Remember That DNA You Gave 23andMe?

https://www.theatlantic.com/health/archive/2024/09/23andme-dna-data-privacy-sale/680057/

by _Microft • 2 years ago

146 155 2 years ago

zero-sharp• 2 years ago

Gattaca here we come. Can't wait until I start getting denied for service/opportunity X because some computer somewhere used DNA from a distant relative to determine I'm a risk.

cebert• 2 years ago

We need more legislation and legal protections in this area.

n3storm• 2 years ago

but that will end up business drive! don't you dare or lot of stakeholders will have to take the bus!

jamescun• 2 years ago

UK citizen and 23andMe customer here. How likely is the sale of UK/EU customer data, or is it worth submitting a GDPR deletion request anyway? Get my data deleted before it's sold.

EDEdDNEdDYFaN• 2 years ago

gdpr might help you with data in a web database or data warehouse but if they have anything outside of that you're still screwed. I doubt a failing company has the time, energy, or resources to comprehensively clean up your data everywhere. Definitely submit the request but don't expect it to prevent your info from being resold

KingOfCoders5• 2 years ago

GDPR covers all personal data, that would include any DNA. It also includes the prevention of creating profiles without your consent.

But as 23andme is an US company, it is not under the jurisdiction of the GDPR. The legal situation isn't clear, the EU would claim some jurisdiction, but I (IANAL) think it's more like you go to the US, walk into a Walgreen and give up your data.

Copenjin• 2 years ago

It depends on the ToS they had at the time, when they started they explicitly had protections (privacy, data handling) only for US customers pointing to some local law, no details on how the data and samples from outside the us would have been handled. And that's why I never used they service. I think the GDPR road is well worth a try, good luck.

hedora3• 2 years ago

They had a massive data breach that hit about 50% of their customers last year. There’s a good chance the data’s already being resold by brokers:

https://techcrunch.com/2023/12/04/23andme-confirms-hackers-s...

yoaviram• 2 years ago

Easy way to submit a GDPR/CCPA/etc. request: https://yourdigitalrights.org/d/23andme.com

EasyMark7• 2 years ago

Whatever you do, do it soon, because it doesn’t sound like they’re long for this (corporate) world, before they sell all that data to (probably) much more nefarious vultures that are circling

webninja2• 2 years ago

https://12ft.io/https://www.theatlantic.com/health/archive/2...

accrual2• 2 years ago

I checked the "destroy my sample after analysis" checkbox. So the analysis is there but not the actual sample. Maybe this is somewhat better?

neilv2• 2 years ago

You're confident that the sample was destroyed?

accrual2• 2 years ago

If they say they will destroy it, then I later find it wasn't destroyed and it was used in some way that was harmful to me, doesn't that make the company massively liable?

That's the only reassurance I have. It would be like illegally collected evidence. Sure, you may have some evidence (my DNA), but it's not admissible because you're not supposed to have had access to it.

a01232• 2 years ago

I'll bet everything I have they haven't destroyed the sample.

Honest and sincere question: why would you even use their service in the first place?

bitnasty2• 2 years ago

I assume anytime a company says they will delete my data that they will just remove the ability for me to access it.

EasyMark7• 2 years ago

I thought you could have them delete everything at any point, and that you just needed to request it? Article seems to imply that.

EasyMark7• 2 years ago

I looked it up, and I’m mistaken, in their “privacy” statement they say they retain your “Genetic Information” because it’s required by law, which from my perusal of the law seems like an extreme stretch of what the law says. It should be enough that they retain your contact info and a brief statement that they took your genetic information, there is no reason to keep all the genome info.

Mistletoe• 2 years ago

I’m glad I at least downloaded my data so I can have it forever and upload it where I like. I don’t regret having 23andme genotype it. I knew the pros and cons when I did it and the pros outweighed the cons for me.

mchannon4• 2 years ago

The US Government already has my DNA. Because of 23andme, I was able to discover I had one copy of delta-32, and that’s pretty cool.

I was also able to find out where I came from and connect with distant relatives. To those who are tightly connected with their huge family, you’re privileged.

I’d be sad if this resource went away but I don’t fear it being used for nefarious purposes. I can rest assured the US government is already miles ahead toward that end.

ungreased0675• 2 years ago

You don’t worry about an additional potentially malicious actor having your information because one already has it?

mchannon4• 2 years ago

If I was worried I wouldn't have furnished my DNA to a corporation with very little accountability in the first place.

I got enough out of the deal (instead of nothing from the government) that it was in my mind an acceptable tradeoff. No one's about to start cloning me.

Your DNA is not secret. You leave it everywhere you go. You have no reasonable expectation of privacy for your litter when you litter. It's only a matter of time and of tech before everybody has a copy of everybody's DNA.

dahart4• 2 years ago

There is a list of reasons several agencies in US government like the FBI collects DNA from some people, but they don’t have DNA for all US citizens and I don’t expect the government to have my DNA. What nefarious purposes do you imagine the government has? Is matching suspected criminals against the crime database a nefarious purpose?

Would you care if 23AndMe sold your DNA & analysis to a private for-profit medical insurance data provider who could recommend hiking your price or denying coverage, based on your genetic markers, without having to tell the insurance company why and without having to share your DNA? This is one of the private business nefarious purposes I worry about, based on having a friend who worked in credit processing saying that they were looking for legal ways to sell purchasing habits to medical insurance companies.

a01232• 2 years ago

What nefarious purposes do you imagine the government has? Is matching suspected criminals against the crime database a nefarious purpose?

This is just strange.

Do you have no imagination whatsoever or have you never set foot in school or do you know literally nothing about history (maybe you were born yesterday and really quickly figured out how to write, I don't know)?

mchannon4• 2 years ago

Perhaps it was inadvertent diction, but your use of “imagine” appears to ridicule my opinion. Not cool.

I’ve done time with an individual who got (I believe) wrongfully convicted due to genetic genealogy. A lay jury watches Law and Order, hear “DNA”, and will proverbially buy the Brooklyn Bridge from prosecutors.

Get too unpopular with those in power, and maybe your DNA can be traced to a shell casing for an unsolved assassination a continent away from you.

Annie Dookhan wrongfully convicted thousands upon thousands upon her doctored drug tests. Someone just like her could do it to you or someone else with your DNA test.

There are laws against insurers citing preexisting conditions to deny coverage, and most DNA is equivocal as to whether you’ll develop expensive maladies. So that doesn’t worry me either.

EasyMark7• 2 years ago

I would extremely surprised if the US government doesn’t have all of 23andme’s data, it’s simply too valuable not to get that data by any means possible for black ops side of government.

smcin3• 2 years ago

When you say "the US govt", do you mean whether DHS(/FBI/etc.) freely access the genetic data of ~15m users without warrant (or disclosure), or that various LE agencies have for a decade been requesting specific users to voluntarily share their ancestry/genetic data supposedly for cold cases [0], or whether third parties have also subpoenaed the genetic data of specific users (e.g. paternity suits), or whether 23andMe in future firesale/auction that data to other entities and whether there are limits on how they can exploit it? Anyway I guess some year soon there'll be a precedent case (like the 2019 FL Amazon Alexa voice recordings at the time of a murder), probably too late for public awareness.

Has 23andMe disclosed how many users' genetic data have been accessed by govt or LE agencies or third parties? Is it obligated to? Does this obligation still attach if/when 23andMe ceases to exist? Have any privacy researchers estimated what (ancestry-only?) data got resold on the darkweb since 2023?

Since federal laws like HIPAA don't cover 23andMe or the genetic data(!) it holds on 14+m users, because as currently written “HIPAA does not protect data that’s held by direct-to-consumer companies [outside of healthcare] like 23andMe” [1]. Although CA and FL consumer laws give some protection against the company - but no criminal protection against people selling it on the darkweb. Also, it's unclear whether any protections automatically attach in the event of a firesale of assets/bankruptcy.

Hence 23andMe was able to settle the 2023 breach of 6.9m users' data (ancestry data, not actual genetic data) lawsuit for a tiny $30m [2], no criminal penalty, no admission of negligence or wrongdoing, no executive resignations.

Compare to the (suspended) criminal conviction of the CEO in the 2020 Finland Vastaamo psychotherapy center data breach (only ~36,000 patients), for violating GDPR. [3]

Also, to the GDPR-related discussion on expectations about cloud sovereignty of genetic and ancestry data, there's an obvious implication that consumers want GDPR to effectively protect their data, they should at absolute minimum insist on a cast-iron guarantee that sovereignty is enforced. With strong criminal penalties.

[0]: Fusion.net, 2015, "Cops are asking Ancestry.com and 23andMe for their customers’ DNA" https://news.ycombinator.com/item?id=10400550 -> https://web.archive.org/web/20160707221934/http://fusion.net...

[1] https://www.npr.org/2024/10/03/g-s1-25795/23andme-data-genet...

[2] https://news.ycombinator.com/item?id=41536494

[3] https://en.wikipedia.org/wiki/Vastaamo_data_breach#Legal_aft...

wenc• 2 years ago

One of the concerns I had when I did 23andMe many years ago was that someone in the future would be able to recreate me Jurassic-Park-style. Now I'm not an expert, but based on my reading of how they collect data, turns out 23andMe doesn't actually have my DNA sequence data.

They do what is called "genotyping"[1] which is much cheaper than full "sequencing" [2], but which only probes for a limited set of known variants. So it's only partial information.

Since then 23andMe has launched a more expensive 23andMe+ Total Health offering, which does full sequencing, but like most people, I never subscribed to that package. In fact I had no occasion to interact with the company after the first result, which may be why they are struggling financially.

DNA testing is something most people might do at most once in their lives -- then they lose interest.

[1] https://customercare.23andme.com/hc/en-us/articles/202904610... [2] https://customercare.23andme.com/hc/en-us/articles/202904600...

bilsbie• 2 years ago

It wouldn’t be you in any case. Basically the same as an identical twin.

AuryGlenz• 2 years ago

Also, why would they bother?

Maybe if you were a celebrity of some sort, maybe, but even then..

alexey-salmin• 2 years ago

Even that is unlikely. We don't yet know what exact information is enough to recreate a human (or his twin) but by now we know that DNA alone is not.

Dibby0532• 2 years ago

23andMe being a Google spin-off I wouldn't be surprised if they do a full sequencing regardless of whether you pay for it or not. At the very least I would expect them to store the samples indefinitely so they can do it once it's economically viable.

blktiger• 2 years ago

As I understand it, full sequencing is a _lot_ more expensive. 23 and me currently shows the genotyping is like $100 while sequencing is $1000. It’s probably too expensive and time consuming for them to sequence everybody’s samples unless they pay for it.

glitchc• 2 years ago

Housing the samples in a controlled environment for an extended period of time is likely way more expensive than sequencing. I suspect the samples are discarded once genotyped.

aag• 2 years ago

It's not technically a Google spin-off. Google and Sergey Brin invested in it, but it was never part of Google.

falcolas• 2 years ago

This data would be of much more interest to your health insurance company. The ultimate preexisting condition pricing guide.

Mostly a US concern, as usual.

pfdietz2• 2 years ago

Health insurance companies are prohibited by law in the US from considering preexisting conditions.

amy-petrik-214• 2 years ago

Well the rightful answer is "it's complicated" DNA wise yes there are 3 billion bases and they sample about a million of them, so 1/3000 bases.

THing is about the bases

1. most of them are the same in everyone

2. the ones that are different tend to be correlated with each other locally and thus captured by their 1Mb assay

3. you can infer all the stuff they didn't sequence with pretty high confidence. Not a "in theory" but more like "has been a typical thing to do in the statistical genetics field for at least a decade"

4. outside of the genome there is the epigenome which may or may not be relevant, it undergoes very specific resets short after fertilization

also worth noting

5. bioinformatics is an imperfect and algorithm based science. Reads are aligned according to error and difference profiles (i.e. string mismatches and the most and least types of mismatches). So unless things are finely calibrated, a level of analysis most bioinformatics don't do, deeply study their read alignment penalties for particular data sets, even a robust bug-free read aligner correctly applying penalties will have bad alignments, false positives, false negatives

anyways I for one hope the futurepopele will clone me from the bytestream

steelframe2• 2 years ago

The article makes a point that 23andMe isn't bound by HIPAA, but even if it were, I wouldn't consider that adequate. The bar for collecting and holding PII, particularly medical, needs to be much, much higher than it is today.

A doctor I recently visited whipped out his iPhone and asked if I was okay with him recording our conversation so that some fly-by-night rando AI company could vacuum up our private conversation and spit out some LLM-generated summary of our visit. "Not to worry," he insisted, "they're HIPAA compliant!"

I probably should have walked out of the office right then and there, but instead I simply told him no, not under any circumstances may he record our private conversation and send it off to some third party over the Internet. He seemed a bit taken aback because I guess I am the only patient he's had push back on it. He tried saying that the service "really helped him" or something like that. It seemed like he was trying to make me feel bad for "making his job harder."

I simply replied that HIPAA compliance didn't prevent the last 5 or 6 letters I've received from both hospitals and insurance companies about "cybersecurity events" leading to the compromise of my PII. And not just any PII, mind you. It was my medical information, supposedly "protected" by HIPAA. These were major insurance companies and hospitals. And you want me to believe that some fly-by-night AI startup is going to somehow be a safe place for a goddamned fscking full audio recording of our private visit, just because they claim to be HIPAA compliant? Are you kidding me?

I've made it a point to start writing my representatives in government about these issues. They need to wake up and start doing something meaningful to protect the people who are being bamboozled by all the yahoos who play fast-and-loose with their privacy, especially medical PII.

tengbretson2• 2 years ago

HIPAA has nothing to do with PII you voluntarily disclose.

kstrauser• 2 years ago

Not if the other party is a HIPAA covered entity and it’s in the context of healthcare.

samkater• 2 years ago

I had a similar experience where I was also assured the data was “doubly protected, it’s secured by a password here and re-secured at the remote site.”

Besides that immediately making me question their security, it is a great example how people trust things without much thought. I’ve heard of calls for statistics to be pushed over calculus to improve math literacy in the general population, perhaps some cybersecurity courses should be pushed over “learn to code” to improve tech literacy.

j33zusjuice• 2 years ago

HIPAA is a joke in the first place. How to implement HIPAA compliance is entirely up to the company dealing with the data. There are no prescriptive standards to protect your data. Who isn’t HIPAA certified? It has to be the easiest thing to certify for from a technical perspective. Research teams run records through some NLP shit to depersonalize them, but we all already know it’s trivial to reverse engineer that data to its origin.

baran1• 2 years ago

HIPAA is not a joke, employees can be held personally liable for breeches. At Helix we take HIPAA very seriously

zdragnar• 2 years ago

HIPAA is a legal framework to describe lawful disclosure of health information- defining who and when, and what steps must be taken when unauthorized / impermissible disclosure happens.

It is technologically agnostic, because it applies whether your doctor is fully remote and everything uses electronic records, or if the provider is still using pen and paper and carrier pigeons.

For actual security details, there may be some regulations with the change to the mandating of electronic records, but nothing in HIPAA ourself. For that, you want to look for organizations that have a certification like SOC2 or similar.

gregw2• 2 years ago

"There are no prescriptive standards to protect your data?"

How about the 18 standards labelled A) through R) in page 97 of: https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/ad...

I am no expert but HIPPA seems far more prescriptive than say GDPR or PII regulations.

I do agree that self-certification leads to perverse incentives and lowers the bar

akudha• 2 years ago

It is possible your doctor doesn’t fully understand concerns here. Or maybe he does and doesn’t give a shit. If it is the first case, maybe there is some hope - we can try and educate them doctors.

I don’t know how to accomplish this, but we need to educate as many people as we can about privacy

DrillShopper• 2 years ago

If my doctor doesn’t understand or care about something as basic as doctor/patient confidentiality then I feel like there may be deeper problems

chimeracoder• 2 years ago

Yet another example why "HIPAA compliant" means nothing.

"HIPAA compliant" doesn't mean nothing. It means a whole lot. It's just not relevant here, because - as mentioned at the beginning of the article - 23 and Me is not regulated under HIPAA.

carimura2• 2 years ago

What options do we have to delete our data? Anyone looked in detail?

[edit]

From their website:

   Data retention
   23andMe will retain some information to comply with legal 
   obligations, including your DNA, sex, and date of birth

So apparently you can permanently delete your data, except for, oh just your DNA....

[edit 2]

From NYT (https://archive.is/ynvDR)

   However, 23andMe uses a laboratory that must follow 
   regulations under the Clinical Laboratory Improvement 
   Amendments, or CLIA. This means that some data, including 
   your DNA, sex and date of birth will be retained in order 
   to comply with these regulations. The company will no 
   longer use that information, though. You can read more 
   about the company’s deletion processhere.

freeqaz• 2 years ago

That's absurd. I wonder why? Because they need it to make their family tree work? Does anybody know why?

jayknight• 2 years ago

Here are the CLIA retention regulations.

https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-...

hedora3• 2 years ago

…because it would be illegal for them not to keep it?

I wonder which law supposedly says this.

matrix20032• 2 years ago

I misinterpret 23andme results and believe I have a horrific genetic condition. I then delete my data, commit suicide, and my family sues the company.

I’m not saying this is what they are worried about, but it could be something along those lines. I work in big finance, and there is a LOT of regulation around data retention, and it’s a lot more nuanced than people think.

Should we be allowed to delete the data? Absolutely. This will likely be a hallmark case setting president for the future.

rolph• 2 years ago

stonewalling, using the law as an excuse for noncompliance. i suspect heavy coercion has occured, its too useful to agencies to let it be deleted.

EasyMark7• 2 years ago

I looked at the 1988 law, nothing in there said they had to keep DNA and it wasn’t even mentioned. They are lying or being very liberal with their interpretation of the law to benefit themselves financially.

webninja2• 2 years ago

Has anyone here had success with deleting their 23 & Me data or data of a deceased relative?

carimura2• 2 years ago

it's easy to delete your account and "data", but their policy claims they keep a bunch of it around. I just emailed their privacy email address to find out if they can provide more information.

voisin2• 2 years ago

Is there any way to use privacy laws to have 23andMe wipe your data?

louthy3• 2 years ago

If you’re in the EU or UK, yes. File a GDPR request for removal of all data relating to you.

slowmotiony• 2 years ago

They'll definitely do it. They promise.

robterrell• 2 years ago

Removing just your data probably isn't enough?

Despite my curiosity, for privacy reasons I made the decision to not use 23andMe. (Basically - feels like information an insurer will inevitably want to use against me.) My wife did, however, and over the years our kids did too, for various reasons (an interest in genealogy, a kid with celiacs looking to trace the genetic component, etc).

Recently I was very surprised to look at the app on my wife's phone and see that they have a shadow account for me with a lot of details filled in, due to my wife/kids/siblings/cousins having used the service. I should not be suprised -- this is how they caught the golden state killer, after all.

voisin2• 2 years ago

How do they know where I currently reside?

cmsonger• 2 years ago

Paid them for a sample kit. Never used it after I carefully read the ToS and thought about what might happen.

barbazoo• 2 years ago

https://archive.ph/mjaHb

pluc• 2 years ago

This is turning out to be a really bad Christmas gift.

y-curious• 2 years ago

Looking to open a service that lets you gift someone a billboard with their first pet's name and mother's maiden name. I feel inspired

avalys• 2 years ago

What is a specific plausible scenario of something that could be done with “my DNA” that I should be concerned about here?

0-_-0• 2 years ago

I'd like to know that as well

goosejuice• 2 years ago

DNA replaced latent fingerprints to place individuals at the scene of a crime. We know fingerprints have led to wrongful conviction. Partial DNA profiles can lead prosecutors to individuals who were not involved.

Legal changes that allow insurance companies to use genetic information to increase or deny coverage. Not just to you but your entire lineage.

phkahler• 2 years ago

Insurance companies denying coverage, or charging more.

Being added to a database searched by police - this has its own hazards even for non criminals.

There are certainly other possibilities, but once the cat is out of the bag you can't avoid them.

bitnasty2• 2 years ago

Targeted ads

thomassmith652• 2 years ago

In a decade or two, death could be a real concern.

It's probably already possible, given sufficient resources, to tailor-make a virus that targets a specific person, family, or ethnic group.

Presumably it will get easier to develop designer virii, as time marches on, not more difficult.

layer86• 2 years ago

So, biological ransomeware? “Send $amount Bitcoins to $address and we’ll send you the antidote.”

bjoli3• 2 years ago

A relative id mine sent her DNA to 23andMe or something like it. I was angry then, and I still haven't forgiven her.

Shank• 2 years ago

Why is it your business what your family members do with their bodies?

teeray• 2 years ago

If you can infer things about living relatives from a DNA sample (preexisting conditions, for example), then you should need their consent to release that sample. It’s not only your information.

inglor_cz• 2 years ago

This is a genuinely interesting ethical question. While our phenotypes (bodies) are separate, our genotypes are very much a shared resource (at least for read access); an extra special case are monozygotic twins, where if you obtain sample from one of them, you just mapped both.

Fortunately we don't see applications like "personalized poisons" yet, but it is likely inevitable.

If, say, an insurance company denies you some policy because of what they learnt from your relative's DNA, you suffered a concrete harm from that sampling decision.

absisbdbjs• 2 years ago

Ironically, I think it’s this kind of attitude that creates an environment where the parent is rightfully upset.

We are not isolated units. Almost all our choices have impact on others. Lack of a shared culture creates societies where people are rightfully scared what the next isolated unit will do with their sensitive data.

It’s possible to live in a high trust society.

purple_ferret• 2 years ago

because if they murder someone, they'll be easily traceable if they leave genetic data behind

bjoli3• 2 years ago

Because I don't like what her DNA can say about me or my kids. This woman and me share enough DNA for this to be potentially pretty rough.

Secondly I don't trust anyone with that information because even though I trust how it might be used today, I don't know how it might be used in ten years.

h4ch1• 2 years ago

Sending a private corporation your DNA is a bad idea the second you hear about it no matter what the "benefits" are. Why would people, especially those who frequent HN and are aware of the data privacy debacles throughout history even trust them with something like this?

nextlevelwizard• 2 years ago

Hindsight is always 20/20. My excuse is that I was young and even now I don’t see this as a huge disaster. But maybe I am just naive.

mrweasel• 2 years ago

I think that depends on when you used their service. In the last 5 years, then yes, probably very naive. 23andMe was founded at a different point in time, where things looked more optimistic, funding was a different game and we worried less about companies misusing our personal information.

It might not be a huge disaster, but to me the issue is that the company can't make any real promises about how they might profit from the DNA of it's customers in the future. It's not a problem unique to 23andMe, I will never sign up to another social network, because of Facebooks behavior. I'll never sign up to another service such as Gmail, Outlook, YouTube or Reddit, because I've seen what those companies did and how they behaved I can no longer trust any online service. The trust that existed in the early 2000s is gone, the idea that if we didn't like something we could just leave and delete everything is gone. I don't envy someone trying to bootstrap a new service, the previous generation of companies have poisoned the well.

consteval3• 2 years ago

In my opinion this type of stuff won't become a big problem for another couple decades. When DNA is used for more and more stuff.

Just keep in mind the Golden State Killer lost his DNA in the 70s, and was prosecuted in the 2010s. Using DNA from a third cousin who used an online DNA service.

Maybe don't kill anyone and you're fine, maybe not. Time will tell.

drowntoge• 2 years ago

Any sufficiently large corporation possesses the resources to gain trust by portraying itself as the 'nice guys,' unlike the others, which is often convincing enough to fool many.

The conviction that every corporation is inherently evil or can turn evil at any point in the future never seems to fail, but many people just aren't that skeptical.

robertclaus• 2 years ago

Having worked at startups, my guess is that 23andMe doesn't even have the data a malicious company would want. Best case someone will buy them with some evil plan and realize the data is useless anyways.

ZitchDog• 2 years ago

It's not just people who gave them data who should be worried. If a close relative gave their info to 23andme, they probably have enough data to associate your DNA with that relative. For instance my mom did 23andme and now 50% of my DNA is in this private commercial database without my consent and this data is completely unencumbered by HIPAA privacy restrictions.

layer86• 2 years ago

All humans share 99% of their genome, so it’ll be more than 50%. ;)

consteval3• 2 years ago

Food for thought, they found the Golden State Killer using the DNA of a third cousin. So in a familial pool of hundreds of people, if even 1 gives up DNA then you could (with effort) find out anyone else. Provided they're in a good spot on the tree, you can't do much with a 5th cousin.

Of course the Golden State Killer was extenuating circumstances. He killed about a dozen people and sexually assaulted over 50 women in the 70s. But, it makes you wonder about the future of criminology.

dcchambers• 2 years ago

It's hard to feel bad for people that willingly gave their DNA samples to a private company. Come on y'all, use some common sense.

ProllyInfamous• 2 years ago

What about feeling bad for people whose family members submitted their own similar DNA — specifically an identical twin?

CatWChainsaw2• 2 years ago

While I agree with you that anyone worried about privacy was a bit short-sighted to use 23AndMe, it's the same deal with everything, everywhere. Your favorite social media platform surveils all your posts/pictures/videos and is probably training an AI model on them by now, even though when you signed up for Friendster in the 1940s all of today's AI developments were distant sci-fi fever dreams. Outlook and Gmail feast on your emails. Your car is sharing everything you do with the manufacturer and the dealer and probably the government. Your washer is using up huge amounts of data for some reason, and you likely didn't even set up the app it has for reasons unfathomable.

Data is money, so of course companies will pull out every stop to harvest it, monetize it, deprive you of control over it, and ransom you with it.

EasyMark7• 2 years ago

It really isn’t. Lots of people are much more trusting than most tech people that I know who know exactly how easy it is to replicate data, keep data forever, and in general misuse data. Techies and ad people have known for decades.

yoav• 2 years ago

Governments hunted down my family in the 30s without DNA, so I don’t think random PE firm is going to be able to do anything too evil with my 10 year old cheek cells or partial sequence that they couldn’t do without it. Honestly my name and face give me away.

Finding out that I had all the known markers for Parkinson’s 30 years before symptoms are expected to show up gave me an unbelievable head start and changed the trajectory of my life in several ways.

I read the TOS at the time. Would do again even with the data leak.

Remember That DNA You Gave 23andMe?

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