[HN Gopher] California Attorney General issues consumer alert fo...
___________________________________________________________________
California Attorney General issues consumer alert for 23andMe
customers
Author : thoughtpeddler
Score : 221 points
Date : 2025-03-22 17:55 UTC (5 hours ago)
(HTM) web link (oag.ca.gov)
(TXT) w3m dump (oag.ca.gov)
| timewizard wrote:
| "Why would you spit into a tube then mail it to the internet?"
|
| -- Bill Burr
| toomuchtodo wrote:
| Because I was curious.
|
| (submitted a data deletion request)
| qqqult wrote:
| is_deleted = True update is in progress
| toomuchtodo wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| All of Us -- https://allofus.nih.gov/ -- and similar efforts
| benefit biological science as a whole.
|
| 23 and Me not so much...
| rchaud wrote:
| 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.
| gosub100 wrote:
| 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 wrote:
| 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 wrote:
| What?
| hayst4ck wrote:
| 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.
| derektank wrote:
| You said it yourself, the AG can only enforce laws that the
| legislature and governor pass. Calling the AG's statement a
| corporate attack seems needlessly inflammatory when he
| doesn't have the authority to change the law himself.
| hayst4ck wrote:
| AG exists as part of a system. An AG should be working
| with a legislative body to give the AG the tools the AG
| office needs to do their job.
|
| This is abandonment of responsibility because challenging
| corporate power results in reduced corporate backing.
| This is corporate <-> political alignment against
| citizens manifested.
| toomuchtodo wrote:
| The notice is pro consumer, informing citizens of their rights
| to delete their data from a private company database.
| hayst4ck wrote:
| It's not. It is a pro-consumer Trojan horse. It appears to be
| pro-consumer, but the vast majority of 23andMe customers will
| be harmed by the AG abandoning their responsibility to
| protect the public through direct action against 23andMe.
|
| It's not even your own data. If family members used 23andMe
| and don't see this notice, then your genetic data is still
| part of 23andMe whether you like it or not.
| Henchman21 wrote:
| Perhaps said AG has come to the conclusion that litigation
| would be fruitless and that warning the public has the most
| upside for the public?
|
| Also it seems you've made this political because Democrats
| and California exist I guess? They are Big Scary Monsters
| for conservatives I suppose? I don't really get it and the
| point you're attempting to make seems based on a
| misreading.
| hayst4ck wrote:
| I vote democrat. I really do, but I am upset with
| democrats because they aren't crafting a world we want to
| live in and they will take any excuse they can to do
| nothing or something close to nothing instead of actually
| doing something.
|
| One of the reasons democrat don't get voted for is
| because they are incapable of governance even in their
| own strongholds because they engage in the conflict of
| interest of taking corporate donations. When a politician
| acts against a citizen, there is no consequence. When a
| politician acts against a corporation, donations are
| reduced or transferred to their opponents.
|
| Before a general election is a primary, and before a
| primary is fundraising. During fundraising, which acts as
| a filter for candidates, and is therefore a form of
| election, money votes first, which is why we have a
| country that feels like politicians represent
| corporations (they do, corporations vote first by voting
| with money), rather than people.
| Henchman21 wrote:
| Well said, and I agree generally. I'm not happy with the
| political situation in the US either. But this still
| seems like a very pro-consumer action taken by the AG.
| Perhaps not as pro-consumer as suing them into non-
| existence and destroying their (our?) data.
|
| But honestly the Dems have been out-played at every
| level. I suspect we're going to have to leave them behind
| if we wish to fix what ails us in this country.
|
| But also as people constantly remind me when I am upset:
| the thing you're upset about is only tangentially
| relevant. :)
| hayst4ck wrote:
| My core point is that this has the appearance of action
| taken against 23andMe, but not the substance of action.
| armada651 wrote:
| You're assuming it is within the AG's power to force
| 23andMe to destroy their data, however they can only
| enforce existing laws. The only law that can force 23andMe
| to destroy their data requires a request from the consumer.
| Thus this is less an abandoning of responsibility and more
| like a desperate cry for action.
| dboreham wrote:
| AG could have chosen to inform the public about this and
| suggest they in future vote for candidates offering
| privacy enforcing platforms.
| hayst4ck wrote:
| As we've discovered with the current federal
| administration, there is what's in your power (what you
| can actually do) and there is what's in your power (a
| convenient excuse not to take decisive action).
|
| The AG isn't "playing the game" because many of these
| people who hold office are participants in a system of
| patronage by people who want de-regulation or regulatory
| capture.
|
| edit: "Norms" is a word that has started to be commonly
| used to describe situations in which someone was allowed
| to do something but it was generally considered against
| the unwritten rules.
|
| Norms is a word that is used to defend inaction even
| though action is possible, and you'll notice one side
| dis-empowers themselves by conflating the idea of against
| norms with being against the rules.
| gosub100 wrote:
| > They can't even wrangle corporate power in their own
| stronghold states.
|
| Or even darker: they never represented the people (demos) in
| the first place?
| hayst4ck wrote:
| They don't and they can't as long as corporate backing is
| their major source of funding.
|
| Not to say republicans represent people either, republicans
| unapologetically back unchecked corporate power. Democrats
| try to serve two masters.
| derektank wrote:
| Individual contributions, both large and small, are
| together by far the largest source of funding for campaign
| spending at the federal level. It's certainly possible that
| this is different at the level of the California state
| legislature but I see no reason to think it is without
| evidence to the contrary.
|
| https://www.opensecrets.org/elections-overview/where-the-
| mon...
| hayst4ck wrote:
| Here is a Harvard law professor and tech darling (of
| creative commons), Lawrence Lessig, rebutting your
| overall point.
|
| https://www.youtube.com/watch?v=mw2z9lV3W1g
|
| Summary: It feels like we have a government that governs
| on behalf of those with money because those with money
| vote first in the fundraising "election" that happens
| even before a primary election. More money _is_ more
| votes in the "election" that mattes the most. Those with
| money get to filter candidates first.
|
| edit: Just because money comes from an individual and not
| directly from a corporation doesn't mean it isn't a pro-
| corporate/"corporate" contribution.
| Glyptodon wrote:
| I'm not sure I know enough to about CA AG's options to strongly
| agree or disagree with your point, but I think the way you've
| written about it is going to be confusing/misunderstood by the
| average person just reading through comments.
| hayst4ck wrote:
| > CA AG's options
|
| That's a framing that contains its own defeat.
|
| Republicans and corporations don't cage themselves by their
| options, they give themselves options. They work towards and
| achieve their goals despite "resistance."
|
| A government that doesn't function de-legitimizes itself.
| derektank wrote:
| A government that doesn't adhere to a consistent framework
| of rules and laws ultimately devolves into some fashion of
| personalist dictatorship. Now, laws should not be set in
| stone and governance can be made more permissive to afford
| a lot of personal discretion to elected leaders, and maybe
| they should be, but ignoring the legal constraints that
| exist today is basically arguing that might makes right.
| ronnier wrote:
| > 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 wrote:
| What do you use for home hosting security cams, storage, and PW
| management? Does your storage solution work for automated phone
| data backups?
| nijave wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| > 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)?
| karaterobot wrote:
| 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 wrote:
| 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 wrote:
| > 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 wrote:
| > 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 wrote:
| 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
| rchaud wrote:
| Google the search engine could exist without being a
| privacy pest. But once Google bought DoubleClick in 2002
| and made their ad delivery platform their own, going down
| the panopticon path became inevitable.
| nukem222 wrote:
| I agree generally, but I was under the impression they
| had explicitly committed to ads over other revenue forms
| much earlier. Importantly, there was a point in Google's
| history where they weren't committed to this, and the
| internet would look a lot different had they not just
| determined ads would be sufficient for their business
| model.
|
| Curiously, they had a solution of sorts in a program
| where you could basically bid for your own ad buys to
| remove ads from pages. For some reason they shuttered
| this program down. I didn't even know it existed until
| after it was gone, frustratingly. I thought it was a neat
| way to allow the industry bridge to other funding models.
|
| (Or perhaps such a business model relies on tracking
| that's been deemed invasive. Who knows.)
| eek2121 wrote:
| Agreed.
| nolist_policy wrote:
| Google makes about $3 per user per month in ad revenue[0].
| With VAT and transfer costs that makes a equivalent
| subscription maybe $5 per month?
|
| (Too much for my taste.)
|
| Then you have to factor in that (far) fewer users are going
| to use/pay for their products if it's a subscription.
|
| It's a though calculation for sure.
|
| [0] https://thenextweb.com/news/heres-how-much-money-you-
| made-go...
| sroussey wrote:
| That's what Kagi charges:
|
| https://kagi.com/pricing?plan=individual
| no_wizard wrote:
| For 300 searches a month.
|
| Google is making it based on theoretically unlimited
| searches for everyone. No caps in the number of searches.
|
| You have to to the $10 USD a month tier with Kagi to have
| the same expectation met, which is unlimited searches
| theptip wrote:
| I am extremely skeptical that many people are making an
| informed cost/benefit here. I would wager most users don't
| even know about the license terms.
|
| It's the same as infosec in general. Most people don't know
| about the risks, and anyway are bad at quantifying tail risk.
| creato wrote:
| You don't need to know the license terms to know what is
| happening. Just observe that you get ads based on browsing
| and searching behavior. Most people can see that it's
| happening and don't care. Or at least not enough to give up
| the value they get in exchange.
| hn_throwaway_99 wrote:
| I agree most folks aren't aware of the risks. But I'm
| guessing for the vast majority of people that _are_ aware
| of the risks, the thought process is basically along the
| lines of:
|
| 1. I'm simply not that important. There are millions of
| other people who have given this data to 23 and me and the
| like, and I'm just some rando peon - nobody is going to be
| specifically searching for my DNA.
|
| 2. The "worst case scenarios", e.g. getting health
| insurance denied because you have some gene, still seem
| implausible to me. Granted, there is a ton of stuff I
| thought would be implausible 5-10 years ago that is now
| happening, but something like this feels like it would be
| pushed back against from all sides of the political
| spectrum, even in our highly polarized world.
|
| 3. I haven't murdered anyone, so I'm not worried about
| getting caught up in a DNA dragnet. Sure, there can be
| false positives, but to get on in life you pretty much have
| to ignore events with low statistical probability (or
| otherwise nobody would even get in a car on the road, and
| that has a _much_ higher statistical probability of doing
| you harm).
| generationP wrote:
| What if someone in your family has done a crime, and the
| result of your DNA being online is (1) you are the first
| suspect and (2) the criminal might well learn/suspect
| that they have been compromised through you?
| mustyoshi wrote:
| Isn't it better for society as a whole if criminals are
| apprehended?
|
| Even moreso if they're one that would be a physical
| threat like you're suggesting?
| haxxorfreak wrote:
| Yes, assuming the label of who is a "criminal" is fair.
|
| There is always the risk of a society or government
| changing that definition after they have the data and
| it's too late to go back.
| nukem222 wrote:
| Depends on the crime. They aren't exactly fungible acts.
| Furthermore the state isn't exactly obligated to manage
| society, even if this has occurred in various forms
| throughout history. Many of our laws weren't exactly
| written with "society's" best interest at heart.
| Ultimately, the state will look after itself above all
| else.
|
| I'm just saying I'd like the state to have to work hard
| to put people away. The law can just as easily be wielded
| to harm people. I don't see much sign the american public
| agrees with me, and politicians certainly don't agree.
| Even mr "it's a witch hunt" trump is only anti-LEO when
| it comes to his own crimes. But I'd rather have some low
| background level of crime than the sinking feeling that
| we're imprisoning a lot of innocent people, as unpopular
| a sentiment it might be to some in this country.
|
| Besides, if the government _doesn 't_ take care of
| society, higher crime is inevitable.
| Spooky23 wrote:
| Mustyosi, your DNA was found on a coffee cup at a Denny's
| frequented by terrorists destroying Tesla property. Where
| were you on Tuesday at 2?
| adolph wrote:
| "Zoom and enhance" forensics aren't real right? Isn't it
| mostly NSA listens in and then they have to parallel
| construct something to hide the illegal pervasive
| surveillance?
| hn_throwaway_99 wrote:
| I think your example highlights why most people don't
| view these as plausible concerns:
|
| 1. If I had a family member who was a serial murderer or
| rapist a la the Golden State Killer, I would _want_ him
| apprehended.
|
| 2. "the criminal might well learn/suspect that they have
| been compromised through you?" That doesn't seem
| reasonably plausible enough to me to care. What, cousin
| Billy Bob is going to come hold me hostage because he
| knows I used 23 and me at some point? Really??
| mschuster91 wrote:
| > The "worst case scenarios", e.g. getting health
| insurance denied because you have some gene, still seem
| implausible to me.
|
| We're halfway there, data mining by insurances already is
| the norm in car insurance. We should have fought back
| _hard_ back in the day this was proposed.
|
| > I haven't murdered anyone, so I'm not worried about
| getting caught up in a DNA dragnet. Sure, there can be
| false positives, but to get on in life you pretty much
| have to ignore events with low statistical probability
|
| Even if you haven't murdered anyone or intend to to so -
| your genetic data is useful in the pig dragnet. Your
| genetic data may be what provides the pigs with a link to
| your nephew who moonlights as a graffiti sprayer... and
| yes, the German pigs are doing DNA checks on graffiti
| sprayers, they have been doing so for over two decades
| [1].
|
| [1] https://www.welt.de/print-
| welt/article398332/Graffiti-Erstma...
| hn_throwaway_99 wrote:
| Just a suggestion: if your goal is to convince the
| average Joe why DNA privacy is a concern, and you solely
| refer to the police multiple times as "pigs", you're not
| going to persuade many people.
| acdha wrote:
| Ever make bug because you wrote code thinking about how you
| wanted it to work and forgot to consider how it could go
| wrong off of that happy path? I think things like this are
| basically the same problem: when someone is focused on the
| good outcome it's just not the right context for most
| people to carefully evaluate possible negative events,
| especially low-probability ones. They're thinking it'd be
| cool to get an ancestry report, maybe lifesaving to get
| notice of genetic problem, perhaps the excitement of a
| unknown relative, and unless there's a neutral party
| involved the positives are probably going to win.
| dkh wrote:
| I am adopted. I spent most of my life having absolutely no
| idea whatsoever where I was from, or what biological risk
| factors I might have. 23andme was valuable to me on many
| levels, and even with the state the company currently finds
| itself in, it is not a decision I regret.
|
| My wife also did 23andme some years ago, through which she
| discovered she had Factor V Leiden--a fact which became
| extremely important very soon after her discovering it,
| leading directly to changes in her treatment and how
| closely they monitored her for blood clots (she had a PFO
| and some other stuff going on that was _already_
| compounding her risk of clotting and stroke), and very
| possibly may have saved her life.
|
| I'm supposed to go in and delete every trace of it out of
| fear of what the down-on-their-luck company might, or
| simply _could_ , do?
|
| While I know that my experience might be rare, I would
| regardless suggest that you reserve your skepticism,
| because you aren't really in a position to assess who did
| or did not derive a justifiable amount of value from it or
| how informed of a human being they are
| hn_throwaway_99 wrote:
| Your experience may be unique but I don't think it's
| exactly rare.
|
| I'm just another random anecdote, but I also found I had
| Factor V Leiden through 23 and me. Also, I'm gay, and for
| a long time was the only gay person I knew in my extended
| family. Through 23 and me I discovered a 2nd cousin who
| also is gay, and I met him in real life and it was an
| incredibly meaningful and important experience in my
| life.
| dkh wrote:
| One of my good friends discovered her biological half-
| brother on 23andMe who she had never been told about.
| They met up, and got along remarkably well, and have
| actually remained pretty close since! These things do
| happen. Glad you got something out of it, too.
|
| Yeah, these experiences may or may not be rare. I was
| positing that they _might_ be rare mostly to try to meet
| the person I was responded to halfway and because I don
| 't actually have evidence one way or the other
| hn_throwaway_99 wrote:
| While perhaps not as immediately "positive" an
| experience, there was a bunch of press last year about
| how consumer DNA tests were uncovering that incest was
| much more common than previously believed:
|
| https://www.theatlantic.com/health/archive/2024/03/dna-
| tests...
| vinni2 wrote:
| Did you find out your cousin was gay through 23 and me or
| from him?
| amarshall wrote:
| Genetic testing isn't the exclusive realm of 23andme, you
| can get it done through a medical provider as well who
| doesn't have such privacy-violating terms.
| dkh wrote:
| Right now, yes. But early in 23andMe's history (I got it
| done at the very beginning) they were pretty much the
| only game in town. They were the first to make such a
| service widely accessible to the public, and they helped
| establish the market in which better alternatives would
| eventually emerge.
|
| I don't tell anyone now to use 23andMe specifically, but
| the warnings and risks being discussed here apply to
| existing customers, to people who have already done it,
| and I am just speaking as one of those people.
| CamouflagedKiwi wrote:
| But most people don't want Google to not exist. They derive
| significant value from it - from Google search, from Maps,
| from Gmail, whatever. I think that the access they have to my
| data has cost me basically zero, and I've gained a lot.
|
| Had 23andme had access to my DNA, that might be worse in
| future. Although today there is not immediately a lot of
| downside, you can certainly imagine futures (maybe slightly
| dystopian ones) where that turns out to be pretty bad.
| quantified wrote:
| If your immediate family members or close blood relatives
| have done it, you're now identifiable in there.
| Yeul wrote:
| And then people wonder why we can't have serial killers
| anymore.
| smikhanov wrote:
| It's not about "the HN crowd", it's just that the time has
| changed so much. Do you remember 2008? Facebook was a swanky
| way back then to reconnect with your classmates and leave
| some "Like" things under their wedding photos. Google was
| seen as a way of organizing the world's information to make
| it universally accessible and useful, with their niche ad
| service being still in limited beta. Twitter was so unknown
| that it still hasn't even won a Webby Award.
|
| And 23andMe was already offering a $100 DNA sampling in 2008.
|
| It's easy to be cynical about this in 2025. Those who didn't
| live through the early 2000s, can't even imagine the amount
| of optimism surrounding the tech industry at that time.
| Giving my DNA to a cool new Silicon Valley firm in 2008?
| Sure, why not, it was like buying a ticket to some utopian
| future.
| quantified wrote:
| I remember 2008. It was the same thing as now. The majority
| of people just want what they want, useful or shiny, and
| don't care about the rest. Remember how many signed up for
| housing loans they couldn't pay back, knew they disn't have
| the money, but it was cool and everyone else was doing it?
| Same thing, roughly. Was the case then and will be now.
| cj wrote:
| Your comment made me think of other companies we view as
| (mostly) "good" today.
|
| E.g. tons of people take Uber/Lyft with no consideration
| about how those companies can take your travel history and
| daily schedule to monetize or sell to 3rd parties.
|
| DoorDash - what if they start selling my order history to
| insurance companies as a variable to predict
| obesity/mortality?
|
| HN/Reddit - what if some LLM scrapes all my comments, de-
| anonymizes me, and sells that info to a data broker?
|
| Visa/Mastercard - what if 100% of my credit card history is
| sold to data brokers? (Spoiler, it already often is!)
|
| Just trying to illustrate that even in 2025, we pick and
| choose what to view through rose colored glasses and what
| to frown upon.
|
| In the example of Uber/Lyft, I willingly give up my home
| address and even let me know every time I'm out of town!
| (Trips to airport) yet that seemingly doesn't cross my mind
| when requesting a ride.
|
| I don't disagree with your comment, but IMO what was true
| in 2000's is still true today: people overlook risks of
| things when the benefits are substantial enough. That's
| human nature
| ryandrake wrote:
| All of your what-ifs are almost certainly already
| happening, and probably worse.
| cj wrote:
| Right, but it doesn't seem to deter us for some reason.
| At least not yet.
| nkrisc wrote:
| Because they don't know why they should take it so seriously.
| They really just don't know why it's bad that data about
| their DNA might be sold to the highest bidder.
| alwa wrote:
| Or, at least, the benefits are front-loaded and the costs--if
| you don't write them off as theoretical--are future-you's
| problem...
| wenc wrote:
| I made an informed decision when I signed up.
|
| It's SNP genotyping, which realistically other than telling
| your ancestry and few health conditions, isn't that predictive
| of most health conditions. Genotyping only captures a small
| percentage of total genetic information (it's not a full
| sequence -- still too expensive for what I paid), and thus the
| data was actually very limited, so the risk was realistically
| very small.
|
| Privacy is about risk-reward -- rather than applying the
| preventative principle to everything (which is overly
| conservative), we make trade offs in life.
| Yeul wrote:
| You cannot predict technology though.
| dkh wrote:
| Meaning what?
| nextos wrote:
| Also, their genetic risk scores and population admixtures are
| really bad. I can't understand why they are so bad given that
| they hired pretty good researchers and building these is quite
| simple. Freely available models run circles around anything
| they report on their site.
|
| It's a bit like uBiome, they have sold a lot of snake oil and
| harmed the reputation of B2C tests. It's a shame as something
| like 23andme, plus a bit of epigenetic testing to capture
| environmental factors, could be a wonderful way to get an
| overall health snapshot.
| Glyptodon wrote:
| Well... My experience (having worked as an SWE) w/ medical
| technology is that if a company is selling something, they
| will choose the version of advice or analysis that most
| aligns with selling something. (I got ordered to adjust
| scoring thresholds in a statistical grouping to have "nicer"
| groups, for example.)
|
| If your company does treatment X that competes with treatment
| Y, they'll look to expenand the edge cases that suggest X
| over Y as much as possible. If a company wants people to feel
| like they're getting something out of a genetic profile,
| they'll report the broadest version of risk, and then slow
| roll more detailed analysis.
|
| Things like this are why I strongly think certain profit
| motives and business models should be extremely restricted.
| Just like private prisons create a profit motive for creating
| crimes, medical services have a profit motive for spreading
| inaccurate and twisted medical advice, whether it's things
| like alternative or new age medicine, treatment modality
| choices, or DNA information.
| kadushka wrote:
| I don't get it - why should I care that they have my DNA info?
| duiker101 wrote:
| "We have identified that you are at an increased risk of
| cancer. To ensure we give you the best care your insurance
| premium has now gone up 20x, you are welcome."
| noname120 wrote:
| If a company offered to pay you $119 for sending them sample
| cells from your body so that they can sequence your DNA and
| do whatever they want with it. Would you take up on the
| offer? I would not.
| brookst wrote:
| I am also fortunate enough to just not care about $120.
| That's not true of everyone though.
| Yeul wrote:
| Do homeless people in America still sell their blood?
| kadushka wrote:
| I paid them a lot more than $119 to have my DNA sample.
| quickslowdown wrote:
| You'll get it when your insurance company bought your profile
| and automatically added a ton of pre existing conditions to
| the list of things they won't cover for you. Or when the
| government decides to start rounding people up based on
| ancestry or health conditions.
|
| It'll be way too late by then, but at least you'll get it.
| throw310822 wrote:
| It's funny because people are genuinely upset at others who
| do send their dna around; but assume that their own
| government might allow such a misuse of personal
| identifiable information. If your government allows that,
| the problem is the government, not the people who sent
| their dna to 23andme.
|
| > Or when the government decides to start rounding people
| up based on ancestry
|
| And you think that not having sent your dna to 23andme
| would be a good protection from that? Like, since you are
| among the smart ones who didn't send the dna, you can keep
| quietly minding your business while the government "rounds
| up" people on a racial basis?
| neuralRiot wrote:
| >since you are among the smart ones who didn't send the
| dna, you can keep quietly minding your business while the
| government "rounds up" people on a racial basis?
|
| Sure it feels better not being a collaborator of your own
| demise though.
| throw310822 wrote:
| I think that if your government started acting nazi, you
| should become a collaborator of your own demise by
| joining an armed resistance. Or emigrate.
|
| Seriously, this attitude sounds like keeping the knives
| under lock at your home in case your wife decides to
| murder you. If you think it's a possibility, then I guess
| this poses harder questions than where to keep the
| knives.
| emilamlom wrote:
| It's much easier to convince a family member not to share
| DNA with a data broker than it is to stop government
| corruption. Is it ideal, no, but it's realistic.
| BobaFloutist wrote:
| >And you think that not having sent your dna to 23andme
| would be a good protection from that? Like, since you are
| among the smart ones who didn't send the dna, you can
| keep quietly minding your business while the government
| "rounds up" people on a racial basis?
|
| I'm going to assume that you're debating in good faith
| and will accept a powerful but unsympathetic example. The
| Golden State Killer was caught because his family members
| used commercial genetic tests, allowing investigators to
| triangulate him through DNA left at the scene, despite
| him never linking his DNA to his identity: https://en.wik
| ipedia.org/wiki/Joseph_James_DeAngelo#Arrest,_...
|
| Obviously this was a terrible man, and I certainly don't
| regret him being in jail. However, it demonstrates that
| your relatives can expose you to privacy violations
| without your knowledge or consent, and likely without
| their knowledge. It's like when an app asks for the list
| of your phone contacts, it's not just your privacy you're
| surrendering.
|
| If we ignore that the man in particular was a horrific
| serial killer, which I know is hard to do, this shows how
| people can suffer consequences from other people taking
| these DNA tests, and surely you can see how that kind of
| sucks? Like, this shows the technical possibility, which
| is unaffected by the actual reason for doing so.
| throw310822 wrote:
| No, I understand (they caught a killer in Italy in a
| similar way, though in that case the dna tests were taken
| after the fact, in a sort of "gradient ascent" pattern).
|
| But your example is that of a licit, even desirable use
| of those dna tests. They can be used for bad purposes,
| but that is what you have a government for: to decide
| what can be done and what can't. Health insurances
| obtaining your dna sequence from a third party to change
| your premium? Abso-fucking-lutely unacceptable. (And
| besides, at that point, what keeps the insurance company
| from asking your dna directly, unless you want to pay max
| price?). If you can't keep the government from allowing
| such things, you should either campaign to change the
| government or emigrate. This whole "let's keep a profile
| as low as possible because the government might go
| against me someday" is both a bit paranoid and
| fatalistic. If you distrust the government so much then
| you should put all your energies in changing it, not in
| keeping a low profile.
| untrust wrote:
| The government in power today is not guaranteed to exist
| indefinitely. Power structures change, and there is no
| definitive way to prevent your government changing
| underneath you as you are a single voter amongst a sea of
| people with different priorities.
|
| The only power you as an individual truly have is to
| lower your risk profile if such an adverse event were to
| happen. History has shown time and time again that
| governments can change dramatically for the worse in
| short timespans, and if they have data to use against you
| then they will definitely use it
| ben_w wrote:
| There's a big gap between "powerless" and "sovereign".
|
| When the literal Nazis took over Belgium and the
| Netherlands, the actions taken by the resistance in each
| included attempting to destroy official records of who
| all the Jewish people were: https://en.wikipedia.org/wiki
| /1943_Amsterdam_civil_registry_... and https://en.wikiped
| ia.org/wiki/Jewish_resistance_in_German-oc...
|
| Much harder to do that these days, when backups are
| cheap.
| relaxing wrote:
| This makes a lot of sense if you subscribe to the
| libertarian view that corporations should have unchecked
| power and the governments is out to get you.
| kadushka wrote:
| I considered this when I sent them my sample. For me the
| benefit outweighed the risk. I'm sure their DNA database
| have been sold or given to all kind of companies and
| agencies since then (many years ago). Asking them to delete
| my record now is pointless. Anyone who cared about it
| already has it.
| BobaFloutist wrote:
| For what it's worth, the ACA made it illegal to deny or
| charge more for health insurance for preexisting
| conditions.
|
| I still largely agree that it's worth keeping your DNA out
| of the hands of data brokers for several reasons, but as
| laws exist today that would not be legal.
| genter wrote:
| The political party that hates the ACA with delirious
| passion is currently in control of the House, Senate,
| White House, and Supreme Court.
| poulsbohemian wrote:
| The irony being that the whole thing is political
| theater: the basic outline of the ACA was a Republican
| bill before Obama ran with it, at which point the
| Republicans no longer wanted to visibly support it. And,
| the real net benefit of the ACA has been to further
| entrench private health insurers, which at this point is
| not a Democratic goal.
| slg wrote:
| But if this government is willing to allow insurance
| companies to factor in 23andme type data, what makes you
| think that will be the extent of this type of genetic
| data analysis? That is the far fetched part to me, it
| relies on a very narrow range of possible dystopias that
| takes advantage of voluntary genetic testing but stops
| short of mandatory or coerced testing.
|
| It reminds me of some prepper wanting to horde USD. I
| just don't see a doomsday scenario in which that matters
| compared to hording gold or some other store of value
| with more intrinsic value. That behavior suggests a weird
| cherry picking of what are likely correlated risks.
| mafuy wrote:
| In Germany, preexisting conditions are excluded from
| total permanent disability insurance. Considering how
| expensive and life-changing this insurance can be, that's
| quite an issue.
| guiambros wrote:
| With all due respect, that's baseless FUD.
|
| Call me naive, but I believe insurance companies have more
| concrete battles to fight (e.g. confirmed preexisting
| conditions), than getting in a legal quagmire with insurees
| just because " _you have 2.7% risk of having early onset of
| X, instead of the 1.35% of the average population_ ".
|
| I understand the allure of painting everything with
| dystopian Orwellian colors and "but-what-if-they-do" thing,
| but the fact that 23andme is going bankrupt and others are
| not much better (Ancestry was acquired by a PE firm in
| 2020, and is increasingly pivoting away from DNA) is a
| great indicator that DNA data is commercially worthless.
|
| If anything, the biggest risk is your data being used for
| ads. I bet some pharma companies would love to use your DNA
| data to enhance their 1PD propensity models.
| Rodeoclash wrote:
| Governments often round people up based on some criteria.
| Unless something has changed that I don't know about, I
| don't see why this won't happen again.
| mafuy wrote:
| https://en.wikipedia.org/wiki/The_Holocaust_in_the_Nether
| lan...
| poulsbohemian wrote:
| I'm not really disagreeing with you, but it seems to me
| like the insurance company already has all those blood
| panels, etc that they paid for - they know what my issues
| are long before they get around to caring about what
| 23andMe might tell them. And this government will come
| after me for being a Democrat and my neighbors for being
| melanated long before they care about my DNA.
| bobxmax wrote:
| If any of that is happening, society is already a fascist
| dystopian hellhole and my 23andme DNA is least of my
| problems
| rchaud wrote:
| I'd imagine you'd care at least a little bit considering
| you're paying _them_ for the privilege.
| cluckindan wrote:
| You will understand once DOGE starts ethnic cleansing
| dragonwriter wrote:
| > You will understand once DOGE starts ethnic cleansing
|
| The administration's ethnic cleansing policy is already
| being executed, DOGE so far hasn't been particularly
| central to that aspect of the Administration's abuses.
| whyenot wrote:
| > _I never personally understood that or why someone would want
| to turn over so much data to a commercial entity._
|
| I found my half sister and biological father thanks to 23 and
| Me. Maybe cases like this will help you understand. Some people
| are willing to "pay" a lot to find out who they are.
| 486sx33 wrote:
| Merry Christmas! Your dad isn't your dad, your biological
| father is actually mommy's old "friend" from work - Bill!
| xyst wrote:
| It only took a couple of decades of grinding down the public's
| perception of privacy.
|
| 2000s -- PATRIOT Act (and other heinous domestic surveillance
| acts with no due process) -- "wE aRe pUrSuInG tERrOrIsM"
|
| Then the invention of the portable digital camera and
| subsequent social media between the mid 2000s and 2010s --
| "selfies" and other aspects of social media made it so much
| easier for private and public entities to spy on people
|
| Then the introduction of godawful companies like "23andme".
| Fortunately never bit the hook and "FOMO'd" into it but rather
| kept this data between my doctor and myself (and the genetics
| testing company). Much more expensive, but at least I am
| covered by HIPAA.
|
| Then last but not least, the introduction of big data companies
| and broker companies which build profiles on everyone that uses
| "free" products such as Google search, Facebook, tik tok, and
| many others that preceded it.
|
| We can't even escape ads and profiling when we _pay_ for the
| fucking thing.
|
| I want to say 9/11 changed the game, but in reality I think the
| erosion of privacy was happening way before that (ie, to serve
| advertisers)
| levocardia wrote:
| 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.
| Y_Y wrote:
| 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 wrote:
| > 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 wrote:
| 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 wrote:
| 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.
| gosub100 wrote:
| Rich billionaire? As opposed to a poor one?
| rvnx wrote:
| Like the husband of the founder ?
| arjie wrote:
| 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 wrote:
| 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 wrote:
| Couldn't they find you on facebook instead of sequencing your
| genome?
| Larrikin wrote:
| Does anyone under 40 have a non locked down or an undeleted
| Facebook account?
| Manfred wrote:
| 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.
| thomassmith65 wrote:
| That's just today. We might live to see targeted diseases.
|
| My fear, in the current era, is to be included in countless
| virtual 'police lineups'. The higher the availability of my
| DNA, the higher the chance of a false positive affecting me.
| BugsJustFindMe wrote:
| The public already has enough information to substantially
| harm large groups if they want. A simple example being
| property ownership databases, which are often publicly
| available on the internet, can be referenced against
| culturally-suggestive first and last names to find the
| domestic whereabouts of large numbers of pick-your-group.
| dekhn wrote:
| Mine are here, free: https://my.pgp-hms.org/profile/hu80855C
|
| (I had this done when I was launching Google Cloud Genomics so
| I had some data that I could work with without any
| restrictions. Illumina's genetic counselors told me "you have
| no genetic risk factors that we can detect" which is more or
| less what I expected (not that I don't have any- just that
| Illumina's genetic counselors weren't very good).
| arjie wrote:
| That's terrific. Here is mine https://my.pgp-
| hms.org/profile/hu81A8CC (created now in response to your
| comment)
|
| FASTQs are much larger (being raw reads) so I'll leave them
| available via personal contact but this is a good place to
| host the VCFs. I'll answer the questions etc. as time goes
| by. Quite a few screenings have revealed a GJB2 variant in my
| genome, but I don't know if the Nebula sequencing was good
| enough to detect.
|
| Also TIL about Google Cloud's stuff for this. Seems like it's
| been subsumed into a more general SKU for now
| https://cloud.google.com/life-sciences/docs/process-
| genomic-...
| swyx wrote:
| excellent, i was giong to ask if you're going to test it
| anyway why not make it free. and now you have. nice. i'm
| really curious what the attack vector is here. i try to
| take privacy guys seriously but sometimes theres definitely
| just fearmongering
| arjie wrote:
| Yeah, it's just 100 GiB for the FASTQs. I just don't want
| to have my personal Cloudflare account upgraded to Pro
| just to host a bunch of DNA reads. If you'd like I'll
| give them to you and you can host them, though. I'm not
| charging for access so much as making sure not to get
| whacked with a bill myself. The VCFs are much smaller but
| if you think you have a better variant-calling flow
| you'll want the FASTQs.
|
| I guess I could upload the FASTQs to PGP too, but it
| doesn't seem right you know (it's going to cost them to
| store it).
| yborg wrote:
| Insurance company sees you have a marker for some chronic
| illness or cancer or whatever and suddenly you can't get life
| insurance anywhere or have a massive premium. They could even
| deduce this if only your parents' DNA is available.
|
| Current statute in the US only restricts using this data for
| health insurance as far as I know; and even if it's straight
| illegal, the playbook now is just break the rule of law and do
| whatever you want. I admire your altruism, but our society will
| not reward you for it.
| IncreasePosts wrote:
| 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?
| geor9e wrote:
| 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 wrote:
| Genetic testing might be one of the most durable goods out
| there.
| janetmissed wrote:
| 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 wrote:
| 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.
| fnord77 wrote:
| Bonta himself is about to be indicted by the feds in relation to
| the Duong family/Sheng Thao corruption probe.
| slevis wrote:
| It would be imo worse if the information just gets lost once
| 23andMe shuts down. Make genome and health information open
| access.
| steelframe wrote:
| 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 wrote:
| Most likely, they're also sharing photos, videos and intimate
| details of you on social media.
| beng-nl wrote:
| And have corresponded by email to/from GP using a hosted
| email provider..
| lelandfe wrote:
| 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 wrote:
| 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.
| swyx wrote:
| respectfully, privacy is important, but what exactly are the
| attack vectors if, say, I had your DNA? what happens?
| grumple wrote:
| The administration could decide to detain, deport, or kill
| everyone who has certain traits - say, Jewish, or Arab, or
| Mexican, or maybe just has undesirable traits. The db of
| millions of users makes this very easy.
|
| The US admin is already at the stage of mass deportations.
| Detention camps (beyond those we already have at the border)
| are probably not far behind.
| Animats wrote:
| 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-b...
| ajb wrote:
| 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)
| ripped_britches wrote:
| Why is it his prerogative to suggest this? Doesn't he have better
| things to do?
| epistasis wrote:
| AG stands for Attorney General. Seems like an excellent use of
| the position's time to me.
| huitzitziltzin wrote:
| 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.
| quantified wrote:
| 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.
| scoofy wrote:
| 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.
| carimura wrote:
| 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 wrote:
| It seems like you can sue them. This is purely legal's domain.
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