I do worry about my data with them, but when I think about the worst-case scenario - you will not get insured (or have high rates) because you have {some genetic condition}.. it seems just as likely that they will simply require my DNA to apply for insurance. (or get my DNA from a blood test within their system, etc.).
The obvious solution is with legislation for transparency and better health care system.
Terr_ · 1h ago
One aspect to this tangle is knowledge asymmetry: One of the traditional justifications for insurers poking around is to guard against an applicant that conceals important factors as a kind of fraud.
But what about the reverse? There's something intuitively unjust about the customer not knowing why they're being charged a higher rate, especially if it means the company believes there's a potential danger (enough that it affects the bottom-line) but conceals it.
So yeah, I think "transparency" is a robust principle to follow here, especially if anyone is arguing market competition is going to curb the worst abuses.
slg · 2h ago
The analogy I have used in the past is this fear is like thinking that health insurance companies were more likely to buy the old Marlboro Miles database rather than just making detailing your smoking history a required part of the application process.
If these companies have the legal clearance to use DNA data, why would they be satisfied only having secondhand access to that data for a relatively small subset of the population? They'll obviously want that data for everyone.
vintermann · 2h ago
Yes. Behavioral data is in most cases far more useful to them than DNA. No need to go all the way of using the non-coding SNPs in a genealogical test to infer your coding DNA, to infer your propensity for smoking, when they can just find out if you smoke instead.
abbotcabbot · 1h ago
It may have been the lower hanging fruit. But they already have all the tools and behavior analysis is no longer the competitive edge. They can ask for your smoking status and deny your claim for fraud later, but (any genetic data on behavior is an update to fraud investigation value and) they can't know your propensity to non-smoker cancers.
grues-dinner · 6m ago
Things like financial and medical data should be required to have an audit log that you can see, in real-time and subscribe to updates for, including extraction into "anonymised" formats, along with a description of that process, format and a justification for why it is robust against deanonymisation. If data is handled well, there is nothing to fear here. Fiddly, perhaps. Expensive, probably. But personal data processing should be risky and expensive.
Deliberately extracting personal data into un-audited environments without good reason (eg printing a label for shipping), should be punished with GDPR-style global turnover-based penalties and jail for those responsible.
willcipriano · 3h ago
I put a fake name in when I signed up.
Good luck blue cross.
data_maan · 2h ago
I always wondered why people are so trusting (gullible?) to use their real data
Terr_ · 1h ago
If they have enough DNA and not-so-secret genealogical data, they can derive your real name anyway.
echelon · 4h ago
> you will not get insured (or have high rates) because you have {some genetic condition}..
s/insured/hired
Wait until we have DNA detectors wired up to collect the DNA we exhale and rapid sequencers that handle what might be below the limit of detection today.
Maybe that's fifty years down the road, but it's coming.
Gattaca was a prescient premonition, it was just a hundred years ahead of its time.
rixed · 1h ago
Either you or me are deeply wrong about how genotypes relate to phenotype.
While some DNA characteristics can be statistically linked with some costly health conditions, the connection to "being a good hire" seems totally imaginary to me, has always been and will always be.
For what it's worth, public posts and comments on internet are probably a much better indicator of whether someone is going to be an obedient employee, and this dystopia is technically doable right now, and certainly many are working on it already.
lnsru · 35m ago
The samples of DNA of the best employees will be collected, evaluated and compared to applicants. So if your DNA is similar they will let you in. Wait for a clever startup to offer a complete solution for this comparison soon.
ks2048 · 3h ago
Yes, I can imagine those dystopias - my point was that I don't imagine my choice to try 23andMe in 2019 is what dooms me - while others are saved by not making that choice.
jraph · 2h ago
I kind of understand your point, now my view would be that it should not be a reason not to delete the data from them, in case it actually helps. Otherwise:
1. Why take the chance?
2. Your DNA being out in the wild also impacts the privacy of your relatives (including those you might not know, and those who don't exist yet (a child, a nephew, a niece for instance)), so if not for you, do it for them.
It won't be a guarantee, but it maximizes the chances.
vintermann · 2h ago
Why take the chance? Because genealogical data is valuable to you, of course. If it isn't, no amount of legal or technical security will make it worth it.
I do think that the health stuff from 23andMe is only marginally better than astrology, that the ethnicity estimates are inferior to what most people can get from good old fashioned genealogy, but that the matching may be useful, if you value knowing who you're related to a lot.
hammyhavoc · 3h ago
What makes you believe this is coming? What evidence points to this inevitability?
hirvi74 · 5h ago
Can one even truly delete their DNA from 23andMe? Wouldn't deleting someone's DNA require deleting not only the existing record, but also the record from all historical back-ups too? What is to say 23andMe just doesn't flip a bit in their database and claim one's DNA is (soft) deleted?
jmole · 5h ago
Is there any intrinsic value whatsoever in the DNA or SNPs themselves? Or is it just the link between your name and your DNA that is so concerning?
It seems like you could do lots of useful things without having a name attached to any particular sample. There must be some kind of differential privacy approach here that would work well.
lion__93332 · 23m ago
That feels really risky. If your DNA is preserved, could a replica of you appear decades later?
kazinator · 4h ago
The idea that someone who cares about their personal data should happily give it to a company as long as they are not near bankruptcy is absurd.
barisozmen · 4h ago
I started doing a relevant project https://github.com/barisozmen/securegenomics . Because I believe 23andMe event will result in people to be more wary of sharing their genetic data, and we need ways to make people able to contribute in genetic research without exposing their data.
jraph · 2h ago
In what you show, people encrypt their genome before uploading data on some server, and then scientists can work on the data.
How are scientists able to work on encrypted genomes?
vintermann · 1h ago
Homomorphic encryption, presumably? It's not impossible. But I also think it's overkill. Also, I don't know of good open source software that lets me do the kind of analysis I want even on non-encrypted data.
Is the best way to hasten the next bankruptcy to not delete your data?
seanvelasco · 5h ago
i'm curious, what's the worst-case scenario if one were to put their whole DNA data exposed publicly? would a future civilization re-make your image? or are there societal benefits?
ashdksnndck · 22m ago
23andMe’s new business model (Anne Wojcicki and Regeneron both had the same plan for it) is to use the data for drug development. That’s theoretically where the $$$$ is. Turns out you can use statistical association between genes and other biomarkers to discover drugs that will succeed in clinical trials.
So, I suppose, if everyone could use the data, everyone could use it to develop drugs, not just 23andMe. That’s good if you want more drugs to be developed and released… bad if you don’t.
kstrauser · 5h ago
For example, long-term care, and disability insurance aren’t blocked at the federal level from discrimination based on DNA. If they suspect you might get bad arthritis some day, they can block you from insurance (barring state laws saying otherwise).
chneu · 3h ago
what's the best case scenario?
vintermann · 1h ago
Best case scenario is that you can answer a ton of historical questions that you wouldn't have a chance to otherwise.
I'm currently in the process of figuring out where my most distant known paternal-line ancestor came from. Took a Y-DNA test, found a very distant all-male line cousin who was open to taking a Y DNA test (because he had already taken one at 23andMe, I knew the odds were good that he would be OK with it - the 23andMe test also had enough Y information that I knew it was likely we both descended from the same man).
His first results came in yesterday. In another couple of weeks, when his Y SNPs come in, we'll know which of my ~10 private mutations (ones no one else has been found to share) we have in common, which will in turn put better time estimates on our distance to other testers in our part of the Y-tree.
newman8r · 1h ago
Best case scenario is it's used to identify unknown remains, or help locate a murder suspect who's probably distantly related to you (i.e. a 5th cousin you never met). More of these samples makes it harder for serial killers to stay hidden for too long.
wslh · 5h ago
Clearly, one risk is that your DNA, or that of a close relative could be linked to a crime, even if you weren't directly involved.
hammyhavoc · 3h ago
DNA isn’t guilt by association. Cops still need real evidence—this isn’t CSI fan fiction.
a_bonobo · 1h ago
>Identification of DeAngelo began in December 2017 when officials, led by detective Paul Holes and FBI lawyer Steve Kramer, uploaded the killer's DNA profile from a Ventura County rape kit to the personal genomics website GEDmatch.[182] The website identified 10 to 20 people who had the same great-great-great-grandparents as the Golden State Killer; a team of five investigators working with genealogist Barbara Rae-Venter used this list to construct a large family tree.[183] From this tree, they established two suspects; one was ruled out by a relative's DNA test, leaving DeAngelo the main suspect.[184]
>On April 18, 2018, a DNA sample was surreptitiously collected from the door handle of DeAngelo's car;[64] another sample was later collected from a tissue found in DeAngelo's curbside garbage can.[185]
DNA as the guilt-by-association, they then will get the evidence.
Be careful not to delete all your DNA if you're still alive and using it.
CITIZENDOT · 51m ago
Why not? Elaborate
ulfw · 4h ago
Deleted it years ago. Don't trust any of them to actually have deleted it.
socalgal2 · 5h ago
I signed up for 23andme to specifically make my DNA available. I believe that more DNA = more cures
Note: I'm not saying you should not delete your DNA. Do what you want over course. I'm just saying for me, I signed up, fully expected my DNA to be used to conduct research. That fact that I could get interesting graphs and some health info was just a bonus for me
ProAm · 3h ago
Now that they have been 'sold and bought' I dont believe any of the contractual agreements have to be kept. And since the old CEO just bought the company I can only imagine the worse in terms of data to sell.
The obvious solution is with legislation for transparency and better health care system.
But what about the reverse? There's something intuitively unjust about the customer not knowing why they're being charged a higher rate, especially if it means the company believes there's a potential danger (enough that it affects the bottom-line) but conceals it.
So yeah, I think "transparency" is a robust principle to follow here, especially if anyone is arguing market competition is going to curb the worst abuses.
If these companies have the legal clearance to use DNA data, why would they be satisfied only having secondhand access to that data for a relatively small subset of the population? They'll obviously want that data for everyone.
Deliberately extracting personal data into un-audited environments without good reason (eg printing a label for shipping), should be punished with GDPR-style global turnover-based penalties and jail for those responsible.
Good luck blue cross.
s/insured/hired
Wait until we have DNA detectors wired up to collect the DNA we exhale and rapid sequencers that handle what might be below the limit of detection today.
Maybe that's fifty years down the road, but it's coming.
Gattaca was a prescient premonition, it was just a hundred years ahead of its time.
While some DNA characteristics can be statistically linked with some costly health conditions, the connection to "being a good hire" seems totally imaginary to me, has always been and will always be.
For what it's worth, public posts and comments on internet are probably a much better indicator of whether someone is going to be an obedient employee, and this dystopia is technically doable right now, and certainly many are working on it already.
1. Why take the chance?
2. Your DNA being out in the wild also impacts the privacy of your relatives (including those you might not know, and those who don't exist yet (a child, a nephew, a niece for instance)), so if not for you, do it for them.
It won't be a guarantee, but it maximizes the chances.
I do think that the health stuff from 23andMe is only marginally better than astrology, that the ethnicity estimates are inferior to what most people can get from good old fashioned genealogy, but that the matching may be useful, if you value knowing who you're related to a lot.
It seems like you could do lots of useful things without having a name attached to any particular sample. There must be some kind of differential privacy approach here that would work well.
How are scientists able to work on encrypted genomes?
Is the best way to hasten the next bankruptcy to not delete your data?
So, I suppose, if everyone could use the data, everyone could use it to develop drugs, not just 23andMe. That’s good if you want more drugs to be developed and released… bad if you don’t.
I'm currently in the process of figuring out where my most distant known paternal-line ancestor came from. Took a Y-DNA test, found a very distant all-male line cousin who was open to taking a Y DNA test (because he had already taken one at 23andMe, I knew the odds were good that he would be OK with it - the 23andMe test also had enough Y information that I knew it was likely we both descended from the same man).
His first results came in yesterday. In another couple of weeks, when his Y SNPs come in, we'll know which of my ~10 private mutations (ones no one else has been found to share) we have in common, which will in turn put better time estimates on our distance to other testers in our part of the Y-tree.
>On April 18, 2018, a DNA sample was surreptitiously collected from the door handle of DeAngelo's car;[64] another sample was later collected from a tissue found in DeAngelo's curbside garbage can.[185]
DNA as the guilt-by-association, they then will get the evidence.
https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Arrest,_...
Note: I'm not saying you should not delete your DNA. Do what you want over course. I'm just saying for me, I signed up, fully expected my DNA to be used to conduct research. That fact that I could get interesting graphs and some health info was just a bonus for me