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
Similar situation, I did a number of tests( ancestry, myheritage, 23andme, etc) the information it provided answered many questions, and introduced people I never would have expected to my family tree (half brother/sister, etc).
23andme had little data on my fathers side so it split my mothers side into my family tree at the great grandfather level. I spent awhile tracing people only to discover my father and mother side seemed to be related. After going on Ancestry I was able to figure the mistake.
Myheritage had European links. 23andme North American links. Ancestry had everything. The genetic time period they match against are different. 23andme matches against 100ad while ancestry 1200ad. So if you are Celtic perhaps your people were in Spain in 100ad but in Ireland or Scotland by 1200. Using different services gives you a fuller picture and understanding of human migration and your migration. The difference from 23andme telling you you are broadly northwestern european vs Cornish/Welsh/Scottish is huge but illustrates what you match against really changes your identity.
I get the medical angle, but I cannot understand why it would matter to know that some distant ancestor may be from scotland. Is that really worth turning over your detailed biological build plan with all its flaws to some shady cooperation?
I worry more about Google, Facebook, mobile apps, cell phones tracking location, interests, activities putting it together for others to buy.
These tests do not do a full detailed analysis if you want that you need to find a clinic and pay thousands of dollars. For what they do tell you I wouldn't be afraid for the entire world to see.
Discovering who you are, where you came from, discovering who your relates are, what your last name is, where people with your genes live now, the backstory on how your wave of immigration came and where they settled and why has been worth it.
The information exposed by 21andme was profile and ethnicity information. I'm okay with any of that becoming public, the public part of a facebook profile shares personal data. Actually I wish more people would ask me about my ethnicity data. I think it would make a great addition as a facebook profile section and if facebook still allowed developers to create profile addons I would create one.
Not aware or the reasoning. I looked it up. This article talks about the countries that do and don't.. why black lives matter is protesting in Germany over it.
My guess would be to protect European identity from the reality. Europe has a different level of acceptance of foreigners and a history to protect. I can accept their compromise because of their political situations.
In Canada it's promoted. In the US it gets combined into American identity and promoted in Europe it's hidden.
> Ethnicity can be easier discovered through last name
Most people in Russia who identify as Jewish and/or emigrated to Israel have non-Jewish last names. You really would never know if they didn't file the paperwork.
There are political parties in the world today speaking of remigration based on citizenship of family up to 3 or 4 generations. The data from 23andme would fit this purpose perfectly.
23andme data is not ancestry.com data. They lump you into groups from 100ad. Hard to match to country origins when groups are broadly called northwestern european which combines Ireland, UK, Sweden, France, Germany, Sweden, etc into one group.
Wouldn't they use the citizenship data they have from the last 100 years? If they used 23andme data wouldn't they have floods of people from US, Canada, Australia, who could claim a new citizenship?
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.
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.
If you're talking about finding specific biological ancestors (names) then yes.
But certain general ancestral data can be deduced from variations in your DNA that are observed in some known current/historical population. I.e, I share much in common with people sampled from Scotland -> I must be Scottish.
People are warned not to put much trust into the ethnicity estimates, sometimes even by the services themselves. Telling western Europeans apart is hard.
It's either matching to specific people in the service's reference group who have declared that they are Scottish, or it's trying to guess based on the mix of ancestral populations 2000+ years ago ("western hunter gatherer", "early Neolithic farmer" etc.)
Maybe for those in the US, or at least parts of it. If there's an option for the other 8 billion people that's at least as good as 23andme from a medical perspective, I think a lot of people on HN would be very interested to learn about it.
Uninsurable where? In the US most people get their insurance through group policies, either through their employer or through the government marketplace. Life insurance companies might be able to make use of your DNA information to alter rates, but I don't see how medical insurance would be able to do so.
Speeding is a choice, one that's extremely easy to change, and it ultimately an exceedingly trivial matter.
You are born with your genetics, and you can’t change them. You are them. They will likely impact how and you die. All you can do is be aware of them so you can try to be proactive.
So there’s really no comparison between that and voluntarily driving a car too fast
If that’s genuinely how it worked, where the more health problems you are at risk for, the more money you have to pay, this would result in the people who already have the shittiest stuff to deal with in their lives having that compounded by also having to pay more than everybody else.
Not sure what more needs to be said, but if there is anyone out there who is unconvinced, I probably won’t be inviting them to dinner parties anytime soon
Is it fair that life insurance for 90 year olds is rather expensive? Yes, because the foremost purpose of insurance is the quantification and management of uncertain risk.
If someone has a higher probability of getting sick / dieing / getting in a wreck then the risk is different and should be priced accordingly. If you don’t, you’re not taking about insurance anymore. You’re talking about a wealth transfer system where good drivers subsidize the bad.
Tomato tomato. It's insurance on a societal level - the guarantee that your children, for example, will still be able to afford a medical policy the same as everyone else can even if they lose the genetic or developmental or whatever other lottery.
There's no divine directive that states that risk sharing must be done by voluntarily joining a pool run by a private entity that's priced uniquely per individual. That's merely one way to go about it.
To be fair it's the only sensible way for a private entity to go about it in the absence of legislation that prevents others from being more efficient. In the case of the US specifically, as long as everyone is forced to play by the same "inefficient" rules the free market will continue to work.
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.
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
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:
IIRC, his first and last name were visible to me in 23 and me, so I googled him and saw that we was a therapist with a focus on the LGBT community, so then I messaged him through 23 and me, told him a bit of my story and asked him if he was gay.
It might not happen. Fingerprints are partly heritable – immigration delay disease, for example, has an identifiable point mutation – but you'd be laughed out of the room if you tried to suggest that given time, we would eventually be able to predict fingerprints from genomes.
Non-heterosexual behaviour can be observed in most social amniotes, even those without fingerprints. Genetically-identical twins do not have identical sexual proclivities. There's no a priori reason to believe there's even a "gay gene" to find.
And either gayness is evolutionarily beneficial (kin selection?), or it's so fundamental to amniote psychology that evolution can't get rid of it. (Or both, I guess.)
I'm totally with you on the value prop at the time we signed up. I was more surprised that it sounds like you are reluctant to delete now, when the company is going through an unpredictable transition.
Did I get that right? If so, is there an ongoing value you want to maintain, or it more out of respect for the organization that provided you value in the past?
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).
> 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].
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.
If the pigs don't want to be referred to as pigs any more, they should push their unions to fight for yeeting the bad apples out of the force for good instead of just hiring those who behaved so utterly braindead that IA had no choice but to yeet them in the next town.
At the moment pigs can break the law and abuse their authority any way they please with barely any chance of getting even a slap on the wrist - and even if they kill someone, chances are high they'll either get off entirely on "reasonable fear" or they'll get pardoned.
You're free to call the police whatever you want. But that's not what my comment was about.
Again, if your goal is to convince people (or at least have a constructive dialogue) why they should care about genetic privacy, all you have done for your average person is convince them even more that your opinion should be discounted.
Sure, but the audience for 'being aware of DNA privacy' is not the police, but normal citizens, particularly a good number of people who, despite the abuse, are a general good in society.
If you honestly believe that, you live in an echo chamber on this topic. This Gallup poll from 2024 reported a majority of Americans have either "a great deal" or "quite a lot" of confidence in the police: https://news.gallup.com/poll/647303/confidence-institutions-...
Having confidence in the polices ability to be police doesn't mean you like cops. I'm confident that police are quite good at their jobs, because we don't measure "good" by how little people get hurt or killed in the act of policing.
There is a chart at the bottom of the article I linked that ranks different institutions about which people were all asked the same question "How much confidence you you have in institution X". Note if you include the "some" answer, the "generally positive responses" tally rises to 83%, with only 17% saying "very little" or "none".
But more importantly, the police were the 3rd highest rated institution, behind "small business" and "the military". They ranked above "higher education", "the church or organized religion", "public schools", "organized labor", "banks" and "newspapers".
> everyone hates cops. I legitimately have never personally met someone who likes the police. ... maybe they have family in the police or something
I know a couple people in different police forces. From what I have been able to tell they are like myself and the other people I tend to be around. Mostly decent people trying their best to be good humans for themselves and society.
People don't hate cops, they hate the things that happen when corrupted people make it into the job and do corrupted things because of the power that job wields. Or when they are or have been caught breaking the law by cops who are doing their job to enforce the law.
I have never heard of anyone hating cops for showing up to help when their assistance was needed.
Agree but even though they feel this way, there are institutional forces at work.
> [...] Mostly decent people trying their best to be good humans for themselves and society.
What do you think would be an honest answer to "how many times have you let another police officer off the hook for something that a civilian would have been arrested/given a ticket for"? Like - how many times per year? How severe are the violations?
Considering the small-ish/mid-size forces they are on, I am not sure they would be in that position. They are uniformed and the two that I know better than the other one are female. Most stories they tell that have any "excitement" are of dead bodies, accidents & natural causes mostly, that they respond to reports of--which tbh was a shock to learn about how often/how many dead people they see.
[added] I don't disagree that there are institutional forces at work and that does happen. At the same time, when it is very obviously illegal that ruins others; if they cover that up, that puts them in the corrupted people category for me. The individuals not the entirety of the force
> I have never heard of anyone hating cops for showing up to help when their assistance was needed.
Oh, the naivety. It's hard to hear someone hating cops who showed up to help after the cops who showed up to help shot them in the face to death. For example.
"If you have a problem, and call the cops, now you have two problems".
IAAL. If you’re in the US, you may have noticed the explosion in plaintiff attorney advertising over the last 15 years. Do you want to sue: the other driver, Monsanto, the Boy Scouts, 3M, the Catholic Church, Aesbestos manufacturers, etc. Notice that you never see ads for suing for police misconduct? It’s because it’s such an anomaly that it would be a waste of money.
It’s one of those things that’s upsetting, so our brains exaggerate the actual relevance.
Just because you've never seen it advertised doesn't mean it isn't happening. And there's 3300 counties in the US, and fifty state police entities, plus however many municipalities with police forces. Also, if you AAL, "qualified immunity" makes it difficult to "go after" individual police, so most suits are filed against the city and the department for having "bad policy" - because proving civil rights violations is quite difficult, even if it seems like a cut and dry case.
I get calls everyday about suing everybody: employers, gas stations, doctors, dentists, teachers, banks, landlords, etc. Cop calls are rare.
A couple of times in my first five years or so, someone called and had a story that sounded plausible, and I got the video - either from the car or the venue. After watching them, I basically stopped taking those calls.
I've been to countries where indeed most people hate law enforcement, which is widely known to be corrupt and inefficient.
The US cops are paragons of professionalism and courtesy compared to that, and most people in the US, like, don't mind with cops, compared to those places. (This is with all the known non-ideal performance of the US cops.)
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?
“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?
Their use as evidence has been challenged by academics, judges and the
media. There are no uniform standards for point-counting methods, and
academics have argued that the error rate in matching fingerprints has
not been adequately studied and that fingerprint evidence has no secure
statistical foundation. Research has been conducted into whether experts
can objectively focus on feature information in fingerprints without
being misled by extraneous information, such as context.
There's a common belief that fingerprint analysis is objective and reliable, but there's a great deal of subjectivity involved. Additionally, there have been several convictions involving fingerprints as evidence which were eventually overturned.
While they may still be useful, they have an image of infallibility that doesn't line up with reality.
There are many instances of people being questioned, harassed, and even framed based on circumstantial evidence. Western judicial systems are specifically engineered to address these problems via the process of discovery and adversarial argument. There has never been any documented instance of a death being caused by quantum tunnelling.
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.
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??
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.
I think most people do the cost benefit analysis in a much more empirical manner than your theoretical framework. Most everybody has a justifiable reinforced belief that trading data for value is worth it, since the vast majority of people don't feel like they've been on the losing side when they participated in these transactions before.
One can argue that these people may not have understood that a transaction was occurring. I would argue that this is beside the point. Their intuition is hard to discredit in the face of their lived experience. Aside from the marketing spam, most people are probably right in thinking that they've been better off with Google/<alternative> than without.
We can pontificate that people should know more about what they agreed to, and so on, if only they knew better, etc. But this rings hollow and very hypothetical to the vast majority of us. It's worrisome in thought exercises, but not validated in real life.
I’d say it was a mix of both for me, combined with being younger and having an “uneven” privacy perception. This said, besides being annoyed, I can’t really tell what the impact is because I can’t even quantify the amount of information (e.g. “resolution”) to the possible uses of that information.
Perhaps this could be solved with a class action law suit, that would make it illegal for private entities to own the data post fact, combined with how it was marketed, etc. I’ve seen interest rates for credits reverted this way and credits reduced, for similar reasons. But again, it’s a trade off here too :)
Does "infomed cost/benefit" mean "agree with my opinion"? How much information does someone need to show they understand? Do you know the lcense terms to every service you use? certainly not, so applying this standard only when it's your field of expertise is extremely biased.
Most people haven't died or had their bank account drained due to bad opsec, so I'm guessing they are accurately assessing the risk as "could be worse". There are so many things that could kill you day to day that people rightly don't care about your pet issue.
In my experience, even if people knew, they just don't care.
Most people I talk to about this, tech and non-tech folk have an attitude with a.mix of "you can't escape this anyway, so might as well embrace it" and "misuse scenarios you are describing are pretty far-fetched".
I read a comment on Hacker News which suggested asking these people to provide you with their unlocked phone. The theory went that most people wouldn’t do it because they realize that they do actually have things they would prefer to be kept private or secure. The first time I tried this, the person I was trying it with unlocked her phone and handed it to me. I didn’t even know how to respond.
People worry about "real people" knowing their private stuff, eg a family member, acquaintance, colleague, neighbor etc peeking into their DMs, because these people can impact one's actual life, social life, reputation, job, marriage, etc. They don't care if some faceless corporation has their data in some database with a billion other peoples similar data, as long as that data can't get into the hands of real flesh-and-bone humans that they see with their two eyes in real life as opposed to theoretically maybe existing and doing something nebulous ly nefarious in some scifi future dystopia.
I’m sure I’m preaching to the choir here, but the data belonging to a faceless corporation (or even a government agency) can be dangerous even if the corporation does not have any nefarious intentions; this is because both the data and the corporation can eventually be compromised by malicious actors.
I personally am careful like others around here, but I know how normal people think. All anybody can list are vague nebulous future consequences while the benefits are immediate and concrete. You need to point to concrete bad things that happened to real people close to home, eg friends and family, for them to care. Not one anomalous case across the country, but something that has reality in their own real lives. I've tried telling people about privacy issues and it's harder than telling people to stop smoking or eating crap food, or to abstain from sex etc. It's seen as theoretical, abstract moral preaching. Privacy advocates can never point to real things that affect average people in big enough numbers. It's a bit of a catch 22. If the thing is too rare, it seems far fetched. If it's too common, it's seen as "if so many people are affected then I can just blend into the crowd". Meaning, since everyone is careless about privacy around them, at worst they are all going down together. But that in itself seem quite far fetched.
I guess open a social media app and post a PM accidentally in public, like:
Hi Laszlo, I'm making the trip on Friday, we can meet at 10 and you can put the stuff in my purse, it should be fine. Don't forget the jewels, that's the only reason I'm doing this.
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.
It’s the same as infosec in general. Most people don’t know about the risks, and anyway are bad at quantifying tail risk.