8 ms·

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

by 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
  - rchaud 2y ago
    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 2y ago
      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.)
      - treyd 2y ago
        > 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. Because in reality this is just an opt in donation to Google. It's always cheaper to just block ads entirely.
    - eek2121 2y ago
      Agreed.
  - nolist_policy 2y ago
    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-google-by-staring-at-its-ads-for-20-years https://thenextweb.com/news/heres-how-much-money-you-made-go...
    - sroussey 2y ago
      That’s what Kagi charges: https://kagi.com/pricing?plan=individual https://kagi.com/pricing?plan=individual
      - no_wizard 2y ago
        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
    - AlexandrB 2y ago
      This assumes that privacy-preserving advertising would make Google $0. I doubt this is the case, especially if every other company is also using a similar business model. For purely placement advertising, Google still has more reach than any newspaper or magazine ever produced in the pre-internet era.
- theptip 2y ago
  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 2y ago
    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 2y ago
    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 2y ago
      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?
- CamouflagedKiwi 2y ago
  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 2y ago
    If your immediate family members or close blood relatives have done it, you're now identifiable in there.
    - Yeul 2y ago
      And then people wonder why we can't have serial killers anymore.
      - smallnix 2y ago
        *stupid serial killers
  - happosai 2y ago
    Eh, Google search has become so useless I caved in and started paying for Kagi. Maps is only barely more useful than competition. Gmail hasn't added anything new for a decade.
    - CamouflagedKiwi 2y ago
      I haven't tried many alternatives to Maps. The last one I did was a built-in Tesla thing in a car that a family member had rented (he was keen on trying that out), and it was way worse. I'm sure there are other things that are better but honestly directions in Maps seem pretty good to me. I don't think I even want anything new from Gmail. It's spent that decade (and most of the one before) holding all my email and serving it to me, that seems pretty good given I haven't had to pay them a cent for it.
- smikhanov 2y ago
  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 2y ago
    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 2y ago
    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
- nkrisc 2y ago
  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 2y ago
  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… Made even more opaque by the way the DNA kit folks gave the impression of a straightforward, first-party transaction: you pay a not-insubstantial sum for us to do this service now, you get your report, done!
- jasonfarnon 2y ago
  How can someone possibly make a cost/benefit analysis when the future uses of public dna data are so speculative? Criminal in the 70s didn't think leaving their dna around could lead to their arrest 30 years down the line, probably didn't factor in their cost/benefit analysis at all. I guess maybe you could figure there's safety in numbers, if loads of people are in the same boat are you there's a ceiling on your risk (legislation eg). Those of us who grew up in the era of smoking a pack a day don't really feel that way.
- loeg 2y ago
  It's a lot less than 90%. Seems like they've exhausted the TAM and there's no one else to sell tests to.
- outer_web 2y ago
  I mean half of us have recklessly give out dna at one time or another.
- ekianjo 2y ago
  The cost is not static over time. As data storage, laws and AI evolve, the cost of having your data stored somewhere will increase significantly. So if you are making a cost evaluation based on the present situation you are incredibly naive.
- m463 2y ago
  But you have to acknowledge these companies started out as something different. 23andme started out as a democratized sequencing company google started out as a search company. It became an identification and dossier-building company later. or maybe I'm naive and they were data-grabs from the start.
- AStonesThrow 2y ago
  > consumers are fine with sharing their data Google is an advertising company. Google exists because businesses advertise and Google became, overnight in geological terms, the sine qua non of advertising. Consumers aren’t really OK with sharing gobs of private data, but most don’t have a choice, many enjoy the free shit that they get from Google, most don’t notice or realize how much and what kind of data is collected, and none zero zip nada of us can stop Google from doing it. This is absolutely nothing new in thousands of years. Businesses have sold and hoarded and collected and traded consumer info since time immemorial. Among themselves, with government, with law enforcement, with criminal gangs, who knows. You’re simply deluded if you think any commercial activity is private or confidential for a consumer. Yes even if you pay with $2 from your cleavage.
- aucisson_masque 2y ago
  I believe it’s more that people don’t see the potential threat and harm into providing sensible data to commercial entities. People who have been for instance wrongly jailed because Google gave their location history to law enforcement and they happened to be near a crime scene, these people they understand the value of privacy.
  - bonoboTP 2y ago
    People who were struck by lightning know not to go out of the house in rain. People who got hit by a falling brick on the sidewalk know to wear a hard hat when out and about. These horror stories are so rare that the vast majority of people has never personally met anyone who personally knew anyone who had it happen. So it's all entirely theoretical and speculative for people who are busy and have social life goals. It's rightfully seen in similar light as the pepper hobby or extreme zero waste green philosophy. Worrying about it is basically a hobby, an identity, a community, an esthetic. Most people have some other hobby and identity and don't need this one.
    - aucisson_masque 2y ago
      It's not so much a hoby in countries where being gay for instance gets you into jail... Or in countries where people criticizing the government policy disappear. Yet it's a reality for Billions of people in Russia, china, India until not so long ago. I mean, the world isn't just limited to the west where, at worst, you will get personalized advertisement and in very rare occasion something worst.
      - bonoboTP 2y ago
        I replied specifically to the Google account thing. I don't think political dissidents need much convincing in these matters.
        aucisson_masque 2y ago
        How wide do you think the spectrum is between political dissident and average Joe ? How would for instance, Women in the USA having to remove period tracking app because they are afraid it could be used by the government against them, fit in your thought ? It’s neither black or white, privacy nuthead or political activist. There is a wide spectrum.
- tiahura 2y ago
  The other 10% being wanted criminals? why more people don’t take their personal privacy seriously. Probably because this testing has been happening for almost 20 years at this point, and we’re still waiting to hear about someone being harmed. For the most part, the privacy concerns are FUD.
- loa_in_ 2y ago
  Perceived cost and perceived risk. It's an important distinction.
wenc 2y ago
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 2y ago
  You cannot predict technology though.
  - dkh 2y ago
    Meaning what?
    - VerminOctopus1 2y ago
      You can get pretty far through imputation. SNPs can reveal plenty about the rest of your genome even if it hasn’t been directly sequenced. Reference populations and linkage disequilibrium go a long way.
      - derbOac 2y ago
        Meh. I do research in this space and they've sucked it dry, even given everything you're saying. Progress is going to be elsewhere, like rare variants etc.
        catp 2y ago
        Read depth / structural variants as well.
nextos 2y ago
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 2y ago
  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.
  - WalterBright 2y ago
    Government funded research also has perverse incentives: 1. publish or perish, leading to lots of low quality papers 2. funding doesn't continue if one doesn't get results, leading to selection of "safe" research rather than risky research, and results that cannot be replicated 3. no funding for politically unpopular topics and, of course, the reasons why people publish overtly fraudulent research papers.
kadushka 2y ago
I don’t get it – why should I care that they have my DNA info?
- duiker101 2y ago
  "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."
  - unyttigfjelltol 2y ago
    The scenario is not occurring, and anyway... if you had information about an increased risk, you can use that information to mitigate the risk and avoid the harm. Even if you think insurance and doctors are good for you, efficient and help you feel better... they are much more effective if you as the patient have a pretty good idea of what might be going wrong.
  - polski-g 2y ago
    This has been illegal in America for almost two decades.
- noname120 2y ago
  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 2y ago
    I am also fortunate enough to just not care about $120. That’s not true of everyone though.
    - Yeul 2y ago
      Do homeless people in America still sell their blood?
whyenot 2y ago
> 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.
- deleted 2y ago
  [deleted]
486sx33 2y ago
Merry Christmas! Your dad isn’t your dad, your biological father is actually mommy’s old “friend” from work - Bill!
Pozzi1 2y ago
[dead]
xyst 2y ago
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)
billy99k 2y ago
On top of this, it ruined many families when they found out person X had a different father..
- djohnston 2y ago
  Most people value truth and I don't think revealing affairs is a valid criticism of this product.
  - callc 2y ago
    I wish most people valued truth. But I see an overwhelming amount of cognitive dissonance and disdain for seeking truth. Many people would rather keep family secrets secret for a myriad of reasons (with different justifiability)
robwwilliams 2y ago
In the case of 23andMe users do own their data. And if they download their data and then request data be deleted then they are the sole owner. But if interested in genealogy, kinship, and some of the more actionable SNPs (e.g. those in drug ADME) then the 23andMe interfaces is informative and even useful medically. I have uncovered two medically useful variants. And some fun ones too: the speed with which I metabolize caffeine. Their interface is also better than AllofUs.
ZeroTalent 2y ago
They just did this: "As an added security measure, we’re requiring that all customers choose a new password unique to 23andMe. To proceed, please reset your password." I did my test over 10 years ago and lost access to that email. NICE.
mildzebrataste 2y ago
I work in data. I knew what was at stake. But for me, I wanted my son to have the ability to trace his paternal lineage, should he ever be curious. His dad isn’t part of our lives and lives somewhere in Europe. My mom died before he was born. I convinced my dad to take the test (actual quote: “Obama’s going to put me on a list”), and I took the test too — so that my son could someday deduce his paternal side. I think it’s Polish, German, and Danish, but I’m not entirely sure. I didn’t have him take the test, just wanted to leave him the option.

by pmags 2y ago

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
- rchaud 2y ago
  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 2y ago
    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.)
    - treyd 2y ago
      > 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. Because in reality this is just an opt in donation to Google. It's always cheaper to just block ads entirely.
  - eek2121 2y ago
    Agreed.
- nolist_policy 2y ago
  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-google-by-staring-at-its-ads-for-20-years https://thenextweb.com/news/heres-how-much-money-you-made-go...
  - sroussey 2y ago
    That’s what Kagi charges: https://kagi.com/pricing?plan=individual https://kagi.com/pricing?plan=individual
    - no_wizard 2y ago
      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
  - AlexandrB 2y ago
    This assumes that privacy-preserving advertising would make Google $0. I doubt this is the case, especially if every other company is also using a similar business model. For purely placement advertising, Google still has more reach than any newspaper or magazine ever produced in the pre-internet era.
theptip 2y ago
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 2y ago
  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 2y ago
  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 2y ago
    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?
CamouflagedKiwi 2y ago
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 2y ago
  If your immediate family members or close blood relatives have done it, you're now identifiable in there.
  - Yeul 2y ago
    And then people wonder why we can't have serial killers anymore.
    - smallnix 2y ago
      *stupid serial killers
- happosai 2y ago
  Eh, Google search has become so useless I caved in and started paying for Kagi. Maps is only barely more useful than competition. Gmail hasn't added anything new for a decade.
  - CamouflagedKiwi 2y ago
    I haven't tried many alternatives to Maps. The last one I did was a built-in Tesla thing in a car that a family member had rented (he was keen on trying that out), and it was way worse. I'm sure there are other things that are better but honestly directions in Maps seem pretty good to me. I don't think I even want anything new from Gmail. It's spent that decade (and most of the one before) holding all my email and serving it to me, that seems pretty good given I haven't had to pay them a cent for it.
smikhanov 2y ago
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 2y ago
  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 2y ago
  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
nkrisc 2y ago
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 2y ago
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… Made even more opaque by the way the DNA kit folks gave the impression of a straightforward, first-party transaction: you pay a not-insubstantial sum for us to do this service now, you get your report, done!
jasonfarnon 2y ago
How can someone possibly make a cost/benefit analysis when the future uses of public dna data are so speculative? Criminal in the 70s didn't think leaving their dna around could lead to their arrest 30 years down the line, probably didn't factor in their cost/benefit analysis at all. I guess maybe you could figure there's safety in numbers, if loads of people are in the same boat are you there's a ceiling on your risk (legislation eg). Those of us who grew up in the era of smoking a pack a day don't really feel that way.
loeg 2y ago
It's a lot less than 90%. Seems like they've exhausted the TAM and there's no one else to sell tests to.
outer_web 2y ago
I mean half of us have recklessly give out dna at one time or another.
ekianjo 2y ago
The cost is not static over time. As data storage, laws and AI evolve, the cost of having your data stored somewhere will increase significantly. So if you are making a cost evaluation based on the present situation you are incredibly naive.
m463 2y ago
But you have to acknowledge these companies started out as something different. 23andme started out as a democratized sequencing company google started out as a search company. It became an identification and dossier-building company later. or maybe I'm naive and they were data-grabs from the start.
AStonesThrow 2y ago
> consumers are fine with sharing their data Google is an advertising company. Google exists because businesses advertise and Google became, overnight in geological terms, the sine qua non of advertising. Consumers aren’t really OK with sharing gobs of private data, but most don’t have a choice, many enjoy the free shit that they get from Google, most don’t notice or realize how much and what kind of data is collected, and none zero zip nada of us can stop Google from doing it. This is absolutely nothing new in thousands of years. Businesses have sold and hoarded and collected and traded consumer info since time immemorial. Among themselves, with government, with law enforcement, with criminal gangs, who knows. You’re simply deluded if you think any commercial activity is private or confidential for a consumer. Yes even if you pay with $2 from your cleavage.
aucisson_masque 2y ago
I believe it’s more that people don’t see the potential threat and harm into providing sensible data to commercial entities. People who have been for instance wrongly jailed because Google gave their location history to law enforcement and they happened to be near a crime scene, these people they understand the value of privacy.
- bonoboTP 2y ago
  People who were struck by lightning know not to go out of the house in rain. People who got hit by a falling brick on the sidewalk know to wear a hard hat when out and about. These horror stories are so rare that the vast majority of people has never personally met anyone who personally knew anyone who had it happen. So it's all entirely theoretical and speculative for people who are busy and have social life goals. It's rightfully seen in similar light as the pepper hobby or extreme zero waste green philosophy. Worrying about it is basically a hobby, an identity, a community, an esthetic. Most people have some other hobby and identity and don't need this one.
  - aucisson_masque 2y ago
    It's not so much a hoby in countries where being gay for instance gets you into jail... Or in countries where people criticizing the government policy disappear. Yet it's a reality for Billions of people in Russia, china, India until not so long ago. I mean, the world isn't just limited to the west where, at worst, you will get personalized advertisement and in very rare occasion something worst.
    - bonoboTP 2y ago
      I replied specifically to the Google account thing. I don't think political dissidents need much convincing in these matters.
      - aucisson_masque 2y ago
        How wide do you think the spectrum is between political dissident and average Joe ? How would for instance, Women in the USA having to remove period tracking app because they are afraid it could be used by the government against them, fit in your thought ? It’s neither black or white, privacy nuthead or political activist. There is a wide spectrum.
tiahura 2y ago
The other 10% being wanted criminals? why more people don’t take their personal privacy seriously. Probably because this testing has been happening for almost 20 years at this point, and we’re still waiting to hear about someone being harmed. For the most part, the privacy concerns are FUD.
loa_in_ 2y ago
Perceived cost and perceived risk. It's an important distinction.

wenc 2y ago

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 2y ago
You cannot predict technology though.
- dkh 2y ago
  Meaning what?
  - VerminOctopus1 2y ago
    You can get pretty far through imputation. SNPs can reveal plenty about the rest of your genome even if it hasn’t been directly sequenced. Reference populations and linkage disequilibrium go a long way.
    - derbOac 2y ago
      Meh. I do research in this space and they've sucked it dry, even given everything you're saying. Progress is going to be elsewhere, like rare variants etc.
      - catp 2y ago
        Read depth / structural variants as well.

nextos 2y ago

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 2y ago
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.
- WalterBright 2y ago
  Government funded research also has perverse incentives: 1. publish or perish, leading to lots of low quality papers 2. funding doesn't continue if one doesn't get results, leading to selection of "safe" research rather than risky research, and results that cannot be replicated 3. no funding for politically unpopular topics and, of course, the reasons why people publish overtly fraudulent research papers.

kadushka 2y ago

I don’t get it – why should I care that they have my DNA info?

duiker101 2y ago
"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."
- unyttigfjelltol 2y ago
  The scenario is not occurring, and anyway... if you had information about an increased risk, you can use that information to mitigate the risk and avoid the harm. Even if you think insurance and doctors are good for you, efficient and help you feel better... they are much more effective if you as the patient have a pretty good idea of what might be going wrong.
- polski-g 2y ago
  This has been illegal in America for almost two decades.
noname120 2y ago
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 2y ago
  I am also fortunate enough to just not care about $120. That’s not true of everyone though.
  - Yeul 2y ago
    Do homeless people in America still sell their blood?

whyenot 2y ago

> 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.

deleted 2y ago
[deleted]

486sx33 2y ago

Merry Christmas! Your dad isn’t your dad, your biological father is actually mommy’s old “friend” from work - Bill!

Pozzi1 2y ago

[dead]

xyst 2y ago

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)

billy99k 2y ago

On top of this, it ruined many families when they found out person X had a different father..

djohnston 2y ago
Most people value truth and I don't think revealing affairs is a valid criticism of this product.
- callc 2y ago
  I wish most people valued truth. But I see an overwhelming amount of cognitive dissonance and disdain for seeking truth. Many people would rather keep family secrets secret for a myriad of reasons (with different justifiability)

robwwilliams 2y ago

In the case of 23andMe users do own their data. And if they download their data and then request data be deleted then they are the sole owner. But if interested in genealogy, kinship, and some of the more actionable SNPs (e.g. those in drug ADME) then the 23andMe interfaces is informative and even useful medically. I have uncovered two medically useful variants. And some fun ones too: the speed with which I metabolize caffeine. Their interface is also better than AllofUs.

ZeroTalent 2y ago

They just did this: "As an added security measure, we’re requiring that all customers choose a new password unique to 23andMe. To proceed, please reset your password." I did my test over 10 years ago and lost access to that email. NICE.

mildzebrataste 2y ago

I work in data. I knew what was at stake. But for me, I wanted my son to have the ability to trace his paternal lineage, should he ever be curious. His dad isn’t part of our lives and lives somewhere in Europe. My mom died before he was born. I convinced my dad to take the test (actual quote: “Obama’s going to put me on a list”), and I took the test too — so that my son could someday deduce his paternal side. I think it’s Polish, German, and Danish, but I’m not entirely sure. I didn’t have him take the test, just wanted to leave him the option.