7 ms·

This is why I didn't use 23andMe's service. Because it's in their database, forever. I want a genetic sequencing service where they sequence everything, put i

by mahyarm 11y ago

This is why I didn't use 23andMe's service. Because it's in their database, forever. I want a genetic sequencing service where they sequence everything, put it on multiple encrypted USB sticks and send it to you. Once you confirm you received your copy, they destroy the backup USB sticks. They never will store it on some centralized server. It will never end up on some tape backup. They will never have a copy after you get yours. Then you need DNA analysis software that runs offline. Most of them won't want to do that although, because it makes them a commodity service.

striking 11y ago
But then you lose the genealogy search feature, and many people use that feature.
- tacotuesday 11y ago
  Yeah. Big loss. I don't find out my dad isn't my dad. Sometimes, it's better NOT to know these things. );
  - striking 11y ago
    This article talks about that. I think it was posted on HN before. http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-g... "check this box if you want to see close family members in this search program." It's your choice whether or not you do. If you can't handle the truth, if you're going to use that truth and act on it and ruin your life with it; that's your prerogative. Can't blame them for telling you what you asked for.
  - technofiend 11y ago
    As a counterpoint I found out who my dad really was after using Family Tree in an effort to find relatives of who I thought my dad was. Anecdotal but for me it was quite useful.
ams6110 11y ago
Yep -- this was so predictable. I would never have my DNA sequenced for any reason.
- monatron 11y ago
  That seems a bit extreme. There are plenty of clinically relevant reasons to have your DNA sequenced.
danielsamuels 11y ago
Even if they did provide that service, how would you prove they weren't storing the data anyway?
- alecco 11y ago
  Yep, Ashley Madison taught us we can't trust any company with our data.
- mahyarm 11y ago
  You couldn't. But if they advertised their process of how they do it technically, especially the no server part, then the likelihood is far less. It would be better than 23andme saying that they store it forever in their T&C, and advertise how great it is that it's in their servers basically forever.
brianbarker 11y ago
If someone wanted your dna badly enough, they could pick up your used coffee cup or fallen strand of hair just by tailing you for a minute.
- gph 11y ago
  True, but that's actually a very significant barrier to getting my DNA compared to having it sitting in a massive database that a cop somewhere can query.
- mattmanser 11y ago
  Which is an incredibly specific operation, and only affects one person, just like it should be.
  - yoodenvranx 11y ago
    Currently it is a very specific operation, but just imagine that in 10-20 years it might be possible to install some kind of very fast DNA scanner at central locations (airports, ...) which scans the air or dust on the floor for traces of DNA. Currently it sounds a bit scify-ish but I think we might get there in a decade or two.
    - icebraining 11y ago
      How would it link to you? The DNA is useless by itself.
      - chongli 11y ago
        It could link you to a surveillance photo and from there it'd match any photo ID you have via facial recognition.
    - scrollaway 11y ago
      That's a fun (and scary) thought. Thankfully we're not there yet. When we do get there I hope we'll have the same privacy concerns as we do today for these online databases. It doesn't invalidate the current concerns, though.
username223 11y ago
Sequencing is getting pretty cheap, so I imagine it won't be too long before someone offers an honest, simple business model based on charging a straightforward cost + profit. 23andme, etc, who sequence at a loss and plan to profit by selling the data however they can, are creepy. Add in that they're creating huge new honeypots of extremely personal information begging to be stolen, and I can't imagine using them.
shorttime 11y ago
Why not just sign up with a fake name, like I did?
- jevinskie 11y ago
  Because a fake name doesn't do you much good when your DNA is similar to a related person's DNA who did use their real name.
  - djhn 11y ago
    For once it's very useful to have very few family members, or have a family that is totally oblivious to technology, internet and SV startups.
Camillo 11y ago
Indeed! I have always been curious about trying 23andMe, but I was concerned about my DNA being forever stored in a database somewhere. Now my decision is final, I'm never going to use that kind of service. I think this is going to impact their growth as more people realize the implications. I doubt their recent new investors[0] are happy. [0]: http://www.forbes.com/sites/matthewherper/2015/10/14/23andme-prepares-a-comeback-raising-115-million-at-a-1-1-billion-valuation/ http://www.forbes.com/sites/matthewherper/2015/10/14/23andme...
contrahax 11y ago
I'm working on an open source DNA analysis framework to solve exactly this problem - everyone should be able to check out their own DNA without paying for it http://genomejs.com/ http://genomejs.com/
return0 11y ago
I would assume millions are traceable through 23and me simply because they can be "triangulated" via their relatives. Even if you don't use 23andme your genetic data may well be out there.
developer1 11y ago
I try not to use offensive language on HN, but are you fucking kidding me? You actually expect a single company out there to not keep your personal information? The type of system you are looking for will never exist. Ever. The only reason a company wants your DNA to begin with is either to profit from its data, or to perform crowd-sourced research that requires keeping your information indefinitely. Your comment goes far and beyond a fantasy. There will never be anything positive to gain from having your DNA analyzed. Corporate, hospital, "non-profit"... there is no such thing as a secure outlet from whom to obtain your DNA profile. There will always be a record, even if it's "erased" but still recoverable from the raw disk. Either you don't understand how corporations and modern government work, or you are insanely naive about the possible benefits from DNA analysis compared to the politicians and corporate psychopaths who will find a way to benefit from it. If you're willing to hand over your biological fingerprints to anybody, you may as well walk into your local police station and admit to a murder you haven't committed. Even if 99.99% of people submitting their DNA for analysis never see any negative consequences, the other 0.01% are going to have their lives ruined because of some supposed family association to a criminal. These days, suspicion is equal to guilt beyond a doubt. If one out a million people are falsely chased down based on something like DNA, that is one person too many. The possibility that you have some horrible abnormality that can be detected via DNA testing is so astronomically low. Stop thinking about the interesting science behind what you can learn about your body. Instead, be very concerned about the fact that there are people out there interested in nothing other than having power over others. Nobody should be submitting themselves to this horrendous risk. I cannot imagine how someone would even consider submitting themselves to such a process. I took a season pass to my local amusement park; they strongly suggest you provide your thumbprint instead of taking a photo for your ID. It's insane. Obviously the police or state government can force this park with hundreds of thousands of fingerprints to submit to database searches. Who the hell offers to provide their fingerprints to an amusement park, in order to save the 5 minutes of inconvenience required to go have your photo taken? "Stupid sheep" is the only phrase that comes to mind.
- zer0defex 11y ago
  "I try not to use offensive language on HN, but are you fucking kidding me? You actually expect a single company out there to not keep your personal information?" Yes, I do, actually. This kind of response is exactly the kind of attitude that perpetuates the fly-by-night shady handling of our private information that's all too pervasive these days. This bullshit stops only when laws are on the books that bring down the rain of hell if a mere squeak occurs outside regs - HIPPA is a great example of this. I've had a 23andme test kit sitting in the closet for years now at this point. I never was able to push past the hesitation they would have my data, forever, and would more than likely be persuaded at some point down the road by the almighty dollar to distribute it, as it didn't come with HIPPA protection. I don't have all the answers, but I absolutely am game for being a part of the solution.
aianus 11y ago
You're missing the whole point of 23andme. It's not a consumer product to analyze your own DNA, that's just a disguise. With machine learning and a large enough population size they will eventually be able to determine the genetic markers that promote every disease. Personalized medicine will be the next breakthrough in medicine and human longevity. This requires them to have everyone's DNA, trait, and medical history on file.
- amelius 11y ago
  Imho, this crowdsourced data belongs to the public domain. Imagine that the most important research papers were not accessible to the public, while the public contributed to them. Well, that is about to happen.
  - _ak 11y ago
    Have you heard about openSNP? It may be relevant to your interests: https://opensnp.org/ https://opensnp.org/
- jamesrcole 11y ago
  It seems pretty clear that they're objecting to the means, and I don't see any evidence that they're naive about the ends.
rmc 11y ago
What about 23andme's European offerings? The EU's data protection laws should protect you?

by mahyarm 11y ago

striking 11y ago

But then you lose the genealogy search feature, and many people use that feature.

tacotuesday 11y ago
Yeah. Big loss. I don't find out my dad isn't my dad. Sometimes, it's better NOT to know these things. );
- striking 11y ago
  This article talks about that. I think it was posted on HN before. http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-g... "check this box if you want to see close family members in this search program." It's your choice whether or not you do. If you can't handle the truth, if you're going to use that truth and act on it and ruin your life with it; that's your prerogative. Can't blame them for telling you what you asked for.
- technofiend 11y ago
  As a counterpoint I found out who my dad really was after using Family Tree in an effort to find relatives of who I thought my dad was. Anecdotal but for me it was quite useful.

ams6110 11y ago

Yep -- this was so predictable. I would never have my DNA sequenced for any reason.

monatron 11y ago
That seems a bit extreme. There are plenty of clinically relevant reasons to have your DNA sequenced.

danielsamuels 11y ago

Even if they did provide that service, how would you prove they weren't storing the data anyway?

alecco 11y ago
Yep, Ashley Madison taught us we can't trust any company with our data.
mahyarm 11y ago
You couldn't. But if they advertised their process of how they do it technically, especially the no server part, then the likelihood is far less. It would be better than 23andme saying that they store it forever in their T&C, and advertise how great it is that it's in their servers basically forever.

brianbarker 11y ago

If someone wanted your dna badly enough, they could pick up your used coffee cup or fallen strand of hair just by tailing you for a minute.

gph 11y ago
True, but that's actually a very significant barrier to getting my DNA compared to having it sitting in a massive database that a cop somewhere can query.
mattmanser 11y ago
Which is an incredibly specific operation, and only affects one person, just like it should be.
- yoodenvranx 11y ago
  Currently it is a very specific operation, but just imagine that in 10-20 years it might be possible to install some kind of very fast DNA scanner at central locations (airports, ...) which scans the air or dust on the floor for traces of DNA. Currently it sounds a bit scify-ish but I think we might get there in a decade or two.
  - icebraining 11y ago
    How would it link to you? The DNA is useless by itself.
    - chongli 11y ago
      It could link you to a surveillance photo and from there it'd match any photo ID you have via facial recognition.
  - scrollaway 11y ago
    That's a fun (and scary) thought. Thankfully we're not there yet. When we do get there I hope we'll have the same privacy concerns as we do today for these online databases. It doesn't invalidate the current concerns, though.

username223 11y ago

Sequencing is getting pretty cheap, so I imagine it won't be too long before someone offers an honest, simple business model based on charging a straightforward cost + profit. 23andme, etc, who sequence at a loss and plan to profit by selling the data however they can, are creepy. Add in that they're creating huge new honeypots of extremely personal information begging to be stolen, and I can't imagine using them.

shorttime 11y ago

Why not just sign up with a fake name, like I did?

jevinskie 11y ago
Because a fake name doesn't do you much good when your DNA is similar to a related person's DNA who did use their real name.
- djhn 11y ago
  For once it's very useful to have very few family members, or have a family that is totally oblivious to technology, internet and SV startups.

Camillo 11y ago

Indeed! I have always been curious about trying 23andMe, but I was concerned about my DNA being forever stored in a database somewhere. Now my decision is final, I'm never going to use that kind of service. I think this is going to impact their growth as more people realize the implications. I doubt their recent new investors[0] are happy. [0]: http://www.forbes.com/sites/matthewherper/2015/10/14/23andme-prepares-a-comeback-raising-115-million-at-a-1-1-billion-valuation/ http://www.forbes.com/sites/matthewherper/2015/10/14/23andme...

contrahax 11y ago

I'm working on an open source DNA analysis framework to solve exactly this problem - everyone should be able to check out their own DNA without paying for it http://genomejs.com/ http://genomejs.com/

return0 11y ago

I would assume millions are traceable through 23and me simply because they can be "triangulated" via their relatives. Even if you don't use 23andme your genetic data may well be out there.

developer1 11y ago

I try not to use offensive language on HN, but are you fucking kidding me? You actually expect a single company out there to not keep your personal information? The type of system you are looking for will never exist. Ever. The only reason a company wants your DNA to begin with is either to profit from its data, or to perform crowd-sourced research that requires keeping your information indefinitely. Your comment goes far and beyond a fantasy. There will never be anything positive to gain from having your DNA analyzed. Corporate, hospital, "non-profit"... there is no such thing as a secure outlet from whom to obtain your DNA profile. There will always be a record, even if it's "erased" but still recoverable from the raw disk. Either you don't understand how corporations and modern government work, or you are insanely naive about the possible benefits from DNA analysis compared to the politicians and corporate psychopaths who will find a way to benefit from it. If you're willing to hand over your biological fingerprints to anybody, you may as well walk into your local police station and admit to a murder you haven't committed. Even if 99.99% of people submitting their DNA for analysis never see any negative consequences, the other 0.01% are going to have their lives ruined because of some supposed family association to a criminal. These days, suspicion is equal to guilt beyond a doubt. If one out a million people are falsely chased down based on something like DNA, that is one person too many. The possibility that you have some horrible abnormality that can be detected via DNA testing is so astronomically low. Stop thinking about the interesting science behind what you can learn about your body. Instead, be very concerned about the fact that there are people out there interested in nothing other than having power over others. Nobody should be submitting themselves to this horrendous risk. I cannot imagine how someone would even consider submitting themselves to such a process. I took a season pass to my local amusement park; they strongly suggest you provide your thumbprint instead of taking a photo for your ID. It's insane. Obviously the police or state government can force this park with hundreds of thousands of fingerprints to submit to database searches. Who the hell offers to provide their fingerprints to an amusement park, in order to save the 5 minutes of inconvenience required to go have your photo taken? "Stupid sheep" is the only phrase that comes to mind.

zer0defex 11y ago
"I try not to use offensive language on HN, but are you fucking kidding me? You actually expect a single company out there to not keep your personal information?" Yes, I do, actually. This kind of response is exactly the kind of attitude that perpetuates the fly-by-night shady handling of our private information that's all too pervasive these days. This bullshit stops only when laws are on the books that bring down the rain of hell if a mere squeak occurs outside regs - HIPPA is a great example of this. I've had a 23andme test kit sitting in the closet for years now at this point. I never was able to push past the hesitation they would have my data, forever, and would more than likely be persuaded at some point down the road by the almighty dollar to distribute it, as it didn't come with HIPPA protection. I don't have all the answers, but I absolutely am game for being a part of the solution.

aianus 11y ago

You're missing the whole point of 23andme. It's not a consumer product to analyze your own DNA, that's just a disguise. With machine learning and a large enough population size they will eventually be able to determine the genetic markers that promote every disease. Personalized medicine will be the next breakthrough in medicine and human longevity. This requires them to have everyone's DNA, trait, and medical history on file.

amelius 11y ago
Imho, this crowdsourced data belongs to the public domain. Imagine that the most important research papers were not accessible to the public, while the public contributed to them. Well, that is about to happen.
- _ak 11y ago
  Have you heard about openSNP? It may be relevant to your interests: https://opensnp.org/ https://opensnp.org/
jamesrcole 11y ago
It seems pretty clear that they're objecting to the means, and I don't see any evidence that they're naive about the ends.

rmc 11y ago

What about 23andme's European offerings? The EU's data protection laws should protect you?