m generally against regulation, but I’m amazed this was legal in the first place. It’s cheaper and easier to buy a lordship in Scotland. https://www.scotlandtitles.com https://www.scotlandtitles.com 100$ and it carries the same weight, without giving a for-profit company your genetic information.

fnord77 2y ago

Bonta himself is about to be indicted by the feds in relation to the Duong family/Sheng Thao corruption probe.

steelframe 2y ago

Whenever I start feeling smug about how cagey I've been about data brokers in the past, I remind myself that enough of my relatives have handed over their DNA to operations like 23andMe so as to render my efforts futile.

thomassmith65 2y ago
Most likely, they're also sharing photos, videos and intimate details of you on social media.
- beng-nl 2y ago
  And have corresponded by email to/from GP using a hosted email provider..
- globular-toast 2y ago
  Yeah, and by not participating directly yourself you just earned a tag of "non-conformist", "weirdo" or perhaps "entity that has something to hide".
lelandfe 2y ago
Did Facebook ever create a way for someone to delete the “shadow profiles” it builds for non-users? I have a suspicion it will entail making an account.
- r00fus 2y ago
  I hear the tried and true approach is to make an account and poison their well with fake but somewhat realistic data and don't close it.
  - dustyharddrive 2y ago
    Why sign their limitation of liability?
swyx 2y ago

slevis 2y ago

It would be imo worse if the information just gets lost once 23andMe shuts down. Make genome and health information open access.

Animats 2y ago

The problem, not stated, is that a bankruptcy can wipe out the obligations of a company to its customers. This includes privacy obligations.[1] Especially if the assets are sold to a company outside California or outside the US. [1] https://harvardlawreview.org/print/vol-138/data-privacy-in-bankruptcy-the-consumer-privacy-ombudsman/ https://harvardlawreview.org/print/vol-138/data-privacy-in-b...

ajb 2y ago
Yes. We need obligations to be able to follow personal data, by analogy with real estate (if you agree an obligation with your neighbour, for example access rights, it can be effected in such a way as to be binding against future owners. Otherwise you could get stuck without access each time they sell up. This is often set up at the point when the land is subdivided)
- hypercube33 2y ago
  Personal data should be owned by us and a license given limiting it to the original company in its original form read entitlement only. That's the only thing I can come up with to stop this and maybe have a side benefit of killing credit companies at 7am before I've had my cup of Joe.
Animats 2y ago
24 hours later, the bankruptcy.

ripped_britches 2y ago

Why is it his prerogative to suggest this? Doesn’t he have better things to do?

epistasis 2y ago
AG stands for Attorney General. Seems like an excellent use of the position's time to me.

deleted 2y ago

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huitzitziltzin 2y ago

The fact that 23andme is at risk as a going concern tells you what you need to know about the potential of monetizing large amounts of generic data. It turns out you can’t get much value from it. If you could, they would have. And no I don’t think all of that DNA data would be valuable to the likes of a large health insurer like Humana or Aetna either. The medical records you are imagining an insurer can link to genetic data are worth even less than these DNA sequences turned out to be worth. Sincerely, A former health economist who has worked both with tens of millions of inpatient discharge records, and (separately) a detailed survey which is complemented by genetic data.

unyttigfjelltol 2y ago
Candidly, given existing law in the US, the highest use an insurer could make of the data is to opt families into specialized preventative care using the DNA profiles in the database. They might make pretty decent profits taking that angle, and possibly generate significant goodwill.
- huitzitziltzin 2y ago
  No. (Slightly longer answer: I don’t have the funds to match what someone is likely to pay for this data, but if I bought it and gave it to you for free, and also gave you all the inpatient hospital discharge abstracts in the US in a matchable form, plus whatever health data you want, plus family relationships, plus a budget for 100 PhDs, product managers, and marketing people for 5 years you couldn’t turn it into a viable product. (Indeed that is literally what 23andme tried to do for years!))
- s1artibartfast 2y ago
  How would that make them money? Every dollar saved in preventative care is $0.15 less profit, because insurers have a fixed profit margin as a percent of total care provided, due to the ACA's 85/15 rule . The only reason to to do it would be to compete with a peer insurance company that is already doing it, resulting in less profit for both parties. The optimal strategy from the insurance profit perspective is to ban any DNA based cost saving measures for all insurance companies.

quantified 2y ago

After you go through the steps to request deletion and physical destruction of the sample, you still need to trust them, a dying concern with the desire to monetize anything remaining, to actually carry it out.

zeroonetwothree 2y ago
Yes well how else would it work? Are they supposed to give you root access to their servers so you can check? At some point you do have to trust someone else.

scoofy 2y ago

If only we had any actual privacy laws in the United States. I hate that I'm having my samples destroyed and removed from research. It feels wrong. But the idea that some company can quietly change the privacy terms on me is unacceptable. I would happily share my genetic data with researchers if I knew that the privacy agreement we had was irrevocable.

zeroonetwothree 2y ago
The linked article is literally about a privacy law that protects your data.
- scoofy 2y ago
  Fair point...

carimura 2y ago

Sure you can delete your data, but guess what, they'll retain it anyways under "regulatory obligations". I've gone back and forth with their privacy team and this is the last response: "This is a follow-up from the 23andMe Team. To clarify, we and our laboratory vendors are bound by various legal and regulatory obligations that may necessitate retention of certain information. We want to assure you that our data retention program adheres to applicable legal requirements which can vary depending on what country or state a customer lives in, the state a contracted laboratory is located in, and any applicable federal or state licensing obligations related to the ancestry and health products we sell. We can confirm that samples and genetic testing results are deleted in accordance with applicable law and any legal retention obligation serves as a proper exception related to a data deletion request under data privacy laws."

beacon294 2y ago
It seems like you can sue them. This is purely legal's domain.
partygirl69 2y ago
What did you ask them to get this response? E.g. did you request to delete your data, then followed up over email to confirm it was deleted? Also, are you based in California?
- carimura 2y ago
  Yes California. I've been asking what data is being retained per their privacy policy and here is the much longer response: "Your Genetic Information, date of birth, and sex will be retained by 23andMe and our third party genotyping laboratory as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists accreditation requirements. It is important to understand that the information stored is distinct from the raw genotype data available within your account. The raw data we receive from the lab has not been processed by our interpretation software to produce your individual-level genotype data (in your account). You can read more about our retention requirements in the retention of personal information section of our Privacy Statement."

Pozzi1 2y ago

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jrm4 2y ago

A simple rule. When a company promises to never do a thing (e.g. be careless or sell off important data like this,) but there is no legal consequence or assurance, that company -- or some different company related to it -- is definitely, absolutely, going to do that thing.

sudoshred 2y ago

Reminiscent of the movie Gattaca.

vishakh82 2y ago

We're launching a fully encrypted option for personal genomics called Monadic DNA. https://monadicdna.com/ https://monadicdna.com/ We use fully homomorphic encryption to ensure only you can see your data and your results. The app will be live in a few weeks.

dopa42365 2y ago
you do not redeem today, saar

teeray 2y ago

This sucks the most for everyone that never consented to genetic data collection, but they have it all anyway. If you were the only holdout in your family to not use 23andme, it doesn’t really matter since they know a lot about you anyway. Genetic information is fundamentally shared among a group, so you shouldn’t really be able to consent to disclose it in a way that allows a company to do whatever it wants with it. They haven’t obtained all of the consent.

robwwilliams 2y ago

I do not understand the purpose of this alert. There are no explicit warnings, just a premonition. The alert merely says what all users should know that their genetic and survey data can be deleted if they request it to be deleted. That obligation to delete user data is persistent and will apply to any buyer of 23andMe. Or am I wrong? What is the AG of California intimating that the data is now at risk of being released into the wild or worse? That is how some will respond to this alert. What many customers may not know is that they can also download these valuable genotype data and store locally if they wish. Using these data is not easy, but it is possible with a but of research and help. Those who have used 23andMe should and can expect the security of their data to be maintained by the company, and that obligation would apply to any purchaser.

No1 2y ago

I have been wanting to get my genome sequenced for years, and had been thinking 23andme might be one of the better options because of the possibility of invoking the CCPA to get my data deleted after sequencing. Never did it because I wonder if they sell your info to some third party the second it comes off the sequencer, and also because I'm skeptical that they would fully comply with a deletion request. For people who would like to get their DNA sequenced but are actually concerned about privacy, are there any better options?

ekianjo 2y ago
Until you can do it with a kit at home, probably none
EGreg 2y ago
I guess it's just my programming instincts, but I just immediately think of the possible worst case scenarios and how strong are the guarantees they're prevented. Dividing by X? I immediately think what if X is zero. Dereferencing X.Y ? I think what if X is null / nil. And so on. So when it came to the DNA, I was hesitant to do it, since your DNA can wind up in all kinds of databases. And it turns out I was probably right. What you could have done is sent in the information anonymously, or under a fictitious name. You can still use an email address and log in and see the results. Or you could use someone else's name from another country (with their permission), but then if that person ever gets in trouble, the DNA evidence might somehow implicate you (such as the guy with the last name NULL who got a lot of parking tickets LOL). A couple months ago I actually did submit with heritage.com and 23andme for a friend, so I think there was no place where you had to provide ID or something.
sandos 2y ago
"Sequencing" make it sound like you want 100% of your SNPs scanned, that is not something that 23andme does afaik. This is a "shotgun" chip approach which sparsely samples your genes in an economic way. They will concentrate on areas of more interest and so on, in a way that is useful for genealogy for example.

deleted 2y ago

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ashoeafoot 2y ago

Thank you to everyone who sold out their families genetics, you are uninsureable for all found so far genetic diseases , sign here, here and here.

sMarsIntruder 2y ago

Early user. IIRC it was kind of early ‘10. Never gave consent for studies and asked for GDPR complete data removal I guess 5/6 yrs ago. Meanwhile I learned about privacy and promised myself to never get into this “things” again.

svanschalkwyk 2y ago

Trying to delete and no date matches my birthday. How convenient.

josefritzishere 2y ago

I would advise urgency. https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-23andMe-Account-Closure https://customercare.23andme.com/hc/en-us/articles/212170688...

deleted 2y ago

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gracelandon 2y ago

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